Richard’s Journey – 394 Days
6/12 – Today was incredibly peaceful – at one point Christopher (Richard’s youngest brother) called everyone into the room. All of Richard’s grandparents, uncles, aunts, brothers & sister came in while Christopher told Richard it was ok to let go………..pretty insightful for a 7 year old. But, Richard was truly a great teacher to of all. Teacher is a consistent word that comes from friends & family to describe him. That certainly does cover it – for this 14 year journey lead by Richard has truly taught us a great deal about living life.
As everyone came together at Richard’s side he let go just a few minutes after a visit from very special visitors from St. Peters – Fr Murphy, Sister Alice & Sister Rose who came to give Richard his last rights to assure Richard’s place in heaven although there was little question of that.
So after a long year battling cancer, a year filled with challenges, some sad times but many many happy times which were only made possible because of all of you – Richard took his final trip and with him all of his family and friends – this happened at exactly 16:16 (4:16pm) today June 12th 2007.
But of course our work is not done in fact it is only beginning because despite the fact that we all feel a certain emptiness we should all be happier knowing Richard is in the happiest place – no not Disney although this was a happy place for Richard and his crew but heaven. So our work continues, to take each and every day, as a gift, which now has us helped by a little guardian angel named Richard.
As part of our work we ask that you all check in at the website over the next 24 hours for information regarding a memorial mass at St. Peters. Also please do not send anything (flowers, balloons, fruit baskets, etc) rather collect your thoughts and special memories of Richard and send them to us either in the mail or email. And also please consider a donation to Go4theGoal (www.Go4theGoal.org) which will continue to be guided by Richard’s spirit – in a way that only Richard could lead us.
Even in dying Richard is leading us as he donated his corneas which unfortunately because of Richard’s disease was all that he could give. As he would as he had always to friends, family and strangers alike given of his all.
We truly miss you Richard…but will carry you always in our hearts.
6/12 – Richard made it through the night – a very quiet one with no hallicuination as he is very comfortable in his current state – he continues to fight as he always has. I sit here with his family and friends & cry as I think what if all the pain that I am feeling could be gone through a pill but the down side is in removing the pain I would also lose the joy of having experienced Richard for 14 plus years – clearly there is no decision for as deeply painful as today & the days to come are they do not even come close to the joy of having spent a lifetime with richard has been – a lifetime filled the joy of discovery of the best that life has to offer. At this time so much goes through my head you feel like you will explode – I think about words and pictures that capture my son, my soul, a part of all of us – words like: Happy, Spirit, Soul, Extreme, Friend, Procrastion, Fireworks, Surfer, Inliner, Snowboarder, Filet, Sneaker, Rock n roll / tower, Hair, Soccer, Traveler, Philly, Smile………Appreciate hearing your words and thoughts.
6/11 – Around 3am in the morning Richard started with severe respiratory distress – pain meds helping Richard but one of the unintended consequences are halliculations although happy & typical Richard they are truely heart wrenching as they typically represent gifts of past days that we pray we have the opportunity to open once again. In these halliculations we’re going to Disney’s Catasaway Cay, skiing, and Woodward for the PlayStation plus family & friends are clearly mentioned by name…..not sure if they are all Richard’s or I’m having a few of my own……got to make you smile & laugh. Today the plan of getting the IV line in for home so we can get to home base with a CHOP team to continue aggressive treatment of the lung lesions while maintaining Richard’s comfort didn’t work out – instead we brought home to Richard with the arrival of all of his family and friends. All during the course of the day happy thoughts continue to run through my head – skiing, camp, travel, school projects, philly cheese steaks – more are sure to follow for this love for life will never die or even fade from view.
PLEASE SHARE RICHARD STORIES SO WE CAN MAINTAIN HIS SPIRIT (DrStefanacci@aol.com) as we continue to battle to get to our goal which is and has always been through out this year – to “enjoy the gift of today”.
6/10 – Tough day yesterday as we started hanging out at Richard’s bedside because of progressively worst respiratory difficulty. Then at around 3pm with the situation steadily getting worst Richard asked to go to the hospital. So the team jumped into action – doing just that getting him to the ER in record time. Once at the ER the CHOP team met us at the ambulance entry quickly making Richard more comfortable. So here we are in the Pediatric ICU which irronickly is where this story started some 15 years ago…….all during way we have really taken full advantage of each & every gift that is today……knowing full well that it’s the journey and not the destination that matters. And Richard leads this journey like no ones business with his unwaivering spirit, personality & drive.
6/9 – Well after a very successful first night of NG feeding – yesterday morning found us with a clotted tube forcing removal and reinsertion – Richard was a champ through it all and by 6pm last evening we had a new tube and round two of the feeding. Today just some more rest and relaxation….although Richard is open for text messaging at 609-313-2090….please remember he may not always respond but he will be smiling
6/8 – Yesterday was certainly a different direction which was definitely for the better. For Richard received his Nasogastric (NG) feeding tube at CHOP (thanks Carrie) and started his feeding through the tube last evening (thanks Andrew M.). As a result of the feeding tube we can more easily get Richard the calories he needs to battle this lastest challenge. Today will just be starting the weekend early with a little rest and relaxation although I’m sure that there will be some excitement while despite that Grandma and Grandpa City are leaving today Uncle Dave arrived last evening…….so we continue to take advantage of the gift that is today. And speaking of gifts – the POSITIVE ENGERY that has been coming in the way of prayers, emails, text messages, personal visits (thanks Grandma & Grandpa City), religious items (thanks Mimie), lottery tickets (thanks Gina) and a special massage chair which removes one of my jobs (thanks Aunt Collen & Uncle Andrew) – all of these sources of positive engery are very much appreciated and go a great distant in helping achieve our goal.
6/7 – Today we plan on biking in a different direction as Richard has agreed to a feeding tube after almost two weeks of battling poor appetite and nausea & vomitting. In order to build Richard back up he will be receiving increased nutritional support.
6/6 – Mary Ellen P. sent this quote from reading the Einstein book by Issacson – his opening plate show Einstein happily pedding a bicyle..the caption is lovely…Life is like bike riding. To stay balanced, you have to keep moving….we all continue to take each day as a gift and most the most out of it knowing that it is the journey that is important as it is impossible to tell where it will end. Richard has made began to move in a better direction as is eating, attitude, and pain control have all improved. Today Richard will hang with Gandma and Grandpa City who arrived last evening.
6/5 – Exciting day yesterday as Richard made numbers with regard his white count so he is able to start his new therapy for his lungs – VP16. Also made some adjustments regarding his pain meds & breathing treatment. So today we start on our new path to overcome this latest challenge. And just in time to help with the lastest challenge is Grandma and Grandpa.
6/4 – Tough weekend as we all work with Richard to reverse the tide against these latest challenges. To help any and all well wishes & stuff of interest to a soon to be high school sophomore would be appreciated. Positive energy should be directed to – 300 West Maple Avenue, Merchantville, NJ, 08109……thanks : – )
6/3 – Sunday the challenges continue to be the same as they have been through this entire year – nutrition, attitude, and immune system along wtruggling with the specific challenge of breathing. Richard has done a good job on all fronts although nutirition as it was before all of this continues to be a lifelong challenge. Why is it that the people that need to eat don’t and the ones that don’t need to eat do? It’s the constant struggle to find balance – that’s where we are now struggling to find balance between all of these counter balancing forces that we are confronted with…….talk about a tough balancing act……they don’t get any more challenging then this. For today the balance will be between encouraging Richard to eat and move to downstairs for a bit against just staying put in the comfort of his own bed….BALANCE!
6/2 – Yesterday saw some improvement yet there continue to be period of struggling with nutrition and coughing spells – today is just a restful Saturday for Richard. Expected visits from Uncle David and Echo with some other surprize visitors I’m sure….
6/1 – Richard actually got lots in yestersday – did the 4:30pm drive by at CHOP for blood work – need the results so we can determine when to start the next round of therapy unfortunately need his ANC to be at least 500 usual level is 1000 at this point Richard is only at 260 so probably won’t be ready til Monday. The nice thing about getting everything in yesterday is that today Richard can just hang at home and chill…………….
5/31 – Yesterday involved staying home – getting comfortable with the oxygen – and working on nutrition while Richard’s team investigates next steps. For today it’s more of the same – hanging at home working on nutrition while we wait to start the next round of therapy which is increasingly looking like VP16 – an oral medication that is given daily for 21 days then 7 days off before doing it all over again.
5/30 – Tough tough day yesterday & I don’t mean for the Phillies – Richard started oxygen yesterday in response to his latest challenge involving infiltrates in his lungs so we didn’t make it to the game. In addition unfortunately he is unable to start his next round of chemo because his immune system is not yet ready. So for now we treat his symdomes and wait til therapy can start. Tough situation for anyone but especially for a 14th year old who was looking forward to finishing his freshman year & enjoying his summer to the extreme.
5/29 – Heading over to CHOP early to see if Richard is ready to start his new round of therapy – would like to start sooner then later because of increasing difficulty with a non-productive cough that is really becoming a problem. Need to get a plan in place so that we can head to the Philly game this evening with Uncles Mark and Chris – something Richard has been looking forward to.
5/28 – Richard just hanging out at home after a busy few days – besides nutrition, attitude, and infections now we need to stay focused on respiratory status. Richard has been dealing with a non-productive cough that is getting more difficult to control. Still all in all a very good weekend on the friends, food, and fun front.
5/27 – Shore day today at the Warshauers – Richard hang with the crew last evening playing video games then a big breakfast this morning followed by more video gaming as we all hang out at the beach just relaxing on this Memorial Day weekend with great friends.
5/26 – Shore day today – Richard and the family are heading south to spend some time away with the Warshauers in Avalon. Yesterday Richard hung with some friends and rested after a very late night at the movies. The weather is certainly cooperating for a nice holiday weekend of family, friends, fun, food and without his catheter some swimming….
5/25 – Richard had a very busy day yesterday – blood work (good results), CT chest (still a challenge as lesions grew abit), bone scan (GREAT no new lesions) – all along the way he could not have been more pleasant & friendly – in between had a chance for cheese steak & fries on South Street. Even with all of that Richard + 8 (including Uncle Chris) made it to an 8pm showing of Pirates………..long day. Today Richard may head to school – tomorrow it’s down the shore for some time with the Warshauers. The plan for the chest challenge is to change to VP16 (Etoposide) once a day by mouth for 21 days then off 7 days probably starting June 4th …….this will certainly be nice to be away from CHOP able to go to Grandma Ann & Grandpa Dave’s ranch in New Mexico, visit friends & family down the shore & out on the island, and escape to Hawaii plus there are sure to be some surprizes as everyday is full of gifts and surprizes.
5/24 – Busy CHOP day for Richard – CT chest & full body bone scan to assess next steps in his therapy. What a difference a day makes – Richard is feeling good planning for a busy holiday weekend of food, family, friends, and fun which starts tonight with an 8:15pm showing of the Pirates of the Caribbean: At World’s End…….
5/23 – Tough night last evening for Richard and the immediate family – combination of attitude and nutrition that really got the best of Richard. Perhaps it was the low that we all feel after coming off a great vacation and returning to the reality of life, perhaps it was realizing the year anniversary has come and gone and we are still engaged in the same battle, perhaps it was restarting chemo again after only the shortest of breaks, perhaps it was just being behing the eight ball with regard nutrition, or perhaps it is just being a teenage boy wanting to fight just “because” – what ever it is it certainly made for a tough night. Today we will continue to push Richard with regard his nutrition status – he will be off of chemo until next Tuesday so perhaps we pressing we can regain some weight.
5/22 – Not sure but Richard may attempt to make an appearance at school but properly not until later in the day after he has had time to recover from his holiday.
5/21 – Despite a late night at the Artic Monkeys concert Richard & two of the Nics made it to MGM by 9am for Tower & Rock n Roll. The rest of the crew hung with the Saunders at EPCOT while the Buffas were at Universal with Uncle Randy. From MGM Richard’s crew made it over to Magic Kingdom where we hit – Space, Buzz, Splash twice, and Thunder before heading to the airport for our 5pm flight. We are already working on the next trip which is increasingly looking like some guy trips to Grandpa City’s ranch in New Mexico in June and Atlantis in September. 5/20 – Arrived bright & early back to port to disembark and travel to Disney Yacht Club to meet up with the Saunders. Later on it’s off to the Hard Rock to hang with Uncle Randy & his band the Artic Monkeys. After Richard’s usual Palm meal where he dined with Uncles, Aunts, and cousins totaling 18 we headed to the Artic Monkeys concert – Uncle John made it in from his annual golf outing to make it to the concert. After the concert Richard wanted to make it over to Magic Kingdom but couldn’t make it in time……..much rather deal with time constraints over physical ones.
5/19 – Castaway Cay today – Richard & his crew had a great time swimming. We even got 11 of them on a banana boat for a close of look of The Flying Dutch (now anchored there). Of course Richard & two of the Nicks couldn’t help but fall over board at the end of their ride but enjoyed the walk back to shore. Chris pushed to do the – as he describes it – father son Jurassic Park ride or better know as parasailing – almost 500 feet in the air – really an experience. Another dinner in their own dinning room in their suite of filet migons…….appetite & attitude. After dinner it was a late night of a movie in the theater and onboard teenage stuff.
5/18 – The boys made it over to the Atlantis resort today to experience their massive water park. With slides like the leap of faith and a combination lazy river / wave pool Richard & his crew had a real blast. It really helped that once in the rafts you didn’t have to get out to climb stairs rather a converse belt transported you up hill to the start of each ride. That really helped us all hang in there from 10am – 4pm. By the time we made it back to the ship it was filets in the suite, a visit to the “machine” and chilling.
5/17 – Last evening we received a late call from US Airways that our direct flight was canceled so we were forced into a 6am flight that connected through Charlotte. First upon the 8 of us boarding 6 found out that despite our tickets our plane didn’t have a row 33. After standing around in the back of the plane the 8 of us were finally brought up to first class. Then our hour lay over turned into a 2 minute dash from gate D14 to D2 – thankfully we made it to Orlando in one piece but definitely worn out. We had two cars to get us the ship so Richard’s crew loaded into the town car while the rest followed in the van. Upon arrival at the ship the 17 of us made it on board & then quickly went about exploring the ship – Richard’s crew finding the “machine” (code word for soft serve ice cream machine), Nic the teen lounge, Morgan the gift shop, and Chris the Oceaneer Lab.
5/16 – Richard continues to recover slowly from not only his surgery but from his week of intensive therapy – although he is still in a therapy week it is a lighter week so his appetite seems to be recovering. He although with all of us which includes a total of 5 adults and 12 kids of various ages are very excited about the upcoming cruise. It’s just one more part of intense living – really taking advantage of every single moment. We have always lived that way or at least thought we had but going through our current challenge really moves you from living blissfully clueless to truely knowing the value of each and every moment. So that’s where we are dealing with our challenge together while we intensively live every moment…….
5/15 – Recovery & preparation are the plan for today – Richard will recover from going to the OR yesterday for his cathater removal which went well while he and the rest of the crew get ready for Thursday cruise. Attached is a new posting under the “Positive Energy” page – “From Blissfully Clueless” – it’s a blog from a teenager thriving with cancer who describes going from blissfully clueless to truely knowing the value of each and every moment.
5/14 – Late Entry – Richard’s removal of his catheter went well. Back home now just resting. Without the catheter he is now set for some swimming fun in the Bahamas with family & friends – on the schedule to depart on this Thursday.
5/14 – well today’s not exactly “normal” – Richard’s heading out early to CHOP for an intravenous medication then removal of his catheter which had been put off from last week but today looks like a go. This will allow him to swim & shower – be more “normal” on our upcoming Disney cruise. Last evening was fun with the Mulbergs stopping over and Richard and Andrew M. Having some early fourth of July fun with fireworks before the family settled down into our room to watch the finale of Survivor – family tradition.
5/13 – Mother’s Day – what a difference a year makes – it has really been a best of times / worst of times roller coaster of a year. Best has been Camden Catholic, G4G Foundation, some great family & friend times including several Orlando trips (one planned for next week) and a fantastic snowboarding trip with the boys……………….now as we start year 2 we continue to celebrate each day but can’t help but look forward to more best times and to work through any challenges that might be less then idea. Richard’s hanging in there with his usual big smile & light heart – a little thinner, a lot less hair but the same Richard from last year………….Today’s looking like a “normal” day after a very “normal” evening with Richard hanging with the Nicks and friends at Nic Cs after spending some time with Aunt Rebeca, Uncle David, and Echo……So here’s to Wishing All the Mothers a Very Happy “Normal” Mother’s Day : )
5/12 – The weekend is usually of from therapy but today Richard needs to make up a dose that didn’t make it down Thursday evening. Still working on nutrition which as always during a major round of therapy has taken a hit despite Beth’s strong nutritional support. With everything Richard and his team has been though its hard to believe where we have gone in just one year. But of course the key is not to focus on the past or future but instead stay very much in the moment and stay on top of where we currently are – which for today is at home working on getting some calories in.
5/11 – What a difference a few hours makes at least in attitude – Richard had a visit last evening from Nick C. & Mrs. C which brought a really smile to him and as a result all of us. Today continue to work on those two of the three basics which has always been the keys to our challenge – attitude and nutrition – so that’s where we are all focused for now.
5/10 – UPDATE – Surgery canceled…………………….Richard was having some more nausea and vomitted so we are postponing his surgery until next week so for now it’s just therapy and working to get much needed nutritional support in.
5/10 – Big day – removal of catheter which while eliminating the need for Richard to get stuck for blood draws & medications has caused hospitalizations because of the concern of infection as well as preventing him from swimming and really taking a great shower……oh the things we take for granted. But this evening he will be able to shower and swim! This has been a tough week for despite this being an out of the hospital treatment the side effects of nausea & vomitting are not lessened. But at least Richard’s in the comfort of his own bed with family & friends around – when he’s feeling up to it.
5/9 – Tough new challenges require a remotivation of the team – that’s what’s on the agenda for today. No school, no work, no CHOP just Richard’s team getting refocused to deal with the end of a challenging year.
5/8 – Didn’t make it to school yesterday and today is up in the air as Richard starts a second round of therapy. His lab work yesterday was fine so he doesn’t need any blood at this point. Plan to work through this round as therapy and get in a good position for his cruise next week.
5/7 – Today Richard is out to school and then to CHOP for the beginning a round two of the new chemo course. This course again is IV Vincyrstine on two Mondays, oral med daily for the first week, and a second oral agent daily for two weeks then a week off. This schedule may get changed so that Richard can be in top form for our cruise on May 17th.
5/6 – Half the Stefanacci team returned from Seattle for a conference plus family visit with Haley, Jackson, Aunt Kim & Uncle Randy – actually we got to spend time with the entire Irwin family at various Seattle baseball games. Mimie & Papa also made the trip so we all got the opportunity to experience Seattle through the Irwins – which is really the best way to do that. Today we are all back to spend some quality time hanging and relaxing with Richard, Morgan and Mom and of course Max. Need to catch up on some stories from our travels and possibly make it to Spiderman 3 latter in the afternoon.
5/5 – Today Richard hung out with his gang as the frat house returned. The crew stayed up through the night only going to bed as Beth was heading out the door to pick the Seattle crew up from their red eye flight back. On a different note the word from Cherry Hill Health & Racket Club that Casino Night raised $12,000…..WOW. Their most successful fund raiser ever – much appreciated.
5/4 – Yesterday Beth called me to tell me she just exploded on Richard – she had left the house telling him she would be in class for an hour so not to call unless it was an emergency – 15 minutes into class she received a call from Richard asking if he could go to the midnight showing of Spiderman 3. I had to tell Beth that I was smiling that we were discussing teenage issues instead of other challenges…….today school and probably Spiderman.
5/3 – More of being a “normal” kid – Richard continues with school, hanging with friends, watching European football and playing videos……nice to be normal.
5/2 – School today as Richard continues his bounce back from his first round of his new therapy regimen – this off week is giving him a chance to recover by eating and getting back into school….more for the social aspect then anything else but this is certainly vital to keeping his spirits up.
5/1 – Richard will try again today to make it to school – unfortunately an upset stomach forced him home yesterday. But today’s a new day. Something else that’s new is a new outdoor theater system arriving this week just in time for summer – Friday movie nights. Just a little something to bring the party to Richard during his therapy which I’m sure everyone will enjoy.
4/30 – “Normal” day with Richard at school, the rest of the gang at school, a new puppy at home, mom and dad involved in their “normal” hecky days. In addition tonight Chris has a baseball game just part of a “normal” day that we all to often take for granted…..instead of the gift that each day is.
4/29 – Yesterday turned out to be a great day for Richard. He along with several friends from casino night had a leisurely morning. Casino Night was great medicine for Richard…he even got his appetite back!…We want to thank everyone at the CHHRC for hosting such a wonderful event…Brian Kosa and his staff did a remarkable job…It was nice getting to know him over the past few weeks. We also want to thank the tennis staff and ladies at the front desk for supporting Richard. We appreciate you being there for us! And finally we want to thank everyone who turned out to support the Go 4 The Goal foundation. The event was a big success and we thank each and everyone who attended. Today will be filled with sun and studies. Richard has not been to school in almost a month (except for last Friday, which was a half day) and has some catching up to do. We all look foward to this week being chemo free…its an off week and its a gift!
4/28 – CASINO NIGHT – Good night could not have been a better evening – Richard & his crew had a fantastic time with their own poker table. All the adults & kids had a blast unfortunately young Ryan fell & fractured his wrist but even with that it was a great event where we raised alot of money & came together with old & new friends alike……more highlights to come which will remain listed on our Fundraiser website. Today Richard is still hanging with friends while we are running around caring for the newest addition Max – there is certainly the Max Factor that we have to deal with now.
