On
Once
Sadie has had her transplant, she will be in the hospital for about 8
weeks. During this time only one parent
can stay overnight with her. When Sadie
is discharged from the hospital, the family will have to stay in the
area for
more than 100 days. Doctors will need to
keep close tabs on Sadie’s progress and be sure her body is accepting
the
marrow. The hospital providing these
procedures is 170 miles away from their home.
On top of the emotional toll this has obviously taken on Sadie
and her
family, they will have many mounting expenses.
Between medicals bills, lodging, food, and other expenses, the
cost will
add up very quickly.
Thank
you for helping us raise money towards covering the expenses that are
continuing to rise, so they can stay focused on Sadie and not have to
worry so
much about the financial aspect of this situation.
Whether you can give financially or not, you
can still help by keeping Sadie and her family in your prayers!
Here is a summary
of the last few months: As you know, Sadie received a bone
marrow transplant in November and around the first of January, was able
to leave the hospital and go to a nearby place so she could visit the
clinic as needed…several times a week. The chimerism test showed
the donor cells at 93% with the goal being 100%. In mid January,
Sadie’s platelets and red blood cells were in normal range. JMML
is an aggressive cancer and need to be treated aggressively.
Many visits to the
clinic are needed to monitor Sadie’s progress and keep medicines in
check. They are also monitoring her liver enzymes since
they are up. In mid February, Sadie developed a rash that quickly
covered her entire body. After testing, the doctors had said she
has acute GVHD (graph vs host disease) in her liver. The
treatment regiment for the GVHD in the liver will last quite a
while. She continued to have a lot of problems with high liver
enzymes and returned to the hospital for a few days to get the proper
balance of drugs. Blood pressure and heart rate are being closely
monitored to keep them in as normal range as possible.
Eventually, her levels have come down considerably although they still
remain a little high. By March, Sadie’s donor cells are at
100% and continue to stay there. It is a constant process for the
clinic to monitor and adjust meds as needed. She is also cutting
teeth during this time and is not allowed any meds for that. She
continues to have a good appetite and her spirits are high.
In early March, Sadie celebrated her 2nd birthday!
Yeah!
April began
fairly quiet but changed about the middle of the month. She woke
up vomiting and became dehydrated with an extremely high heart
rate. She was admitted to the hospital and moved into the
pediatric intensive care unit (PICU). Her condition was critical
and they placed a breathing tube down her throat. (It remained
for 4 days.) She tested positive for Rotavirus. They continued to
work to stabilize her and were considering placing her on life support
but she showed signs of improvement at the last minute.
PTL! After about 6 days, she was released from
PICU and moved into the BMTU (unit where she received bone marrow
treatment previously). She was there for about another week
before she was released. She began to regain her strength to sit
up and walk again. She continues to improve daily but will be in
the Chapel Hill area for several more months. Your prayers and
support are most welcome as they journey through this!
I remain in constant praise of God. I
believe He heard our prayers and showed us a miracle.
Jeff
and Candace Hulsey