Life Turned Upside Down

My intention has always been that this would be a blog about teaching.  But, as so often happens, things happen.  Pictures of my family, my boys and my life has seeped into posts here and there.

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I get email from teachers and readers who share their lives with me and the best thing happens  . . .  friendships and connections are made.  Even though I may not know each and every one of you personally, I know so many of you that I feel like I have this HUGE, wonderful group of friends out there . . . and right about now, I’m counting on it whether it’s true or not.  I need my friends!

So I need to tell you this story.  But, I’m not particularly the best writer when it comes to this kind of thing.  I wish I had the gift that my friend Kristin from The Teeny Tiny Teacher has.  She writes and it makes you feel like she’s speaking just to you.  She makes you laugh, she makes you cry, but ultimately, you totally ‘know’ what she’s all about.  I don’t have that gift, but I hope you’ll listen anyway.

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Of course, many of you already know that I have a family with a wonderful man, Mike, and three noisy, smelly and dirty little buggers . . . my little Irish lads . . . the loves of my life . . . MacKale, McCoy and MaGill.

 

disney-2They really are the moon, the sun and the stars of my sky.  What you might not know is that MacKale was born with Hemophilia.

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Hemophilia is a genetic bleeding disorder.  That’s right!  He got it from me.  In a perfect world of hemophilia, my dad would have had hemophilia, which would make me a carrier and would then give each of my sons a 50/50 chance of inheriting this disorder.  As it is, my dad never had hemophilia and this has all happened by chance.  Mac was the only one of the boys to inherit it.  I’m not gonna lie.  It was the most devastating day of my life when we learned about MacKale’s bleeding disorder.  We didn’t know what to expect.  We were scared and terrified for this sweet baby.  But MacKale thrived.  He thumbed his nose at hemophilia.  It doesn’t define him.  It makes him strong!  He is active and smart (just like every mom believes of their children) and has a sweet personality.

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He never asked, ‘why do I have hemophilia?’ Never did he say, ‘why me?’

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When he was just 5 years old, he received a port which made his infusions easier for us and allowed him more freedom to do some of the things that every little boy loves to do . . . soccer, skiing, golfing, biking and wrestling with his brothers.

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From the time he was 6 years old, he attended overnight camp at the Hemophilia Foundation of Michigan‘s  Camp Bold Eagle  where he learned how to be a more independent with his treatment.  When he was 9, he was asked to travel to Connecticut to attend Paul Newman’s Hole In The Wall Gang Camp where he learned how to be a regular kid and ‘raise a little hell’ just like Paul believed every kid should.

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And then this year, he actually started to self-infuse . . . this is where he would locate his own vein and administer his own factor.

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I was so proud.  It was the biggest step he could make towards becoming independent with his treatment.  All we needed to do was make the arrangements and set the time and that port was going to become history!  His treatment center was so proud that they nominated him to attend a program called ‘Getting In The Game‘ in Arizona at the end October.  He was set to attend their golf clinic with his dad.  Life was AMAZING.

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Then life happened!

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We are a soccer family.  Even with hemophilia, Mac was able to enjoy playing soccer just like his brothers.  But recently, he suffered an injury to his leg that just didn’t seem to be getting better.  Normally, when this would happen, we would infuse him with factor, rest and it would get better, but after two weeks, that just wasn’t happening.  Last Tuesday morning, he woke in the middle of the night and he couldn’t even walk.  My greatest fear was that he had an inhibitor.  This is basically when the factor that you give hemophilia patients stops working and your body starts seeing factor as the ‘enemy.’  It’s bad.  So my husband travelled to our hemophilia clinic with Mac on Tuesday afternoon while I was teaching and they did blood work.  No inhibitor!  So they did an x-ray, because maybe he broke the leg. Nope!  Finally they did an ultrasound.  There was a mass on his tibia!

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If there is a blessing in this entire story, it’s the angel my family refers to as Dr. Deanna Mitchell.  This is Mac’s hematologist.  This amazing woman has known and cared for my son since he was an infant.  In addition to being a hematologist, she is, of course, also an oncologist.  In a matter of hours, she moved mountains to find out exactly what was going on with Mac. We left the little boys with their grandparents and travelled to Grand Rapids for an MRI at DeVos Children’s Hospital the next afternoon.  The next day we had a biopsy, then CAT scan, bone scan, echocardiogram, and audio testing.  By Friday, we had a diagnosis and a pathology report that confirmed our greatest fear, Osteosarcoma.  MacKale has cancer.

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My 11 year old, sporty, smart child  . . . is fighting the greatest fight of his life.  Our lives have literally been turned upside down.

How do you tell an 11 year old about chemo . . . about cancer . . . ? I’m a teacher, but honestly friends, I’m a mess.  I don’t have the answers and really don’t have a lesson plan for this part of my life.  When your baby cries because he wishes it was his arm instead of his leg, because everything he loves has to do with his legs . . . you cry too.

 

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When he cries because he’s afraid to lose his hair .  . . you cry too.  When his brothers cry because they don’t understand why, you cry.

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When people say, ‘they are sorry’ and it feels like they’ve already given up on him, even though you know they haven’t . . . you cry.  And when he’s not looking and you’re all alone, you and your husband cry . . . and cry and cry.  But mostly . . . you pray!

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I need you to know that I am a person of great faith.  Although I am fearful and I’m terrified, I am praying without question but with faith that God has my child in his hands.  I am praying for his recovery and his survival.  I pray for wisdom and understanding.  I pray that I will watch him grown into the incredible man I know he will be and that I will share a mother/son dance with him at his wedding.

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Because you are all my friends . . . and I feel like you are my family .  . . I am not afraid to ask you do to something for me.  Regardless of your religion or beliefs, if you are a person of faith at all, please, please, please pray for MacKale.  God is good in so many ways.  He has already given MacKale a clear chest scan and a clear bone scan an amazing group of doctors, nurses and support team as well.   We are truly blessed.  And  I just know that with all the prayer warriors out there, He will hear our prayers and give MacKale all he needs to fight this horrible disease.

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Thank you friends!

Marsha Moffit McGuire

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