Quick note…

Got ahold of Bayer (marketers of Nifurtimox under the name Lampit) – they can’t release it to us because it’s not licensed by the FDA for release in the US. Their lawyers recommended: “the FDA will allow the importation of a non-approved pharmaceutical provided a US physician write a prescription for the pharmaceutical for an individually named person (i.e., these are expected to be extraordinary situations where following the usual procedures would take too long to benefit an individual). One then might be able to go to an internet pharmacy with the prescription to have it shipped into the US.” Pursuing this…

This morning Ezra’s chance of surviving was none. Now, that has changed to slim. We’ll take that.

The major reason they weren’t able to schedule the chemo and continue any sort of treatment this morning is because Ezra hadn’t peed in over 12 hours – this is the method the body uses to get rid of chemo once it moves through the body, so without being able to have normal wet diapers, the chemo would have been quickly poisoning him, faster than the cancer itself was doing it’s job. In the early afternoon today, Ezra suddenly had two full wet diapers within an hour. Keep praying, people! They just started his second night of chemo right now, so we are holding to a sliver of hope. He is still not holding platelets at all, so his breathing has to continue on his own – intubating him (that tube in his throat to breathe for him) brings an incredibly high risk of bleeding internally. In other words, this is a very risky situation which is holding on by prayer and a thread.

His heart rate is lower (good), and his breathing has also calmed down. His stomach is still very distended and his liver inflamed, so we’re not sure how this will play out. We are praying.

In true Ezra Matthews Crew fashion, we have taken over the family waiting room with family. There’s 20 or so people here, crammed into our room and the waiting room down the hall. We’ve set up camp at the local Ronald McDonald house and a few hotels. They’re laughing with us, crying with us, and just being here. It matters. Some have flown in from as far as California or Seattle to be here, and the mood is hesitantly hopeful. We’re all praying, and we’re all enjoying being with each other, even in a moment like this. I can’t understand how people would be able to do this alone.

I’ve been in contact with Dr Sholler, who is the dr in charge of the Nifurtimox trial out of the University of Vermont. She chatted with me for half an hour tonight personally about Ezra and his health and the trial. She has sent me contact information for Bayer, who markets Nifurtimox, and has said they have been known (rarely, it seems) to give out the drug on a case by case basis when speaking directly to the patient or family. I’ll email them right after I press send on this update, and if I hear a negative answer – I’ll have all of you mobilize again to make something happen there. Dr Sholler said she’d received tons of email and phone calls today regarding Ezra. We CAN make things happen in that regard – together we know a lot of people.

As always, I’ll keep everyone informed. We throw all our hope and prayer into whatever basket we are able to get, and this one wasn’t even a possibility this morning – keep praying.

This morning has been another barrage of emotion.

Ezra still hasn’t eaten since Friday, and has barely drank anything. When he does drink, he can only take a sip or two before coughing and not being able to take more in. He is on fluids so at least he’s hydrated, but these are bad signs. He hasn’t gone to the bathroom in over 12 hours, even though he’s had quite a lot of fluids being given – usually he’ll have a wet diaper every couple hours. His liver is still inflamed, and the drs say him not having any wet diapers is 99% caused by his kidney now slowly shutting down. His breathing is more rapid than last night – and last night it was very high. This is because his lung has fluid in it (at least the right lung we know for a fact), and the space under the lungs is also filling with fluids as the tumors are blocking areas the body would normally get rid of fluid. The tumor on his eye has grown downward to be under his cheek as well.

His platelets are not holding – he gets them and very shortly after they’re already gone. Because of this, they can’t do any operations, as the risk of bleeding is through the roof. He’s breathing so fast that eventually he will tire out and not be able to breathe that much, but we can’t intubate him (put a tube in his throat to breathe for him) because any nicks along his throat while intubated with his platelets not holding at all would mean he would bleed internally. This risk is extremely high. When Charley was intubated, that happened as well (but his platelets were fine so it wasn’t a huge issue).

