Sunday, February 21, 2016

Back To Reality . . .

If there's one thing that spending so much time in at the hospital has taught me, it's to appreciate the mundane.  . . noisy boys, a needy dog, running to the grocery store, making breakfast, getting haircuts for the little boys . . . going to church.  It's only been a week, but it's been a sweet week of freedom.  Sure we were back to Grand Rapids twice for a slew of doctors visits (When you have three surgeons and an oncologist it makes for a ton of appointments.), but even those long days couldn't dampen the sweet pleasure of being home in our own beds, eating boring home cooked meals, goofing off and hanging out with our family.

I wasn't really sure that we would make it back in time for MacKale's birthday last weekend.  We were scheduled to be released Saturday at noon, but on Friday night, MacKale spiked a 102 degree temperature.  I was devastated . . . heart broken and so upset that I simply wept.  I know what a temperature means.  The nurses kept coming in and each just said, 'I'm so sorry.'  They knew what that temp meant for us, too. We had been in the hospital four weeks and the thought of another mysterious fever keeping us from our home for the unforeseen future nearly tore me to pieces.  I called Mike to break the news and he and the boys packed up MacKale's presents and some decorations and headed down to be with us at DeVos.  I had a long talk with God.  I let him know that I wasn't happy, but that I trusted him to put us in the place we needed to be to keep MacKale safe.  I made peace with the fact that we would be in Grand Rapids for Mac's birthday, because at the very least, we would all be together.  

And in the meantime, MacKale's doctors drew cultures and ran tests and he had yet another CT scan to rule out blood clots, while he visited with his bestie Rylie who had come down to visit him.  We had made arrangements for a room for the boys and I, we had some plans for making MacKale's birthday as special as possible under the circumstances and we settled in for the weekend . . .  and then the doctor called me at 5:30 to say, 'you can go home.'

So we made it!  Home for his birthday!  It probably wasn't the birthday your typical 12 year old would think that was all that great, but when you haven't been home in so long and you've been hooked up to tubes and machines for a month, well watching an MSU basketball game with your dog and your family seemed pretty darn good to Mac, and it seemed pretty darn amazing to this momma too.  I had another long talk with God  . . . and thanked Him for  blessing MacKale with another birthday and for blessing us with this day together. 

As wonderful as it has been to be home, it has been anything but relaxing and easy.  Doctors visits sent us to Grand Rapids twice.  In addition to cultures on his new port to insure no new infections, checks from the nephrologist about his blood pressure and oncology clinic, both his plastic surgeon and sports othro surgeons gave him a once over and seem happy with the way that everything is healing.  He is getting stronger everyday and his mobility is improving, even if it's only baby steps.   While he will continue to be non-weight bearing for several weeks, his doctors did give him  the ok to start physical therapy and, even more importantly, SHOWER!  

It felt good to start PT.  Walking into Dynamic Therapy on Friday was such a huge relief for me and to see all the staff in Team MacKale shirts just gave him the added boost of confidence to know that Teri and the rest of the staff was there to help meet all those goals he has for himself . . .to get up, get walking and start doing all those things he loves.  I love that he is so anxious to get going.  I fear he doesn't realize the extent of all the hard work that lies ahead of him, but I told him that there would be days that he might hate physical therapy.  There may be days that it's the hardest thing he's ever done, but it's the ONE thing he can control and the more he puts into it, the more he'll get back.  Of course, if it was just rehab it would be one thing, but MacKale will be trying to rebuild his limbs and fight cancer at the same time . . . recovery may be very slow.  Please keep Mac in your prayers.  Pray that if the chemo does slow down his healing and rehab, that Mac doesn't become frustrated or discouraged.  He so desperately wants to just get up, get out and PLAY!

Until then, we look for other activities that MacKale and his boys can do together to keep him active and interested in moving.  Saturday, our friend Jeff Kohler invited the boys to come try shooting bow at a local archery shop.  MacKale has had some experience with using a bow at camp over the years and had been asking to get some practice before he got sick.  MacKale was determined to shoot despite being in his chair.  He said "Mom, it's not about being disabled or disadvantaged, its about finding a way to make it work and having fun anyway.' And for me it was about watching all three of the boys being able to do something together.  We continue to be  blessed by the kindness of friends and family who are always thinking of our boys.  

