So… hey… where’s Charley been all this time we’re stuck in grating limbo in Orlando? Well – that’s a story you’d be impressed to hear. So I’ll tell it. We’ve been in Orlando 3 weeks (well, we were home ONE day in there) with Ezra. Charley has been at home this whole time, hanging out with a parade of amazing women we know. Vivian, Robyn’s mom, flew in a couple weeks ago and is staying here almost a month carting Charley around to appointments, whipping his nursing care company into shape, and keeping our house running while we’re in O town. On top of being here as well when she can to see Ezra. We offer a huge thanks to Joy, Kristin, Kim, Nicole, Debbie, and whoever else is taking shifts loving on Charley. I don’t know what we’d do without you guys.

Charley is doing GREAT and he’s babbling, smiling, and having a great time at home. He’s working out his little muscles and seems to be coming along with absolutely no complications from his early entrance into this world. Joy texted me the other day with an audio clip of him babbling and talking in his little baby voice… and sent the opening picture in this post along with it. It was the first time I’d seen him smile. We can’t wait to get home to him!

Sometimes I think by the time we can give Charley the parenting he deserves he’ll be a year old.

There’s so many weird mental levels to the situation we’re stuck in. There’s a guilt at not being able to be with Charley which we feel whenever we think of him. A little sadness with that too. On the Ezra side – it’s the strangest feeling. We’re basically waiting to find out if our son will live or die. We have faith God can heal. I pray for it every day. Many times a day. Like I’ve said before, we also know God calls people home at all sorts of ages, however fair it may seem to you or I. And right now – we’re just waiting and praying. That feels weird, I’ll tell you. He hasn’t gotten worse, which is good – and he’s only very slightly better. We are cautiously optimistic.

Things are much the same with Ezra – his platelets stay a day or two and disappear. His red blood cells (hemoglobin) seems to be staying better, but he needs them every other day still. He’s on TPN which is IV nutrition, and lipids as well (IV fats). He still hasn’t talked or eaten anything – even though our friend Jamie (all the way from Seattle!) had these awesome cupcakes sent in for him (don’t worry, Jamie, we’ll see they don’t go to waste). We’re getting him to take a few ml’s of the Nifurtimox each day (a few have asked – no, it can’t be delivered via IV or any other way) but it’s really tough for him and he isn’t able to take the full dose. We could do an NG tube but it’s risky for infection since he’s JUST out of chemo. We prefer to keep trying by mouth – we don’t mind extra work on our parts obviously.

His eye seems a LITTLE smaller but it’s tough to tell. It doesn’t really open from the tumor stretching his skin on that side of his face. I hate cancer. It goes for the things you love and tears them apart. It tries to impress itself on the beauty of a family, a man, a woman, a child. It saps your energy, it robs you of your nutrients, it kicks in the door of your house and sits itself right at your table in the middle of dinner. It comes in the middle of a joyful time in life and punches you right in the gut. It’s pure evil.

We are most likely going to have to be here a minimum of 2-3 weeks more. As soon as his white cell counts start going up we can start another round of treatment and continue the Nifurtimox. That should be in the next week, but he’s weak now and will not be ready to go home by then. So this hospital stay is looking like it will last at least 6 weeks. He’s usually pretty good about getting his white counts up, so we’d be starting most likely not this coming Monday but the one after that.

I should take this time to bring up a note on treatment options. And believe me – this is directed to no one in particular. For every one of you who has suggested an alternative treatment option, there are at least a half dozen other people who have emailed us the same option. We appreciate your concerns, and we appreciate the research and suggestions. I guarantee you since the moment Dr Rossbach sat us down over a year ago and told us our beautiful 1 year old boy had a high-risk, stage 4 cancer which more kids die from than live through – we have researched and read through every available treatment option. The parents of Layla Grace Marsh (another beautiful Neuroblastoma child who passed just in March this year) pretty much summed up my feelings on alternative treatments perfectly in a blog post they wrote in January – if you’re interested in those thoughts, you can read through Ryan’s post.

