prayer for Nicholas.

New York, USA

Birthday 15th September 2000
htx 12th March 2003

send a message of support to Nicholas.
His mum is called Michelle.

send an e-card to Michelle and Drew.
the address is Mallett4@frontiernet.net

October 28

Nicholas spent a lot of time in the hospital this past month. First with a bout of the chicken poxs which only localized itself to his right arm, which is where he got the vaccine when his was 15 months old. It has been clearing up with the help of antibiotics which he is off of now. Being that it could be very dangerous for an immuned suppressed person he spent a fews days in the hospital. About a week after that he was back in for the weekend due to fevers which was most likely due to the fluid in that sack.
Another 3 days after that he was back in for surgery, which went extremely well. The sack of fluid was removed and a liver biopsy was done. And what wonderful news we received on october 24th. NICHOLAS IS IN REMISSION!! Our baby has beat the worst, oops cannot call him a baby he yells at me, our LITTLE MAN!! He will be on a year maintenance, chemo medications in pill form taken at home and once in awhile an IV push in clinic. Once he does not have to get the pushes anymore they will remove the broviac line. He is slowly coming off of some medications, the prednizone is gone finally so we are now trying to get him PT/OT to help with his strength building.

Thank you all for the prayers, they truly work!!!

Michelle

September 29

Daivd,

How are you doing? Nicholas is doing ok, clinical wonderful, but having some really bad joint pains for the last three days most likely due to long term use of prednizone. He seems better today and hopefully we do not hear him scream anymore as it is just horrible to hear your 6 year old son scream in pain and you cannot do anything but console him.

He finished his 5th cycle on the 21st and also that was our farewell to Mount Sinai, he is now up at Albany Medical Center for his Hemmoc care and we will see the Cardiology team on Oct 6. We also just learned that the cardiologist at Albany learned from Dr Gelb, who is Nicholas current cardiologist, and was also an Echo specialist at Mount Sinai years ago and he now heads up the Albany transplant cardiology team. So depending on how the first visit goes we might eventually move his care for cardiology up there as well. We will miss Dr Bhojwani (his Hemmoc doctor) as we love her and if we leave Dr Gelb we will miss him as well but the hospital itself is not what it used to be and we feel Nicholas is best up at a cancer care hospital/transplant hospital we trust.

October 12 we will meet with the surgeon as the fluid in Nicholas gall bladder area needs to be removed surgurical and should of been done awhile ago, draining did not do much. So he will most likely be going in for surgery the week of the 16th and they will also do a liver biopsy as well, they are all thinking the way his labs and scans look he might already be in remission. If this is so he will be put on a maintenance schedule and slowly be taken off the prednizone. He will not go another cycle until after surgery, if surgery does not happen for awhile he might be put on some maintenance oral medicines until his surgery.

It has been quite hectic with doctor appointments and everything else. He goes to the doctor anywhere from 2 to 3 days a week for blood draws and we have a nurse come to the house 2 days a week to change his dressing on his broviac line. He is now getting tutoring from his school, so the teacher comes right now 3 days a week. It is crazy but he is holding up well.

Please continue to pray all goes well with his surgery and his biopsy, it would be wonderful to hear the words 'REMISSION' just like it was wonderful to hear we have a 'HEART' for your son.

Your friend,
Michelle

 

September 17th

David,

Sorry it has been awhile, it has been crazy. Also, my computer is just about ready for the garbage. I think it is going to be time for a new one as I cannot do anything on this one anymore.

Nicholas was suppose to start chemo on the 7th but one of his liver function levels was a little elevated (back to normal now), so they did not start him. On the 7th they took blood and on the 8th they did what you call an 'Indian scan', but his blood back in him with some sort of nuclear medicine and did his scan. This scan showed some fluid, which he has had there for awhile, which looked like it was infected. They admitted him to the hospital on the 10th and on the 11th they drained this fluid and put a new broviac in as his old one was failing. Everything went great with the procedure but 72 hours after they drained the fluid something started to grow, but it seems they got it before it became a major infection, so he is on antibiotics until Wednesday. He did start his 5th cycle on the 13th while in the hospital and was discharged on the 14th, he will go again this week for more chemo then rest.

We had a party for him on the 9th, he had a blast with his friends and cousins. It was small but fun. His benefit was on the 16th and it was just incredible, the whole community is very caring and generous. There were so many people who donated there time and gifts to help our son out, we will truly never forget this day. Rhinebeck Ford even gave him a REAL QUAD and it is blue, he rode it all around the lot and he took a small spill at the end of the benefit as he was going too fast but thankfully he only scratched up his finger. He was quite scared and said he would never go on it again, but as soon as it showed up to my house he came outside with his helmet on and started riding but this time much slower.

We also might be switching his care to Albany after this cycle, we are in discussion about this might being in Nicholas' best interest. We have already spoke with Dr Pearce in Albany and she is more than happy to have Nicholas; in fact her associates always say she talks about him often. We will talk with his doctor at Mount Sinai on Thursday, we love her but the rest of her associates and the hospital itself is not to pleasing to us anymore- too many mishaps.

Hope all is well with you and your family.

Your friends,
Michelle, Drew, Nicholas and Skylar.

September 4, 2006

It has been awhile and it has been quiet, thank heavens! Nicholas did very well during his 4th cycle. Did not get admitted at all, all chemo was given in clinic and he got to go home afterward. We start the 5th cycle this coming Thursday and if everything goes as planned at the end of the 6th cycle he will go in for a biopsy.

We have planned a small birthday party this Saturday, doctor said go ahead and do it as he deserves it. Will be at our house and in the backyard so no germs floating around in the house. He decided to share his birthday with Skylar being she missed a 1st birthday party in June. So we will have a Disney Cars theme but also have a cake for Skylar with Tinkerbell on it and a Cars cake for Nicholas.

Take care,
Michelle

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