4/27 – CASINO NIGHT TONIGHT – Richard is bouncing back just in time in fact his blood counts were so good yesterday he doesn’t require any transfusions – he did go to PT yesterday at CHOP and today spent a half day at school after a long time out. But tonight it’s going to be fun and games for the entire family at the Cherry Hill Racket Club as we raises money for the Go4theGoal Foundation…this should involve a little less sweating then last weekend’s run but knowing how some of Richard’s crew plays poker there might actually be more sweating at this event.
4/26 – More home tutoring today for Richard as he deals with the latest round of therapy. Of course its a major plus that this is happening at home but it still carries the same punch as the in-patient. Next week is a break week from therapy so the build back process begins.
4/25 – Late morning day for Richard done with radiation – plans call for some home tutoring and no trips to CHOP or PENN which is a nice break from the daily run to Philly although there may be a pleasure trip into the city for cheese steaks….
4/24 – Last radiation treatment today…….yesterday Richard’s numbers were so good that he did not need any blood products. He seems to be bouncing back from the course of therapy either because he is getting used to it or because there is one less medication this week – next week is an off week from all therapy so he should be able to gain some more ground then.
4/23 – Today Richard has a full day although he does get to rest this morning before heading to CHOP for his intravenous chemo which he gets on Mondays times two then a week off. In addition he also is due for a unit of blood and his next to last radiation treatment.
4/22 – FIRST ANNUAL GO4THEGOAL COOPER RIVER 5K WALK/RACE – The first 5k run for Go4Thegoal was such a huge success. It was quite moving to the entire Stefanacci/Glew family that we have so many friends and supporters of Richard, us , and the foundation. It was so nice to see Richard’s schools represented…Camden Catholic (our new friends), St Peters (our old friends), and HFS (our friends who we only knew for a year but, are still in our hearts!)… Thank you for being there…The weather was perfect and the turnout exceeded our expectations…Thank you to all the volunteers, fruit donations from the Dipascals, and Charla Lewis and Pat Kelleher for organizing the event…We look foward to many more runs at the river…The final total is not in yet but, it looks like we will have raised more than $20,000…thanks to matching funds from Aunt Heather and Uncle Matthew and another donor!…WOW!!!…This is truely a touching moment for our family…the support of everyone on this journey is what has helped us through it…And because of all of you, there will be other children that can travel down that cancer road with a smile on their face and lightness in their hearts… P.S.And just because you have not done enough I am going to ask you to give blood!!!…It costs nothing and saves lives…If you have and extra hour one day stop by your local red cross!…Thanks
4/21 – Today’s a break from therapy – Richard had a busy last week with daily radiation and a new round of two oral chemotherapies…..now of that today just hanging out with family and friends as we all prepare for the first “Go4theGoal Foundation Cooper River 5K” on Sunday. And thankfully it looks like the weather is going to be perfect especially given the flooding that occured last Sunday.
4/20 – School work continues as Richard continues to bounce back and just in time for a beautiful weekend and our first Cooper River 5K Run…..so lace up your running or walking shoes to help raisefunds for the Go4theGoal Foundation. Today transfusion of PRBC for a hemoglobin of 9.6, platelets continue to be good. So this additional blood should charge Richard’s battery in time for Sunday’s walk.
4/19 – Energy slowly coming back – today some tutoring to get back in the school swing of things. Richard is on his 7th radiation treatment of his 10 total so just 3 left after this one is completed. Starting to get ready for a big weekend – one in which we hope to see a great deal of our supporters and those interested in helping support the Go4theGoal Foundation as we work to raise funds for children affected by cancer. As you will recall through the foundation we were able to give out over 100 holiday baskets to children at Hackensack and CHOP – baskets filled with iPods, Gameboys or video players to help make the time in the hospital a little bit better as kids focused on their goals of getting better.
4/18 – Tired yesterday although spirits were raised by Grandma Candy’s visit – despite this course of chemo being outpatient there are still side effects with tiredness being the major one. Richard’s just hanging out today working on getting through this course.
4/17 – Today is Richard’s second day of his new out patient therapy regimen – nice to not be in the hospital. He will be taking 3 medications one IV push on Day 1 & 8, one oral medication on Days 1-5 and one oral medication on Days 1-5 and 8-12. He then gets a week off before repeating the cycle again. After two cylces we will check how things are progressing and determine the next step. As we keep saying this is just a new challenge that we will raise to the occasion to deal with and make the best of this new situation for today truely is a gift.
PLEASE DON’T FORGET TO HELP OUT WITH ONE OF THE UPCOMING FUNDRAISERS FROM OUR CASINO NIGHT (APRIL 27th), COOPER RIVER RUN (APRIL 22nd), AND OF COURSE THE OPPORTUNITY TO BRIGHTEN YOUR SMILE (check out the fundraiser page) ……….WHICH WILL SURE BE A PART OF ALL THESE EVENTS IF YOU JOIN US!
4/16 – With all the rain yesterday we are definitely building an ark we already have Max our new puppy to lead the way. Max has quickly found his spot in our home and everyone’s heart especially Richard. Last evening Richard headed to dinner with the three Nicks at his favorite Japanesse restauant. Today we move into a new direction with a new course of therapy for recurrent lung infiltrates while we continue with 4/10 radiation to his skull……new additions, new challenges……some of the additions are challenges.
4/15 – Sunday and there’s lots of activity around our home just in time for a Northeastern – we have the arrival of Max our newly adopted 8 weeks old Westie, Matt & Bret, and Aunt Heather & Grandma Candy are also in town visiting. Richard’s very happy about our new addition – Max. Yesterday Richard hang in Philly with friends at an inline jam session – today just hanging inside with our new addition and friends so we can keep dry.
4/14 – Yesterday’s CT Chest revealed yet another challenge similiar to what we were dealing with a year ago at the start -not missing a beat Richard headed off to Tim H’s for poker. Now today we continue moving quickly beyond our current challenges by adding a little bit of positive energy to our home with the adoption of a Westie puppy – Rex, Roco, Max, Lucky – Richard’s excited but not nearly as excited as Christopher who has stated for some time that he only dreams about dogs. Nothing like a puppy to add some sunshine……….
4/13 – Yesterday was a late morning for Richard – really it was more like an early afternon after a 1am poker game at the Hak’s and early morning headache that required some medications he ended up sleeping in until 1pm. This left plenty of time to make it to Penn for his 4:15pm radiation treatment. Today 3/10 raditation plus CT Chest at 5pm. The weekend calls for friends Brent & Matt to come in plus Grandma Candy.
4/12 – Still on Easter break so rest today after an uneventful first radiation treatment although late night of poker playing at the Hak’s – today physical therapy at 3pm and then to Penn for radiation 2/10 at 4:15pm. Yesterday was nice hanging with Richard instead of traveling to San Diego for a meeting – quality time is one thing but there is a great deal of quality time that occurs at quit ordinary moments…..but I guess there really is no such thing as ordinary instead every moment is extraordinary.
4/11 – Today 1st radiation treatment at 3pm with PT before that. Yesterday was a busy day with a 9am radiation oncology appointment – blood work – nuclear med injection – PT – lunch in South Street……cheese steaks – back to CHOP for full body bone scan & platelets – hemoglobin almost 11 so no need for packed red blood cells. In at 9am out at 3:30pm…….long day although we did have some smiles on South Street. We had some more smiles later when we learned that the bone scan looks good so that we are only faced to deal with the lone skull lesion which will be treated with 10 courses of radiation starting tomorrow and finishing April 24th. Still have a CT chest & bone marrow to determine what’s the course after radiation.
4/10 – Bone scan, radiology set up & blood today at CHOP………much different then yesterday.
4/9 – Changed our flights to take advantage of a day together before a Tuesday filled with tests in advance of radiation therapy on Wednesday. Today we slept in a little then made it through all the major Universal rides before catching a 7pm flight back.
4/8 – Easter Sunday – early morning Easter egg hunt then off to Magic Kingdom at Disney – Space Mt, Buzz, Pirates, Splash, Thunder then monorail to EPCOT – Beaches & Cream for lunch – then MGM for Tower x2 & one Rock’n Roll – not over yet – dinner @ the Palm then Richard, Nick C., Tim & Mary Kate closed Universal with a few rides closing show & even an inroom movie before calling it a day.
4/7 – At Hard Rock in Universal Studios – Richard & Nick C. slept in after late night of steak at the Palm with family & friends then a movie in the hotel room – today we got in both Universal Parks – big lunch at Bubble Gumma’s for of course shrimp – little arcade action then back to the Palm for dinner with 9 – not done yet off to the theater for Blades of Glory.
4/6 – New challenges bring new resolves – Richard continues to make the most out of ever moment – yesterday an article in the WSJ (posted on the “Thriver” page under positive attitude) really crystalized this resolve to make the most of every moment and take advantage of the gift of every day……..something that Richard has always done. Well wishes to aid in this new resolve are always appreciated. ESCAPING TO ORLANDO WITH THE HELP OF GRANDMA CITY FOR THE WEEKEND.
4/5 – Tough day yesterday – MRI showed a new singular skull lesion without any brain involvement so a new plan of action is being developed which will include radiation and eliminate Richard’s last course of chemo. In usual Richard form he attended a full half day of school & then headed to CHOP with Nick C. at his side. Immediately after the MRI we were at Chickie & Pete’s for Crab Fries, wings, & Crabs……….Today no school as the Easter holiday has begun – Richard will head to CHOP for a recheck of labs & PT. We remain committed to our goal – staying focused on making the most of every single moment……starting with this weekend when the entire gang will be heading to Universal Orlando from late Friday night to Monday morning.
4/4 – Today Richard’s back to school for a half day – good to be back with friends – then its off to recheck blood work & some additional studies to evaluate the new bump. During this new issue its more important then ever to remain focused on our single goal & stay in the moment – not getting to far ahead or dwelling on the past – just another bump in the road toward our goal.
4/3 – Tough day yesterday at CHOP – Richard needed platelets for a count of 11 his blood count came up well after Friday’s transfusion. The new fly in the ointment is a bump that developed on the back of his head. Obviously any bumps are a concern so we spent the day checking it out – actually we spent most of the day waiting to check it out. We couldn’t get in for a CT until 7pm – it showed that it was not a brain tumor pushing out – thank God – but it could not be determined if it was a skull lesion to be concerned about or a simple hematoma / bump. Today the CHOP team will get together to determine next steps. Last night after word that it wasn’t a brain tumor Richard took that as great news and went out for dinner at his favorite Japanesse Benehana type restauant with his gang and then because of no school today – to Nick C. for the basketball finals. So for now we have a mystery on our hands which we work to answer while we remain focused on our goal and making every single day count!
4/2 – Tough weekend – it’s amazing that during this year it has always come down to three issues – nutrition, attitude, and immune system. This weekend saw Richard and his team touches upon all three – with a white count of 0.1 so everyone was a keen to hand washing and infectious prevention. With a little over a week since his last treatment nutritional intake continues to be a fight – a picky eating combined with chemo is a tough combination. These two issues made maintain of a positive attitude tough but thankfully by Sunday night all three seemed in line. Today an early morning visit to CHOP is on the schedule to make sure everything continues to be moving in the right direction.
4/1 – April Fools…….although we are seriously investigated an addition to our family it will be of the four legged variety and probably sooner then 9 months. We are very focused on our current family and working with Richard on this goal. Yesterday it seems he turned the corner after a long recovery from the lastest round of therapy. We are all looking forward to a quiet Palm Sunday.
3/31 – Not that we didn’t already have our hands full but it seems like “mystery” is not the right word to describe the addition that we are now expecting in 9 months. We are sure that big brother Richard will be as excited as the rest of us.
3/30 – Today CHOP for lab work – as always Richard’s a mystery regarding where the numbers will end. ………..Tough at CHOP……long 2 units of packed Red Blood Cells and a large bag of platlets – when Richard finally got home he was really wiped out but happy to be in his open bed.
3/29 – Slow bounce back from this last course but Richard is showing some progress.
3/28 – Today Richard will begin in-house tutoring as he begins his recovery. Tomorrow plan on checking the numbers to determine where Richard is at.
3/27 – Slowly coming back after a full packed treatment on Friday – Richard will continue his road back which will include PT, school and lab work checks on Thursday.
3/26 – Today after a really tough weekend Richard is making his come back -
3/25 – Today’s Nicholas’ Birthday – Richard’s not yet up to much celebrating after his lastest round of therapy that packed everything into one day with the same intensity of a longer course. Today’s more rest and recovery for Richard although I’m sure that we will be bringing some of the party to him.
3/24 – Recovery from round 13/14 begins – just rest and relaxation and some friends if Richard is feeling up to it. But mostly rest and relaxation while the rest of us get ready for two BIG fund raisers for Go4theGoal Foundation – Casino Night at the Cherry Hill Racquet Club and Walk at Cooper River………get ready.
3/23 – Today Richard made numbers by a hair so he got in his quick treatment – spending the entire day in the day hospital at CHOP took alot out of Richard by the time he got home at 6pm. Tonight just rest and relaxation in his own bed.
3/22 – School today plus therapy – Richard continues to work with his team to build up his shoulder and arm so that he can continue with snowboarding. blading, and surfing.
3/21 – Today Richard is off to school and that’s it. No blood work or PT today. Plan is to try to get the next round in on Friday.
3/20 – Richard’s numbers were truely amazing – given how he riped up the mountain it’s hard to imagine what he would be like with a normal hemogoblin. His hemoglobin was less than 9 yet he showed no signs of anemia/fatique. His platelets are still less then 50 and need to be at 75 for therapy so it won’t be until Friday that we try to get the one day course of therapy in – until then it’s school and PT. On a side note – Morgan was accepted into Friends School which we are all very excited about even her older brother….seems like there is no stopping anyone these days.
3/19 – Back to school after a truely fantastic weekend. It’s funny we road the chairlift one time with an instructor from north jersey – he was impressed on our dedication to skiing having driven up Friday through the big storm – it made me smile because of course it’s not our dedication to skiing but to living that drives us. Richard is scheduled for a day treatment which will happen as soon as his counts are adequate – probably not till later in the week…..so for now its school, PT, and stories of the perfect run.
3/18 – Another 10 inchies of fresh powder last evening and more coming down. What a difference a day makes. The guys had the drill down perfectly. At the mountain around 8:30am – signed Chris up for morning snowboarding lessons while the rest of us made some runs down from the top of the mountain. Richard hit the slopes with his usually passion but really enjoyed the later part of the day. After a big lunch – the crowds left, the snow stopped falling & the sun came out to make for some perfect runs. The runs were so good that we didn’t leave until we were kicked off the slopes. Truely a great ski trip all the way around!
3/17 – hit the slopes for the opening at 8:30am – Richard was so excited he had trouble sleeping. The first half of the day took everyone time to get used to not skiing this season especially on two feet of fresh powder. Richard needed a little break in the afternoon but hit the slopes later for some good runs before heading back to our room for showers & resting before dinner. Dinner was at the Manchester branch of AB&G’s (small world catagory). The focus of the weekend has moved from being spectators at the 2007 USA Open to focusing instead on our own snowboarding……….after all life’s not a spectator sport & this weekend certainly illustrated that point.
3/16 – Left 5:30am for Long Island to pick up Richard’s exoskelton which is a key piece of equipment for this weekend’s snowboarding trip. Leaving Long Island around 10:30am we fought driving snow making it up to the mountain around 5pm. After a skiier’s dinner we got to bed early.
3/15 – Busy day of school and then CHOP for more falling exercise and platelets – all of this in preparation for Richard’s early morning departure to NYC for his exoskeleton before heading to the Stratton slopes for a guys only weekend aka NGA (no girls allowed) – Richard, Nicholas, Christopher and Tim H. Last evening we went to our new favorite restauant – a sushi place that we discovered – first with Christopher on Tuesday night and now on Wednesday evening with the boys. Lots of good food, family and fun going on.
3/14 – Yesterday in PT Richard was taught how to fall correctly without injuring his arm – as we get ready for summer and removal of Richard’s catheter this may in fact be a need. It seems Richard is quickly moving into the life of a very active high schooler – this is of course not to mention that during his entire course he has been very active – successing in high school, traveling at every opportunity, and being a true champ during his long treatments. Today more high school has spring fever sets in….the good kind of fever.
3/13 – Richard did get his numbers checked yesterday and they were all heading up – white blood count was great, hemoglobin was good, and platelets were trending up and at a level that they did not require transfusion. School counts to go well and with all the stars aligned we are taking advantage of no school Friday, nice weather, a snowboarding contest at Stratton, and most importantly Richard feeling well to take a “guys” trip up to the slope and so all the Stefanacci men plus Tim H. will be traveling up north on Friday for the last blast of winter 2006/07….will be great fun.
3/12 – Great weekend of just being a regular family – Richard hung with friends, playing games and going to the high school muscial, Nicholas also got to hang with his usual gang, Morgan got in her acting class as well as receiving announcement from the Conserve Wildlife Foundation that she won 1st place in rhe Species on the Edge Art & Essay Contest, and Christopher got his equipment for baseball and continued his search for the perfect dog – both of which he is extremely excited about……overall a great “regular” weekend.
3/11 – Late night made later by an early daylight savings time but Richard continues to recover and spend time just as a high schooler should – friends, late night at the high school play, late lazy morning.
3/10 – Richard continues to bounce back strong – getting a half week of school in, tutoring, PT as well as a few cheese steaks, blood and platelets. Today resting & hanging with friends. Through this whole process Richard has had one goal – to be a “normal” high school kid. That is not some distant goal but a dailly one that relies on a positive attitude, dealing with adversity while taking advantage of opportunities. Each day is truely a gift – the goal is making the most of that gift.
3/9 – Blood day – Richard’s off early this morning to CHOP for some more blood and speaking of blood Camden Catholics blood drive broke records for participation at a high school. Last night we had a family dinner and discussed dogs and family trips both of which had surprizing turns. The dog conversation just becaues we were even having one – and the trip conversation because most of the crew but especially Richard want a summer of hanging out with friends and remaining local – lots of surprizes….
3/8 – WOW – Richard has really bounced back with regard his attitude – last evening after a full day of school and tutoring he went to Tim H’s for a little poker. While his attitude has bounced back his numbers are still heading south. Yesterday he needed platelets and may need more plus some blood on Friday. Today it’s school and then family dinner with Survivor to follow.
3/7 – Right back to eating and with a great spirit so nutrition and attitude are in check – will continue to monitor immune status and the possible need for blood as we get closer to the 1 week mark but for now the recovery continues. Yesterday Richard had a great PT session with increasing strength shown by heavier weights…….continue to progress.
3/6 – Richard continues his recovery quickly – not sure if it is the fact he always does better on the 5-day course or the reduction of dose or how well he went into this course – most likely it is all of those but especially Beth’s TLC that is resulting in his fast bounce back. Blood drive at Camden Catholic today which given the amount of blood that Richard has been using and the tremendous need for this is very important.
3/5 – Nice quiet weekend – Richard rested as his appetite slowly returned. We also were visited by the Warshauers and Echo & his parents although Richard stayed out of the action. And speaking of action talk continued on an additional to the family while Dad was preoccupied by his first self inflicted fender bender ever – seems the Esclade is too big a car for him. Today Richard is off to CHOP for a routine echo cardiogram and lab work.
3/4 – Quiet although with some visitors – Richard continues to recover slowly from his latest course of therapy – yesterday he hang out playing some video games but is appetite has yet to return. Today promises more of the same with the introduction of some friends and food. Lots of discussion regarding the addition of a dog to the family…..much more to come on that subject.
3/3 – Home around 6pm last evening – quiet week at CHOP which will probably be the course for the weekend as Richard slowly recovers from a week of therapy. Everyone is getting spring fever – looking forward to the end of a very long season and the beginning of a new one. Lots of spring cleaning and starting a new…. LATE ENTRY – with all the excitement of Richard’s departure home I forgot to mention a bite of joy – Nickie went to pick up a basketball pole with Mimie & Papa Stefanacci after the Grandparents mass at St. Pete’s. The basketball pole game in a shoe box with as many pieces as one could imagine. Nickie, Tim H. & some friends spent hours picking it together and at the end Nivkie proudly waited for his older brother at the end of the driveway to show him their new play area. And speaking of Grandparents I also failed to mention Grandma Ann & Grandpa Dave who continue to provide tremendous support bedside allowing us to tend to the rest of the story – well I think this really covers the rest of the story!
3/2 – Friday’s finally here – will be a long day of wait today as Richard looks forward to getting home to his own bed for rest and relaxation.
3/1 – One day closer to getting home – today Richard’s just hanging out anxious to get home and have a restful weekend at his home base. To everyone’s pleasant surprize Christopher made it to Disney Radio once – second time in less then a month.
2/28 – After a day of deep rest Richard spent today up working on his computer thanks to the high spend connection availble right from his bed.
2/27 – Richard’s in at CHOP for his 5-day – he did get some very good news yesterday regarding his next round of therapy which will be done in the day hospital – in and out the very same day. But for now it’s pushing through this round of therapy.
2/26 – School is Open Today – so Richard is off to Camden Catholic today and then CHOP for around a 2pm admission for his next round of therapy. This is a 5-day course so we will all be focused on nutritional support and mental attitude – going into this round both are at a high. Richard is at his highest weight as well as being mentally ready (as much as you can be) after an extra long period of time off since his last round.
2/25 – We had a wonderful weekend – Richard had a fantastic time at Austin’s Bar Mitzvah and wanted to hang out longer in NYC but we pulled the plug wanting to get back home before the winter weather headed in – the Bar Mitzvah was inspirational, immediately followed by a warm family brunch at the University Club – then a little R&R back at the hotel. The R&R was needed because of the late night party at Crash Mansion in SoHo which was 5 hours of heart pounding fun and games. This morning we all enjoyed a lesiurely brunch at the Ritz Carlton with Aunt Colleen, Uncle Andrew and the entire family including Grandpa Bill. Now we are at home resting again in preparation of school and then CHOP for therapy session #12/14.
