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. 😉

Alllll the way to day 19 here in the hospital.

The last 4-5 days have been the hardest for Ezra. As the white blood cells begin to come back, the entire body is already inflamed inside from the chemo going through there. The white blood cells all come in and go throughout the body to fight, and a by-product of this is a LOT of extra fluid in the body. His belly is huge now, which is a normal milestone in this treatment, but is causing him quite a bit of pain. He literally looks like he’s 9 months pregnant – stomach bulging, skin tight. His breathing is rapid and shallow because his belly is pressing up against his lungs, making it difficult to breathe. We don’t move him much, because even turning him hurts a lot.

The good news is this is all because his white blood cell counts ARE in fact coming back (which is one of the major points in this whole thing), so within the next 2-3 days the swelling should go down and his breathing will begin to come back to normal, and he will have an immune system working and rebuilding again.

Of course, Robyn is a /little/ frustrated with me since I’m actually leaving for San Francisco in about 2 hours. 😉 I’ll be there 48 hours on business, to provide live coverage for my site readers of Apple’s event where they’ll be launching the new iPhone. modmyi.com/live Monday at 10AM PST – you can watch too. 😉 I’ll be back Tuesday night, so Robyn is a trooper on her own the next couple days… love you, Robyn!

So… Ezra is FEELING worse, but doing better. If that makes sense…

Well, we’re at day 11 now, nearly a week after the end of the chemo, and a couple days after transplant. 2-3 weeks to go.

The drs say today through Tuesday or so are usually the hardest on a patient, and Ezra is apparently right on schedule. Last night he was moaning and tossing and turning a lot, and wound up getting morphine a few times. By this morning, he was low on nearly all his chemistry counts (sodium, electrolytes, etc), and has been getting lots of those via IV all day long to compensate. He’s been on a morphine drip since the afternoon which has kept him mostly asleep all day and he’ll most likely continue to sleep through the weekend. His fever is currently 104 (40 Celsius, which is what everything in the hospital is measured in), and he’s on antibiotics as well to help fight that.

He still can’t eat, and isn’t drinking either right now. His mouth and throat are hurting from the mouth sores. The IV is getting him TPN (a solution with a lot of nutrition), lipids (fat), and keeping him hydrated. There’s actually 7 different pumps on his IV pole all delivering stuff into his IV, and they still have to give things via syringe orally sometimes because there are no free pumps on the pole.

We’ve got him laid out on the couch with us, and it’s been oddly peaceful here. Everything Ezra is experiencing right now is normal for this point in a stem cell transplant stay. So while it sucks to see him hurting and so out of it, we know it’s necessary and will come to a good result. We’ve got him laid out on the couch with us, and have snugged up the bedchair thing against the couch, which is pulled out – creating some sort of crippled quasi-queen bed monstrosity which the three of us are spending our weekend on. We’re surrounded by pumps, monitors, power cords, beeping noise, glowing lights — and tubes draped across the whole of it connecting Ezra to the equipment. Nurses are in every hour or two now. They change every time it’s 7 o’clock, and I find myself not knowing any by name, but remembering faces and demeanors. I’m always surprised when it’s 7 again, since it seems to come out of the blue – time is weird here.

Occasionally we leave the hospital one at a time, and it’s nice. I took a walk today to Starbucks, which my phone said was close.. and it was, but it wound up being in the lobby of a Hilton, closed at 5 (it was 6), and so I wandered to some [better] little privately-owned coffee place my phone showed me, and had a mocha. St Pete is a nice little walkable town. Last night Robyn went over to the local tea place and had something to drink while some live music played. Good little break, right on the water.

We met with Charley’s neonatologist who was ending her 3 week rotation in the unit, and she let us know Charley is doing well, but won’t be able to come home for a minimum of 2-3 months, possibly longer. His main areas of focus are the brain, the lungs, and the eyes. Charley is developing well everywhere, and the shunt in now is finally working how they’d like – his head is noticeably less alien and more baby. 🙂 They still won’t know if this will cause any mental development issues until well-after we get him home most likely. His lungs are bad, as they have been, and the focus is trying now to finally wean him off the venitlator – which they think they’ll be able to do in 2-3 weeks. His lungs will be ok, but they need time.

One of the issues of being on oxygen so long while so premature is it affects the way the eyes develop. At this stage in a fetus, the blood vessels that attach the retina to the clear gel at the front of the eye are stil developing. He’s obvioulsy not a fetus now, and has (necessarily) been on oxygen since he was born since his lungs don’t work fully yet. An excess of oxygen can cause these blood vesels from the retina to branch out in incorrect directions, which left untreated could cause blindness. This is, however, relatively easily treated with laser surgery, so they are keeping an eye on him (no pun intended… or was it). He already is a level 1-2, but they say there’s no need for any corrective surgery til het gets well past that. Either way, it shouldn’t be a lasting issue – but is a focus for now.

Thank you guys all so much for your continued prayers, encouragement, messages, texts, giving, and the occasional delivered pizza or hummus and cheese sandwiches. We’re encapsuled in a world we didn’t even realize existed a year ago, and the support we’ve gotten from all of you is flat-out beautiful. When we are on the other side of this, we’re confident we’ll be involved quite heavily in doing the same for folks in similar positions.

I work online for a living, and live in a constant world of geekery. Although I’m known by my real name on the net these days, I used to have a “screen name” of poetic_folly, which I came up with as a sappy philiosophilcal 14 year old in Seattle. It described in two words my views on life, and still does for me. Life is full of mistakes and crap, both big and small, and it’s the experiencing of these, the coming out on the other side, the helping, love, and friendship you find through them that makes life beautiful. We fall down, we get up. Everyone *knows* this stuff happens, but when you SEE it and LIVE it, it’s incredible to feel the depth of emotion and the strength of connection experienced through these events. Both Robyn and I’s thoughts and views have been changed on so many levels throughout all this – priorities, compassions, reliance on Christ, attentiveness to each other, and even who God is. The ferocity of a warrior is often hidden off the battlefield; the gentleness of a healer is tough to notice when you’re too busy to need it.

I’m rambling. Chat at y’all in a bit…