An afternoon movie with friends, church as a family on Sunday and time outside in the sun just about made the weekend as perfect as possible . . . normal, mundane, uneventful and wonderful. 

 But tomorrow we are back to reality . . . back to Grand Rapids . . . back to the fight of our lives.  So here we are, on the cusp of what we hope and pray will be the last half of chemo for MacKale, another 14 weeks.  Amazingly,  as much as I hate the thought of MacKale returning to the hospital to start chemo, I fear the day that chemo is complete.  I know it makes no sense, but cancer makes you crazy.  I'm living proof of that.  While I loved seeing MacKale's beautiful lashes growing back and have enjoyed watching him EAT and pick at his brothers, at least when he's on chemo, I know that cancer cells in his body are being killed, but when chemo stops . . . well  . . . that's when we stop fighting cancer and hope that everything that we've done has been enough to keep it at bay.  That's when we can only pray that all the cancer cells are gone and that they aren't lying in wait to rear their ugly heads again, to steal our joy, our mundane daily routines, boring existence, our precious boy.   I miss boring . . . I miss mundane  . . . I miss our uneventful, simple life, and I desperately want it back. But I am weak and human and flawed and I fear what will happen when the chemo stops as much as I hate how the chemo beats up MacKale's body.   Luckily .  . . God doesn't expect me to perfect.  He loves me despite my flaws and my fears.  He loves me when my faith is imperfect, when I cry, when I succumb to doubt and he understands that I'm a work in progress.  My friend Annie tells me that 'God loves the cry of the desperate more than a Hallelujah.  It is much more dear to His heart!"  I certainly hope he does.
So as for prayer requests this post, of course,  we request that you continue to pray for the cancer to leave MacKale's body once and for all.   But also please pray that MacKale will continue to have a strong and willing attitude as he begins the long road toward recovery and rebuilding the strength in his legs so that he can once again play and move.  Pray for McCoy and MaGill as they are faced with days without our family being whole.  It's hard to be away from their brother and parents, but these little boys are stronger and more resilient than they should ever have to be.  I miss them desperately when I'm away, as much as I miss MacKale when I'm away from him.  And finally, I will selfishly ask that you pray for Mike and me.   We desperately need your prayers for wisdom, strength and faith as we continue this journey with MacKale.  God is good and God is love and God loves us.  We will continue to hold on to these truths.

As always, we are so blessed to have the support and prayers of so many of you.  There is no way that we can ever repay your kindness and generosity, but some day, some how we hope to try and find a way.   

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.

Saturday, February 6, 2016

One bite at a time . . .

We were the first to enter the waiting room and the last to leave it last Friday at DeVos.  The day was beyond long . . . it was exhausting and emotional, but there was never a doubt in our mind that we were not alone.   Every single one of you were with us . . .  (hit play!)

While we weren't in Cadillac, we heard loud and clear from all of you.  The town had been tuned orange with support for MacKale.  We felt your love and love from all over the country .  . . Team MacKale was praying . . . cheering  . . . and supporting us near and far.  Mike and I sat in that waiting room with our phones blowing up from all the love . . .  and our minds.  In between those long breaks when we would get updated on MacKale's progress, Mike and I sat shaking our heads in disbelief . . . the shear number of people loving and praying for MacKale . . . no words . . . just lots and lots of tears from both of us.  We aren't sure what it is about MacKale that has spoken to people's hearts, that has compelled them to come together . . . to pray together . . . to react . . . but we know when we reflect on all of 'this,' God has made something good of this horrible situation and he continues to show us His love through all of YOU.  McCoy told his friend Rylan, 'every time we see a Team MacKale shirt, it tells us that someone is praying for MacKale' and he's absolutely right.  That's exactly what it tells us.  On days when we can't see an end, when we are all exhausted and fearful . . . we draw upon all of your love to see us through. 