2/24 – It’s here – the big day – Austin’s Bar Mitzvah…… Richard has been waiting for this day and more importantly to him the evening celebration for some time. This is the ideal way to lead in to his 12th out of 14th treatments which will start on Monday and run for 5 days. More on the celebration to follow…….
2/23 – Today Richard needed to cut school short secondary to a headache but thankfullty without any fever. A little time at home and he was calling friends making plans. It should be an early night as we are waking at dawn to head to NYC for the Bar Mitzva and all white party although a Glew All White Party doesn’t seem possible…..we will see. On an interesting note we had a little fender bender today while the car was in line at the car wash instead of getting reimbursed for the repairs we asked that a dontation be made to Go4theGoal Foundation…..funny how you can turn even a problemed situation into positive one!
2/22 – School today and then off to CHOP for PT – building up body and soul in preparation for the Bar Mitzva this weekend and then therapy on Monday. It seems like this period off has really helped out with preparation for these upcoming events….”Proprer Planing Really Does Prevent Poor Preformance.”
2/21 – Even though it’s a school night Richard hung out at Nick C.’s – sometimes you make adjustments based on the situation. Richard continues to do well and more importantly enjoys his first year at Camden Catholic which continues today with a full week of school.
2/20 – Back to school for Richard after almost a week off for snow and holidays. The rest has certainly readied Richard in body and soul for this weekend’s Bar Mitzav. Today after school it’s off to CHOP for PT rehab of his right arm and strengthening to prevent injuries.
2/19 – No School again today – like a mini vacation Richard has been resting and relaxing which should have him in good form for the big family function next weekend and just as importantly his next round of therapy.
2/18 – Balancing slowly coming back into play. Spent yesterday doing family stuff. Last night Richard, Nick K. and his brother Nick hang out playing video games. Today more family stuff planed – church, homework, and dinner at the Continential mid-town…..it’s all about the prior balance.
2/17 – No school again today – well after all it’s Saturday and a day of rest is certainly needed – Richard because of his freshman party & post-party celebrations that carried passed midnight – mom & dad because of some ongoing sleeping issues within the family – rebalancing is the name of the game this weekend; hopefully with a little help from mother nature.
2/16 – Well it’s been snow days x two and now today Richard has a freshmen holiday which resulted in a frat like sleep over last evening. So this meant that this morning was a slow one. but tonight it’s a freshmen dance so I’m sure Richard will have new life for the occasion followed by a late lazy Saturday.
2/15 – It’s amazing what an unexpected snow day can do – Richard and the rest of the crew seem to be back online – today school and CHOP for PT.
2/14 – Last evening was a late night of deep family discussions about all of the issues we are involved – it’s surprizing but we have been so busy living life that we haven’t stopped to discuss how everyone was dealing with Richard’s situation which obviously reaches everyone in the family. Well as you can imagine there were some tears but lots of laughter too. This morning we are all going to be hoping for a snow day so we can stay under the covers all together as a family and just stay together before the real world invades our every waking moment. LATE ENTRY…..SNOW DAY!!
2/13 – It’s looking like the snow is not going to materialize so Richard will get a full week of school in. Today he is heading to CHOP after school for physical therapy and a recheck of his blood levels.
2/12 – A few week of school planned ahead although as with everything in life it truely is a mystery – may have a snow day or other special event pop up that changes the plans. Other then that only physicial therapy on Tuesday and Thursday at CHOP with a recheck of Richard’s numbers on those days.
2/11 – Sunday a continuation of the rest & relaxation with the addition of a little religon. A bunch of the Stefs are coming down for church & brunch. This week looks like the “s”s – school & snow.
2/10 – Some rest and relaxation today after a very busy week of working hard and playing hard.
2/9 – Tough morning getting up after a fantastic evening thanks to Uncle Randy & Uncle Jack C. – Richard, Nick K. & I were so close to the action we were almost hit by flying snowboarders. An unlike watching from the slopes we were able to grab a Starbuck’s, put on warm sweat soaks from Puma, and get a gourmet mwal at Todd English’s Olives – it’s certainly nice to be in NYC Union Square. Today Richard is off to school having fallen well short of the numbers needed to start therapy. With platelets of around 40 and coming up very slowly the next round od therapy is not expected until February 26th so Richard can attend his cousin’s Bar Mitzvah. This leaves lots of time for food, family, friends. & fun.
2/8 – Today Richard is aheading the Union Square in NYC after school for a snowboarding jam session. As mentioned yesterday this is thanks to Uncles Randy, John & David. This should help Richard got his seasonal taste of snowboarding which has been sorely missed this year.
2/7 – Yesterday was a giving day – Richard gave his name to a blood drive at his high school – Richard choosen to remain out of the spot light on these activities wanted to remain focused at the goal at hand – becoming a healthy high schooler. The other bit of exciting news yesterday was Christopher’s appearance on Radio Disney where he answered a question correctly to win a prize and get on the radio….this put a smile on everyone’s face. Today no CHOP just high school. Tomorrow Richard is planning on heading to NYC Union Square for a snowboarding jam session – thanks to the help especially of Uncle Randy but also Uncles John and David Richard and his friends may get up front and personal during the sessions which will certainly help fill the snowboarding void the resulted from missing out on this season.
2/6 – Good numbers yesterday except again for Richard’s platelet count which continues to be low – yesterday it was 22 – 75 needed to start the next round of therapy so that’s not going to happen this week but next week still possible. Today is more school and CHOP later for physicial therapy.
2/5 – Back to school today for Richard and the possible start for the next round of therapy. Today marks the two week mark since the start of Richard’s last course of therapy so he could technically start this next 5-day course any day. Lots of mystery here although we will be at CHOP to see where Richard’s numbers stand today.
2/4 – This was really a weekend of balance – Richard got back to high school weekend freshman stuff – hanging with the Nicks. Whole Mom & Dad got a weekend of health, fittness, and rest with the help of Ann & Dave. It’s amazing how quickly all of seem to recover but it also points out the important of balancing mind, body, and soul for all of us despite the craziness that we are involved.
2/3- Yesterday’s numbers for Richard were somewhat better although his platelet count remained down requiring him to get more platelets on his after school visit to CHOP. Right after that he was to Nick C. where he hung for the night and plans on hanging for the day.
2/2 – School for a biology test today and then Richard is off to CHOP to recheck his blood counts – likely given that his platelet count was 2 on Monday that he will need some more platelets. Weekend will be friends, fun, & football with Tim & Mary Kate leading the charge. Too bad the Eagles aren’t a part of this weekend but there is always next year especially since the Flyers and 76’ers’ season is already over!
2/1 – Back to school today after yesterday was side tracked by an early morning trip to CHOP so Richard could have his engine tanked up. He was to go in after school for 2 units of blood but was dragging so much that he went in early but today it’s school and then to CHOP for therapy. Tomorrow the plan is for a check of his platelet count as he will likely need some more given his last level was 2. Uncle Mark returned to tonight to help assure Richard got a good dinner and more importantly a non-parent adult to talk with.
1/31 – 2 that’s right 2 – Richard’s platelets which normally are 150 and needed to control bleeding were 2 – so he received a bag of platelets and is back hanging like nothings was ever wrong. What once would panic has through months of training become an accepted process. Today Richard will receive packed red blood to help bump up a hemoglobin of 8. Lots of blood this week although Richard has been hanging in with school & hanging with friends.
1/30 – Blood work 8am then Richard is off to high school before heading to CHOP for physicial therapy – although on the way I am sure there will be a stop on South Street for some cheese steaks.
1/29 – Back to school today for Richard after having a great recovery weekend of food, family, friends and fun and a little bit of extra studying. Tomorrow we will see Richard’s blood count numbers so we can assess the start date for his next round of therapy.
1/28 – Family and friends continues for Richard today as he continues to bounce back as we all keep a watchful eye on nutrition, immune strength and positive attitude.
1/27 – Today Richard is getting back to being a teenager – hanging with friends, going to the movies, and eating ice cream. Although it was not all fun and games today but Richard did get some tutoring in to make up for the week off from school last week while he worked to bounce back from therapy.
1/26 – Slow and restful seem the themes for the last few days for Richard post-therapy – this should start changing with the weekend coming up and the availability of friends to hang out in the game lounge.
1/25 – Richard had a restful day of hanging out sleeping and playing video games still having nausea but continues to get better. Today will see more activities and hopefully increased appetite so he can begin the process of building back up to get in shape for the next round of therapy.
1/24 – Home last evening at 8pm – Richard will probably spend the day resting so that he can get to freshmen high school stuff……….school & friends………not necessarily in that order.
1/23 – Lots of pleasant surprizes yesterday at CHOP – Richard is up to 95lbs gained 2 over weekend & because of his therapy reduction dosing he will be discharged tomorrow night at about midnight. Richard could not have been happier either could any of us……………the Disney magic continues.
1/22 – Early morning departure from Orlando back to PHL so early in fact that Richard will still get to school & CHOP to check labs – which have just come back as great so he will be going into CHOP for his next round of therapy which is a 3-day course.
1/21 – MGM again this morning where we ended the day yesterday for some more Tower then a quick lunch at Beachs & Cream where the team split up with Richard heading back to rest in preparation for a late night at Magic Kingdom. Dinner was at Todd English’s BlueZoo before we all headed to Magic Kingdom for some late night rides & fireworks.
1/20 – Off to Animal Kingdom for some shows & safari rides – seems that despite Richard being to AK countless times some how Chris had missed out so it was his time to catch up. Afternoon was time for rest & relaxation at the hotel before heading over to MGM for a quick trip on Tower of Terror and more filet at the Brown Derby with funnel cake deserts on the Boardwalk before settling in for the night.
1/19 – Lazy morning exploring EPCOT followed by lunch at Beachs n Cream – Richard then got in his daily dose of filet at the Yachtsmen Steak House before heading back over to EPCOT. The miles of walking got to Richard who headed back with Beth……tomorrow we’ll have two wheel chairs as Morgan is still recovering from her broken foot – this should help the gang hang in there longer…..although even the rest of the crew called it quits after just 3 rides which was still past everyone’s usual bedtime.
1/18 – Because we have learned to take advantage of opportunities – Richard has been feeling well and won’t start his next treatment until Monday and he his off from school so the family is off to Disney. It’s off to the Yacht Club for a few days of family R&R…..more to come.
1/17 – Some good number but the one that matters wasn’t where it needs to be. Richard’s blood work yesterday revealed his white count and hemoglobin to be good but his platelets were 29 – they need to be 75 for therapy. So Richard won’t start his next round of therapy today but rather will be rechecked on Friday when he gets his Epogen to keep his counts up. More likely his platelets won’t be where they need to be until Monday.
1/16 – Richard is off to school for mid-terms then off to CHOP for blood work and PT. His blood work will reveal when he is able to get his next round of therapy. He is due for his next round any day now it is in fact only dependent now on his lab work. Yesterday’s trip out to Long Island was productive – Richard had a fitting for his exoskeleton which will provide some added protection to his humerus, shoulder and elbow……should be already for next snowboard season since this one was over before it got started.
1/15 – Early morning departure out to Long Island for the Richards to pick up Richard’s exoskeleton at A Step Ahead. This after a very enjoyable and restful weekend / despite the loss of our Eagles. Yesterday the entire family plus Mimme and Papa driven by Uncle Chris plus Tim H. took over the round table at Cheese Cake Factor for a very enjoyable Sunday brunch after church. Richard continues to build up his nutritional status, immue system and attitude…..all needed for his mid-terms and next round of therapy which will start as soon as Richard’s numbers show he is ready.
1/14 – Well it was certainly a powerful coincidences or omen yesterday when Richard received two boxes. The first that he opened was from the “Joshua Kahan Fund” it contained a football signed by Trotter and glove signed by Dawkins – the other package which came from a wonderful teacher of Fr. Jon Parks in New Orleans – Teacher Guyann Murphy contained a Saints head & t-shirt plus some very special notes from her students. Perhaps as a testimont of the power to overcome tremendous adversity the Saints (not a bad name either) beat our Eagles 24-27 again. So Richard was forced to suffer through the loss surrounded by real Eageles fans gathering at Nick Cs. Today studying and football although for the football at least not with the same intensity of last night.
1/13 – Richard’s just about back from his last round of treatment – last night he hung at Nick C. after a long day of high school exams and blood at CHOP. Today more studying for mid-terms but today a break for the Eagles game – keep your fingers crossed. Game is not until 8pm so it’s going take a little resting at some point today to make it up that late especially for the senior members of our team.
1/12 – Lab work yesterday showed Richard’s white blood count ok but his hemoglobin was low and his platelets was very low (10). So Richard got his platelets and physical therapy yesterday and today set to get packed red blood cells plus finals…..talk about a full plate. Of course the reward is a weekend of studying and Eagle football.
1/11 – Off to this morning early for a lab check at the local CHOP center with plans if needed to go to Philly later for blood. In between all of that Richard will be studying for his mid-terms…..lots of fun.
1/10 – Richard today and tomorrow studying for finals but possibily with a study break at least tomorrow – a trip to CHOP to recheck his blood levels and perhaps get more blood if needed as we are going into a 3-day weekend and then more finals. But of course in between that is a big Eagles game which will make a better (hopefully) study break then the one planned today.
1/9 – Yesterday was a long day – Richard wanted to go to school but was dragging which came as no surprize when all his numbers came back in the basement. White count 0.1, platelets 11, hemoglobin 6.9…….as a result he needed platelets and packed red blood cells. Today studying and readying for finals as he waits for his body to catch to where is mind & soul are.
1/8 – Eagles win a close one so we get one more week of celebrating in Philly – this will certainly help everyone’s mood including Richard as he goes through final weeks – looking forward to the getting through these finals and through the Saints next weekend. Today Richard is off to CHOP to recheck his labs and possibly get some blood if he needs it – though to say if he’s up from because of the Eagles or if he really needs some blood.
1/7 – Eagles today and hopefully next week too but to get there they first have to beat the Giants. Having a few friends over for the game will serve as a good study break for Richard who has been busy preparing for final exams. Just as an fyi the gang at the Cherry Hill Health & Racket Club (www.chhrc.com) is planning a Casino night for Friday March 23rd so mark this on your calendars and get ready for some fun for a cause – the Go4theGoal Foundation.
1/6 – Yesterday’s numbers were very good, good, ok, and not so great. Very good was Richard’s white count, good was his hemoglobin which didn’t require a transfusion, ok was his platelet count which although lower then the point needed for his next round of therapy was also not low enough for a transfusion – and ‘not so great’ was his weight which expectedly took a hit after this 5-day course. Immune system, Nutrition, Attitude…..this match toward the goal is really that simple. Obvious focus is on nutrition while working to maintain Richard’s positive attitude especially as he enters finals week in school……of course his immune system needs to be watch as the rest of us suffer from prolonged colds partly as a result of the lack of a good freeze this winter. Lots of stuff and it gets confusing at times especially when it’s January 6th & 70 degrees in Philly – it’s all about staying focused on the goal while adjusted to what life throws ones way.
1/5 – Off to CHOP today for blood counts and EPO (medication to keep his Platlets and blood counts up) – it’s always a mystery as to where Richard’s numbers will land. His has been recovering slowly on his way to his next course of treatment but before that he has final exams and we all have the Eagles on Sunday or as others are calling it the North against the South.
1/4 – Richard’s recovery continues to progress following his latest round of treatment – last night’s craving was for Salt & Vinegar Potato Chips…. what ever it takes to get his weight back up before his next round of treatment which is just two weeks away. Boy how time flies.
1/3 – Richard returned home yesterday to find his team battered – Christopher’s was out with a cold over the weekend keeping him out of school yesterday then while running up the driveway Morgan twisted her foot – x-ray revealed a 5th metatarsal fracture. So she now has a cast – and they say skiing is dangerous. Today Richard & his team will start the road to recovery…………….
1/2 – Boy it’s tough being a young teenager, it’s really tough being a young teenager who’s spending the holidays in the hospital while working to achieve a goal that requires a year of therapy…….as involved as we are in healthcare this is tough to imagine. Richard has been weathering this course with flying colors. He’s set to get home today and start the road to recovery. Of course during this recovery there’s a big Eagles game as well as some other special surprizes I’m sure.
1/1 – Well just like the Eagles games NewYear’s Eve was over early. Everyone hunkered down early to rest up for the busy days ahead plus having the team split up with Beth and Richard at CHOP and the rest of us home with the Buffa’s it still didn’t lend itself to our usual celebrating….oh come to think about it we typically don’t do a lot of partying just some private celebrating. hat Actually there is a little bit each day to celebrate and I’m sure we’ll find something today….for example Richard is one day closer to finishing treatments.
12/31 – Yesterday Richard received some medication that really snowed him – this morning he is finally coming out of it just in time for the Eagles game. He was so snowed yesterday that he missed the Boston College game which was an unbelievable game with a fantastic finish. For those few of you that missed it a walk on kicker made the final field goal with no time left for BC to win over Navy 25-22. Hopefully the Eagles will have the same luck today and Richard will be up to enjoying the game with family and friends – which include the Grandparents and Buffa’s amongist others. Then once the Eagles celebration is over I’m not sure there will be much left to celebrate at midnight – more likely we will all be safely a sleep well before the ball comes down in Times Square but this is not to say that we are not looking forward to a new year…..
12/30 – Richard made it into CHOP yesterday for his 5-day course but before going in he stopped by his cheese steak place on South Street with Nick K. – this admission appears to be centered around football. Today we have the Boston College bowl game & tomorrow the Eagles. In addition to those games & countless others Richard also has his XBox360 for his own football games. Nothing like bring the party to where it needs to be – Grandma & Grandpa City fly in as usual to help out.
12/29 – It really was a big move forward yesterday as the team at A Step Ahead started building Richard’s exoskeleton which will protect him as he continues to snowboard, inline skating and surfing. Today Richard is off to CHOP as he enters the home stretch – this is a 5-day course so unfortunately we will have to bring the New Year’s celebrations to Richard.
12/28 – Early morning off to Richard’s prosthetic company (http://www.astepaheadonline.com/ ) where they are working on an exoskeleton to protect Richard during snowboarding and other extreme sports. In addition to this move forward Richard is going in tomorrow for his 5-day treatment ahead of schedule because of his good blood counts. Big moves forward to the goal….
12/27 – Lab work from yesterday was right on in all catogories so as a result Richard will not have to get any transfusions today so he can instead spend time with friends in Philly. This also means that Richard may be back on a 2 week therapy track so that means he may be back in as early as Friday for a 5 day course but as always that is still a mystery for today it’s just hanging with friends.
12/26 – Richard has a good a day as it gets – a few special gifts – special friends – and special Eagle victory over the Cowboys to round out the day. Today will certainly be different then all that. Tutoring for part of the day because of the work he missed over the last two weeks of school – then off to CHOP to check his blood counts and receive physicial therapy. I’m sure even with this busy work schedule there will be some special holiday kid time.
12/25 – Merry Christmas – not sure exactly when Christmas started – it seems just like birthdays these are more seasons then days. Last night gifts were openned in the car on the way back from the Finelli’s. Then we made it back in time for the family to attend mass. Today Richard who as you have heard is not much of a morning person was up at 6am to see what Santa left under the tree. The real gifts were deliveried at CHOP to the kids on the oncology unit as part of the Go4theGoal Foundation holiday gift drive………..it’s always about the giving that really matters. Hopefully the Eagles will be giving it to Dallas at 5pm – we will be just hanging out at home recovering with a quiet dinner with the Mulbergs.
12/24 – Merry Christmas Eve – Richard and the rest of the family are heading out Aunt Barbara and Uncle Peter’s for Christmas Eve Dinner with the Stefanacci Family minus the West Coast Crew. Dinner will sure to include the 7 fishes and all of the Finelli favorites (ie stuffed peppers) but of course the real highlight will be the laughter and smiles on the youngest members upon the arrivial of Santa Claus. In our house Santa already started arriving as Richard, Nicholas, Morgan, and Chris started openning Christmas presents early…….it was either that or simply read about them our website…..although I am sure Richard and everyone else will be in for more surprizes as the holidays unfold.
12/23 – Long long day yesterday – Richard started the day with zero energy – needing a wheelchair to make it up to the Day Hospital only to finish the day bouncing into the house at 11pm after hanging with the Nicks. He spent from 9am – 4pm in the Day Hospital getting blood and Epogen which is a new treatment to get his blood counts back quicker after therapy. He really started bouncing back later in the morning and really enjoyed handing out a few presents at CHOP. Today will be some resting for Richard while the rest of us rush around to finish up last minute deals before Christmas. I’m sure this afternoon will involve more friends including a return of the Nicks. BTW – Richard did receive an early Christmas gift as he was invited to the Eagles practice on December 30th – hopefully they will be celebrating too.
12/22 – Early morning trip to CHOP for packed red blood cells and platelets which should give Richard some needed extra energy just in time for the holidays. The holiday celebrating starts this evening with some gather of friends to begin the holidays. This is really shaping up to be a celebration of life as each day has been through this journal.
12/21 – WOW – gifts came in different forms yesterday – Richard didn’t need blood but even without that returned home with renewed energy. Perhaps part of it came from his involvement with many other family members and friends with the Go4theGoal Foundation Holiday Gift boxes. Yesterday Gina B. deliveried 40 holiday gift boxes to the children in the oncology unit at Hackensack Hospital – well the ones who really got the gifts was everyone involved in this project. Every box contained Go4theGoal t-shirts and wristbands plus an added special gift of either an iPod, DVD player, or Ninetendo DS game system. Of course this was only possible because of the generous giving from everyone involved in the foundation – it was especially nice to get the kids involved in designing the holiday boxes as well as packing them – this certainly helps keep the true meaning of the holidays front and center in the hearts of all of us as givers of gifts……………….check out the photos on the iSpy page. Tomorrow another truck load of holiday gift boxes is making it’s way back to CHOP surely with the same reaction from all involved on both sides of these special gifts.
