Yesterday’s service was a moment Robyn and I will never forget. I walked into the sanctuary and saw a wall of balloons 20 feet high and 80 feet wide… with dozens of huge flower arrangements… a slideshow of Ezra playing… and then my eyes settled on the box Ezra’s earthly body will rest in from now on. I stood there and cried. I miss him. It hit me then he isn’t coming back. I know he’ll never leave us in our thoughts or actions, but we will never again see him here.

It was a beautiful day with nearly a thousand people in attendance. Robyn and I are honored to have had so many of you there. Dozens of you have emailed in – yes, we did shoot the entire service on video, and we will post it later this week for those who missed it. Friends and family flew in from all over the country. Friends and family here and from everywhere flooded our home with flowers, food, and cards.

I have said this before, and will mention it again as it’s heavy on my mind. I have spent over a decade heavily involved in the church, and I’ve seen how easy it is to lose our focus on living like Jesus did to a focus on programs and schedules. It’s easy to take the injustices done against us by Christians and twist them into something done to us by Christ. It’s easy to watch hypocritical hurting people like we all are judge others and in our own mind create Jesus with that same character. Some people call it being jaded.

In 14 months of struggle I have cemented in my mind the importance of living like Jesus did. I have been slammed to the floor with tears and questions time and again, and been awed by the generosity we’ve been surrounded by. I have stood back up constantly, and stayed standing the times I have by grace and love. I see the incredibly deep need for us to care for each other. For me to care for you, and you for me. I mean this in a global sense, not specific to myself. I want to thank you all for caring for my wife, my children, and myself. It comes in many forms, and we each reach out as we can. All you do impacts. I personally read EVERY one of the thousands of total emails, comments, and messages which come to us. You’ll have to excuse my lack of response if it was your experience – I simply can’t keep up with responding. Know though that we read these, and we keep them all. We’re incredibly grateful to all of you.

Many of you have approached us with fundraiser ideas, pledges to help, and actions you’re going about doing already to help the fight against childhood cancer. We are awed and feel a part of a move which will affect that battle heavily and positively. We ARE going to be starting a foundation to channel our efforts, hopefully by the end of the year. First we need a few weeks break. 😀 We’d be honored to have you fighting with us then. Once we’ve rested, we will put together something which I hope you will stand with us in to directly push towards a cure for childhood cancer. I hope you’ve seen it’s face, and I hope you’re angry. I hope you’ve seen it’s not always smiling children on a commercial, but is also broken families, extreme struggle, and painful loss. I hope you also know this is NOT an unbeatable foe. Many cancers have gone from a 50% survival rate or less earlier this century to close to 97% now. It just takes attention, time, and proper funding into proper research. We plan on working hard to make sure the focus is put in correct places, not just “cancer” as a broad term.

You should see Charley. We’ve been home(ish) this past week – well, crazy busy with planning Ezra’s celebration service, but home much more often than we had been. Charley is stronger than ever, over 17lb, and wearing the same size diapers Ezra did. He’s smiling a lot, and babbling like no tomorrow. He’ll most likely no longer need oxygen support by early December. He’s taking little bits of liquids orally now, so we’re moving towards getting the pump feeds to not be necessary. He is a good looking, strong little man. 2011 will be a strong new year for our family of 3.

A day has passed since Ezra died. Thank you so much to everyone who has sent their love to us. I wrote the post yesterday about Ezra’s passing, and we went straight to sleep. By the time I woke up we had 500 emails in our inbox. Thousands of people shared the links on Facebook. More than one person who’d been following our story from various states told me they went to work and someone at work showed THEM the links to the blog. Emails came in from Kenya, Ireland, Dubai… the list goes on. We are humbled.

We will be having Ezra’s celebration of life service this weekend. I would like to invite all of you to come. Whether you have met us personally or not, you knew our son by reading this. Your prayers gave us strength during this past year. Your lives have been touched as well. We welcome anyone who’d like to come and celebrate Ezra with us.

The service will be as follows:

Saturday, November 13th
Grace Family Church
Main Sanctuary
5101 Van Dyke Rd
Lutz, FL 33558

12:30pm-2pm Visitation with Family
2-3pm Celebration of Life Service for Ezra

We will be having a private family-only burial directly after the service, so please make sure to arrive by 12:30 to visit with us. When you drive into the church, head to the large building farthest away from the entrance to the church off Van Dyke. We are asking people NOT to wear black – we want a vibrant, happy celebration of the constant joy Ezra lived with. Wear some boyish colors. 🙂

If you are flying in, you’ll want to come in to Tampa International Airport. It’s about 20 minutes from the church. We do not have any hotel or car arrangements, so please make your own arrangements. EDIT: We do have a hotel which is about 45 minutes from the church and our house in Clearwater which is offering to put up any out of town guests for the weekend. Please email us if you would like to take advantage of that by clicking the “get ahold of us” link on the right of TheMatthewsStory.com.

If you would like to send flowers, please send them to the church on Saturday, and have them delivered by noon on Saturday.

Funeral and cemetery fees are a reality and already well into the thousands of dollars, and if you’d like to give to us for that, feel free at thematthewsstory.com/give. We are also planning on starting a foundation to fight childhood cancer and fund research, and we will continue this blog to let everyone know as we move forward with that.

Ezra died this morning.

I never wound up going on that bike ride – Robyn called me Saturday night saying Ezra was getting worse to the point the doctors and she thought I should be there. I drove back to Orlando. Ezra was hurting from the swelling in his abdomen, and his morphine was upped to keep him comfortable Saturday night. Yesterday, Sunday, we knew he was slowly shutting down. My family came by the hospital, and so did Robyn’s. It really was a beautiful day… a lot of laughing, crying, and loving on Ezra. By 9pm or so, everyone had gone home, and Robyn and I went to sleep. Ezra was on a 98% oxygen flow, and his oxygen and heart rate numbers had both been slowly dropping all day.

At 2:40am we woke up to his monitor alarming a low heart rate; it was 50 and slowing. We curled up in the bed with him, praying, kissing, holding, and talking to him. By 2:50 he was gone. We lay there with him a while, then started packing up the room to go home without our son for the second time this year.

I am a better man for having had Ezra as a son. Robyn is a better woman. Over half Ezra’s life was spent battling this cancer… living in hospitals… and yet I’ve never met a child as giving, joyful, thoughtful, kind, and fun as Ezra was. I hope I can live a life showing that much inner strength and character.

I wish you could have known him more. I feel this blog/CarePages has been a powerful tool – in the past month over 100,000 individual people have visited this site, every one touched by Ezra’s story somehow. Emails have poured into our inbox. Packages have flooded our mailbox, and the hospital’s. I can never sum up my son with words on a screen, but I pray you got a piece of his personality through this. I hope you felt you knew him. I hope you feel the pain and joy this past 13 months has brought us. Ezra is someone more people should have had a chance to meet.

We do not see the end of the fight against cancer here for us. How many more families are in the middle of this right now? How many will be tomorrow?

We will be having a celebration of Ezra’s life, we hope this weekend. I will update here with information when we finalize those details.

Please, be changed because of this. Recognize the flawed world we live in, and work to help the ones you can. Really work. Recognize the hurt in the world, and recognize the grace that gives us a chance to still be beautiful.

2 Timothy 4:6-8 “For I am already being poured out as a drink offering, and the time of my departure has come. I have fought the good fight, I have finished the course, I have kept the faith; in the future there is laid up for me the crown of righteousness, which the Lord, the righteous Judge, will award to me on that day; and not only to me, but also to all who have loved His appearing.”

We miss you, Ezra.

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.