2hearts - archive - Nicholas NY

August 5
Nicholas' cycle of Chemo is over. Tuesday went well and he was home Wednesday evening. We visited Albany Medical Center on Friday and he will go back Monday for a blood transfusion as his count was a little low and cardiology does not like him to be below 9 and he is at 8.8. So levels will be run again on Monday and if they are still low he will be transfused. It is a nice hospital and the doctor was very nice and great. He will use this as a back up in an emergency and for transfusions, eventually if we like it better we will switch his care there, we found out that day they did handle a PTLD T-cell patient but it was a kidney transplant so they are familiar with this rare cancer.

We go back to clinic at Mount Sinai on August 10th and on August 16th he will start his next cycle. He will be admitted this day also for a scan and 2 days of treatment. He is doing well and is looking better each day.

Your friend,
Michelle

July 29

We are finally home!!!

Nicholas was officially discharged on July 14th but wind up back in on July 16th due to fevers, he was back out on the 20th and we officially came home as a family on July 26th after his 2 day stay for chemo. He will continue to go to clinic and have some hospital stays for chemo for the next few months, we need to watch for any fevers as if anything above 100.4 twice in a half hour he is to be brought to the ER. He actually goes back in for the night this coming Tuesday. He will have a biopsy sometime in November of his liver to see if the tumor is gone, his liver is almost back to normal size and they did not see any abnormalities in is blood work so this is all a good sign but we are still not out of the woods yet. He is very frail, getting back his strength and trying to walk straight is tough but he is truly amazing! He is on a lot of medication, which usually he is good with meds and he is being a sport, but he hates taking so many, but he knows he has to until he is better. We are also montioring his blood pressure at home, he is on 2 meds for this ever since his seizure and being on prednizone we need to make sure it does not elevate again. He wanted to know when he goes back to school so we had to explain he will have a tutor coming to the house for the first few months, if I can I am making it for the whole school year so I make sure he doesn't get any type of school sicknesses.

When he came home he went straight for his swingset, a wonderful anonymous gift from a gentlemen that Mount Sinai child life specialist know. He also brought Nicholas a gas powered RC monster truck. It is wonderful to see him smile again.

I will let you know how this Tuesday goes, most likely a weekend email.

Please continue to keep Nicholas in all of your prays and thank you all for the support!!

Michelle, Drew, Nicholas & Skylar.

July 9, 2006

Nicholas is doing well. He started his cycle of Chemo on Thursday and will finish tonight. Was a little sick Friday but that has passed.
Another problem though is he now has the shakes, his feet are shaking and they are trying to figure out what is causing it. First we thought the weaning off the methadone, but that does not seem to be it. Then they are thinking anitbodies that sometimes happens with cancer that attack your nerves, so he is on high dose steroids to see if this is it, but the shaking is still the same. They will give the steroids another 2 days and then see where we go from there as it could also be the Chemo doing it. He had both a CT scan and MRI and everything was fine, they might do an EEG tomorrow. Through all of this his heart is still perfect!

He might be coming home soon!!

Michelle

June 30, 2006

David,

Nicholas had been moved out of the ICU and to the regular pediatric floor. There is even now discussion of when he will be coming home, most likely not for another 3 weeks at least, but soon. We want him to definitely stay for his next cycle which would be next week sometime after the holiday. Also, he needs to stop running fevers, he gets one every morning, which could most likely be the Chemo or the cancer itself, no tests coming back with any type of infections. He is responding nicely to the medication and all the doctors are pleased.

He looks wonderful, sitting up and walking around and playing. We are so pleased and happy!! Please keep all those prays coming as they are truly helping our little brave man!!!

We are so sorry to hear about Corbin. My families prays are with the family.

Your friend,
Michelle

June 16th

Nicholas has started his second cycle of Chemo today. Higher doses and he is doing well. He is getting a little depressed later so we are having the psychologist come in on Monday to just talk to him and see if he is okay. With everything that is going on depression is possible.

They did a lung biopsy on Monday, his lungs are a little damaged but getting better. They believe a virus could of been the issue. The chest tube was removed on Tuesday from this procedure and the broviac was also put in. His kidneys are totally back to normal, so no more tube, he is peeing on his own and is happy that the tube is gone.

