Sunday, September 8, 2013

MEET EZRA: 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!

6 comments:

Unknown said...


i just can not even fathom the worry, the stress, the truly overwhelmed sense you must have during these past few months. i just want to tell you how much i admire the loving strength and faith that guides your lives. you are truly inspirational to me. always have been, always will be. i know we've said it, but i'll say it again, we are here for you. whatever you need, whenever you need it. our loving hearts are with you every step of the way. i love you all so much it makes my heart hurt.

Kasey Krawiec said...

Dear Ezra, I prayed this over my Ethan and will pray it over you too... Psalm 121:5-8

5.The Lord watches over you — the Lord is your shade at your right hand;
6. the sun will not harm you by day, nor the moon by night.
7. The Lord will keep you from all harm — he will watch over your life;
8. the Lord will watch over your coming and going both now and forevermore.

Farid Sardar said...

Elisabet/Josh: Thank you so much for letting me in your blog. We are shock to hear about Ezra. Its at least good he diagnosed early and you started his treatment accordingly. I know you have to go long way! Please don't hesitate to call me @541-207-2616 or knock the door if you need any help any time. Ezra would be in my everyday's prayer. God bless Ezra and your family.
Farid

Jennifer Wiser said...

Dear Ezra,

I'm Jennifer (mom to Alex and friend of Ethan's Mom Kasey) - we are praying for God's mighty hand of protection and healing to overcome your body -- we saw miracles in our sweet boys, and are praying and believing God's grace will sustain and uplift you and that you too are healed of JMML! Hang in there little buddy, and sweet Momma, daddy and brother - God is watching over you and loves you so much more than we could ever imagine. I'm praying peace for you all!! Hugs from all the way in Michigan!

Elisabeth said...

Thank you all for stopping by and reading Ezra's story. We appreciate each and every prayer! (And love to see prayers coming from all over the country too!)

Anonymous said...

I will be praying for you all. Be strong and know that God is watching over you and already has a plan to help you through this. I will keep watching this site and please post of you need more people as potential donors.