A little over a week ago we brought Charley home. We haven’t really slept much this past 8 days! We’re up every few hours with stuff. Moving Charley around the house involves loading up an oxygen tank, feeding pump (if it’s feeding time – 3 times a day for an hour each time and then overnight which needs to be changed each 4 hours), apnia monitor (which we /may/ cheat on sometimes if we’re sitting right by him, heh) and of course baby. 😀 Heading out as a family is pretty much on hold until some of those things are no longer needed by him – right now it’s just a heck of a lot of STUFF! That all to say – it IS great to have him home. We’re all finally in the same house and we’re so happy to be able to be loving on him here in his own house with us.

I remember when Ezra came home- we felt the same way. Time melted into blocks of feeding, napping, and changing, with random grocery store runs and folks stopping by bringing items or meals. A big thanks to the many many many people who are pouring help into our family this month – folks seem to be coming out of the woodwork lately to help out. The Hope for God’s Children auctions are still going on (see previous update for the link), and we’re getting phone calls and emails and meals being dropped off… lots of encouragement.

Charley has multiple appointments with his pediatrician, the neurologist (for the shunt), physical therapy, speech therapy, the pulmonologist (lungs – he has “chronic lung disease” which should go away as he ages but is because he was born so early)… now on top of Ezra’s labs, scans, chemo, etc. Ezra seems to be good; the tumor on his eye shrunk a good bit during and after chemo, but has stuck at the size it is now for a week. We’ll have scans next week and most likely start chemo again the week after.

The drs say Charley is perfectly on track for his due date (which would make him about a 3 month old now developmentally). His weight is good, all physical functions look good, and so far there are no signs of cerebral palsy – which he is high risk for because of the prematurity and the brain bleed/shunt. So… that’s great!

Well… it’s late, and I’d like to share more but I’m tired and this wound up being mostly a status update I suppose. 😀 See ya guys around!

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😀

No Etsy ones are up yet…

Been a while since I wrote a health and where-we’re-at update, once again. This one is a good update!

We’ve been intensely busy these past couple weeks (I guess these past 10 months, ha). Ezra finished his ICE chemo, which sounds way more glamorous than it is. It is supposedly a very intense chemo which can have serious complications during administration, but Ezra flew through it without so much as a hiccup. If anything he was a little more tired than normal, only as his hemoglobin went down. And the cancer WAS reactive to the chemo – whew. The tumor on the side of his face has gone down considerably but is still present. The one on his neck is nearly gone. This is a good sign, and we will be doing another round of this same chemo in 10 days or 2 weeks most likely. We are still looking at heading to Memorial Sloan in NY after that (possibly end of this year).

This chemo HAS put Ezra’s counts very low, so we’ve been in the hospital 4 days a week with labs, getting blood and platelets, etc. He has shots daily at home (same as always after chemo) – which I hate giving because he knows what they are and when they are, but isn’t old enough to know WHY they are. :/

Today, Charley came home.

It’s been 191 days (192 if you count today) Charley’s been in the NICU, and today we loaded him and a bunch of gear into our car and drove him home. He’s on an oxygen tank, an apnia monitor, and has a feeding pump. He has leads on his chest to measure heart rate and breathing rate, and has a tube in his stomach for feeding. His oxygen is only at 0.2 liters, if you know anything about that – which is practically the lowest he can be on – he shouldn’t be on it longer than a month. The feedings are every few hours, for one hour, with a 10 hour continuous feed overnight. He has 5 medicines he’s on which we use a syringe and shoot through his G tube.

Anytime we take Charley anywhere (like tomorrow Robyn has appointments in Tampa for him while I have appointments in St Pete with Ezra) he’ll need all that gear with him – oxygen tank, feeding pump, and apnia monitor. He’s actually healthy and doing well, but is not yet to a point where he’s able to do all the things a normal baby would do at his age (which developmentally is about 2 and a half months at the moment). Like, y’know, breathe fully well on his own, convert air to oxygen… suck on a bottle. Minor things. 😉

The Hope For God’s Children auctions start tomorrow, and I’ve been getting a lot of questions on how it works. Essentially, a bunch of designers have created children’s stuff (clothes, accessories, etc) which they list on eBay and Etsy and people bid on. All proceeds go directly to us to help out with life and medical. We’re about to have expenses pile up with plane trips to NY and a lot of home health stuff which may not be covered with our medical coverage, so it’s good timing. I’ll write an update tomorrow as well with info on how to access the auctions, or you can check hopeforgodschildren.org – right now nothing’s live.

Anyway, there’s probably more, but basically I’m wiped out and life is about to get even busier (how is that possible?!) so I’m signing off now to go help my beautiful wife with our kids. 😉

Alright, I’ll write this update.