12/20 – Slow progress – one step forward 1/2 step back – Richard didn’t make it to school yesterday – weakness and stomach distress kept him at home. We are aheading out this morning for CHOP for a check up as this is usually a sign that he needs blood. By going today we can set up things for Friday also so that he can be set for the holiday weekend. Uncle David and Ecco made it in last evening to hang for a few days on their way to Atlanta which alwyas brings extra energy and happiness to our home.
12/19 – Try to get to school to today although Richard may want to stay home to practice his NFL Madden Football – it seems that his father has suddenly become a player. After being introduced to the game this past weekend – Richard was defeated in overtime yesterday – now there are a few other kids in the house that can’t wait for the unwrapping of Madden 07 for PS3. The Eagles v. Dallas won’t be the only big game on Christmas day.
12/18 – The Eagles did it alone yesterday – Richard choose to stay close to home rather make the trek to the Meadowlands. He’s doing ok but recovery has been sure but slow. Today Richard will sit out of school hoping to make it late this afternoon to therapy and school tomorrow and continue to build up for the holidays. A special visit is planned by Grandma Candy and Auntie Heather……tis the season for special gifts which are best in the form of visits from family and friends.
12/17 – Eagles v. Giants up in the Meadowlands – early this morning it’s 50/50 of Richard marking it. This round of treatment despite only being one day has taken a toll on Richard. Richard has said that he really wants to go despite feeling like %^&$# because he doesn’t want to let Uncle Mark down. Tough in spirit doesn’t seem to capture it. Yesterday was spent almost entirely in bed with a little break for video games and a late night viewing of “Airplane”. Recently Richard recieved from Kara and Frank P. several well wishes and gifts (many lottery tickets). These words of encouragement came from Amy Harrigan & Patrick Miller, Jesse Watters & Noelle Inquagiatu, Nell Muldoon, Larry & Carol (Kara’s Aunt and Uncle), Meegan & Bobby Wenzel, Kristen & Brian Mascis, and Kelli Carl Kyle Lizza. These special messages and support from every where especially friends that we have not yet met have really made a difference in the march to our goal.
12/16 – You didn’t miss anything – Richard was only in CHOP for a few hours for this round ot treatment. In by 9am out by 11pm. Richard is pumped for Sunday’s Eagles v. Richard’s Game so today will be restful – in the Richard sense.
12/15 – CHOP today for Richard for a blood check to see if he can get his next short round of therapy. Physical therapy has taken a toll on Richard so much so that we will be getting a x-ray today to make sure everything is ok. So much unknown going into today – whether therapy will happen today or Monday, whether there is something going on with Richard’s shoulder or is it just his extra PT……we will learn allot today.
12/14 – Richard is getting to the groove of high school plus…………..out for dinner just about every night, the push of late night snacks (especially ice cream) to improve his nutritional status, and also room for some special treats…………last night’s treat was having Nick C. hang out for some video gaming and sleep over………why keep special treats til Christmas – gifts should be openned everyday.
12/13 – Last night Richard was invited by Phil M. to the Flyers game and they almost pulled it out against the Rangers but of course they didn’t. Phil has been especially generous with his seas this season and their location more than makes up for the poor performance of our team on the ice. Today it’s more school as we wait for his Plts to come back up so that he can recieve his next course of treatment which is planned for Friday. Richard’s physical therapist continue to be impressed by his progress with regard his strength and range of motion in his arm and shoulder. During the Christmas holiday week we are planning a trip to the depth of Long Island to visit a prostetic specialist who concentrates on extreme atheltics – he his working on an exo-skeleton that will reduce Richard’s risk of injury during snowboarding and skating…..surfing will be left up to the will of the waves but it’s looking brighter that the three S’s will be back in Richard’s life – now we just have to get through these last rounds of therapy.
12/12 – NOT TODAY – again yesterday Richard did not make his counts because of platelet counts of 48 / they need to get to 75 for therapy. So it’s not CHOP today but high school instead. Of course after therapy got canceled yesterday Tim and Richard made their way to South Street for some cheesesteaks and fancy sneaker purchases. Well we will try it again on Friday to get this 3-day course in. Richard’s team is also evaluating the ability to decrease some of Richard’s treatment so that we don’t continue to these delays between treatments…….trying to reduce the mystery in all of this.
12/11 – After a successful weekend of celebrating including yesterday with the Palmeri’s Richard is off to school today and then back to CHOP for his next round of therapy. This is of course dependent on his blood count numbers…………it’s a mystery yet to be answered. The next event on Richard’s calendar is the Giant v. Eagles both fairly bad teams that are still in the hunt for a wild card place……..more mysterys.
12/10 – “Celebrate Life" – that’s the motto we have choosen this season and for the new year. That motto got a jump start yesterday as we all attended Rebecca’s M. Bat-Mitzvah. Richard was feeling good and it certainly showed although it was certainly tough to top the time had by our resident dancers Christopher and Morgan. “Celebrate Life” means much more than having a good time and partying – these were of course important parts of last evenings Bat-Mitzvah and no one does that better than Elyse and Andy M. – “Celebrate Life” means just that – embracing life and all that is worth – Rebecca choose to make sure that her Bat-Mitzvah was much more that a great party she made her Bat Mitzvah project to be raising money for the “Go4theGoal” foundation, raising several thousand dollars that she and her family presented to Richard for the foundation at this true celebration of life. Rebecca included a short note to encourage others to help out with the foundation in her invitations with a quote “If I am not for myself, who will be for me? If I am not for others, what am I? And if not now, when?” This really gets to the heart of life or rather to “Celebrate Life” – Today the trend continues although more on the food and friends side but even this much more gathering will undoubtly focus on celebrating life.
12/9 – Late night playing poker with the gang at the Hak’s which will roll into a late morning……….early afternoon so that Richard can be well rested for the Mulberg event late this afternoon. This is one of the reasons Richard was excited about his treatment being canceled this week – this gives him a better opportunity to be ‘up’ for today’s celebration. Monday we will give it another shot to see if his numbers are good enough to begin treatment but as always that is very much a mystery.
12/8 – Today Richard is off from school – one of those Catholic holidays that happen on Fridays or Mondays to make for an extra long weekend. Richard had tried to start the celebrating last evening with a sleep over at Nick C. home but some GI distress forced him back to his own home base. He’s hopeful that has passed and he can resume some celebrating which includes a very special Mulberg even tomorrow afternoon.
12/7 – And speaking of “gifts” yesterday Beth walked into Target after dropping Richard off at school and asked if they had any PlayStations – the clerk said do you mean PS2s – no PS3s – well actually we just got 4 in do you want one – of course Beth jumped at the opportunity to put this under the Christmas tree for Richard and the rest of the family. The tough part is going to be keeping them from it until Christmas as we have never been good at delaying the openning of gifts.
12/6 – Settling into a week of school after the unexpected cancelation of therapy on Monday. Richard promises to make the most out of his change in schedule as he really has been doing on all his good days…….really taking advantage of every gift.
12/5 – Richard went to school today then a busy day at CHOP – blood, platelets, physicial therapy, then more blood………………finally home for some studying.
12/4 – School today, then therapy followed by inpatient treatment…Richard has a busy day scheduled. He should start his 3-day course this afternoon this after a very busy weekend of fun and games and some studying. LATE ENTRY – Didn’t make counts PLT count only 19 needs to be 75, Hgb 8.4 so transfusion tomorrow, WBC in good shape – Richard could not have been happier……..now he’ll be in good shape for this weekend’s very special Mulberg event. Never know what’s around the corner!
12/3 – Traveling day today – traveling has always been a favorite of all of us but given the need to stay close to our home base has been limited lately. But today we are hitting the road. Richard’s getting to CT to Aunt Heather’s and Uncle Mathew’s for a b-day party then a quick dinner stop over in HHK at Mime and Grandpa’s – it’s been a while since the regular Sunday night family pasta dinner has occured.
12/2 – Richard is doing well how can you not be after hearing this story – this note comes from cousin Kim “Hi Rich – Last night I received a phone call from Ree, remember my good friend from Pa? She spoke to her mom last night who told her about a conversation she just had with my mom about The Palm, where Richard enjoys a good steak. Well, about a month ago Ree’s mom was out to dinner at The Palm celebrating an occasion with some lady friends. They spotted a husband and wife with a young boy who apparently looked like he was having a rough time of it. The parents looked very tired but so attentive to their son. Their celebration took on a different tome when they all empathized with this boy and his parents. They wanted to do something for them without being acknowledged, so they asked to pick up their dinner tab and asked to keep their offering anonymous. It was their way of reaching out and giving hugs to the family. Wll, what a small world, because that person was Ree’s mom and her friends. Love and prayers…Kim” Ree’s mom is also friends with Madeline Abramson who with her husband Len are the prinicple benefactors to CHOP who we would have the honor of meeting on Tuesday at the CHOP fundraiser….talk about 6 degrees of separation…this is probably about 3.
12/1 – yesterday we had some school issues with Richard – the typical issues of a high school boy who believes playing with friends takes presidents over studying……………I reminded Beth how nice it was to be discussing school issues instead of health problems. It is amazing how ones priorities change.
11/30 – Richard’s enjoying a relatively full week of school (Monday was a holiday so he didn’t miss anything) – school all day then therapy and then home with a crew of his friends. Attitude is certainly doing well. Today more of being a freshman with lots of good friends.
11/29 – Last evening Beth and I were back at CHOP but not for Richard rather it was for a kick off of CHOP’s “Hope Lives Here” Campaign. The goal a modest $400M so we really have our work cut out for us the the Go4theGoal foundation. Of course the goal for our foundation remains unchanged – helping children affected by cancer achieve their goals. This of course can take different path – for example we are pulling together gift packages to hand out on the oncology unit at Hackensack Pediatric Hospital. Richad is getting involved as part of his community service in working on the foundation. Richard has been active in high school and this is just one more example.
11/28 – Richard’s back home & back to school. No such thing as the status quo – constant change is the norm. Friday looks unrealistic for the next round of therapy so we are now shoting for Monday but of course as always what’s around the corner is a mystery. For now any way Richard’s attitude is great, nutritional status good, and immune system operational – these three factors have really maintained being the foundation for Richard’s march to his goal and will remain such during this entire course – the “attitude” part will of course be the corner stone for all of Richard’s future goals, which for now is doing great with family guidance and friend support.
11/27 – No school today which is a good thing – Richard is getting home today which is great for a whole host of reason including the fact that he can get ready for his dean day at high school this week. It took allot to get to be dean for a day in the Catholic tradition – it took winning a fund raising contest which is also the reason for no school today. And we wonder where Richard’s appreciation for lottery tickets comes from – Before Richard gets out he needs to get some platelets (those things that control bleeding), his hemoglobin is good as a result of him getting two units of packed red blood cells yesterday, and his white count is finally coming up slowly – now 0.4. While these numbers are all trending upward it’s tough to say whether he will be ready for his 3-day course of treatment on Monday.
11/26 – Fever admission #3 is shaping up like the previous two (thankfully) – negative work-up….boredom while waiting for his white count to recover. For now it seems like all the three major parameters are improving: immune system, nutritional status, & attitude. Richard is a getting a little help from some friends – Nick & Eamon are in to spend some time with Richard playing XBox360 while waiting for the Eagle roasting to start later in the day. Hopeful for a discharge tomorrow -
11/25 – Richard ended up in CHOP late yesterday after a tough day of following our heart and hopes rather than our heads. Richard was dragging all morning so we took him over to CHOP to check of his blood counts plus he had some low grade fevers – Hgb was 9.6….good, plts were only 15 (normal is over 100) so he did need some more plts to control any potential bleeding, white blood count still zero so he was a sitting duck for an infection. Sure enough we left the day hospital hoping that we could get away with some TLC at home but his fever returned so we were back off to CHOP via the ER for fluids and antibiotics. We still are hopefull that Richard’s fevers will go away and his white count will recover so that he can attend Matt’s surprize birthday party at a local skate park on Sunday – Richard is hoping to do a little video tapping so he can still be part of the action……..there that word “hope” again hopefully it will always be a part of our vocabulary but with a little more luck behind it.
11/24 – Recovery from Thanksgiving starts today – yesterday Richard started out a little under the weather with regards his stomach & energy level. He rallyed and hung with us for a relatively quiet holiday at home. This included visits from friends (Bill & Elizabeth I.) as well as Aunt Barb & Uncle Peter – the Maiorino stuck in for the long haul. When it came to Thanksgiving grace we went around the table each give the very typical response of family and friends – Richard was last & gave thanks for being where he was right now. Boy if that doesn’t to the heart of the matter. Later in on the day Richard had his first minor injury to his shoulder when he strained it a bit during some agressive Wii tennis – this is not the usual couch potato video game. Well things quieted down quickly and we settled in after a much needed short commute home. As mentioned today the Sanito’s are stopping by on their way back home to SC…………the cycle of friends, food, family, fun continues to help in Richard march to his goal.
11/23 – Thanksgiving today – given Richard’s need for two units of blood and platets plus the fact that his white blood count is zero we are staying close to home bases, keeping this year’s holiday relatively small. But still getting in plenty of food and fun just without the driving.
11/22 – Back to basics – school and eating – even today although this is a half day before the Thanksgiving Holiday which of course will include all of the usual ‘f’s…..football, food, friends, & family plus some fun as Richard recovers from his lastest course of therapy.
11/21 – It’s amazing how little acts of kindness have made all the difference with regard Richard’s recovery. Take for example the very generous gift from Bill, Elizabeth and Marian I. – dispite being half way across the country in Montana they sent Richard tickets for this past weekend’s Eagles game. In looking back on how well Richard did during last week’s therapy a great deal of it can be tracked to Richard’s mind being set on going to the Eagles game as a result he moved his body to go along and get him to where he needed to be. That foundation has really made for a tremendous recovery from a full week of therapy. In fact today Richard is back at school celebrating spirit week where he and Nick C. are dressed as twins. Attitude is certainly everything and those acts of kindness that help with Richard’s attitude continue to make all the difference……………thanks.
11/20 – Although the Eagles were certainly a disappointment Richard’s weekend was very successful as well as Nicholas (Wii We) – Richard made it to the game and hang in there longer than most of the Eagles players. Today we plan on starting the road to recovery from this latest round of therapy – Richard will be home schooling today but will certainly get a full day in.
11/19 – Richard started his activities as a spectator last evening as he witnessed brother Nicolas, Tim H., and Uncle John as they settled into a long night on line to wait for a ticket…..no not for a major sporting event but instead it was for a ticket to buy a Nintendo Wii. Thankfully it was a successful venture for all. Later today Richard will be a spectator once again at the Philadelphia Eagles game…..hopefully this will have the same successful results as our first team of winter warriors.
11/18 – Richard’s getting comfort at home just in time for some good football. Richard is still working on making it to the Eagles game on Sunday – so the “f”s for this weekend are football, friends, family and hopefully the beginning of some food.
11/17 – Home sweet home for everyone – Richard had a good week although we did have a major problem with CHOP – it seems they don’t quit understand the meaning of patient centered but instead continue to create policys for the staff…………just the beginning on our work to get patient centered care for Richard & all the children with cancer that prefer the safety and comfort of their own homes. Check out the new web page to see how you can help out with this issue “Richard Centered Care”.
11/16 – Richard has been in especially good mood maybe it’s because he brought in his Xbox360, maybe it’s have alot of family (Aunt Gina & Uncle John) and friends (Tim H) around. He’s been playing video games, doing therapy, and sleeping like a baby . Really appreciate the fact that this has been a good course – Richard working toward a short term goal of making it to the Eagles game on Sunday……..keep thinking positive thoughts.
11/15 – Richard has gotten into his grove of treatment and is tolerating it well. On a personal note: although I have reduced my traveling I found myself able to go to ASCP thanks to our large support team which includes among many Grandpa Dave & Grandma Ann. While at ASCP I had the opportunity to spend a quick minute with Matt C. who proudly showed me his Go4theGoal wristband – his support as well as the support that we all receive on a regular basis has been a tremendous aid in running this course to our goal……….thanks is such an inadequate word.
11/14 – slept most of the day although Richard did make it down for therapy which I’m sure was a nice break from his hospital room. Richard has spent most of his time outside his sling, in fact he only wears it now as a reminder to others no to hug to tight. His use of his arm continues and there are times when he really acts without limits.
11/13 – Richard was able to get a full day of school, PT, & Philly cheese steak before starting chemo……..very busy Monday even for a high school freshman. This is a nice start which will be a long week for all.
11/12 – Eagles today – on top of tickets for this big game – Richard has also been given field passes likes to some special friends. As with most Eagles fans the game will involve some tailgating with friends starting at around sunrise. This is sure to lay the foundation for a successful week of treatments that start of Monday.
11/11 – Lazy day for Richard of sofa and video games with some occasional studying – dinner included one of the regular places – Chickie and Petes although south streets Ishkabibble’s is now an official Richard dining facility for cheese steaks. Of course Chickie and Petes was packed with Flyers fans who are suffering from a season who is only second to Richard’s high school football program – Camden Catholic who suffered a loss of over 50 points at the hands of Don Bosco Prep (dad’s school from over a quarter of a century ago).
11/10 – End of the week which provided a great deal of “normal” high schooler activities which will likely intensify as the weekend starts immediately at the end of school today. Richard already had a big weekend planned which includes a special day at the Eagles on Sunday including a visit on the field before the game but before that there will be lots of other activities.
11/9 – Richard had a busy week of high school, social activities, and physical therapy………all going fwell. This is in preparation of a full week of chemo which starts Monday – lots of fun & games I’m sure between now and then. especially with today being a half day of school.
11/8 – Richard’s balancing of his increasing active social life continues with Andrew and Nate M. taking Richard out to met the first DH and former Yankee player from years ago. The athetic theme was also felt through a call we had regarding developing a very special device to allow Richard to continue to snowboard and inline in a safer manner……..it’s appearing that Richard active life will continue at an accelerating pace.
11/7 – Attitude and nutrition were on the menu last evening when Uncle Mark and Chris (aka AG) came now to take Richard out to Chickie & Petes for Richard’s seafood subsitute to steak – crabs. Of course it’s always much more than food when the uncle’s get together – it’s a tremendous motivator for Richard’s attitude. Today Richard’s getting more help staying well feed and motivated when Andrew and Nate M. take Richard out for a little visit with one of the Yankee pitchers with some steak……….Richard is certainly blessed by all his family and friends who continue to support him through his march to his goal.
11/6 – Yesterday saw Richard hiting the streets of Philly (Meca) with his inlines and while he did take a little fall his shoulder faired without an issue wish we could say the same for his video camera. Looks like Richard is on his road to recovery and getting back to the extreme sports that he loves. We are investigating some devices that should help him protect his new hardware especially when he hits the slopes hopefully by the end of this season.
11/5 – Movie, fast food, video taping friends skating, typical Saturday night – today while the Eagles are off Richard’s off to the freshman mass at Camden Catholic………just can’t get enough of high school.
11/4 – Richard finished radiation yesterday – now just a weekend of food, friends, and studying. Last evening we got the ball rolling with the help of the HaK’s who had a family Bonco & desert party……lots of fun. Today should be more of the same just with less gambling & funny hats.
11/3 – Today marks some milestone – last radiation treatment so Richard’s done with phase three of his care and now more to the last leg of this “Quad-athlon”. In addition to radiation being done yesterday Richard spent the entire day with his shoulder out – no immobilizer – wearing shirts with both arms through – just in time for the cold weather. In addition, Richard will see one of CHOP’s therapist to start working on his shoulder range of motion with the goal being to only use the neck sling for two weeks and then nothing. In the food catagory – the old hang outs are back in the picture with a visit last evening to Chickie & Pete’s with Tim H. If all this was not enough Richard has spent the week in school where he may have locked up the role of dean for a day by selling a large block of raffle tickets the quickest………..hopefully Richard will win as he has already started to plan out his dean day which promises to be a real treat.
11/2 – Yesterday’s appointment with Richard’s surgical went well from a medical standpoint but as with most surgeons the discussion tends to be more about absolute restrictions rather than the possibility of doing anything if done correctly – Richard and most teen boys need to hear the later and we will continue to help him match toward his goals of snowboarding, surfing, and skating again…..although there may be some new protective devices accompanying Richard in his travels soon. Richard already got a jump start in an attitude toward succeeding to his goal with a great night out at a Philly steak house with Nick C. and his family – it seems good friends and steak is the answer to Richard’s attitude – I’m sure that both will be big parts of his continued success. Nov 1st – Richard has an appointment today with his surgeon – it’s been almost 2 weeks since his surgery and we are hopeful that Richard will be premitted out of his shoulder immobilizer so he can begin the long rehab course (yet another goal). In the meantime high school activities continue full force as Richard truely takes advantage of each & everyday. Today is Morgan’s birthday and she happily told me that I was the second person to wish her a happy birthday behind her big brother – this is significant in the fact that as oldest v. only daughter – Richard and Morgan sometime mix it up like oil & vinegar but at times they come together like appreciative team mates. Richard did not go unrewarded for his efforts – several large boxes arrived at my office from DC shoes thanks to Jack D. and his son Tanner. If funny but it seems we have tapped into DC through friends that have sons working at the company on each coast…..these were much appreciated caming at a great time.
10/31 – Halloween was a treat in many ways for Richard – he is now back on track – attended a full day of school, has his numbers all back in good shape – white blood cells, hemoglobin, platelets – all that red meat must be helping. He happily attended to Halloween ricks and treats with his friends. We have attempted to lay out the schedule for the holidays with treatments on November 13th (5-day), December 4th (3-day), December 26th (5-day) – of course tomorrow’s always a mystery but we are certainly getting back on track and looking at more treats.
