Tuesday, June 28, 2016

Defining our lives . . .

We have so many blessings to be thankful for at the McGuire home these days. It's been a magical three weeks.  No chemo! Woohoo!  Very few labs!  A quarter of the pill intake . . . but the best part is just being together and resuming some familiar routines.  Things we used to take for granted but now see as true blessings in our lives.  Like . . . school! Yes!  I said school!   Both MacKale and I were able to make it back for the last 8 days of the school year including his school trip to Mackinac Island.  Yes, that's right.  A week after finishing chemo, this boy and his dad joined his classmates to trek around the island. No stinkin' crutches were keep him sitting at home.  He was going!

And so we resumed our school life . . . even if it was only for a short time.  At one point, Mac looked at me and said, 'ya know mom, I can't remember the last time I was in school 5 days in a row.'  I replied, ' . . . ya know what?  Neither do I'  It was fabulous!   Of course, it was great just being able to get back to kindergarteners, but even more so, it was such a blessing to be back at school with my other two boys.  Once again, McCoy and MaGill came to school with me each morning, I could sneak a quick squeeze in at lunch and, at the end of the day, they went home with me.  You will never know how incredible that feeling was for me.  I missed them desperately this year and our routine  and was so thankful to have it back.   

That first day when MacKale came into Franklin after returning from the his day at the middle school to meet us, I could hear those familiar crutches coming down the hall.  For a split second, I wondered what my little friends would say to him . . . they hadn't seen him in 9 months.  Would they comment on his lack of hair, maybe that ginormous scar on this leg, or his crutches or brace . . . but nope!  True to kindergarten form, they surprised me with with a  . . . 'Mrs. McGuire, MacKale got SO BIG while he was away at the hospital.'  And this folks, is why I teach 5 year olds.  Cancer Shmancer!  They didn't care.  They just wanted Mac to come back at the end of the day to play and dance to GoNoodle with them like he used to do.   And he did!

We all have just been trying squeeze as much fun and being together as we possibly can into every single day these last three weeks.  

At one point, MaGill was snuggling up to me and said, 'I'm just so happy that MacKale is home mom.  Things are just so much better when we're all together.'  I couldn't agree more.  I'm most happy when all four of my boys are all where they need to be . . . together.

They have been jumping at every possible opportunity to embrace fun.  

 . . . hanging with Papa and the boys at the car show . . .

 . . . channeling their inner silliness . . .

whip creme mustaches

 . . .  playing  . . . a lot . . .

 . . . always up for a game of cards . . .

 . . . focusing on the funny . . .

(My teacher friend Patty has sent MacKale jokes, without fail, for the last nine months---she is our laughter angel.)

 . . . even when the thing that is 'funny' is you!

(Mac decided it was time to change his 'mii' on our Wii system to truly reflect his new look.  What do you think?  There wasn't an option for a bum leg.)

We have also been able to get back to 'our people.'  Our community that has been our family and has supported us with their prayers and good deeds through this fight.

This little town continues to rally and show their support for MacKale, never failing to remind us that they haven't forgotten his fight.   We continue to see #TeamMacKale shirts on young and old and it fills our heart to know that you are still thinking and praying for our family.

 Recently when the annual cardboard boat races were held at the canal,  Lauren and the girls from the Mitchell State Park decided to build a 'Team MacKale' boat to continue to keep Pediatric Cancer in the fore front of our community's thoughts.

It was a great boat design  . . .  

The day of the races, the little boys and I donned our Team MacKale gear and went down to cheer them on.  Just like Mac, that little boat lasted not just one, but several races.  It may have not been the first boat over the finish line, but it kept going.  And as we sat there that day cheering it on, there were visitors to our community that asked us if we were 'with the Team MacKale boat' because of our shirts and the boat design.  The question presented a timely opportunity for me to tell a group of strangers to Cadillac about the incredible community support and the way you have all rallied around MacKale.  I was happy to boast about our wonderful neighbors and friends in the Cadillac area and how extraordinary this place truly is . . . more than a community . . . more like family!

Our end to chemo also allowed us the chance to  get back out to the soccer fields to cheer on MacKale's team in their last game.  These boys have grown so much since when we left them in the fall, both in size and skill.  They blew us all away.  It was truly one of those bitter sweet experiences . . . Mac cheered on his team loud and proud, but at one point he leaned over and said, 'Man mom, I wish I were out there playing.'  I didn't have the heart to tell him I felt the same way.  But the disappointment was fleeting and he was right back cheering them on in the next moment.  It's a bitter pill for him to accept that he won't be playing soccer again . . . that he won't be part of that team in the same way he was . . . but he's learning to accept it, moving forward, trying to discover new ways to stay involved and re-defining himself.

He is moving forward . . .

 . . . working on getting stronger . . . no more wheelchair for this kid  . . . (big cheer from mom and dad for not having to manhandle that beast anymore) . . .