I will let you know more as this cycle continues; sorry for the quick note but Nicholas is sleeping and I am sitting here in the dark trying to type.

Michelle

June 11, 2006

David,

Nicholas is doing well, no more seizures, he is currently on blood pressure medicine which he will probably be on when he comes home as well. He kidneys are totally recovered and his bilirubin went from 29 to 9.4 in a week!

But we have another obstacle, he started running fevers again a few days ago and breathing a little heavy. There is a possible lung infection going on. They are going to do a lung biopsy tomorrow as well as put a broviac line in as his pick line is going bad, this line is a longer lasting one which is good for him, he had this when he was waiting for his heart. We are a little nervous of this surgical procedure as they will put him on a respirator and have a chest tube after, we just hope he comes of the respirator in a short time as it was a little more difficult last time. We just hope they find out what this is and treat it as he was due for his next Chemo cycle on Wednesday but this will not happen until any infection is gone.

He class made him a video last week, if we had a camera and you saw his face, it was worth a million bucks!! I have not heard him laugh and smile that big in a long time - it was wonderful!!!

Thanks you all for the prays, they are truly working!!

Michelle

June 2, 2006

We had a bad night last night, Nicholas had a seizure. We went for a MRI today and it was due to extremely high blood pressure that is now under control. He is now alert and feeling better, they still have the breathing tube in from last night and will remove it tomorrow. It was put there as a precaution but he is breathing on his own, he hates this tube and cannot wait until tomorrow until it is out so he can eat. We also got some very good news from the MRI besides the above, the lymph nodes that were enlarged around the liver area are shrinking and the liver also is going down in size, the Chemo (and a low dose he has started on) is working!!!!!

He has also got rid of a lot of the fluid in his body and looks so much better, and I am sure he feels so much better.

Please continue to pray for our brave little man!!!!!

May 26

Thank you David, we need all the praying we can get.

The doctors are so far happy with Nicholas' accepting the first 2 days of Chemo, he has responded so far nicely. But we still have quite a hurdle to get over as they still need to give him 2 other medications of Chemo but need to wait until his liver can accept them as they can be quite toxic to the liver. We will see what happens in the next 2 weeks with his progress and the adding of these medications.

May 24, 2006

Some bad news. Nicholas has cancer. It is caused by his Prograf and very very rare. It is a Lymphoma but t-cell - a post transplant type of cancer. There has only been less than 15 cases in the US and only 3 survivals. He has started Chemo today and we are praying this works.

We are very scared as there is not much information on this cancer. Mount Sinai has called all over even St Judes. They are doing what any other hospital would do to handle this. Please all pray and if there is anyone out there with more information on this type of cancer please let us know.

May 20, 2006

We should have some news on Monday or Tuesday but it might not be good. This unfortunately is looking like either something auto immune or viral, unfortunately a side effect of transplant. They found dilated lymph nodes in an MRI yesterday around his liver area, he is very jaundice and his kidneys function is not so good. The bone marrow quick glance was fine. Hopefully the biopsy of the liver and gall bladder show something or they will need to go in again and get a specimen of the lymph nodes which we want to avoid as he is weak and sick. This is truly becoming a nightmare and I am praying that whatever it is can be treated, we are very scared at this point in time. Please pray for our little man, he is being so brave.

May 13

Nicholas is definitely going for surgery on Monday to remove g bladder. Might be sooner. They still are not sure if liver is being affected by this and will do a liver biopsy as well. We are praying that once surgery is done everything inside him goes back to normal. He had a visit from his baby sister today which made him very happy, otherwise, he is very blah. I gave him your hug from you - thank you!!

May 12

David,
Still no answers on Nick, he seems to be a mystery. Hopefully we will get some answers today as my husband is going above everyone's head to get some. Right now we are still in the hospital since Wednesday and Nick is on antibiotics, his liver is enlarged but they do not know why.
We will let you know what's going on as soon as we can. Please keep Nicholas in your prayers.

Michelle

May 8, 2006

Some good but also some bad news. Nicholas went for his checkup on May 5th and his heart is fine but unfortunately his liver is enlarged. He was hospitalised on Friday night and he came home Sunday. They got his kidney levels back down and his Prograf level back to a right dosage, it was extremely high. They still do not know what is causing this enlarged liver and have put him on another medication for now.

