Saturday, December 12, 2015

T'is the Season For Some Blessings

Christmas is quickly approaching which is sending me into a bit of a panic mode and also explains why I have been a bit negligent in writing these last two weeks.  This year is the earliest that we've had a tree up in the house.   It's was warm enough and MacKale felt good enough to go with us to pick one out. 

It really is a big, gorgeous tree . . .

And we actually had it up right after Thanksgiving, but two weeks later . . . it still lacks lights or ornaments.  Time seems to slip away without us realizing it and finding time when we are all together in one place is a precious commodity.  So when the Hem/Onc Department at DeVos invited us to their annual holiday party at the Grand Rapids Museum, we thought it would be a perfect opportunity to take full advantage of a family night with all of us together.  Our goal the week before was just to keep everyone healthy.  No sniffles or coughs so that we wouldn't get any of the other patients sick and also to have MacKale's levels high enough to ward off anything himself.

I'm not sure if you've ever seen the museum all decked out at Christmas, but it was so lovely.  The entire place was open for our Hem/Onc (Hemophilia/Oncology) Families to enjoy.

 And, oh my gosh, it was fun . . .

And boy, did we need a little fun.

And this was all because of the individuals who care for MacKale and our family.  It is mind boggling to me.  Here are these amazingly, smart and educated physicians and nurses who could simply do their job each day and leave the hospital and our kids behind and we would still be so grateful for all they do while they are here at the hospital with them.  But is that enough?  Not when it come to our DeVos docs and nurses.  They go above and beyond.  Each year they put on this huge party for the Hem/Onc families, and each year, Doctor Axtell, writes and directs a play staring all our favorite doctors, nurses and all the other people who take care of our kids everyday!   They practice on their own time and put together this unbelievable production.

This year's title . . .'A Very Jedi Christmas.'  

People!!!!  This is a MAJOR hour long program . . . they even dance!!!! And they were good . . .  I mean REALLY good.

. . . and, of course, the Star Wars theme was a huge hit with all the kids.

And why do they do it?  All for our kids.  You can never tell me that this is just a job for these folks. I know . . . I believe that they love our kids and care so much about making them happy!  And we are just so incredibly blessed  to have them all caring for MacKale.  It was such a great evening for us to be together before MacKale had to start chemo again the next day.  A special treat for sure that actually put MacKale in great spirits for his next treatment.   And he needed it because his second day into treatment, he got the 'ISOLATION' status for having a rhino flu of some kind.  Sure, a stuffy nose and cough probably isn't a HUGE deal to the rest of us, but to the kids on our floor who struggle with being able to fight off any little virus, it's a pretty serious deal.  So while we were stuck in the room, we were at least still able to have 'the cousins' come and play for a bit . . . 


and there was a football game that needed to be watched, of course.  Even isolation couldn't squelch the excitement that had been brewing for him all week, because, of course, MSU was playing.  The one good thing about being in the hospital when MSU has a game is that I know, for sure, no matter how bad MacKale might feel, he will not allow it to interfere with his watching 'the game.'  He always rallies.

We started getting messages early in the morning from friends making sure that MacKale would be watching the game, but the best one came from his Uncle Moff who lives in  . . . of all places . . . IOWA.  Moff has kept his head shaved for MacKale and in support of Mac's beloved Spartans, he even painted the top of his head . . . WHAT!!!!  

I can tell you in all honesty, I AM the bad cancer mom that allowed her son to stay up until well past midnight to watch that game when he should have been resting, but, you know what, we had so much fun watching it, I don't regret it a bit.  I might regret the fact that his blood pressure was 150/90 when the nurses took it about 10 minutes before the end of the game, but everything else was worth it.   And boy was Mac happy.

The funny thing is that our 'child life' pal at the hospital, Rhys, is a HUGE IOWA fan, and MacKale was dying to give him a little grief over the game . . . but you know . . . we were in isolation  . . . so I had some paper and markers smuggled in from the outside world and Mac came up with a poster to put on his door.   

His pal Matthew had sent him some funfetti in Spartan Green and White and when Rhys came in to see MacKale after the game . . .

 . . . he may have, kind of funfetti bombed the poor guy.  

Luckily, Rhys is an amazingly good sport and the excitement of the game got MacKale so motivated that we were able to spring ourselves from the custody of the ninth floor a little earlier than normal.  

He may have had a miserable flu virus with a nasty cough and runny nose, but he was a mighty happy camper to get home.  

