Sunday, September 8, 2013
Ezra's Story: At Home Chemo & Searching For a Match
This past week was a long, slow week as we waited for more test results. Here's what we know: Judah is not a match for his brother. Very bittersweet news. On the one hand we are devastated for Ezra's sake (because that would have been the best, closest, quickest match)...and on the other hand we are relieved for Judah's sake. We're not quite sure how we could have explained to our band-aid-fearing, ice-pack-hating 3-year-old that he would have to get poked with needles and go through all these traumatic things in order to save his baby brother's life...because that's just not something you could possibly explain to a 3-year-old. And we just can't imagine BOTH our babies in pain...one is hard enough. The good news is that preliminary searches have already found some 9/10 (marrow) and 5/6 (cord blood) matches in the donor registry, but we will have to wait for further screening on those.
The other test results we are awaiting are a little more complicated to explain. Basically, there are three categories used to diagnose JMML. Ezra fulfills the diagnostic criteria for categories one and three, but we are still waiting for results from category two (although, the JMML diagnosis can be made, and has been made for Ezra regardless of those results). Results from category two (essentially, a group of genetic mutations commonly found in patients with JMML) could change how we proceed with treatment/transplant...so we have a lot riding on those results. We hope to receive them this week.
In the meantime, Ezra is hardly even 12 lbs and hasn't gained any weight or length for close to two months. His spleen is so enlarged, his stomach is crowded and unable to get the amount of food he needs to grow. So, while we are awaiting a date to have a feeding tube surgically placed (called a G-J tube), we have started chemo treatments at home with the goal of getting Ezra's spleen to shrink and make more room for his stomach. So far Ezra has done as well as can be expected taking his chemo medicines, but it's hard to say how intense the side-effects will be once he's been on them for a longer period of time.
We are continually amazed and humbled by everyone's generosity and thoughtfulness while our family endures this incredibly trying time...please know how very thankful we are. We ask for your continued prayers as we await more test results, for the pending surgery and transplant, and for Ezra to continue to do well with his at home chemo. This is by far the hardest trial we have ever endured, but by the grace of God, we keep putting one foot in front of the other each day, and we trust that he will continue to provide the strength and courage we need going forward. Thank you so much for your love and support and for helping to keep us encouraged.
PS - A special thanks to Melissa Ann Photography (photo above) for blessing us with a photo shoot earlier this week. We are so grateful for the opportunity to have our family photographs taken while Ezra is still healthy enough to be at home. Thank you Melissa!
PPS - Because there have been some questions about the Caring Bridge site set up for us, let me answer them here. 1) The intention of the Caring Bridge site is mainly for the "Support Planner" - I will write Ezra updates here on the family blog (but maybe I can start linking them from the Caring Bridge site as well). 2) Donations made to Caring Bridge do not go to Ezra or our family directly, they are to keep the Caring Bridge service free and available to anyone who wants to use it. If you are wishing to make a donation to our family, the “Ezra Parker Fund” has been set up at OSU Federal Credit Union. You can stop by any branch location to make a donation or mail a check to: OSU Federal Credit Union - PO Box 306 - Corvallis, OR 97339