Support has been pouring in from all over the country and world still. We’re floored with the response. Ezra’s story and life are affecting family lives, prayer lives, and thoughts on life in general. I believe I’ve said it before (but I couldn’t find the post on the blog so maybe not) – but early on in this Robyn said she prayed simply that this situation would have a positive lasting effect on people. I see that happening daily. Let me challenge you all with this – yes, sure, hug your kids and your mom tighter and be glad for what you have. But please, don’t let the realization from this be that you have a lot and you’re grateful you don’t have to feel this pain. I pray people would understand a simple thing – the world is not all butterflies and roses. There is real hurt and real need, and “someone else” is not going to address it. Please, be constantly working to better those you come in contact with. Help people. We all have different ways of doing it, but let it be a little bit of a sacrifice, and let it not be just during jolly times of the year to assuage your desire to be a “good person.” If there was an emoticon for “spoken with conviction” I’d toss it at the end of this paragraph, but I couldn’t find one in the list.

Packages, comments, Facebook/Twitter shares, and emails have been flooding us – even Disney World sent us a package full of collectible buttons and signed pictures from the characters written to Ezra (thanks Jack for taking point on that barrage of communication to Disney).

Robyn is cleaning our hospital room as she does every morning, and I’m sitting in my “office” about to press send on this update. See ya guys in a day or two…

Sorry for the lack of updates – I woke up this morning to a couple dozen messages from various avenues essentially saying “what is going on?!?!?! no updates??!?! how is Ezra?!?!?!?! fool of a Took!?!?!?!” I haven’t posted anything these past few days because… well, it’s been the same as the last update, so I didn’t want to bore you. Of course there’s plenty going on mentally and emotionally that’s enough to fill a book, but… well, you can buy the book. 😉

Generally you can tell the feel of the content of an update I post by the opening paragraph. Better moods translate to more humor, introspective to philosophical, sad to blunt. Today is a good day so far.

Ezra still hasn’t eaten in nearly 2 weeks, and hasn’t spoken in a few days. This morning Robyn and I noticed he was tracking us with his eyes (he hasn’t kept his eyes open for more than a couple seconds in days) for decent amounts of time. We decided to give him a sponge bath, and as we were doing that he threw up a few times – which he hasn’t done this whole time either. It seemed like he actually felt better after – he was looking around even more.

Since he seemed to be feeling better, we decided to put Winnie the Pooh on the iPad and let him watch it in the bed. Right now, he’s in Pooh’s corner watching it with eye wide open and has been for over an hour – and remember, before, he hadn’t had his eyes open for more than a couple seconds in a week. He still isn’t talking, and is extremely weak. But this is progress – the dr was 99% sure last Monday Ezra wouldn’t make it a few days, he was that bad.

For all the flurry and hurry to try and get that Nifurtimox (which we did get), he has only taken 2 doses of the 6 or 7 we’ve tried. He still can’t really swallow, and he is so out of it he just doesn’t take it. You can’t force a kid, much as we’ve tried – it just dribbles out of his mouth most of the time. We’re hoping today will improve that outcome since he seems to be doing a little better now.

The question now becomes if this chemo’s affect will last long enough to let his body heal itself – if you’re looking for direction in your prayers, pray that. He had a great response to his last round of chemo in September, but we were to this point within a few weeks of him recovering from that round of chemo. Prayerfully he will get to a place now where we can get his eye radiated (the tumor has gone down ever so slightly – but it’s still blocking him from seeing anything, and must be painful from pressing against his skull), and get him to start taking this Nifurtimox regularly.

Please keep praying – Ezra IS doing better.

We’ve had an incredible response to Ezra’s story. This blog has had over 230,000 page views from over 55,000 visitors this month alone. That’s not even counting the CarePages (I like the blog better though 😉 ). It’s been humbling to see the hundreds of daily emails, comments, Twitter comments, Facebook messages, and other methods of support coming in. Please keep spreading the story – we fully plan on starting something to fight this stupid disease when we have a more stable situation with Ezra, and all this attention now will translate well into a giant social hammer to swing. Neuroblastoma is a punk, and get’s very little attention and funding compared to many other cancers. Many other childhood cancers are the same way – yet they’re killing our children. This has to be stopped – families shouldn’t have to feel this much pain. I know we’ve changed for the better through and because of this past year, but it hasn’t been worth the cost.

Things today are much the same – we were able to get Ezra to take some of the Nifurtimox this morning by dripping it into his mouth with a syringe. Last night we tried to get him to take some but it mostly came out of his mouth. The Nifurtimox is a pill which we crush and mix with Coke (seriously – the dr told us it’s what they’ve found it mixes best with) and syringe into his mouth. The problem is he isn’t really coherent, so it is tough to get him to drink. Even from this morning, much of the syringed liquid just sat in his mouth until he swallowed by reflex some.

