Thursday, April 28, 2016

Will It Be Too Much?

This week marks seven months . . . seven long arduous, months that our family has been on this cancer journey with MacKale.  When I think back on that first stay in the hospital, those days when we were confirming MacKale's osteosarcoma diagnosis, it all seems a little surreal.  We were absolutely clueless, in shock and numb.  But there he was, thumbs up and ready to take cancer on. That's Mac!

By the grace of God, we survived those first days, and, somehow, things have now become familiar here at the hospital and days can even be almost comfortable.  Devos has become our second home. We know our nurses' names, we depend on them, and think of them as part of our family.  They represent security and feelings of safety for us.  Likewise, names on the doors of the 9th floor rooms belong to faces of  patients we know and who are traveling a similar journey that MacKale is traveling.  We hold them in our prayers each night and root for good levels and clear scans.  The doctors . . . well, you know we adore Dr. Mitchell, but really, all the docs are familiar and marvelous each in their own way.  Of course, the doctors joke and tease MacKale, which he loves, but, let's face it, he is often the master jokester himself.  He's clearly very comfortable with them.

The security folks recognize our name when we check in for our badges.  Child Life volunteers know that Mac is a card shark, and we have met all the therapy dogs and have learned to request our favorite one when they visit.  

We have our favorite patient rooms, we know which ones have the hottest showers, which are the biggest and which ones have the most comfortable pull out beds for parents! (Yea,  that would be NONE!)

I personally have developed a keen sense of  knowing what time there isn't a line at Starbucks, I greet my baristas by name and  they know my order without my telling them " . . . venti vanilla chai latte for Marsha (that's with a 'sh' not a 'cia')--extra hot!" It's not my hometown Java, but it works in a pinch!

We know where they hide the big Styrofoam cups in the nutrition room,  how many laps around the 9th floor it takes to travel a mile, how to ask for the best chap stick and we know when the best time it is to try and do a load of laundry.  

We've also developed a keen understanding of medications and 'levels' . . .  white blood count, hemoglobin, platelets, magnesium, phosphates potassium and ANC. 

We know which meds work best for which chemo in deterring nausea for MacKale, and we have a highly sophisticated routine for working Methotrexate out of his body that involves massive amounts of liquids, walking (or crutching) and music.  

Even when those walks last late into the evening when everyone else is sleeping.

These are all highly valuable bits of information, I assure you.  And while all this familiarity and intimate knowledge of the workings at Devos has made things infinitely easier at times  . . . I could, quite honestly, do without it.  It's really information I could have gone my entire life without mastering, and I would be ok with that.  

I would much rather go back to the way things were when I lived in my little 'cancer ignorant' bubble. When juggling, work, home, boys and boys activities were our greatest challenges.  When Mac was healthy and mobile and whole.  

But this is our life now and this our journey and we continue to put one good foot in front of the other . . . 

  .  .  .  but I will tell you, though, as 'familiar' as we have become with cancer . . . there are days . . . many days when we are simply weary! 

There are days that we are still flying 'blind' and when I wonder if 'all this' will be too much for me, for Mike, for MaGill and McCoy and most importantly . . . will it be too much for MacKale?  Will all 'this' effect him in such a way that it makes him, not 'him' or us not 'us' anymore.  . .

Today, is a day when we are weary!  Our last two rounds of methotrexate, our easy chemo, have left us weary.  We are typically rock stars at this chemo.  We know what we need to do.  Mac sleeps as soon as he gets his chemo, then he walks and drinks for two days straight and then we knock out our levels and go home in record time.  But these last two treatments, despite our regular routine, have taken longer . . . it's been more work . . . more time away from home and we are weary. 

On top of that, at some point in the middle of the night last night, MacKale's body decided to spike a fever . . . then it didn't  . . .  and then it did . . . again.  When you're in the middle of 'the fight,' there is absolutely nothing worse than being blind-sided.  Fevers are frustrating enough.  They mean disrupted sleep and extended stays and extra pokes.  We were both exhausted and frustrated and emotional last night and yet, when they came to do an extra peripheral poke on MacKale  in the wee hours of the morning to rule out infections, Mac was compliant and polite and helpful and sat right up and chatted it up with the tech.  He was 'Mac.'

"Here use this arm.  This vein is a good one, see?  Now, you tell me when you're ready, and I'll hold my breath and close my eyes.  When you see that, then you go, ok?  My Grandma Shirley taught me this when I was really little . . . like when I was 3 I think . .  if I just sit on my other hand, close my eyes tight and count to ten, it's over before I can count to 3 or 4."  "You ready?  Ok!" "You did really good.  I hardly felt that at all. Nice!"

He's still in there!  Despite exhaustion, frustration and feeling down . . . he is still 'him' . . . 

Yes! We are weary and we might not exactly ever be exactly 'us' again and MacKale might never be exactly the 'Mac' he used to be, but perhaps, all "this" is God's plan to make a better . . . a stronger 'us' and make Mac a stronger, more amazing 'MacKale.'

"He gives strength to the weary and increases the power of the weak.  Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength.  They will soar on wings like eagles; they will run and not grow weary, they will walk and not faint." -Isaiah 40:29-31

As for prayers . . .