We will bring him on Tuesday for blood work and another sonogram as the first one was not too good, the cardiologist still believe it has something to do with his gall bladder. On Wednesday we will see the liver specialist and hopefully have some answers as to what needs to be done. Right now Nicholas is fine, no fevers tonight so far still keeping our fingers crossed and he is acting like himself. Please keep Nicholas in your prayers and I will let you know what is happening as soon as we have some answers.

Your friends,
Michelle, Drew, Nicholas & Skylar

March 4

I have an update on Nicholas. We decided to schedule his catherization for March 2nd instead of waiting until April 11th. We did this as the medicine they put him on for his migraines (Propranolol) was making him weird, his headaches went away but everything else was happening to him as we were extremely worried. First, he started vomiting at least 2 to 3 times a week, then he started to become flush at nighttime (I believe it was messy with his blood pressure, as this is also what the medication is used for), he was always complaining about his stomach and he was not as active as always. We took him off of this last Saturday and HOORAY Nicholas is back, hopefully his headaches will not come back too but we will bring him to a neurologist on March 6th.

On to the catherization, what a day it turned out to be. We were so proud of Nicholas this day, he actually sat on the table at his 'Test Doctor' and he put the mask on himself, of course with the doctor there, and his fears seem to be going away with his age. He was a little nervous going in but I think next year he will be okay. My little baby is turning into a braver little man! Everything with his heart is perfect and they did not do a biopsy due to this so our worries are gone. Unfortunately, 3 hours after the procedure he spiked a 102.8 fever so they admitted him into the hospital to keep an eye on him overnight. At around 5 p.m. fever was gone and no others fevers since, so we were out of the hospital at 8 a.m. All the time in the hospital he was more concerned about what his little sister was doing, so of course we had to call Nanny's a few times that night.

Next checkup will be on May 5th.

Nicholas is currently counting day the days until March 11th for his Disney Cruise. We will definitely send you pictures when they are all downloaded to my computer.

Take care and hope you and your family are all doing well!

Your friends,
Michelle, Drew, Nicholas & Skylar.

January 20, 2006

Everything went great. Nicholas' labs came back good, kidney levels are fine. They have put him on a new medication for his headaches, which prograf has been having issues with some of the transplant children at his doctors office. He hasn't had a headache in 2 weeks now! He goes for another appointment on March 24 the week after we return from his Disney Cruise and then on April 11th for his annual catherization. He has also slimmed down a bit, all that exercise at school, so they are happy about his weight, he was getting chunky!

Skylar has no heart issues, she will go back around the age of 3 to 3 1/2 years old for a recheck, but her heart is perfectly fine, thank God!!

Take care,
Your Friends
Michelle, Drew, Nicholas and Skylar

December 9

Nicholas will go for his checkup on January 6th. His kidney level in is blood work was still a little elevated at .08 instead of his normal range of .03 to .06 (since transplant). So they will redo the levels again on this day and if they are still elevated then they will worry that the Prograf is affecting his kidneys and put him on another medication to help stop this. I am just hoping it is due to him getting sick so much, he is catching something every other week from school. Skylar will also go and be rechecked and hopefully she will never have to see them again.

October 22, 2005

Nicholas is doing fine heart wise, kidney levels in blood work were a little higher than normal but he keeps getting sick from school. One level is back to normal and the other is 0.8 needs to be 0.3 to 0.6 went to 1.1. His prograf level was high to so they went down on his dose at night. Growing tall and his weight has remained the same. He is currently getting over strep throat and ringworm - UGH I am going crazy with these school sicknesses, 3rd sickness since school started, but cannot keep him bottled up anymore. He loves school!

So I take him November 10th to pediatrician just to redo blood so hopefully everything is back to normal. January 6th is his next appointment. March 11th we go on his disney "Make A Wish' cruise or as he call it 'The Mickey Mouse Boat', so he will be on the sea for his 3rd year out.

Anyway, we are still here and doing well. Hope all is well with you and your family. Take care!

Your friends,
Michelle, Drew, Nicholas and Skylar

P.S. Nicholas will be Dracula again this year for Halloween and Skylar will be a bat. I will take pictures and hopefully get them on email to send out. I think he is going to be Darth Vader in school for the Halloween party and parade - easier for him to deal with this custome in school. Sorry, I will stop rambling now..................

