Tuesday, December 25, 2012

Trip to California:part 1 (Daron Update)

If you have checked Daron's caring bridge page lately you will have read the unfortunate news that his leukemia has relapsed.   When his August bone marrow biopsy showed residual disease (instead of being completely clear of cancer) we knew that placed him at an elevated risk for a relapse.   Despite knowing that we all still hoped he'd be in the category that didn't end up relapsing or at least have a number of healthy years before having to fight fight fight yet another battle.  But, that didn't happen so now Daron is having to continue to fight this battle that started almost 14 months ago.  It's so scary and very exhausting but he is so brave and never even complains.  His quiet resilience never ceases to amaze me.

The conventional therapy for relapsed ALL is to do monthly chemotherapy plus additional infusions of my stem cells.  The chemotherapy is supposed to knock the cancer cells down enough that my cells will have a chance to attack and kill off the remaining cancer cells.  He will NOT receive my cells yet because he has to be off of immunosuppressants first to make sure he doesn't have a flare of graft vs host (which is currently less likely since he is still on immunosuppressants).  A graft vs host flare most likely occurs in the first 4 weeks after stopping immunosuppressants.  If he doesn't flare and still has evidence of leukemia on his bone marrow biopsy (and is still stable) that is when he would receive my stem cells.  They can give him more than one infusion of my stem cells and collected enough of my cells this time for 3-4 infusions.  A graft vs host flare can be very dangerous (although they need some graft vs host to occur in order to get rid of the leukemia) so that's why it's important to wait and see if he flares once he is off of the immunosuppressants instead of giving him the cells right away.

Honestly, the success rate of conventional therapy for curing relapsed ALL is not great.  Thankfully, there are new trials available for patients in Daron's situations that seem to offer quite a bit of hope.  So while he is currently receiving conventional therapy they are also looking into studies in case the conventional route fails.

Daron is currently doing okay.  He is in a lot of pain most of the time - mainly his feet and legs. He's also been extremely tired (sleeping many many hours every day) and experiencing some neurologic symptoms like short term memory issues.  We aren't sure why he's been having the neurologic symptoms but are hoping it's related to a drug he's been taking for the leg pain.  He's been tapering off of this for a week, so hopefully he will be more awake and able to function better soon.  Please please be praying for complete healing for Daron.  Please Lord grant us a miracle!




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