A quick update on Ezra today.

He is needing more oxygen, and his platelets remain low. The drs think he has become refractory to platelets, meaning his body is thinking they are foreign objects and destroying them as soon as they see new ones (platelets his body makes are still fine, but because of the high amount of cancer in his bone marrow he is not currently making new platelets). He got more red blood today (packed cells) to up his hemoglobin count. His heart rate is staying steady at around 150, and his breathing is also slowed down from the much-too-fast pace he was breathing early Tuesday and all of Monday.

We are still giving him the chemo, today will be the third day. It is given around 8pm. There is a very fine line we’re walking between how much we can treat the cancer and how much his body can handle. There’s a very real question of – if we can attack this cancer, can his body heal? We’re running on prayer, hope, and desperation.

Ezra was supposed to start radiation today (well, that was the schedule from last week) to the tumor on his eye, but in order to get radiation he has to be sedated, and he is in no condition to be sedated now. No dr would even try – his breathing and O2 is low, platelets are very low meaning if he DID stop breathing during anesthesia they couldn’t intubate without an extremely high risk of bleeding as I’ve said before. The tumor is growing fast on his eye and is visibly slightly larger each morning. We are praying the chemo will attack this tumor on his eye as well as the 2 in his lungs to give him some comfort.

As an interesting side note, in October alone this site has had nearly 100,000 page views – an incredible amount of traffic. You’re an army. We want to thank all of you personally for praying, reading, and helping in so many ways. You guys are all incredible and we are humbled by your attention.

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.