[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

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 kyle.matthews@mac.com 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

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 (http://www.hopeforgodschildren.com) 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…

Things are going alright with radiation – there are some minor side effects which are immediate, like a darkening of the skin where he gets radiated (hey, people PAY for that normally), and throwing up sometimes. His appetite is going down, and this morning he actually had to have his treatment cancelled for the day and get platelets instead – radiation messes with your body. Treatment should resume in the morning or on Thursday, with an extra day or two tacked on the end to make up.

We’re going ahead with the 3F8 treatment (I’m pretty sure we always were, I was just trying to stress the severity of it and the difficulty of the decisions we keep getting handed…) which will start roughly 3 weeks after the radiation is finished. We will have 5-6 treatments most likely, which are a week in the hospital (well, 4-6 days), then 3 weeks home. Once that’s over we’re pretty much done with intense treatment.

The numbers for neuroblastoma are encouraging and discouraging at the same time. They are continually on the rise, although current survival rates without future “events” (read: getting cancer again, whether neuroblastoma or a secondary cancer like leukemia – which can be CAUSED by the treatment for neuroblastoma) is 55-60%.

This obviously still gives us a cup more full than empty, but it can be a number that wears on you. Leukemia (firsthand, not as a secondary cancer) has a 96% survival rate without event, for instance. It’s a strange struggle, the thoughts and faith involved with this. On one hand, my faith in God to heal and protect my sons is stronger than ever – but my definition of it is changing. People often say to me – God always heals! Which I believe – but I also know that it’s not always the way you or I picture it. Robyn and I know that full well after the last 9 months. We have gained and lost more since October than in our entire lives. I find it hard to imagine how Abraham made the decision to obey God when he asked him to give Issac to Him. There’s a smallness you feel in these moments. Despite any talent, achievement, knowledge, dollar, or connection I may have – the lives of my family and children are not in my hands. Robyn’s and mine tears and prayer may translate to an eternal life for our sons, but it doesn’t guarantee this one. It’s a deep realization – hard to feel, but rings true. I know in my heart the former is the obvious greater than… but whew, that’s some chewy thought.

If you want to get a sense of God’s hugeness and our smallness, read Job 38-41. It’s an intense depiction of the vastness of God and our inability to even comprehend the fullness of His plans for us. God lays out an awesome description of Himself for pages and pages, telling Job he cannot begin to grasp the reason for some things, and this doesn’t negate God’s unchanging character and continuing promises. Talk about instilling awe.

Here’s a bit of it:
34″Can you lift up your voice to the clouds,
So that an (abundance of water will cover you?
35″Can you send forth lightnings that they may go
And say to you, ‘Here we are’?
36″Who has put wisdom in the innermost being
Or given understanding to the mind?
37″Who can count the clouds by wisdom,
Or tip the water jars of the heavens,
38When the dust hardens into a mass
And the clods stick together?
39″Can you hunt the prey for the lion,
Or satisfy the appetite of the young lions,
40When they crouch in their dens
And lie in wait in their lair?
41″Who prepares for the raven its nourishment
When its young cry to God
And wander about without food?

That’s just some of the literally chapters of it. My point being this – faith in God is not being sure He will grant wishes. Faith in God is being confident in who He is. Understanding the promises given from Him to us. We forget sometimes in order for God to deliver Daniel from the lions, Daniel had to be in a pit of lions. 😉 In order for God to save ALL His sons and daughters, He had to lose His ONLY son.

Charley and Ezra are both doing very well – each is responding to treatments better than doctors expected, and the future looks good for both of them. Robyn is at All Children’s right now spending some time with Charley, and she just texted me he is completely off his vapotherm (a strong oxygen source), and is down to very minimal basic oxygen being given to him. He should be 100% breathing without support soon. He is learning to eat and tearing through milk like a [insert something that tears through milk very fast]. We’re tired still, and we will be for a while. Our faith is becoming much less based on what God /does/ for us, and much heavier on who He /is/.

This morning Ezra started his radiation therapy. The first of 20 early morning radiation sessions under anesthesia went alright – he puked up all his bottle the minute he finished it once we were home, but was able to hold down oatmeal. It’s going to be a long month…

We spoke with Dr. Wynn, one of our oncologists at St Joseph’s this morning about 3F8, the treatment option we’ve been mentioning throughout this adventure. If you’re interested in reading about it – you should check out this article: http://www.mskcc.org/mskcc/html/3215.cfm. Here’s some interesting info from that doc:

“A person’s immune system makes antibodies to attack germs such as bacteria or viruses, but it will not attack neuroblastoma because the tumor is part of our own bodies. An antibody that attaches to neuroblastoma can be made in a laboratory and then given intravenously to a patient. This antibody will circulate in the bloodstream until it finds and attaches to a neuroblastoma cell. And then the patient’s own immune system will attack and kill that neuroblastoma cell…

When 3F8 is injected into the bloodstream, it travels through the body until it attaches to the marker GD2 that is present on all neuroblastoma cells. The attachment of 3F8 to a neuroblastoma cell signals the patient’s own immune system (e.g. the white blood cells) to treat neuroblastoma cells as foreign. In other words, the 3F8 directs the patient’s immune system, which ordinarily acts only to control infections, to attack neuroblastoma cells and kill them. The treatment is effective even when a patient’s immune system has been weakened by chemotherapy treatments because chemotherapy does not affect the part of the immune system that responds to 3F8 antibodies. Over time, as the body’s immune system becomes stronger, 3F8 treatments may help the body learn to fight tumors on its own.