We got results back on the MIBG scans from Thursday, and the Neuroblastoma has spread to nearly every area of his body. His arms, legs, chest, lungs, head, and neck are all showing large amount of activity – much more than he has ever had, and much quicker. Remember, we had MIBG scans the week before as well, and the growth since THOSE scans is quite a bit. We also got results back on his bone marrow biopsy from Monday morning, and his marrow is showing a large amount of cancer, much more than before. Because of the complex situation of everything shutting down in Ezra and the extremely rapid progression of the cancer, the drs don’t feel the chemo can be continued – his body can’t physically take it. We’d be poisoning him even faster than the cancer alone is.

What I’m trying to say is… Ezra is dying.

Neuroblastoma is a very aggressive cancer. It is relatively rare, but is the most common cancer in infants. Only 650 cases a year are seen in the US (compare that to nearly 200,000 annually for breast cancer and over 40,000 a year for leukemia). It is not well-funded or researched, although the past decade has seen a lot more focus on it. This won’t keep happening forever. Doctors and researchers learn from every child who gets this cancer, and the things learned in the past decade alone have been incredibly promising. We hope and pray for a cure or a more structured treatment regimen to be developed soon to have this not happen to other families and children. Not even counting our and your hurt and sense of unfairness – this isn’t fair to Ezra. This isn’t what a 2 year old should be doing. We love him so much.

At the moment, Robyn is sitting in a chair holding Ezra while he rests. They’re beautiful.

So I’ve had quite a few of you emailing, Facebooking, texting, appearing, calling, IM’ing, Skyping, commenting… reaching out to us today. A lot has happened and a lot hasn’t happened, and another update is due to share with everyone where we’re at so far.

Ezra was pulled off the Nifurtimox trial this afternoon before even getting to start it. The trial is being conducted by a hospital in Virginia (the University of Vermont’s Vermont Cancer Center – http://vermontcancer.org/index.php?id=232), and after they heard about the past few days’ events, they are no longer qualifying him for the trial. They feel he’s “deteriorating too fast” and can’t justify treatment or something. Contact them here if you have a beef. 😉 http://vermontcancer.org/index.php?id=6 I was able to ge in touch with Dr Sholler over there and she has been very helpful in working with me to try and get this drug through the company who makes it. We’re trying.

This morning Ezra was extremely tired but still would open his eyes and look at you whenever you spoke his name or made a loud noise. By afternoon, he was no longer responding to those things. He still will open his eyes briefly and talk for a few words every once in a while, but he is mostly out of it. He was making whimpering/grunting noises toward the afternoon today, and his oxygen is still low – so they did a chest xray and ultrasound. They were worried he was bleeding into his abdomen, which he doesn’t seem to be. They did see, however, a lot of fluid buildup in his abdomen, and fluid is now in his right lung as well. This is most likely from tumors blocking the body’s normal fluid escape areas. We are watching this closely. His breathing is also much more rapid because of the fluid buildup. He can’t really have this drained or operated on, because his platelets aren’t holding at all – meaning there is a very extreme risk of bleeding out if he got a surgical procedure.

I feel like this is happening way too fast.

The drs are still fairly sure this is Ezra’s body shutting down. We have started the chemo already either way, and are still planning on treating as scheduled, minus the trial drug (which I hear may be available over the counter in Germany, Argentina, and possibly Mexico… which is a crazy thought for his 30 days of 3x daily 100mg tablets he’d be getting on this trial). They’ve even gone so far as to bring up Do Not Resuscitate orders. At the moment, we have not signed these, as I feel his condition is still much in the vein of having a solid fight in him. I’m not interested in your opinion on DNR papers, so please don’t offer them. 😉 Given Ezra’s current condition, we are doing everything possible to try and beat this cancer still – or at least give him a few more good months. If God is calling him home… well that sucks and we’ll address that when we feel it needs to be addressed. That time is not now.

The room is dark right now, it’s 11:30 pm and my eyes are so dry they’re hard to keep open. All the lights are off but the room stays well lit from monitors. The silence is loud from the filtered air, pumps, and equipment. Ezra is making little noises while he rests. I do not feel strong. I am replaying in my head dozens of moments he and Robyn and I have shared laughing and playing. I fight with my hope, my doubt, my faith, and my sense of a cosmic unfairness in this. One minute the knowledge if Ezra passes he will do so directly into God’s loving arms brings great hope to me; the next minute it seems trite rhetoric. I keep thinking I just need more time with him.

