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Thread: E is for Ezra

  1. #1
    iPhone? More like MyPhone candymanmike's Avatar
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    Default E is for Ezra
    Thanks for opening this thread...

    Most of you here have no idea who I am because I'm relatively new here and have been fairly silent in my time at mmi. But, I've been a member of modmymoto (a.k.a. M3) since 2006 and a moderator there since a couple of months after that. The ModMy family has always been a close knit community. Recently we at M3 learned of an instance where one of our own needed support. I take no credit for the following post. I simply copy & pasted it as posted by my fellow modder, moderator and friend Jack from M3. Jack is a well known and established mod in both the motorola and blackberry communities. Here is the original post. Please read through it and show your support!

    Thanks for your time,
    Mike

    One of our esteemed founders, Poetic Folly, found out recently that his little boy Ezra has cancer. Ezra is a very young little boy and he has had to go through chemotherapy. Chemo is difficult for an adult, I can only imagine how rough it is on a little child.



    I ask all of the members of M3 to show their support for Ezra by placing the picture below and the words "is for Ezra" just like my signature at the bottom of this post. This little guy is going to need all the help he can get. The very least we could do to thank his father... the man who gave us this great community... is to show our support for Ezra and his mother and father.

    Heres the pic:

    Heres the link: h**p://img17.imageshack.us/img17/8198/ezraj.jpg

    replace the ** with tt


    EZRA'S OFFICIAL WEBSITE
    Visit us on your sister site at www.ModMyMobile.com
    Follow me on Twitter @CandymanMike & on My Blog

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  3. #2
    Retired Moderator one1's Avatar
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    Yep, me and PF are both in a pickle with this tumors, cancer thing. I'm not going to change my sig, but I'm with him all the way. I'm guessing for him, but sure for me, the only thing that is gonna really help right now is a cure or a fix at least. I'm sure he will appreciate the support however.
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  5. #3
    iPhone? More like MyPhone candymanmike's Avatar
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    yeah it's not so much about the sig changes as the support. kyle's a good guy who deserves all the good juju people can send his way!
    Visit us on your sister site at www.ModMyMobile.com
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  7. #4
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    PF, and all his Family, have my support. There is Not a lot in live as important as our children. They are the future coming alive.

    Please do not kiss, or lick, the Monitor.

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  9. #5
    Super Sweet Moderator thetoothfairy's Avatar
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    I just found this link and my heart goes out to you both! Please know that my family will pray for your little one. Ezra is a darling little man! I am in complete shock at this time and hope little Ezra gets well soon! Please let me know if there is anything I can do for you both.

    Oh I am so saddened by this news.....

    "Always remember your special and unique!"

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  11. #6
    Retired Moderator A Retired Mod's Avatar
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    He and his family have my prays and support!

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  13. #7
    Super Duper Moderator blkcadi's Avatar
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    No doubt, praying for the little guy. So so sad indeed.

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  15. #8
    My prayers go out to your family Poetic. Good luck to Ezra in the battle ahead of him...
    [SIGPIC][/SIGPIC]

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    Retired Moderator bhz1's Avatar
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    Such a sweet little boy. Kyle, you and your family will be in my thoughts prayers.


    If I've helped you, you can help me by clicking on that Thanks button.
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    CHUCK-TASTIC battlecrushr's Avatar
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    im so sorry.
    hopefully will get better




    Please know we are praying Kyle (poetic_folly) and Robyn Matthews for your little one.
    You too blkcadi
    Thank You.

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  21. #11
    iPhone? More like MyPhone candymanmike's Avatar
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    kyle needs your help guys. i will keep my part brief, but here is what has happened.

    Ezra was diagnosed with stage 4 neuroblastoma on October 4th, 2009 at the age of 13 months. On October 6th we found out we were pregnant again. After weeks in the hospital and an initial round of chemo, in early November we were able to do our first ultrasound and already see Robyn was pregnant with twins. As the months progressed, Ezra went through 6 rounds of chemo, various treatments, and moving towards having the main tumor (above his left kidney) removed.

    On March 1st, Robyn and I went to her dr for her scheduled pregnancy checkup, and the dr told us she was 1-2 cm dilated. Her due date was July 21st – this was nearly 4 months early. We took Robyn straight to the hospital where she was on bed rest for 2 weeks, but those babies weren’t waiting in there, and on March 15th, at 26 weeks (3 1/2 months early) our twins Price and Charley were born. Price was 1lb 13oz, and Charley was 1lb 15oz. They both had multiple heavy complications, including level 4 bleeds in the brain, and on March 22nd, the twins’ 1 week birthday, God took Price back from us.

