Thursday, January 28, 2016

Limb Salvage What?

I need to preface this by saying, I'm not a doctor.  Not even close.  In fact, all this medical and health stuff is so out of my wheel house.  Even when MacKale was diagnosed with hemophilia and Mike and I had to learn how to infuse him and mix factor, it has never been a 'comfortable' area for me.  I have always said, Mike is much better with that end of things.  So when I try to explain to you what it is exactly that MacKale will be having done, please understand . . . I'm not a doctor.

So here's what I know.  First thing Friday morning . .  . yes it's A GO . . . MacKale will have three  four surgeons working on him.  To start, he will have a pediatric surgeon put new port in his chest.  His last port lasted 7 years and was placed specifically for hemophilia infusions.  His new port with be a double lumen allowing for two IVs to be going at the same time.  This is more ideal for chemo treatment.

Once he has his port placed, his orthopedic oncology surgeon will take over and begin the process of removing the tumor in MacKale's leg along with portions of his tibia and fibula and margins of muscle and tissues around all the while navigating blood vessels and nerves that may or may not saved.  It is our prayer that this tumor, after testing, will come back with a high level of necrosis or 'tumor cell death.'  100% would be the goal.  Please keep this in your prayers as well.

Then once the tumor, bone and margins of muscle and tissue are removed, or orthopedic surgeon will begin the process of rebuilding MacKale's leg with a donor cadaver bone.  Because MacKale will lose much of his original leg 'parts'  . . . ligaments and tendons and such . . . his surgeon will then get help from a sports orthopedic surgeon in making sure all the extra cadaver pieces are attached correctly to assure that the leg is as functional as possible.

Once those pieces are all in place and secured, a plastic surgeon will come and help take muscle from another part of MacKale's leg to replace and fill the portion removed as part of the tumor margins.   The last part will be the stitching him all up to make the scar look 'pretty.'

All in all it will be approximately a 12 hour surgery.  MacKale was most concerned that his surgeon would get bathroom and snack breaks, but he has assured MacKale that he will get a break here and there but won't leave him alone.

Of course, any surgery is scary, no matter how minor.  This is a major one.  It's major, it's on a child and it's on a child with cancer AND a bleeding disorder.  To say that we are scared is an understatement.  Although we have great faith in our surgeons and an even greater faith that God is holding MacKale in his hands, our faith is not perfect . . . we are weak and we are afraid . . . So if you have a spare moment on Friday  . . .please pray for MacKale.  Pray for God to guide his surgeons' hands.  Pray that the chemo has 'killed' his tumor and that his little body can be rid of cancer.  Pray for MacKale to heal without complications or infection.  Pray that his sweet spirit will withstand the pain and discomfort from surgery and sustain him while he goes through months of physical therapy and healing.  And then if you still have time . . . play for us.  Pray for MacKale's little brothers who are also afraid, and missing him  and missing having our family together.   Pray for Mike and I.  Pray that we can put fear aside knowing that God has this . . . that some how, some way good will come from all of this.   Pray that we will find peace and our family will be whole again.  And when you've done all that praying . . . spread the word so others will keep us in their prayers too.

Thank you for all your continued support and prayers.  We will be updating MacKale's progress throughout surgery on his Facebook page so if you're interested, follow us there by clicking HERE.

Also, I finally got around to setting up an instagram account for MacKale.  He's been wanting to share some pictures that way.  If you'd like to follow it's HERE.

Monday, January 25, 2016

Working through disappointments . . . and prayer requests!

After the thrill of our Christmas chemo break, we hit the ground running for these last to rounds of chemo before Limb Salvage Surgery, schedule for Friday the 29th of January.  These are all mini-goals we keep trying to tick off.  They aren't fun.  Chemo is pretty much everything BUT fun . . . but we have our moments where it try to make it bearable.

It's good to keep your humor . .  .

. . .  and smile if you can . . .

