Christmas Blessings and a Happy New Year

They call it the 'Cisplatin Blues.'  I despise the days following cisplatin chemo.  Those days leave Mac lethargic, unresponsive, quiet, withdrawn and sometimes 'blue' which is not something that we often see from him.  These days leave me holding my breathe in anticipation of things that 'might' happen.  These days make me anxious, cause me to pack our bags just in case, walk around with vomit bags and a thermometer in my purse and they keep me from letting my gas tank fall below 1/2 full in anticipation of  . . . fevers, infection, plummeting levels and other things I may not have yet experienced on this journey.  They cause me to feel like I am constantly on the edge of a cliff, teetering . . . waiting for the other shoe to fall.

These were the days before Christmas for us.  Those days that are usually filled with uncontained joy in the anticipation of family and celebration, left us on edge.  Because you see, historically, 8 days after cisplatin, MacKale would end up back in the hospital.  Christmas eve was 8 days after.  All day long we kept waiting.  We were ready.  All the gifts had been wrapped and packed for two days before in anticipation of spending the holiday in the hospital.  Regardless of what happened, whether we ended up at the hospital or at home, Mike and I made arrangements to make sure we would celebrate Christmas as a family . . . together.   But then Christmas eve day came.  MacKale said, 'Mom do you think you should take my temperature?'  So I did, but nothing.   It was normal.  Then as the day went on, MacKale would say.  "I can't believe it.  This has been the longest I've ever made it. "  Mentally we were all prepared, MacKale, McCoy and MaGill all were ready if we had to go.  But the day went on and night time came.  When we headed to bed on Christmas eve, MacKale said 'I can't believe I made it.  I really made it.  I'm going to spend Christmas at home aren't I?'  And as I kissed him good night, we said a little prayer of thanksgiving for a gift we didn't think we would get. Christmas at home.  He wasn't 100% or even close, but still, we were together and home!  God gave us the best gift ever.

It was a quiet, incredibly peaceful day with just the five us at home.  The boys were able to open their gifts, play, nap and be together.  It was EXACTLY what we all needed.  I was very protective of MacKale during that time.  I was still holding my breath. I knew his levels were low, low, low.  So we stuck to ourselves and stayed at home so that we could avoid returning to the hospital.  I knew that Mike's family would be arriving in Cadillac from Seattle and downstate in just a few days, and I wanted to do everything I possible could to insure MacKale and the boys would be able to enjoy the time their cousins while they were here. 

Monday came and as anticipated, MacKale's levels were low enough that we needed to get him back to DeVos for a platelet transfusion, just in time for a nasty storm.  I could drive and be a nervous wreck or stay home and wait with the little boys and be a nervous wreck . . . I let Mike have the honor of driving.  

But they made in back . . . in one piece and by the next day, MacKale was feeling a little bit better.  Better enough to hang out with the family and participate in his favorite pass time of eating  (Thank goodness for appetite stimulants) and cards and pigs and spoons.  I actually heard belly laughs coming from him for the first time in weeks.  I started to exhale . . . but just a little.

And Santa showed up . . . just when you thought he was done for the year . . . he made a special visit.

Who knew?  He's a Spartan basketball and Matt Costello fan, too!  

He stayed long enough for a quick picture and was off to his much deserved vacation.  

Liam Allan, Palmer McGuire, 'Papa' Jim McGuire, Craig Allan, Scott McGuire
Jenna W, MacKale, Cori Allan, Grandma Lucy McGuire, Val Allan, MacKenzie Allan, Me,
MaGill, Santa, McCoy, Rocco M, Romi M,
Mike, Milo and Jessica McGuire

And MacKale continued to feel good . . . good enough for a snowmobile ride.

Good enough to gather an arsenal together  .  . . 

for a full family . . .

 . . . full on . . . nerf gun war!!!

And good enough to end the night with Uncle Craig playing and Cori leading a little sing along.  It was a full . . . FULL day, and he was feeling good.  That liquid gold . . . those platelets were doing their job for sure. 

Having family in town really pulled MacKale out of that state of being 'blue.'  I was so amazingly grateful to see glimpses of the boy I knew and love interacting with friends and family from before all 'this. '  It was the medicine he needed to find himself again.  This is the boy I knew that wasn't about 'I can't' and more like 'why can't I?'  So when we headed to the YMCA for pickle ball, he had a plan and he played . . . better than most of us. 

The family that plays pickle ball together . . .

. . .  and Pie Face together. . .

 . . . and Just Dance together, laughs, and giggles and loves and heals together.  And I could breath a little bit better . . .  things almost felt normal.

And if you have any doubt that MacKale sat out of any of these activities, I have proof that he didn't.  Not only did he do 'couch' Just Dance, but he won every time . . . just like when he had two legs to beat us.  That competitive streak was still alive and well.

