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…

The transplant happened a couple hours ago, and went well. It’s an interesting procedure. His stem cells were harvested way back after the 3rd round of chemo (http://www.carepages.com/carepages/EzraMatthews/updates/2469286), and have been being stored at Moffitt this whole time (the only place in the area that can store stem cells). The doctors ordered them delivered this morning, and the truck left Moffitt at 9am. Enough cells were harvested from Ezra to do TWO rounds of stem cell (which pretty much never happens, but pretty much isn’t never – better safe than sorry), and half that (a full transplant) was trucked over today.

It comes frozen delivered to the blood bank at All Childrens, and injecting must begin into Ezra’s central line within minutes of being thawed. There were a total of 150 mls (a little over 5 oz, a little under 2/3 of a can of Coke) injected into him. It comes in three separate 50cc syringes, which each take about 20-30 minutes to push into him. One nurse stands and slowly pushes the stem cells in through the syringe, stopping after every few ccs to check his heart rate, blood pressure, temperature, etc. Another watches the vitals constantly, while the dr stands and watches as well. I’ve uploaded a photo to the photo section here of the cells being injected….

Because the stem cells must start injection so quickly after being thawed, the dr walks across the street to the blood bank after 20 minutes to get the second syringe of stem cells while the first is almost done, and then again in 20 more minutes then the second syringe is almost empty. The entire process took a little over 90 minutes.

During the process, because they’re so cold and the solution is thick, his heart rate dropped considerably throughout, and they’d have to pause, wait a minute or two for it to go back up, then push more cells in. Heart rate was ranging from 150 all the way down to low 40s. Average for him is 110. They did an EKG which showed normal, as well as gave him lasix to help him pee out much of the liquid to help keep his blood pressure normal.

The whole thing stinks. Literally. The solution the stem cells are stored and delivered in to keep them at their best reeks like bad fish combined with old garlic combined with cream corn (although I kinda like cream corn – just not in that combination ;), and you can immediately smell it on his breath (weird, huh?) once they start pushing the first syringe. The smell fills the room pretty quick, and last a couple days they say. We’ve got oranges cut up and placed all over the room to attempt to attack the smell… but now it just smells like bad fish combined with old garlic combined with cream corn combined with oranges. ha.

His condition will most likely get worse over the next 4-6 days, and then improve as the stem cells continue to build up the white blood cell count to it’s normal state. At the moment, it’s effectively zero. We’re seeing more mouth sores now, and he has not eaten at all today, or drank anything – but that’s alright since he’s on IV nutrition and fluids. Now, we basically bunker down and let his body rebuild.

Remission isn’t officially called yet, I think they may want to do a few doses of radiation once we’re home from this before they call it, as well as tests to verify everything after our transplant stay is finished. But it’s close! And of course there’s still some months of after-care which he goes through post-remission.

Home stretch.

It doesn’t feel like day 8. In some ways, things are going very well here. In some, they’re very hard.

Ezra finished his chemo Monday at around 2 in the afternoon. That doesn’t mean the EFFECTS stop though, the worst of the effects from it will be this weekend and Monday. He’s been throwing up during the days the past few days, and just today we started seeing the first of the mouth sores (which are called mouth sores, but actually can go all through the mouth, esophagus, and allllll the way down the GI and out…) as well. He’s been given some drugs which will keep those to a minimum, but they’re a guarantee for every transplant patient, and his started today.

Overall Ezra’s demeanor is good – he’s very low energy and it’s hard for him to eat, but he is still cuddly and talkative. He spends a lot of time laying on the couch (or sitting up as much as possible) watching various Elmo DVDs on Robyn’s laptop. Today they are starting him on TPN, which is nutrients delivered via IV. It’s harder for him to eat now because of the mouth sores – hurts to swallow (or even have food in his mouth), and the chemo effects make him nauseous as well, which makes him not want to eat. He’s on a continuous (as in, the entire 4-6 weeks) IV of a drug called Zofran which cuts down the nausea as best as possible.

