Wednesday, May 25, 2016

Do you 'Wonder?'

You know what it's like to want something desperately . . . to work a long time and very hard to get it and to have it just out of your reach . . . to keep moving towards it and to have it keep moving just beyond your reach?  That's kind of what getting to these last two rounds of chemo has been like.  We've been doing this since September 29th . . . 238 plus days . . . 90 plus nights away from home . . . fighting this beast!

We were suppose to start our second to the last round of chemo last week.  But the after effects of chemo from earlier this month were reeking major havoc on MacKale's body.  His platelets were low low low . . . so he needed a transfusion.  It was off to DeVos we go for liquid gold and hopes of renewed levels.  But then he developed nasty, painful mouth sores on top of low levels.  He could hardly talk, wasn't eating and then he decided to take a tumble in the bathroom.  Almost instantly,  he was sporting a brand new bruise.   I just knew that his levels still weren't bouncing back.  Mac felt it too.  So we checked his levels earlier than we had planned and sure enough . . .  Back to DeVos we went for a second round of platelets plus a side of blood.   And it meant . . . further delays . . . but at least it was time at home.

Sometimes you have to fight the dog for a spot in the sun . . . or just snuggle in.
The great news in all of this is that he never developed any fevers which would have landed him back in the hospital. . . no infections  . . . and with the extra doses of blood, platelets and several days of neupogen shots, he was able to build back his strength, heal his mouth and get a little extra physical therapy in before we finally started chemo Monday.  Plus . . .

 . . . work on the robot he got from his new friend Colton . . .

and start working on his short game with his brothers.

But now, we're finally here at DeVos, counting down our days until our final treatment until we can be, God willing, done with chemo.  But even now that we've started our second to the last round and we are heading toward the finish line . . . it's taking us longer than we anticipated.  MacKale's body just isn't flushing the chemo out the way it used to.  His body is tired, it's been poisoned and pushed . . . So that even now, when he used to be able to 'clear' the methotrexate from his body in 60 hours, it is taking sometimes a day longer (and hopefully not more).

Cancer has stolen 90 plus nights away from home over the last 8 months.  I could be very angry about that, and there are days that I worry about what that time of being separated will do to our family, but then . . . there are times that I know that cancer has provided me with some amazing gifts that I would never have if it hadn't so rudely invited itself into our lives.  Gifts like lessons learned and time . . . time with my 12 year old son that many mothers never get, and the chance to learn so much from him.  Granted, a great deal of what I learned was about MSU football, MSU basketball, how the draft works and which team was ranked in which spot during a particular week.  But beyond that, I gained so much more.

I'm a Kindergarten teacher.  Hazards of being one means, you tend to be well versed in all things "Dr. Suess," "Piggie and Elephant," and "If You Give A . . . " books.  You read with small children daily, but as time goes by, those small children tend to be someone else's child. Oh sure,  I read with my own boys when they were little, of course.  But there comes a time when suddenly, thanks the amazing ability of their teachers to instill a love of books in them, they read on their own and that sweet cuddle, bedtime story time that you once shared is kind of over.  MacKale, unfortunately, started reading independently early, so while he would read to his little brothers, those times of reading together for us were really cut short for me and him, or maybe it's just, I didn't appreciate those precious moments when I had them.  But I do now!

In early fall, when Mac was first diagnosed with osteosarcoma, one of his soccer buddies, Ethan, gave him a gift that included the book Wonder by RJ Palacios.   "This is a great book mom!  We read this in Mr. Main's class last year."  But the book went on his shelf  . . . forgotten . . . as life started to get hairy and scary and reading for pleasure seemed out of the question.  It had become difficult enough for MacKale to read for any period of time just to keep up with school.  He would fatigue easily and become too sleepy to keep his eyes open.  Where he used to love Language Arts, it had suddenly become a struggle because of the effort it took him to just have the energy to read.  So . . . I started reading his assignments to him.  Snuggled up in his hospital bed or at home on the couch, we read together . . . and it worked.

