June
12
Nicholas
is still in ICU, feeling a little better, not so much pain anymore
and no more fevers. Blood pressure is back to normal but still
not eating and has some diarrhea which they need to get under
control before he can get out of ICU, they are worried about dehydration
and blood pressure drops if that happens. Nicholas had a GI test
on Friday which the biopsy results show no cancer there. They
did say he has a mild case of colitis which with the antibiotics
he is on and time will heal itself, also a lot of inflammation
in there that is also why he is not eating as this is all very
painful. He also has traces of an infection due to becoming immune
to antibiotics (I believe it is VRE but I am not definate on that
as I am drawing a blank right now), so they are giving him a super
antibiotic to help cleared that up for 7 to 10 days. They are
also talking about a CT scan tomorrow as his bilirubin is a little
high and the ultrasound yesterday did not show anything funny.
They are talking about giving him a low dose of chemo tomorrow
to cover him as his second cycle was suppose to start June 4th
and with everything going on it has not happened yet and they
do not want the cancer to take control.
We have also talked with a doctor over there who does stents and
we might be having that done as soon as Nicholas' Hemmoc doctors
say it is ok up in Albany, as the rate we are going he is not
making to Sinai anytime soon. We are hoping it clears up a lot
of issues with his stomach. They also did an echo up in Albany
on Sunday and his heart function is perfect.
Not sure how long he will be in the hospital but he is starting
to feel a little better each day so hopefully soon. He needs to
also build his strength up again as his legs are shaking and weak,
also got those tremors back from the chemo which he is back on
his Neurotin medication to help with this.
May
27
Nicholas
is home. Came home yesterday evening. He is doing well. His doctor
told us his liver numbers are the best she has seen from him yet,
so by this she believes the treatment is working!! First cycle
is over but we are waiting on the stent issue, we will go to Mount
Sinai this Friday to see when this is going to be done as his
hemmoc doctor wants this complete before his 2nd cycle begins.
Right now he is taking a much needed rest, we all are!!
May
23
David,
Nicholas first cycle is over. Chemo went well and he tolerated
all medications like a warrior. He came home on May 11th, best
birthday present and mothers day gift for me. Went back in on
Monday the 14th for his in clinic chemo and also found out his
white count is zero. Unfortunately, on Wednesday the 16th he spiked
a fever so admitted into the hospital on that day. By that night
he felt better and didn't run any more fevers as he was put on
antibiotics. He is still there as he ran a fever again on Sunday
night with a new infection and we also had an issue with his blood
pressure dropping. He is doing much better now and hopefully will
be home soon as his white count is starting to come up now and
his blood pressure is back to normal. His next cycle is supposed
to be around June 4th as long as all his numbers are good or unless
his cardiologist decides to do the stent; still waiting on what
is going on with that.
May
10
We
now have a roadmap of treatment. Unfortunately, his doctor has
been talking with John Hopkins and they believe this is a relapse
and not something that was hiding. Relapse with t-cell is very
serious and dangerous. I do not know if I agree with them as this
child has not been on chemo for a month and nothing has changed
with his numbers. I still believe this was something hiding just
like I believe my son will beat this horrible sickness.
He is on a 6 cycle treatment, after the first cycle he will most
likely has his shunt put in. After the 2nd cycle he will go and
have bone marrow harvested. After the third cycle a biopsy and
then continue until the 6th cycle where after this they will go
back and give him a high dose of chemo and then transplant his
own bone marrow back into him and this is suppose to cure this
t-cell lymphoma. They used this treatment on a liver transplant
who survived this cancer after relapse.
Right now we just have to continue to pray Nicholas will get better
and not sick, as if he falls sick that will not be a good sign.
Please keep Nicholas in all of your prayers.
Your friend,
Michelle
May
8
Nicholas
took the news well on Sunday, as you can see with his new haircut.
We told him about getting sick and having to be away from people
again when his counts are low and possible hair loss. He is truly
one of the toughest young men out there and I am so proud of his
courage, he teaching me so much about life that I never really
knew or understood until I had him. Children are just the best
thing in life!!
Everything is going well. Nicholas had his marrow and spinal tap
yesterday and everything looks clean as can be. He started his
chemo last night at 5 pm and has tolerated it like a champ. He
will get three more days of 3 chemos and if everything continues
to go well he will be home on Friday. He will then go back on
Monday for a 2 hour in clinic chemo and once his numbers (white
count as that will go down) are good he will go into Mount Sinai
for the shunt in the vein going to his liver from his heart so
that is fixed and working properly, we believe Dr Love will be
doing the procedure, he does all of Nicholas' catherization and
is a brillant doctor.