We’ve pretty much avoided any sort of fundraising during all this, as I’m not the type to ask folks for money (and am not asking for US in this update either). That being said, this specific hospital stay has really made me love All Children’s Hospital even more, as well as Moffitt Cancer Center where Ezra gets his stem cells stored. And I love riding my bicycle… and I just happened to walk by a poster for Cure on Wheels yesterday.

Cure on Wheels is a 100 mile bike ride on November 7th (well, there are other distances as well but Team Ezley – that’s our team – is doing the 100) which all the proceeds go directly to All Children’s Hospital and Moffitt. We’ve met a ton of kids and families who have seen incredible service and caring spirit from All Children’s specifically, and when I saw the poster I knew I was going to do the ride, regardless of if I did it alone or not. 😀 So far, it looks like I’ll be doing it with at least 3 other folks (hey hey, Peter, Kevin, and Jenni).

Anyway, this is the part I feel a little bad about but whatever – the deadline for donations to count for your team (you can still donate after it seems) is the 15th, which is Wednesday. So many of us have been blessed financially, and many of you have asked what you can do for us – and we really don’t need much of anything, just prayers. If you’re one of those people who has some money to sacrifice for a good cause – this helps tremendously. I can’t stress enough the difference All Children’s makes in cancer families lives. We’ve been to 5 hospitals so far and ACH’s facility, staff, and approach to treatment are SO refreshing and encouraging compared to the others. Bravo.

Please visit http://www.gifttool.com/athon/MyFundraisingPage?ID=1390&AID=1232&PID=166135 and click the Sponsor Me link on the right to support Cure on Wheels. I’ve set a goal there but if we go over it it’s even better. 😉 It’d be awesome to see y’alls sacrifices continue to plant seeds and affect more cancer families lives!

And as for the kids – Charley is coming home Monday! More on that later… and Ezra is going home from chemo tomorrow, and will be getting stem cells Wednesday to improve his counts from this round of chemo. Then we wait a couple weeks and do more scans…

We’ve confirmed with the doctors the lump on Ezra’s face (by the right eye) and on the left side of his neck are, in fact, tumors. We were at All Children’s today about to start the chemo which was a 2-3 hour one and then head home, when Dr Nieder came in and said he’d been on the phone with New York (Memorial Sloan hospital, the leading neuroblastoma research hospital) and they recommend something different. Because this cancer is SO aggressive (relapse within 100 days of stem cell transplant is very rare and aggressive), they recommended we use a much higher intensity chemo. This is not normally the best choice, it being so close to stem cell transplant,  since it could drop his counts very quickly. However, because the cancer is aggressive, treatment is called for to hit this cancer as hard as we can. We have enough collected stem cells in case his counts do drop too far we can reintroduce them and get them back up (yes, that means a 2nd stem cell transplant, although those don’t take as long since the majority of the time spent in the last one was recovering from the chemo, not the transplant).

The goal right now is to make sure there is a reaction to the chemo. If there is one, we can move forward with other treatment. Assuming the chemo DOES work, there will be a visible method of showing this – his tumors will shrink. Because the one on his face is easily visible, we’ll know within a week or two of chemo being over if it worked. More scans can be done as well, but the tumor shrinking will be the most obvious effect.

If the cancer is affected by the tumor, the next treatment option we are looking at with New York and our local oncologists is something called MIBG therapy. He gets MIBG scans right now to show where the cancer is. The way this works is MIBG is very slightly radioactive and viewable with a specific scan, and neuroblastoma takes up MIBG cells. So they inject it, wait 24 hours, and do the scan. The glowing areas will be neuroblastoma (and a few parts of the body which normally take up MIBG as well).

With MIBG therapy, before injection, the MIBG is attached to radioiodine. This is a form of iodine that is radioactive. The MIBG chemical is taken up by the cancer. The cancer cells are then killed off by the radioactivity. No surgery is involved. This is an intense treatment, done in a lead lined room with limited contact. There are only a few hospitals in the US you can get this in, NY being one. It has been shown to work very well. It’s a 5 day process, in which Ezra, being so young, would be kept under mild sedation the entire time. Older kids are awake and active, and say doesn’t feel as bad as chemo, it’s just boring. Ezra being so young wouldn’t understand and has to be kept nearly asleep the whole time. We are not allowed in the room except the last couple days, and even then in the farthest corner from him if we do go in. Nurses even are not to be in the room more than 15 minutes at a time or so, and even then with special outfits.

We’ve been in more contact with folks who are experts with neuroblastoma (read: the folks in NY), and have a better grasp of what this relapse so soon after transplant means. There is currently no cure for his situation. The medical term for the goal of these treatment plans (which are the best options available) is “prolonged life” with an extremely low chance of “cure.” The “prolonged life” can add “up to” 5-7 years of life –  the hope then being for a miracle, which we know is possible. Whether through a cure being discovered in that time, or God simply flat out healing Ezra out of nowhere.

