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…

Been a little over a week since I last updated.. no news is good news. Everyone’s been bugging me for an update, and I noticed I was getting to the point where more people were asking me how things were than conversing about what’s going on… so… update! It was time today anyway…

We were admitted this morning to St Joes for round 6 (final round) of chemo. This is the last round of chemo Ezra will do in his treatment! We’ll be here til Sunday, and then home for a solid month. I’m looking forward to that – I need some slowing down. Near the end of that month off (probably the last week), we’ll start coming in for scans again, which will be leading up to his stem cell transplant.

The stem cell transplant will be an intense 4-6 week process at All Children’s. For those of you who haven’t caught it before, here’s a brief explanation of what it is and why it’s so long. A stem cell transplant actually consists of an extremely high dose of chemotherapy which completely destroys his immune system. NOT weakens it, as previous chemo has done, but eradicates it. He is then injected with stem cells from himself (taken after the 4th round of chemo, when his blood was cleared as having no cancer), which go to work rebuilding his immune system. The majority of the time spent in the hospital is simply recovery while his body is rebuilding it’s defenses. The actual chemo part of that (ok, so this 6th round we’re in isn’t EXACTLY his last round) only takes a few days.

After his stem cell transplant is completed, he’ll be officially CANCER-FREE, in remission! From there we’ll move to “after-care,” which will include some radiation of the tough spots during this treatment (liver), and an antibody called 3F8. These are after-care treatments which lower the risk of relapse considerably.

Ezra is recovering well from the surgery – he’s got a wicked sweet scar which will help him pick up chicks on the beach when he’s older (amen?), and although it still hurts him (it’s been two weeks today), it’s looking good. He is able now to walk again as long as he’s holding onto something. The chemo may slow down the recovery, but I’m predicting by next weekend he’ll be walking around again on his own and running again soon after. It was a huge surgery, so a few weeks to recover is expected.

Charley is at All Children’s still, and things are looking well there also. Today (Thursday, April 15th, tax day – I should turn mine in, since they’re sitting on my desktop finished) is his 1 month birthday. The brain shunt was successful – they had a couple days this past weekend where they were unsure, but now have verified it’s working well. It makes his head look a little funky. 😉 He’s too small still for a typical permanent shunt, so they’re using a kind they do on preemies, called a subgaleal shunt. Instead of draining the fluid into his abdomen, a subgaleal shunt drains it into his scalp, where it’s then absorbed back into the body. This leaves a large, weird bubble on the side of his head, and he looks a little like an alien. Well, an alien with a lump on his head. Before he’s released to come home he’ll be big enough to put a permanent shunt in, which has no noticeable outward effect at all – and the subgaleal will be removed. No alien baby at home… dang.

Charley also has a heart murmur, called a PDA, which will need to be “ligated,” or closed, soon. This will probably happen tomorrow, or Monday. We’re waiting to hear from the surgeon on that, but it’s an extremely minor surgery – 20 minutes or so. Shouldn’t be a big deal – and from there, he is good – just starting feeding and getting him fat and healthy, ready to be taken home around June. He was born 1lb 15 oz, and last time we asked for his weight was Monday – 2lb 10oz! Once he starts being fed more than IV nutrition, he’ll get to be a fat little porker in no time. 😀

Anyway, it’s nearly 2 am, and the nurses keep coming in, and they will keep doing so all night, and I just want to sleep. Sorry, no words of wisdom tonight, I’m PLUM TUCKERED OUT. So… I bid you all a fond farewell, and look forward to your comments. Robyn and I both have read all 1130 comments so far on these CarePages – you guys are great through all this…

–Kyle

This morning Charley had one of those milestones every kid looks forward to – his first brain surgery!

The neurosurgeon over at All Childrens put in a shunt (a temporary one for now until he has grown a little larger), which will relieve the pressure from his hydrocephalus (liquid building up in the brain). He will most likely need to have a permanent shunt put in weeks from now when he is bigger, before he comes home. There is a possibility this could cause damage and lead to varying degrees of cerebrak palsy, or it could wind uo having no effect at all! The surgery went without a hitch.

We’ve been having a good week, which is so appreciated. We’re getting very little sleep, but things are going well for Ezra and Charley, which is priority. Ezra has been waking up every hour or so from pain when his meds wear off, so it’s hard to get any sleep. They’re continuing to refine the meds they have him on to help with that, and this morning was pretty good.

Both yesterday and today we’ve been able to get out and about and spend some time with each other and doing errands – big thanks to my folks and Kristin and Abby! Also, I’ve said it before, but let me say it again – we SO appreciate everything all of you guys have done. Between meals, prayer, gift cards, emails, texts, yard work, information… we’ve been so blessed to be surrounded by the people we are. We so wish we had time to sit down and write you all thank yous and tell you how much it means to us – let me assure you, it means a lot. Vivan, Robyn’s mom, was here for weeks hekping, and just recently left. She even had our carpet cleaned!

Ezra is doing beautifully. He’ll most likely be released home on Thursday or Friday, and then we’ll have the weekend home and head to St Joes Monday for another round of chemo. Then we’ll be home by Thursday, and have an entire 3-4 weeks home! Yesssssssss…..

Happy late Easter…

Sent from my iPad, excuse any spelling errors. 😉