Thursday, October 29, 2015

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 during those quite moments, when he was very much withdrawn, I'm sure those were some of his thoughts and fears.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.

Monday, October 26, 2015

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.

Wednesday, October 21, 2015

Don't Count Your Levels Before They Fall

Yea, so I guess you can't really count your levels and take a deep breath thinking that all is good.  That was a lesson learned the hard way.  Won't do that again.  My new mantra:  "Must stay vigilant.  Don't take things for granted. Never let your guard down. Keep praying!"  Have I mentioned I hate cancer.

Just when I thought we had turned a chemo corner . . . MacKale had his levels done last Wednesday and had a great day . . . even ate . . . and then Thursday came.  He hauled himself to school, because that is truly his 'happy place' once he gets there.  I'm not saying it's easy to get him there, because it definitely is not.  Mornings are the worst.  He usually gets sick in the morning, is tired and doesn't want to move, is nervous about going, but he got there.  But it wasn't long before I got a call of concern from the school.  He didn't look good.  He was acting sick.  They didn't want to bug us but . . .His school is so good to MacKale, and they are so concerned.  I know that having him there is not the easiest thing.  I know that they must be on pins and needles because I am most the time, but they have done everything they can to accommodate us and keep MacKale safe.  We love them for that.  Mike went and checked on MacKale, but he didn't want to come home so they struck a deal that MacKale could stay until lunch time and then we could come home and rest.

He slept all afternoon, was grumpy, cold, mouth sores were very painful, couldn't concentrate on homework and just NOT himself at all.  He wasn't drinking like he had been earlier in the week, tried to eat and ended up vomiting  . . . again.  Ughh.  He couldn't get comfortable, we tried a shower, bed, he felt warm . . . CRAP . . .  a fever!

Chemo patients know what a fever means. . . you're fighting off something . . . maybe a port infection . . . maybe something else, but at the very least, you're going to the ER to figure it out.  And that's where we ended up, too.   Mike rushed him in while I stayed with the little boys until Mike's dad could come and relieve me.  It was horrible.  I felt like the world's worst momma, and I know that's not true, but when you say your goodnight prayers and promise your little ones that you will come in and snuggle them up in the morning and that doesn't happen because you are heading to Grand Rapids and the hospital . . . it's tough.  I honestly feel like the little boys get nothing but disappointment and broken promises from me lately.  All attention is on MacKale. Guilt is an evil, evil thing, and being a momma with a cancer kid is a tricky balancing act.

Our local hospital was great.  This is where we came to infuse MacKale as a little guy before his got his port.  They have always been very accommodating at working with our hemophilia docs, and the same was true for working with our oncology docs.  They got MacKale stabilized and ready for us transport him down to Grand Rapids.

While it was disheartening that he had to end up back at DeVos, it was also a relief to see him come back to life.   Even when he's poked and prodded, he's polite and compliant and finds things to occupy his mind (sports!) if he's up to it.

By Thursday afternoon, he was drinking and would pacify his momma with a nibble here and there.

He even decided he might be up for a little adventure to the game room where he proceeded to beat me, even in a wheel chair, at basketball.  

Truth is, he wasn't gonna leave that room until he buried my high score.  He may be just a little bit competitive. . . . just a little.

By Friday, he was eating . . . I mean eating and by Saturday afternoon, MSU football time . . . he was asking for BBQ Chips!

 I went out and bought three different bags.  He ate two (I ate one--shhhhh it's so NOT on my diet!  And I totally DON'T care!).    That game . . . that game people. . . that game was the best medicine ever.  MacKale loves MSU and everyone on that floor knew it.  We had nurses running in at the end and people texting MacKale  (It's bad when your 11 year gets more text on your phone than you do!  But it was ok with me.) . . . it was crazy fun, and I finally saw a glimpse of my boy coming back to me.  My heart was full.  It was a good day, even if we were in the hospital.

And so it has been since the boys came to get us and return us home on Sunday.  He's eating--A LOT. He's the same old funny, goofy kid we know is in there even when he doesn't show it when he's sick.  He's been to school three days in a row.  He is so happy when I pick him up.  He loves his school, his teachers and his friends. And while everyday with MacKale is a blessing, these happy days are a special blessing indeed.  I won't say the chemo fog has lifted.  I will just say we have enjoyed several good days as a family.  These days are truly a gift from God, and we owe it all to Him.  These days sustain us.

We head back to DeVos next week for more chemo.  Our friends and family across the world have been an amazing source of prayers, and I am so grateful for this.   I know I have asked it so many times,  but I will continue to remind you, to nag you even to please continue to keep us in your prayers.  Pray for God's healing grace for MacKale and for strength for our family.   Asking for help has never been easy for me,  but cancer has shown me I need you all desperately and love you all so much for lifting up MacKale.

