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!

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!

Busy Blessings!

The demands of a being busy is often a mixed blessing.  Are we often exhausted?  Yep.  Do we probably look like we need a nap most days? You bet.  But when our time is spent running to doctor appointments . . .  physical therapy . . . school . . . church . . . here and there . . . it occupies that part of your mind that often is filled with worry, concern and doubt.

Although MacKale is past surgery and working on healing his leg, he is still in chemo . . . he still continues to fight  . . . and being busy often means that we can all spend less time concerned about cancer and more time focused on living.

That blessing of being busy has never been more true than these last couple of weeks.  Coming off from his 'drag your levels into the ground' chemo, we were surprisingly busy.  Oh we were holding our breath almost every second of the day and night trying to avoid an additional hospital stay, but avoid it we did!  Mac was able to attend school a couple of days, church, physical therapy and more . . .a lot more!  

It was back in either November or December that my brother Terry (Uncle Moff to the boys!) called and asked me if Mac would want to go to the Big Ten championship in March.  You have to understand, we can't make plans.  Remember, we have good intentions, but never plans.  It's just not possible to know when or if MacKale will end up back in the hospital for some mystery fever or something else.  So I said, of course he would love to go, but you know . . .

Uncle Moff secured tickets understanding that there was a good chance it wouldn't happen, but he would have them anyway.  And the closer we got to championship time . . . the more it looked like MacKale was going to make it . . . 

And he did . . .

It was an amazing weekend that he and Mike will never forget.  It was busy and crazy and so wonderful.

He got to spend some precious time with his dad and Uncle Moff.

And thanks to the good people at Dr. Pepper, Todd Bowen and Kevin Benefiel, who provided tickets for Mac and Mike, they had a front row seat to MSU's Big Ten Championship weekend. These gentlemen were so thoughtful. I can't even begin to express our gratitude for their kindness.

Yea, I kind of think they couldn't have had better seats if they were sitting on the announcers laps.

Both Mac and Mike couldn't believe how close they were to the action.

At one point, the MSU cheerleaders came and found MacKale.  They had been following his story and they were more than happy to snap a photo with him.  What I found out through an email later that evening is that the cheerleading squad's coach, Eylse, has a sister who was an organ donor and had also helped someone just like MacKale was helped, with a lower limb cadaver bone.  For me, it was such a gift to be able to thank someone for such a selfless gift even if her gift didn't go directly to MacKale.  While MacKale didn't receive her sister's bone, he received a similar gift from someone else and Eylse was able to see first hand what that precious gift can mean to someone like MacKale.  I told her how I struggled with praying for a cadaver bone, and Elyse assured me that, for her family, donating her sister's organs was the easiest decision they had to make.  It was incredible to make the connection, and I am so grateful that she was able to reach out to us.  She gave us the gift of peace and perspective that can only come from a donor family.  Thank you Elyse! 

Of course, there were some other special folks he was able to spend time with as well.  The Costellos and Matt's fiance, Anna, are always so generous with their time and incredibly kind.  I'm not sure if Matt realized when he befriended MacKale that he would ended up having to share his family with Mac or if his family realized they would have to share Matt with MacKale, but, somehow, I think God knew what he was doing.   

What an incredible opportunity to cheer on his beloved Spartans as they became the Big10 champions.  I can promise you, this is some of the best medicine MacKale could ever have.  

Matt was incredibly thoughtful and found MacKale right away after the victory and even shared a piece of the net with him.

I wish I could bottle that smile and the excitement in his voice when he called to tell me all about it.  It was priceless . . . and more than we could have hoped for.  .  . all because of the kindness of others who made this experience possible and special for MacKale.  How do you ever repay that?  You can't . . . you simply look for opportunities to pay it forward.  And that's what we promise to do!

Definitely a blessed and busy weekend that was the best medicine for this boy!

The day they got back it was on to the blood drive that the local Jr. Rotarian, Interact and Youth Advisory groups were putting on.  The 55 units that they were able to collect was divided into three separate units each and end up helping over 160 people.

Our hearts were so full, I thought we would burst.  160 lives helped!  To all showed up or helped out, thank you.

And then, it was time for a different kind of 'busy' and we had to go back . .  . back to the hospital and back to chemo.

Mac with his favorite hematologist/oncologist, Dr. Mitchell.  Photo by Chris Clark

 It's a process going in for chemo. . . access the port, start fluids, meet with doctors, move to your room, update your meds, hydrate, wait, and start chemo.   MacKale had some discomfort the first 24 hours this time around, but was wide awake by 2pm the second day to catch the Spartan's NCAA game against Middle Tennessee.

Photo by Chris Clark

Yep!  It was heartbreaking.  But probably not for the reasons you think.  MacKale's heart broke for his friend.  He was worried about Matt.  MacKale loves this team, unconditionally!  Would it have been nice to have had the chance to watch them play basketball for the next several weeks . . . something to keep us busy and divert our focus from cancer? Absolutely!  But disappointed in his team?  Never!

