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[this update written by Robyn]

Two years ago tonight, I went into labor with my first son. I knew he would be my little life changer, although I wasn’t expecting all this at the time. Over the past 10 months he’s been battling neuroblastoma like a champion, putting up with a huge amount of tough situations and hard times. He’s the kind of kid who makes everyone smile, and he’s made all this much easier on Kyle and I – just seeing his smile, or hearing his voice, or him grabbing our hand… it makes a huge difference in days that can seem hard to find a reason for.

Thank you so much to everyone who came out to the party yesterday – we packed the house and we were so happy to see you all. We have an amazing group of friends, we really love you guys. Over 120 of you stopped by to enjoy the pool, the grill, the company, and Mandy’s vegetarian chili! Ezra had a great day as well, so thanks again to everyone.

Neuroblastoma is a tricky cancer – it has a high reoccurrence rate, so high that doctors don’t even give these patients a “remission” status. They call it “no evidence of disease.” He was given that status after the stem cell transplant.

We went in today for weekly labs, and Dr Rossbach had a meeting with us to go over the results from some of the scans from last week which we hadn’t heard results on. Specifically, Ezra’s bone marrow, which showed evidence of neuroblastoma again. One side was clear, but the other bone marrow aspiration showed 10-20% neuroblastoma cells. It’s a big setback, and we’re not sure what to do now. It’s hard to term this, it could be called relapse, it could be called “progressive disease”. The difficult part of this is the neuroblastoma that’s still here has most likely been there the whole time but hiding somewhere, and is now coming out after all this treatment – meaning it’s much more difficult to get rid of. It’s a very serious setback.

We’ll be getting a call from St Joes in the morning after the oncologists go over some options – most likely we’ll go in to chemo Wednesday, which will be a 2 week stay in the hospital, followed by 2 weeks at home. We’ll repeat this twice total and then check his marrow again. We’re hoping to be able to do the chemo at All Children’s since Charley is still over there, but we’ll have to see.

Please keep praying – the prognosis on neuroblastoma is one of the lower in childhood cancers already, and once you have progressive disease it’s even lower. It’s scary. We know God still is God, and we’re praying hard. Because of this happening, we can’t do the antibody treatment (at least not in Tampa) that we were thinking was next. We’ll do the chemo, and then we will probably have to go to New York for a few months for treatment afterwards. There’s a great hospital there called Memorial Sloan which is the top neuroblastoma hospital in the US. They have a lot of experimental treatments and studies running which show a lot of success. Once a neuroblastoma patient has relapsed there’s actually no protocol even in place – it’s all “well this has worked alright” or “we’ve seen good things with this.”

Tomorrow (Tuesday, the 31st of August) is Ezra’s 2nd birthday. We’ll take him to the zoo I think. Today is yet another life-changing day.

-Robyn

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  1. To see and hear about the events that raise funds to continue Ezra’s fight will forever be changing lives. What an AWESOME purpose he had in his 800 days here! To continue that purpose even when you aren’t here, AMAZING! Lives continue to be changed because of your family story. We will continue to pray for amazing research for a cure for this horrible cancer. God bless!