Thursday, December 17, 2015

We ARE the Vikings!

Sometimes, there just aren't any words to express how you feel, or your feelings are so big and so overpowering they just don't make words that big.  You know that whatever comes out, it's just not going to be enough.  Whenever I think of our community, it seems that way.  I am currently struggling with MacKale's shirt post, because I don't feel like I have the right words so it sits half finished.    And then this post feels much the same way.  I have so much to share, but conveying the magnitude of what I feel, is often a struggle.

Photo from Cadillac News

Mike wrote on his Facebook page: "What does it mean to make a difference . . . this is how you do it!"

When people ask what we need, we always say 'your prayers.'  But quite often, it is easier for other's to see what our needs are than for us.  This week, our Viking family, the athletic department, boosters, coaches, staff, students, fans and players of the boys' basketball teams knew exactly what MacKale and our family needed.

Coach Ryan Benzenberg
A couple of weeks ago, the Viking's varsity coach, Ryan Benzenberg, contacted me.   He relayed to me that his varsity team had been following MacKale's journey and was praying for our family.  They wanted to invite MacKale to be an honorary captain for the team at a home game in a couple of weeks.  Although it's always hit or miss how Mac will feel, we looked at his chemo calendar and based on the type of chemo he would be getting around that time, we thought the timing would be perfect.  He would be in between two doses of the 'lesser of two evils' chemo, and he usually felt pretty good.  It was a great event for him to look forward to . . . to work toward.  You don't realize how easy it is to just let life happen all around you when you are in cancer treatment.  You could easily take treatment behind your closed hospital door and when you come home simply sit and shut out the rest of the world.   But MacKale hasn't typically worked that way.  He loves these little goals to keep him moving forward.    So the basketball game was always in the front of his mind.  When we were in the hospital last week, he did everything he needed to do to get out in record time so he wouldn't miss it.  It was important to him.

What we couldn't anticipate was how hard a virus he picked up the first few days of December would be working on him.  He has literally been fighting it for nearly two weeks, and Monday night, it decided to rear it's ugly head in the form of a low-grade temperature.  Now a low grade temp to a normal kid is no big deal.  For a kid with a port in their chest, however, it can be a sign that there is a dangerous infection brewing.  We had to rule out a port infection so away we went to the hospital.  Usually a temp means that we will be heading back down to Devos for admission and Mac knew this.  He saw me packing our bags in anticipation.  He was, of course, devastated.  His disappointment weighed heavily on me, but through our tears of disappointment, we said a little prayer and headed into the ER to get blood draws and levels checked.

Our little prayer was answered, and  it ended up that there was no infection, his levels were very good and we could go home to sleep in our own beds.  He rested and felt pretty punky for most of the next day, but no temperature so he wanted to rally for the game that night.  I knew he wasn't feeling 100%, but I also knew, that unless he had a temperature, there would be no keeping him home.

And I'm so glad we made it, because not only were the Vikings in full Team MacKale gear, but all of the Ogemaw Heights players were too.

Falcon Coach Eric Spencer

You want to talk about a class act basketball team, the Falcons are it.  Coach Eric Spencer made it a point to come over and greet MacKale and our family.

From beginning to end . . . it was a magical night for all of us but especially for MacKale.

He was part of the captains meeting.
Captains and Referees Meet
And was able to sit right up front with the team to catch all the action.

Each time a player entered or exited the court, they made sure to acknowledge him and his brothers with a smile, a tap of the hat, or knuckles.

Those 'big high school boys' didn't have to . . . but they did it.  And my boys thought they were pretty awesome.

Just like their high school classmates didn't have to gear up in orange, but they did it.  And my boys thought those big kids were amazing.

With so much noise that pollutes our attention with negativity about kids today, I feel so compelled to tell you that I am proud to have my boys emulate and look up to these young Viking men and women. They were kind and generous with their time, and they made MacKale feel pretty incredible despite feeling pretty rotten physically.  It was selfless and genuine, and I know what a blessing they are.  That's something we can't take for granted in our community.  They are SUCH an amazing asset to have.

Viking #22, Tyler poses with MacKale.

So after the game was over, Mike and the boys were invited into the locker room for a little post game chant, and as I waited outside, a woman approached me and introduced herself.  She mentioned that her son's name was Matt Costello, and he plays for MSU's basketball team.  His cousin, Keagan,  plays for Cadillac, so he had heard about MacKale and was wondering if he could Face Time with him.  I'm not going to pretend that I knew who Matt Costello was at the time.  Honestly, I wasn't really confident that MacKale would know who he was either, but when MacKale came out from the locker room, Matt's mom approached Mac and said, 'My son Matt Costello plays for MSU and would like to Face Time with you.  Do you know who he is?'  Cool as a cucumber MacKale says, 'Yea, I know him.  He's number 10.'  Don't ask me where he stores this information, numbers and stats about players from sports, because it boggles my mind.  I just have no idea. But I do know who Matt is now, and I won't forget yet another young man that went out of his way to reach out to MacKale.
MacKale Face Times with Matt Costello.

