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.
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!
C is for Charlie
Last edited by thetuxracer; 09-30-2010 at 11:09 PM.
Reason: Automerged Doublepost
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 (Phase II - Nifurtimox - Neuroblastoma and Medulloblastoma Translational Research Consortium) 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.
That sounds awful. We pray that the trial is successful for you. Ezra is a strong guy, he will fight back!
Last edited by thetuxracer; 10-07-2010 at 10:42 AM.
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.)
Posted 5 hours ago
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.
Good Luck Robyn, Kyle, Ezra! I hope the DRs work a miracle! It would be great for two heroes to have each other as brothers!
Thanks Jack for the info..I sent WDW an email requesting some help and support for Charley and Ezra....Now, requests from the Almighty, (He IS still in charge..)....Jack, that was a great idea there...If anyone knows any organization that helps children in situations like Ezra and Charlie's...Please DO contact them and make requests...It doesn't hurt to ask...Organizations like Ronald McDonald's House, Shriner's, Lions Club, Masonic Lodge's are potential supporters...I know there are more, so people put your brain to work and start asking for help for the Matthews...God Bless the Matthews..
[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.
[MENTION=14853]kyle[/MENTION] Its human to doubt god and his methods. I do so many times too. I have experienced that some are not blessed with the same things and circumstances as others. But the thing is, you have to find that one differentiating factor, and that will give you so much of positivity, it will give you the strength to dismiss the skeptical thoughts.
EDIT: I second CMM, I felt happy that you are sharing how you feel, maybe you can process those feelings better once they are concretely put into words. I want you to know that I think of you guys when I have a spare moment and put a quick word to god to make things alright. And last but not the least, After every down comes and up. you will reach that crest, and when you do, you will look down from the top of the hill, and smile, nay beam at ezra and charley in your arms, with robyn by your side. Thats how I picture it.
Last edited by thetuxracer; 10-12-2010 at 01:30 AM.
kyle, i have never met your son and yet i think about him every single day. as a father, i literally have cried for you. for what you are going through and the thought of how you must feel. and just the thought of this happening to one of my own sons. i want to thank you for sharing your TRUE feelings and helping people understand what you are going through. you don't have to always be strong. everyone needs their time to just feel. and to talk. we are here to listen. always.
i also wanted to add how proud i am to be a member of m3. i have never seen a forum community pull together so much. it really is pretty amazing. it really is like having an extended family. and thank you tux for posting the updates for all to read. i usually get the emails when i'm not home and i know that i can just come here and read them instead of logging in to carepages. good work keeping us all informed.
Last edited by CandymanMike; 10-12-2010 at 01:09 AM.