David,
Unfortunately, I am writing to let you know that Nicholas has
passed on; we lost our little man to his long hard battle last
night. He fought hard and for too long, it is now time for him
to rest. We just finished making arrangements and will bury him
on Thursday. My baby has gone to a better place with no more pain.
Thank you for all the prayers and comfort for the last few years
and please always remember Nicholas and the courage he had; he
is my true HERO!
I will keep in touch but now I need to heal. I do not know how
I can going to live without my little man but I know he is in
a better place!
Michelle
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