The whole event was really so remarkably well thought out.  The organizers considered every detail to make it special, not only for MacKale, but for MaGill and McCoy and Mike and I as well. At one point I looked over at MaGill with his eyes as big as saucers and he just said 'Wow Mom.' McCoy said, 'I know!  Right! We are so blessed aren't we?" And then he said,   "Why are we so lucky?"

I don't have an answer for McCoy, but I know that he's absolutely right. . . despite everything, we are so very blessed because honestly . . . this level of support is nothing short of a miracle.   Many kids and families face cancer alone.  They don't have help, they don't have a school family or community to support them.  It's uncommon!  It's extraordinary!  It IS a blessing.  We see kids every week at the hospital that close their shades and hide away from the world, because, quite honestly, cancer treatment is horrible.  But MacKale is out there.  His shades are up.  He's interacting and smiling because "it takes less muscles." He's facing his journey head on . . . even on those days when he doesn't really feel like it and we have to pull him 70 % of the way and it's not an A+ effort,  he does it.  He does it not because he's better or braver or has some special personal quality that other kids do not possess.  He does it because he knows all of the amazing support that this community and his Viking family has given him through acts of kindness just like this special evening.  It has given him the confidence and the feeling of safety to know that he is not alone and that everyone IS praying and fighting with him.  It makes my heart swell with pride to be a teacher in this district.

And I know, adults often grumble and are disappointed with kids these days . . . But I'm telling you, when a community of students and their coaches and teachers come together to show a child that he is loved and supported, God is there, and we are blessed.  We know this road will not be easy.  It will be painful and difficult to watch MacKale go through the days ahead.  It will be so hard to watch MaGill and McCoy go through it as well, but we still have to believe that God will make something good from MacKale's journey.  And this is just one way . . . through these young people.  They are such a gift to our community.   And as for Mike and me (Viking Class of  '85--Yes we are really that old.) and MaGill, McCoy and MacKale, we have never been prouder to say, "We are the Vikings."

Please continue to pray for MacKale and especially pray that the chemo will successfully rid his body of the cancer for good.

A special thanks to Sue Donahue Baker, Deb Rensberry and Chris Huckle for allowing me to 'lift' their pictures to use in this post.

Saturday, December 12, 2015

T'is the Season For Some Blessings

Christmas is quickly approaching which is sending me into a bit of a panic mode and also explains why I have been a bit negligent in writing these last two weeks.  This year is the earliest that we've had a tree up in the house.   It's was warm enough and MacKale felt good enough to go with us to pick one out. 

It really is a big, gorgeous tree . . .

And we actually had it up right after Thanksgiving, but two weeks later . . . it still lacks lights or ornaments.  Time seems to slip away without us realizing it and finding time when we are all together in one place is a precious commodity.  So when the Hem/Onc Department at DeVos invited us to their annual holiday party at the Grand Rapids Museum, we thought it would be a perfect opportunity to take full advantage of a family night with all of us together.  Our goal the week before was just to keep everyone healthy.  No sniffles or coughs so that we wouldn't get any of the other patients sick and also to have MacKale's levels high enough to ward off anything himself.

I'm not sure if you've ever seen the museum all decked out at Christmas, but it was so lovely.  The entire place was open for our Hem/Onc (Hemophilia/Oncology) Families to enjoy.

 And, oh my gosh, it was fun . . .

And boy, did we need a little fun.

And this was all because of the individuals who care for MacKale and our family.  It is mind boggling to me.  Here are these amazingly, smart and educated physicians and nurses who could simply do their job each day and leave the hospital and our kids behind and we would still be so grateful for all they do while they are here at the hospital with them.  But is that enough?  Not when it come to our DeVos docs and nurses.  They go above and beyond.  Each year they put on this huge party for the Hem/Onc families, and each year, Doctor Axtell, writes and directs a play staring all our favorite doctors, nurses and all the other people who take care of our kids everyday!   They practice on their own time and put together this unbelievable production.

This year's title . . .'A Very Jedi Christmas.'  

People!!!!  This is a MAJOR hour long program . . . they even dance!!!! And they were good . . .  I mean REALLY good.

. . . and, of course, the Star Wars theme was a huge hit with all the kids.

And why do they do it?  All for our kids.  You can never tell me that this is just a job for these folks. I know . . . I believe that they love our kids and care so much about making them happy!  And we are just so incredibly blessed  to have them all caring for MacKale.  It was such a great evening for us to be together before MacKale had to start chemo again the next day.  A special treat for sure that actually put MacKale in great spirits for his next treatment.   And he needed it because his second day into treatment, he got the 'ISOLATION' status for having a rhino flu of some kind.  Sure, a stuffy nose and cough probably isn't a HUGE deal to the rest of us, but to the kids on our floor who struggle with being able to fight off any little virus, it's a pretty serious deal.  So while we were stuck in the room, we were at least still able to have 'the cousins' come and play for a bit . . . 


and there was a football game that needed to be watched, of course.  Even isolation couldn't squelch the excitement that had been brewing for him all week, because, of course, MSU was playing.  The one good thing about being in the hospital when MSU has a game is that I know, for sure, no matter how bad MacKale might feel, he will not allow it to interfere with his watching 'the game.'  He always rallies.

