[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.


Ezra’s 2nd Birthday Party – You’re Invited

Ezra will be turning 2 at the end of the month. 1 year ago – pre-cancer, pre-twins – we had a bunch of people over for his 1st birthday slash house-warming party as we moved into our (first!) house. Now, a year later, much has changed for us, including this house becoming our home. We’d like to do a big bash to mark his 2nd birthday, as well as his “no evidence of disease” declaration (neuroblastoma patients don’t get an official “remission” status – the doctors call “no evidence of disease.”) We’re inviting everyone over this Sunday – August the 29th (his birthday is the 31st, but it turns out people have jobs and stuff 😀 ) at 4pm for a grill out, pool party, and celebration of everything this past year has been. Despite the harsh times, there have been deep moments of joy, an intense strengthening of Robyn and I’s relationship, and the addition of Charley to our little family.

You’re all invited – please shoot me an email at to confirm you’re coming (so we know how much food and drink to get). We’ll have the grill hot and ready, hot dogs, hamburgers, condiments, chips, salsa, drinks, and the pool will be ready for anyone who’d like to jump in. The kids love the diving board. I figure 4 pm will give everyone a chance to do their church things, let their kids sleep, and be ready to come hang out.

Ezra has gotten SO many toys over the past year from all our admittances and well-wishers – we’re flush with stuff. In fact, we’ll probably be having a big garage sale the next weekend to minimize our items gathered over the years. Please don’t bring any gifts – just spending time and hanging out, laughs and good times is plenty. We do love cards, as we are scrapbooking this whole year, so if you’d like to do that, awesome. If you really want to do something to help out kids with medical issues – find a blood bank and give blood or platelets! No need to earmark them for Ezra or Charley – that doesn’t really do much. Both Ezra and Charley have got so much platelets and blood over these past months, it’s amazing to think of.

I’ll run through the medical side of this update quick. Ezra has scans this week to cement his approval for the antibody study which he’ll be doing next, and if all goes well there we’ll be starting the antibody Sept 10th, and do 5 rounds of a week in the hospital, 3 weeks at home. Then we’re pretty much done with treatment! Charley had a minor setback and got a bladder infection. He had to have the tube put back in his throat for breathing, but they are removing it tomorrow, and simple medicine can fix the infection. He’s already halfway through his 10 day course. He will have surgery to have the G tube put in his stomach next week, and will be home within a month now. He’ll be over 6 months old by then.

We hope to see you Sunday, please remember to RSVP to my email, and either way – see y’all around! If you can’t come but would like to send a card, you can do that as well. For everyone – our address is:

The Matthews Family
15511 Walden Ave
Tampa, FL 33618

radiation is done

Hello you folks.

It’s been a little bit again – time to update. We finished radiation this Wednesday (4 days ago). Ezra is still throwing up once or twice a day, which should go away within the next day or two. He’s starting to get his appetite back, but the throwing up isn’t helping him a ton – he’s pretty thin. The great news is, we’ve got the next 3-4 weeks pretty much off from hospitals for him – just labs once or twice a week.

After the 3-4 weeks he’ll have another round of scans, then we’ll do 5 or 6 rounds of the 3F8 we’ve been chatting about – a week in the hospital, 3 weeks at home.

Charley is getting closer to being able to come home. Today is his 5 month birthday. He’s over 11lb now, and a little fatty. 😀 We’re trying to keep a schedule set up where we’re with him a few hours at least every other day (even in Ezra’s month off we’re in hospitals 4-5 days a week!).

There’s still a couple issues Charley is working on. He is on the minimum amount of oxygen they can give, but he’s still needing it to breathe. He also is working on taking bottles, but has 8 feedings a day, and is only able to take about 4 from a bottle right now (the other 4 being from a tube, which runs down his nose, throat, and into his stomach). The ones he IS taking he’s not able yet to take a full feed usually, although he has once or twice. The drs want to keep him in the hospital another 2-3 weeks to see if that improves. Most likely though, we will be bringing him home both on oxygen and with a tube.

If that’s the case, he would have an oxygen tank we cart around with him, along with a nose canal which will be giving him the oxygen. This is the same thing he has now. It’s POSSIBLE to have this up to a year, although we’re obviously hoping for much less!

The tube for feeding is called a g tube, and would actually be surgically implanted in his stomach. It’d be accessed via a button (yah, a button) on his stomach where we could hook up the tube to the pump for feedings. He’d still be able to wear normal shirts and such. This also would be something that can last up to a year but we hope would be less. He is eating, which is a good sign – just not enough at the moment. Charley had a hearing test done this weekend and failed in one side. This is inconclusive, but has given them reason to do a much more detailed hearing test this coming week to see if it’s anything permanent. Please pray it’s not.

I’ll let you guys know as things progress! Most likely you’ll be hearing from us next saying Charley is home. 😀

Oh – another cool thing, a charity called Hope for God’s Children ( has chosen us to be their “late September beneficiary.” In late September (Sept 23 – Oct 7) they’ll be hosting a variety of auctions of artistic creations (donated by the design boutique community) of which we’ll receive all the benefits to help with life expenses. Thanks, Hope for God’s Children. We’re actually friends with some of their recent beneficiaries – a cool ministry.

Ezra’s birthday is August 31st. We’re thinking about putting together a big event at our house, as he’ll be turning 2 and also is officially in “after-care” – no evidence of disease. It’s been an intense year, and while it may not be over, it’s now into maintenance and after-care instead of disease treatment. I’ll send out an update here as we get more info, but we’re hoping to see a lot of folks there!

Until next time…