I am praying. I am praying with everything I have. If desire and Godly petition alone can change the outcome of a person’s life, Ezra will no doubt be healed. There are literally thousands and thousands of people praying for him, joining us in crying out for Ezra’s healing, and believing on God for a miracle.

At the end of the day… this just sucks.

This has been an extremely hard week for Ezra. He started the week tired but smiling and talkative. As the days have passed, he’s been increasingly more tired, and the last 3 days he’s pretty much slept all day, with brief moments of being awake and talkative. We were slated to start chemo and the Nifurtimox trial today, and still are – but we wound up leaving early yesterday and asking to be admitted through the ER last night at Arnold Palmer, since he seemed extremely fatigued and uncomfortable. This is very unlike him – even during the treatments he’s had this year. During stem cell he was this out of it, but that was chemo induced.

On Tuesday Ezra’s platelets were 10 (10k that is – a normal range is between 150k-400k, for him 50k-100k is normal), which is low but he’s had that before. He normally gets platelets then, and they’ll jump up and stay that way a few weeks. By Thursday they checked him again and his platelets were 9. He got platelets again on Thursday, and last night they were 5. His hemoglobin count last night was 9 (normal range is 9-12 for him), and by this morning it was 6. This means his blood counts are dropping extremely fast, and the dr has scheduled an ultrasound of the stomach to see if perhaps he has internal bleeding. The dr doesn’t think that’s the case, but we are checking. If it’s not internal bleeding, it’s just the cancer taking things in way too fast. His heart rate is high and his oxygen levels are very low – he’s on a nasal cannula which is giving him oxygen.

The doctor says these are all signs of Ezra’s body shutting down.

This is /not/ an end-all, there have been cases in exactly Ezra’s situation where this chemo and trial drug quickly reacted and the patient got 6 more months of active, quality life before relapsing and passing. We are still 100% planning on starting the chemo (as long as the ultrasound doesn’t show bleeding in his abdomen – there would be no treatment available if that is the case), but Dr Levy has been clear that the chemo itself can push him over the edge of life since Ezra is very fragile right now. Not treating, however – without a miracle – would most likely only give Ezra days from the way he is looking now. He is in and out of waking and sleeping, and we are laying on the bed with him.

Please, pray – we aren’t ready for this.

[long update, deal with it, I need to write ;)]

We are in Orlando, in a hotel which charges $12 a day for buggy “high speed” internet and $7.95 for a room service glass of milk. It’s got sweet art on the walls though, so I suppose they justify it. And don’t worry – we DO have a mini fridge which we promptly filled with a gallon of milk from Publix.

Checked into the hotel last night around 10pm, and after an alright night we spent most of today at MD Anderson and Arnold Palmer hospitals here in Orlando – which I have to say physically are incredible facilities. Beautiful architecture. By 10am we were at MD Anderson meeting with the radiologist, who has a name that would instantly double the length of this paragraph. 😉 He hadn’t had a chance to look at our scans, since us coming here was pretty abrupt, but the tumor on Ezra’s eye is the only one he’d be working on, and it’s obvious enough by looking at it what he needs to do. He said without looking at the scans he knows for a fact it will need 10-20 days of radiation, and will be able to tell us more precisely this week. That will be on a Monday-Friday schedule, of course, since drs don’t work on weekends, so a minimum of 2 1/2 weeks, max of 4 on radiation. It will be daily, with anesthesia, just as it was when we did it on Ezra’s abdomen at St Joes earlier this year. The radiation is purely for “comfort” as the trial we’re on should be working on the tumors, but the one on his eye needs to go down fast since it’s getting painful for Ezra. The radiation will not kill it, but will definitely shrink it.

After meeting with radiation we walked across the street and had a quick lunch in an extraordinary lobby made of rounded glass (imagine being inside a 60 foot glass golf ball) before heading over to the hemoc clinic here (hemoc means hematology/oncology – study of blood and study of cancer) to meet with the folks who will actually be administering the Nifurtimox trial we’re here for. We were in that room for hours, chatting, waiting, and chatting. The goal of the trial is basically one thing – giving us some extra time with Ezra.