We started getting messages early in the morning from friends making sure that MacKale would be watching the game, but the best one came from his Uncle Moff who lives in  . . . of all places . . . IOWA.  Moff has kept his head shaved for MacKale and in support of Mac's beloved Spartans, he even painted the top of his head . . . WHAT!!!!  

I can tell you in all honesty, I AM the bad cancer mom that allowed her son to stay up until well past midnight to watch that game when he should have been resting, but, you know what, we had so much fun watching it, I don't regret it a bit.  I might regret the fact that his blood pressure was 150/90 when the nurses took it about 10 minutes before the end of the game, but everything else was worth it.   And boy was Mac happy.

The funny thing is that our 'child life' pal at the hospital, Rhys, is a HUGE IOWA fan, and MacKale was dying to give him a little grief over the game . . . but you know . . . we were in isolation  . . . so I had some paper and markers smuggled in from the outside world and Mac came up with a poster to put on his door.   

His pal Matthew had sent him some funfetti in Spartan Green and White and when Rhys came in to see MacKale after the game . . .

 . . . he may have, kind of funfetti bombed the poor guy.  

Luckily, Rhys is an amazingly good sport and the excitement of the game got MacKale so motivated that we were able to spring ourselves from the custody of the ninth floor a little earlier than normal.  

He may have had a miserable flu virus with a nasty cough and runny nose, but he was a mighty happy camper to get home.  

It had been a challenging stay to be in isolation, for sure.  MacKale wants to be out and about even when he's getting chemo and feeling terrible.  He likes to be able to get out and walk around the floor, wave at the other patients through the windows and chat it up with the nurses.  Even though he avoids it and never wants to go if I ask,  when Rhys calls him to go to the hospital classroom each day, he does so he can meet new kids and play games after their homework is done.  So this last weekend was tough, but good news always makes tough situations a little easier to take, and we were able to get some good news to off-set it.

During that stay, Mike and I had the chance to meet with MacKale's surgeon about the plan for Mac's leg.   Initially, we had planned to have some kind of surgery at the end of December, but things had gotten pushed back. We had been waiting for his doctor to return from a conference in Europe where he had asked if he could take MacKale's case and present it to his peers.  Although he had a good idea as to what surgery he thought would be best for Mac, he was interested to hear what other surgeons might think.  Basically, it was like getting 26 second opinions that confirmed his plan . . . and this is why we love Mac's doctor!  He told us that we had several options to choose from . . . none of them right or wrong and that ultimately, it would be our decision, Mike, MacKale and mine  . . . We had the option to amputate.  There was a new procedure called rotationplasty (Look it up . . . it's kind of amazing!  I mean REALLY amazing!) or the surgery that he proposed for MacKale which would take the tumor and a section of his tibia along with margins and replace it with a cadaver bone.  Then with the bone, he could rebuild MacKale's leg.  Mac would be able to salvage the growth plate in his femur and his own knee.  

Of course, I really wanted to know what the surgery meant for MacKale in terms of mobility, because these are the questions that Mac is always asking me.   I knew that I was going to have to tell MacKale exactly what his limitations would be so that there wouldn't be any surprises.   It was probably going to break his heart, but he needed to understand all the different choices and what they meant.  So I asked his doctor . . .

With this surgery would MacKale be able to ride a bike? 

Will he be able to golf?  
"Yes.   He will never be a 'runner' but he will be able to run around and kick a soccer ball with his brothers.  Not competitively, but for fun."

But surely he won't be able to ski ever again?  
"I anticipate that, although perhaps not in the same way he did before, MacKale will be able to ski again!"   

WHAT!!!!!!  Skiing?  Of course all of this is anticipation and speculation, but, nevertheless, heavenly to hear.    MacKale will, of course, have a long road of physical therapy and rehabilitation, but  . . . 'he will be able to play again.'  And really, in addition to removing the cancer completely from his body, that is all I could ever want . . . just to have him play . . . with his friends and his brothers like a regular 11 year old boy.  

The only problem is . . . we didn't have a bone and, as you can imagine, a child size bone is not as accessible as perhaps an adult size one.  We needed a bone and we needed a bone in time for him to make his surgery date.  The doctors had already scheduled to pull a set of chemo treatments to the front side of surgery to buy them some time, but we really needed all the pieces to come together and it needed to be soon.

