Wednesday, May 25, 2016

Do you 'Wonder?'

You know what it's like to want something desperately . . . to work a long time and very hard to get it and to have it just out of your reach . . . to keep moving towards it and to have it keep moving just beyond your reach?  That's kind of what getting to these last two rounds of chemo has been like.  We've been doing this since September 29th . . . 238 plus days . . . 90 plus nights away from home . . . fighting this beast!

We were suppose to start our second to the last round of chemo last week.  But the after effects of chemo from earlier this month were reeking major havoc on MacKale's body.  His platelets were low low low . . . so he needed a transfusion.  It was off to DeVos we go for liquid gold and hopes of renewed levels.  But then he developed nasty, painful mouth sores on top of low levels.  He could hardly talk, wasn't eating and then he decided to take a tumble in the bathroom.  Almost instantly,  he was sporting a brand new bruise.   I just knew that his levels still weren't bouncing back.  Mac felt it too.  So we checked his levels earlier than we had planned and sure enough . . .  Back to DeVos we went for a second round of platelets plus a side of blood.   And it meant . . . further delays . . . but at least it was time at home.

Sometimes you have to fight the dog for a spot in the sun . . . or just snuggle in.
The great news in all of this is that he never developed any fevers which would have landed him back in the hospital. . . no infections  . . . and with the extra doses of blood, platelets and several days of neupogen shots, he was able to build back his strength, heal his mouth and get a little extra physical therapy in before we finally started chemo Monday.  Plus . . .

 . . . work on the robot he got from his new friend Colton . . .

and start working on his short game with his brothers.

But now, we're finally here at DeVos, counting down our days until our final treatment until we can be, God willing, done with chemo.  But even now that we've started our second to the last round and we are heading toward the finish line . . . it's taking us longer than we anticipated.  MacKale's body just isn't flushing the chemo out the way it used to.  His body is tired, it's been poisoned and pushed . . . So that even now, when he used to be able to 'clear' the methotrexate from his body in 60 hours, it is taking sometimes a day longer (and hopefully not more).

Cancer has stolen 90 plus nights away from home over the last 8 months.  I could be very angry about that, and there are days that I worry about what that time of being separated will do to our family, but then . . . there are times that I know that cancer has provided me with some amazing gifts that I would never have if it hadn't so rudely invited itself into our lives.  Gifts like lessons learned and time . . . time with my 12 year old son that many mothers never get, and the chance to learn so much from him.  Granted, a great deal of what I learned was about MSU football, MSU basketball, how the draft works and which team was ranked in which spot during a particular week.  But beyond that, I gained so much more.

I'm a Kindergarten teacher.  Hazards of being one means, you tend to be well versed in all things "Dr. Suess," "Piggie and Elephant," and "If You Give A . . . " books.  You read with small children daily, but as time goes by, those small children tend to be someone else's child. Oh sure,  I read with my own boys when they were little, of course.  But there comes a time when suddenly, thanks the amazing ability of their teachers to instill a love of books in them, they read on their own and that sweet cuddle, bedtime story time that you once shared is kind of over.  MacKale, unfortunately, started reading independently early, so while he would read to his little brothers, those times of reading together for us were really cut short for me and him, or maybe it's just, I didn't appreciate those precious moments when I had them.  But I do now!

In early fall, when Mac was first diagnosed with osteosarcoma, one of his soccer buddies, Ethan, gave him a gift that included the book Wonder by RJ Palacios.   "This is a great book mom!  We read this in Mr. Main's class last year."  But the book went on his shelf  . . . forgotten . . . as life started to get hairy and scary and reading for pleasure seemed out of the question.  It had become difficult enough for MacKale to read for any period of time just to keep up with school.  He would fatigue easily and become too sleepy to keep his eyes open.  Where he used to love Language Arts, it had suddenly become a struggle because of the effort it took him to just have the energy to read.  So . . . I started reading his assignments to him.  Snuggled up in his hospital bed or at home on the couch, we read together . . . and it worked.

And then a couple of weeks ago, Wonder caught his eye on his shelf.  "Can we maybe take Wonder to the hospital with us and read it mom?  I think you'll really love this book."

I hadn't read it, but quite honestly, he could have asked me for just about any book to read with him and I would have jumped at the chance.  But this book . . . I just can't tell you what a gift it was for me . . . of gift of time with Mac, insight  and lessons learned.

So the premise of the story is that a young boy, Auggie, who has a genetic disorder that has caused his face to be disfigured.  He has never attended school until he enters Beecher Prep Middle School.  Personally, I thought middle school was one of the toughest times of my life as a kid. We are all so awkward stuck between being a little kid and a teenager . . . suddenly we are separated from our elementary school friends and it's a bit like being thrown into a big ol' fire.  It's hard to get comfortable, but being a kid that is somehow 'different' or who looks different . . . man . . . that's just adding to the anxiety of what middle school can often be for a kid.  So the story of Wonder kind of follows this boy's experiences transitioning into this world of middle school while looking so different from his peers.

So each night, before settling to bed, this has been the book we would read together.  At one point in the book, Auggie's teacher ask the students in his class to write what the precept, "Fortune favors the bold" means to them.  When was a time you had to be brave and by doing so, something good happened?