. .  . go to hospital school and keep up with your work . . .

. . . and always find time for practical jokes on your favorite 'Hawk-eye Fan' childlife specialist.  MacKale lost a bet that left him wearing Iowa apparel  . . .  it was painful . . . 

 . . . so to retaliate he and his hospital teacher took advantage of the winners' water bottle being left behind.  They left this ransom note:

If you ever want to see me again, you MUST wear an MSU hat for an entire workday and write a one-page paper on how great Michigan State is.  If it has any negativity towards State it won't count!  XOXOXO,  Your Water Bottle.

It makes the time go by a little faster!!!!

MacKale has been a champ through these last two stints in the hospital.  He has a routine down for this kind of chemo, Methotrexate.  It goes in for 24 hours to eat everything up like PacMan and then at the 24 hour mark, they send in the 'rescue drug' to hold it off.  Methotrexate has to be eliminated from your body before you can get your exit ticket to go home.  The best way to get rid of it is drinking and walking . . . walking is a challenge, but MacKale just crutches it. It's tough . . . but he does it.  . . making his rounds and flirting with the babies.

12-15 times around the unit a day is the goal.  (One time he went 18!!!! That's a mile and a half!)  And he usually clears at the 72 hour mark. For a kid without crutches, that's outstanding . . . This is where I get to boast a little about how great he is. . . so indulge me.

But this last weeks' round of Methotrexate, he had everything going against him.  He had his port go on strike.  It pooped out, and he had to finish out his treatment with an IV.  I was anticipating a very slow eliminating process due to all the setbacks.  I was sure that he wouldn't clear at his normal rate, but he surprised us all.  He cleared 12 hours early!!! He was motivated to get home, have a few days with his brothers, travel down to Lansing to watch his favorite Spartan beat Maryland, play with his Maya dog and sleep in his own bed.

But unfortunately . . . none of that happened.  Instead, he spiked a fever Friday afternoon and that
means and ER visit and, in this case, an ambulance ride to DeVos.

And that's where we've been ever since .  . .waiting for him to stop spiking fevers . . . trying to figure out why he has a fever and how we can get him healthy enough to stay on track for LSS (Limb Salvage Surgery) on Friday.  It's frustrating and aggravating and disappointing . . .

When you're a parent, it's almost worse when you know your child's disappointed and they don't show it . . . MacKale's been pretty stoic.  He knew as soon as we hit the ER room in Cadillac on Friday that a Saturday trip to MSU for basketball was out.  He said . . . 'it's ok.  I'll watch Matt on TV and cheer him on.  Maybe we can make it to a different home game later this spring.'  So then, he was just hoping to make it home Monday so he could spend some time with his brothers before surgery on Friday.  "It's just I'm sick of the food and video games get boring."  I'm with him.  I'm sick of the food and the video games too.  Thank goodness for Big Ten Network, ESPN, the Golf Channel and Animal Planet.  Between those four stations we can usually find something to watch . . . but it would be better to be home.

But it doesn't look like we will be coming home anytime soon.  Despite all his cultures coming back negative, MacKale still is spiking a fever off and on.  He has been on several antibiotics, but it looks like his port has to come out sooner rather than later to rule out an infection.  So that means, what would typically be outpatient, will be an extended stay in the hospital in hopes that by removing the port, his fever will subside and he will be ready for surgery on Friday.  Right now, that LSS surgery is a goal but not guaranteed.  If the fevers persist, they will not preform surgery.

So that's where we are . . . surgery to remove his port is scheduled for tomorrow.  And LSS is currently scheduled for Friday, but that could change depending on what does or doesn't happen.  So it's been a weekend of disappointments, but we are prevailing with visits from  card playing Papas, funny texts from friends, sports on TV and lots of Candy Crush.  We WILL turn these disappointments into something good . . . we are determined!  We may have to come up with a few new practical jokes to pass the time.

