I’m back in Tampa today since I’m doing the Cure on Wheels 100 mile bicycle ride tomorrow morning. (You can still donate to that if you want, although it doesn’t go to Neuroblastoma specifically – proceeds support our local children’s hospital and Moffitt). Since the riders have to be there by 6am, it wouldn’t make much sense for me to leave Orlando at 3 in the morning to get there, and Robyn was gracious enough to let me sleep in our house last night and tonight so I’ll be [slightly] rested for the ride. Thanks, babe. I meant to be training this whole past month but obviously circumstances have not allowed much of that, so as my friend Kevin said, I’ll be “high on motivation, low on preparation.”

Being home is weird. I haven’t been home in almost a month. Everything is in perfect working order here. All the people who have been helping out with Charley have been also keeping our home in tip-top condition and it’s beautiful. I don’t know how we can ever repay – it humbles us to see this amount of help. The calm and peace of the waterfall in our back yard contrasts this feeling in my mind of being… off kilter I guess. I don’t know how to describe it really, but we just sit in limbo constantly with an unanswered question. I suppose that’s how life is, but this question of Ezra is wearing on us. Each day is wholly different from the previous – even if it’s the same, because now it’s the same a day longer. I feel apprehensive. I’ve been sitting staring at the waterfall for an hour just feeling all this. It’s such a gorgeous day and it feels strange to see so much beauty while feeling so much pain. I have no point, really, I’m just trying to pen down this feeling. It’s literally elation one minute slammed to deep hurt in the next, and everything in between.

We’re not really sure how Ezra is doing at the moment – there are a lot of factors in play. Yesterday he started talking a little bit again – he woke up and said “momma” twice. When Robyn came to the bed, he asked for juice. He didn’t drink much, but it’s something. Vivian, Robyn’s mom, and Tanya, her sister came by to hang with Robyn while I am back in Tampa. For a few hours they hung with Ezra while Robyn and I left to drive around and pretend like we have a normal life. Vivian said Ezra was again asking for juice, and drank a decent amount. That’s a big step!

At the same time, his liver is still extremely enlarged and not going down. They did an ultrasound today, so we should know more soon on that. It could be a massive tumor, or it could simply be retaining fluids. This can be a sign of a few things, but we’ll wait to see until we know more. It’s painful for him, and he keeps making little whining noises for hours on end, even with morphine, Benadryl, cartoons, my guitar playing, and Robyn and I hugging and kissing on him. That’s a sound that’s hard to listen to for hours knowing you can’t address the issue at the moment.

Charley looks great and he is growing like crazy. He is learning to sit on his own, and will most likely no longer need oxygen or the apnea monitor after his appointment in early December to check progress.

These are the best of times; these are the worst of times.

Alright – so I left you in a moment of peril with us there a few hours ago. Dire straits. Since then a lot of good things happened. Thank you (seriously – thank you) for praying.

The CT came back and was fairly definitive the “stuff” in Ezra’s chest was fluid, and not blood or tumor or anything else. This is good. The dr quickly ordered the chest tube procedure, and a pretty cool Irish doctor/mother of 6 with an accent right out of a movie came up quickly to the 4th floor procedure room.

In less than 10 minutes she’d inserted the chest tube and drained a significant amount of fluid out of Ezra’s chest cavity. This won’t address the fluid in the lower abdomen, but that isn’t a pressing issue at the moment – the pressure on the lungs and heart was. As you can see from the xray above, which was taken right after procedure, the difference was big and quick. (And yes, if you’re a medical person, the chest tube WAS pulled back a little after the above xray was taken – that’s a little far in they decided after seeing the xray.)

The chest tube will stay in him until the drs feel it’s no longer necessary. Right now it is necessary. It’s literally just a small tube coming out of his side. Well, with a long tube attached to a bag also, heh.

Here’s Robyn standing over Ezra post-op:

And I just know some of you want to see the gunk close up. Well, you’re disgusting. But I’m totally with you. So here’s a close-up of that bag. Yah, it is red – but it’s not blood. Blood would be a much darker color. All this stuff was pressing against Ezra’s lungs, and now it’s hanging in a bag at the foot of his bed.

The CT (that’s an xray at the top of this post, not a CT) showed some other interesting things. The most positive – many of the tumors are showing signs of dying. Some are not, but quite a few look to be smaller or dying. This is good news. It means he is responding to the chemo, and it means he is fighting hard. I am sure all of your prayers are making a difference.

An interesting mystery – Ezra’s liver is huge right now. As in – huge. Like 5x it’s normal size. The drs aren’t sure yet why that is, although from his chemistry they can tell it’s still doing it’s job; it doesn’t look to be dying at all. The liver is not a critical issue right now, but it may be a symptom of something else – what, we’re not sure.

So… where are we at? Well, today was a lot of good news. We are now still waiting for his counts to come back up. If they do by Monday, it’d be exactly 21 days since the last chemo started – the earliest date we could start the next round of chemo. That’s the plan if his counts are good. This release of pressure from his lungs and heart should make him much more comfortable in the meantime.