10/30 – Back to the routine labwork, radiation – last week for radiation then done. Still preping for round #8 of treatment which is a 5-day course and marks the half way point. School also continues to march forward although mostly out of the classroom with home tutoring for now.
10/29 – Back home today but before leaving we did get in a Character Breakfast – Chris says to each character that they are his favorite (so uncles & aunts question his solo’ed devotation). After breakfast we took advantage of the weather an took out 3 small 2-person boats – Richard/Beth, Morgan/Dad & Chris/Nick – no Titiantic like experiences. The team split – Richard/Nick game room & Morgan/Chris pool before departing back to Philly arriving just at the conclusion of anyother Eagles defeat…….well at least we had a very successful weekend which concluded with Richard eating yet another steak.
10/28 – A quick breakfast in the room before catching a cab to Magic Kingdom to get wet on Splash Mountain, check out the new Pirates, as well as Jungle Cruise & Haunted mansion. We then took the monorail to EPCOT for lunch in Japan (yes more filet mignon). After lunch it was back to the resort to relax although Morgan stayed with Beth for some QT in EPCOT followed by some QT with Dad in Magic. We all got back together for dinner at Flying Fish followed by some Boardwalk fun – finishing the night at the Yacht Club ice cream shop / Beaches & Cream for the Kitchen sink to celebrate Morgan’s birthday – 5lbs of ice cream, sauces, whipped cream, cherries & more………….then we all slipped into a sugar coma.
10/27 – Early morning departure to Orlando – we utilized the wheelchair for Richard to reserve his energy – the quickier entry to Disney attraction was a nice extra also. Upon arrival we finally settled on our rooms after checking out 6 (Richard is very particular). We immediate took off from the hotel to MGM for lunch at the Sci-Fi Diner where thankfully Richard’s appetite kicked in. After a few tame MGM rides we went back to hang out at the hotel and get in dinner in at the Yatchsman Steakhouse. This started Richard & Christopher’s steak eating contest – which included lunches as well as dinners. After dinner we head over to EPCOT for two twlight trips on Test Track as well as Iminagination before crashing at the end of a full day.
10/27-29 – Family Disney Weekend – we will fill in the blanks as to what goes on this weekend with Richard later because this weekend is dedicated to FQT – family quality time. That means no laptop, business center, & only limited use of the blackberry. Besides FQT which definitely is aimed square at improving not only Richard’s attitude but the entire family – will also be taking advantage over the appetite stimulant that takes over everyone at Disney………looking for everyone to return lighter in heart but heavier in the midsection…………..highlights to follow.
10/26– Richard’s back – not only are his counts good but he bounced out of radiation wanted a steak so we rushed to the Palm. Beyond the surprize of Richard being back we had an additional surprize of someone unknown friend picking up the check. We have no idea who it was but it was such a very nice gesture on what was already a fantastic day. Looking forward to a continued march toward our goal – of course along the way there are smaller goals – right now we are working toward a family get away to Disney for the weekend. This will be the first family vacation since this chapter began. Not only will this provide for some nice family bonding but Richard’s appetite is typically on hyper drive when at Disney or sporting events.
10/25 – Richard’s got a lot of hard work to get back on track – school work, exercising, and eating…..not your usual freshman in high school to do list. Hopefully we will continue to move in the right direction.
10/24 -RICHARD TURNED THE CORNER……………………this was definitely the slowest recovery post-chemo.We still have work to do on his attitude and especially his nutrition. Yesterday was a very tough day spent mostly in the day hospital at CHOP but Richard did get home.
10/23 – The Eagles were not the only Philadelphians that had a very tough weekend – Richard and all of us had one of the toughest times yet. We are all anxiously awaiting turning the corner but this time out has been longer than usual. Perhaps today is the day.
10/22 – Unexpected weekend admission to CHOP for some GI issues – it seems that Disney is not the only place that Richard has us going from highs & lows at high speeds. Speaking of Disney we are still hopeful that we can get a family trip in next weekend but for now we are working to solve this issue so we can get back on ‘Test Track’ & ‘Tower’ to experience very different ups & downs.
10/21 – Well unfortunately we have not yet turned the corner instead the last few days have been some of the toughest since this journey started. Richard continues with his poor appetite which is feeding a difficult attitude. All of this is taking it’s toll on everyone close to Richard – we continue to fight forward toward the main goal while setting milestones & treats along the way. Thankfully we have a full supply of treats to help along the way – we just need a little break to get back on track – seems like the Mets weren’t the only ones having a very tough week.
10/20 – Richard is turning the corner slowly as he regains his appetite. Working on getting back up to speed so that we can get a full week of school in starting Monday. But before all that we have Andrew’s birthday over the weekend – Andrew is a friend Richard made at CHOP who is going through the same course as Richard – they also share their love for video games, extreme sports and the Eagles…..speaking of sports of course we have to acknowledge the hard loss of the Mets – the pain felt by Uncle David & Uncle Mark reached all the way down to south jersey – but as Philly fans we have much more experience in the heart ache department.
10/19 – Hit the trifecta yesterday with issues involving attitude, nutrition and infection. Thankfully while all three were in the house only 2 involved Richard – Nicholas is still sick with a throat infection. But dealing with all 3 issues is stressful to say the least. With Richard it appears that his ability to bounce back from chemo is delayed with the toll of a series of treatments. Hopefully today being 72 hours out will have him turning the corner and Nicky too before we have to deal with the next round of issues.
10/18 – Tough day yesterday getting back into chemo – today Richard is out of school trying to recover hopefully will be back in class on Thursday. Back to battling the elments of nutrition, attitude, and infection which is especially a difficult task given Richard’s exposure in school to all of the seasonal infections…….tough day indeed. Oct 17th – The realities of the work involved in Richard’s treatment are felt hardest when he is in-patient. While only 24 hours this time out it is certainly a draining period both physicially and emotional for all involved. Thankfully everything went well from a clinical perspective and we are quickly getting back to the routine of school and radiation which will continue until November 1st. That day should mark the end of radiation and then a rest of high school and physicial therapy only until November 6th which is the next planned course of chemo……..tough long road.
10/16 – Good weekend for Richard despite the upsetting lost of the Eagles. Today it’s a full day of school and then radiation and chemo. Treatment this time out is just about 12 hours so Richard will be back home in the morning and back off to school for another full week.
10/15 – Lazy Sunday for Richard – started with a late night with Nick K. movies then video games – now other than resting the only forced activities are some school tutoring, nutritional support and of course the 1pm Eagles game. Richard has several Eagles’ events coming up (thanks to family and friends) that combined by their winning attitutde and the fact that one is required to be a die hard Eagles fan living in South Jersey – Eagles fever has taken over. It’s certainly easier then being any other Philly sports fan although it seems like Richard has been caught by the Flyers and Phillys bug also. These are certainly the easiest bugs and fever that we thankfully have the pleasure to deal with………..although even these have been known to get way out of control!
10/14 – Richard didn’t make counts again because of his platelets so he was able to make Friday night lights with friends, then off to Friendly’s for some late night snacks. At yesterday’s weigh in – our efforts to put some weight on Richard pre-chemo have paid off – 2.2lbs in just 4 days. Today’s resting with some work thrown in so Richard can stay ahead in school since is he likely to miss a day next week for treatment which is facing an end of possible postponements. Despite the postponements radiation marches on with yesterday being a little over the half way make. It’s a slow march to the goal line but at least it’s in the right direction.
10/13 – Friday Day the 13th hit right at midnight with an attack on our youngest Christopher who threw up all evening into the morning. Thankfully Richard actually is doing better having found a renewed appeptite. Today it’s school for Richard then off to CHOP for a transfusion and possible treatment if his numbers make it. Either way we will have at least one victim of Friday the 13th to nurse back to health.
10/12 – Richard is back in a routine of a high school freshmen except of course for his bald head and daily radiation which have become all too routine.
10/11 – the mystery part of ‘tomorrow’ keeps getting Richard delivering gifts – yesterday Richard did not make PLT counts again – seems like his radiation is keeping him from getting his next round of treatment. But this unexpected surprize did allow a family dinner which is always considered a special treat. Today’s it’s back to high school, actually for the rest of the week – Richard will go back to CHOP on Friday for a blood transfusion and check of his PLT to see if he can start his next round of treatment but of course that remains a mystery as to when.
10/10 – Long day yesterday in radiation – a machine was done so since Richard’s time slot is one of the last everything backed up making Richard 2 hours late. Today we hope Richard’s PLT count is good enough (>75) so that he can finally get this next round of therapy. We have scheduled this for 2pm so that Richard can get a full day of school in since he his going to miss tomorrow any way. More to come if treatment is on or not -
10/9 – Eagles win and TO was a no show on a beautiful Sunday – today is a school day for Richard despite it being Columbus Day. This afternnoon it’s off to radiation for round #11 of #28 to his femur – Friday was the last day of treatment to his chest (a small milestone). Tomorrow it’s back to checking the PLT counts to see if we can finally get in this short course of treatment which is sure to causes changes in the ever chainging schedule.
10/8 – Sporting weekend – Yankees and Georgia loss……very bad! Mets win……very good! Eagles / TO at 4pm…..yet to be determined. Richard has been enjoying all the sporting events on tv as well as some hands on activities brought to a new level by Aunt Giina and Uncle John with the introductioh of a new black iMac laptop to work with Richard’s new camera……nice. Richard enjoys having lots of friends and family around although at times it feels like we are running a hotel or frat house – it’s like another full time job. Besides all these goings on Richard has homework today to prep for school on Monday – then a third attempt at the next round of treatment – we”ll see if the PLT count makes it this time – lots of mysterys – PLT counts, who’s at the door next, Eagles how big over TO.
Cooper River Run – For all you runners that didn’t get your fill last week in the Ho-Ho-Kus 5K we are postponing Saturday’s Cooper River run because of (1) Richard’s treatment today, (2) no one really wanted to run in the rain two weekends in a row, (3) some of us were disappointed with our times and wanted more time to train for the next event……….pick one that sounds best to you. As a result of one of these reasons we are unable to get our act together to provide the same caliber event as the HH5K – but stick those shoes too far out of reach I’m sure we’ll establish a goal worth running to soon.
10/7 – Rainy weekend which is likely to get some sunshine from the arrival of the Buffa’s this afternoon. Richard enjoyed his afternoon off from school and chemo with some movies, friends, and food. The food continues to be an issue…..it seems that while the time away at school is great for Richard’s mind & soul – his body has suffered as evident by a week of losed weight. Seems like not everyone is packing on the pounds from school cafateris.
10/6 – Today was to be an unusual course of treatment for Richard. Because of his radiation his 3 day course is now down to 1 day. This was the reschedule from Monday’s missed counts but unfortunately Richard’s platelets did not come up high enough so we are delayed until Tuesday. We did take advantage of Richard’s day off from school (teacher conference) and got x-rays done as well as an appointment with his surgeon Dr. John Dormans. Dr. Dormans could not have been happier with Richard’s progress. For now he still has total restrictions on moving his shoulder but his elbow will continue with therapy to regain his range of motion and strength. Richard took advantage of the rainy weekday off in his own way by going to the Texas Chain Saw Massage with some friends from school. Probably going to be that kind of weekend bad movies and comfort food.
10/5 – “gone fishing” which is the reason for the late entry. Richard had a typically high schoolers day as reported by him and verified by EDline – the real time high school report card – now besides Go4theGoal we have another favorite website. Radiation continues and we hope to sneak in round #8 tomorrow which is less than a one day course. Of course this is up to the mystery of tomorrow’s counts.
10/4 – Significant day today as it is the last of the radiation treatments of Richard’s chest still have 20 treatments left on his leg but as for his chest it is complete. Last night after almost a month Richard removed all of his butterfly dressing that were covering his incision on his right arm and there were a lot of them. Yesterday Richard had to leave school early because of some stomach upset which is remarkable in that it was the first time that this has occured since he started high school. Christopher our youngest has missed more school.
10/3 – Well yesterday was both a mystery and a gift. It was a mystery because Richard unexpectedly did not make counts to undergo his next round of therapy. His platelet count was too low so therapy had to be put off until Friday. The gift came from the ability to have a somewhat relaxing dinner with Richard at Chickie and Petes – despite the fact that at 4pm the restauant was already filled with pre-game Eagles fans getting their perfect seat locked down well before kick off. The delay in therapy act actually works out well with Richard’s school as he is off on Friday…….believe it or not Richard is actual happy that he doesn’t have to miss school because of therapy……not sure if that falls in the mystery or gift catagory.
10/2– We can’t thank everyone enough for their support at the 3rd Annual HH5K despite the rain – seeing Richard cross (or should I say glide) across the finish line smiling was worth a million bucks. Check out the “iSpy” page to see what it looked like. If that wasn’t enough the blue bandana wearing G4G team lead by Gina organized a great event that raised several thousand dollars. The Buffa’s have designed a full range of t-shirts black and white, short sleeve and long sleeve, car stickers, and hats. Today’s it’s a relaxing day of school / chemo / radiation. Because of Richard’s radiation his 3 day chemo therapy is only 1 day since one of the medications can’t be given so Richard will only be in at CHOP less than 24 hours so it’s back to school tomorrow……….no rest for the strong at heart.
10/1 – Race day today – the first major “Go4theGoal Foundation” fund raiser – we are all off for an early departure to get to Ho-Ho-Kus in time for the race. We will provide for you an update of exactly how many of us achieved our ‘goal’ for the day. Richard has already made tremendous advances on his goal all while proceeding with a “normal” life going through one extraordinary journey.
9/30 – Friday Night Lights has hit south jersey for Richard – for the second Friday night in a row he has spent it first at the movies and than at his high school watching with friends his school get rocked. Richard has definitely gotten the most out of his first week in high school – happily this has not been limited to the social scene but also academics. Thanks to techniology we can view in real time his grades from his teachers…..isn’t the internet wonderful. Today lazy Saturday for Richard – friends, food, and some studying…..not sure of an “f” word for studying but I’m sure if pressured enough Richard could come up with one.
9/29 – Richard quickly recovered from the mid-week celebrating and has fallen in comfortably to a routinue of high school classes and radiation. His physical therapy is a bit of a challenge in that it is difficult for a now 14th year old who looks and feels good to grasp thetremendous amount of changes to his right upper arm that will require an equally tremendous amount of rehab. Preparation is on for the first Go4theGoal Foundation event – a run set to start Sunday in Ho-Ho-Kus and hopefully end a few hours later although it may be a little longer than that for some of us.
9/28 – Richard had a birthday full of surprizes some from his crew others from friends he hasn’t even met yet. His friend that he hasn’t met yet came from an associate of dad’s who’s son works for DC. When we got back from dinner waiting for Richard was a large box with not yet released white/black/gold dial-up snow board boots…….perfect for Richard’s extreme snowboarding. One of the most special surprizes came from Matt and Brent who gave themselves – they made a surprize mid-week appearance. Of course the gathering point was no stranger to Richard and his crew – yes……Chickie & Petes. Today back to high school and radiation.
9/27 – Happy 14th Birthday Richard – the crew’s getting together for a dinner at Chickie & Pete’s but the celebrating actually started yesterday thanks to the McAuleys supplying 4th row seats for the Flyers. Thankfully although the Flyers were awful the rink does offer….yes….Chickie & Pete crabfries. Not sure if it was the crabfries or the two units of blood that supplied Richard a second wind but it was certainly nice to have a renewed Richard ready for the action of today’s celebration.
9/26 – “High School is great!” that’s how Richard responded when I picked him up at school yesterday with energy and excitement that certainly did not go along with someone with a hemoglobin of 6.7 and platelet count of 26. Today was to be a “normal” day of high school & radiation but now we need to add blood transfusion to Richard’s activities. When we look back at the month today is a capsule of what’s been going on this whole month….a lot. So far September has been nothing if not action back – starting with Richard’s crew’s Disney holiday, then right into his 7 hour surgery, followed by a brief recovery then a 5 day in-house course of treatment – yesterday first day of high school & radiation and we still have the best part – Richard’s 14th birthday on the 27th………..like I said action packed. And October’s looking to be just as fast paced starting with the Go4theGoals Foundation’s run in Ho-Ho-Kus on the 1st.
9/25 – High School today – last evening Richard had a school paper on how his illness has affected him for better & worst. On the worst side was his emotional outbreaks of being upset over his situation especially with regard his restrictions – swimming the biggie. On the better side was appreciate for “stuff” – life, family & friends. Also the foundation which has the opportunity to help other kids that may not have had the opportunity had Richard and all of us not been in this situation. I’m sure there will be many more less coming out of this year of the “wise fool” for all of us.
9/24 – Just the typical Sunday planned with football, friends, food & fun….unfortunately the day will also be occupied for Richard by some high school freshman studies that he needs to get in before entering the hallways of Camden Catholic tomorrow. I’m sure that given what he has been through since May – freshmen year will be a cakewalk.
9/23 – A “normal” life started last evening with Richard and Nick C. going to a movie then attending their high school’s football game – unfortunately they got beat. More “normal” stuff planned for the rest of the weekend as we move into a normal/extraordinary week starting with Richard’s first official day in high school on Monday which will end early for him so that he can start his radiation oncology and get some blood work – even with that it’s really nice to be settled down a little for the entire family. Today’s just some swimming (thanks to a hard working heater), planting of mums and making of Dad’s pizzas for dinner (not sure if this is in the normal or extraordinary catagory).
9/22 – Returning to a “normal” life in extraordinary times – that’s the desired plan now that Richard’s treatment has settled down. As you can imagine with so many family & friends wanting to help and be around it can at times create a hecdic environment. And while it may be especially tough on Chris and his regular runs to Toy r us for Richard it’s important that he move into as “normal” as possible a life as any high school freshmen with a serious disease can. So this weekend promises some house work, family time & school work – oh the fun of it all.
9/21 – Yesterday was one of those WOW days when everything is relatively normal or even better than that. Richard and I went to Penn for his staging of his radiation and tattooing which went well. We then went to the Oncology Clinic for blood work (good results) and dressing change. From there we both took a break and headed to Chickie & Pete’s for some fries, mussels, and wings. If this wasn’t a busy enough day for Richard – then came some tutoring followed by a trip to visit his new high school to meet some of his teachers and walk the hallways. All in all we have definitely turned the corner. Of note is the fact that we have updated Richard’s schedule for his remaining treatments – “Where’s Richard?” now reflects all of his remaining courses which are targeted to end on March 2nd.
9/20 – Richard’s off to radiation oncology today at Penn for his tattooing this will surely give something to show off and talk about at the local chained restaurants. Richard has become a regular at Cheese Cake Factory, Outback, and PJ Wellahan’s – all in an attempt to supersize him before his next round of treatment.
9/19 — Thankfully the most time consuming problem that Richard is dealing with is his freshman Algebra – nice change from dealing with difficult medical issues. Nutritional status is slowly improving but never fast enough when we are in the middle of it. Tomorrow we are off to radiation oncology which will include tattooing……….we always knew we would be dealing with tattoos with Richard but never in this context……….tomorrow is truly always a mystery. Sept 18th – “Quiet slow recovery” are the words of the next few days. This course started yesterday although the Eagles didn’t help this process but they did make the north Jersey Stefanacci crowd happy campers. “Quiet slow recovery” although with this course will be some high school studies as we try to keep Richard on track with his freshman year. “Quiet slow recovery” is certainly a change from the goings on in August when we had a constant flow of family and friends but this is a wlecome change for now. I’m sure that “quiet slow recovery” will be followed this weekend from family, friends, food & fun.
9/17 – We always have said that the march toward Richard’s goal required the conquering of nutrition, attitude, and infections. Yesterday was a battle of attitude which needed some tough love – reminding Richard that this disease does not eliminate the need to be responsible & respective……tough dealing with both the issues of cancer and being a teenager. Today we tackle the nutrition issue……hopefully with the help of the Eagles & some friends.
9/16 – The boredom of spending the majority of September in the hospital for major surgery and a five day course of chemo hit the fan at least today we are planning for our usual nascar style exit.
9/15 – The boredom of the long 5 day hospitalization for Richard was broken up by some present surprizes such as some very nice and unexpected “get well” gifts and not as pleasant such as work from his tutor – it is high school after all. The weather is not the only indication that summer is over…..
9/14 – Restful time at the hospital for Richard despite some interruptions by therapy getting Richard to try drills that he has already mastered. This admission has the added fun of the requirement of protective clothing because of VRE outbreak on the floor – not to worry not a major medical problem – more of an inconvienece. Grandma Ann & Grandpa Dave are once again at bedside helping Richard and the rest of the family with all the crazy & sudden needs that arise. Grandpa Dave looks especially good in his yellow protective outerwear. As with all his admission appetite continues to be an issue although currently no problems with any nausea which is a plus. Richard has some high school school work to get time, hopefully he will be up for that although even on his best day that was something that would be difficult. We continue the slow match toward Saturday’s discharge.
9/13 – Richard amazed his entire team by how well just 7 days from his major operation he is doing. This is a testimony to extreme sports – it certainly builds up the body so that it can recover from any extreme activity…..like crashing off a hugh half pipe or 7 hours of surgery. You certainly don’t get that kind of response from golf. The most difficult part has been Richard’s recovery from his unexpected leg biopsy which has caused him limited mobility on top of the limitations from his shoulder reconstruction. Also now that summer is over Richard needs to keep a focus on his high school studies even thou his chemo therapy may zap his strength – the real world keeps rolling on despite one’s treatments.