Before this stay, he hasn’t had to get any blood or platelets in nearly 4 months (other than for the surgery, which is normal) – and he’s already had to get platelets twice and blood once. The chemo is very intense, and the effects are obvious.

Tomorrow (Thursday) he’ll actually get his stem cells back. It’s less than half an hour to actually get them back in – they simply get a syring full of his stem cells, pop it in a pump, and set it for 30 minutes. They take 3-5 weeks to do their magic and rebuild the immune system. He’ll still continue to get sicker for 4-6 days before he gets to an upswing. The stem cells are weird – they make his breath smell bad, like a sickly garlic. The drs recommend we get a bunch of oranges from room service and slice them and place them around the room to cut the smell. This lasts for 2 days.

Being here is a weird feeling – it’s both extremely relaxing and extremely scary at the same time – a really strange combination. On the one hand, we’re essentially locked in a room with just the 3 of us, spending time together, getting caught up with work, and cuddling with our oldest son. On the other hand, he’s puking and sick, tubes everywhere, and we’re watching him the sickest he’ll ever be. He doesn’t play or laugh much, as he’s just feeling so out of it. We set him by the sink once or twice a day and let him play in the water, which he likes. (I uploaded a picture here – did everyone know there’s pictures here?) It’s all for a good end though. And it’s going by quicker than we’d thought, so that’s good.

Days kind of just melt into each other. There is no night or day in a hospital – there’s vitals every 4 hours (yup, even at midnight and 4 am), and medicines and things at all certain times. So you quickly learn to switch the way you sleep. There’s no such thing as 8-10 hours of sleep – what happens instead is three or four 2-3 hour naps through each 24 hour period. When there is time, we sleep.

Charley is doing well still – over 5 and a half pounds now. He had yet another brain surgery yesterday which installed a lower-pressure shunt. His was draining well, but not at a fast enough rate, so they put in a top which requires less pressure to drain (since his skull isn’t fully developed yet – babies aren’t until a little after they’re born – not enough pressure was being generated), and now it is working beautifully.

The nurses and doctors are great here, and we’re holding up. I’ll keep you all informed… keep praying…

We’ve started the last leg of this race today. We packed up a month’s worth of stuff, drove across the bridge, and checked into All Children’s for our 4-6 week stay for stem cell transplant.

Ezra is doing well – today was basically just prep work. He is getting a few different drugs to help out various things, and to avoid or lessen side effects the chemo can have. Tomorrow he will start the first of 4 days of a very high-dose intense round of chemotherapy drugs. These will completely wipe out his immune system – not weaken, but eliminate.

Next Monday – Wednesday he will rest. Thursday he’ll have the actual stem cell transplant – which in itself is non-climactic; they simply inject them into his line which he already has in his chest. Over the following 3 weeks, those stem cells will go to work rebuilding his immune system, creating new white blood cells, and building back up his bone marrow. Hopefully, by a month from today, we’ll be able to go home, and it looks like we may even be able to take Charley home with us then, too.

The room is nice – we’ve got a big LCD TV on the wall with streaming kids movies and TV, and even the internet on it. There’s another small LCD TV by Robyn and I’s couch/bed. Couchbed. We’ve got a view of downtown St Pete and the water, although a bit of an angle out the window. 😉 There’s a fridge where we put some Red Bull and some other horrible-for-you-but-effective-or-pleasant-tasting drinks. Like CocaCola. It’s a bigger room than any we’ve stayed in during our Tour dé Tampa Hospitals, but I can already tell it will only get smaller as the month wears on.

