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.
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…
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. 😉
I’m sitting in the PICU at Tampa General, looking out the window into the dark and quiet. It’s very peaceful, and I’m still feeling some of yesterday’s euphoria. I don’t mind.
Robyn is at home getting a much needed night’s sleep in our own bed before a long couple weeks of hospital, between recovery here and then a final round of chemo at St Joes for Ezra.
Ezra is doing great – he has a fever, which is not uncommon after surgery. They’ve done labs and don’t yet see any infection, so he’s just getting Motrin and Tylenol. The fever will break soon, all part of recovery. His counts are all good, and the nurses here in the PICU are good.
Charley is still stable over at All Children’s, and we’ve got a little more information on him. After round tableing, the drs over there agree it’s best to tackle the hydrocephalus (the swelling in his brain) before dealing with the PDA (heart murmur). They’ve scheduled his surgery for Monday, and will be putting in what’s called a reservoir. Eventually (before he comes home) he’ll need a shunt put in, and he will have one for life. The reservoir is a temporary solution while he is so small. What it does essentially is divert the excess fluid into a tiny bucket (reservoir) which they place in his head, and the neurosurgeon will then have to extract that excess every few days using a needle. When the shunt is put in the reservoir will be removed, and the shunt will simply redirect the fluid back into the body – completely ok. Surgery, surgery, surgery.
To clarify what Ezra’s tumor removal means in his treatment, he’s *not* yet “in remission.” There’s still the possibility of microscopic bits of cancer left, which the chemo round after the surgery recovery will attempt to clean up. The stem cell transplant will be the final step in his pre-remission treatment, and when we’ll be able to proudly say 100% he’s cancer free. From there there’s different after-care treatments we will do to make sure we keep him that way.
It’s Good Friday. This year brings our family a memorable Easter weekend. Jesus beat death this weekend a couple thousand years back. There’s some parallels, as I play the last 6 months back in my mind, between Jesus’ victory then and Ezra’s very current war against cancer. We stay resting in our faith.
We *just* met with Ezra’s surgeon – he came up to our room to let us know the surgery is complete. The surgery went without a hitch – they were able to get every bit of the cancer out of his body. Every single bit. GREAT SUCCESS. Robyn is literally crying she’s so happy. This day has been a long time coming.
They’re in the OR as I’m typing this, sewing him back up for the next 30 minutes while the PICU gets his room ready and Robyn packs up our stuff from this room.
Ezra did lose his left kidney – which is not a major issue at all, the other one will pick up the slack without issue. The left kidney was just too involved with the neuroblastoma to be salvaged. Neither of the doctors are worried about this in the slightest though.
Last night was a long night, Robyn slept 15 minutes and I slept 30. Ezra had a hard time falling asleep, so he wound up just being held by Robyn for the whole night, and he didn’t get to sleep til past midnight as he and Robyn looked at the pictures on the ceiling and laughed and smiled. It was a beautiful moment, and right now is another one.
We’ve got a week at least of recovery here in the PICU, then straight to St Joes for a final round of chemo before the stem cell transplant. We’re not finished with his treatment, but today was a huge bout of the fight. Thank you to everyone for your prayers, it is so refreshing to see the sun breaking through.
I’ll keep you all updated….
it’s 1am, Thursday morning. I’m sitting in the dark in our room at Tampa General, and wanted to shoot out a quick email to everyone to please pray, as Ezra’s surgery to remove the tumor is scheduled for around 7am.
I’ll send out a detailed message of how it goes, etc, come tonight (Thursday night) or Friday sometime, when we have a second. It’s a long surgery, anywhere from 8-14 hours. We’ll be anxiously sitting around that whole time… reading, eating, praying, and waiting.
Thanks for everything, folks. This is a big step!