Thursday, October 15, 2015

Lifting The Fog Of Chemo

Everyone tells you the horror stories of chemo, but until you live through it, until you watch your child live through it .  .  . you really have no clue.  I had no clue.  I had no idea how HARD it really is. Even though we escaped from the hospital Saturday, we've been feeling the effects of chemo everyday since.  It's not fun and it's not pretty watching your active, happy-go-lucky 11 year old slowly wither away, because he won't eat.  Seriously, how can someone actually survive on such little food intake?  Suddenly, food is the center of your life, and you cheer over an empty dish of applesauce or a few spoons of Fruit Loops consumed.  Even if it comes right back up a half hour later.

The stress of seeing him miserable for so long is draining both emotionally and physically.  As a parent, you feel so helpless to give him comfort or even answers as to when it he'll 'stop feeling so horrible.'  At one point this week I remember telling Mac that I would give anything if I could be sick for him.  He stopped moaning and looked at me with big eyes, 'No, don't say that Mom.  I would feel terrible for you.  I don't want you to feel like this.'  Yes, we have meds for the nausea, but they don't always do the trick and we've become quite accustomed to adjusting quickly to the faint cry of  "Mom . . . I'm gonna be sick."   I tease him that his new best friend is his pink puke bucket.  She, 'Pinky,' goes everywhere with him . . .

Even when he doesn't need her close by, we often find him comforted by her close proximity . . . on his head.

This kid is such a goof.

It's these moments that that keep us whole.  These brief glimpses of our funny MacKale let us know that he's still HIM and we are still US.

He continues to inspire me by his ability to grin and move on.  Although he was so nervous about going, he made up his mind to go to school Tuesday for the last two hours of the day.  He couldn't quite make it to get there in time for his morning classes . . . 'morning sickness' you know.  I keep asking him . . . are you sure you're not pregnant Mac.  Pregnant ladies vomit a lot in the morning too. "MOM!!! No!"

We got past the morning and packed up and headed for school in the afternoon when his stomach had settled. Did he need me to wheel him down to class?  Heck no!  Away his went . . . independent little cuss.  I can't imagine where he gets that from?

He had a great couple of hours . . . until the last 10 minutes of the last class when he got a bloody nose.  Ugghhh. Really!?  I anticipated vomiting.  We both did.  In fact, one of our sweet friends even delivered a collapsible puke bag for him to take in his pocket to school . . . just in case.  (Thanks Mrs. Reagan!)  I still prayed HARD that he would not have to vomit.  I just wanted him to have a good experience so desperately, and he did have a good day, but still . . . couldn't he catch a break?  I told him the bloody nose was completely my fault.  It had to be. I only prayed for no vomiting.  I completely missed the bloody nose thing.  I'll do better next time.

It's these unexpected, unknown side effects and changes that knock us back down, just when we think we might be moving forward.  A forty-five minute nose bleed had me frantic not knowing if this was a hemophilia thing or an oncology thing.  We can't just have cancer, we have to make it REALLY interesting by throwing a bleeding disorder into the mix, ya know.  But we pick ourselves up and start again . . .

But finally yesterday,  a week after we started his first dose of chemo, I think we may have turned a corner for this round.   MacKale moved beyond Fruit Loops and requested Chicken Nuggets from McDonalds.  I know, disgusting right?   Yes,  he requested only McDonald's nuggets.  He also reminded me that they are made of disgusting pink goo, but he still wanted them.  I don't care.  He could have asked for a Dilly Bar and a packet of ketchup to eat, and I would have gotten it for him. He ate two nuggets, apple sauce AND, be still my heart, spaghetti-os and finger jello.   Only little bits of each, but enough to make me one happy camper. Luckily, he keeps drinking for me.  Of course, I have my suspicions that he drinks so much only to keep me from nagging . .  . just a hunch. Regardless, I'll take it.

It was a good day though.  He ventured outside in his wheel chair to hang out with his Papa and Dad, sat with me and did homework, and spent sometime with his brothers doing what brothers do . . . playing Legos (Thank you Angel Deedee ), singing and cracking jokes.  It's not chasing a soccer ball around the house, but after a week of being disconnecting to the little boys because he felt so miserable, it was music to this momma's ears, and a rainbow to the end of our dreary, foggy chemo week.

We count these days and every day, good or bad, as a blessing because we are together.   We continue to put our faith in God's hands and know that He will continue to lead us as we move through these days.  God has blessed us with all of you who continue to pray and keep MacKale in your thoughts and keep God working overtime.   We are so very grateful.  (Marsha)