I'm not going to lie and tell you that it was easy for me pray for a bone for MacKale.  I mean, of course, I prayed.  I prayed hard, but  I was very conflicted.  Of course, I want him to have his leg, and I want him to have the best possible situation for surgery, but I also know in my heart that my son getting a bone means that another mother somewhere has lost a child.  Her loss would be my gain.   How can I pray for that or ask someone else to pray for that?  I couldn't bring myself to put out a prayer request for a bone to the masses, but I made the request from our immediate family . . . I needed to trust that God would understand my need and my desire to keep this request close to my heart.  And He did.  

Before we left for home, we got the news that a bone had been found and secured.  Not only that, but we have a tentative surgery date for the end of January.  We still have such a long road ahead of us, but these small victories make it easier to keep fighting.    They assure us that God has us in his hands, and  is providing all that we need . . . even when we don't realize we need it.  We are truly blessed.  I look at MacKale and wonder how he does it.  How he goes through the pain and the sickness, the disruption of his young life everyday and how does he do it with a smile on his face and without complaining.  He told me, 'there's always something to smile about, mom.'   He's right!  We have so many reasons to feel joy and feel grateful for how much we have been blessed.  There really is always something to smile about.

Please continue to pray for MacKale, and  pray specifically that the chemo is able to remove all evidence of disease from his body.  We know that God hears your prayers and that he will find some good to make of all this.   

Wednesday, November 25, 2015

In All Things Give Thanks

"Rejoice evermore.  Pray without ceasing.  In every thing give thanks: for this is the will of God in Christ Jesus concerning you."
- 1 Thessalonians 5:16-18 KJV

. . . in everything give thanks . . .

It was a blessing to have all of us together over the weekend despite the locational challenges of being in the hospital.  My heart was so full to have all three brothers picking at each other and playing.  I needed little boy hugs and snuggles, and, for a few hours, we felt whole.  When it came time for the boys and Mike to leave to head home on Sunday, my heart was torn in two.  McCoy and MaGill cling to me and I cling to them.  It's hard to understand this cancer thing when you are just a little guy.  It's hard to understand when you're a mom or a dad.  It wears you down and tears you up.  I was torn up.  But I picked myself up and headed up to the 9th floor after saying good-by and wiping my tears, ready to hang with my number one Spartan fan.

Thankfully, MacKale was feeling great and wanted to snuggle together and watch movies. That doesn't happen a lot in the hospital so I jumped all over the opportunity, even if he requested a 'football movie.'   First up . . . Remember The Titans!  Love, love, love that movie.  But then MacKale suggested a movie he had watched in his homeroom class last year.  "Mr. Main showed us this movie I think you'll really like mom.  It's called 'Facing the Giants.'"

It wasn't what I expected.  The acting was just ok, and it is definitely not award winning in the 'traditional' sense, but it spoke to me.   There were two messages in this movie that resonated with me and shook me to my core.  I have been struggling lately with worry and fear.  The 'what ifs' have been shaking my faith and wearing me down.  Oh believe me, I pray about it . . . A LOT.  But it has been difficult to shake.  And then in the midst of this movie, when this coach was in the deep-end of doubt, a friend of his tells him the story of two farmers.  These farmers were both experiencing a horrible drought and they both prayed to God for rain.  But only one of them went out and prepared his fields to receive it.  The friend asks the coach, 'which one do you think trusted God to send the rain?'  The coach replies . . . 'the one who prepared his fields for it?' And his friend asks . . .'Which one are you?  God will send the rains when He is ready. You need to prepare your fields to receive it.'

I looked at MacKale and said, 'Mac, we don't have time for worry and fretting, buddy.  We need to prepare our fields.'   Lesson one from 'Facing the Giants' hit me square!  I got it!

Then . . . as this little football team of 32 kids were facing the biggest, baddest team ever--the Giants . . . three times bigger . . . three time state champions . . . this is what the coach tells his kids . . .
"And if we win, we praise Him; and if we lose, we praise Him. Either way.  We honor him with our actions and our attitudes."

"MacKale, we need to always be thankful . . ." Lesson number two . . .This war we are waging against cancer with MacKale has so many battles.  It is so easy to become defeated, to feel like you're getting beat up and that we just can't get a break.  We end up in the hospital after chemo, we are separated, we are stressed, we are tired and can't quite understand why this is all happening, but win or lose, we have to continue to praise Him, because there are so many many many things that we have to be thankful for . . .  an abundance of amazing things that we can not lose sight of.

We are thankful to every single person that has taken the time to pray for MacKale, to pray that the chemo kills the cancer in his tumor 100% and heals his body.  For  Mac's fifth grade teacher, Jason Main, for introducing MacKale to 'Facing The Giants.'

We are thankful for our friends, Ami and Jackie and for Papa and Lucy who continue to care for the little boys, picking them up from school, keeping them over night and making them feel safe.  And for caring for Maya too . . . someone has to love our dog when we are away.  That is no small task when your dog is a Doberman.  We are so thankful for our co-workers, colleagues and clients who have supported us from the beginning.  To everyone that has covered for Mike at the resort or at the office so he could be with us during treatment, it is a precious gift, thank you.

