Some of you who prefer to read our blog over the CarePages (I include more photos since it’s easier to do so on the blog) have asked for a way to subscribe to updates – I’ve added a “subscribe” option on the top right menu where you can enter an email you’d like updates mailed to!

I’d like to pass along an email I received today from Marilyn, a lady at our church, about a fast this weekend for Ezra. Robyn and I will be fasting tomorrow and we’re asking folks to read over the below email and fast and pray as you can. I have seen first hand God’s power to heal and although I have also seen moment He doesn’t, I know our prayer and fasting is effective and powerful. Miracles still happen!

=========================================
This is the email Marilyn sent out to all the small group leaders:
=========================================

I am sending out an urgent prayer request for our precious little Ezra Matthews, son of Kyle and Robyn…some of you might not know the handsome young man who plays guitar and sings on Saturday night…well that is Kyle.

Ezra has been battling cancer for a year now and he was doing great…until September ….it has returned more aggressive than the first time and they are now giving Ezra 2-3 months to live unless our Lord…the Great Physician, The God who heals… does a miracle…….so we are proclaiming this weekend as a weekend to pray and fast for baby Ezra to be healed miraculously!!! please choose one day or all three days of the weekend to fast and pray.

Sunday is 10/10/10…this happens once every 1000 years. Interesting tidbit…10 is the number of perfection of divine order…completeness.

Also John 10:10 says “that the thief comes to rob, kill and destroy but Jesus says..I have come that they will have life and that more abundantly”…so ladies I’m believing that Sunday is a time for God to bring about a miracle for Ezra… Please join me in praying for this precious family!! Love you all…Marilyn

This is the email I sent out to the MOPS steering team and Mentor Moms:

You can do an Absolute Fast which is no food, just water or do water and juice.
You can do a Daniel Fast which is no breads, sugars, meats, wine (or alcohol) and drink only water
You can do a Partial Fast which is where you pick one, two or three challenging things for yourself to give up like maybe coffee and chocolate?
You can also add fasting TV and/or sleep to allow more time to pray but if you pick those I would encourage you to do that along with fasting some sort of food as well.
The point is to sacrifice. And to pray for Ezra everytime you think about what you are sacrificing.

The Scripture I read last night was from Ezra 8:21,23 ” I proclaimed a fast, so that we might humble ourselves before our God and ask Him for a safe journey for us and our children with all our possesions…So we fasted and petitioned our God about this and He answered our prayer.” ( He was asking for protection from their enemies so they wouldn’t be attacked on the road and the Lord granted it to them.)

Just a quick update on the Nifurtimox trial in Orlando.

We have been in contact with Dr Eslin there all this week discussing options, as well as the drs in NY, at All Children’s, and at St Joes, and we have settled in on a course of action including that trial. I just booked a hotel in Orlando (yahhhhh, insurance doesn’t cover THAT, ha) – we’ll be going there for 5 days starting Sunday night and have appointments Monday starting at 11am. Robyn’s mom and step-dad fly in Sunday morning, and we’ve got 24 hour nursing here as well, so they will watch Charley while we are there. The trial is done at MD Anderson in Orlando, and requires they do their own scans – so this coming week we’ll just be repeating the scans we’ve already done this week, and meeting the drs to discuss scheduling and Ezra’s case, etc. Come the following Monday (the 18th) we’ll begin the chemo that is associated with the trial, as well as taking the Nifurtimox. The Nifurtimox is simply a pill – according to the trial he’ll take it daily for 6 months. The initial chemo is in addition to the pill, and only lasts a week, 5-10 hours each day. We’ll get a hotel again that week, and be home this coming weekend in between.

This week while we’re in Orlando we’re going to try and do Disney World on Friday. We’d like to do as much fun stuff with Ezra as we can. If any of you have any hookups at Disney World or know of any cool things there we can pay extra for or arrange for that a 2 year old would like (breakfast with characters? stuff like that) please let us know. We’d like to do some stuff to have a ton of fun with Ezra while we get this trial started. We will do the parks again the following week while we’re there – maybe someone knows a deal we can get on annual passes? If this trial does work, he’d need a weekly clinic day in Orlando at MD Anderson.

The trial has been proven to prolong life up to 2 years in cases like Ezra, when effective. We are praying God does a miracle, and there’s always a chance some new treatment could come out in the time this may give him. As it stands, there’s still no cure for his current situation.

We are tired, and we are praying to God for a miracle. We ask you keep doing the same… and we so appreciate all the support pouring in.

It’s been an emotional few days.

Yesterday we got news (finally) that we were approved for 24 hour home nursing care for Charley for 60 days. Which is AWESOME – Ezra has so many appointments and it’s so incredibly difficult to be both a parent and a nurse to both of these kids at the same time on top of handling the emotional load – we really need the extra set of trained hands around the house. Some of our friends have been around helping and we’re so grateful. I haven’t done much work at all the past week trying to help Robyn out, and she’s pretty much at wit’s end trying to carry around the whole of Charley and his wagon full of medical equipment and pay attention to a clingy Ezra as well. Leaving the house is still very difficult strapping all the equipment in and watching both kids.

Our first nurse got to the house today at 7 and is watching Charley all night – so I have time to write to you while Robyn eats her 1st actual meal of the day.

Ezra has been very clingy and seemed uncomfortable the past 7-10 days, so we’ve been anxiously awaiting these scans. He had scans today (a CT and the injection of a contrast for his MIBG scan tomorrow) and has one more tomorrow (the MIBG scan). The results are not good. We haven’t got the results of the MIBG scan obviously since it’s tomorrow, but the CT results are back and bad. The tumor on his face has grown larger than when we started chemo last round (Sept 8th), and has progressed toward his brain. There is also a new lesion (read: cancerous mass) near the back of his head. His abdomen has many new tumors which are all growing and were not there when he started chemo. His counts are not staying recovered as they should be by now, showing his bone marrow is still involved and the cancer is not dying there.

Essentially, while it initially looked like he had a positive reaction to the chemo, it turns out to be extremely short lived, to the point his cancer is termed non-responsive to this chemo.

This means there are only a few drugs left to try, and all of them are less aggressive than the one we just tried.

Dr Nieder has recommended we try a trial using a drug called Nifurtimox (http://www.nmtrc.org/phase-ii-nifurtimox/) which is showing extremely promising results with neuroblastoma and is being run in Orlando (and a few other hospitals across the country). We will be mailing all our scan results to NY as well as Orlando tomorrow (and we’ve already been on the phone with them) to get both of their expert opinions, but it looks like this may be our next step. There have been multiple patients who tried this and have been living over two years on it before relapsing. Remember, after the relapse Ezra was given 5-7 years of “prolonged life” IF and ONLY IF we got a response to this chemo – which we did NOT it turns out. Nifurtimox has been around for decades, but mostly used in Central and South America to treat parasitic infection. A young girl in the US a few years back happened to have neuroblastoma and got a parasite, and also happened to be treated with Nifurtimox. Her tumors went down considerably, and thus this study was born. It’s been doing very well in 70-80% of it’s recipients.

We had a long conversation with a few doctors today, and we are really putting our hope in this trial in Orlando, perhaps something crazy from NY we haven’t heard of yet, or God doing a miracle (never out of the question). When it comes down to it, his cancer is EXTREMELY aggressive, and is growing even DURING chemo now. The incredibly hard and painful truth is if the trial is not effective and the cancer continues, Ezra most likely only has 2-3 months of life left.

Please keep praying.

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!

http://shop.ebay.com/?_from=R40&_trksid=p3907.m570.l1313&_nkw=hgc+matthews&_sacat=See-All-Categories

😀

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.