The road ahead is a bit clearer now...

Caleb loves his little "ra" so much!



A little photo shoot from last night. What you can't see is that they were all sitting on my stomach while I was laying down on the ground.




Jen and I spent the afternoon meeting with our doctors at Johns Hopkins. We are very grateful to say that the MIBG test came back as negative!!! This is really great news that we are receiving as a gift from the Lord! We are grateful! As of now, it looks like they got all the cancer out in the surgery, and that there are no remaining cancerous areas in her body! Although cancer returning will remain a low risk for years to come (which is a slight possibility for neuroblastoma), cancer is now on the back burner...

On the front burner now is her OMA syndrome. OMA stands for Opsoclonus (abnormal eye movement) -myoclonus (muscle twitching)-ataxia (abnormal motor coordination) syndrome. Of the 600 kids diagnosed annually with neuroblastoma , only 2%-4% have OMA. I say that because the treatment ahead of us is largely new in its usage because there are simply not a lot of kids that have OMA.

Sarah seems to have leveled off in her improvements, so treatment on the OMA is needed. At this point, being 4 weeks after surgery, this means that her immune system needs to be “reset” because it is still attacking her brain. The standard protocol for treatment is a mixture of chemo (cyclophosphamide) and steroids (Prednisone). The chemo would be considered a “low dose” of chemo, and the steroids would be considered a “high dose". She will orally take steroids at home daily, and we’ll go to Hopkins for chemo treatments. She will receive those injections once a month for 6 months, with one injection lasting 28 days. Both of these treatments will suppress her immune system completely, and the goal will be to “reboot” her immune system...like a computer would need to be rebooted (our doctor's illustration, not ours!!). The chemo will certainly take its toll on her body, but we are praying that the Lord will protect her from the more serious effects of chemo. If this kind of chemo doesn’t work to improve her OMA, then they will increase the dosage and/or try different kinds of chemo.

Jen and I are doing very well with this news. We are rejoicing in the fact that the cancer has not spread. We are rejoicing in the grace of God to us in the form of medicine. We are rejoicing in the incredible care that we are receiving at JHU. We are rejoicing because our God is bigger than cancer, chemo, and steroids...and he can chose any means he wants to, to heal Sarah. If he chooses to use the next 6 months to heal her, we will take that as the incredible kindness of our Lord.