So that leads us to requests for prayers.    Specifically, we need prayers that his fevers will subside, we need prayers for a safe and successful port removal surgery for tomorrow and for MacKale to be healthy and ready for surgery as scheduled for Friday!  As always, we are so thankful for all of your support and prayers.  We have faith that God is holding MacKale safely in his hands and hears all our continued prayers.  And MacKale says, "Go Spartans. "

Yes!  MacKale did get to see Matt play Saturday night and I'm pretty sure we kept the floor awake with all our hooting and hollering.   It was great medicine for MacKale . . . the BEST medicine to see Matt do so well and see his Spartans win!   As soon as the game was over, he was out of bed and crutching around the floor making sure all the nurses and staff had the play by play and stats for the game . . . and to let them know how AMAZING Matt did, of course.  Is it any wonder why he is MacKale's favorite?

Sunday, January 17, 2016

No One Fights Alone

I remember sitting at McGill's soccer game on September 29th and waiting for Mike to call me and tell me that MacKale's blood test showed he had an inhibitor.  We lived at those fields for the last 5 years.  If it wasn't MaGill's game, it was McCoy's or most often MacKale's.  He was on a traveling team and had started officiating some games this year.  But then Mike showed up with MacKale and McCoy at the fields and said that MacKale didn't have an inhibitor.  He had a fracture, but that wasn't enough information so they did an ultrasound and Dr. Mitchell would be calling us.

I just KNEW . . . I knew in my gut something wasn't right.  All I wanted to do was to get home and get Dr. Mitchell on the phone.  You have to remember that I have known this woman for almost 12 years.  She is like family.  She loves MacKale and we love that about her.  So when she called, I went into my closet and closed the door.  She said "there is a mass . . . we don't know what it is for sure . . . it might not be cancer . . . . " They needed to make sure so we needed to come down tomorrow for an MRI.   But Dr. Mitchell knows me and she knew I was gonna push her for more information.  I remember sitting on the floor in my closet and saying . . . 'but what if it is cancer?'  I needed to hear it . . . 'If it's cancer, I think I can save his leg.  I know you know I love MacKale.  I will do everything in my power to save him.'  If you've ever wondered what it really feels like to be alone, that's it. For me, that was the loneliest moment of my life.  It was paralyzing.  I couldn't sob.  I couldn't lose it.  I needed to hold it together for my family, for the boys, for Mike . . .for MacKale.   The absolutely last thing I wanted Mac to feel was the loneliness that I was feeling at that moment.  I didn't know how I was going to protect him from it, but I knew that he had to know, without a doubt, that he wasn't alone no matter what ended up happening.  I prayed for faith without question . . . for wisdom  . . . for the ability to protect him from this, but what I didn't realize at the time was that the answer to that feeling of 'being alone' in this fight would not come from me or Mike.  It would come from his classmates and all of you.  God had taken that burden from us and given it to someone else.

Mackinaw Trail Middle School

I remember the first time I saw a Team MacKale shirt.  I was sitting in MacKale's hospital room and it came across my Facebook feed.  I didn't quite know what I was seeing.  I didn't know anything about it. But then they started popping up all over the place.  I saw kids wearing them in the grocery store.  The little boys and I were walking downtown one day, and I even saw them on the stuffed animals in Toy Town's window display.  

People would ask me who had started the t-shirt drive, what's the story behind them or how to get them and I didn't have a clue.  All I knew was that I would see a shirt or someone would send me a picture and I would show it to MacKale and it would boost his morale immediately.  He knew from those pictures and from seeing people wearing the shirts that he wasn't alone.  'No one fights alone.'  Right?

I told him, "Buddy, every time you see a shirt it tells you that someone is praying for you . . . They've got your back . . . They are here for you!   They haven't forgotten you!"  That's a pretty powerful message.  He doesn't get to see his friends or attend school very often so seeing the shirts, absolutely reaffirmed the fact he wasn't forgotten. 

