Fight Like A Kid

Dear Matthew,

Where do I begin? The details are all in front of me; done with chemo, scans are clean and your port has been removed. Based on how you responded to treatment, the doctors don’t expect this to ever come back again. You’ll still have to go for scans every three months for a year and then a little less for five years but that’s part of the deal.
So this nightmare that began four months ago but feels like a year is behind you. Still, a part of me wants to try and make sense of what happened, to transfer thoughts and feelings into words. But we both know that’s not possible. Words like that don’t exist for people like us.

I can’t explain what we felt the day we found out that the simple surgery you had to remove what we all thought was a hyperactive lymph node, was much more serious. You were still sedated as we drove home in silence. Your dad carried you into the house, your grandmother went with him to get your sister and I sat in the car with your mom. For as long as I have breath, Matthew,  I’ll never forget the sound of pain that came from somewhere inside her. All these months later and I can still hear it.

A few days later your parents told you that you had (Batman) Jokers in your body and they had to be removed. I can still see you coming down the stairs and walking toward us with your shoulders slumped saying, “Tomorrow’s not going to be a good day, I have to go to the hospital in New York because I have Jokers in my body.” Then you went to sit with your sister and watch television. We couldn’t help but look at you and feel guilty for not being able to tell you everything. As you sat there and laughed at the TV, you had no idea there would be radioactive liquid to drink the next day, more anesthesia, a lumbar puncture, an IV line and a series of PET and CT scans. You had no idea you were going to be thrown into a world you couldn’t possibly understand. In your mind you were healthy, had a motor that never turned off, were enjoying the summer and had just celebrated your seventh birthday the month before. We were at the beach a few days earlier and you had plans for us to go back the following week. We never did but we will soon.

I know you must have been confused, Matthew. The truth is, we all were. Like you, we didn’t understand how this could happen. The thing is, adults eventually find answers to the questions they ask; but children ask questions that adults have no answers for. And so it was with you. The question of why had no real answer, at least not one that made any sense to you. So the first several weeks and beyond were especially rough for everyone. You see, there is no segue into this world of chemo. Your parents sign release forms that clearly explain the risks and side effects, both short and long-term. It’s not pretty but there are no choices. Time is not a friend. It owns you and you have to find a way to buy it back. You were given a schedule and a dozen different kinds of pills. Sometimes you had to take as many as twenty a day. Some tasted really horrible and no matter how small it was crushed or how much ice cream or pudding you put around it, it was hard to disguise. The pills were constant, as was the negotiation with you to swallow them.

So you take a happy and energetic seven-year old, pull him out of his world, tell him something is wrong with him even though he feels fine, stick him with needles, force disgusting mood altering pills down his throat, sew a port in his chest, put him in the car at 5:30 in the morning for a  four to five-hour round trip ride to the hospital, spend anywhere from 8-10 hours there, hook him up to drip lines that make him feel even worse, cause him to have sores in his mouth and a fever, then do it all over again the next day. What would any seven-year old do? Pretty much what any adult would do. They rebel.

You rebelled until you came to an understanding. Until those walls became your life. It took time and lots of tears, but you adjusted your old life to fit your new one. Not an easy thing for a seven-year old to do. By the time you were done, you took needles without complaint or support, walked into your treatments with an attitude, spoke your mind and asked your own questions. You came to accept what you fought and made us laugh in the most difficult moments.

When a doctor, in the middle of your treatment came into your room and asked if there was anything they can do for you, you would reply, “Yeah, get me out of this place.”

When you had to stay in the hospital for a few days and your mouth was swollen and filled with sores and you couldn’t eat and were hooked up to morphine and antibiotics and in obvious pain; the doctor would come in and ask you to rate the pain on a scale of one to ten. You would always say zero because you thought they’d let you go home.

You would never admit to pain or feeling tired or weak even when we knew your blood counts were close to nothing, even when the sores in your mouth made the doctors cringe. You pushed yourself to do things when you had no business being upright. When you were in between treatments and found a little more energy, you’d always want to go outside and play soccer or baseball or basketball. It was hard to watch you labor through those moments, to see you out of breath, to listen to you ask for a rest. But that was your way of fighting, of letting this disease know that it slowed you down but it hasn’t taken you out. So I wasn’t surprised. That’s just who you are. You don’t back down. You fight like a kid.

