Our Reluctant Home Away From Home

In the month of October, sixteen days were spent in the hospital.  Sixteen!!!  To say that DeVos has become a second home, our home away from home, is both a blessing and a curse.  We are so blessed to have the skill, the care and the comfort of experts and professionals that come as part of the package of being at DeVos---they are priceless.  And the building and facilities, are truly amazing.   But sixteen days away from your home  . . . your friends . . . your dog . . . your brothers . . . when you're a grown up, it's tough.  When you're 11years old, I'm sure it can feel like a curse.  We're back at the hospital again this week.  Week two of a three week in a row cycle, and it's the first time that MacKale actually said, 'I don't want to go!'  He's generally pretty resilient and doesn't complain much.   He's more likely to withdraw and say nothing than complain, which quite honestly, I'm not sure is better or not.  But last week after coming home from his first round of Methotrexate, he was feeling good.  He did all the things that we normally do and more.   He told the docs he needed to get out of the hospital and home.  He had a game to go.  His soccer team was playing their last home game, and he wasn't going to miss it.  It was fabulous!  Cold! Rainy! Miserable!  But fabulous!

Despite the terrible weather,  MacKale stayed toasty, warm and dry thanks to a borrowed deer blind.  Regardless of the weather though, it was so good to see his team playing again.  MacKale kept on telling me, 'They've really improved so much mom!  They're playing great.'  It was a happy reunion for him to see them for sure.  This IS his team.   Despite everything . . . these boys will ALWAYS be his team.  I'm so proud to have MacKale call each and everyone of these young men his friend.

I received a card from the team's parents that I keep my planner so I can read it often, because it just means so much to me . . . they wrote:
"You have family.  You have friends.  Your have a team.  Behind you in your endeavors and challenges.  We are all here for you now and forever."  

We love you too Cadillac Thunder!



He felt so good and, despite my dreading the horrible conditions, we even took him and the boys Trick or Treating!  It was wet, and Mike nearly dumped him a couple of times out of his wheelchair, but we had fun.  He kept feeling good. He had friends over, got his braces off (This will be a great help with mouth sores caused by the chemo.), went to school and even got in trouble for picking at his brothers in church...that's how I really knew he was feeling better.  And perhaps that's why, in addition to a million other reasons,  he didn't want to go back to the hospital this week--he felt good . . . things seemed good . . . so, of course, returning back to DeVos for chemo wasn't really high on his list of 'must dos!'

But if you're gonna kill the cancer, you need to have the chemo.

So we dropped the little boys off to school on Wednesday morning and MacKale and I
headed back down to DeVos . . .

across the bridge and up to the 10th floor to the infusion clinic.  Each time we go, we have kind of the same routine.  We check the question of the day . . .

(Mac usually gets these right.  I'm usually always wrong.  I think it's from all his years of reading everything that Nat Geo publishes for kids and from watching Wild Krats when he was little! By the way, I think the answer was five!)

Then it's blood pressure, temp and weight and height.  I don't get why they check his height every time we go in.  I mean he was just there 4 days before.  I can't imagine he's gotten taller or shorter in that amount of time but . . . who knows.

 I hold my breath for the weight, though.  MacKale is a solid kid.  I mean, he could eat before all this.  But now,  I work like a dog trying to fatten him up.  That first round of chemo did a number on his weight. and we have slowly been inching our way back up to a reasonable number.  Until then, he is getting a reprieve from my nagging about vegetables and  gets to eat whatever he is willing to put in his mouth.

Then we get our exam room and wait for his nurse to come access his port and get his IV started.  Accessing a port can be somewhat traumatic for cancer kids I'm told.  This is just another blessing that we count in this journey.  Because MacKale has had his port for hemophilia since he was 5 years old, accessing his port has never been a problem.  We were so fortunate that first of all, he has had one, secondly, that we didn't have to wait for an additional port surgery to get started on chemo.  We were able to start chemo right away.  And thirdly, we are thankful that we hadn't already removed his port.  MacKale had been self-infusing this summer and before he was diagnosed with cancer, we were making plans to have his port removed since he had started administering factor by himself through his veins.  We waited!  HUGE blessing!