Please keep praying. This is a huge step in his treatment, and a long haul. It will still be scary, trying, and risky, but we know God still holds us in His hands. Though He never promised a road free of obstacles (or even a road, if I remember – seems it was a path ;), He promises joy from trials, beauty for ashes, the oil of joy for mourning, the garment of praise for the spirit of heaviness; so we’ll be called trees of righteousness, and will glorify Him. If the testing of faith develops perseverance… we’ve got some. This month has seemed a long time coming, and yet I feel it got here quick. Once this is done, Ezra should be officially in remission. Then we still have after-care and various treatments he’ll get, but they are less intense than what he has been doing.

Charley should be coming home mid-June as well. We won’t know if he has any permanent brain damage from the bleeds he had early on until 1-2 years from now. His shunt seems to be working well, and they have decided it’s good where it is. He’s breathing more and more on his own, although he still needs a respirator to help him. His lungs are in bad shape, but are getting better, and the doctors say this is normal, and kids build new lung tissue all the way til they are 2 years old, so he has plenty of time to get them in tip-top shape.

Ezra is sleeping, and they will wake him at 6 to get vitals and start a bunch more pre-chemo drugs running, then begin the chemo around 1-2.

Here we go…

It’s been a couple weeks since I posted here, and during that time Ezra has been recovering from the last round of chemo, and getting scans scans and more scans. We haven’t got the results from all those yet (second to last one finished today), but he is doing really well. Robyn says it’s almost sad when he gets this well, knowing he is soon going to be right back feeling bad from the next round of treatment… we cherish every moment.

Our last scans before the stem cell transplant will be this Wednesday at All Children’s. Because we have to be there so early (8am – and it’s a nice 75 minute drive at that time of the morning!), we decided to make it a mini-vacation. We booked a hotel on the water in St Pete for tomorrow, and will spend the day down there hanging out and having a good time with the three of us, then stay the night overlooking the bay… and All Children’s is only 5 minutes away in the morning. 😀 We’ll be at All Children’s from 8-3 Wednesday.

We go back to All Children’s the 17th, 18th, and 19th for a short injection of a drug called Palifermin which will help reduce the mouth sores stem cell transplant causes (but not eliminate – they’re a guarantee). The 19th we will also be admitted, and on the 20th he will start the chemo that is part of transplant. It’s a 4 day chemo, followed by 3 days of rest. This chemotherapy set of drugs is extremely more difficult on Ezra, and when it is done he will effectively have zero immune system. The specific drugs he’s getting are called Melphalan, Etoposide, and Carboplatin.

There are all sorts of rules about what we can and can’t have during our 4-6 week stay (sorry – no outside food, no flowers, no stuffed animals, and no latex balloons). We will be in a private, filtered room.

After the 3rd day of rest, Ezra will begin the actual transplant. It takes 2-3 weeks minimum for the body’s white blood cell counts to get back up (in essence, the stem cells are rebuilding the immune system – the white blood cells are a major part of this). They say food often tastes bad, and he will be feeling weak, and will be very susceptible to infection. He’ll be on multiple antibiotics throughout the process, and likely get fevers as well – which will need to be monitored to make sure they are quickly addressed.

During the actual transplant (which is the 27th, and will be completed that day), Ezra will have his vitals watched constantly. During the chemo, they will check every 4 hours – whether he’s sleeping or not. There is no such thing as night time in a hospital!

If all goes according to plan, we’ll be admitted the 19th of May, and released to go home somewhere around the 19th of June. It may be closer to the end of June, but we’re praying for a speedy recovery.

By that time, Charley, who is doing good, will probably be ready to come home with us, and we’ll finally all be home. Charley has had his permanent shunt put in, and they are going to do another surgery this week to adjust its position in his head – seems it’s draining correctly, but they’d like it to have a little heavier flow, and will adjust it to do this sometime in the next couple days. By mid June, he’ll be a normal newborn-size, and we’ll finally fill up this house in Northdale.

It’s scary. I’ve always trusted God is a provider, healer, and is aware of my situation and holding my family and I in His hands. While Robyn and I both share this faith and gain strength from it every day, this is still a scary moment in our lives. The “popular” Bible verses are popular for good reason, and I’m reminded of Psalm 23 today:

4 Even though I walk
through the valley of the shadow of death,
I will fear no evil,
for you are with me;
your rod and your staff,
they comfort me.

