Thursday, February 11, 2016

Ash Wednesday -- A Season To Rejoice

My sweet from Sarah from Educlips made this sketch of Mac.  

It's been a bit of a roller coaster week here at DeVos.  I was able to spend Friday and Saturday night with the little boys while Mike stayed with MacKale.  McCoy had a 5k race that he ran and I was so happy to have the chance to be there to cheer him on.

McCoy ran for Mac with his hat and sweatshirt.  26.32 min 5K.  

But by Sunday morning it had become very evident that two weeks was just too long for us all to be apart as a family.  So I packed up the boys and we headed down to the hospital to spend some time together.  It was cramped and noisy and chaotic and wonderful.

Fun at the Children's Museum

The little boys and I spent part of the day Monday while Mac was busy walking down to the children's museum and then the rest of time 'playing' on the 9th floor.  They met his doctors and nurses and child life specialists and friends.

Meeting Mac's sweet little friend.

 Memories were made and we were whole again, if only for a the day.

McCoy and MaGill found ways to occupy themselves on the 9th floor. 

So when Tuesday came it was a bit of a let down for Mac and I.  He has struggled with being here for so long but has continued to rally.  I think Tuesday, it just all came to a head with a bout of emotion and homesickness.  We had lots of tears, but with a little help from some of our ninth floor friends, we picked ourselves up, got out of our room and found ourselves in a better place.  Mac says, ' . . . sometimes you just need a good cry and a hug . . .'

MacKale and his sweet friend (big sister) Hannah.
So by the time Wednesday came, Ash Wednesday, we were feeling renewed.  I'm sure that Ash Wednesday means something special to everyone.  It is a reminder that this life on Earth has an ending.  Many practice the act of giving something up during Lent as a recognition of Christ's fasting for 40 days.  However, that part of Lent has never really spoken to me.  I'm not sure why.  But giving up a something I loved . . . potatoes for instance--that was a rough year--only to get it back in 40 days didn't really make me a better Christian.  I think it made me someone miserable to live with though.   But regardless,  I'm not a theologian.  I don't have all the answers and being raised Protestant, I definitely am NOT an expert in all things or anything Catholic.  All I  know is how the season of Lent has spoken to me, and how it speaks to me especially this year.  I think of Ash Wednesday and Lent as the time of year that we are especially reminded that we need to make the most of the life that we have been blessed with and during this time we are reminded that our goal may not be to suffer like Christ by giving something up, but perhaps to become more Christ like and be more Christ-like every day of the year.  Be kinder, be more cognizant of others around us, count our blessings for what they are and not what they are not, be gracious, be gentle, be giving and rejoice in all things.  All areas that I personally struggle with everyday.  Lord knows I struggle . . . but regardless of how much I fail in these areas, I still feel the need to 'do better' and make it my goal as I start out this first day of Lent.   So these are the thoughts I started my Ash Wednesday with . . .

It was a busy day.  Mac got up and moved to his wheel chair and we did our daily laps around the floor to check on friends who had been discharged or admitted.  We waved and played with our baby friends and then headed to PT.  The big goals for the day was to work on how we would get into our house once discharged.  MacKale's leg is still immobile.  He can not bend it and the brace is super heavy.  So to lift it, he has to use his upper thigh and hip.  It's tough . . . really though and it wasn't necessarily pretty, but with the help of PT we made it up four steps and down four steps with crutches.  A reason to rejoice!

After PT we headed to school.  MacKale hadn't had much energy to complete assignments until this week, and he had some catching up to do.  His hospital teacher, Sarah, and he were able to take a big bite out of what was due.  That overwhelming feeling of 'how will I get it all done' was beginning to be replaced with 'I got this.'  A reason to rejoice!

The Aquinas Track and CC team mates showered MacKale with gifts galore.
MacKale had visitors from Aquinas College yesterday, too.  They had collected items from each of the athletic teams at the school and presented Mac with a plethora of goodies.   He was showered with Aquinas love. Fun fact:  MacKale's babysitters Erica and Jenna attend Aquinas as did his Grandma Sandy McGuire.  It was a fun surprise. The kindness of others never ceases to amaze us.   A reason to rejoice!

The reasons are there everyday, I just think we need to try harder to find them.  It's not always easy.  It's definitely easier for us to get swallowed up in our own despair.  I know that I have had that happen over and over again these past many months of this journey, but Lent has reminded me to find reasons everyday to rejoice.
My sweet teacher friend, Cara Carroll, from First Grade Parade, does Bible journaling.  Her entry on this date seemed perfect and beautiful.

