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.