We are thankful for MacKale's soccer team and their families who have cared for us.  We will never be able to express our gratitude for the parents who started the t-shirt drive at Mackinaw Trail Middle School which has boomed into something amazing.  And for every single kid, grandparent, store owner, teacher and adult who wears a #TeamMacKale shirt, we are so thankful for you and for continuing to show your support for MacKale.

For every single bald head shaved for MacKale, we are blessed. For our St. Agnes Church family, Father Joe Fix and every church in the Cadillac and surrounding communities that continue to keep MacKale on their prayer lists, we are so thankful.  For Cadillac Area Public Schools, my Franklin family and my aide-Laurie, Mackinaw Trail, all the teachers, staff, families and students who continue to stand behind us, you are loved.   For the parent who said, 'go Team MacKale' in the grocery store to Mac yesterday and  to the stranger who stopped and hugged me because, even though she didn't know me, she felt like she just needed to, I am thankful.  I needed it too.

For our friends, family and siblings, who text Mike and I on a daily basis to let us know you are thinking of us, I  can't tell you what it means.  I am so grateful for the teacher/blogger/TeachersPayTeachers community.  Teachers are an amazing community.  They have embraced my family and cared for us from miles away.  Maria, Jennifer, Mary, Jodi, Annie, Deedee and all my blogging teacher friends, I can not even begin to express my gratitude for all you have done to help me.

For the guys who blew our leaves this fall and will plow our drive this winter, we are thankful.  For Jeannie who cleans my house and my mom who does my laundry, for everyone that has sent cards and notes, we are thankful.

We are thankful for MacKale's friends, the ones who will still jump in bed to play with him, who email, reach out and send notes.  We are especially thankful for MacKale's friends Rylie and Micaih who continue to call and visit even when MacKale is not particularly talkative.   I know it's not always easy, but please don't stop.  It makes his day.

To Jack for playing video games and for his mom and dad for letting us crash at their house, for my friend Patty who sends jokes for MacKale to tell his docs, thank goodness for you.

For our wonderful babysitters, Erica and Jenna who, without fail, will drop their studies at Aquainas every time Mac is in the hospital to come and see him, play games and make sure he drinks, you are heaven sent.  I am thankful to their mom and dad for raising some amazing daughters.  For anyone that sent gas cards, Starbuck dollars, frozen casseroles, board games, books and cards . . . we have no words.  You continue to bless us. We are thankful for music, jokes, Facetime and anything that can take our mind off from treatment.

We are blessed and amazed by the community of Cadillac.   We can never begin to express our gratitude to the people we grew up with, our parents' friends, our boys' teachers and strangers who have embraced and supported us during this journey.  Our friends and family are kind of obligated to love us, but strangers . . . how did we become so blessed to receive the kindness of people who have never met us.  God is truly good and alive and well in Cadillac because we see it in the people who live here.  I am especially thankful to Shawna, who has shared her own journey as a Osteosarcoma mom with me, she texts me, answers my questions and listens.

For anyone that will talk golf, football or hunting with MacKale to keep his mind off all the ugliness he's facing, we can never tell you how much it means. We are thankful for MacKale's medical staff, from the staff at Mackinaw Trail Pediatrics to his hemophilia team in Traverse City to the amazing nurses at DeVos, childcare specialists, Dr. Mitchell and her oncology team and Mac's surgeon, Dr. Post.

Thanks to God for McCoy and MaGill and their wonderful resilience . . .

And I am SO thankful that God has given me a partner in Mike that is so strong.   He has held me up and kept our lives together despite distance, the distress and the despair of this journey.  The boys and I are truly blessed.

We are thankful for these things and so much more . . . so many more things and so many more people.  All of you  . . . have made it very clear to us that we do not travel this journey alone.

  . . . but . . . in every thing give thanks . . . every thing . . . every single thing?   It's easy to thank God for the the good things, to thank him when everyone's healthy, when all is well, when we have no worries . . . but isn't our greatest gift to Him, to be able to praise him even in our darkest hours.  It's hard, almost impossible for me to say that I am thankful for cancer.  How can that even make sense?  It has taken so much from our family, from MaGill and McCoy and mostly from MacKale.  I don't understand how to be thankful for THAT, but I pray that God shows me how and I'm trying.   I think about hemophilia and the devastation Mike and I felt when MacKale, this seemingly perfect, fat and happy little fella was diagnosed with hemophilia.  I wept for all the things he would never be able to do.  If only I would have known all the doors it would opened for him and how it would shape his life.  If you would have told me 11 years ago that  I would ever be thankful for hemophilia, I would have thought you fell on your head.  But look, 11 years later, I am so incredibly thankful for hemophilia.  Hemophilia, in addition to all the amazing opportunities it provided for MacKale and our family, has  allowed us to find his cancer and start treatment quicker than if he never had it.  It gave us an oncologist who has been invested in our son since birth and who we know is fighting for him on every level.  Is it possible to feel this way about cancer someday?  While I'm not quite there . . . (Heck, I'm not even close to being there.  Who are we kidding?)   . . . I will continue to try, because I believe that He will find a way to use this horrible journey for good.   How or when or why is still a mystery to me, but it will be used for good.  And until then, we continue to ask you to pray for us, for God to grant us faith without question, for strength, understanding and for the chemo to kill the cancer in MacKale's body and in the tumor that is in his leg 100%.

