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…

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…