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.

Sunday, June 5, 2016

Now what . . . ?

Chemo is complete!

Did you catch that?  I said, "Chemo is done! Finish! The End!"   After more than 250 days of fighting this beast, this part of the fight is over.  Chemotherapy treatment has been completed.  He rang that lovely bell.

Perhaps we are a bit over zealous in our celebrating, but when you've gone through all the poison, nights away from home, missed events, major surgeries and massive amounts of medicine that Mac has gone through, you want to go out with a BANG and you want to shout it from the roof tops . . . or at least from the side of your vehicle.  "MacKale's last round of chemo!"

Yes it was chemo week, but dang did we celebrate.   So the little boys came down to spend Mac's last day with him.  They went to hospital school  . . . .  (By the way, ummm hospital school had it's last day of school last Friday so 'why are we still in school?' . . . That's what the little boys want to know . . .)

We hip hip hurray-ed with our favorite Ortho PA (Love that Anne . . . ) . . .

. . .  loved on some spiky pets from the zoo . . . (it wasn't puppy week but hedgehogs are a pretty good second place . . .)

and when one of the other little girl, patients wanted to see all the boys on the floor get their nails painted . . . we wanted to see her smile . . . all three boys obliged.

Anything to put a smile on a 9th floor friend's face.

And continue to celebrate each day that we are able to be together at home, at school and with our friends and family.

But what does the end of chemo really mean . . . I mean really?  Aren't we so so so happy?  Well yes, we are elated and over-joyed . . . but at the same time I have to tell you what the end of chemo doesn't mean . . . Unfortunately, it doesn't mean that he is cancer free . . . we just don't know that yet.  There are scans that need to be done and those aren't scheduled until the middle of June.   Osteosarcoma is a beast.  I've told you this before.  It is relentless and frustrating and likes to come back  . . . especially in the lungs.  So we wait those scans on bated breath . . .  The scans will tell us if MacKale has 'No Evidence of Disease' (or NED)  I love Ned, I want Ned . . . Ned needs to come live with us and take residence in our lives forever!   So when you pray for MacKale . . . pray for NED.   Because of osteosarcoma's relentless personality, we will continue to have scans every three months for the first two years, then every six months until he hits the 5 year mark.  When you hit the five year mark . . . well that's when they believe you're in the clear for relapse.

Now you understand why I tell you . . . osteosarcoma is a beast . . . this journey is not a short one and we WILL celebrate every milestone and every day.  Because no matter what, each day that MacKale is with us, he is a survivor.

So we are living our lives!  MacKale and I are blissfully happy to be back at school.  Sunday night was like the first day of school for us.  I think we both were excited and a little nervous at the same time.  Mac mentioned . . . "mom, I can't remember when I have been in school five days in a row. . ."  I had to admit . . ."neither did I." I'm back with my kinder friends at Franklin and he's at the Middle School.  Most days he's there half a day so he can attend PT in the afternoon and he then shows up in my classroom at the very end of the day.  My sweet kinder babies remember him well from when he would come help them at the beginning of the year.  I was thinking that when they saw him they would comment about him losing his hair, but all they kept saying is " . . . MacKale, you got so big!  We missed you!"  Thank you my little friends.  This is why I teach kindergarten.   They always know exactly what to say.

He's sporting a new brace now too!  And  . . . drum roll please . . . wearing TWO shoes!  He's trying to put more weight on that leg  . . . and working towards getting mobile.  Because you know . . . there's golf to be played and camp and brothers to be bugging and . . . he just has stuff to do.  And we are so glad that is is excited and anxious to get out there and do it!

While it is so incredibly good to be home and away from the hospital, I will tell you, it is a bit of a doubled edged sword.  While we are delighted to be done with chemo, we are not naive about osteosarcoma.   I worry that because we aren't fighting the cancer actively with chemo, it will come back.  It makes me desperately miss my staff at DeVos, the experts that have supported, cared and held us up during this fight.  The love I feel for this people is to big for words, and I depended on them.

But this is where faith comes in . . . and this is where we put it to work. Yes, I have that nagging worry and fear in the back of brain, but I have to believe that God has our family in his hands . . . He will lead us through this with all of your help.

I started this blog to solicit prayers for MacKale during his fight against cancer, and I will continue to beg you for more and more and more . . . unrelenting prayers on his behalf.  We know this road is hard, but it has been bearable . . . sometimes even a pleasure because you have all been with us.  We can't do it alone.  I know that some folks are very private about their cancer fight and I respect and completely understand their need to be private.   Everyone deals with this fight in their own way.

We (or maybe it's more accurate to say "I" because, quite honestly, my poor family had no choice.  I was determined to get prayers for Mac.), for better or worst,  decided to lay it all out there -- all our fears--our treatment--the good--the bad--and the ugly, because we ARE weak and we DO need you. Selfishly, I can't imagine doing this without all of you.  So please keep us in your prayers.   We are not done yet . . . God isn't done with us yet . . . I told you I believe He will make something good of this . . . There still more to this story and we need you to be part of it.

Thank you always for loving us enough to keep us in your thoughts and prayers.  God has blessed us greatly with each and every one of you.