We are so thankful for all of you this Thanksgiving Day.

"You'll get through this.  It won't be painless.  It won't be quick. but God will use this mess for good.  In the meantime, don't be foolish or naive.  But don't despair either.  With God's help you will get through this." --Max Lucado from You'll Get Through This.

Sunday, November 22, 2015

The Healing Power of GREEN

Post chemo days can get mighty gray.  The cisplatin that MacKale has gotten now twice is so incredibly difficult for his body to bounce back from.  One of the docs called the time after this chemo, the 'cisplatin blues.'  It feels more like the cisplatin black and grays to me.  There are brief moments of a reprieve when he gets a text or note from a friend, a new picture of someone in a Team MacKale t-shirt or a card in the mail.  But for the most part,  MacKale gets very weak, withdrawn and has little opinion about anything other than food, and that opinion is that he doesn't want to eat.  'Do you want to play a game, MacKale?'  'I don't care.'  'Do you want to watch a movie?' 'I don't care.'  'Do you want to work on some homework?' 'I don't care.'  There's a common thread of 'not caring,' which to me translates as giving up.  I hate it.  It terrifies me.  I shakes me to my core and sends me into my own cisplatin blues and has me clinging to my faith with all the strength I can muster.

This week was another post chemo cisplatin blue week.  Each time we take this chemo, it hits MacKale like a train and makes bouncing back harder.  We got home from treatment on Saturday, but by Thursday afternoon, I was speeding back down to Grand Rapids, because his levels had dropped again.  These unplanned trips only eat away at the little light that is keeping him from turning completely off during these post chemo days.  And it's not easy on the rest of either.  Unplanned trips mean unexpected departures from home before the boys get out of school, which means stress for them, worry and concern over their brother, plus time away from mom.  They cry because they want us to all be together which means dad gets left to pick up the pieces.   So the cisplatin blues were a bit contagious this week.  We're all a little off color.  We all are a little 'not quite right' when we're not together.

But then Saturday comes, and no matter how blue or grey or black our moods have been  . . . MacKale wakes up GREEN!  Spartan GREEN.  This week was no exception.  Mike packed up the little boys first thing in the morning, headed south and were in our room by 8:30am.

Rub a dub dub . . . three boys in a bed playing Monopoly by 9:00am.  Sometimes just having your brothers to pick at and love on is the best medicine ever.  But put the added fact that the Spartans were playing OSU at 3:30pm and you have a day that could help us get through the greyest of weeks.  I seriously do not know what I will do when college football season is over.  I know that Mac will watch a little pro ball, but college ball is his first love.  I can only hope that it won't be too much time in between before golf starts up and the Phil Mickelson is play well.   Or maybe, since he won't be skiing this year, he'll turn his attention to watching basketball.  I just know something has GOT to fill that void when it happens.

Just the anticipation of this week's game turned MacKale around on Saturday morning.  Nurses and docs came in and started getting MacKale's predictions for the games being played on Saturday.  Believe me he has an opinion on all of them.  Would Connor Cook play or not?  Could the Spartans pull it off against OSU without him if he really didn't play?  If they do win, what do you think their new ranking will be?  MacKale, in his ever optimistic view of his Spartans knew that they could  . . . and would win.  All this pre-game banter actually got him so pumped that he ate breakfast and a bit of lunch.  Seriously, can't the Spartans play football EVERYDAY?  It would make this momma's stress level so much more manageable.

And so we played and napped and ate until the game started . . . but then . . . a package arrived.

Now I've told you that I truly believe that God has placed angels on this earth especially for our family.  Angels who anticipate our needs before we know them, who anticipate what will make our lives easier, angels who think about MacKale and what would might make being at the hospital easier . . . put a smile on his face . . .make him forget cancer.  I can not even begin to tell you all the angels that we have encountered in the last 2 months.  Some family members, some friends, some colleagues, community members, kid, adults, strangers and sometimes people who just want to remain anonymous.   One of these days, I promise, I'm going to write a post and see if I can possibly list them all.  I know I'll never get all of them, but I'm going to try.  But please understand, it's not about the STUFF and the THINGS.  I don't want you to think that, because if you know Mike and I, you know that accepting help is something that we don't do easily.  But I can tell you this, the  prayers, hugs and kindness demonstrated by all these angels have amazed us and sustained us.  How did we get so lucky?  Why are we so blessed?

