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!

Price’s memorial will be this coming Monday (March 29th), at 7pm in the Grace Family Church Van Dyke main sanctuary. Visit http://www.gracefamilychurch.org/how-to-find-us/ for directions.

The memorial will be a public event – we will have a private burial later in the week. We’d love to see you all at the memorial to offer your sympathies and share this moment with us.

I’ve been sitting here for an hour erasing and retyping the last few sentences, and trying to figure out what else to type… and I’m at a loss. So let’s call it a night, and we’ll chat Monday. Thank you again for all your prayers and encouragement…

We spoke with Ezra’s doctors today, and it looks like his surgery to remove the tumor will be April 1st! Everything is going amazingly for him, and we’re glad to see it.

I’m not sure the previous update went out in email, many people said they didn’t get it – so if you’re reading this via email, please check CarePages for today’s earlier update.

This morning marked the twins 1 week birthday.

On Saturday, Price developed a grade 4 bleed in his head, which is the highest grade. It is not uncommon for babies born this early to have a bleed in their head, and levels 1-3 are acceptable and generally work themselves out or are treatable. Once a baby has hit grade 4, there is a very slim chance they could survive, but if they become unstable, there is no longer anything the doctors can do.

Around 3:30pm today we received a call from the doctors letting us know Price had become unstable, and we should come to the hospital.

His condition was unrecoverable, with many complications that had developed over the last 24 hours or so which were not, taken as a whole, treatable.

Shortly after 4:30, Price was taken off his ventilator and Robyn was able to hold him while I sat next to them, and God took back what He so recently had given us.

I can’t explain why this happened. In Job 2:10, Job said “Should we accept only good things from the hand of God and never anything bad?” This hurts deep, and I struggle to see a purpose or reason behind it. And yet as my friend Brandon said, Price has made it to the foot of God quicker than any of us, and I know one day I will see him again. I know God wraps Himself around myself and my wife and my now-two beautiful sons even as He takes one son home much quicker than I had ever thought He would. I know the future is bright, and I refuse to let this scar make us angry or bitter. To do so would only be unfair to the family we have become and are becoming.

James 1:2-4 says “Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything.”

So we persevere, knowing that our pain is heavy now, and God is still here. We hold on to His promises, even when we don’t understand why they didn’t seem to ring true in Price’s life.

“When death, like a gypsy, comes to steal what I love, I will still look to the Heavens, I will still seek Your face.” – Jars of Clay.

Apparently the twins did not want to wait – this morning at 9:06 AM our *tiny twins* were born. Baby A, Charley Adin Matthews, was 1lb 15oz. Baby B, whom we don’t quite have a name for yet (we’re thinking Price, and pretty sure the last name will be Matthews 😉 – it’s just that pesky middle name we’re working on – thought we had a few more weeks to decide…) was 1lb 13oz. They were delivered at 26 weeks, and term is 40 – so they’re about 3 months early.

They both look great, and are doing very well – they’ll have to be in the NICU (neonatal intensive care unit) for 2-3 months with assistance in finishing up the developing they’d have been doing in the womb. They are definitely responding and acting great right now, and babies at 26 weeks now are not a very scary thing – they grow just fine, just need a little extra time in the hospital in the beginning.

I’ll post a couple pics here – I’ve got to get back to Robyn, but whoa! We’ve got 3 boys now!