It wasn't just MacKale that felt the healing power of being with family and friends.  We all felt it.  Mike and I and the little boys. . .  all of us needed that time together and it was sad to see it end . . . we had to sneak in a couple of last minute snuggles and gummy worms with cousin Liam before they left.  

It was almost the perfect Christmas.  I mean if you asked the boys they would tell you it was the best Christmas ever . . . MacKale would say it was the best Christmas ever except for one thing . . . his beloved Spartans weren't able to pull it off during the Cotton Bowl, but that hasn't swayed him.  He's still hard and true a green and white fan.  He's just diverted his attention to basketball for the next several months.  Go Spartans!!!

And so we made it.  By the grace of God and because of so many of your prayers, we had the Christmas we prayed to have for MacKale and the boys.  It was amazing.  The blues have pretty much past.  MacKale is feeling probably the best he's felt in many many weeks.  He's been funny . . . I've caught him singing . . . and he's been picking at his brothers.  All the things that are music to this momma's ears.  Tomorrow he heads off to school for a few days before we start back up again with chemo.  As much as I wish that I could freeze this time and hold on to these moments, the snuggles with all of us in bed together (I've discovered we really need to get a king-size bed), the tickle fights, board games, hot cocoa breaks and lazy long naps in the afternoon, I know that we need to continue on this journey. God has been so good to us this year, but we still have so far to go in MacKale's journey.  We need to put our game faces back on and prepare for battle with cancer.    

So as we prepare for 2016, while most people are making their resolutions and attempting to 'fix' all the broken things they don't like about their lives, our family has decided to take a pass on resolutions.  Instead, as I also told my Differentiated Kindergarten blog readers, I am taking a cue from my teaching partner Kerri and I have chose to focus on one word.   This will be my focus word for the year.  My word to get me through when I don't think I can breathe.  The word that will sustain me during all those hours on the road between here and Grand Rapids and all those nights I sit waiting for MacKale to feel 'better' in the hospital.  This year, my word is FAITH.  There has never been a time in my life that I have needed it more, that I have needed to share it with my boys more . . . I know these days ahead will not be easy for any of us and they will be especially difficult for MacKale, but we have to hold on to our faith.  There will be days when I won't breathe.  I know that.  But I have to have faith that some how, some way, God will bring some good of all this.  I pray this faith will sustain us and keep us strong.

A special thanks to everyone for all the blessings you have given us by following MacKale's journey in 2015.  Please keep us in your prayers in 2016.  For the immediate future, MacKale has two more rounds of chemo and then surgery scheduled for January 29th.  I will, of course, keep you posted as the days come.  

We ARE the Vikings!

Sometimes, there just aren't any words to express how you feel, or your feelings are so big and so overpowering they just don't make words that big.  You know that whatever comes out, it's just not going to be enough.  Whenever I think of our community, it seems that way.  I am currently struggling with MacKale's shirt post, because I don't feel like I have the right words so it sits half finished.    And then this post feels much the same way.  I have so much to share, but conveying the magnitude of what I feel, is often a struggle.

Photo from Cadillac News

Mike wrote on his Facebook page: "What does it mean to make a difference . . . this is how you do it!"

When people ask what we need, we always say 'your prayers.'  But quite often, it is easier for other's to see what our needs are than for us.  This week, our Viking family, the athletic department, boosters, coaches, staff, students, fans and players of the boys' basketball teams knew exactly what MacKale and our family needed.

Coach Ryan Benzenberg

A couple of weeks ago, the Viking's varsity coach, Ryan Benzenberg, contacted me.   He relayed to me that his varsity team had been following MacKale's journey and was praying for our family.  They wanted to invite MacKale to be an honorary captain for the team at a home game in a couple of weeks.  Although it's always hit or miss how Mac will feel, we looked at his chemo calendar and based on the type of chemo he would be getting around that time, we thought the timing would be perfect.  He would be in between two doses of the 'lesser of two evils' chemo, and he usually felt pretty good.  It was a great event for him to look forward to . . . to work toward.  You don't realize how easy it is to just let life happen all around you when you are in cancer treatment.  You could easily take treatment behind your closed hospital door and when you come home simply sit and shut out the rest of the world.   But MacKale hasn't typically worked that way.  He loves these little goals to keep him moving forward.    So the basketball game was always in the front of his mind.  When we were in the hospital last week, he did everything he needed to do to get out in record time so he wouldn't miss it.  It was important to him.

What we couldn't anticipate was how hard a virus he picked up the first few days of December would be working on him.  He has literally been fighting it for nearly two weeks, and Monday night, it decided to rear it's ugly head in the form of a low-grade temperature.  Now a low grade temp to a normal kid is no big deal.  For a kid with a port in their chest, however, it can be a sign that there is a dangerous infection brewing.  We had to rule out a port infection so away we went to the hospital.  Usually a temp means that we will be heading back down to Devos for admission and Mac knew this.  He saw me packing our bags in anticipation.  He was, of course, devastated.  His disappointment weighed heavily on me, but through our tears of disappointment, we said a little prayer and headed into the ER to get blood draws and levels checked.

