Boston - Haavahd

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.