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Thread: E is for Ezra

  1. #21
    "The Napoleon Dynamite of MMI" coloradoxmfan's Avatar
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    My Thoughts and prayers for you and your family.

    One1 said everything so eloquently.

    Peace,
    Daryn

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  3. #22
    Super Sweet Moderator thetoothfairy's Avatar
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    I have so many tears right now I can hardly see to type this.... I just read that Ezra's time is very, very limited.

    As I pray to god for Kyle and Robyn and family I ask that you join me.

    Thank you

    "Always remember your special and unique!"

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    Todays latest update:

    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.
    Lets pray for them. It should not be like this.

    Please do not kiss, or lick, the Monitor.

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  7. #24
    iPhone? More like MyPhone candymanmike's Avatar
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    thanks for posting the latest update here stefan. i have posted so much so many places over the last couple of days i forgot to keep mmi up to date. at this point praying is all we have left. i am afraid even if they find the drug it is a bit too late for that option at this point. what saddens me even more is that an email campain headed up by modmymobile's Jack, got the family awarded free admission to anything disney owns on the 23rd of this month. sadly it looks like ezra won't make it to see disneyworld dispite their generosity. i hug my kids more every day thanks to ezra. i can't even imagine what it is like for kyle and robyn right now. my thoughts and prayers are still with you guys. and little charlie too.
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  9. #25
    Super Sweet Moderator thetoothfairy's Avatar
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    I was going to post the latest update but didn't know if I should or not. If you read they can not let Ezra have the drug now or chemo because he is to weak.

    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.

    This just kills me to no end.... I will be honest with you all if we could let god have a choice right now between either Ezra or me.... I would go in Ezra's place so he could stay here....

    "Always remember your special and unique!"

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  11. #26
    iPhone? More like MyPhone candymanmike's Avatar
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    my son logen is in my lap right now sharing a cookie with me. he is 16 months old today. thats just 3 months older than ezra was when he was diagnosed. i can't imagine my life without him. or any of my boys. i have 3 boys (2 of them twins like kyle) so this has really hit home with me. even if i had never even heard of kyle matthews or known what a good guy he is, this would still tear me up inside. but, knowing kyle, it makes it so much worse. no one deserves what his family has gone through. especially not sweet little ezra. the only word i have for it is, unfair.
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    candymanmike give your little ones tons of hugs and kisses in honor of Ezra, and no this is not fair for Ezra.... and I feel the same way as you do about all of this as well.

    "Always remember your special and unique!"

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    Iv'e had my share of problems this past year, one of which was my middle boy last week being diagnosed with type 1 diabetes. He will be on insulin the rest of his life. He's only 19. I feel so blessed that there is a way for my son to live a normal life. However, compared to what Ezra is going through I feel blessed. Im not normally a praying person (maybe I should be) but I am praying for little Ezra and his parents.


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    Super Sweet Moderator thetoothfairy's Avatar
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    Kyle just posted this on his facebook

    A quick update, I'll write more tonight. This morning Ezra was "no chance" - and at the moment he's got a "slim chance."

    "Always remember your special and unique!"

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  19. #30
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    We are all praying for Gods speed in helping this little boy and his family.

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  21. #31
    Retired Moderator one1's Avatar
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    Cancer affects everyone in some form these days. Eventually I believe we will all have it somehow. The best thing you can do is FUND IT. Pay the researchers direct so you don't wait 5 years for 10% of your money to make it to the people at the lab. Find the lab doing the best and most advanced studies and fund them till you're broke. It will save your life one day. Between your cell phones, your sunlight, your genes, and everything in between you are buying yourself life.

    http://www.cancer.org/Cancer/CancerB...what-is-cancer

    How common is cancer?
    Half of all men and one-third of all women in the US will develop cancer during their lifetimes.

    If that doesn't scare the hell out of you nothing will. 50/50 with everything you do putting you at risk.


    Kyle, find your calling in life and get to it. You have paid your dues and are ready to finally live as you were intended, whatever that is designed to be.
    Last edited by one1; 10-19-2010 at 09:10 PM.
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  23. #32
    iPhone? More like MyPhone candymanmike's Avatar
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    update looks like there is still hope

    none to slim

    Posted on October 20, 2010 by Kyle Matthews
    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.
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  25. #33
    Super Sweet Moderator thetoothfairy's Avatar
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    ^ Just read the update also and still praying... I feel our prayers are helping! And I emailed the Vermont Cancer Center to let them know my concerns as to why I feel they should let Ezra still have the trial medication. And if Kyle needs us to do it again I will be more than glad to do so!
    Last edited by thetoothfairy; 10-19-2010 at 11:28 PM. Reason: edit

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    The praying is helping us all who care for this dear boy, bringing us all together to help celebrate life and living. A tear comes to my eyes when thoughts of the hardship that this little boy and his family are going through, and I can't get them out of my mind. Sending much love and prayers.

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    ^ I know what you mean... they are on my mind all day long. I feel so sad for them. I have tears often during the day.... I do not know how they are doing it. They are special people and I pray for them.
    Last edited by thetoothfairy; 10-20-2010 at 12:56 AM.

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  32. #37
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    2 new updates. things are starting to look up a little more...

    got ahold of Bayer

    Posted on October 20, 2010 by Kyle Matthews


    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…
    an army

    Posted on October 20, 2010 by Kyle Matthews
    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.
    keep it going guys. ezra's army is making a difference! the site he is referring to for any who don't know is www.thematthewsstory.com
    Last edited by candymanmike; 10-20-2010 at 10:32 PM.
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