You should probably know, neither I nor Mike are MSU alumni, and I, personally, have very little loyalty to any sports team, but our family will forever be Spartan fans because of these young men and, yes, specifically because of Matt.  Right now, I understand that those young men are hurting, because maybe they feel like they've let down their families, their friends, and fans.   This is so far from the truth, though.   They may even feel like they have ruined their 'legacy.'  I would argue, however, that the 'footprint' they leave behind is much more than this one game.   We feel incredibly blessed to have had the opportunity to share in the journey of their basketball season this year.  Their legacy, however, is not only everything they've accomplished on the court, but, even more so, what they have accomplished off from it. They have been simply the best medicine we could have ever hoped for MacKale, and that's a pretty great legacy if you ask me.  Yes, they are amazing athletes, but they are even GREATER young men.   How many athletic programs can say that?  Coach Izzo and their parents should be commended for the impact they made.

And  so when the game was over and our tears were dried, I could see that 'impact' made on MacKale come full circle.

In true Spartan fashion, MacKale picked himself up and immediately was compelled to go 'play' with his little buddy next door.  She's two.  She loves 'Mac.' And the nurses purposefully placed MacKale next to her room so she could be close, to him, but she's isolated due to treatment and can't come out and play.   So this is what he did with her.  .  .  You tell me if this isn't a full circle moment . . . He's had some great role models to follow.

All of these things that keep us busy, also keep us moving forward and working through this journey. These busy days are a blessing,  but eventually the quite moments do catch up to you.   And it's in the darkness of the night that 'worry' finds you the most.  Worrying about tomorrow is an occupational hazard for a parent of a child with cancer . . . In those dark hours of the night at the hospital, your mind drags you into the depths of doubt and you can only pray that exhaustion will eventually take over and relieve you from despair and worry by granting you the gift of sleep.  It's in those quiet moments of restlessness that we pray the hardest for guidance and peace for it's then that we remember that we are still fighting a battle, and we realize that this journey is a long one, but it's also during those times that we can reflect and give thanks for those busy days.  The busy days that keep us moving forward, allow us to interact with friends and loved ones and remind us that we are NOT alone! We are blessed. 

"Therefore do not worry about tomorrow, for tomorrow will worry about itself.  Each day has enough trouble of its own." -Matthew 6:34

Please continue to pray for our family.  Specifically pray for the chemo to kill the cancer in MacKale's body and never return, allowing him to heal and grow and become a blessing to others as he has been blessed by so many wonderful, caring people in his own life during this journey.

Pray for our little boys as they are often separated from either Mike or I and MacKale. They are the unsung heroes of this journey.  They are flexible and funny and forgiving and resilient.  Even when I only have the energy to serve a bowl of cereal for dinner, they are grateful and understanding.  I'm so proud of them and thankful for their precious snuggles.

Finally, pray that we have many more busy, productive days and that we find peace in the quiet moments, wisdom when we don't have the answers, and that we learn to trust without question whatever it is that God has in store for us.

Prepare-Plan-Rejoice

There are so many parts of our lives that have been altered by the diagnosis of MacKale's cancer in September.  You develop new 'norms.'  What was normal before can never be . . . glimpses of that life are still evident from time to time, but as a whole, you create a new 'normal,' and that normal for us meant developing a new way of functioning for our family.  Consciously or unconsciously, we now prepare - plan- rejoice.  We prepare for anything and everything.  We plan on nothing.   And we rejoice in pleasant surprises.

Prepare

Preparing for everything is pretty much a full-time job.  It means always having a full gas tank. It means carrying around medical papers and a calendar with appointments and 'levels' carefully documented.  It means having emergency numbers on hand, having someone on call for the boys 'just and case,'  and  it means that our bags are never unpacked.  When Mac and I come home from a hospital stay, clothes are washed and put right back in those bags so that at a moment's notice, we can be headed to Grand Rapids.  We've learned this lesson the hard way from experience.

When you undergo chemo for the first time for osteosarcoma, it feels like they release you with a bunch of medications you've never heard of before and you're not quite sure what they do, but they send you on your way because, let's face it . . . they can't go home with you and hold your hand even if you wish they would . . . and you are completely unprepared.  It isn't true, but it feels like you get your papers and your permission to go home and tell you to come back in two weeks.  You leave thinking 'wow, really?  We get two weeks off.  Great!  I totally got this'  But you know what?  You're not 'prepared' for what's to come.  No matter how prepared you think  you are, no matter how much they prepare you.  What they really should say is 'here's your discharge papers and your meds.  You're going to have to figure out which works the best in which combination for your child because, quite honestly, no two kids are a like, and, oh yea, make sure they don't throw up too much or get dehydrated.  But who are we kidding, we will see you back here in a couple of days when they spike a fever. Now repeat it all back to me. '  It's not the hospital's fault.  Really, the hospital and nurses are amazing.  I'm sure they told us everything we needed to know, but at that point I don't think we heard much, and we certainly didn't know what we know now. We were  just unprepared.  And no one can prepare you.  And so you learn to keep your bags packed.