But you know, no one goes through this alone and you were no exception. I really don’t know what to say about your parents. Aside from watching their child go through this, they had to learn a different language, one that included medicines, tests, protocols, surgeries and scheduling. There was no class to take, no instructional video to watch, It was on the job training and they were relentless with you. When you pushed back, they pushed back harder. When you fought, they fought harder. When you cried, they held you.
They stayed together, asked all the right questions, developed relationships and never left your side. Not for a moment. Not once. They were amazing.
Your sister who is four years old was confused at first but eventually understood you were sick and made it a point of taking care and defending you whenever you were home with her. She took care of you in ways only a four-year old can and you understood in ways only a seven-year old could.

You know, I’ve always believed there comes a moment in any relationship when you find out all you need to know about someone. People will show you who they are without a word. That’s what happened here, Matthew. When people found out you were sick, they responded. People you know and some you’ve never met. They responded with prayers, and food and gifts for you and your sister. They didn’t ask if there was anything they could do, they just did what they felt needed to be done and made this difficult time more bearable. They called and checked in, letting us know they were still praying, asking how you were doing. So many people took time out of their lives to let us know they cared about you. We will never forget their kindnesses or their concern for you and our family. You can’t repay those gifts of love, you just count them as blessings and file them away in your heart.

When expressing our thanks, how can we possibly forget the amazing doctors and nurses at Memorial Sloane Kettering in New York. They deal with children who face uncertain futures every day.  Quite honestly, I don’t know how they do it but I thank God there are people like that in this world and that they were part of your life when you needed them most.

It’s safe to say that we’ve all been changed by this. None of us will ever be who we were before. How can we? We’ve seen and experienced too much. We’ve become vulnerable and more cautious about tomorrow. It’s hard to explain, just as it’s hard for you to put into words how this experience has changed you. But it has. I can see it. You see things differently and you’re more vocal about expressing what you see. You never had much of a filter but you have less of one now. In some ways you’re much more mature, not in a boring kind of way, but in a way someone who knows you has to see to understand. I think, in your own way, you see life differently. But then you’ve seen and experienced things many adults never have. You’ve grown up quicker than most seven-year olds and you’ve become even more sensitive to the feelings of others.  Thankfully you’re still inappropriate, which I appreciate and you think I’m the same way, which you appreciate. So it’s a mutual admiration society of two in that respect. We know it makes people around us crazy but that’s part of the fun, right? So let’s agree never to change in that respect, regardless of how old we get.

But you’re still you. Your cousin Jake reminded us of that. He was coming to visit you one day during your treatments  but hadn’t seen you since you began losing you hair and decided to have it buzzed. Your aunt prepared him before they walked in, telling him you would look differently and may not be as active as he remembers you being just a couple of weeks earlier. Your cousin listened to what his mom had to say and then asked the only question that meant anything to him. “But he’s still Matthew, right?”

Yes, Jake, he’s still Matthew.

God Bless you, Buddy.

 

76 thoughts on “Fight Like A Kid

  1. davidprosser

    What a story of sadness and of determination, of love and of success. How difficult this time must have been. No wonder your daughters pain was so deep seated. It’s awful to see your child suffer and it’s awful to see your child and your grandchild suffer too.
    I’m glad the prognosis is so good,the cure so effective. I’m sure the quarterly reviews will seem a minor inconvenience.
    Congratulations to the whole family but especially to Matthew.
    Hugs

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  2. Nurse Kelly

    Wow, George. What a beautiful tribute to Matthew and expression of your feelings… this leaves me with many feelings myself, because I lived this as well. You and I are so very fortunate to have the outcomes we are blessed with for our children… to even think of the alternative is the reason I do what I do by helping others in similar situations… maybe going down that path will start soon for you too, when you are ready, where you will find the difference you make in other’s lives helps to make sense of it all… even though that is never really possible. All the best to you and your family 🙂

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    1. George Post author

      Thank you, Kelly. Yes, we are so blessed and fortunate that our children have survived this ordeal. I think you’re right. I think giving something back might help make sense of it all. I’ve spoken to my daughter about it and when he’s ready I’d like to speak with Matthew. The next couple of months will be different for him. He will need to integrate himself back into school but I don’t expect that will be much of an issue. His recovery on the port removal is 4-6 weeks for sports so that’s going to make him crazy..:) but I want him to be more than a survivor. I’d like him to be an advocate and I believe he has the personality to do it. I just don’t know when he’ll be ready. So one day I’ll plant the seed and take my cue from him. Thank you for your concern and for always asking how he was. I appreciate it more than you know.