Not sure on the total road map of treatment at this point, should
have it tomorrow. But they are talking more like this is not really
a relapse but minimal amounts of the original cancer that just
needs to be wiped out, it is really a small amount. We believe
so far the plan is 2 or 3 cycles then a biopsy. We are just hoping
this time around it is a lot easier on him as he is more healthy
than last year.
Please continue to pray for our little man.
Your friend,
Michelle
May
3, 2007
We are preparing for Monday and trying to keep it together but
I find myself turning into another room so Nicholas does not see
me cry. We will tell Nicholas on Sunday what is going on, we want
him to enjoy his weekend at his grandparents house riding his
quad. We were notified yesterday that the chemo is going to be
intense and his doctor has told us that she was told there is
only one survivor who relapsed with this cancer, she is hoping
Nicholas will tolerate the treatment at this point. He continues
to not look sick and we are just praying that since is he more
healthy today than he was last year that this will not be too
hard for him and he will again beat this horrible sickness.
I will try to keep in touch and let you know how next week goes,
he is supposed to have a 5 day chemo course in the hospital. We
will find out all the details on Monday.
Michelle
May
1st 2007
David,
Unfortunately, I am writing you with an urgent prayer request.
We just found out today that the cancer is back. His biopsy showed
a 10% sign of the T-cell lymphoma in his liver. It is nothing
like what he had but it's there. Will are going in on Monday for
a bone marrow test to make sure nothing is there and then he will
start a high dose of chemotherapy again but a different kind.
We are very upset and confused and scared with everything that
is going on with his liver and pancreas. Nicholas just finally
started to recover from everything and now he has to go through
all these toxic medications again. We have not told him and we
are not sure if we are just yet; right now he thinks he is just
going in for test and some chemo.
Please keep Nicholas in your prayers.
Your friend,
Michelle
April
18
Sorry
I didn't get to you sooner. Nicholas is home, he got home yesterday
and is doing great. He is still on IV antibiotics until Friday
which we do at home (My husband is great with the IV's). He had
two issues going on last week, a pneumonia and an infection, which
both should be gone now. We still have no results, just praying
we do not hear the word cancer again. We do know there is something
going on with his pancreas, it might be damged or he could be
a clogged duct somewhere, tests are being done with the biopsies
and the GI doctors are involved and hopefully we should have some
answers soon. We go to clinic on Monday morning for blood work
and hopefully answers, so I will email you next week.
Through all this we found out that the immunosuppressant drugs
can damage your pancreas, and prograf almost always damages your
kidneys (which is why I guess they do not use this drug on kidney
transplant patients). So the kidney doctors in Albany are now
looking into how much prograf he was on and if it caused any issues
with his kidneys since his kidney levels get elevated sometimes
when he has procedures. The good thing is if it did do any damage
he is off of this drug now and his kidneys will get better with
time. We knew prograf can cause issues with the kidneys prior
to transplant but didn't really know it happens a lot. There is
so much information that is left untold about transplant and I
guess some people find out the hard way, but what other choice
do you really have. I just hope Nicholas is finally going to get
a break and start enjoying his childhood.
Dealing with doctors is exhausting and mind boggling. This whole
transplant journey (which I wish on nobody but I am glad my son
has his second chance in life due to it) gets more and more confusing
and I wish they could just come up with better medications that
do not cause so many bad side effects.
Talk to you soon,
Michelle
APRIL
10
Nicholas
could all really use the prayers right now. His surgery went well
yesterday but he is in a lot of pain in the hospital. He ran a
fever of 103 this morning, which broke, and his 02 stats were
a little weak so they have an oxygen mask on him. We are awaiting
biopsy results, his liver looked a little greenish and he had
a few hard white bumps on his pancreas that are being biopsied.
His stomach looked fine and they fixed his hernia as well. We
found out his last attack was a pancreatitis attack which he no
longer shows signs of but they are keeping an eye on that. His
blood work is coming back fine but we are very nervous at this
point and just want to know what is going on. Hopefully we will
have some answers tomorrow. Nicholas just wants to come home.
Michelle
April
8, 2007
Nicholas
has not been feeling too good lately with his stomach so we cancelled
going down to the Bronx to be with the whole family. Last weekend
we tried to go out to dinner for my Mother's birthday and a half
hour into being there Nicholas had extremely bad pain so we rushed
out of there. He spent Sunday night in Albany Medical Center as
he ran a fever of 103 on Saturday night so we rushed home at 5:30
in the morning and my husband brought him up to the hospital.
They believe it might of just been a bug as he also could not
hold anything down that night of the fever.
Tomorrow is a big day. Nicholas is having his surgery and will
be in the hospital for at least three days. They are doing a liver
and spleen biopsy and also looking at his stomach as the CT scan
on Thursday showed his stomach lining was red and thickened, they
are also pulling out the hernia. The doctor pulled him off of
his at home chemo pills last Tuesday and he also got his last
dose of Vincristine a week and a half ago. We are a bit nervous
about tomorrow and we are praying for good news as well as finding
out what is causing all his stomach pain.