MacKale's surgeon told us that he couldn't have asked the procedure to have gone better.  Everything was as expected.  The cancerous tumor was removed including a 17cm portion of his tibia and a 9cm portion of his fibula including all the margins of muscle and flesh around it.  Then in its place they placed a cadaver bone attaching all of MacKales own tendons and ligaments to the new bone and screwing everything into place, replacing his muscle with a muscle from another part of his calf and then sewing it all up including a shiny new skin graft for the hole where he was lacking some.

He came through it and was smiling the next day . . . even requested his favorite braunschweiger sandwich. But despite his always rallying, we are reminded daily of just how difficult and exhausting this journey is and how this wasn't just some little surgery.  

He started spiking a fever the second evening and it was determined that his new port tested postive for some kind of infection.  New worries and concerns for mom and dad.  New meds for MacKale.  But nothing that would slow down physical therapy.  Two days before he had major surgery . . . a large portion of his leg was removed and replaced . . . but there he was relearning how to stand and do all the things he needed to do to just get through the day.

It is incredibly painful for his leg to be down so he's back in a wheel chair for the time being, but even the process of getting into that is a major ordeal.  It takes about three people and is incredibly painful.  But once he's in it, at least he can have a little freedom.  He loves the little ones on our 9th floor and has his favorite little girls that adore him.  This little princess is constantly looking for MacKale.  She walks around saying . . . 'Mac . . . Mac. . .  Mac . . . '  

MacKale finally got to see his scar for the first time on Wednesday and get fitted for his new brace/boot.  The scar wasn't so upsetting to him but the pain . . . wow!  It was a pretty difficult process, but he rallied and knows that everyday will get better . . . every day we will take a small bite out of this enormous elephant that is this journey and we will get through it.

But eating your way though an elephant like cancer and limb salvage surgery is exhausting . . . so exhausting that sometimes, you even fall asleep mid ultra sound.  If you think that people go to the hospital to rest, it just doesn't happen. Even when he's 'resting' he is being poked and checked and moved and evaluated . . . So by Wednesday he had worked his fanny off with procedures and therapy and dressing changes.  He deserved something special, but it didn't come from me.

Instead it came from MacKale's pal, Matt (MSU #10) and his fiancee, Anna when they drove in from Lansing for a visit.  MacKale adores these two, and they are a blessing to us.  I'm not sure how or why this unlikely friendship occurred, but I'm sure that God had a hand in it.  He knew what MacKale needed and found the right person in Matt to provide that for Mac.  That to me is an answer to prayer and a gift.  MacKale was utterly exhausted but even so,  he kept his eyes open long enough to hang out with his favorite Spartan for a bit and show him and Anna around the floor. 

 I know they both have busy schedules, but despite that, they made the time to come see him and it made one exhausted little boy pretty darn happy. 

And so MacKale continues to fight through recovery one bite at a time.  We wake each day and  I tell him, we just have to chew off a little bit every day.  One less hose or wire connected to you, one less med, one more milestone reached, one step closer to getting home.  With the discovery of an infection in his port, that timing has become somewhat troublesome for MacKale.  The antibiotics to fight the infection are a 14 day IV regiment.  Of course, our first priority is for him to be safe and safe from an infection traveling to that new leg.  But it's frustrating for MacKale when he has a birthday coming up and would desperately like to be home for it.  So while our first prayer is always to rid his body of all cancer, our second prayer request would be to control and destroy the infection in his body, and our third would be to get us all home, safe and sound by the 14th of February, MacKale's birthday.  MacKale understands that this might not happen, and he also knows that regardless, we will all be together for his birthday no matter where that is.   

Some moments are easier than others, some moments are less painful than others, but every moment is a blessing because we have him with us and we have all of you supporting us.  Thank you for joining our team and being such a blessing to us.  If you ever doubt that your prayers make a difference, look what your prayers have reaped.  A week post surgery and this little Spartan is wheeling around his floor and cheering on his buddy Matt or as Mac now refers to him after the UM/MSU game Saturday,  "Tongue Waggin, Ball Slappin', Dr. Dunkenstein.'