5 You prepare a table before me
in the presence of my enemies.
You anoint my head with oil;
my cup overflows.

We’re there right now. And I do believe He prepares a table for us in the presence of our enemies. There’s a storm of jacked up stuff surrounding us, and yet God still is putting good things into place for us. And we will fight this crap off with Him.

9 more days… then we’ll see you on the flip side.

Robyn and Ashley went and hung with Charley yesterday for a few hours. He’s 3 pounds 5 oz now! The drs say this is right on track with what he’d be in the womb at this stage of development – meaning he’s doing GREAT. He had the surgery to close the heart murmur on Monday, and it went beautifully. He had another surgery Wednesday to address his shunt – the sub-galean one he had from last week was not working very well. Which we’re completely fine with – this new shunt will be his permanent one, and leaves no visible difference in him. The sub-galean one gave him an alien-shaped head. 😀

He looks great. His color is getting more natural, his shape is good, his whole self looks bigger… and they’ll start feeding him next week, little bits at a time. Charley is good.

In a funny glimpse into how cancer affects our mindsets, Ezra has been fussy all last night and this morning. We were getting worried and going over all the possible issues as he kept becoming more and more fussy – could there be cancer in his bones still frustrating him as it did early on? Are his blood counts too low? Is the surgery site not healing correctly? Did a clamp come off a vein where the tumor was removed?

Well… we found the issue. He was constipated. 😀 A little laxative, a little exertion… a fine baby. 😉 Ah, to only be worried about typical child issues…

Ezra is doing good as well. The couple weeks after chemo he always has to get shots from me each night, and he sure doesn’t like those. While we ARE home for a month, that month will still get a lot of hospital visits – twice weekly for labs, and the the scans gets crazy. Let me show you an example of a scans week for us – this starts May 1st:

Monday – St Joes at 8am for a 9am scan in Nuclear Med. Ezra can’t eat from 3am the night before til 11am that day. Babies are much more fussy without food than you and I are. He’ll be under anesthesia.

Tuesday – off. Busch Gardens?

Wednesday – 11am-1pm, hospital for an injection of radioactive material into him for scans over the next 48 hours. Ok to eat food. The needle they inject with comes in a lead lunch box and is sheathed in a lead-encased syringe.

Thursday – 11am-4pm scan of how yesterday’s material is distributing throughout his body (it’s “a compound that is selectively absorbed by certain types of nervous tissue, including neuroblastoma cells”). Anesthesia. No food for Ezra from 5am-4pm.

Friday – 10am-4pm, multiple scans and a bone marrow aspiration. All under anesthesia. No food for Ezra from 6am-4pm.

Weekend off.

Monday – 10am-3pm, scans and injections. Anesthesia from 1-3. No food for Ezra from 7am-4pm.

Whew. Then end of May we’ll have scans to get ready for transplant. Then end of May we’ll go into stem cell transplant for 3-5 weeks at All Childrens… getting close. 😀

Then… we’ll finally all be home!

I’d like to share a little reflection I sent to someone earlier today.. the support and love we’ve been shown through this whole ordeal has increased our faith as much if not more than the people who keep telling us our faith has inspired them. It’s strange – from within the situation, both Robyn and I feel weak and weary, although sure of God’s grace and power to heal and sustain. We hear so often how our strength is encouraging – and yet we feel so inadequate sometimes. We hold on to promises like in our weakness He is strong, and have seen such a deeper intimacy in our own relationships with God, as well as in our relationship with each other. The deeper the hurt and questions we have with God, the deeper our understanding and connection to Him grows. Its a hauntingly beautiful situation. Many of the strongest metals in the world are formed with intense heat treatment. That’s about where we’re at.

You guys are all incredible…