And then a couple of weeks ago, Wonder caught his eye on his shelf.  "Can we maybe take Wonder to the hospital with us and read it mom?  I think you'll really love this book."

I hadn't read it, but quite honestly, he could have asked me for just about any book to read with him and I would have jumped at the chance.  But this book . . . I just can't tell you what a gift it was for me . . . of gift of time with Mac, insight  and lessons learned.

So the premise of the story is that a young boy, Auggie, who has a genetic disorder that has caused his face to be disfigured.  He has never attended school until he enters Beecher Prep Middle School.  Personally, I thought middle school was one of the toughest times of my life as a kid. We are all so awkward stuck between being a little kid and a teenager . . . suddenly we are separated from our elementary school friends and it's a bit like being thrown into a big ol' fire.  It's hard to get comfortable, but being a kid that is somehow 'different' or who looks different . . . man . . . that's just adding to the anxiety of what middle school can often be for a kid.  So the story of Wonder kind of follows this boy's experiences transitioning into this world of middle school while looking so different from his peers.

So each night, before settling to bed, this has been the book we would read together.  At one point in the book, Auggie's teacher ask the students in his class to write what the precept, "Fortune favors the bold" means to them.  When was a time you had to be brave and by doing so, something good happened?

When we got to this part, Mac stopped me and said, "Mom, this is kind of like me having cancer.  I mean, cancer is horrible.  It's really not good at all.  But because I have had to be brave and have treatment and get pokes and come to the hospital, a lot of really amazing things have happened that might not have happened otherwise."  

Yea, Mac.  It's kind of like that.  Good things like having your friends, school and community come together and support you .  .  . good things like making a great new friend and getting to attend the Big Ten Tournament to watch him play ball . . . good things like making new friends at the hospital and getting to know the nurses, docs and other patients  . . . our 9th floor friends.  "Fortune favors the bold."  Lesson number one that I learned from Auggie (and Mac):  'Be brave!  You never know how great things could turn out if you do!"

Mac and his sweet girl friend.

And then at the end of the book, the author talks about kindness.

"Mom, this is the best part.  I love that 'be kinder than necessary' part.  I think that's so important.  I don't always want to do it and I'm not always good at it, but we really need to . . ."  

Man, I don't always feel like it either.  In fact, I have often failed miserably at it in my life, but if ever needed to see an example of 'kindness' I certainly have seen if from all of you this year.  Time after time . . . seemingly endless acts of kindness.  The kindness has worn off on MacKale . . . it has motivated him to look for ways to put a smile on someone else's face . . . even if it's a bit out of his comfort zone.   When Dr. Mitchell presented him with the challenge this week to 'go make some kids smile' by donning a Tutu for Tutu Tuesday, of course, he accepted the challenge . . .

World's Best Oncologist --Dr. Mitchell dons her tutu with McCoy and MacKale
and so there we were . . .

with the help of McCoy they walked the floor giggling and waving in the doors of the patient rooms . . .

. . . being silly and attempting to put a smile on someone --anyone's face.

Lesson Two from Auggie (and Mac): Even though you don't always feel like it . . . even though it might be tough, find a way to do something good for someone everyday.  Make them smile.  "Be kinder than necessary."

Honestly, we are so anxious to be done and we're trying to have the best attitude we possibly can while waiting impatiently to complete this round of chemo.

Puppy visits help pass the time.

Monopoly Deal tournaments . . . videos that make us laugh . . .

and walking (dancing) the floor and blaring music . . . all help make the time go by a little faster.

Some of these days can be very frustrating . . . and it's not always easy to be 'brave' and 'kindness' can be fleeting, but we are holding them as our goals and it helps to know, the end of chemo is close at hand . . .

 . . .only one more round.

Thank you for your continued prayers, for showing us your 'kindness' during all these months.  And in case you didn't already know it, you all really are a 'wonder' to us.