    Charley was still critical, and had many of the same issues as Price. He was rushed to All Children’s hospital in St Pete, who had better drs to handle the brain trauma. He received multiple surgeries, including having a shunt put in his brain, then removed as it wasn’t working correct, a new shunt put in, then another surgery to move that shunt. It’s now working great and will remain with him for life. He also had heart surgery to fix a murmur, which went well. Charley is now home! He is on a very low flow of oxygen (he should be off in a couple months) and has a G tube in as he can’t yet take a bottle. These are temporary issues which will fade with time, and before long he should be just like any other kid.



    Talk about a whirlwind of emotions. 2 weeks after Price died, on April Fools Day, 2010, Ezra had his neuroblastoma tumor successfully removed. His left kidney was fully involved with the tumor, and was also removed. He recovered well, and we spent the entire month of June living in a hospital for stem cell transplant for Ezra – in an isolated, HEPA filtered room. Charley was in the same hospital (and still is), only 1 floor away, so we were able to visit him often, although Ezra wasn’t allowed to leave the room the entire 30 days.

    The day before Ezra’s 2nd birthday we discovered he’d relapsed already, less than 4 months out of stem cell transplant. This means his neuroblastoma is very aggressive, and at the moment there is no cure. We’ve been through a couple options since then, but his cancer is still showing no response. There is a trial in Orlando of a drug called Nifurtimox which we are going to try – it has been shown to “prolong life” up to 2 years, in which time new developments could be made. If this trial treatment does not affect his cancer, doctors have estimated Ezra has 2-3 months to live.

    We are hopeful
    todays carepages update

    slippery slope

    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.
    and from kyle himself at modmymobile

    Originally Posted by Kyle Matthews
    I need someone who lives in Mexico. We have just been told we arenow ineligible for te Nifurimox trial, but it is supposedly available unrestricted in Mexico. Can one of youin Mexico check local pharmacies to find it? I will pay overnight shipping...
    thanks for reading. spread the word if you can. i have posted this on my blog and used twitter and facebook to spread it as far as i can.
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  23. #12
    MMi's "X" Member awesomeSlayer's Avatar
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    I feel bad for Kyle. I hoping that he gets better.
    Asking for help is different from being stupid. Fanboys can rot in @#$%!

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  25. #13
    Super Duper Moderator blkcadi's Avatar
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    This is such a sad situation. My heart, thoughts and prayers go out to Kyle and Robyn, but especially the little boys.
    As a cancer survivor (so far anyway) I can not begin to tell you how hard this must be for the Matthews.
    Pray, donate, don't just sit there, do something people, please.

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  27. #14
    Retired Moderator one1's Avatar
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    There are things in life we must go through to make us better people. The lord will never give you more than you can handle. For those who bleed from their hearts more than others, the rewards are always greater. I don't know what your destiny is Kyle, but it must be of some greatness to have this much test of faith.

    I offer the idea that had you been given three perfect children with no issues you would not be nearly as humble and close to god as you are knowing what you do now and what you've live through. A greater power wants you very close to them for reasons we cannot know. I'm sure however it is a measure of who he wants you to be.
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    Britney Spears of MMi Zeal's Avatar
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    This is terrible
    EDM

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  31. #16
    Super Duper Moderator blkcadi's Avatar
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    ^ I believe you one1. Very well said my friend. It is how I live.

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  33. #17
    iPhone? More like MyPhone candymanmike's Avatar
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    we did have someone in mexico check with a local pharmacy. they found out the drug was discontinued there early this year. it appears the only place it is available now is columbia, argentina and possibly germany. we have someone who is supposed to be checking for it's availability in argentina. it's turning into a wild goose chase though.
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  35. #18
    Even as someone who has lost multiple family members to cancer, i cannot even imagine the stress and pain he is going through

    I changed my sig to this now
    Last edited by whereswaldo; 10-18-2010 at 08:20 PM. Reason: Automerged Doublepost
    Name? whereswaldo
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  37. #19
    Super Sweet Moderator thetoothfairy's Avatar
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    I have been praying for this family since this all started. I have often wondered how they are dealing with this. And wonder why them and felt many times that it is not fair to them as this is any parents worst nightmare. I feel god has a plan for them and a good one. They are very special people with strengths that most don't have. God bless this family and hopefully make a miracle happen for little Ezra.

    I love that little boy! He needs our prayers and our love guys and gals! Also one1 very nice comment.

    I was very happy because I got my pray for Ezra bracelets today!

    "Always remember your special and unique!"

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  39. #20
    MMi's "X" Member awesomeSlayer's Avatar
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    I edited my signature as a prayer.
    Asking for help is different from being stupid. Fanboys can rot in @#$%!

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