The full trial runs 6 months, and is cancelled any time the tumors start growing again. It runs in 3 week cycles of a week of chemo, 2 weeks off. The trial drug, Nifurtimox, is taken 3x daily throughout the entire thing – just the chemo requires us to be in the hospital. We’d be getting chemo Oct 18th-22nd (next week M-F), Nov 8th-12th, Nov 29th-Dec 3rd, and again in late December. Again, this trial has shown promise in many kids with worse situations than Ezra’s – giving children with only weeks to live an extenstion of 1-2 years on life. Still, there is no one who has had this aggressive of a relapse and survived longer than that.

I struggle to find reasons for this. I wish I could tell you I have an unwavering faith which constantly assures me everything will be “alright” and Ezra will be healed and live til he’s an old and ornery man. But that is not my state of mind. I know God doesn’t always heal – and I don’t know why. I prayed with every fiber of being I have Price would be healed, and today he waits for us to see him again in eternity. I prayed for years for my best friend’s father, who laid in a coma for 3 years before dying one night. With the same hands and mouth, I have prayed for people who had been blind for years and seen their sight restored. I have seen the lame walk after praying God’s healing in their life. I don’t know the reasons God heals some and brings others home, but I ask Him every night and every time my eyes or mind touch on my son to heal Ezra. I cry when I’m driving and see a billboard of a father and son. Commercials showing kids play make me change the channel. I find myself thinking of all the things my dad and I did growing up and wondering if I will have those moments in the role of a father.

There’s a guilt that comes with this dance of faith and doubt. In Mark 9, there’s a story of a father who’s son is “possessed with a spirit which makes him mute” – and brings his son to Jesus for healing. In verse 22b, he says this: “if You can do anything, take pity on us and help us!” 23And Jesus said to him, ” ‘If You can?’ All things are possible to him who believes.” 24 Immediately the boy’s father cried out and said, “I do believe; help my unbelief.”” That’s where I’m at. I KNOW God can heal. I’ve seen it, I’ve heard it – I’ve even been the vessel He moves through. But I also know God sometimes DOESN’T heal; not here at least. Not the way we may think – this “genie in a bottle” mentality we developed somewhere along the way. I don’t believe it lessens who He is, and I fully believe God is as consistent, powerful, and good today as He’s always been – I just think we misunderstand sometimes what we’re promised. Eternity is ours, yet the earth is cursed. I may not get to know Price here, but I will see him again. With Ezra… I pray for miracles. The thing is – I feel guilty sometimes with this doubt. Should I believe constantly that God will heal my son here? Or isn’t it better to constantly believe He is who He is, and whether I live 2 years or 102 years I will gain eternity at the summation of this life? I feel as if I’m saying my goodbyes to Ezra, and I feel guilty for feeling this way. My faith in God feels unchanged – my understanding of life, eternity, faith, and entitlement feels different.

So why tell you? Why do you care? I don’t know. It’s personal. You may judge. You may think less (or more, I dunno) of me. But I want you to feel what I’m feeling. I want you to know it’s ok to be hurt. It’s ok to not understand God and still know He is good, real, and attentive. Hurt hurts. I can see pain in my wife’s eyes, and it makes me be even closer to her, even more attentive to her need and letting her know she isn’t alone. God does this same thing to me – I am the father in Mark, saying “I do believe; help my unbelief.” It sums up my moment.

I know God can heal. I pray for it throughout every day. I’m trying to be transparent here; I want other people with these same struggles to know you’re not alone. You’re not alone following hard after God and having hard patches along the way. Robyn said early on in this – if the end result is heaven, our sadness is simply in not knowing those we lose more here before we get there.

Anyway I’ll stop… I usually try to put a nice cap on these updates, but I don’t know… I’d rather just tell you what I’m feeling. I long ago stopped worrying about if it fits in a box – I just know my heart is after God. The lessons we learn along the way we just have to pray we use effectively to become better while we’re here.