When we got to this part, Mac stopped me and said, "Mom, this is kind of like me having cancer.  I mean, cancer is horrible.  It's really not good at all.  But because I have had to be brave and have treatment and get pokes and come to the hospital, a lot of really amazing things have happened that might not have happened otherwise."  

Yea, Mac.  It's kind of like that.  Good things like having your friends, school and community come together and support you .  .  . good things like making a great new friend and getting to attend the Big Ten Tournament to watch him play ball . . . good things like making new friends at the hospital and getting to know the nurses, docs and other patients  . . . our 9th floor friends.  "Fortune favors the bold."  Lesson number one that I learned from Auggie (and Mac):  'Be brave!  You never know how great things could turn out if you do!"

Mac and his sweet girl friend.

And then at the end of the book, the author talks about kindness.

"Mom, this is the best part.  I love that 'be kinder than necessary' part.  I think that's so important.  I don't always want to do it and I'm not always good at it, but we really need to . . ."  

Man, I don't always feel like it either.  In fact, I have often failed miserably at it in my life, but if ever needed to see an example of 'kindness' I certainly have seen if from all of you this year.  Time after time . . . seemingly endless acts of kindness.  The kindness has worn off on MacKale . . . it has motivated him to look for ways to put a smile on someone else's face . . . even if it's a bit out of his comfort zone.   When Dr. Mitchell presented him with the challenge this week to 'go make some kids smile' by donning a Tutu for Tutu Tuesday, of course, he accepted the challenge . . .

World's Best Oncologist --Dr. Mitchell dons her tutu with McCoy and MacKale
and so there we were . . .

with the help of McCoy they walked the floor giggling and waving in the doors of the patient rooms . . .

. . . being silly and attempting to put a smile on someone --anyone's face.

Lesson Two from Auggie (and Mac): Even though you don't always feel like it . . . even though it might be tough, find a way to do something good for someone everyday.  Make them smile.  "Be kinder than necessary."

Honestly, we are so anxious to be done and we're trying to have the best attitude we possibly can while waiting impatiently to complete this round of chemo.

Puppy visits help pass the time.

Monopoly Deal tournaments . . . videos that make us laugh . . .

and walking (dancing) the floor and blaring music . . . all help make the time go by a little faster.

Some of these days can be very frustrating . . . and it's not always easy to be 'brave' and 'kindness' can be fleeting, but we are holding them as our goals and it helps to know, the end of chemo is close at hand . . .

 . . .only one more round.

Thank you for your continued prayers, for showing us your 'kindness' during all these months.  And in case you didn't already know it, you all really are a 'wonder' to us.


  1. Mackale - one more good thing that came from this - you've taught this lady more life lessons than anyone I know - and for that I say THANK YOU!

    I will carry this close to my heart....

    "Be Brave ~ Be Kinder Than Necessary!"

    Thanks for being....YOU!

  2. Way to go MacKale! He is so brave and knowledgeable. I saw him on TV last night, he is amazing. Prayers go out to him and all your family. Stay strong.

  3. We have all learned so much from your family's journey. MacKale and your family are making a difference in all of our lives.

  4. Thank you, MacKale and McCoy, for making me smile today!

  5. Thank you, MacKale and McCoy, for making me smile today!

  6. Thank you for sharing your journey with us! Love be kinder than necessary!

  7. Thanks for sharing your story with us. It is powerful. I am happy for you that you have seen the blessings amidst the trials. Do you know the song Blessings by Laura Story? I just finished reading her book, When God Doesn't Fix It. She encouraged readers to share their stories of struggle. You have done that here. Praying for you!

  8. Thank YOU for starting my day with this glorious phrase. . . Be Brave. . . Be Kinder than necessary.

    That's huge. It's simple but oh, so, IMPORTANT!

    I loved the pictures. I'm smiling just thinking about them and the littles who saw him at their door.

    Mac, you have been so brave through all of this. Marsha and all of your family members, too, have put on your brave armor and weathered a massive storm. So glad the end is in sight and this knight in shining armor is about to ride out through it.

  9. Love the tutus! Thanks for sharing the cute pictures and commentary. You all continue to be such an inspiration to the rest of us. Mac, you just continue to kick cancer in the butt!

  10. Marsha you are an amazing woman, Mom, wife and friend. You are strength, hope and courage. That's evident in each of your wonderful boys. Their greatness shines because of the example set by you. I love you my friend and with the grace of an awesome God, Mike, Mac, McCoy & MaGill will persevere.

  11. You are an amazing mother Marsha, doing a great job. What a fine example you are, teaching your children dignity and respect along a difficult journey. These are truly important life lessons.

  12. Such a beautiful post. You all inspire me! I love that you all have such faith and wonderful senses of humor! Continuing to send my prayers for healing and strength for you all. :-)

  13. You all have blessed me and my family!

  14. Well written Marsha. I have enjoyed your blogs! Thanks for keeping us up to date and I love the lessons learned from Wonder... and MacKale.... Be kinder than necessary. Thanks for sharing your journey.