It had been a challenging stay to be in isolation, for sure.  MacKale wants to be out and about even when he's getting chemo and feeling terrible.  He likes to be able to get out and walk around the floor, wave at the other patients through the windows and chat it up with the nurses.  Even though he avoids it and never wants to go if I ask,  when Rhys calls him to go to the hospital classroom each day, he does so he can meet new kids and play games after their homework is done.  So this last weekend was tough, but good news always makes tough situations a little easier to take, and we were able to get some good news to off-set it.

During that stay, Mike and I had the chance to meet with MacKale's surgeon about the plan for Mac's leg.   Initially, we had planned to have some kind of surgery at the end of December, but things had gotten pushed back. We had been waiting for his doctor to return from a conference in Europe where he had asked if he could take MacKale's case and present it to his peers.  Although he had a good idea as to what surgery he thought would be best for Mac, he was interested to hear what other surgeons might think.  Basically, it was like getting 26 second opinions that confirmed his plan . . . and this is why we love Mac's doctor!  He told us that we had several options to choose from . . . none of them right or wrong and that ultimately, it would be our decision, Mike, MacKale and mine  . . . We had the option to amputate.  There was a new procedure called rotationplasty (Look it up . . . it's kind of amazing!  I mean REALLY amazing!) or the surgery that he proposed for MacKale which would take the tumor and a section of his tibia along with margins and replace it with a cadaver bone.  Then with the bone, he could rebuild MacKale's leg.  Mac would be able to salvage the growth plate in his femur and his own knee.  

Of course, I really wanted to know what the surgery meant for MacKale in terms of mobility, because these are the questions that Mac is always asking me.   I knew that I was going to have to tell MacKale exactly what his limitations would be so that there wouldn't be any surprises.   It was probably going to break his heart, but he needed to understand all the different choices and what they meant.  So I asked his doctor . . .

With this surgery would MacKale be able to ride a bike? 

Will he be able to golf?  
"Yes.   He will never be a 'runner' but he will be able to run around and kick a soccer ball with his brothers.  Not competitively, but for fun."

But surely he won't be able to ski ever again?  
"I anticipate that, although perhaps not in the same way he did before, MacKale will be able to ski again!"   

WHAT!!!!!!  Skiing?  Of course all of this is anticipation and speculation, but, nevertheless, heavenly to hear.    MacKale will, of course, have a long road of physical therapy and rehabilitation, but  . . . 'he will be able to play again.'  And really, in addition to removing the cancer completely from his body, that is all I could ever want . . . just to have him play . . . with his friends and his brothers like a regular 11 year old boy.  

The only problem is . . . we didn't have a bone and, as you can imagine, a child size bone is not as accessible as perhaps an adult size one.  We needed a bone and we needed a bone in time for him to make his surgery date.  The doctors had already scheduled to pull a set of chemo treatments to the front side of surgery to buy them some time, but we really needed all the pieces to come together and it needed to be soon.

I'm not going to lie and tell you that it was easy for me pray for a bone for MacKale.  I mean, of course, I prayed.  I prayed hard, but  I was very conflicted.  Of course, I want him to have his leg, and I want him to have the best possible situation for surgery, but I also know in my heart that my son getting a bone means that another mother somewhere has lost a child.  Her loss would be my gain.   How can I pray for that or ask someone else to pray for that?  I couldn't bring myself to put out a prayer request for a bone to the masses, but I made the request from our immediate family . . . I needed to trust that God would understand my need and my desire to keep this request close to my heart.  And He did.  

Before we left for home, we got the news that a bone had been found and secured.  Not only that, but we have a tentative surgery date for the end of January.  We still have such a long road ahead of us, but these small victories make it easier to keep fighting.    They assure us that God has us in his hands, and  is providing all that we need . . . even when we don't realize we need it.  We are truly blessed.  I look at MacKale and wonder how he does it.  How he goes through the pain and the sickness, the disruption of his young life everyday and how does he do it with a smile on his face and without complaining.  He told me, 'there's always something to smile about, mom.'   He's right!  We have so many reasons to feel joy and feel grateful for how much we have been blessed.  There really is always something to smile about.

Please continue to pray for MacKale, and  pray specifically that the chemo is able to remove all evidence of disease from his body.  We know that God hears your prayers and that he will find some good to make of all this.   