Some kids with cancer come in to the clinic on an outpatient basis, but not kids with osteosarcoma. Once their port is accessed and their IV started, they are admitted and head to their room as soon as it's available.   The first 12 hours we are generally in 'hydration mode.'  No chemo . . . just a lot of fluid while we get his body ready.  Sometimes there's some 'events' that we can attend or take part in on those days that will make the time go by faster.

This week is the first Wednesday of the month, so volunteers from John Ball Zoo come with a few small animals.  This little fella was truly a 'velveteen rabbit.'  So sweet and soft.

And then there was this little darling . . .

no it's not a hedgehog . . .

but a Tenrick.  Don't ask.  I had never heard of them, but once again, Wild Krats had done an episode on them, and MacKale remembered everything there was to know about them.  (I need to watch more TV!)

Then, while he's feeling good and just getting fluids, I usually make him do some homework.  (I know, I'm so mean!)  But I'm just never sure when he'll be up to finishing it anytime in the next few days.  I totally get that it would be so much easier to just be in class with his friends completing his work.  It's NOT fun having to learn and complete assignments on your own when you're a kid that thrives on social interaction.   He does the work, but I know, he'd rather just be at school and in class.   In this case, I'm not ashamed to tell you, I totally bribed him.  I had pre-ordered the new Diary of a Whimpy Kid book, it had JUST been released the day before and had it with me.  I told him I would give it to him as soon as his homework was done.   Needless to say, homework got done!

 It was a busy Wednesday at the hospital though.  We also ended up with Star Wars visitors on the floor.  I can't even tell you how many little squeals of delight I heard.  We have kids older and younger than MacKale on the floor.  But I can guarantee you, even the parents were having fun with these guys.  That little R2D2 was completely remote control.  It was amazingly real.

My favorite though was Chewy.

It is wonderful to have these distractions for kids who are so sick and going through so much.  DeVos does a wonderful job at redirecting little ones, so that for a little bit, they can forget all the other not so fun stuff going on in their lives.  Is it horrible to have to be at the hospital? YES!   But they do the best job of making something horrible, at least sometimes bearable for a little bit.  And maybe even a little fun.  And they need a little fun because, as soon as the distraction is over and, in our case, hydration was adequate, it was back to reality.  Back to chemo . . .  and with chemo comes work. The kind of work that means trying to NOT be sick, making yourself drink and move . . .

 and be pleasant when you would just rather crawl into bed and sleep until it's all over.  But wait!  You can't do that, because there are machines going off . . . and buzzers . . . and with all those fluids going in, well you're waking up every hour to let them get out.  It can be utterly exhausting! Which means the rest of time you're there, it's often less fun and games and more like this . . .

and not so much fun.

But with the help of family, friends, community and the grace of God, we are working our way through our journey.  We still have such a long long long way to go, but  we continue to put one foot in front of the other, with a whole lot of faith and a little humor.

We try really hard to find the fun in whatever comes our way, and I kind of think that God has a bit of a sense of humor as well.  For instance, we were warned about all the side effects of chemo, but apparently God thought that MacKale should have the  sensitivities of smell and taste of a pregnant woman as well.  He not only has weird food cravings (Nothing but dutch apple pie, glazed donuts and sausage egg mcmuffins this week.  But never fear, it changes from day to day.  He'll hate those things next week!) . . .  but also whatever I eat, smells disgusting to him.   .   . anything.  This is what I get to look at if I try to eat in the same room with him.  Apparently, I stink. He's nothing if not subtle.

We cherish these opportunities for laughter and fun.  It makes these days so much more bearable. So while I ask for you to pray for God's grace in healing MacKale, I would like to also be so bold and a little selfish to ask that you add another prayer.  Please pray that while we continue this fight and this journey as a family, that we find lots of opportunities for joy and fun and laughter.  Our faith will sustain us, but laughter and joy will help keep us from losing ourselves in worry and fear. . .and it makes the time go by just a little bit quicker until we can get back to our 'real home.'