Finally, the mystery of the shirts was solved when I got a note one day from Terryl Kovacevich, a mom of one of MacKale's classmates, Abby.  Terryl wrote:

"In reading your blog you mentioned wanting to know who was behind Team MacKale shirt. I don't want this message to be taken as a "who", but as a why.
A few of us parents have 6th graders at MTMS. When our children came home one day, the first thing out of their mouths were,"MacKale has cancer." We questioned our children, in disbelief. Then, you posted a blog and it backed up what our 6th graders had told us. The students wanted to do something. So, Megan Schopieray and myself thought about the idea of t-shirts. We contacted Kevin Mist for a design and Travis at Kelgraphics to see if he could do what these students wanted. Kevin and Travis both have 6th graders at MTMS also. As the word got out, multiple 6th grade parents offered to help. The 6th grade students cared about their classmate. Team MacKale shirts were it! Kids were ecstatic to be able to do something to show MacKale their support. These children couldn't wait to wear shirts in support of MacKale. When flyers were just put out and it was just launched on the Internet, that first night traffic flow crashed the Internet site! . . . This isn't about us, but about the kind child that you are raising that made students want to show support. These students think very highly of MacKale!!"
Yep!  I cried!

Because here's the thing . . .I talk to MacKale and his brothers about this a lot, and I really believe it. . .  I believe that everyone, no matter how young or small or old or busy . . . everyone everyday is presented with opportunities to 'do good.' God offers you these opportunities.  They are His gift to us. That 'good' may be as simple as opening a door for someone, asking someone to play that doesn't have someone to play with or simply smiling at a stranger.   Or the opportunity may be finding a way to make a sick child know that he's not alone.  The opportunities are all around us.   The 'taking' of that opportunity . . . the ability to act on those moments . . . that is up to us.   And how do we teach our children to look for those opportunities and act on them . . . by modeling!   In the case of MacKale, I believe that these amazing parents heard their children and saw that they desperately wanted to do 'something.'   They set an amazing example for their own children and in the process have left MacKale with an army of supporters.  I am sure this gift is far bigger than they ever thought it would get, and I guarantee you, it has a much greater impact on MacKale and our family than they can ever have imagine.

The problem of MacKale feeling alone and forgotten?  Yea, I don't think that's something I need to worry about right now thanks to Team MacKale.  Each and everyone of you has risen to the opportunity be kind . . . to 'do good'  and you took advantage of the opportunity.  I don't have words to tell you what that means to our family. In fact . . . pictures speak louder than words.

So let me show you just how amazing you all are.  And I have a request . . . but I'l save that for the end.  So check these out first.

Mackinaw Trail Middle School

Cadillac High School

St. Ann's Pre-School
Baker College Nurses Class

Cadillac Junior High School

Mac's friend Kate's Class in Grand Rapids


The Cincos

The Kellers

The Allans

The Wahlboom/Woodworths

North 44

The Spencers

Our Mac Trail Peds Family

The Knopfs

The Mills/Moffits

The Amosons

The Hollys

The Gebhards

The Martinsons

The Meyer Girls

The Wistinghausens

The Gulleksons

The Olenzaks

The VanderVeldes

The Gibsons
Pam and Kasen

The Allens

The Whetstones

The McRoberts

The Bachmans

The Bells

The Klinker/Andersons

The Nelsons
The McGuires

The McGory-Moffit/Weigands















Alex and Reed

Mrs. Bengelink and Mrs. Dontje
Cadillac and Ogemaw Heights Basketball Teams

Teachers and Bloggers
Katie King From Queen of the First Grade Jungle

Tanja from Journey of  A Substitute Teacher

Mandy from A Special Kind of Class

Lori from Teaching With Love and Laughter

Jennifer from Crayons and Cuties in Kindergarten

Krista from The Creative Chalkboard 

Katie from Little Warriors

Kaci from Mrs. Hoffer's Spot

Mrs. Kassuba

Mrs. Quist

Tammy from Live, Love, Laugh in Kindergarten

Our Franklin Elementary Staff (and family)