When I say “stable” in the posts these past few days, I mean his heart rate is within normal range as well as his blood pressure and breathing rate. He is still requiring a lot of oxygen support, although it’s still just through a mask (he CAN’T get intubated right now anyway even if he required it) – but the respiration therapists say they usually don’t even give this much oxygen through a mask. It’s just our only option right now. Even with that, his 02 saturation (us hospital folks call it his sat) is hanging at 94-95, where he’s never been below 100% until this stay.

Ezra hasn’t had anything to eat in almost a week now. He is on fluids, but it’s a delicate balance – he’s a bit swollen from the amount they have to give him, but he HAS to have that much to flush out the chemo. Yesterday was the last day of chemo, so we may be able to dial that down over the weekend. He hasn’t had more than a sip of drink in 5 days, and even in the last 5 days it’s literally been 1 or 2 ml at a time, a few times a day. Yesterday and today it was only to try and get the Nifurtimox in him.

He has been asleep this entire week. He’s unable to sit up or move much other than a hand looking for his pacifier or an arm rubbing his eye if the morphine goes too long. His eye by the tumor looks worse. He’s woken up for 30 second spurts occasionally early in the week to say something or look around, but that’s dwindled quite a bit to where we haven’t heard him talk (other than “no” if we try to clean his mouth, which is getting dry from all the 02 the mask is pushing and no drinking) in a few days now.

I can’t help but feel like he’s getting much more worse than better. We hold on to hope, and I’m not honestly not sure whether it’s a faith hope we are holding onto or pure blind desperation of wanting to see our son smile and talk again. I wonder if this is even fair to him – he’s just laying in a bed, drugged up on morphine (letting that slide more than the 2 hour increment he’s on now results in his heart rate jumping and him moaning and hurting) and being supported by medical pumps and daily infusions since his blood counts don’t stay up. I sit and play my guitar to him, and Robyn and I must have said “I love you” more times to him this past week than in the whole past year – and we’ve never been stingy with that.

The chemo can take up to 5 days to show any results, so we’ll see if there are visible changes anytime in the next few days. I’m praying like I’ve never prayed, and literally tens of thousands of you are as well – sometimes God simply is calling someone home.

Well, we just signed the papers to dispense the Nifurtimox to Ezra, and he’ll be getting his first dose this evening. Whew – that was a long battle involving chatting with dozens of countries, doctors, FDA, research coordinators, and Bayer, the drug company themselves. Huge props to Dr Sholler in Vermont and Dr Levy in Orlando as well as all their staff in assisting us to make this happen.

Ezra is more stable now than he was earlier in the week, but we’re still not sure what that really means. His oxygen has remained at the same level for a few days now, and earlier in the week it was having to be upped daily, so that’s good. The doctors say there is now more fluid in each lung as well as in the abdominal cavity. The chemo is definitely working, but the problem remains – how much? The neuroblastoma is all over – one of the most aggressive the drs have seen. There is a lot of uric acid in his urine, which shows the tumors are being broken down, but there’s no way to tell how much or where.

He is still not talking or opening his eyes, but his heart rate is lower and oxygen is good. There is a lot of swelling from fluid retention. The eye where the tumor is next to is having a pretty rough time – he pretty much can’t open it at all, and when he does you can see it is not doing very well. It sucks to see it, I’ll tell you that.

Neuroblastoma is a beast, and it’s frustrating as hell. We will definitely be dedicating time and money into doing all we can to ensure other families don’t have to continue going through this as time goes on.

Re: Nifurtimox, I believe we should have some by Monday if not today. It’s been crazy to see everyone mobilizing to get this stuff to us, and I think we’re close now. I don’t know how much it will be able to do. We are still praying for a miracle.

Tonight will be the last day of chemo. Basically, the plan after this is to wait and see if the cancer was killed enough to allow his body to recover. We are nervous, since the last round of chemo worked pretty well – but within 2 weeks the cancer had returned. At this point his cancer is much heavier than it was before, so we need a miracle. Thank you again to the thousands and thousands of people who have been praying, sharing our site, and sending in thoughts, donations, etc… so much!

I hate to have folks seeing him sick like this – he’s such a happy kid with an incredible personality. Here’s a picture from less than 2 weeks ago of him playing with Robyn… I miss his smile. The kid is hilarious. I added a few videos of him as well (look to the right on this page, there’s a video gallery link) so you can see his personality.

Hey – Charley is doing great! He’s at home in Tampa, and we’ve had around the clock nursing combined with a parade of our friends standing in to make sure he’s being well taken care of. We’re truly blessed with the family we’ve come to know here.

Please keep praying.