An Unlikely Act of Love

If we've learned anything in the last short month, it's that signs of love come in many forms and from many places.  Cards, casseroles, hugs and phone calls have provided support and strength in these dark days, but the one of the greatest demonstrations of love and friendship came last week simply in the form of a haircut.

Chemo patients don't generally get a choice.  When chemo invades your body, in addition to killing the 'bad cells,' they generally take some victims along with them.  One of those victims is your hair. When Dr. Mitchell spoke to MacKale about all the side effects and what he would experience with chemo, she made it clear that his hair would fall out.  There wasn't really any question about it. It would take two to three weeks after chemo started, but it would start to go.  MacKale never seemed really upset about it.  He'd met plenty of cancer kids at The Hole In The Wall Gang Camp when he was a camper there, and he knew that it was kind of part of the deal. But he never complained.  He kind of just took it in quite resolve like he has taken most things in life that he had been dealt . . . hemophilia . . . now this.  It was MacKale that explained to MaGill and McCoy that he had cancer and would get chemo and that chemo would make his hair fall out.  His ability to stay calm and matter of fact made telling them so much easier.   That doesn't mean that down deep, it was something he was happy about . . . it doesn't mean that deep down he didn't worry about how his peers would react . . . or if he would be self-conscious . . . or not look like himself . . . during those quite moments, when he was very much withdrawn, I'm sure those were some of his thoughts and fears.

Mike had told him from the beginning that he when the time came, he would shave his head with MacKale.  If MacKale was going to lose his hair, then by gosh, Mike wasn't going to let him go through it alone.  Then MaGill said he wanted to  . . . and our priest . . . and our friend Matt Bell . . . and things kind of started to snowball.  Where my comfort level would have been to privately go and have MacKale's head shaved quietly with no one around  . . . make it as uneventful as possible . . . not to draw any attention to the fact that he's losing his hair, that wasn't Mike's style and quite honestly, it wasn't MacKale's either and it wasn't what MacKale needed.  Mike was determined that if this unpleasantness was going to happen, MacKale wasn't going to be alone and he wanted to make it as fun as possible.  Yes, hair was going to fall out and he was going to be bald . . .but by golly, they didn't have to have pity party about it!

Much like love, God sends us angels in the unlikeliest forms, too.   Our angel for this milestone in MacKale's cancer journey came in the form of our dear family friend Bill Cinco.  If you live in Cadillac, you know Bill.  He has owned Trend Designers for years, is an active member of this community and the sweetest man you'll ever meet.  MacKale and the boys have been getting their hair cut at his salon since they were teeny.  He made it very clear to us that when the time came, he would open his doors and be there for us . . . razor in hand.

Now we just needed to wait for nature to take it's course.  It didn't take long.  One night last week,  MacKale yelled for me to come into his room before bedtime.  He and Mike had pulled out a handful of hair. The next night he could barely sleep for little hairs falling into his eyes and nose while he sleep.  It was definitely time. And so plans were made.  We would meet at Trend Designers on Sunday and if anyone wanted to join us, we threw it out there . . .  never realizing it wouldn't be just the few of us.

You can't even imagine the whooping and hollering at our house when MacKale's soccer team scored the first point in this event.  Team-mate Ethan and his dad, one of our team's coaches, shaved their heads Saturday nigh,t because they couldn't make it Sunday!  They wanted MacKale to know they were behind him.  I cried then, and as I sit here and write this post, it still makes me cry.  It was such a wonderful surprise and an amazing gift.

And I quickly realized, what I thought was going to be just a couple of our friends coming together to support MacKale . . . became something a more . . . and more amazing.   Bill may have gotten a bit more than he bargained for though.  Thankfully, more angels came through for us . .  . Tara and Amanda, stylist from the salon that have been cutting the boys' hair forever,  took time away from their own families to come help, too.

My job was to try and get everyone's picture. I tried my best, but as MacKale said, it was chaotic  and a little crazy but so much fun.  So chaotic, in fact, that I'm realizing I may have missed a few cuts (~sorry~).  In case you missed the fun though, I thought you might like to check out some of the action and meet some of these amazing men--both big and small--who went out of their way to make this part of MacKale's journey a little less lonely.

