Our Reluctant Home Away From Home

In the month of October, sixteen days were spent in the hospital.  Sixteen!!!  To say that DeVos has become a second home, our home away from home, is both a blessing and a curse.  We are so blessed to have the skill, the care and the comfort of experts and professionals that come as part of the package of being at DeVos---they are priceless.  And the building and facilities, are truly amazing.   But sixteen days away from your home  . . . your friends . . . your dog . . . your brothers . . . when you're a grown up, it's tough.  When you're 11years old, I'm sure it can feel like a curse.  We're back at the hospital again this week.  Week two of a three week in a row cycle, and it's the first time that MacKale actually said, 'I don't want to go!'  He's generally pretty resilient and doesn't complain much.   He's more likely to withdraw and say nothing than complain, which quite honestly, I'm not sure is better or not.  But last week after coming home from his first round of Methotrexate, he was feeling good.  He did all the things that we normally do and more.   He told the docs he needed to get out of the hospital and home.  He had a game to go.  His soccer team was playing their last home game, and he wasn't going to miss it.  It was fabulous!  Cold! Rainy! Miserable!  But fabulous!

Despite the terrible weather,  MacKale stayed toasty, warm and dry thanks to a borrowed deer blind.  Regardless of the weather though, it was so good to see his team playing again.  MacKale kept on telling me, 'They've really improved so much mom!  They're playing great.'  It was a happy reunion for him to see them for sure.  This IS his team.   Despite everything . . . these boys will ALWAYS be his team.  I'm so proud to have MacKale call each and everyone of these young men his friend.

I received a card from the team's parents that I keep my planner so I can read it often, because it just means so much to me . . . they wrote:
"You have family.  You have friends.  Your have a team.  Behind you in your endeavors and challenges.  We are all here for you now and forever."  

We love you too Cadillac Thunder!



He felt so good and, despite my dreading the horrible conditions, we even took him and the boys Trick or Treating!  It was wet, and Mike nearly dumped him a couple of times out of his wheelchair, but we had fun.  He kept feeling good. He had friends over, got his braces off (This will be a great help with mouth sores caused by the chemo.), went to school and even got in trouble for picking at his brothers in church...that's how I really knew he was feeling better.  And perhaps that's why, in addition to a million other reasons,  he didn't want to go back to the hospital this week--he felt good . . . things seemed good . . . so, of course, returning back to DeVos for chemo wasn't really high on his list of 'must dos!'

But if you're gonna kill the cancer, you need to have the chemo.

So we dropped the little boys off to school on Wednesday morning and MacKale and I
headed back down to DeVos . . .

across the bridge and up to the 10th floor to the infusion clinic.  Each time we go, we have kind of the same routine.  We check the question of the day . . .

(Mac usually gets these right.  I'm usually always wrong.  I think it's from all his years of reading everything that Nat Geo publishes for kids and from watching Wild Krats when he was little! By the way, I think the answer was five!)

Then it's blood pressure, temp and weight and height.  I don't get why they check his height every time we go in.  I mean he was just there 4 days before.  I can't imagine he's gotten taller or shorter in that amount of time but . . . who knows.

 I hold my breath for the weight, though.  MacKale is a solid kid.  I mean, he could eat before all this.  But now,  I work like a dog trying to fatten him up.  That first round of chemo did a number on his weight. and we have slowly been inching our way back up to a reasonable number.  Until then, he is getting a reprieve from my nagging about vegetables and  gets to eat whatever he is willing to put in his mouth.

Then we get our exam room and wait for his nurse to come access his port and get his IV started.  Accessing a port can be somewhat traumatic for cancer kids I'm told.  This is just another blessing that we count in this journey.  Because MacKale has had his port for hemophilia since he was 5 years old, accessing his port has never been a problem.  We were so fortunate that first of all, he has had one, secondly, that we didn't have to wait for an additional port surgery to get started on chemo.  We were able to start chemo right away.  And thirdly, we are thankful that we hadn't already removed his port.  MacKale had been self-infusing this summer and before he was diagnosed with cancer, we were making plans to have his port removed since he had started administering factor by himself through his veins.  We waited!  HUGE blessing!