As a mom, being prepared also means that you basically carry a suitcase with you everywhere you go.  In my purse, you will find the usual wallet, gum and chap stick . . . along with vomit bags, several bottles of medicine,  a thermometer, baby wipes, masks, hand sanitizer,  tissues, an iPad, ear buds, chargers, Epi Pen, inhalers, medical papers, our cancer planner/calendar,  ace bandage, several parent name bags I have failed to turn in or lost over the weeks of staying at the hospital, a bottle of juice or water, jolly ranchers or mints, an oatmeal creme pie (or whatever MacKale has decided he can eat that week--it changes daily)  and at the very bottom, without fail, my keys.

 Instead of diaper bags, they need to make cancer bags for moms who have to carry so much around with them in order to be 'prepared.'   But after months on this journey, I think when I leave the house, I might just be ready.  Just don't ask what I have in the Durango . . . basically anything that doesn't fit in a purse plus a wheelchair, crutches.

But we have become much better at being prepared, and this has made our 'normal' much easier.

Plan

Planning is easy.  We don't!  We don't plan on anything anymore.  It has become our new norm to have 'good intentions' instead.  We learned quickly that when we 'plan' on doing something, it just leads to too much disappointment when and if it doesn't happen.  So instead, we tell the boys  . . . 'our intentions are to have Christmas at home, but we are prepared to be at the hospital.'  Or we intend to be at school to pick you up, but you know, things can change.  Is there still disappointment?Absolutely, but it is much more manageable.   It doesn't matter so much about what we do or when we do it, as long as we can all be together.  

Photo by Kevin W. Fowler for the Lansing State Journal

MacKale had great intentions of being at the MSU vs. Maryland game to cheer on Matt.  That was a tough one to miss.  It was THE game of the season for Matt.  But ya know, when we headed to the ER with a fever the night before, MacKale completely understood that it wasn't going to happen.  

'We aren't going to be able to go to the game MacKale.'  '

'I know, Mom.   It's ok.  We can try and make it to a different one maybe.'  

We had good intentions of making it to another game.  We knew that Mac wanted to take McCoy and MaGill with him to see his beloved Spartans play, but we just couldn't bring ourselves to plan on it.  His port failed and he had an additional surgery to remove it.  The new port had an infection which caused his stay after surgery to be extended two weeks longer than normal.  He was so weak after and then he started chemo back up; the yucky kind of chemo that puts him back in the hospital 8 days later.  The season was running out and our good intentions were running away with them.   Mike and I really didn't see how we could make it happen.   

Rejoice

But sometimes you get pleasantly surprised . . . sometimes you are unpredictably blessed.  And when that happens . . . you rejoice and give thanks.  We rejoiced when we were able to spend Christmas at home and when MacKale was able to be home for his birthday.  These were all wonderful blessings.  

But last week,  was tough.  MacKale was weak after chemo, Mike and I had been struggling with accessing his new port, and we didn't really have intentions to do anything but stay home. 

But we took a chance and secured tickets to MSU's last basketball game of the season.  The tickets weren't even all together.  The game was basically sold out.  We weren't sure if MacKale was going to be well enough or if we could even get seats that would accommodate him as he is still in his wheel chair for long distances. So with all that stacked up against us, we decided not to tell MacKale or the boys.  Mike and I had good intentions of going, but we were very prepared if it didn't happen.

But then . . . it did! 

MacKale was feeling good . . . still weak but good.  We had traveled to Grand Rapids on Friday afternoon to get some port training and let the cat out of the bag then.  We told the boys, we intend to go to the game tomorrow and we intend to be able to trade in our tickets for a handicapped spot for Mac and we intend to have an amazing time . . .  I handed my phone to MacKale and told him to go ahead and 'tell him.'  So he texted Matt . . . "guess where I'm going to be tomorrow?"

We were able to turn in our tickets for handicapped seating for MacKale with a bonus of all of us being together.

And so we rejoiced and counted our blessings . . .

and cheered on MSU and Matt.

Prepare-Plan-Rejoice

Despite all our preparations though, we know that we can only focus on what is at hand today.  Yesterday was a gift and tomorrow isn't promised.  All we can really prepare for is to accept whatever comes our way with the faith that we are not a lone on this journey.  God is with us each step, and he has brought you all along for the ride.  We can only plan to make today the best day possible, to try to make a difference in the lives of others, to open ourselves to the opportunities that God presents us to 'do good.'  And we can always rejoice in all things . . . 'again I say rejoice!'  (Phil. 4:4)  There is so much good to be thankful for . . .

We have a long journey ahead of us still.  So we continue to ask you to pray for MacKale's body to be healed from all cancer forever,  to make it leave his body and never return, please pray that his rehabilitation provides him to regain the ability to play and move, and that our family remains strong and steadfast in our faith.  You continue to strengthen us with your support and prayers.   I know I say it every time but truly, there are no words to express our gratitude.   

Go Spartans!