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      1. Nurse Kelly

        You are so very welcome, George. He really sounds like one incredible boy! I’m sure there are big things coming in his future! All the best to you and Matthew, and his parents as well… I have a bit of a partiality there, because there is no greater pain.

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      2. George Post author

        I know you understand and appreciate how much more can be written about the experiences you and I shared with these children we love. Stay well, Kelly and my prayers for your son’s continued good health.

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  3. Ann Coleman

    What a strong little boy your grandson is! And what a powerful tribute to all of you who stood by him during that horrific treatment. I can’t even imagine how hard that must have been on all of you, although your post lets me understand it much better than I would have otherwise. I’m so sorry Matthew had to endure so much, but so glad that he came through it as essentially the same wonderful little boy he was before, even if he is more acquainted with pain and suffering that any child should ever be. He was always in my prayers…

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    1. George Post author

      Thank your for your words, Ann but even more for your prayers. They meant so much so to all of us. Yes, it was a difficult time but my hope is that he becomes a stronger person from having had this experience. Hopefully one day he will find a way to help others through the same process.

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  4. Fourth Generation Farmgirl

    This is a beautifully written and moving account of life during such a dreadful experience for the entire family–but, especially for Matthew. Matthew is a picture of strength, fortitude, and perseverance. His inner light shines brightly. Thank you for sharing this uplifting story of a family who faced the unthinkable with grace and determination. Best wishes to all for health and happiness.

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    1. George Post author

      Thank you, Tonya. He is a very special little boy who now has a better understanding and appreciation of life than most seven year olds. I wish there was a different path to that realization but things don’t ways work out the way you hoped or imagined. I appreciate your words very much..:)

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      1. In My Cluttered Attic

        Your welcome, George. I’m starting to feel like my old self again, though, I would have preferred feeling more like my young self again, instead. However, I won’t quibble with rediscovering what my nose was for. Hey, it beats breathing through my mouth while trying to eat! :O)

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  5. DailyMusings

    George thank you for sharing such a personal account of what these past months have been like for you and your family. What a brave boy Matthew is. May he remain healthy for the rest of his life- he has endured at such a young age more than many ever do- and has done so with courage and strength. The best to all of you

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  6. joylovestravel

    Such a difficult thing to write and share George, but your words are incredible. I can’t imagine the pain your daughter, Matthew and the whole family went through – blessings and hugs to you all.

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  7. A.PROMPTreply

    Gooseflesh over here, George. An experience that took your breath away and writings that took ours away. Sending love to all of you…..different than you were before and yet very much still George and Matthew and on and on.

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  8. colorpencil2014

    George, you express all that happened so beautifully, so truthful and poignant and yet in a positive loving spirit. I want to say this in reponds and not as an advise not asked for: having dealt with serious illness in children both in our personal and working life, I can say for myself I never understood what the sense of it was. But the question I hold on to was : “How are we dealing with it ?” And I think Matthew and his wonderful family are dealing ‘with it’ in the best way possible. I am grateful Matthew is in the clear! Love and Peace from Ohio, Johanna

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    1. George Post author

      Thank you, Johanna. I think you’re absolutely right. Trying to make sense of something like this is a losing proposition and one that will sap your energy. It’s more important to use your strength to deal with this in as positive way as one can, which is what we all tried to do. Thank you again for your kind words.

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  9. Jodi

    Oh George – I thought I would make it through without crying, but I didn’t – not at the end. When Jake said, but he’s still Matthew. And when you described the sound that came from your daughter when you sat with her in your car – goosebumps. I have heard a sound like that once in my life – and I will never forget it and heard it again when reading your story. I am so glad Matthew made it through this and all the blessings you and him experienced along the way – cherishing the moments – of a grandfather and his precious grandson. Big Bear Hugs to both of you – if only I could do it in person!

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    1. George Post author

      Thank you so much, Jodi. I guess that sound that we both experienced is something that will never leave us and one that comes from a place I never want to visit again. Thank you for the virtual hugs, I keeping with one of your recent posts, they are willingly accepted and appreciated😊I will pass yours along.

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  10. Carrie Rubin

    Wow, you have really captured his, yours, and your family’s experiences in this difficult and painful process so poignantly. I’m so glad to hear they consider him cured, and I hope all his future follow-ups go well. What a lovely tribute to him, something he can look back on in the future.