Pain is the main side effect. All patients have pain. The second most common side effect is rash (hives with itching), which is an allergic reaction. Pain can lead to a fast pulse (rapid heart rate) and sometimes causes high blood pressure for a short period. Less-common side effects include fever, vomiting, and diarrhea.”

The treatment is very hard on a kid. It’d be five separate 4-5 day inpatient (admitted to the hospital) sessions, the first of which would begin 10-14 days from today. We’re most likely going to do the treatment, but it is a hard decision. Patients who get 3F8 are 20% less likely to have their neuroblastoma recur, which is a very large number in the high-risk stage 4 cases like Ezra is. But 3F8 is also painful, dangerous, and has hard side effects which can occur (short term, not long). These include anaphylactic shock, extremely low blood pressure, and a few others. It’s a few days shorter than the transplant was, and spread out which is easier on a schedule, but it’s a harder treatment.

Basically – though we’re nearing a sunrise in the evening of this ordeal, the warmth is still only a promise, not a reality. We’re like Rocky – he has a strong belief tomorrow he’ll be the victor and able to relax with Adrian, but he also knows he’s going to get the crap beat out of him tonight. That’s how we feel.

We continue to find rest in our faith and know God will work all this together for good. We know He’s holding the situation secure and we know this will be a memory – and not a constant – sometime here in the future. We used the slight break we had when we came home from stem cell transplant to grab some much needed “normal life,” and it’s a little hard remembering now it’s not the norm yet – there’s still rough patches ahead.

We met with the radiologist today to get the next part of Ezra’s treatment scheduled.

Radiation should be starting at 42 days after transplant – which is today. So we’re going in tomorrow to get him measured and start the radiation. It’s very precise positioning – it is multiple direct rays which hit specific areas in Ezra’s body (where the tumor was removed). Since the tumor was so close to the spine, Ezra will have to get anesthesia for every treatment of radiation. Oh – and it’ll be twenty sessions. Which start at 7am, Monday – Friday. So a month from now we should be finished with radiation. And i was jussssst starting to get into being home…

Because he needs anesthesia each time, the appointments will be longer than for an adult. Adults go in, sit down, and head out to work after. Its extremely important the patient is super still, so kids wind up having 4 hour appointments instead – get anesthesia, get radiation, spend an hour or two waking up from it.

He normally wakes up at 930 or 10am, so he’ll be a bit whiny during the day from the lack of sleep – hopefully the sedation will give him some rest. He cant have breakfast until after every appointment, since you cant eat before getting anasthesia.

Waking up at 530 for the next month!

After the radiation, the drs wait 2-4 weeks then do scans, and THOSE scans will determine if he’s announced in remission or not. We’re hoping that will be before Ezra’s birthday on August 31st – which may or may not happen. It won’t be long after if not though. The next step would be 3F8, a new(er) treatment called a monoclonal antibody which will significantly lessen his chance of relapse. We’re not sure on the treatment schedule on that, but it looks like 6 treatments which are a few days each. That will be the last of his major treatment.

Charley is doing awesome – rocking along, needing less and less oxygen, and weighs 8 pounds 12 oz now!!!! Everything is looking good now so he’ll prob be home in the next 4-6 weeks. Gonna have two kids home soon!

Haven’t updated for a bit, figured I’d give you guys a rundown of where we’re at now.

We’ve been home a little over a week now, and Ezra is settling in. He’s still not eating as much as before we went in, and has to get fluids every night overnight via a pump which goes in his bed with him. He also isn’t drinking a ton, which means we have to keep those fluids running until he gets his drinking up.

His attitude is great though, a little more clingy still, but almost back to normal! you can tell he’s still weak from the month of being in the hospital – he plays normal, but stops more often during his play to sit down. This will get back to normal as his appetite picks up and his muscles just normally build back up after a month of no use.

Charley is doing GREAT. He took out his own breathing tube a few days back, and is breathing well without it in now. He still needs oxygen, but no longer needs support with the physical aspect of breathing. They’re working on getting his oxygen needs down, and to teach him to eat – in the next 4-6 weeks we will most likely be able to take him home – possibly on oxygen, hopefully not. bringing a preemie as young as him home on oxygen is fairly common, though.

We get to see Charley a lot, since Ezra is still having labs done 3x a week at All Children’s. It’s a long drive but good to see Charley. It’s tough to find time to get work done, be at the hospital, keep the house running, and spend any time with Robyn at all – but we’re managing. By the time our head’s hit the pillows we usually feel like our entire body is screaming at us to rest… and we’ll do it again the next day.