Your prayers are precious to us.  Please continue to keep us in your prayers.  Pray that we will find strength during these days of treatment, that the chemo kills all the cancer in MacKale's body, pray that he will soon be able to be mobile and continue to heal.  I can only continue to believe that God will turn all of this into something good.  Thank you all for being our rock and strength when we get weary!

Thursday, April 14, 2016

Shut up and listen!

Last April, this was the scene as I walked with MacKale and Gilly through Downtown Disney.  We had an amazing time.  So fun!  It's difficult not to long for those days where things were easy.  Getting in the car.  Going to a restaurant.  Taking a vacation.  We were whole, we were together and we were healthy.  I ask God to have those things for our family again. I know comparison is a thief.  I get that.  But I still long for those two good legs attached to a healthy and cancer-free boy.  I ask God for it daily.  In fact,  the truth is,  I talk to God . . . A LOT!  I don't just mean that I say my daily prayers.  Of course, that's part of it, but . . . I mean I talk to God . . . like all the time. . . in my vehicle, at the grocery store, doing dishes, at the hospital . . . I'm talking to Him.  There was a time when AT&T had that friends and family deal.  Remember that one? Where you could have unlimited calls to all your friends and family.  Well if that deal was still around and God had a cell phone, he'd be number one on my list and AT&T would be losing money on me.  Which is a bit ironic really, because if you know me at all and my family with attest to this . . . I absolutely HATE talking on the phone.  However, I will talk to God . . .  But talking isn't the problem.  It's the listening part.  That's where I struggle.  And quite honestly, with all my talking, some of the problem is that God can't get a word in.

But I'm working on it . . .

When MacKale got his diagnosis in early October, it was literally just a few weeks from the date that Mike and I had secured accommodations and purchased our flights for this year's Spring Break. While we might have thought about it for a half a minute, we kind of just knew that this year's vacation was going to have to be a wash.  Our first priority, our only priority was to be with MacKale and fight this fight.  (Note to self:  Never forget to purchase travel/flight insurance!  Just saying . . .)

I have talked to God daily over the last 6 months.  I have begged, pleaded, sought council, given thanks and asked for guidance, but I never bothered asking for our Spring Break plans to come to fruition.  It just wasn't a priority.  But then . . . I wasn't listening.

Despite months and months of chemo and treatment, in general, MacKale has been able to find distractions and things to keep him looking forward and putting one foot in front the the other.  The doctors warned us that after surgery, when chemo started back up again, he may become 'weary' and disheartened.  In the past, we had football and then basketball to keep him occupied and engaged, but suddenly that all ended.  These next months were going to be some of the hardest and longest.  The hospital stay was boring, wearisome and long.  It was time to get serious about physical therapy and, yet, we are still non-weight bearing and chemo slows down the healing process. And speaking of chemo . . . yes, there is still more chemo.  Suddenly, I was having new conversations with God.  I was asking for stamina and focus and strength for MacKale to keep working through treatment.  I talked to Him about protecting MacKale and his brothers' spirit, their joy and their sense of humor.  I asked Him to keep our family whole despite days and nights away from each other.  I asked for guidance to make all these things happen. And I talked and I talked and I talked . . . but I wasn't a very good listener.  (I don't admit this very often, but I think Mike is a much better listener than I am. )

Until, our doctor asked about our plans for Spring Break.  Of course we told her that we had made plans to visit Florida, but had understandably decided that wasn't going to happen this year and we were ok with that.  But she wasn't and neither was He.  Dr. Mitchell gave us every reason why we could and should go.

And so despite all my fears, anxiety and nervousness (and I have a ton of them, just ask my husband) . . . I listened!  And we went.

God had answered all those prayers and responded to all my 'calls.'  MacKale's only request the week we were gone was to do 'stuff with my brothers.'  He told me, "I've gotten to do some fun stuff mom. But I want to be with my brothers and do stuff with them. "  And that's what we did . . .

It wasn't 'the same.'  And the realities of MacKale's cancer were often very evident.

I've a new appreciation for handicapped accommodations, and I still despise manhandling our wheelchair, but it was a week of healing.

But we were together.

We laughed.

 We danced and played.

 We ate (too much) and played a ton of putt putt (Mac's working on his short game!).

I heard MacKale singing with his brothers.  I saw him teasing and picking at them.

They wrestled even when I told them not to . . . and we were whole.   It was an answer to prayer.

It revived us.  It strengthened us.  It connected us . . .   It isn't always easy to expect great things to happen, to expect answered prayers in such a fabulous way.  You kind of are in a habit of just holding your breath and bracing yourself for the worst,  but I'm working on learning to expect God's infinite grace, learning to accept his divine wisdom and  . . . on becoming a better listener.

"Listen for God's voice in everything you do and everywhere you go.  He is the one that will keep you on track."  Proverbs 3:6

Special Prayer Requests:  We were scheduled to start chemo this week, but MacKale's levels have been too low.  This is never good.  It pushes us back and lengthens the journey.  However, God has impeccable timing.  It has made it possible for us to be home for MaGill's First Communion this weekend.  Please pray that Mac's levels bounce back and chemo can resume next week as planned, that physical therapy continues to strengthen his leg, and that the cancer will leave his body forever. 

Special thanks to our friends, Jackie, Amy, Jenna and Grandpa Woody for coming along for the ride.  Love you guys!