First of all, you have to understand, no event would be the same without a blessing from our favorite priest, Father Joe Fix.  He's blessed 1000s of motor bikes, backpacks and billy goats, but this was his first time for the 'blessing of the bald.'  And just to set the record straight so there's no doublt, I don't care who you are, our priest is the BEST !  He was first in line to have his own head shaved . . .'just don't touch the beard!'

And the little man of the hour, MacKale, wanted a seat in one of the first chairs as well.

Little brother MaGill wasn't gonna let MacKale go through this on his own . . .

and neither was little brother McCoy.

But that's not all . . . Mr. Bell . . . stepped up to the plate!

and so did his good buddy Colin . . .

And because you can't quite see it and I love it so . . . Colin's shirt says . . . 'I have a Crappy attitude about Cancer!'  LOVE IT!!!

More of MacKale's buddies -- Tucker . . .

and Ian.

Soccer buddies . . . Micah . . .

. . .  and Brady . . .

and Brady's brother Joe even shaved his head . . . what?!!!  He had only come to watch, but decided to go ahead with it, too. (Love that kid!)

More friends and family . . . Uncle Matt

and, of course, the ring leader . . . daddy!

Even more friends . . . Jerry and Mr. Darringon!

and others I missed . . .  Mr. Vandervelde, Gabe and Mr. Tulluto and everyone that came to cheer us on.

In the end, bald never looked so beautiful.

But believe it or not, it didn't end there.  Over the last several days, I keep getting texts and emails from family and friends who missed the event, but wanted to show MacKale their support, too.  They were cutting hair from all over the place.

From Iowa, Uncle Moff sent this . . .

from Colorado, Cousin Chris . . .

Cousin Jim in Iowa joined the fun and sent this . . .

and closer to home friends are still jumping in.

Check out Connor . . .

 . . . Justin . . .

 . . . Jonas . . .

and Tristan!!!

I can't tell you what each and every single one of these bald headed beauties mean to me and what kind of smile they have brought to MacKale's face.  I'm so proud of each and everyone of these amazing men who are setting such a great examples of friendship and support and for the younger men and boys who were there and, to their mothers (and wives)  who allowed them to support their friend by shaving their heads.  .  . I have not words.  You have my heart.  You are angels to me.

And to Bill . . .

and Amanda . . .

and Tara . . .

thank you for your skill, your time, your kindness, your love and your willingness to put up with this crazy, amazing day.  We love you to the moon and back.

It's Me MacKale! And My Great Weekend.

Hi Guys this is Mac.

I had a great weekend this week.  Friday night our school had an activity night, and I went as the Mad Hatter.

It was really fun to be able to act as if I could do normal things again.  Like when I was able to walk before and play around.  My friend Riley went as Alice so our costumes kind of matched.  All the people at the activity night wanted pictures and complimented us on our costumes.  Riley's dad was awesome about pulling it all together for us.

On Saturday, I was feeling great again, and I was able to go to the movies.  I saw Hotel Transylvania 2 with my dad.  It was pretty good.  It wasn't really that different going in a wheel chair.  It was just like I had my own seat that I could bring along.  I also went over to a friend's house to watch the MSU game.

It started to look as if MSU would barely pull away with a win again, but we know that later  it became a blowout.  They're gonna lose Connor Cook next year unfortunately, but they still have some good juniors and fourth year seniors that might come back and keep playing. So that will help.

Yesterday, Sunday, we went to church and afterwards went to the pumpkin patch.  I couldn't really do as much stuff there as much as last year, but I could still eat the doughnuts and apple cider which tasted awesome.

And Mr. Finstrom let us use the golf cart to go look for pumpkins, so that was good.

Finally, we went over to Trend Designers and there were about 30 people that showed up to get their hair cut with me or watch.  My hair had been starting to fall out and it was really annoying so it was a relief to have it done.

It was kind of crazy, but that's what makes it fun and it let me know who really cares about me.

It's been a really fun week and I hope I can have others like this.  I've got to try to enjoy the good days that I have and make the most of them.  I'm just glad I made the most of these days.