Anyway… basically extremely busy, more tired than ever, but things are on an upwards swing and it feels good.

This morning the doctors came in and pronounced Ezra ready to go home.

He’s been getting a blood transfusion the last couple hours to get his hemoglobin levels a bit up, as they’d dropped. Then he’ll have some platelets running for about an hour to up those numbers so we’ll be ok til clinic on Monday. Those should finish out about 5:30 or so, and then… we’re free!!! He still needs labs done 3x a week the first few weeks – the chemo was so heavy it will be messing with his counts for months still. But as of 5:30 today… we’ll be on our way home.

Robyn is packing stuff up as I’m writing this (don’t worry, I’ll help as soon as I’m done here); we’re loading up a cart with a month’s worth of hospital life debris to bring on down to the car and get loaded up. Tonight there will be no vitals at midnight, none at 4 am, and none at 8 am. Sleep. Uninterrupted sleep.

I’m looking forward to moving this couch over here and seeing how much stuff Ezra has dropped behind it in the past 30 days. It’s been a lot.

He’s still at high risk for infection, he’s still a little weak, and he’s still pretty finicky… little things set him off easier at the moment. Once he’s been home a while that will change back, but right now he’s pretty much over living in a hospital. I mean, so am I. We’ll be battening down the hatches and laying low and hanging back and all those other slang and thesaurus references for not leaving the house much or bringing much else in.

We’ll have a pump in his room which we’ll still need to hook up each night to get him fluids and such. This will last 2-3 weeks. The chemo he was given is really toxic to the kidneys, and the kid only has one these days anyway. We keep a high amount of liquid going in to make sure it’s all being cleaned out well. That means we are trying to get him to drink as much as possible all day long (and he doesn’t really drink much anyway), and then the pump at night to supplement. Even with all that he’ll still need to be at the hospital 3-4 days per week for hours at a time to check his numbers and adjust what he’s got in him. “home” is not /exactly/ what everyone may picture the situation as – but it sure does beat this past month!

The nurses on 7 South at All Children’s Hospital deserve a great big “THANKS YOU DID GREAT!” They’ve been stellar folks – considerate, intelligent, and consistent. From the Matthews – thanks, all.

Charley is in the same place as last time… the steroids are working well. He needs less and less from the breathing machine. This coming Monday is actually his due date – and this past Tuesday was his 3 month birthday. How crazy is that?

See you guys around…

Ezra is doing great.

We had a scare there a little over a week ago. Ezra was retaining fluid and producing more so much that he was nearly unable to move, looked 9 months pregnant, and was in constant pain and having a lot of trouble breathing. I had mentioned this before, but after the last update it got to the point where Ezra actually had to be moved to the PICU (pediatric intensive care unit) from the room (literally WHILE I was in the air to San Francisco – what rough timing!), and hooked up to specialized oxygen machines to get him the air he needed. He was in the PICU 6 days, 3 of which I was there, and then the fluid retention finally went down and his breathing righted. There were points in there where his skin was so stretched he had spider veins all over – very scary, but the resolution wound up being spot on with no lasting effects, so amen to that.

He is now back to walking about, playing, talking, and being his flirtatious self with all the nurses. The drs say he can head home Wednesday at the earliest, Friday at the latest, barring anything crazy, which no one sees as a valid possibility. His eating is still very low, but he’s on IV nutrition too, which affects that. The chemo also has a months long effect on his taste buds, so he’ll find things he used to like bad tasting, and vice versa… for a while. The good news there is, they expect this from kids his age, and if he needs to go home with those IV nutritional supplements, he totally can. We have given Ezra nutrition via a nightly pump before, and may very well wind up doing the same now. Basically when he goes to bed at night at home, we’d hook up a pump to his line and h ang a bag, letting it run all night until he wakes up in the morning. Nothing like feeding your baby, eh?

So… basically… Ezra has nearly beat cancer. We still have a few after-care things to do over the next year, but he’ll most likely get scans to verify official remission here in the next month or so, maybe a little longer. He’s successfully gone through 6 rounds of chemo, 2 surgeries, hundreds of hours of labs, tubes in his chest, nose, and central line, stem cell transplant, and more. He’s got minor radiation, scans, labs, monoclonal antibodies (which are very painful, both to try to pronounce and to experience), and more ahead of him. But he’s nearly cancer-free, less than 9 months later. Amen.

Charley is doing well also. They started him on steroids this morning to prepare him for extubation (removing the breathing tube from him) in the next 2 weeks or so. The steroids give his lungs a boost of development, and help reduce any swelling in the throat which would happen from the tube being there so long. He still has a long road – 2-3 months left in the hospital minimum, but he’s doing good on progress.

Whew. I’m ready to be home. I forget what it looks like. Someone said we have a pool? Sounds nice in this heat….

Oh, side note – my trip to San Fran was good. I was there less than 48 hours, really only one day. We covered the new iPhone launch live, got a ton of traffic, and I’m trying to pre order one of them now… but Apple and AT&T are both, of course, down. I know you care. 😉