Some kind angels who know MacKale's love of his Spartans, check in with him every week after the game.  They send him texts and pictures of them cheering on the Spartans.  They call to congratulate him when they win (or call to agree with the 'rotten call' if they lose).   He's even scored some new Spartan gear, blankets, a couple of hats and his 5th grade teacher even got the Spartan baseball team to autograph a bat for him.

It is SO cool and put an incredible smile on MacKale's face.

And then this week, as we anticipated the start of the game all cramped into our 9th floor room at DeVos, that package arrived for MacKale.  His hemophilia treatment center in Traverse City, the people who have helped managed his hemophilia and care for him since the beginning, knew that he would be watching the game and wanted him to have something a little special.  It kind of went like this . . .

In case you missed that . . . his hat said 'To MacKale . . .' and it was signed by
Coach Mark Dantonio
#18 Connor Cook
#16 Aaron Burbridge
#89 Shilique Calhoun
and Traverse City's  #30 Riley Bullough

These players aren't my sons, but if they were, I would be mighty proud of them.  They made a very sick little boy, incredibly happy.  Again, how did we get so blessed to have people in our lives who would go out of their way to find ways to make MacKale forget about cancer, if only for a few brief moments?  I can NOT tell you how proud he is to be sporting a hat . . . that says 'To MacKale' and signed by his Spartans.

MacKale wore that hat with PRIDE Saturday and his Spartans won!!! I'm not sure what medicinal good a Spartan hat and win does for a cancer patient typically, but a Spartan win this week helped MacKale consume a hotdog, jello and take all of his meds.  It had him screaming at me from his room while I showered this morning . . . 'MOM... woohoo I gained .1kg.'  It helps, slowly but surely, see levels start to move upward, it got him out of bed and doing his exercises and it paints a permanent GREEN over the top of the cisplatin blues.

 If you ever doubt that an act of kindness can make a difference to another person, MacKale is the proof that it does.

Thanks you all for your continued prayers for MacKale's healing and recovery.  We are ALL truly blessed by having you all behind us.

Sunday, November 15, 2015

Don't Be A Golf Dinosaur!

Humor is a precious commodity that you cling to when someone you love is going through the horrible reality that accompanies cancer treatment.  Sometimes it's something that is truly funny,  and other times, it's something so ridiculous, but the timing is just perfect.  It becomes your go to . . . the thing you count on to bring a laugh,  a smile or even, just a little comfort.

You all know that it was only a matter of days from when MacKale was diagnosed with osteosarcoma that he had to start chemo.  We all were literally in a state of shell shock.  There was a lot of hurry up and wait during those first days . . . hurry up and wait for an MRI . . . hurry up and wait for a biopsy . . . hurry up and wait for a pathology report.  In reality it was only 2 days, but it seemed like forever and then it was only five days after that, less than a week from our first doctor's appointment regarding this mysterious leg injury, that we started chemo.  There was a lot down time in there . . . a lot of ESPN . . . and an even greater amount of The Golf Channel.  Mac hadn't had a whole lot of chances to watch that much television  in the past.  He was an active kid, he was playing soccer, golfing, outside playing, shooting basketballs . . . He never met a sport he didn't like.  He was actually scheduled to head to Arizona at the end of October for a golf clinic he had been nominated to attend for kids with hemophilia, but cancer kind of changed all that. It broke our heart to tell him that instead, he'd be getting cancer treatment.  Rather than playing sports, he was now watching sports to past the time.  There has been a lot of football and a lot of golf during these times.  In his hours of watching The Golf Channel,  Mac became obsessed with these crazy commercials.  There's these guys who try to schedule their tee times by phone, You know, the old fashion  way instead of using an online service. The commercials always end the same way, with the jilted golfer acting like a dinosaur  (like he imitates it in a ridiculously weird way) and the by-line is 'Don't Be a Golf Dinosaur.'  Here's one of the three commercials . . . you'll see what I mean.

When you're 11 years old, it's hilariously funny, and MacKale would giggle and tee hee every time one came on.  It became a running gag.  Mac would try to catch me off guard . . . 
Mac:  Mom? 
Me:  Yes! What do you need Mac?
Mac:  Don't be a golf dinosaur!?  (tee hee tee hee tee hee . . .  )
Me:   dang you . . . . (grrrrrrr)

It broke the tension.  It made us all laugh.  It was our 'funny thing.'   It was his thing. Then that first round of chemo started.  Doxorubicin!  With a Cisplatin chaser.  It is the most hideous, horrible  . . . and evil chemo.  The only reason I could stand watching MacKale go through it is the thought that it was just as evil and hideous to the cancer . . . I prayed and still pray that as bad as it was, it was worse for the cancer.  MacKale basically withdrew during this chemo.  When he wasn't sick and vomiting, he tried to sleep.  He didn't eat.  He didn't drink.  He didn't speak.  My outgoing, social boy . . . wasn't.  It was heart breaking . . . I was devastated and scared and beside myself.  Until one night, in the depths of the dark cocoon of blankets and puke buckets that surround him I heard a weak little voice . .  . "Mom?"  Oh my gosh . . . I had been frantically waiting for him to talk to me . . . come back to us . . . "What Mac?  What is it?  What can I do?"  And, of course, you know what I heard " . . . don't be a golf dinosaur . . . (hee...hee . . . hee) . . ."  DANG it!  He got me!  But I also knew, he'd be ok.  It was his way of saying . . . I'm still in here.  No sweeter words could a mother hear.  Mac was back!  Just a little glimmer at first . . . but he was there.