  1. Thanks so much for letting us know what's been happening the past 2 weeks. I'm sure it's not easy for you to fit everything in. I understand your conundrum about the bone. That's a tough situation. I will continue to pray for MacKale, specifically that the chemo is able to remove all evidence of disease from his body. Sending love, hugs, and prayers!

    1. Thank you so much for your continued prayers Lori. You are a might prayer warrior and amazing friend.

  2. Always so excited to see another blog post - Marsha, you are an incredible writer, and while I struggle at times to read what you're writing (even after 13 years it still brings back memories of a scary time!), I'm thrilled to get the updates on how MacKale is doing.

    I LOVED reading about the party at the museum, it was always a highlight of the Christmas season for us, starting the year Melanie was diagnosed, and continuing until she'd been off treatment for a few years (I think we probably went each year for about 5 years). The first year always sticks in my mind though, she had just lost her hair and started her rough chemo, but she, Kristina, and Alex put on their holiday finest and had a ball. I can still see that little bald head in her fancy party dress running from one thing to the next. And oh, those shows. We loved those shows. Dr. Axtell was Melanie's main oncologist, and to see him, the other doctors, and the nurses being so silly (and talented!) on stage was priceless.

    Rhys is also a favorite - he's been there as well since the beginning and Melanie always adored him. If you ever think of it tell him we said hi. What a great guy!

    Thank you also for updating on the medical front. As a nurse, I'm always curious about what the plan is. How wonderful to have so many choices and other physicians weighing in. However, I also know that it can be very difficult to have choices - sometimes it's better to have someone just say "this is what we need to do". That's great that while there will still be some limitations, there will also be a whole lot that he WILL be able to do. What hope!

    Sorry so long again - I always have a lot to say! Please let us know if there's anything you need. I only work Mon-Thur and have a lot of spare time now that my kids are older. Christmas shopping/wrapping, help with transportation for the other kids, anything. I'd be happy to help.

    Take care, and know as always that you're in my prayers.


    1. Thanks so much for reaching out Kathi. I hate that you know all these wonderful people, but am so happy (selfishly) to have people who understand where we are on this journey.

  3. This morning as I was reading your post on my ipad, my 3 year old very wise grand daughter asked me what I was reading. So I said, "remember my friend Mackale who we pray for? This is about him." She wanted to see all the pictures. She too loves the carousel that we visit in Shipshewana. She loved hearing about each thing that was happening in the pictures. Especially the confetti and the man with the writing on his head. She and I have prayed for Mackale on several nights when she spends the night with me. She's very intuned to doctors . . . she thinks she knows it all because Doc McStuffin has taught her all about it. I hope knowing that Mackale is touching even a 3 year old, gives you even more faith. Haven't stopped and won't stop praying for all of you.

    1. I am so blessed to have such wonderful prayer warrior friends Patty, and you're one of the best. Thank you so much Patty.

  4. With out ceasing! Never ending! Miss Deedee says HI!!!!!!!

  5. I'm overjoyed to hear all of your good news. Still saying lots of prayers for your family. MacKale looks great and I hope the 5 of you get a little extra family time together over the holidays.

  6. Marsha we are thinking of you, Mac and the whole family every single day. I am so happy to read this good news. I'm sure it's so difficult to know your blessing means someone else's loss but know that whoever that person is feels so good knowing they are giving the opportunity of life to Mac. Wishing you all a beautiful and blessed holiday season. Many hugs from us!

  7. Marsha we are thinking of you, Mac and the whole family every single day. I am so happy to read this good news. I'm sure it's so difficult to know your blessing means someone else's loss but know that whoever that person is feels so good knowing they are giving the opportunity of life to Mac. Wishing you all a beautiful and blessed holiday season. Many hugs from us!

  8. So well written, speaking of reading through the tears! Prayers continue. I was so impressed the with the craft show at Franklin today. :)

  9. I think and pray for you and MacKale often, Marsha. I know we have never met, but I feel that somehow we know each other.... Take care of that wonderful boy... I truly feel that God is on your side... Cindy

  10. Thanks for your update, Super Mom. Our daughter was the recipient of cadaver bone years ago following an ankle tumor and now dances like a wild woman. Caused us to upgrade our organ donor cards, that's for sure. We continue to pray for the McGuire clan. Even did so at our extended family Christmas gathering this past weekend. Glad to hear you are being treated so well by the DeVos CH folks. They are amazing indeed. Hugs all around. Helen

  11. Great update! Glad those Sparty's could make it happen for MacKale! Prayers, and Prayers and Prayers! Have fun at the Basketball Game.