We are not in the clear at all. We are very much still in a dangerous place. He still hasn’t even spoken or eaten in weeks. He is still asleep all the time. He is still weak, and the cancer is still extremely aggressive. We still have weeks left we’ll be here in the best case scenario. But by God, we have a foot in a door that was about to close. And it’s wedged in there pretty solid.

I will continue to repeat – please do not stop praying for our family. We’re thanking God for yours.

So as I mentioned last night, Ezra’s heart rate has been up and his breathing has also been very rapid. We were thinking this was from the fluid in the lung (an xray was taken on the 18th which showed fluid in the abdomen and some in the lung), and perhaps the heart beat being so fast was from pain, although we weren’t sure what specifically was causing that. The tumor by his eye is enough better that it looked like it shouldn’t be causing that much pain (although it’s still very much there, and he still can barely open that eye at all).

The dr suggested we do a chest xray again to see what was going on. The results are not good. I’ve posted a side by side of the xray from the 18th and the one from just now below (check thematthewsstory.com if you’re reading this on CarePages). I’m not sure I was supposed to have this yet… but uh… I was snapping pics on my cell phone while the doc wasn’t looking as he showed us. 😉

You can see a couple weeks back there was something there (we think fluid), and today that is nearly in his entire chest cavity.

We are not 100% sure this is fluid – it could also be tumor. And if it is fluid, we’re not sure if it’s basic fluid which we may be able to drain, blood, or what’s called Malignant Pleural Effusion – basically a secretion from tumors which would not be able to be drained as the tumor simply keeps making it. The dr has just ordered a CT scan stat, so Ezra should be getting that within the next few hours to try and get a better hold on what this is.

If it is simply fluid (not blood, not tumor secretion, not tumor) we are going to try a chest tube to drain it. This will allow Ezra to breathe easier and slow his heart back down (the thought being the heart is beating faster due to pressure on it). There is a very real risk of bleeding associated with this option, but his platelets have been hovering around 20 the last few days, and we will give him more today as well as daily going forward. If we do nothing with this, it is not stopping so it would soon mean he would not be able to breathe anymore.

If what we’re seeing there is either blood or tumor, the situation is much worse, and… well, basically, we’d be unable to do anything anymore for him but pray. Please keep doing so. We’re on our knees in faith and fear.

We had a fairly uneventful Halloween here. Well, Robyn and Ezra did I should say. Like a chump husband, I had to be in Denver on business so I was gone all day Saturday and Sunday. And thanks for asking, yes it went well. 😀 My folks stopped by the hospital to keep her company, as did her mom.

Things are pretty much in a holding pattern at the moment. He still hasn’t spoken or eaten. He still hasn’t really been “alert” – although he has definitely been awake and watching some cartoons. So maybe you could call it “alert,” just not interactive. Today marks two weeks past the day the drs had thought he most likely wouldn’t make it through the night.

Ezra got an infection over the weekend, spiked a tiny fever (100.5), and they gave him antibiotics to help push it back down. His heart rate had been up to 200 while he fought that, and now seems to be much better back around 130s. Still high for him, but low for this stay. His liver is also inflamed, and we do not know why yet.

The nurses thought it would be a good idea to try and clean out Ezra’s mouth with a bristled tooth brush, which apparently it wasn’t. His platelets were already really low. Something either nicked him in his mouth with the bristles or dislodged a scab or something from a mouth sore, and he wound up bleeding for almost 3 hours while they loaded him up with two bags of platelets. Ok, so maybe the weekend sounds like it was eventful, but really – by now us weathered hospital folk term this a boring weekend.

So let’s review. What’s the plan? We’re waiting on his counts to come up, and as soon as they do we are going to repeat the chemo. We’re still looking at Monday for that – but really it comes down to if his body will be ready or not. His white blood cells are coming back already, although tiny amounts. Monday is a very real possibility for starting another round. Assuming that goes well, we’d need to wait for his counts to recover AGAIN, then do some minor surgery to get rid of the fluid in his lungs. The fluid in his abdomen should drain itself by then, but the lung most likely won’t. Then there’s a day or two recovery from the surgery… we may well be here another month at least. If we get to there though we’ll hopefully have a once-again healthy Ezra and Charley all in the same place. Pray!

Robyn is a ferocious lioness who speaks out treatment plans and tells the drs what to do, ha. There’s literally been 3-4 times she had to tell them what something probably was, had them test/do it, and she was right. When they weren’t sure what to do at all. They’re smart folks – she just knows her son well.

I miss Charley. I miss home. I miss a bed which doesn’t wake me up literally every other hour with messed up shoulder pain. I’m tired. We’re both tired. We’ve been exhausted for a year. We’re doing everything we need to be doing, I know that. I know all the comforting words and viewpoints, I know this too shall pass, and I know we’re where we need to be right now. It just sucks, the whole thing of it. Days kind of just pass, you never know which day of the week it is or what hour. I’m hungry… what meal should I be eating right now? That sort of thing. You know when you’re really tired and you get that ache behind your eyes feeling? I feel that more often than I don’t.

Anyway… enough of that. I think I’ll go grab a Dasani from the Family Resource Room and some ice and a cup from the Family Nutrition Room and hit the sack. Thanks for hanging out, you guys are all great.

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.