9/12 – Today Richard is headed to CHOP for round 6 as he continues to recover just one week out from some very major surgery. This is a five day course so Richard will be at CHOP until Saturday. During this admission Richard will continue with therapy on his arm and leg as well as preparation for radiation oncology services which will start in a week or so. Despite his restriction Richard wanted to head out last evening for dinner – tough to keep him down.
9/11 – Turned the corner yesterday with regard Richard’s pain in his Right Shoulder as well as his appetite. Considering he had not really eaten since his operation last Tuesday this was a welcome event. Grandma Candy driven by Aunt Heather came done for a visit as well as Brett (although I think Brett was disappointed that we weren’t heading out for another road trip like last weekend’s trip to Disney World. Today starts the first full week of school – Richard’s starting high school although it may be a few weeks before he steps into the hallways of Camden Catholic, Nicholas 7th grade at St. Peter’s where Christopher is starting first grade. Morgan is being homeschooled for her 6th grade before possibily going to Morrestown Friends (this week Morgan is on a class trip to Lisbon).
9/10 – As one can imagine this course has been one of the most difficult & emotional yet. While the chemo courses did leave Richard weak and bald that did nothing to his ability to participate with extreme sports or other major activities of Richard’s daily living. Having a totally reconstructed shoulder is much different – first there is the pain that comes from the realignment of all of the shoulders muscles, tendons, and nerves made particularly difficult from a biopsy to his left leg that has made that a non-weight bearing extremity – not easy. In addition there is of course coming to grip with what this all means for a 13th year old extreme sport athlete not used to using a bedside commode. What of course can not be lost during these difficult times is the fact that at this point all Richard’s test results are negative for active disease so the march toward Richard’s goal continues with 8 radiation treatments to his chest and 28 to his left leg and the completion of his remaining 9 rounds of chemo. “God didn’t promise days without pain, laughter without sorrow, sun without rain. He did promise strength for the day, comfort for the tears and light for the way.” this quote definitely sums up where what we are going through now with all the pain, strength of family and friends and light toward where we are going.
9/9 – The pit crew of Uncle Tom, Aunt Gina & Kim helped make a rapid escape from CHOP to home yeserday afternoon. As you can imagine Richard is still in a lot of pain from his 6 hours of shoulder surgery but we are all happy to be home. Looking forward to a quiet weekend at home watching some football, hanging with friends and trying to regain his lost appetite before his planned return to CHOP on Tuesday for round #6 of his treatment.
9/8 – WOW….is the best word to describe yesterday’s news. Richard’s continues to make his oncology team very very very happy. Yesterday the reports on his bone marrow which were positive in May for bone cancer are now negative. A questionable spot on his left femur which was biopsyed showed dead tumor and with the removal of his primary lesion (his right humerus) he continues to strongly match toward his goal. Richard continues to slowly recover from 6 hours of surgery just a few days ago which involved removing 85% of his humerus – this means a new shoulder that will need time to heal and scar over to form this new joint. Progress continues in all areas and depending on his pain control and ablity to move around with a new shoulder and eat post-surgery will dictate when he goes home. Given that his next round of chemo is set to start on Tuesday there is a possibility that he may be at CHOP until then but as we continue to say yesterday is a mystery – today is for celebrating Richard’s continued success and helping him continue to move in a positive direction.
9/7 – Richard’s recovery from 6 hours of surgery just two days ago is being helpedby a lot of family support – all the Grandparents, many of the Uncles & Aunts – even Aunt Kim coming in from Seattle. Today more PT/OT to help get Richard up and moving around also Richard’s entire team is getting together to discuss all of Richard’s test results and the best plan going forward. For now it’s getting up, eating, and removing some of those tubes to get home before returning back to CHOP next Tuesday for a five day course of chemo.
9/6 – First post-op day – Richard’s usually quiet post-op – not doing much instead acting like a teenager on a rainy summer Saturday but we will need to motivate him to get up & move around & start to eat & drink so he can get moving to get home. Yesterday was a long day……at the hospital by 5:45am – prep and in the OR around 8am – 6 hours of surgery which went “great” or as the surgeon said “I’m very happy”. . Richard had a rather comfortable evening thanks to his medications which were needed to fight the distractions of hourly vital checks, several catheters in uncomfortable places, and the general discomfort of being in a hospital. All in all a very good night……….now it’s the recovery from his surgery and on to phase three radiation/chemo and then a final phase of more chemo rounds. It’s a slow match toward Richard’s goal but it continues to be in the forward direction. Sept 5th – Richard is off for an early morning departure to CHOP for surgery of his right humerus. He certainly is ready for surgery with regard his nutrition and attitude. He has gained almost three pounds from his Disney weekend and that continued last evening with a family dinner at the Capital Grill with Aunt Colleen and Uncle Andrew as well as Grandma & Grandpa Glew & Stefanacci. This helped not only with Richard’s nutrition and especially his attitude. Lots of positive energy going into this important day as Richard enters the next phase of his treatments. Sept 4th – First off I should let you know that we have gone back and filled in the details (the ones fit to print) on Richard’s crew’s Disney trip over the weekend. This was again the perfect medicine to get Richard ready for surgery tomorrow. Nothing is as effective as getting a kid (and their family & friends) fattened up as a Disney trip – there are calories behind every corner. Besides the improvement in nutritional status Disney also provides the perfect attitude adjustor – throwing one together in vehicles speeding or dropping at great speeds really provides nice bonding opportunities. Well as for today, Labor Day promises to bring in some of the grandparents and other family members in to be around for support during Richard’s surgery tomorrow – today will be more food and attitude preparation similar to Disney but without the high speed chases. Sept 3th – Returned from Disney safe and sound. Before we vacated our rooms at the Yacht Club we of course got some more time in the game room to test our newly acquired skills. After landing safely in Philly thinking we were safe from fried foods Richard put in a special request for Outback Steak House so the Stefanaccis and Kellehers (those left in town anyway) reluctantly agreed. Sept 2rd – Packed Repetition was the call for the day. Richard’s crew was permitted the luxury of a later departure today. We set sail around 10am for MGM where most of the crew did Tower of Terror and Rock & Roll Roller Coaster nine times each. A late lunch was had at the famous Sci-Fi Diner which operates like a drive-in movie complete with eat-in cars and large movie screen. 2/3s of the crew went on from there to Magic Kingdom for a ride on the three mountains – Space, Thunder, and Splash before heading back to home base. We headed out quickly to the boardwalk for some carnival games – despite Richard taking the early lead in the water gun game he forged victory for the opportunity to soak his friends. Uncle Chris donated the basketball game with 3 out of 4 baskets. Diner was a late night affair – we had planned on all of the crew eating at a Sushi bar but unfortunately on Saturday night the establishment is taken over by Karaoke singers (and bad ones at that) – so we divided into two groups of five and half went for sushi (2 Richards and 3 Nicks) and the rest of the crew went on to Palios for pizza. This day was secretly kind of special for me – before leaving for our trip I was seacrching our Disney stuff for any left over park passes and run across this note date 9/2/00 that I had written to Richard: “ Richard – Thank you for spending some very special time with me yesterday – I look forward to doing a lot more of this – with the whole family at Disney & Rollerblading – Love Dad.” You never really know how special each and every moment is…..
9/1 – Today we got all 4 theme parks in in one day. Starting with Animal Kingdom we hit all the major rides and than headed to Magic Kingdom for some competition in Buzz Lightyear, followed by Haunted Mansion and Pirates while also getting in the three mountain rides. Then it was back to home base for Richard’s crew for some dinner or desert at Beaches & Cream before making our way to MGM for some high speed terror on Rock n Roll and Tower. After closing MGM the crew headed to EPCOT for some imagination and Test Track x 3 thanks to Eamon finding the trick to skipping the pre-show. Richard’s crew closed EPCOT at midnight before returning to the Yacht Club.
8/31 – Today Richard’s crew is heading to Disney and we do mean crew. Included in the band of 10 – yes we are now up to 10 – Richard, Richard Sr., Nicholas S., Nick K., Nick C, Eamon K, Tim H., Brent S., Matt S., and Uncle Chris. We arrive at the Yacht Club and quickly hit the ground running – first to ESPN for a bit to eat than to EPCOT for Test Track before going to MGM for Tower & Rock n Roll. From MGM we went to EPCOT for a late dinner in Japan – Richard can never pass up Japanese table cooking although the Disney version is without fire or knives. Those weren’t missed as Richard’s crew was able to provide more than enough verbal action.
8/30 – Just to fill everyone in on the reason for the missing day we had a major computer crash – losing everything on my hard drive and rendering my computer useless. Repairs are underway but I will most likely be without a system for the next few days so information from Richard’s crew at Disney may be spotty. Just know that it’s for that reason and not because everything that happens in Disney stays in Disney. Today Richard’s crew is getting ready for an early morning departure – specialty preparation was needed for Richard’s heparin flushes because of the heightened level of airport security…things that you never think about all of a sudden enter the picture.
8/29 – “It’s all good.” as Richard says. Uncle Mark made it in for a quiet dinner and some discussion regarding adapting to an arm injury. Nick and Nick have become regulars at the house they will be sorely missed when the summer ends and school starts but of course before that happens there is this weekends Disney fling.
8/28 – Today we are heading to CHOP for a meeting with Richard’s team to lay out the plan of treatment going forward…..more to come. In addition to tracking these developments we are also tracking the developments of Ernesto as it bears down on Orlando just in time for Richard’s crew on Thursday. It’s looking like Richard’s crew won’t be the only major force hitting the area this weekend. On another social development a quick mention to friend Jack Dillenberg (dean of the ATSU Dental School in Mesa) regarding how much Richard enjoys the DC backpack he got from Jack’s son got Jack moving on bigger things – Jack immediately contected the founder of DC shoes for some special time with Richard at their headquarters in San Diego…….positive energy is definitely the best medicine. Aug 27th – Late entry secondary to a late night drive back from Woodward which required a stop at the Red Rabbit (local drive-in). Richard enjoyed some extra crispy fries, pork pull samdwich washed down with a thick black & white shake. Today everyone is chilling – the Maiorinos and Uncle Dave, Aunt Rebecca and Echo are all in the house for some food and fun…..and Sunday laziness.
8/26 – Richard’s having a great time at Camp Woodward as always he is taking full advantage – last evening he stayed up with his pro-skating friends until midnight. It seems despite Richard’s treatments this summer he was able to get a full course of Woodward in – including a fair amount of skating. Stu got us put in the Woodward Lodge which will make it very difficult going back to the cabins with 20 campers and 1 bathroom. It’s going to be difficult going back to the cabins for both of us! Aug 25th – Got a response from Dr. Nance (general surgery), and his response (about the lung nodules) was “The nodules are tiny to the point of not identifiable! I would have a hard time finding them open or with a scope…”. GREAT news. To celebrate we are on our way back to Camp Woodward for an overnight – not to worry about the sleeping conditions – Stu has set us up in the Lodge (the Ritz-Carlton of Woodward).
8/24 – “Light” was the name of the game for yesterday and today – just hanging out with friends, getting in a very light movie (Accepted), and no new clinical developments. Last night Richard spent the night over at Nick C’s for a little change of pace. “Light” is soon to be replaced by action packed both on the clinical side with Richard’s bone marrow biopsy in between all of that is some heavy social activities including 48 hours at Camp Woodward and a 3 night stay for Richard and 6 friends to Disney World. Helping to control this crew will be Uncle Chris and me (Big Rich) – hopefully my training as a Woodward camp counselor and Uncle Chris’ training in law enforcement should be enough.
8/23 – These updates came from Tim Hack which I thought gave an interesting insight into what Richard has been up to lately: “Monday evening – yup just got done on the board walk … we had pizza soda and funnel cake … goin to play some video games and cards / Tuesday morning – hey just an update, Richard had cereal and a red bull drink for breakfast, then we rode bikes on the boardwalk… now we are about to go to the beach for a little skim boarding … and I am sure we will eat lunch soon too! … I will keep you updated. “ Last evening was a rather long one with us up late – Richard had an MRI of his left leg which went until 9:30pm – he left CHOP in a great mood as we headed with Nick K. to Capital Grill for a late night dinner with Jerome. Today we hope to get closer to some open questions.
8/22 – Well the “great” news got confusing today as we investigate the surgical options for September 5th. Richard is definitely set for resection of his primary lesion of his right arm – questions remain regarding possible resections of the two lesions in Richard’s lung as well as the lesion in his left leg. To make the determination as to the exact plan some more tests are planned – MRI of Richard’s left leg, biopsy of these lesions, and bone marrow test. With all this information in hand Richard’s team will gather with us to determine what;s the best plan of action. Aug 21st – The “Great” news from Richard’s test results last week transended to others – we all had a great weekend of having the entire Stefanacci family together – all 5 children plus spouses and 11 grandchildren. Last night the crew went in mass to a Benihana type restauant for some truely communical dining. But even more significant and definitely in the “great” catagory of things – Uncle John Buffa shot an 83 at our local course (his new favorite) – first time under 90! Well ever a great weekend for everyone we go into today with a major discussion with Richard’s surgeon to discuss the plan for September 5th.
8/20 – Richard’s day yesterday was filled with family, friends, food, and fun which was made especially easy by the week’s great test results! Today promises more of the same as the entire Stefanacci family remains intact. Although there were some victims from the weekend’s gathering – Uncle David and Aunt Rebecca and their Echo couldn’t handle the heat generated by 11 Stefanacci grandchildren and a new little doggie Sam. Despite Chris’ pleading the Glew threesome made a late night escape back to the city to return someday soon so Echo can restake his claim on the pool. Tomorrow calls for Richard’s meeting with his surgeon to discuss the plan of action scheduled for September 5th.
8/19 – Great news – Richard’s total bone scan & CT of his chest showed the same pattern of regression of his disease as the MRI of his primary lesion did earlier in the week. That means that his treatments are working in reducing his disease with the goal of elimination in sight. This will require surgery of his primary lesion in his right shoulder area followed by radiation and an additional 9 courses of chemo. Just in time to celebrate this great news is a full Stefanacci reunion with the arrival of Uncle Paul and Aunt Hedi and Richard’s two long lost cousins from the west coast.
8/18 – Yesterday’s total bone scan was indeed a family event when the Glass family joined Richard for his test…..results still pending as well as those from his CT Chest. Between studies Richard made it to one of his regular eateries – Chickie & Pete’s for one of his favorites….crabs….despite Richard’s regular eating out he has not taken advantage of this time prior to surgery to gain weight. Today brings the beginning of a Stefanacci family of sorts with Uncle Paul and family coming in on the red eye from the west coast. This should be more welcome medicine for Richard.
8/17 – Yesterday Richard made it to Woodward with a friend from camp – not even being a week out from his last therapy Richard was very tired so he didn’t skate but used his video camera to capture some of the action. Today Richard has his CT of his chest and full body bone scan to access the distant lesions that were noted before he started therapy. All this information will be important when we sit down with his surgeon on Monday to discuss the planned surgical procedure and remaining course of treatment. While this course is moving forward – Richard’s schooling is also – yesterday he was officially enrolled into high school and will be attending classes and receiving tutoring when he’s at CHOP or at home unable to attend classes. This should make for a busy fall………
8/16 – Today we are off to Camp Woodward for some video tapping of Richard’s skating friends and perhaps a little skating……………need to mention to the northern New Jersey crowd that is drawn to the Mets that once again the Phillies have killed them………..wow the Great news just keeps rolling in. Aug 15th – Yesterday the word – “Great” re-entered our vocabulary. Richard’s MRI of his shoulder where his primary lesion is showed a complete reduction of his soft tissue lesion which had appeared to be the size of an orange and a 20% shrinking of his primary lesion in the bone. “Great “ news indeed – immediate after the test we went to Chickie & Pete’s where Richard demonstrated that he has regained his appetite -it was right after dinner that we got the “Great “ news about his test results which really made it a “Great” evening – than we heading to the Philly Met game where the home team killed the visitors. In fact we saw more homeruns and runs scored than we have seen in all our games combined. All these events include Nick C. in tow – who was gracious enough to sit patiently in a CHOP waiting room for over an hour while Richard got his MRI completed, Richard now has scheduled for Thursday a bone scan and CT of his chest where his distant lesions were located before treatment, Today is shaping up to be a return of the frat house as the Nick K. and Nick C, are back in town along with the return of Richard’s health.
8/14 – The car was not a friend yesterday – twice Richard made attempts to get out of the house and go for a ride first to D&Q Sportings Goods to check out the snowboards and than to his favorite steak restauant – both times we made it about half way there before nausea set in sending us back to go. This is probably a combination of slowed recovery from his last round of treatment as well as some anxiety over the coming tests – today he is set for an MRI of his right shoulder which is his primary site, than Thursday for a full body bone scan and CT of chest to evaluate the places that he had activity of disease before his treatment. Monday the 21st is our sit down with the surgeon to discuss the planned course for the surgery scheduled for September 5th. And the final test for this round is a bone marrow aspiration set for August 28th to see if there is still bone marrow involvement…………………..so you can see why nerves may be a little higher at this time.
8/13 – Slow but sure progress forward continues as Richard moves further out from his last round of treatment. One way to tell that Richard is recovering is the number of trips made to fill his food cravings…..Aunt Annie’s Pretzels, Burger King Chicken Fries, Buffalo Wings from KFC, PJ Wheelan’s or Hooters depending on whatever. Besides the food, yesterday involved visits from family – Mimi & Papa, Uncle Chris and Cousin Ryan. Today more of the same heading toward a busy week of testing and sporting – MRI, CT, bone scan on the testing side / Phillies v. Mets, Camp Woodward and of course the new sport of poker (not sure when ESPN declared this a sport). Aug 12th – Today Richard continues his slow recovery back from his fifth treatment course. We are all settling into the routine of a tough first 24 hours followed by a slow recovery. Plans are in the works for a friends weekend at Disney prior to Richard’s surgery. Dad will be chaperoning 7 teenage boys (thank goodness for the Camp Woodward training) as we eat and ride our way through Disney……much more to come. This afternoon we will get a start on the eating part with the arrival of more family & friends…….this will probably include a late night poker game if Richard is up to it.
8/12 – Today Richard continues his slow recovery back from his fifth treatment course. We are all settling into the routine of a tough first 24 hours followed by a slow recovery. Plans are in the works for a friends weekend at Disney prior to Richard’s surgery. Dad will be chaperoning 7 teenage boys (thank goodness for the Camp Woodward training) as we eat and ride our way through Disney……much more to come. This afternoon we will get a start on the eating part with the arrival of more family & friends…….this will probably include a late night poker game if Richard is up to it.
8/11 – He’s home at last…it took some coaxing to actually get him home! Hard to believe but it’s true! He was given his nausea meds a bit before it was time for him to leave and he fell into a deep sleep and didn’t want to get up! Before he came home he got a visit from a good college friend of Rich’s, Brian Brennan. Brian played football for the Cleveland Browns and brought along another player…quarterback Bernie Kosar. They were in for the preseason game between the Browns and the Eagles. It was an uplifting visit for Richard…it has been a rough, emotionally, 24 hours. It was nice to see him smile and interact with these football legends!
8/10 – Yesterday saw several long hours of a thirteen year old dealing with the “C” word – there were the questions of “why me”, “what’s next”, and of course “am I going to die” – Richard most of the time makes us forget that he is 13th and not Lance Armstrong – of course they are very different. …and we are blessed for that. Today Richard finishes round five and will soon begin retesting to determine how his “C” responded to treatment. …which I am sure in part lead to last night’s questioning. Providing Richard a supportive and positive loving environment is the best that we can offer at this time and of course lottery tickets (won over $70 on the ones Pete provided) – what ever it takes for this 13th year old to get through this.
8/9 – Last evening was boy’s night at the hospital – Richard’s good friend Tim stayed over and the experienced the late night treats of CHOP……..the car that stops by late nights at the hospital front door (except for the nights that Dad stays over) to sell some of the best water ices around to the staff and some special guests from the hospital. Richard’s video camera even made it to his side so that he can continue to develop his video skills. Today will be a lazy day of laying in bed receiving treatments and trying to eat when he feels up to it. One of the big activities comes thanks to Uncle Chris’ good friend Pete who sent 30 instant lottery tickets – this comes as Richard was to begin his “no lottery” ticket phase – part of the motivation to getting his video camera! Now Richard has most of his favorite things at his bedside – family, friends, video camera, and lottery tickets………………….more to come on how many winners are in Pete’s pack of 30 but for Richard just getting them is a winner. (On a correction note – I miss printed Gina Buffa’s email address – Gina is the contact person for the Go4theGoal HHK 5K being held on October 1st – looking forward to seeing everyone than.)
8/8 – After a great day at camp doing a little filming and skating Richard is heading to CHOP this morning for round five – this is his last round of treatment before moving to phase two. Phase two is Richard’s surgery to remove his primary lesion in his right arm but before that Richard will undergo testing to determine how well his lesions responded to therapy. While all this is going on the Go4theGoal Foundation is moving full speed forward with some fantastic fund raising events that we hope that everyone will be able to participate. These upcoming events are listed on the last page of our web site (Upcoming Fund Raisers).
8/7 – Left early this morning for Camp Woodward where Richard is looking forward to using his new video camera. Also of significant note is the Go4theGoal Foundations’ first event – the Ho-Ho-Kus 5K – so get your running shoes ready. The race or walk is set for October 1st and part of the entire fees will go to our foundation which will help children affected by cancer achieve their goals. So we are looking forward to a big turn out – for more information on our first event check out http://www.hhk5k.com/beneficiaries.htm.
8/6 – Good Sunday to all! Yesterday couldn’t have been any nicer…the heat finally broke and not a cloud in the sky. Lots of visitors yesterday…Buffas, David,Rebecca, Ecco, and for dinner the Muhlbergs joined us. Richard rallied the guys for an after dinner poker game. We discussed some ideas for future fund raising events that we are excited to get organized. A lot going on over the next few months…look for updates and information to follow!