In Strange And Far Away Places

Mackenzie in Washington

Doc Rheume in Cambodia

Lynn in Albert Lea, MN

Ryan Rock Climbing

The McRoberts at Great Wolf Lodge

At Toy Town

Cori in Baton Rouge, LA

In the window of Cadillac's Dance Studio

Maddie in New Zealand

At a Lions Game

Chad in Chicago, Miami, Belize, Honduras, Grand Cayman and Cozumel
Matt #10 in where ever MSU is playing that day!

All these folks are amazing right?  I know.   We are so incredibly blessed and are very aware of the fact that not every child going through treatment for cancer is shown this level of support.  This is something extraordinary, God given and incredible.  

And I hate to do this, but I'm going to ask you for one more favor.  It is purely selfish on my part, but I'm going to ask anyway.  If you have a Team MacKale shirt would you do our family a huge favor and plan on wearing it on Friday, January 29th.  That's the day that MacKale goes into Limb Salvage Surgery. Surgery is risky under any circumstance.  This surgery is a doozy.  It will last 10-12 hours, with three different surgeons and then there is the added fact that MacKale has hemophilia.

So while  I understand that he won't see you wearing the shirts, others will see you.  And here is what I hope will happen . . . when you wear your shirt, others see you in that shirt and know that you're praying for MacKale.  It will hopefully remind them to pray for MacKale on that day especially.   I really want God to be working overtime listening to all those prayers.  But here's the other thing that I hope will happen when you all wear your shirts.  I hope it will show people you are all part of the same team.  It will show all those kids that are trying to understand and cope with what's going on with their friend MacKale that we are all in this together.  No matter how old you are, where you work, where you live, where you worship . . . all of you together are a team that supports and prays for MacKale.   I hope it will reaffirm to everyone in this incredible community of Cadillac that together we are able to do amazing things and make an enormous difference in the lives of our neighbors.   

And for people who don't know about MacKale . . . for you folks that maybe don't live in our community . . . perhaps someone will see you in your shirt and ask you what this 'Team MacKale' thing is all about.  And maybe you can tell them about MacKale and they will in turn remember MacKale in their prayers. 

And as for WHAT to pray for . . . please pray for healing for MacKale.  Pray that every cancer cell is removed from his body.  Pray that God will guide his surgeons and nurses during his surgery.  Pray that MacKale will tolerate the pain and come out smiling. Pray that MacKale will be able to soon walk and play again. . .  and return to his friends at school.

Kendall and Abby

God has truly blessed us with individuals that were shown an opportunity to help and to help in a way we couldn't have even imagined, and they accepted that challenge.  I have to say a special thanks to the parents and students that started this T-Shirt extravaganza.  To Abby and Kendall, who saw a friend in need and who came home and expressed a desire to 'do something' and to their parents, the Kovacevich and Schopieray families, for listening and making that 'something' happen.  To Kevin Mist for the t-shirt design and then Travis from Kel Graphics for going above and beyond to make the shirts a reality.  You are so incredibly special to us.  We will never be able to express our gratitude for all you have done to reassure MacKale that 'no one fights alone' by making these shirts a reality.   If loneliness was my fear for MacKale at one time, it surely isn't today.  

Also, if you sent me a picture and I didn't put it in this post, I am SO incredibly sorry.  I tried to keep them all together and organized, but I'm pretty sure I probably missed someone.  If you haven't sent me a picture yet and would like to do so, please do.  I show all the pictures to MacKale and he loves seeing them.  Then I will also share them on his Facebook page.

And if you haven't gotten a shirt but would like one, Toy Town of Cadillac has taken over the selling and distribution of them.  They ship anywhere in the US and you can find their website HERE or by clicking on the picture below.