Sorry
for my delay in updating everyone. We have returned from Boston with
hopefully some more information and plans to move forward. It is a huge blessing that our Seattle and
Boston teams are working together very well.
Let
me catch you up to where we are at now.
We have spent the last year trying to wean Max off of steroids used to suppress
his immune system and keep his autoimmune disease under control. We added a Dexamethasone pulse treatment
three days a month to aid us in tapering off of the daily prednisone. While we
have had some strides in reaching our goal we have also had many setbacks
including many small viral infections, hospitalizations and flare ups that continue to hold us back and now after a year of
double steroids we are still at the same place we were last year, except he is now 4 ½ with the bone
structure of an 18 month old and is now starting to develop some issues from
long term steroid use, one of which is called hypogammaglobulinemia which means
he has low IGG levels and will require IVIG infusions (similar to a blood
transfusion), for many kids this is a
lifetime complication.
All
of our specialists are in agreement that we need to begin a new course of
treatment. However, with the new
development of hypogammaglobulinemia and
very low Lymphocytes and B-Cells we are
left with a difficult decision.
The
most aggressive option that has worked in the past and that everyone is in
agreement on is another round of Rituxan a chemotherapy agent that generally
treats lymphomas and is responsible for completely obliterating all your B-cells
and hopefully any circulating attacking antibodies. The problem is that Max’s B-cells have yet to
repopulate from his last round of chemotherapy, which mixed with a pretty
significant reaction during his last round of chemo makes this choice a very
risky and potentially fatal option and not one anyone is taking lightly.
A
second option that we are looking into is an experimental change to a drug
called cell cept which is generally used to treat patients following bone
marrow or organ transplants to suppress the immune system enough so that the
body doesn’t reject the newly introduced organ. With the hope that we will suppress a different
part of his immune system that coupled with continued steroids will have a
broader suppression of his immune system will hopefully shut down any remaining
attacking antibodies.
Both
options paired with his current steroid regimen are very risky. Both options
present a very realistic possibility of secondary malignancies, and
reactivation of latent viral infections that can be fatal, they both also increase the susceptibility to infection,
including opportunistic infections, fatal infections, and sepsis. We
do know that Max had minimal visible side effects with his last round of
chemotherapy, while it was handled with 4 weekly infusions that lasted 6-9
months, the cell cept would be a twice daily oral option that could possibly
have more gastrointestinal problems that would make him feel like he had the
flu everyday for the foreseeable future.
After
much prayer and research and discussions with doctors, pharmacists and many
specialists, we have chosen to move forward with cell cept, we have all agreed
that we will give it a try for 2-3 months while Max continues on his prednisone
and dexamethasone and then all the prophylactic meds that will need to support
this new treatment, this 2-3 month trial will buy us some time to go
through some more cancer scans and be seen by immunologists and
allergists here to work out his allergy to the last round of chemo that we did
with the intent that in 2-3 months if we haven't made much progress we will
switch back to the chemo. We have lots of eyes keeping an eye on Max now,
he will likely develop neutropenia (lowered ANC blood counts) similar to how
chemotherapy works and we will have a bone marrow transplant team following him
while on this cocktail of meds.
We
all appreciate your continued prayers and the help that we received while we
were in Boston and our girls were at home trying to start a new school
year. While we feel a little anxious with
this new experimental plan, we are confident that God is continuing to watch
over us and guide us in these difficult decisions.
While
at Boston Children’s Hospital we were able to squeeze in quite a bit and even
was able to enroll Max in a research study that is being done by Harvard,
Zurich, and Oxford and should hopefully be compiled and presented in February at
the research summit in London. We didn’t have much extra time while
in Boston, but did get to spend a little
time in Haavahd Yahd exploring the campus, Max loved reading books in the world’s
only Curious George Library in Harvard Square.
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