8/5 – Richard continues to do well through his home course of IV antibiotics as he gets ready for round five on Tuesday but not before a weekend filled with family and friends. Yesterday Richard got a professional camcorder to shoot his friends rollerblading since his rollerblading has been hammered for now. This is the same one Uncle David uses in work so Uncle David’s in for some tutoring when he comes to visit today. So we warn you that besides ending up on the pages of Daily Bread in print when you are around Richard you are also likely to wind up caught on tape. We also got a visit from some old friends from South Carolina, the Sanitos. Although their visit was short; they have promised to return for a longer stay at Thanksgiving. Looking forward to then…Nick, you had better come too!
8/4 – With the near 100 degree heat Richard was still able to keep cool with a great Kelleher boat ride and than some skin boarding (the closest thing to surfing without getting wet). Today begins the weekend arrive of family and friends to hang out – eat and most importantly spend some quality time with Richard – I’m sure that gambling in the form of poker or lottery tickets will be involved.
8/3 – Today Richard is off to visit the Kellehers at Stone Harbor – this despite Richard’s three times per day IV antibiotics and it being 100 degrees out – we’re definitely taking full advantage of these days when Richard feels like good. Just received the updated schedule from the team at CHOP (which we will post soon) – Richard’s surgery is scheduled for the very beginning of September with his evaluation of the effectiveness of this first series of treatment scheduled to take place the end of this month.
8/2 – Richard made it home by late in the afternoon. His sensitivities still have not come back on his cultures. As of now he is still on some pretty potent antibiotics; hopefully the results will be back some time today. When the sensitivities come back and he can take a more appropriate antibiotic, his doctors will switch him. Today he will spend catching up with friends and staying as cool as possible!
8/1 – Hello, news is good regarding his cultures…everything is still negative and his numbers are going up (blood). And no fever for over 24 hours! The past few nights he has stayed up until 3 or 4 in the morning watching t.v. His new favorite show is The Fresh Prince of Belair. Luckily, Nickelodeon runs a 4 hour marathon every evening! It looks like he will be getting out today, when we are not quite sure. Technically he should not be discharged until the results of the last 24 hour culture comes back. This will not be until after 10pm but, hopefully things will look really good and he will be discharged sooner! Treatment 5 has been officially moved to next Tuesday…it’s the three day course so he should be home by Thursday! Be well and stay cool!
7/31 -Richard continues to improve clinically with regards his numbers although not enough to start his fifth course of treatment today. In fact it looks like round five will be delayed until next Tuesday because of Richard’s counts and a burning desire for a field trip on Monday. He is settling into the lifestyle of a teenage boy again – late nights, late mornings (really early afternoon’s) and lots of snacks. We remain hopeful that we can move these activities to home by late on Tuesday after three negative blood cultures.
7/30 – We said it early and often that the three main concerns for Richard are attitude, weight, and infection – well it seems like we are now facing the latter. His blood cultures revealed an infection in one of his lumens after 23hours of negative growth from his cultures – this will require a course of antibiotics to save his line. Clinically Richard acts (except for feeling a little more tired) as though nothing is wrong except for having to be in the hospital on some great summer days. More treatment today and following the numbers…….yesterday’s numbers revealed everything to be low……..hemoglobin, platelets (13,000), and white count of 0.3.
7/29 – Last evening Richard had to be admitted to CHOP for a fever (tmax 102) and low white count. In addition to all of that his other major numbers were also extremely low – platelets 23,000 and hemoglobin despite his recent transfusion was back down to 7.4 – this last round of therapy really knocked the heck out of his bone marrow! Hopefully this course in the hospital will be like the last fever admission – 3 days feeling ok but bored silly & somewhat frustrated by an unexpected admission. July 28th – Good day, Richard seemed to be tired throughout the day yesterday. His appetite is still good, always looking for ice cream or some sort of fried chicken product! (Aunt Barbara, we are all out of Pralines and Cream!) As the evening approached he rallied for the drive out to Borderline skate park. He skated a bit and hung out with friends and some of the pros. Matt and Brent are back for a weekend visit. Hopefully they do not plan on doing much skating given his counts and the heat!
7/27 – Blood yesterday…….regaining strength today for all of us as we get ready to head into the weekend. Round five of treatment for Richard is still very much in the air because of his counts – we won’t know exactly if treatment is a go until Richard has his labs rechecked on Monday morning. Tonight Richard is hoping to get to a skate session to meet some friends and bring Matt and Brent back to hang for the weekend. His recovery from round four continues – we just are not sure whether it will be fast enough for treatment on Monday. July 26th – Yesterday his headaches seem to get more regular (this is a sign that he needs blood). But they didn’t keep Richard from planning out his week and going to dinner and a movie! When he got home, after 11pm, he threw himself down on the bed and proclaimed, “I really need blood!” Today we will go to the hospital for a transfusion. Hopefully, he will not be that depleted and will get the kick he needs from the blood! Good day to all!
7/25 – Well, it seems as if this is all becoming very predictable (thank God). Richard woke up yesterday with no energy and looking very anemic! After the results of his blood work came back we understood why. Just like after his last five day course, his hemoglobin was an 8.6! So, tomorrow he will go in for some blood. The rest of his numbers were good but, bottoming out of his platelets and white cells doesn’t usually occur until a few more days. Otherwise, everything else was normal for him. Including dinner out at The Cheesecake Factory and a late night run to Blockbuster. July 24th – Hi, yesterday was another success! It was so nice to see Richard and Nick Kelleher get inspired! Inspiration can come from many sources; people, an experience, or in this instance a movie. It seems as if the teen lounge has lost their interests so the boys have gotten creative/inspired. And the movie that has become so influential to them is…..Jackass! Yes, they were doing stupid human tricks that ended up sending Nick Kelleher to the hospital! Richard was using a sword to knock bottles off Nick’s head. They called in an audience, none of whom were adults, and said watch this. Richard proceeded to swing, with a toy sword, at Nick’s head! Yes, he swung a bit too low and Nick ended up in the hospital. Richard felt absolutely horrible; Pat and Jerome were kind enough to chalk it up to teen stupidity! They have a few more years of experience in that department than we do. Luckily, Aunt Tara was on and was able to staple, not stitch, Nick’s head! Like any true friend, Nick was back over shortly after his trip to the ER! Things seem to be back to normal for us!? July 23rd – Hello, I think the scratch offs are becoming an addiction! Thank you Uncle Chris and Pete! I guess we are lucky to live just a few blocks from a 7-11 (Or as Richard would say sev-elev.)!?!…Last night after we all settled into bed Richard got his appetite back. It is all very routine…it starts with, “Sorry guys but I could really go for some…Ben and Jerry’s.” Luckily we had it. Then it was the Taco Bell craving…he was nice enough to pass on this craving given the fact that it was 11 o’clock at night! Although, he did have me make him eggs. And this was quite the challenge for me; I ate too much birthday cake and was really nauseous! He is already up and has planned out his menu for the day! He told me that he will be lunching with Tim and Mary Kate at PJ Whelihans! I don’t think they are aware of this yet…expect a phone call guys! And dinner he wants to be at the Cheese Cake Factory! Bon Appetit!!!
7/22 – Morning, it’s been a rough week of chemo…the nausea has been more of an issue than in the past. Richard sleeps through most of his treatment and doesn’t eat or drink a thing the whole stay! He is hooked up to fluids 24/7 so, drinking is never an issue. For him pushing past the bad taste in his mouth because of the medicine is a challenge. He also has been struggling with the reality of the whole thing more than ever. I think with his retesting and surgery (4 weeks away) just on the horizon there is more fear about things. Almost every night in the hospital he would cry about “why is it me mom…I don’t want to die…I just want to be normal!” Heartbreaking for a parent to hear! I would tell him, “Richard, you were never normal before…is that what you want to be normal?…Or do you want to be Richard?!” And to the question why me?…I would tell him, “Nobody knows why you were chosen to be a messenger but, everyday someone that knows you is learning, growing , and changing because you have touched them. Heavy s@$# for a thirteen year old! On a lighter note, I think he has turned the corner. Rich went out to get him a slurpee and some lottery tickets. He won on his first card and that really seemed to change his mood. He is resting comfortably and watching poker! Our Go 4 The Goal bands are in. For those of you who I promised them to…I’ll be sending them out this week. The other 5,000 bands we are going to sell and raise money for the foundation. We would like to sell the bands for $5.00 each and want to raise $25,000 by Richard’s birthday September 27. So, for those of you who know anyone who has a store, or can ask to put them in a store you frequent, or if you want to buy them yourself and give them away please contact us. Any way you can peddle these would be great and will help someone touched by cancer! We will cover the cost of the bands so every dollar raised will go to the foundation to help kids affected by cancer reach their goal. Also, we would like pictures (digital are best) of people or places that Richard is some how involved with. For example, Camp Woodward could send a picture of campers in front of a camp sign; be a bit more creative than that! We want our readers to be able to have a clearer picture of Richard’s life! Happy belated birthday to my beautiful sister Colleen (July 20th…40!). And Happy Birthday today to me and Paul…!
7/21 – computer crash!!!
7/20 – computer crash!!
7/19 – computer crash!
7/18 – Yesterday the frat party moved to CHOP as well as Richard’s positive attitude. Richard shocked everyone by his extremely positive and upbeat attitude. Most of the CHOP staff in the oncology unit expects to have to raise the kids’ spirits that they work with – they don’t often get a kid coming through that helps raise their spirits as Richard has been doing. Also of a lesser note is the fact that Richard and Nick were beaten badly in foosball by Grandpa David and Dad Richard. Today the boring routine of chemo and fighting the boredom of hospital life plus the side effects of the treatment set in for the week long stay.
7/17 – Hi, yesterday was all about staying cool…Uncle Chris, Renee, and Uncle Chris’ friend Pete Gundy, came for a visit. It was nice to have some “new blood” to play Call of Duty 2! We actually forgot they were here…they were caught up playing for several hours!?! Aunt Rebecca, Uncle David and Ecco were also here. Thank you David for doing the grilling! And we got a surprise visit from Uncle Joel, Aunt Stacey, and Sari…you were missed Jake! Richard and his skate friends were able to rally and skate for a bit after lunch! And after we returned from dinner Richard put back on his skates to show us some more tricks…sorry Dr. Leslie (Richard’s oncologist)…just don’t tell Dr. Dormans (Richard’s orthopedist…top surgeon for Ewings Sarcoma…who told Richard he can do whatever he wanted as long as he had one foot on the ground at all times! )! Thanks for coming to visit Brent and Matt…Richard looks forward to your next visit! And thank you to all of our visitors yesterday…you are all such good medicine! Today we are heading to CHOP for treatment #4.
7/16 – Well, for those of you who have logged on several times it’s finally here. No, nothing that is new and exciting just the Daily Bread delivered way past its deadline. So, I can officially say good evening! Brent and Matt Scherer are here for another weekend of skating with Richard. Yes, he is still doing things that he shouldn’t but, it’s hard for us to tell him no. Skating is such an important part of his life and at times it can be better medicine than chemotherapy! Rich picked the boys up several miles from our home…not even Brent or Matt could make it back in the heat and humidity yesterday! Friends and family have become such an important part, to all of us, of surviving this!
7/15 – Today’s daily bread is not going to be about Richard and his exceptionally normal life that he seems to be leading through all this; instead it is going about a family that we know whose mother just had surgery for breast cancer. I will leave them unnamed for the moment and details very vague until I get permission from them to “let loose” on the website. They have four children, like us, and cancer hit their family in May, like us. Morgan and I went to pay a visit to their home today. I broke down crying, when we left, because we found out that their insurance will not pay for a lot of what she needs. And their children (ages 8-12) need something more to do than sit around and see their mother sick and in pain. As soon as I find out about their needs and what we can do to make their lives as normal as possible; I will let you know. We have the resources, we have the man power, we have the courage, and we have the strength of prayer. Good-day to all!
7/14 – Salutations…I stand corrected…it wasn’t until 2 am that they went to bed…I guess it was just wishful thinking on my part! He did appear more tired than usual and encouraging him to go to bed early doesn’t seem to register. He knows that treatment 4 is just on the horizon so, maybe that is why he is squeezing all he can out of every day! The days are turning out to be very routine; which is comforting to us all! Enjoy your day and try to stay cool! (We know, Seattle is the only place in the country without heat and humidity right now!)
7/13 – Hi…it’s been so nice seeing and catching up with friends that we have lost touch with over the years. It just takes a few minutes, a good bottle of wine, and it seems like old times! This proved true yesterday with Richard and his old friend, John Basker. John and his mom Randy are friends of ours from Boston whom we haven’t seen in several years. It took no time at all for John to fit right in to Richard’s posse. I think the rock star lifestyle might be wearing a bit thin on the boys. Last night was an early one for them…they were asleep around midnight!
7/12 – Hello to all…Richard and his gang never made it to the market with me yesterday morning! When I went to get them (about fifteen minutes after they said they wanted to come with me)…I found the three of them passed out in the living room! Nothing like falling asleep after a long evening of Dave Chapelle, Call of Duty, and a quick shower in the irrigation system! How nice it is to be 13!..For most of us staying up all night and then catching a few hours of sleep on a living room chair would really affect our day. But for Richard and the Nicks it didn’t stop them. They went out for the afternoon, Nick Kelleher had a soccer match, Uncle Mark came down for his weekly dinner with Richard (they switched venues…Outback instead of Hooters), then the Hak brothers came over for a poker game! The game broke up early…Richard and Nick Casetti left to go hang at Nick’s house. Richard has never had a problem with playing hard: it’s the work hard part of the equation that we’ve had trouble getting him to understand However, under these circumstances it’s soooo nice to see that he hasn’t lost the desire or energy to live like Richard has always done.
7/11 – Greetings…Yesterday turned out to be no surprise to me…I had a feeling that his numbers were going to be too low! Richard took the news like we expected he would…He kissed his grandmother on the cheek and proclaimed, “I do not have to go in todayJ”. He then said, “I’ll see you later mom” and hopped on his bike! The rest of his day was no different from the past. Oh, actually thanks to the Casetti’s: they have broadened his restaurant choices! They dined at the new Cheesecake Factory; and were not home until well after 10pm. It was actually good that they ate so late because it gave him and the Nicks enough energy to stay up all night! Yes, they never went to bed! At 6:30 I woke up to find them playing in the sprinklers out on the lawn! Now, they want to escort me to Wegmans and help me food shop!
7/10 – Good morning, good day, good evening,…Why all the greetings you may wonder?…Rich pointed out that I shouldn’t assume that everyone that is reading this is doing so in the morning!….And he is right I know at least one person ( Laura from CHHRC) that has told me she reads the Daily Bread in the evening!…So, hello to all…whenever you may read this!…Sunday turned out to be more of Richard’s normal routine. The “party boys” woke up leisurely, late in the morning and called Eamon to come over and take them for lunch at PJ Whelihans. Thank goodness Eamon got his license this year! And thank goodness for Whelihans! They raced back home to watch the World Cup game. It was touching to see Richard locked arm and arm with the Kellleher boys as they cheered on France while watching the nail biting shoot out. Poor Nick C. was the odd man out wanting Italy to win…but didn’t everyone want Italy to win!?!…All of our family and friends were horrified to hear Richard was rooting for France! Aunt Gina even commented about the blood that runs through his veins. Rich was quick to point out that it could be French blood…after all he has received 4 pints of blood…Viva La FranceJ…Today he goes in for treatment…that is if he makes his numbers.
7/9 – Good morning…you have a new author today!…My husband is taking this a bit personally but, I thought it would be nice if we changed things up a bit on the Daily Bread! Richard’s visitors are still arriving with smiles and gifts…Grandma Candy is visiting from Ohio…and our “weekend usuals” are here…Buffas and the Nicks…Thanks to Pat Haks’ 50th the boys had activities for the evening at her Jimmy Buffet themed party…I am not quite sure if they were invited or if they invited themselves!?!…And as usual with Richard and the Nicks…the three of them were up till 5 this morning chatting like a bunch of girls!!! Or did they sneak out and come back in at 5 this morning!?!?!
7/8 – “Intense Roller Coaster” is definitely words that describe this course. Besides the ups and downs there are also the periods of the flat runs. The recent days have been more like the slow climb up to the top as Richard gets ready for round four on Monday. Yesterdays for example was a day of hanging out with a friend, going to the movies (Pirates of the Caribbean) and late night snack at Wendy’s (bland spicy chicken sandwich – another staple). Today should be more of the same slow and steady up time with family and friends but there is always the unexpected….. for both better or worst.
7/7 – We seem to be moving as a team – appreciating not only the clinical benefit but the entertainment benefit of staying close to home. As a result while the clinical numbers may have limited Richard’s ability to overnight at Woodward they certainly did not limit his activities close to home. He made several trips out and about with friends and enjoyed dinner out at Outback. The next few days promise more of the same as we prepare for round four which starts for five days on Monday.
7/6 – Despite the fact that France won their World Club Game yesterday – leaving Richard’s two favorite teams in the final for Sunday (Italy – France) we have two other themes dominate our conversation – #1 that the clinical situation dictates everything. By this we mean that when the numbers are down (which was the case with yesterday’s lab work – low white count) certain activities are out – such as a sleep over at Camp Woodward because of the high risk of infection and distance from CHOP. Another theme is the “work hard / play hard” philosophy – as every 13th year old boy – Richard has mastered the later and with the help of family and friends working to keep Richard’s attitude up this has taken on a completely different level. What is needed now is to get Richard to focus on working hard part of the equation – taking ownership – so he can work with all of us to achieve the goal. We identified the three major issues early on as infection, attitude, and nutrition and for this week, any way we are dealing head on with two of the three.
7/5 – Richard’s excited about today’s big France World Cup Game, yesterday Italy beat Germany 2-0 in the final minutes of overtime. More blood work today which will set the stage for activities over the next couple of days – Camp Woodward, the start of round four, even going to the movie theater – it’s all up to the numbers since it’s become impossible to stage where Richard stands by his actions. We plan on down shifting a little over the next few days – all the food, family, friends, fireworks, and fun have left us all exhausted. So now we are shifting from the F’s to the R’s with rest & relaxation as we all get ready for round four which is a five day course.
7/4 – Yesterday we all were surprised by Richard’s blood work (again) – despite his energy level appearing as though there was no problem his blood count showed him to be anemic (low hemoglobin) requiring him to be transfused two units of blood. Richard has a difficult time treating the numbers; instead as any 13th year old would think he believes that if he feels good there can’t be anything wrong. Hopefully we will find some middle ground where he can combine this attitude with one aimed at working with his team. Last night his attitude was quickly revived by his friends and the stuff that makes any 13th year boy’s heart race – lots of loud, bright, and illegal fireworks – we’ve moved well beyond sparklers to the kind of fireworks they use at Disney’s EPCOT show (not kidding). The secret in holding such a public display in a heavily populated area is to move the party to the home of friend’s with connections (Richard’s friend Timmy has a special relationship with the local police which has been forged during his years as a volunteer firemen). Well today promises more of the same – only without the need for more blood – just more fireworks and time with friends. July 3rd -More fun hanging with the shore friends & family as the 4th of July festivities rolled on. On the way back from the shore we went through one of the worst storms we’ve ever been through. For those of us (Richard included) who knew it would end soon and everything would be fine it was actually a fun event – lightning that was better than any fireworks display followed by the heaviest down pour which included hail – it’s interesting to note that when you know that things will end well – going through a storm can be a lot less scary. Today more friends, family, food, and fun for the fourth celebrations. July 2nd – A full house didn’t just describe the winning hand in last night’s poker game but that expression could be extended to our own home – last night’s count was an additional 6 adults and 1 large furry friend. Yesterday found Richard enjoying 2 great soccer games with family as well as our own World Cup of arcade games. Both of Richard’s teams won yesterday (sorry Uncle Tom & Randy). Today we are planning to head to the Jersey shore for the annual Finelli 4th of July bash and more of the four F’s of the fourth – family, friend, food, and fun.
7/1 – Yesterday Richard made an early morning (5am) break for it to Camp Woodward (3.5hr drive). He had been scheduled to spend this week and next week there this summer so his friends were expecting him and far be it for Richard to let his friends down. The day started with it being a matter of the mind being willing but the body not being able to keep up but by taking some breaks and pacing himself Richard’s body soon caught up and the afternoon had him hanging out as the center of attention which has become typical since he started going to camp for some 6 year. This was really fantastic medicine – seeing old friends, hanging with Stew, Chuck hooked him up with a free run of the store – Casey hooked us up immediately when we arrived at camp with a golf cart. Golf carts are big deals just VIPs although Richie (as he’s better known at camp) – Richie always made his way each summer on to the golf carts. On the way back from camp we stopped at the famous Red Rabbit Drive-In and Richard had his favorite, extra crispy French Fries and his new favorite Hank’s Root Beer. All in all a good day all the way around. Included in this good news day was the successful surgery of Grandpa Dave. Grandpa Dave had knee surgery which came as a result of a sports related injury (not a surprise) – which was said to be a fantastic shot (again not a surprise). We are all wishing him a speedy recovery and only hope that he listens to his doctors and takes the time needed to recover before going after more fantastic shots. Today we are just planning some down time around the house to recover from the big day yesterday and some more big days ahead with the Finelli 4th of July blast and a few more days at Woodward next week before starting round four of his treatment.