 . . . and tackling PT three times a week.  He's working that leg and getting stronger each time.  We are currently at 70% weight bearing which means it's only a matter of maybe a month or less before we are trying this new leg out.  I'm anxious to see him walk again.  You never realize how much a little thing like seeing your child walk is taken for granted until you watch them struggle with mobility for such a long period of time.  Walking . . . I'm not sure I'll be able to hold it together when it finally happens . . . but I still can't wait to see it.

I am so very guilty of being such a proud momma . . .  so proud of all the progress he's making with Teri at Dynamic Physical Therapy.  She has given him so much confidence and has just the right amount of 'mom to three boys' in her to help him stay focused even when he tries to distract her with endless chatter about sports and trivia during those times when he's feeling less than enthusiastic about an exercise.

We love seeing his progress at just those little things like standing up and sitting with just the use of his legs  . . .

His desire to move forward, get better, start to move and walk is fueled by a desire to do more . . . move more . . . play more . . . And of course, by play, we mean . . . golf . . . 

There is no question in my mind that any boy that's willing to get up at 6am to get ready to golf with his dad before dad has to head into work for the day LOVES golf.  There's even been a resurrection of the infamous  'don't be a golf dinosaur.'  

Second only to golf is fishing . . . 

 . . . a TON of fishing . . .

 . . . and did I mention fishing . . .

He loves it so much, that sometimes he's so dang happy to be fishing that he just has to kiss his catch before releasing it.

It's been blissful.  Truly incredible to have all these weeks.  We haven't taken a single moment of it for granted because tomorrow we are slapped right in the face again with the reality of pediatric cancer.  Tomorrow we spend the day at DeVos for scans . . . because you see, just because you've done the treatment . . . you've endured the chemo . . . and are working at overcoming the surgery and rehabilitation of your defective bone . . . you don't get a free pass.  You don't get the title of 'remission' or 'cured' or even 'done.'  Instead, you get to come back for scans!  Scans to confirm or deny the existence of cancer that may or may not still be lurking in your body somewhere.

For now, MacKale seems pretty blissfully unfazed by scans.  I love that about him!  His main concern is whether after a day at DeVos he will have enough time to stop and hit some balls at Ferris University's Katke Golf Course on the way home.  But for Mike and I, scans kind of bring this whole last year screaming back to the fore front.  We are nervous  . . . and uneasy and this is just the beginning of what we hope to be many many many years of scans, because while the scans detect any cancer that may be lingering or that may have popped back up, they also have the ability to confirm that the cancer has NOT come back.  They can give us the confidence of NED (No Evidence of Disease), and we will take it, even if we have to do it over and over again every three months.

It is our prayer every night with the boys that God bless and care for our friends on the 9th floor of DeVos who are fighting cancer and to also remove the cancer from MacKale's body and "never ever ever let it come back."  

God brought us through this fight so far and we continue to reach for Him for strength as we start this new phase of treatment and healing.  There is no better captain for Team MacKale.  He has been so good to us, and we count ourselves so incredibly fortunate to have had Him speaking to all of you and your hearts as you joined us in fighting for MacKale.   We count your prayers as precious, priceless gifts and, although perhaps greedy, we are asking for more.  Please continue to pray for MacKale.  Specifically, please pray the scans tomorrow (the CT, bone scan, x-rays, mri, lab work and ultrasounds . . .) all give MacKale the status of NED.  Pray for Mike and I to continue to have faith that God is with us and has MacKale in his hands.  Pray that McCoy and MaGill will feel the peace that comes from knowing MacKale is home to stay. And finally, pray that the cancer leaves Mac's body and 'never, ever, ever comes back.'

Finally, I have always said that God will make something good of all this.  I still believe that . . . I'm not sure what it is.  I'm not sure what it means to us. But pray that we will help facilitate that 'good' in the way that He intends and understand the direction He is pointing us towards as a family.

As always, we are so thankful for each and everyone of you.


  1. What a wonderful post! So happy to hear that you all have been able to enjoy the last three weeks together as a family! I'm so glad that Mac is making such amazing progress but I'm not surprised...he has such grit and determination! I continue to pray for you all and especially that Mac is found "NED" forevermore. :-)

  2. I am definitely continuing to pray. Thank you so much for your inspiring, uplifting posts. I'm sending you and your family a virtual hug!

  3. Such wonderful words. Thank you for sharing your gift of communication. we continue to pray for NED and that God continues to watch over you all.

  4. Without fail, you are in my prayers. NED will be added to them tonight.
    Hugs to all of you!

  5. Praying with all my heart that MacKale scans come back clean! What a beautiful post, so happy you are getting to be together and home. God bless you all and keep you in his constant care.

  6. Prayers from New Hampshire... your eloquent and moving posts have made me feel like I was standing with you on this journey. Enjoy your summer, and let the fun times and sunny days eclipse the scanxiety if at all possible...