A Plan For Recovery

The Plan

It's incredibly surreal to think that it was only a week ago that we had this healthy looking kid with a bum leg that we brought down to DeVos to figure out what was going on . . .

 . . . and then a week later we are pumping him full of stuff that we pray will kill this horrible disease.  Wednesday marked our first day of treatment for MacKale.  No wonder why this still seems like a bad dream that we'll wake from at any moment.  But nope!  This is our new reality.  Fortunately, between getting the official diagnosis on Friday and starting chemo yesterday, we were able to head home for a few days.  We all needed to see the little boys.  We needed to be home.  We needed to deal with the shell shock caused by the cancer bomb that was dropped on our world.   We needed to feel normal, if only for a few days or hours.  Luckily, MacKale was able to attend school for a couple of hours Monday and Tuesday, and those days were awesome.  Despite his initial nervousness, when I picked him up, he was laughing and happy.  How could this happy go lucky kid be sick?

But then Wednesday, it was back to reality. We woke early enough to get the little boys off to school before we had to head down to Grand Rapids.  This was really important to me, as I know that they are feeling the stress of not having me at school with them.  I took for granted how fortunate I have been to sneak into the lunch room and give them a squeeze midday or spend a few chaotic moments before and after school chatting it up with them. I know, in my heart that they are in great hands, but it doesn't really keep my momma heart from feeling a bit torn in two.  I know Mike feels it too.  It's a tight rope we are walking, but we're doing it together.

Our appointment with our oncologist on Wednesday outlined our plan of action for the next nine months to year of treatment.  I love this doctor more than I can say.  She totally gets me and our need (ok MY need) to see a plan even if tentative, so that I can find some peace.  Which means Mike and Mac will have peace, because then I won't be a complete and total wreck.  In basic terms, MacKale will go through about 11 or so weeks of chemo treatment, followed by surgery on his leg and then another 4-5 months of chemo.  This is no sprint friends!  This is a marathon.  We are going to need all our strength and the support of our friends and family to make it.  But make it, we will!

Treatment Begins

With a plan in place, we began treatment Wednesday night.  Because the chemo that MacKale is getting this time around can be hard on his kidneys, it was necessary to hydrate him for a good 10 hours before beginning.  This proved to be pretty convenient because by the time the actual chemo began, it was late in the evening and he was able to sleep during most of the time that it was being administered and woke later than he usually does in the morning.  He was pretty miserable for most of the day.  He kept telling me he felt FULL, not necessarily nauseous, just full.  I suspect he just doesn't know what the sensation is really called and that's his best description.  Luckily, they pumped him full of some great anti-nausea meds, and he has thankfully dodged that bullet so far. At one point he woke up after a LONG stretch of sleeping and declared he had just had 'the most awesome nap,' but felt pretty miserable soon after again.  Later in the evening though, we were lucky enough to have his mood turn around.  He perked right up when his two babysitters stop by.  He even felt good enough for a bit of a little Wii tournament.  It was such a blessing to see him smile and laugh.  These girls have my heart let me tell you.  They broke away from their own midterm studies at college to come to 'play' with Mac.  God sends angels when we need them.  These sweet girls are proof of it.

Thank you Jenna and Erica.  

Some Peace

There is no doubt that this journey is going to be a trying one.  It is amazing how quickly things can seem to start to fall apart, how your life can seem to be spinning out of control and you can't seem to catch up with it.  At some point last week, Mike said to me that we needed to somehow get the news of MacKale out to our friends and family.  People were wanting to know what was going on.  I knew we needed to do something, but I just couldn't bring myself to write the words and didn't want him to see my anguish while I wrote it.  But then, I just did it.  I posted it on my teacher blog, because, quite selfishly, I wanted and needed prayers for my boys. Prayers where ever I could get them, from everyone and anyone.  And, thankfully, I got them.

I can tell you ,without a doubt, that God has been working overtime listening to prayers for my sweet boy and my family.  For the first time in a week, I was finally feeling more peace than I thought I would ever begin to feel again.  That was due entirely from the outpouring of prayers from family throughout the world.  Yes, I say they are all family, because if you have taken the time to consider MacKale in your prayers, you will always be family to us.  It is a precious, precious gift.

The road will be hard, but I still know with all certainty that God is good and God is bigger than you and I.  

We are truly blessed.  My friend Annie posted this on her blog, The Moffatt Girls, a couple of years ago.  At the time, I printed it off and kept is on my bathroom mirror so I would see it everyday.   It's been there for a couple of years, but was an especially gentle reminder for me this week as we prepared for the start of this journey.  

Please continue to pray for us, for healing for MacKale and for 'strength.'

Life Turned Upside Down

This post was originally published on my (Marsha's) blog, A Differentiated Kindergarten, when we first learned about MacKale's diagnosis as a way to solicit prayers for MacKale's Journey.  We soon realized that we needed to have a dedicated place to update family and friends.  So I created this blog for that reason.  You can follow MacKale's journey on Facebook , or sign up to receive and email when we update information.  You'll find both options in the side bar to the right.

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.

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.

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.

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

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.

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

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.

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.

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

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.

Then life happened!

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!

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.

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.

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.

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!

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.

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.

Thank you friends!