The quickness of this relapse changes a lot. Neuroblastoma only has about 650 cases per year in the US, so without talking to a specialist (which we’ve been doing much more since the relapse) it’s difficult to figure out what to do when you’ve gone off national protocol. Up until the relapse we were moving according to the national protocol for neuroblastoma (chemo, stem cell, antibodies, after-care), which works well in the majority of cases, and is recommended by specialists as well. Since relapse, we are thrown off the beaten path, there is no protocol in place, and things are much more hairy.

We’re forced to make crucial decisions quickly, and it’s a scary feeling. We’re reading, calling, faxing, emailing, and finding every way possible to ingest even MORE knowledge of this cancer and treatments in order to make the wisest decision, and so far we’re at what I’ve discussed above. If it sounds like we keep changing plans and such often throughout these updates, it’s because it’s exactly the case. Cancer doesn’t stick to a plan – it changes, it reoccurs, it has a mind of it’s own it often seems. One day you’re having a birthday/No Evidence of Disease party, and the next day you’re writing an update saying there is 20% cancer in the marrow and new tumors present. There is no warning, and there is no graceful fall – you’re just suddenly at the bottom of a hill you were halfway up a second ago.

Charley is still doing well, and should be home within the next couple weeks. He will still need oxygen, and will have a G tube in his stomach for feeds.

All this to say please keep praying. Keep holding up our arms for us, because they are heavy. We know God does miracles.

(disclaimer – this is a long update)

Yesterday we noticed a swelling on the side of Ezra’s face near his eye, and took him into the ER at St Joes to have it checked out. They thought it was either an infection or more new tumor. After a CT, and waiting through the night here on antibiotics, the oncologist came in this morning and thinks it is more tumor. There is also a lump on his neck. We are waiting on a plethora of scans to be scheduled to know for sure the current situation, which won’t be able to be completed til tomorrow, since it’s a holiday weekend and hard to schedule a radiologist, anesthesiologist, nuc med scans, etc all at once with only the emergency crew on staff. It’s much better to wait a day and have it all happen at once than to do the time slots available today and keep putting him in and out of anesthesia. A dr and 4 different nurses are outside in the nurse’s center calling all the departments working on pressing the urgency and getting the scans scheduled.

We’re sitting on a vinyl couch with thin-but-durable hospital linens strewn across it. My legs are dangling off the couch while Robyn is curled up on the other side, and Ezra is cross legged in the middle of us, eating Froot Loops out of one of those plastic all-in-one packaging/bowl combos. He’s also got Oreos, some sort of Keebler elf cookies, chocolate milk, and the occasional sip of Robyn or I’s mocha. Yah yah, stunt your growth, I know.

The room is white walls and bright yellows, reds, and purples for highlights. Most of the rooms have drawings from past kids all over the ceiling tiles, which they take down and let people draw on, but our ceiling is drawing-free in this room. There’s a stale taste to the hospital air, which never has enough moisture in it and always leaves your skin and mouth feeling dry after staying the night in it. A big light blue metal crib in front of us made by HARD MANUFACTURING GROUP reminds us of a cage with metal bars on the sides that slide up and down so patients don’t try and escape at night. 😉 There’s still blankets bunched up hanging from it’s top bars from where we attempt to block out the night lights of a hospital room for Ezra while he sleeps. Toys with SJCH CHILD LIFE scribbled on them in worn Sharpie are on the bed and floor. Ezra is reading a book with Handy Manny in it.

Nurse’s names and direct line numbers are written on a dry erase board on the wall, along with a green and red poster telling us our room’s direct phone number and what channel the kids movies are on. It’s a little past noon and Facebook tells me everyone is in church or out doing their Sunday relaxing things.

Last night we slept about 3 hours, and Ezra got a couple more. Tossed back in the admitted-in-the-hospital life in the middle of a Saturday when I was standing on stage with my buddy from Seattle about to lead worship and got a call from Robyn I needed to come down to the hospital as it was not looking like the best news. When you have a kid with cancer, life takes second fiddle to the constant hospitalization, scheduled or not. We’ll stay again tonight here, and we’re scheduled for chemo Tuesday… which should still happen, unless it’s pushed to Wednesday while they finish up scans. Hoping not, as the reoccurring cancer needs to be attacked ASAP. The good thing about the chemo scheduled is it’s only a 2-3 hour drip then we can go home each day. If the swelling is tumors, they MAY have to change the chemo… hopefully it doesn’t get changed to something requiring we’re admitted.