July 3, 2005

Hello,

Nicholas' 3 month checkup went wonderful. He is getting very big, would not believe he is only going to be 5 in September. He does not have to be held back from anything when he starts school in September.

Skylar was also checked out the same day. Her EKG and Echo showed her heart to be of a healthy baby girl! She will just go back at 6 months old and if nothing is found she will never see Nicholas' doctors again as a patient.

Sorry, if I am not in touch for awhile but two children now keep me very busy! Hope to talk soon and hope everyone is well!!

Michelle

April 16, 2004

Nicholas catherization went well yesterday. Everything looks perfect, his pressures are great and so are his arteries, blood work all came back great as well, no biopsy this time around.

He actually remembered the floor his 'Test Doctor' was on as soon as we got off the elevator he screamed his head off, my husband and I had to calm him down and tell him that it would be okay. The doctors were all great with him talking to him like he was a little man, they cannot believe how big he has gotten in a year, all the
nurses were lined up at his bed watching him tape himself in with all the tape he could get his hands on (he has always been a hit with the nurses). He has had a fascination with tape ever since he was hospitalized, and it keeps him occupied for a long time.

His next appointment is July 8 at which time his baby sister will be here already, we will also be taking her to see his cardiologist just as a precaution.

Take care,
Michelle

April 1, 2005
Just to let you know Nicholas' catherization was postponed until April 15th. They had to postpone as he is sick right now with a cold and has a runny nose and cough. Otherwise, all is well here. He is getting better and of course nothing slows him down. I will let you know when his results are in, please keep him in your prayers, this procedure makes us very nervous.

Feb 18, 2005

David,

Nicholas is doing wonderful. He went for his 3 month checkup on Friday the 11th and everything was great. The only problem was that the lab lost his blood work so we had to go back today for a blood draw. Unfortunately, they stuck him 5 times and nothing wanted to come out, so they are going to wait until he has his annual catherization during the week of March 29th. Keep
you fingers crossed as Nicholas hates this procedure, known to him as 'The Test', gets very upset at the mention of this so that day is not going to be a delightful one. I do not like these days either makes me very nervous!

He also went with me to my doctor today to check the baby and actually helped my doctor with the monitor to hear the babies heart beat, but when everybody talks too much about the baby he gets upset and turns away, but he'll talk about her all day at home with no problems.

Hope everything is going well with you and you are feeling great!

Your friends,
Michelle, Drew & Nicholas

15th November 2004

Hello,

Nicholas went in for his three month checkup on Friday and everything is wonderful. Dr Gelb is very pleased with his progress so hopefully not another visit until three months from now. We are just waiting on his Prograf level (his medication) and as long as that is at a good level the visit will wait three months (which will be the norm).

We were also so happy his vein came back on his hand as they were able to draw his blood quickly: he screams his head off as he hates needles, so this time it was better than usual.

Drew, Michelle & Nicholas

16th August 2004

Results are in and nothing is wrong with the MRI, it is either the medicine or just a case of headaches. But thankfully all is okay with him!

Michelle

15th August 2004

..... Nicholas went for his checkup on August 13 and his echo, as his doctor put it, is 'AWESOME'. He said he is doing great. He lost 2lbs, so he is 50lbs., they are happy with that as he weight has been a concern, and he has shotup in height (getting very tall).

He also had to have an MRI done as he has been having headaches, and when he gets them they hurt really bad and only sleep helps most of the time. Other times he vomits.
They think it is the Prograf but they want to make sure. So we brought him to the Neurologist on August 9 and he said let's do the MRI just as a precaution. So hopefully we will know the results tomorrow. It was a long day in the hospital on Friday with his appointment then this procedure which they had to put him to sleep for - he screamed and fought as he hates that mask. He goes back in November. I cannot believe it has finally come down to once every three months.

He is getting ready to have his 4th birthday party, has to be a monstertruck party. He loves Gravedigger.

Keep feeling well and enjoy yourself.

Your friends,
Michelle, Drew, & Nicholas

31st March 2004

Nicholas had his cardiac catherization yesterday and he had 0% rejection - hooray! They said everything looks great. He is off the pepcid now (he threw the bottle in the garbage himself), so he is only on prograf and aspirin which he will remain on for the rest of his life. His next appointment is on May 21 just before we go away to Florida for a 2 week vacation which we all need.