Our little prayer was answered, and  it ended up that there was no infection, his levels were very good and we could go home to sleep in our own beds.  He rested and felt pretty punky for most of the next day, but no temperature so he wanted to rally for the game that night.  I knew he wasn't feeling 100%, but I also knew, that unless he had a temperature, there would be no keeping him home.

And I'm so glad we made it, because not only were the Vikings in full Team MacKale gear, but all of the Ogemaw Heights players were too.

Falcon Coach Eric Spencer

You want to talk about a class act basketball team, the Falcons are it.  Coach Eric Spencer made it a point to come over and greet MacKale and our family.

From beginning to end . . . it was a magical night for all of us but especially for MacKale.


He was part of the captains meeting.

Captains and Referees Meet

And was able to sit right up front with the team to catch all the action.

Each time a player entered or exited the court, they made sure to acknowledge him and his brothers with a smile, a tap of the hat, or knuckles.

Those 'big high school boys' didn't have to . . . but they did it.  And my boys thought they were pretty awesome.

Just like their high school classmates didn't have to gear up in orange, but they did it.  And my boys thought those big kids were amazing.

With so much noise that pollutes our attention with negativity about kids today, I feel so compelled to tell you that I am proud to have my boys emulate and look up to these young Viking men and women. They were kind and generous with their time, and they made MacKale feel pretty incredible despite feeling pretty rotten physically.  It was selfless and genuine, and I know what a blessing they are.  That's something we can't take for granted in our community.  They are SUCH an amazing asset to have.

Viking #22, Tyler poses with MacKale.

So after the game was over, Mike and the boys were invited into the locker room for a little post game chant, and as I waited outside, a woman approached me and introduced herself.  She mentioned that her son's name was Matt Costello, and he plays for MSU's basketball team.  His cousin, Keagan,  plays for Cadillac, so he had heard about MacKale and was wondering if he could Face Time with him.  I'm not going to pretend that I knew who Matt Costello was at the time.  Honestly, I wasn't really confident that MacKale would know who he was either, but when MacKale came out from the locker room, Matt's mom approached Mac and said, 'My son Matt Costello plays for MSU and would like to Face Time with you.  Do you know who he is?'  Cool as a cucumber MacKale says, 'Yea, I know him.  He's number 10.'  Don't ask me where he stores this information, numbers and stats about players from sports, because it boggles my mind.  I just have no idea. But I do know who Matt is now, and I won't forget yet another young man that went out of his way to reach out to MacKale.

MacKale Face Times with Matt Costello.

The whole event was really so remarkably well thought out.  The organizers considered every detail to make it special, not only for MacKale, but for MaGill and McCoy and Mike and I as well. At one point I looked over at MaGill with his eyes as big as saucers and he just said 'Wow Mom.' McCoy said, 'I know!  Right! We are so blessed aren't we?" And then he said,   "Why are we so lucky?"

I don't have an answer for McCoy, but I know that he's absolutely right. . . despite everything, we are so very blessed because honestly . . . this level of support is nothing short of a miracle.   Many kids and families face cancer alone.  They don't have help, they don't have a school family or community to support them.  It's uncommon!  It's extraordinary!  It IS a blessing.  We see kids every week at the hospital that close their shades and hide away from the world, because, quite honestly, cancer treatment is horrible.  But MacKale is out there.  His shades are up.  He's interacting and smiling because "it takes less muscles." He's facing his journey head on . . . even on those days when he doesn't really feel like it and we have to pull him 70 % of the way and it's not an A+ effort,  he does it.  He does it not because he's better or braver or has some special personal quality that other kids do not possess.  He does it because he knows all of the amazing support that this community and his Viking family has given him through acts of kindness just like this special evening.  It has given him the confidence and the feeling of safety to know that he is not alone and that everyone IS praying and fighting with him.  It makes my heart swell with pride to be a teacher in this district.

And I know, adults often grumble and are disappointed with kids these days . . . But I'm telling you, when a community of students and their coaches and teachers come together to show a child that he is loved and supported, God is there, and we are blessed.  We know this road will not be easy.  It will be painful and difficult to watch MacKale go through the days ahead.  It will be so hard to watch MaGill and McCoy go through it as well, but we still have to believe that God will make something good from MacKale's journey.  And this is just one way . . . through these young people.  They are such a gift to our community.   And as for Mike and me (Viking Class of  '85--Yes we are really that old.) and MaGill, McCoy and MacKale, we have never been prouder to say, "We are the Vikings."

Please continue to pray for MacKale and especially pray that the chemo will successfully rid his body of the cancer for good.



A special thanks to Sue Donahue Baker, Deb Rensberry and Chris Huckle for allowing me to 'lift' their pictures to use in this post.

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? 

 "Yes."   

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.