6/30 – Our first post hospital day found Richard doing well clinically but we did ride a little bit of an emotional roller coaster. Working hard to stay in the moment and far away from the “why me” – “what’s next” thinking. Despite all this Richard has planned a 4th of July road trip (probably not the best timing) to Camp Woodward. This was the week that Richard was scheduled to spend at Woodward so as you can imagine he is anxious to get to spend time with his friends. Looks like we are opening those Christmas presents early but timing is now based on how Richard feels rather than any Hallmark date on the calendar
6/29 – Yesterday Richard’s exit from CHOP occurred with the precision and speed of an Indy Pit Crew. Before he left the unit Richard had a surprise visit from Eagle football kicker David Ackers. David still has a grudge against Uncle Tom with regards last year’s injury which occurred after a Maiorino neighborhood party – and you thought riding a motorcycle without a helmet was dangerous for an NFL player. David could not have been nicer & the response from the kids on the unit showed the effect of this fantastic medicine. It’s truly amazing to see the generosity of people especially those not directly touch by childhood diseases although I guess everyone is touched in a way. It’s equally amazing seeing the effects of this generosity on the kids – on that note the Go4theGoal Foundation is up and running. It’s only appropriate that we announce our foundations start this week although it seems like the Gates – Buffet foundation is getting all the attention for now. The details of the Go4theGoal Foundation can be found on the ‘Helping Achieve Our Goal’ webpage. Today’s Christopher’s real birthday and hopefully the side effects from this round of treatment won’t prevent us from celebrating Chris’ number 7 and Richard’s number three.
6/28 – Yesterday was a tough day for everyone – negative synergy of combining of a 13th year old attitude with powerful medications. This thankfully resolved in the evening turning to a thoughtful discussion which pressed to stay in the moment rather than turning to worrying about the future. Today historically has been one of dealing with the difficulty of managing Richard’s expectations of an early discharge – this is like telling your children on Christmas morning they have to wait a few more days before going down stairs……not easy but fortunately there are usual lots of great presents to open in the end.
6/27 – Maybe it was the week off (gaining 5lbs), maybe it’s just getting familiar with the friendly staff in the Day Hospital, maybe it’s knowing what to expect next but Richard’s spirit are especially high as he starts round three. As a result Day One of treatment went extremely well – a long day in the Day Hospital (10am – 6pm) was also helped to feel short secondary to two exciting World Cup games. This was especially painless for Richard given Italy’s penalty kick win with no time left. It’s really a plus having the World Cup to help fill the time during treatment – can’t imagine filling one’s day with daytime network TV – that would truly be painful. Today there is more boring treatments hopefully again made easier by two more exciting World Cup games. Italy’s next challenge is Friday at 3:00pm EDT which should find Richard well positioned at home after he completes his own challenge.
6/26 – In at CHOP today for round #3 – this is planned to be a 3 day course which should get Richard back on the every two week schedule. The extra week off moved the schedule around that Richard should not be in CHOP for Fourth of July. Richard is feeling good, really enjoyed the extra time off between treatments but now like any good vacation it’s time to get back to work.
6/25 – Lots of gifts yesterday and today – the team of Jessica & Mary Ellen helped arrange a very adventurous survivor themed birthday party for Christopher where thankfully everyone was a survivor although we did have some questions regarding the kiddie pool filled with ice. Richard got to participate on his level which is exactly what one would expect from a 13th year old boy who was not limited by any other of factor except his desire to play slightly more mature games with his own friends – although the challenges thought up for this 7 year old party were certainly beyond some of the adults. Later that evening the immediate family went out to celebrate Mimi’s 70th which was very special. It’s funny, we were raised to always appreciate gifts but perhaps not always as good at recognizing them……we are all getting expert in that now. Appreciating staying up late watching a favorite movie of Richard or waking up to a home full with an additional eight nephews, nieces, uncles, and an aunt……gifts come wrapped up in all types of different packages arriving not just on special birthdays but everyday….their just waiting to be recognized and lovingly opened.
6/24 -Busy house today with Christopher’s 7th Birthday and Mimi’s 70th – Richard seems quite up to the challenge given his week off from therapy despite it not being an entirely restful week. Richard with the help of his friends has quickly moved from simply having a teen lounge to entire fraternity house with the typical display of dozens of bags of snack foods, half drunken soda cans, and overnight guys thrown amongst all the corners of our home – while staying within a PG-13 rating. The theme for Christopher’s birthday that he has chosen is “Survivor” based on his love of the television show of the same name rather than the obvious reference of what we are all going through and by that of course I mean surviving a home with a teenage son.
6/23 – This unexpected extended recovery time between treatments has really allowed Richard to gain strength. Last evening he enjoyed wings at Hooters with an unnamed Uncle. When asked how he liked the restaurant Richard described it as “a very pleasant place”. The teen activities continued late into the evening with poker and video games. Of more significant personal growth – because I was traveling for most of the day Richard undertook his own flushing of his catheters….growth is occurring in all areas. For today the growth will come from the addition of Nicholas, Morgan, and Christopher back to our home after some rest and relaxation at the Buffa’s in Montauk.
6/22 – Thanks to Dr. Andrew Mulberg (our personal pediatric gastronologist), Richard consumed popcorn, pretzel, cotton candy, chickie & pete crab fries, and 2 large sodas not because of some magic formula but rather all as a result of attending the Philly’s game. In addition to providing food for Richard’s body the evening provided food for the soul. There’s definitely something special about a summer night sitting with your son enjoying a gastronomic feast while the Yankees beat the Phillies. Of note was the fact that there were actually more Yankee fans than Philly fans. Today’s more building back up of Richard in preparation of a big weekend and Monday’s round three.
6/21 – Teen activities yesterday – lunch in town with friends followed by a late night poker game. Richard’s unexpected week off from treatment has provided an opportunity to build back up and be a teenager. Tonight’s an opportunity for a father son evening watching the Phillies play the Yankees – 1-1 in the series – tough loss by Philly last evening 7-9 hopefully tonight will be equally entertaining although just being out and about will be more than enough of a gift. Also this evening PBS has a two night series (9-11pm EDT) titled “A Lion in the House” – this is a documentary on five children & their families fighting cancer – it’s described to be a very powerful and moving story. I mention this because some may find it informative (especially if one gets bored with the Phillies beating the Yankees). We have not seen it and have made a decision not to – instead we want to maintain our focus on the gift that is today and work as hard as possible on a positive outcome for tomorrow. [FYI - updated information provided on “Where’s Richard” regarding his treatment plan.]
6/20 – In case you missed the late entry yesterday Richard didn’t get admitted to CHOP for round three because of a low platelet count (controls bleeding) – his platelets will continue to build back up but they were too low to start treatment so we are home until next Monday. This has changed the entry schedule (which is always up to changes) back one week. It’s expected that Richard will continue to gain – strength, weight (picked up a pound since last Thursday), and points in video games.
6/19 – Today’s the start of round three – Nicholas, Morgan & Christopher are at the Buffa’s in Montauk so that we can focus on Richard. Juggling so many balls is difficult if not impossible without a strong supporting cast of family and friends which we certainly are blessed to have in abundance. Grandma Ann & Grandpa Dave are back in town to help out. We all got an opportunity to have dinner together and watch Richard devour a filet while engaging us all in some interesting conversation on gamesmanship. So we move from this very high point to the beginning of therapy which with each additional course is hoped to not to delivery the same blow…..there’s that mystery for tomorrow. LATE ENTRY…Actually the mystery was today when we found out that Richard’s platelets were too low for him to begin this course of treatment. Rather than leaving this week open for further mysteries Richard’s team decided to give him a week off to recover fully so it won’t have to start round three until next Monday. Other good news was that he gained a full pound over the weekend.
6/18 – Looks like the blood transfusions kicked in raising Richard’s energy level and spirits – there is no doubt a visit from the Buffa’s, Mimi and PopPop as well as Uncle Chris – plus the US tie to Italy probably helped (despite the fact that Italy really scored the American goal). Today is of course Father’s Day on the calendar at least – Hallmark events give way now to real events which are now based on Richard’s movement toward his goal. June 17th – Uneventful is the best word to describe yesterday. We didn’t get the bounce that we expected from Richard’s first transfusion probable because a low grade fever kept him down. Hopefully today as we get one more day away from his last treatment (and one more day closer to Monday’s start of round three) he will begin to feel stronger. The balancing act for Richard’s supporting cast knows when to push him and when to ease back – not an easy point to determine with a teenager but hopefully (probably our favorite word) we will be quick students.
6/16 – Today’s just a hanging out kind of day after many surprises yesterday included Richard fooling all of us – skating & playing with friends all the time with a hemoglobin of 6.9 (normal 13-16) – surprise! But before his transfusion Richard had to get pizza and another visit to Neglected Truth in with his friends from Woodward Matt & Brent. It’s tough being a 13th year old, feeling good mentally and being told you need to be in the hospital….well at least for now it’s home time.
6/15 – While yesterday day is history it made for some good history – Richard made it to Neglected Truth for lunch with friends, hanging out and a new pair of skates which of course had to be tried out. Blood work today in preparation for round three starting on Monday at CHOP – this next course is three rather than five days. Cousin Patti provided an uplifting article from the Asbury Park Press (http://www.app.com/apps/pbcs.dll/article?AID=2006606140412) about a teenage girl graduating who had achieved her goal and over come Ewing Sarcoma. Uncle John also sent a link to another young girl doing equally well whose family went through the same course we are with a website and non-profit foundation (www.taylors-homepage.com) (www.taybandz.org). Beth commented last evening that it’s amazing that for such a rare disease it seems that we are running into everyone touched by this. It’s probably just the fact that now we are seeing the world with different eyes – eyes that are looking for hope strength and possibilities…….the possibilities that are the mystery of tomorrow! Right now we are all looking forward, this morning (as we now do every morning) for the gift of today!
6/14 – Yesterday things began to turn for the better which is the usual treatment course – bottoming out of blood counts which zap Richard of energy followed by a rapid building back up followed by another round of treatment (scheduled to start next Monday). In an effort to speed recovery diet has been a focus resulting in a complete Stefanacci household shift – now we hope foods have lots of calories and fat – fast food is now a good food! Today skate friends due to meet at Neglected Truth (http://www.neglectedtruth.com) – skate shop in Philly – lots of fun & friends & hopefully food.
6/13 – Yesterday was tough – didn’t make it to the concert sound check because of weakness and dizziness with nausea. Richard recovered after a bit of time at home especially when Nicholas, Morgan & Christopher got home from their time away with Aunt Colleen and Uncle Andrew. Richard’s appetite has been like that of a pregnant lady – suddenly wants chocolate chip cookie ice cream sandwiches so out to the store for that – Dr. Pepper run – hot wings run (this one is becoming a staple) – appetite like everything else is very variable………need to make the most of every single moment and not lose any opportunities to advance to our goal. Today hopefully will continue his recovery post-treatment especially with the help of having his brothers and sister around and a little bit of extra sunshine.
6/12 – Today’s a big day – Uncle Randy, Hayley and Jackson have arrived from Vegas – Nicholas, Morgan, and Christopher are due in from Aunt Colleen and Uncle Andrew’s – and we are planning a trip down to Baltimore to see Uncle Randy’s band the Artic Monkey (http://www.arcticmonkeys.com). Still very much a roller coaster of emotions and clinical high and lows but we are always looking to fit some special moments in when we are able….today hopefully will be one of those…..and each day there after.
6/11 – The first few days after treatment are tough ones but the course typically is that each day gets better which is what we are praying for today. Yesterday was a roller coaster of clinical and emotional issues in the morning – followed by a good afternoon of some fun and games including a dinner of wings (a major staple in the diet now) and half of a mini golf game. It’s amazing how quickly Richard’s condition can change (especially immediately post treatment). Last evening on the way to the video store with Austin and Nick K. Richard pushed for mini-golf but half way into it he wanted to get back to his home base. It probably did not help that his father got a hole in one on the first hole throwing Richard’s usual performance off base. Again praying that as we getting further and further out from our CHOP days that the hills and valleys we are traveling over will become as flat of the Arizona desert.
6/10 – Departing CHOP is always difficult – between being anxious to get home and wiped out by the medication it makes for an interesting get away. Cousin Austin helped make the transition home a little bit easier. Each day after the medication peaks we will see Richard getting stronger. A lot going on this weekend around us including the annual town fair which this year is featuring an Alex’s Lemonade Stand (http://www.alexslemonade.org/index.php) dedicated to Richard’s goal.
6/9 – Richard is excited today about the potential of going home this evening although it may be delayed not for medical reasons but because Nick and Eamon K. reassigned all of the children toys from the lounge to Richard’s room and despite the fact this happened on Wednesday it has taken this long to get everything back in order. Hopefully this funny business will stay remain at CHOP and not come home – although we are always up for a little bit of fun and games. Speaking of games – the home teen lounge is coming together with the addition today of the pool table and poker table……..sure to have several late night games……for the Stefanacci’s this could mean past 10pm.
6/8 – Continuing the progression through round two – Grandma Ann & Dave have been here through this entire course as well as a cavalcade of well wishes which yesterday included Aunt Gina. Being constantly hooked up to medications has not gotten to Richard although it hasn’t done anything positive for an already picky eater. A quote sent to us from Mary Ellen illustrating the future we all are trying to create one that has Richard achieving this goal. “The future is not the result of choices among alternative paths offered by the present, but a place that is created-created first in the mind and will, created next in activity. The future is not some place we are going to, but one we are creating. The paths are not to be found, but made, and the activity of making them changes both the maker and the destination.” j.schaar
6/7 – Exhausted after a very busy first day of treatment – tolerating this round of medication well except for the usual feelings of being tried and not very hungry despite the wide variety of college fair eateries nearby plus a 24hr Mickey D’s in house. Today lots of the same – lots of meds, lots of fluids, lots of trips to the………well you know. The room here looks great – very homey thanks to everyone’s cards and letters – plus a big banner from HFS. The ecards really help brighten the room and Richard’s spirits knowing everyone is praying for him. Especially liked the note from Geralyn G. although even Richard found the use of the letters in “Richard” to tell a story very funny – I guess it was an attempt to follow Gina’s lead in describing Richard’s character that will get him to accomplish yet another extreme goal.
6/6 – Yesterday, the beginning of round two was without a doubt the proudest day in my life for having a son display such unimaginable strengthen and kindness. Grandma Ann captured the day with this note – I was thinking and wanted to write you a quick note…today was actually a blessing…who would have believed two weeks ago that Richard would come back to the hospital for his second medication treatment…with such a happy face…such a positive attitude…such a kind and caring young man…I ask…………….could you??????????????? could I..?????????????????????????..Not with the class and confidence that Richard approached his therapy to cure himself. My respect and love for your son grows every second and my love for you and Beth and the way you are dealing with such an unimaginable crisis literally leaves me speechless. Dad and I are here for Richard and you for every step of this journey.
6/5 – Back to CHOP this morning for round two of medication. Weekend ended on a high note after a series of visitors and well wishes – lots of trips out and about and than last evening Richard went out to dinner with Nick C. and family. Today we go first to the clinic where treatment is started before getting moved to a room – I’m sure the tough part this go around is going to be fighting the boredom of being a 13th year old boy in a hospital for a week. June 4th – Richard decided to go for the short short hair cut so Uncle David & Uncle Jeff did the fashioning on the deck yesterday. Lots of friends over to hang out with Richard including all of the Warshuser’s and Mary Ellen, Paul, Jessica and her adorable children. Key point to take home is making sure that everyone remains focused on the ultimate goal and not get distracted with side shows. As you can imagine with all the goings on it’s easy to forgot for a moment what this is all about – while distracts are sometimes needed to remain whole – at the end of the day it’s important to remember once again that we have one goal and one goal only and that is a healthy Richard.
6/3 – Yet another good night after a very good day – lunch in town with his class and shopping for a pool table. No great surprise that his regular blood work results were back to normal. Beth and Richard were even able to get into town for a very quick dinner and drink. Later that evening Richard went to the school for a dance then had Nick K. stay over for a late night of video games. Today has on the schedule a full complement of visitors which always are a great help in raising everyone’s spirits……….positive energy.
6/2 – Well last evening Richard road his bike into town for water ice than went to the firehouse with friends to hear a band – amazing when the ordinary becomes somewhat extraordinary. Oh also of note is the visit of Uncle Mark who delivered hot wings from Hooters. Today Richard has an invite for lunch in town with some of his classmates which hopefully if he is feeling as well as yesterday will not be a problem attending.
6/1 -Another uneventful evening – the pattern seems to be that immediately after hospitalization for Richard’s treatments that he has tough days as the medication works to kill the actively growing cells – as time goes on his body recovers to his norm – which is where we are now with trips possible to his school and the tennis club over the next few days. Along this course to our goal there will be many smaller milestones that we will shot for – one that we are working on now thanks to Grandma Ann (also known as Grandma City) is maintaining Richard’s hair through his treatments using a special shampoo – this while maintaining our focus on our primary goal. We sincerely appreciate everything that is being done – knowing full well that this goal requires a team approach and as we have said earlier we have the very best team both professionally and family/friends possible. As noted this site is a work in process and we continue to work on the “Linked” page (Uncle Dave’s department) and have recently added a quote that we feel captures what this journey is all about – that’s on the “Positive Energy” page. Thanks again to our team – more to come.
5/31 – Uneventful evening – trying to stay cool as the heat builds. While “healthy” visitors always welcome (especially peers) its helps to call ahead to see how Richard’s doing….this is tough to predict. Today is an out day – Verizon store & lunch at the local burger joint. We are still on course at this point to return to CHOP for round two of the medications.
5/30 – HOME TODAY – counts up / feeling well – anxious to get home ………..Nicholas, Morgan, & Chris have returned to school this morning. Back on schedule if there really is such a thing….Positive Energy working++++++
5/29 – Boredom is the big issue now. Richard feels and looks ok so is upset about having to be in the hospital. Should have the culture back this morning as well as repeat of the blood work to see if the white count is increasing. Last evening he still had a fever with no sign of infection or complaints. Best case is that there is are two separate things going on: fever from the Ewing’s disease as the medication does its work and low blood count from the medication also. Fever does not always equal infection but with a low white count you can’t guess wrong so the result may be a few boring days at CHOP. Tonight Richard is still in the Hospital. He still has a fever but, it is only a little one. A bunch of Richard’s friends visited. We usually have some next to him always. We are all still busy working on the bracelets. We only have a couple of bags left. Everyone is helping out. Richard even got some letters from people at school. Richard will hopefully be out of the hospital by tomorrow. Tomorrow everyone is returning to school (except Richard). Richard will be returning when he is felling up to it. He is looking a lot better than before but, he is still upset that he is in the hospital.
5/28 – The streak of uneventful nights ending last evening with a fever of 101.5 which resulted in a readmission to CHOP because of the fever and low white count (the part of the blood responsible to fight infection). This points out the importance of hand washing and following the house rules including staying away if you aren’t feeling well. Well for now we are back at CHOP but will return home after Richard’s white blood count has risen to a safe level.
5/27 – Another good night – out for dinner again – yesterday Richard’s class came to visit – he really enjoys the visits especially from his peers. Today hanging out at home in the developing teen lounge. The wrist bands and cards are now in (thanks to Grandma Ann and Grandpa Dave as well as Aunt Kim and Gina and Uncle John plus our design team of Nicholas, Morgan, Chris….I’m sure I forgot someone but you get the idea that it was a team effort) so expect your’s soon. This afternoon friends from karate came – the Mulhberg’s. After a little while Richard got really tired. So, he lay on the couch and watched TV (but he is wiped out from a lot of people visiting). Everyone is helping to make the “Go 4 the Goal” bracelets. We have 3 thousand of them so, everyone will get one. By 4:00pm things settled down and Nick and Chris went out with their friends. Then it was quiet. Later on everyone was back in the house resting. By then Richard was in bed resting (he was not feeling good). Hopefully he will feel better tomorrow because we are having more company. Morgan
5/26 – The trend continues – another good night and morning – getting into the new “normal” routine – the entire family is back together with Morgan flying solo back from Vegas with the confidences of a thirty year old (thanks Auntie Kim). Will continue to make the most out of every moment.
5/25 - Another good night that was preceded by dinner out so Richard’s appetite is improving – today’s big adventure is the arrival back of Nicholas, Morgan, and Christopher. No such things as weekend plans instead open for what ever adventure comes our way.
5/24 – Great Night (slept all the way through without interruption) – today’s shaping up to be an out day when Richard is up to getting out of the house – Beth continues the transformation of our traditional living room to a teen lounge well equipped with pool table, poker table, flat screen and video games for those days when the action needs to come to Richard – thankfully today does not appear to be one of those days.
5/23 – Good morning – visiting nurse from CHOP to help out – planning some afternoon local trips – focus on attitude / nutrition / infection prevention…………….stuff that helps in these areas appreciated.
5/22 – Good night – some walking – video games in the lounge and now Home today…………….
5/21– Today is Richard’s last day of meds for this series – he continues to do well – looking forward to getting home and getting back to his routine. Even playing a little bit of basketball in the room complements of Uncle Mark.
5/20 – Like the 1-2 favorite in today’s big race – Barbaro’s life was changed in a second and now a bone problem will require a lengthy recovery – Richard’s treatment started last evening on his challenged road back to good health.
5/19 – first round of treatment starts.
5/18 – evaluation of overall health so that ideal treatment plan can be delivered plus discussion and decision on treatment plan worked on.
5/17 – evaluation of extent of problem with a bone scan and further evaluation of biopsy and bone marrow tests.
5/16 – to the OR today for biopsy – frozen section reveals the problem.
5/15 – the end of Medicare Part D enrollment was not the big event this day what was to be a routine peds visit for evaluation of shoulder and joint pain and review of a plain x-ray done last week turned into much more – less than an hour later at CHOP with the head of ortho getting ready for a biopsy and investigative studies like MRI, bone scan.
5/14 – Mother’s Day – “normal” day of tennis and basketball without complaints except for a few of dad’s shoots.
God didn’t promise days without pain, laughter without sorrow, sun without rain. He did promise strength for the day, comfort for the tears and light for the way.
“To get what you want you must accept whatever happens & continue on your way.”