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    1. George Post author

      Thanks, Diana. I think he likes me a little..:) This will certainly be a special Thanksgiving for all of us. I hope you enjoy a great holiday as well. My best to your family. Say hello to Bert for me…:)

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  11. Carol Ferenc

    Ah, George ~ I literally had to wipe my tears before I could finish reading. What an ordeal for Matthew, you and your family. You’ve so beautifully expressed the anguish and despair but also courage, devotion and determination in your tribute to Matthew. Your letter is sure to be a treasure that Matthew will cherish forever. God bless.

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  12. Helen Devries

    You all have every reason to celebrate….that poor child, showing such maturity; family pulling together to understand, to cope and together, with the inestimable aid of those doctors and nurses, to overcome.
    You wouldn’t wish maturity to come like this, but come it has, the back handed gift of tragedy
    I hope he can contain himself until he can enjoy sport again!

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    1. George Post author

      Thank you, Helen. You’re right, this maturity he found is a gift that should serve him well, but there are times I mourn the loss of his seven year old innocence. But I certainly can’t complain about the end result, which is the only thing that really matters. Thanks again.

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  13. Nancy

    Thank you for sharing this so that we can understand a little about all Matthew and his family have gone through. What a very brave and much loved young man.

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  14. Sue Tillotson

    Oh George – this was so incredibly moving. I will never forget seeing Jake race across the lawn when he saw his beloved cousin – they were locked in a bear hug that was so intense you could feel it across the yard. Matthew truly is one special kid – a chip off Gina Marie for sure! – and we’ll be remembering all of you at Thanksgiving, and giving thanks for his recovery. Love to all,
    Sue and Mark

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    1. George Post author

      Thank you, Sue. Yes, I love how those two little boys always greet each other. They’re inseparable when they’re together. It will be a special Thanksgiving for sure. My best to everyone. Say hello to Mark for us.

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  15. lagoodwi

    You managed to write something so beautiful when I didn’t even think there were words for it. He’s an incredible little boy and we are all happy continue to watch him grow into what I know will be an extraordinary man. God Bless him and his incredibly strong family.

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  16. aFrankAngle

    Awesome news … and cheers to Mathew for a valiant effort. Cheers to the grandparents who had to manage many, along with themselves. Make sure you save this because this post is something Mathew should read next year and the years to come.

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  17. cordeliasmom2012

    This post made me cry. There is absolutely nothing worse than a sick child. I’m glad at the beginning of the post that you said the doctors expect a full recovery and don’t expect a relapse. Otherwise, I don’t think I could have read the entire post. Thanks for sharing what was a horrendous experience for everyone involved.

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    1. George Post author

      Thank you. Yes we do, and I’ve been surprised how many people have reached out since I wrote that post about The Ninth Floor. This a a very caring community of people…:) thank you for reading.

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  18. sheldonk2014

    The parent thing is a very hard pill to swallow
    No one tells you what to do
    Almost everything is to fly by the seat of your pants
    I can’t begin to say…….
    I can’t imagine how you………
    Prayers and blessings
    Thank you for your like
    As always Sheldon

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  19. blondieaka

    Brilliant news George..the very best news and how poignant are your words,not make felt more because my daughter is a survivor and there is nothing worse as a parent or grand parent when a plaster or a kiss can make it better. You have one brave grandson …God bless and keep him safe. Carol 🙂

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  20. Nirodaigh

    Wow. I read this last night, and couldn’t quite decide what to say. Everything seems too trite, in some way but I’ll give it a shot because saying nothing is a bad option. What a brave little boy, what a brave family. What a dreadful disease this is. I wish him, everyone concerned, all the strength in the world, to continue battling it so courageously. And hopefully. They have the odds stacked in their favour because they have wonderful togetherness and support, I know it really helps. But it doesn’t take away the scariness. Wishing you all health and continued strength, together.

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      1. Nirodaigh

        Great to hear! Go Matthew. And again, loved ur post. So honest, from the heart. It brought tears to my eyes too. I have reared two ‘kids’ myself (still busy, do u ever stop?) but cannot imagine how difficult it must be to watch ur child go through such a scenario. Well done to all.

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  21. fillyourownglass

    George, this is one of the most moving pieces of writing I have ever read. I’m sitting here with tears rolling down my cheeks, so touched by your words and the emotions they convey. My heart goes out to your family, and I am thankful to hear the future looks positive.

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  22. BunKaryudo

    What a beautifully written post about such a heartrending subject. I can only imagine how terrifying this all must have been for a boy of seven and how quickly he must have had to grow up in response. I’m so glad that Matthew’s ordeal now seems to be over and he can get back to worrying about sports teams, pop stars and superheroes.

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