Robyn mentioned that although this last year has been far and above the hardest in our life, it has also been the best year of our life. Ezra is growing into a smart, though-provoking, ever-curious and ever-inspiring boy. Charley is getting ready to come home, and we are excited to have him around. Our strength and faith have been tested in fire and strained to the point of breaking, and I fully believe it’s something that in the end will make both more resolute. James 1:3-4 (NIV), “Because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything”. 1 Peter 1:7 (NASB) “so that the proof of your faith, being more precious than gold which is perishable, even though tested by fire, may be found to result in praise and glory and honor at the revelation of Jesus Christ;” We have many areas of life overflowing with blessing – our children’s health unfortunately is one area seemingly lacking those blessings. We keep praying, and we know we’re joined by literally thousands of people who have joined here, commented through Facebook, emailed, called, and a million other ways of letting us know you folks are all with us in prayer. Oh, and various entire African villages fasting for days on end.

We were worn out 3 months ago. I’ve heard people who tell stories about being beaten up talk about a point after being hit so much the body just goes numb as a sort of protection method or something, and you just stop feeling the pain until it’s over, when you realize it all and can have a moment to feel it. I think we feel that a lot. The old phrase of “if someone ever laid a hand on my kid…” comes to mind, except we’ve been watching our children get beat up for months, with a helpless feeling and a reliance on God and His sovereignty which lends us strength but doesn’t answer our questions always. You know the feeling in a scary or suspenseful movie like when they’re walking in the dark or something and you just KNOW someone is gonna jump out of some corner? That heightened nerves feeling where your body is tense? That feeling is like a constant undercurrent in our life. I guarantee you our faith is ever-present and gives us joy even when happiness is out of reach… it’s just the unanswered question of the situation wears on you.

It’s good to share these feelings. Maybe they’ll help someone else in a rough time or similar situation. Maybe I’m just writing as a way to get the feelings out for myself. Either way I’m at 8 paragraphs and there’s a scroll bar in this little window telling me I’ve been writing a while. 😉 Thanks for praying with us…

[this update written by Robyn]

Two years ago tonight, I went into labor with my first son. I knew he would be my little life changer, although I wasn’t expecting all this at the time. Over the past 10 months he’s been battling neuroblastoma like a champion, putting up with a huge amount of tough situations and hard times. He’s the kind of kid who makes everyone smile, and he’s made all this much easier on Kyle and I – just seeing his smile, or hearing his voice, or him grabbing our hand… it makes a huge difference in days that can seem hard to find a reason for.

Thank you so much to everyone who came out to the party yesterday – we packed the house and we were so happy to see you all. We have an amazing group of friends, we really love you guys. Over 120 of you stopped by to enjoy the pool, the grill, the company, and Mandy’s vegetarian chili! Ezra had a great day as well, so thanks again to everyone.

Neuroblastoma is a tricky cancer – it has a high reoccurrence rate, so high that doctors don’t even give these patients a “remission” status. They call it “no evidence of disease.” He was given that status after the stem cell transplant.

We went in today for weekly labs, and Dr Rossbach had a meeting with us to go over the results from some of the scans from last week which we hadn’t heard results on. Specifically, Ezra’s bone marrow, which showed evidence of neuroblastoma again. One side was clear, but the other bone marrow aspiration showed 10-20% neuroblastoma cells. It’s a big setback, and we’re not sure what to do now. It’s hard to term this, it could be called relapse, it could be called “progressive disease”. The difficult part of this is the neuroblastoma that’s still here has most likely been there the whole time but hiding somewhere, and is now coming out after all this treatment – meaning it’s much more difficult to get rid of. It’s a very serious setback.

We’ll be getting a call from St Joes in the morning after the oncologists go over some options – most likely we’ll go in to chemo Wednesday, which will be a 2 week stay in the hospital, followed by 2 weeks at home. We’ll repeat this twice total and then check his marrow again. We’re hoping to be able to do the chemo at All Children’s since Charley is still over there, but we’ll have to see.

Please keep praying – the prognosis on neuroblastoma is one of the lower in childhood cancers already, and once you have progressive disease it’s even lower. It’s scary. We know God still is God, and we’re praying hard. Because of this happening, we can’t do the antibody treatment (at least not in Tampa) that we were thinking was next. We’ll do the chemo, and then we will probably have to go to New York for a few months for treatment afterwards. There’s a great hospital there called Memorial Sloan which is the top neuroblastoma hospital in the US. They have a lot of experimental treatments and studies running which show a lot of success. Once a neuroblastoma patient has relapsed there’s actually no protocol even in place – it’s all “well this has worked alright” or “we’ve seen good things with this.”

Tomorrow (Tuesday, the 31st of August) is Ezra’s 2nd birthday. We’ll take him to the zoo I think. Today is yet another life-changing day.

-Robyn