Road Map

Many of you have asked about the comment made in the last post regarding the transplant division.  In my non-medical way, I’ll try to give you an overview of Jake’s “road map” – the term they use for his treatment plan.  Jake will have 3 sessions of chemotherapy that include 5 rounds each – numbers to paper that is about 15 weeks per session.  Overall, that is 15 rounds of chemotherapy, 15 different stays in the hospital at about 4-5 days each (not including surgery and other things).  We are at #2.  The treatments are 3 weeks from day zero, meaning they are actually about 2 1/2 weeks apart (as long as his counts recover properly each time and there are no infections to throw us of – like recently).  During this first 15 week session, they will collect, or “harvest”, his own stem cells and freeze them to be put back into his body later, thus the transplant division comes into play.  This will be done somewhere between chemo 4 and 5.  At the end of the 1st session, they plan to take Jake into surgery to remove the large mass.  Right now the chemo is shrinking the mass in his abdomen (the one about the size of a small grapefruit).  They feel that after 5 chemo treatments, this mass will shrink as small as it is going to.  The remainder of the chemotherapies won’t really make that mass smaller, those chemos are to continue working on all of the cancer in the bones and liver.  After the surgery, Jake will have another session of chemotherapy – again, 5 sessions in Round 2 (another 15 weeks).  At the end of this time the stem cell transplant will take place.  This should take us somewhere into the summer hopefully, because we will need to farm out kiddos as Jake will be hospitalized in isolation on the 8th Floor for 30 days.  My understanding is that we will then go on to Round 3 of chemotherapy – another 5 sessions (15 more weeks), then radiation, followed by Accutane treatments.  This will finish up our first year.  At that time, we will come together, assess where he is, and pray for NED (No Evidence of Disease).  However, many children are not completely disease free in which case, treatments pursue. If this is the case, our discussions will center on if we can stay in Houston or head to one of four cities that continue with the next phase of Neuroblastoma treatments.  All of this can change at a moment’s notice… it is his “road map” and we’re told to expect detours along the way.  We’ve already seen how it truly is day by day.  It’s all just a big lab project and sometimes I feel like our son is the center of someone’s science fair.  I just remind myself that God gave us these things called science to do good, to heal, to allow life to pursue… that helps me close my eyes and comfort Jake when my baby is crying from all the pricks.  And this information gives us something in which to plan from… sort of.