Some kids with cancer come in to the clinic on an outpatient basis, but not kids with osteosarcoma. Once their port is accessed and their IV started, they are admitted and head to their room as soon as it's available.   The first 12 hours we are generally in 'hydration mode.'  No chemo . . . just a lot of fluid while we get his body ready.  Sometimes there's some 'events' that we can attend or take part in on those days that will make the time go by faster.

This week is the first Wednesday of the month, so volunteers from John Ball Zoo come with a few small animals.  This little fella was truly a 'velveteen rabbit.'  So sweet and soft.

And then there was this little darling . . .

no it's not a hedgehog . . .

but a Tenrick.  Don't ask.  I had never heard of them, but once again, Wild Krats had done an episode on them, and MacKale remembered everything there was to know about them.  (I need to watch more TV!)

Then, while he's feeling good and just getting fluids, I usually make him do some homework.  (I know, I'm so mean!)  But I'm just never sure when he'll be up to finishing it anytime in the next few days.  I totally get that it would be so much easier to just be in class with his friends completing his work.  It's NOT fun having to learn and complete assignments on your own when you're a kid that thrives on social interaction.   He does the work, but I know, he'd rather just be at school and in class.   In this case, I'm not ashamed to tell you, I totally bribed him.  I had pre-ordered the new Diary of a Whimpy Kid book, it had JUST been released the day before and had it with me.  I told him I would give it to him as soon as his homework was done.   Needless to say, homework got done!

 It was a busy Wednesday at the hospital though.  We also ended up with Star Wars visitors on the floor.  I can't even tell you how many little squeals of delight I heard.  We have kids older and younger than MacKale on the floor.  But I can guarantee you, even the parents were having fun with these guys.  That little R2D2 was completely remote control.  It was amazingly real.

My favorite though was Chewy.

It is wonderful to have these distractions for kids who are so sick and going through so much.  DeVos does a wonderful job at redirecting little ones, so that for a little bit, they can forget all the other not so fun stuff going on in their lives.  Is it horrible to have to be at the hospital? YES!   But they do the best job of making something horrible, at least sometimes bearable for a little bit.  And maybe even a little fun.  And they need a little fun because, as soon as the distraction is over and, in our case, hydration was adequate, it was back to reality.  Back to chemo . . .  and with chemo comes work. The kind of work that means trying to NOT be sick, making yourself drink and move . . .

 and be pleasant when you would just rather crawl into bed and sleep until it's all over.  But wait!  You can't do that, because there are machines going off . . . and buzzers . . . and with all those fluids going in, well you're waking up every hour to let them get out.  It can be utterly exhausting! Which means the rest of time you're there, it's often less fun and games and more like this . . .

and not so much fun.

But with the help of family, friends, community and the grace of God, we are working our way through our journey.  We still have such a long long long way to go, but  we continue to put one foot in front of the other, with a whole lot of faith and a little humor.

We try really hard to find the fun in whatever comes our way, and I kind of think that God has a bit of a sense of humor as well.  For instance, we were warned about all the side effects of chemo, but apparently God thought that MacKale should have the  sensitivities of smell and taste of a pregnant woman as well.  He not only has weird food cravings (Nothing but dutch apple pie, glazed donuts and sausage egg mcmuffins this week.  But never fear, it changes from day to day.  He'll hate those things next week!) . . .  but also whatever I eat, smells disgusting to him.   .   . anything.  This is what I get to look at if I try to eat in the same room with him.  Apparently, I stink. He's nothing if not subtle.

We cherish these opportunities for laughter and fun.  It makes these days so much more bearable. So while I ask for you to pray for God's grace in healing MacKale, I would like to also be so bold and a little selfish to ask that you add another prayer.  Please pray that while we continue this fight and this journey as a family, that we find lots of opportunities for joy and fun and laughter.  Our faith will sustain us, but laughter and joy will help keep us from losing ourselves in worry and fear. . .and it makes the time go by just a little bit quicker until we can get back to our 'real home.'