Please keep Nicholas in your prayers tomorrow.
Happy Easter and I hope your day is filled with happiness.
Your friend,
Michelle
March
10, 2007
Nicholas
had his IVIG transfusion yesterday, the second of six. He always
gets a reaction of a severe headache and chills half way through,
but the doctor says he needs these to help him get rid of infections.
She believes these will help as Nicholas keeps getting sinus infections
and his antibodies are low due to all the chemo drugs. He also
had another ultrasound to view the sack of fluid that is back.
They noticed that his liver is a little enlarged as well as his
spleen, but she does not believe it is the lymphoma again as all
of his numbers are getting back to normal. We tried to go for
a ct scan but Nicholas after the long day and his transfusion
could not keep down the contrast for the scan. He drank half of
it before he threw it up, so we had the scan cancelled and rescheduled
for Monday morning. I knew all these tests were going to be too
much on him yesterday but we had to try as they are very important.
Once the CT scan is done she will decide what steps to take next,
she believes this is happening due to medication toxicity (not
sure if I spelled that right), all the medications he has been
on might be becoming to toxic to his body now. If this is the
case she said we will have to stop the at home chemo pills. She
is probably going to order a liver biopsy soon as well. He has
one more dose of Vincristine this month so a biopsy was suppose
to be done after this but might get done sooner. We also go on
the 16th for his cardiology checkup, so Nicholas has another busy
week of doctors and therapy.
Skylar is also sick, she has an slight ear infection and is on
antibiotics. We are so lucky to have children that take medicine
so good. I think watching her brother shows her how important
medicines are too take. She is already feeling better, not that
you could really tell she was sick, it never stops her.
Drew and I are just exhausted, but Nicholas and Skylar are the
important ones so we will get some rest eventually. Take care
of yourself and we will talk again soon.
Your friend,
Michelle
January
27, 2007
Nicholas
is doing well considering everything he has been through since
Christmas.
Well, he started running fevers during Christmas time, we found
out he had a sinus infection and those chicken poxs were coming
back, so back on antibiotics. We also found out about a staff
infection which they try to treat with antibiotics (iv at home
for 7 days) but unfortunately this did not work. They had to pull
his broviac line as it was bad, everything went well with that
surgery. He was scheduled to get his port-a-cath on the 22nd,
which they want to put in due to his vincristine pushes in clinic
and also because it is so hard to get blood from him, this line
is under the skin so no exposure and less chance of infection,
people live with these lines for years. But this was cancelled
as we saw cardiology on the 19th for his checkup as they saw some
double heart beats on his echo. So on the 22nd he went in for
his annual cardiac catherization (2 months early), everything
went fine. All the pressures where great, no signs of double heart
beats the whole 1 1/2 hrs he was under and the best of all NO
REJECTION. So they cannot explain what happened with his echo,
but we will go back on the 9th of February. He is scheduled for
his port-a-cath now on the 5th, they pushed his vincristine treatment
a week back to that day but he will go to clinic on the 1st for
blood work and a checkup. He needs a break - a well deserved one!!!!!!!
With everything going on he has been a litttle moody but yet extremely
good about it all. He is asking a lot of questions about his medications
and why he goes to so many doctors (especially his heart medicines)
and will Skylar ever have to take the same medicines. We try to
explain but now he is getting older and we are going to have to
figure a way to explain it to him where he truly can understand
a little bit better on what happened to him when he was younger.
He is doing wonderful with his therapy. His therapists are so
thrilled with his progress. We go to his school this Friday to
discuss the Section 504 which he is classified under as he is
limited to one or more major life activities. Not too thrilled
at the way his school has been acting but we are definately people
who do not back down on anything to do with our children. So this
meeting should be interesting, at least his home tutor will be
there with us. We are also looking into getting a neuropsychological
testing done, this is very important to do with children that
are on chemo (especially vincristine and methrotrexate, which
he is on both). This will evaluate his brain and make sure the
medications are not slowing his learning down. They usually do
this testing within the first year of diagnosis and a few years
later. He has not been showing any signs of not being able to
keep up to where he should be, but it is important to do.
I hope all is well with you and your family. We think about you
often and are thankful everyday that we found such wonderful friends
in 2hearts.
Take care and please keep Nicholas in your prayers, especially
on the 5th when he is in surgery.
Your friend,
Michelle
December
28, 2006
He
is starting to feel better. Unfortunately, he has a double sinus
infection and the chicken pox were coming back, so he is on some
heavy duty antibiotics. We had to take him up to his Hemmoc doctor
in Albany yesterday as he was running a 103 fever and we found
out about the infection and the poxs. Then today we got called
as one of his cultures came back positive, so up there again for
more antibiotics. Hopefully, we do not hear from them again and
all is okay with these blood cultures. It has been a crazy two
days and we are all exhausted.