Thank you all for the prayers!

Michelle, Drew & Nicholas

14th March 2004

Nicholas went for his checkup on March 12 (1 year out!) and everything looks perfect. He is doing extremely well. They have taken him off of 2 more medicines, his bactrim and nystatin. So he is currently on 3 medications and he will be coming off of one more within another 2 to 3 weeks. He will stay on the Prograf and aspirin for the rest of his life.

He is going for his annual catherization/biopsy on March 29, so everybody keep those fingers crossed that everything goes well (this proccedure always makes us nervous). I'll let you all know the results.

Michelle, Drew & Nicholas.

25th February 2004

Nicholas is doing well. He is currently getting over what they say is a slight pneumonia. He is on antibiotics and only has the cough now, the fever finally stopped on Friday after 4 days. He will have his cardiologist checkup on March 12 (his 1 year out).

16th January 2004

Hello,

Nicholas went for his monthly checkup today and everything is perfect. He is coming off the steroids totally as of February 27, then he is scheduled for his next visit on March 12 (which is the 1 year anniversary for his new heart). He then goes for his biopsy on March 29 and hopefully they will take him off of the bactrim and nystatin after that. Doctors are pleased with his progress and we are happy with the good news every time.

Bye,
Michelle & Drew

13th October

Hi All,

Just wanted to let you all know that Nicholas' 7 month biopsy results on 10/10 came back with 0% rejection (Hooray!). He is doing wonderful and is now only going to the doctor once a month. Next time we go back on 11/7 they will review his labs and medicine and most likely be taking him off of the steroids for good. His doctor is very pleased with Nicholas' test results and checkups everytime he sees him.

Michelle

18 August

Everything is going great. Nicholas' doctor is pleased with his progress and he will probably be going to see him every 3 or 4 weeks soon instead of every two weeks.

28th July

Hello,

We got great news from Nicholas' biopsy from Friday, July 25. His rejection is totally gone - it came back '0'. He is almost totally off of the steroids, down to 1 cc once a day (this makes him moody and gain weight). We are so happy! He is doing wonderful!

Michelle

15th June

Hello,

Here are some recent pictures of Nicholas. He is doing great. We go for a checkup on June 20 and the doctors are pleased with his progress. He is getting over a little bit of rejection. He was at a level 2 in May and on June 2 we found it is going away at a level 1a. The doctor does not seem to be worried, everything looks great by echo and he looks fantastic.

Happy Father's Day to all you Father's out there.

Bye,
Michelle, Drew and Nicholas

19th March

Hello all
Well it's Wednesday March 19 .........and guess what !! Nicholas is HOME..... he is doing great with his new heart. We have to go down once a week for a check up, for about 3 months. The doctors are saying that his heart is at 100% and as long as he takes all of his med's he will be fine. We have to watch him for rejection and infection so NO one that is sick or was sick can come around him.
So all is good and thank you all for praying for him.

Drew, Michelle & Nicholas.

14th March

"Nicholas has finally received his new heart. On March 12 our son finally had his surgery and is doing great. They are talking about taking the breathing tube out tomorrow. Today he looked up at me and my husband and grabbed our noses (it a game he plays) and his nose and threw them across the room. He has been heavily sedated now as they want him to rest up but is doing wonderful. I'll let you know when we are home!!!!!!!!!!!!!

I want to thank everyone for all the prays and I especially want to thank the family of the child who saved our son's life, God rest his/her soul and God bless the parents."

Michelle & Drew

4th February 2003

Nicholas is doing good. Finally just got over a bad fever, it was running 104 for 2 days. Finally on Sunday his temperature was normal again. He had a small infection they think was from his engrown nail. Thankfully he is back to himself. He is the King of the Pediatric ICU, they all love him.

Unfortunately no news of transplant yet; it was 3 weeks yesterday he has been in the hospital.

I will give him a hug from you and tell him you are still praying. He loves when I go and give him hugs and tell him they are from his friends who are praying for him. He loves people!

30th January 2003

Nicholas is 2 years old. He is awaiting a heart transplant in the hospital. He has been there for 2 weeks now and is getting very moody. He needs a heart soon.

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