When we began this journey, there were milestones that we had to work toward and have been able to cross off as we travel.  One of the biggest milestones was this first of MacKale's leg surgeries and with it we would submit his tumor to find out exactly who well the chemo had been working.  This is called the necrosis level.  The higher the necrosis level of the tumor pathology, the greater amount of the tumor is dead.  A dead tumor tells us that the chemo is doing it's job and we are on the right course.  There is no change to treatment that needs to be made.  Surgery is tough enough, but I'm not going to lie, waiting to get that pathology report has been brutal.  Wednesday as I headed down to grab something quick for lunch, Dr. Mitchell called me.  She was in MacKale's room with MacKale and had some news for me but Mac wouldn't let her share it with me over the phone.  Finally she convinced him that neither she nor I could possibly wait the 10 minutes for me to get back to the room and she relayed the news that MacKale's tumor pathology came back . . . 99% necrosis.  99% of the tumor was dead.  That doesn't mean he is 99% cancer free, it doesn't mean that he is in remission, nor does it mean that he is cured or won't relapse.  What it does mean is that the chemo is working, it's doing the job we need it to do and we can continue with our plan.  MacKale had a great analogy . . . He said, "it's not like we're in the final four or we've won the championship, but it kind of feel likes being MSU and beating Michigan like we did.  It's a sweet victory." A reason to rejoice.

So yes, we still have another couple of days left in the hospital before we can home, but we are scheduled to get home Saturday night.  A reason to rejoice!  And we still a long road of chemo ahead of us, but we have a week off before it starts up again!  A reason to rejoice.  And there will be more scans and CTs and unknowns and surgeries and PT, but today, MacKale is happy and healing and moving forward.  Reasons to rejoice.

MacKale and therapy dog, Bullet.

And, of course, one of our greatest blessings is all the continued prayers and support from all of you.  You have made this incredibly difficult journey less weary with every single prayer.  If you ever doubt that your prayers are heard, remember 99% necrosis.  God is listening.

The note on our door says it all!!!

Our prayer requests continue to be for MacKale to be 100% cancer free, for the cancer to leave his body once and forever.  Everything else . . . is second to that.  And while you are praying, there are so many other 'friends' on the 9th floor of DeVos that could use your prayers as well.  Cancer is something a child should never have to endure.  Our prayer is to put pediatric oncologist out of business and make childhood cancer a thing of the past.


  1. Thank you for the update and all the inspiration you provide as your family moves forward. I've been following and sending prayers as you head home very soon! Yay for 99% :) Jen

  2. Thank you for the update! Our family has you in our thoughts and prayers daily! Love and hugs! :-)

  3. Thank you for the update! Our family has you in our thoughts and prayers daily! Love and hugs! :-)

  4. So many reasons to rejoice. I will continue to pray for the end of this cancer and strength to get to the finish line!

  5. I love hearing this great news! It means our prayers are being heard and answered. Hugs to you all!

  6. Thanks for sharing--such an inspiration to all of us! Going home on Saturday means MacKale will be home for his birthday, correct??? That's an answer to prayer as well! I know the Lord will continue to bless you all with his love, his peace, his grace, and his healing!!

  7. Love love love love love reading this!! 99% !!!!! Woohoo!!! God is good, God is faithful! Love you! I am praying daily. :)

  8. Great news that MacKale continues to improve and the prognosis is looking better. Continue praying for a total recovery.

  9. Thank you so much for the updates on MC. Thank you for the honesty, and your strength, God's involvement, and the truth that all of the community is involved....praying with this young exceptional man. Blessings.

  10. Praise the Lord! 99% necrosis! I will continue to pray! What a great piece of news.

  11. This is such great news! And home for the birthday and Spartan win. Must have been that visit from the Aquinas Saints! Hugs and continued prayers. James and Helen

  12. I am just a fellow kindergarten teacher following you in the blog world (who now has 6 kinders who know more then 220 sight words thanks to you) and I cannot get MacKale out of my head. I am praying for you and him and the whole family. I am pretty much the opposite of you, I was raised Catholic and am now Protestant. I LOVE seeing your boy's first communions and everything they are doing. I may have to go back, because there really is something special about Catholicism. I can't put my finger on it. But it is there and it is real. I just wanted to let you know I am still, and will continue to be, praying for MacKale. PS I want to buy a T-shirt!

    1. Oh Sarah, thank you for your note. You're not JUST a kindergarten teacher. When you pray for MacKale, you are part of our family. Thank you so much. We may have opposite experiences, but don't really think it makes much of difference in the long run. My dad used to say, "I don't think they have special sections for Protestants and Catholics in heaven. We'll all be dining at the same table full of Christians!" I think he's right. Thanks for continuing to pray.