With all that said and done he did enjoy his Christmas and got
lots of stuff. We have a plan to go through all his old toys this
weekend and get the good stuff together and give them to children
who do not have any toys.
Hope you are feeling well and your holidays were good. Let's all
have Happy & Healthy New Year this coming 2007.
December
26
Unfortunately,
Nicholas is not feeling too good today and we will be taking him
to his Hemmoc doctor in the morning. He is running a fever of
101.7 which is the second time today. So hopefully this is nothing
serious but I will let you know once we find out.
November
18
Nicholas'
preliminary results from his MRI are normal. His EKG is almost
back to normal so cardiology is not too concerned but he will
see them again December 15th for a checkup. He goes back to Hemmoc
on November 30th, every two weeks with them now. Finally started
PT today, the gentleman Andrew is wonderful and Nicholas clicked
right away with him, another person will come for the OT part
of his therapy so hopefully that will start next week.
Unfornuately, we are having some issues with his school. They
tried to cut his learning down to 3 days instead of five.
November
14
Nicholas
is doing well. Some pains here and there due to his maintenance
chemo's which he started almost 2 weeks ago. We also brought him
to a neurologist who told us why he has tremors. Seems the chemo
destroys the barrier around your nerves and he is slower recovering
from this which can also be painful but they should fade in time
and with PT/OT which we finally got approved from his insurance
for in home treatment, which should be starting any day now.
He is also going in for an MRI of the brain on Thursday. He was
complaining about burning on the back of his head so the neurologist
wants to make sure everything is okay. He has his checkup with
Hemmoc as well this day. And also we need to have his EKG redone.
We went to his cardiologist checkup on Friday and his echo looks
great but the EKG did not look the same, could just be messed
up leads so we will have a cardiologist up in Albany just redo
the EKG and fax it down to NYC. So we will have a very busy day
this Thursday.
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
Nicholas
is doing very well. We went for the CT scan on Wednesday and most
of the results were back and with wonderful news. Nicholas liver
is back to normal size as well as his lymph nodes, liver function
is a little bad due to all the chemo and that should go back to
normal once he is all done with treatment. They do believe the
tumor is gone but with this being such a rare and smart cancer
will give him another cycle or two before his biopsy.
If the biopsy shows everything is good he will be put on a maintenance
schedule for about a year. His blood work has also not shown any
abnormalities for awhile now which is also a wonderful sign.
His
fourth cycle started Thursday and went perfect. He also did not
get admitted this time for the two days. We went home Wednesday
after the scan and got him to drink alot of water at night and
in the morning, so when he went in Thursday to clinic he was well
hydrated and ready for chemo. Since he got all his chemo in clinic
and was totally fine they said go home. He goes in next Thursday
just for one medication in clinic, about an hour run and will
then rest for 2 weeks. His spirits are much better and he laughs
and smiles so much it is the greatest thing to see.
His
birthday is just around the corner but this year will be quiet
at home due his treatments. One wonderful thing though is that
a local Ford dealership is having a benefit for him the day after
his birthday, it will be a family day with a carnival, food and
all sorts of fun, so I guess he will probably have the GREATEST
birthday party ever!! His numbers should be good then so his doctor
does not see a problem with him going and since it is outside
we will bring him for awhile so he can see his friends and family.
August
14, 2006
Transfusion
at Albany Medical went well on Monday. Nicholas also met some
other children while waiting for transfusion to be over. He seems
to like Albany medical, guess it is also new to him.
Nicholas'
clinic visit on Thursday went somewhat well, his potassium was
low so he had to get some fluids in him. Unfortunately, they found
this out just as we left the parking lot to go home, we were called
on our cell to return so Nicholas was not too happy. They sent
us home with a supplement and I am also trying to get him to eat
more bananas. Blood work was good except for the potassium, white
count was still down but we continue giving him his neupogin (hope
I spelled right) shots up until yesterday, his doctor called and
said to stop as he will go into the pediatrician tomorrow for
a CBC. The doctor also said his liver feels smaller than last
week!! We will return on Wednesday to Mount Sinai for a CT scan
for his liver and be admitted for chemo for two days as long as
his numbers are good, so this will start a new cycle.
I
will let you know how everything goes this week. Please continue
to keep him in all of your prays.
Your
friend,
Michelle
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.
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.
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!!
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.
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.
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!!
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!!!!!
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.
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.
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.
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!!
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.
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
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.
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
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.
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..................
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!!
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.
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.
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
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
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
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.
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).
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
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
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.
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
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
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.
"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
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!
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.
|