So in my quest to find him something to cheer him up during those first few days,  I went online frantically looking, searching and asking everyone I could think to ask, 'where can a purchase a "don't be a golf dinosaur" t-shirt, hat, something, anything . . . that I could get for MacKale.    They don't make them.  Dang it again.  I wasn't giving up so easily though.  You know how it is, your child is hurting, you'll do just about anything to bring a smile to his face. .  .even contact some huge company on the small chance they might be able to help. I wrote a note to the Golf Channel and the advertising agency that produced the commercial explaining how MacKale loved this commercial and telling them our story to see if by some crazy chance they had anything with 'don't be a golf dinosaur' on it that I could purchase for MacKale.  But guess what?  There was nothing I could buy. They said they would see what they could maybe find.  Well . . . I tried anyway.

Then this week marked our return to the hospital after two previous weeks of Methotrexate chemo therapy treatment.  This week we were back to face Doxorubicin and Cisplatin again!  Going back to the hospital is not amongst our favorite things these days as it is, but we were all a little apprehensive and scared about facing these two meds again.  Our doctors assured us that they had a better plan to get us through the side effects this time, and for the most part, they were right.  Instead of vomiting, Mac just slept . . . a lot . . . as in, he went to bed one afternoon and woke up two mornings later.  I basically helped him with his bathroom needs and he would crawl back into bed without so much as a peep.  I hated that . . . absolutely HATED that he wouldn't talk to me . . . it scares me and takes me to a dark place I don't like to go to . . .  but then on that last morning . . . as if on cue . . . I heard his weak little voice from deep under a mountain of pillow and blankets . . .  "Mom?" . . . "Yes MacKale, you're awake, what is it?  What do you need? . . ."  You guessed it . . ."don't be a golf dinosaur."  I cheered.  I hooted.  And I hollered, jumped in bed with him, gave him a squeezed and yelled . . . "HE'S BAAAAACK!!"  It was just a glimmer, but enough to reassure me that he was on his way.  We could pack up and head home from  DeVos to start the hard work towards recovering and  bouncing back from the chemo stupor that knocks him down so far I often fear he won't get up.

Home after Cisplatin is both a blessing and nerve-wracking.  It's a blessing to be home with the boys.  It's a blessing to try and find some normalcy for a few days.  It's a blessing because we are together.  But it's also so incredibly nerve-wracking and scary for me.  I don't have that back up of physicians and nurses who know how to care for him best.  Medicine is not my area of expertise.  This is not my 'gift.'  So I tiptoe around  . . . and hold my breath . . . This chemo sent him back to the hospital the last time.  So for the next 10 days I may look through everyone else around me, forget to exhale, fail to sleep until I know we are in the clear.   It's stressful, but still  . . . home is a blessing.

Yesterday we had an added blessing of sorts when we got home.  There was a big box waiting for MacKale. . . a box from The Golf Channel.

Not only had they come through and created something with 'don't be a golf dinosaur' for Mac and the whole family, but they had showered him with a plethora a Golf Channel goodies . . . (no more stealing tees from his brothers).

It was a gesture of kindness big enough to get him excited and looking forward to playing the game he loves so much.  It was amazing medicine for a boy who has been through so much already and has such a long road left to travel. MacKale loves sports . . . all sports . . . but quite honestly, golf is probably one of the few that he will be able to continue to play after his surgery.  This sports minded boy has so many challenges and changes ahead of him in regards to sports.  He will have to find new ways to enjoy the things he loves the most.  But golf . . . golf he can hold on to.   It will NOT be easy.  There will days of frustration and disappointment . . . we already see that when he says, 'I just want to go out and play.' But hopefully, the anticipation of a day hitting balls will almost be enough to make him forget all this chemo garbage and start thinking about how he is going to have to work on a new swing to compensate for his new 'salvaged' leg.  It gives him 'something' to reach for.  And for that . . . I love The Golf Channel.   They didn't have to go out of their way, but they did.  And I think that's pretty amazing.  More than the great 'stuff',  more than going out of their way to create this crazy t-shirt for Mac and all of us (yes, we will all be sporting one next year on the links), they have acknowledged our need for laughter through this horrible journey with their gifts and have given my sweet boy a smile and a renewed hope for some great golfing next summer.

Please continue to pray that God heals MacKale, that he gives him the strength to survive the after effects of chemo that ravage his body and that he rids MacKale's body of this horrible disease so that summer golfing hopes can become a reality!

And oh yeah . . . 'don't be a golf dinosaur!'