Saturday, May 7, 2016

Mothers and Mustard Seeds

I know . . . what on earth could Mother's Day and Mustard Seeds have anything to do with each other or even MacKale.  Probably nothing . . . but to me . . . everything . . . and while this blog is meant to update everyone on MacKale's progress through cancer treatment, it is also a cathartic outlet for me . . . It keeps me a bit sane knowing I have been able to write down everything that has been racing through my mind over the days and months . . . so sometimes it's a little more than an update . . . like today.


Blessings upon blessings, we are actually home this Mother's Day.  MacKale had out-patient chemo Monday and Tuesday which could most likely make his levels tank at some point this coming week, but for now, he's been to school part of three days this week, completed physical therapy, attended his school's activity night and has been able to check out some of his brothers' soccer games!  He's HOME!!!! I'd say that's about as great a Mother's Day gift as I could ever hope for . . .

But Mother's Day isn't just about me. . . especially this year.  Mother's Day is the day we traditionally tell our moms 'thanks,' eat a family meal (that mom hopefully didn't cook), and spend time with the women who have taught us all those ever important life lessons that have made us what we are today.  You know . . . wash behind your ears . . . wear clean underwear . . .  those kind of priceless nuggets of sound advice we have all heard as kids.   But especially this year, it also is a great time to thank all the women who have helped us out over this last 8 months, when my own mothering duties where stretched thin,  when I felt fragmented trying to be in two places at one time and quite often when I was just too fragile to do my job as mom the way it needed to be done.

I have always considered myself incredibly fortunate to have the best of both worlds.  I could work at the job I absolutely love and be with my children everyday.  It has been an incredible luxury.  Yes I was working, but I knew the boys were there with me . . . in the same district and in the same school.  I never realized how much that meant to me until it was no longer the case.  Even though I never had the boys in my classroom (I don't think any of us could have survived that), they were always just a room or hall away.  It was so convenient to be able to bring them to school and take them home as I came and went myself.  They were a fixture in my entire day and in my evenings.  I could sneak in and steal a hug or kiss at lunch time, I got to be a part of everything they did at school, awards ceremonies, Halloween parades . . . I got to see it all.  And if a problem arose or they needed me for anything, I was right there.  Even though MacKale had moved on to the middle school, he too was always there when it was time to go home, we all went together.  To school-Together.   Back home -Together.  Dinners--together.  Soccer games --together.  Church--together.  We were together A LOT!

But then MacKale got sick, and with it I suddenly found my role as mom become fragmented.  I'm so often away at the hospital with MacKale, but even when I am at home, it is often difficult to be 'present' for the little boys. I have had to depend on many other people . . . a lot of them women (a lot were men too . . . but it's Mother's Day so bear with me. . . ) to do for my boys what I used to do exclusively.  That's a hard pill to swallow when you are an independent momma. Because, while Mac was the one that is sick and needs me right now, his little brothers . . . the  "little boys"  have had to do without their mom for most of the last year.  It is heartbreaking, but I am so grateful for those women that stepped in when I haven't been able to be there, or when my skills as a mom have waned. 

My school family . . . the boys teachers  . . . my aide . . . my amazing principal . . . every single one of them in that building . . . all took the extra time to help McCoy and MaGill transition into being without me at school and at home.   They made sure the boys knew how they were getting home (Rita, Jess, Sandy), they supplied shoes, chap stick and hugs when they were forgotten or needed (Laurie and Mary), they took pictures to keep me connected to what was going on (Kerri), and loved on those boys and made sure they were ok every single day (JoyBeth, Katy and Deb).  I knew that while the boys were at school, they had a couple dozen surrogate 'moms' that would do anything for them and that made not being there so much easier.

When Mike and I needed to be with MacKale or on days when Mike needed to be in two places at one time while I was at the hospital, our friends Jackie and Ami stepped in and took over.  The boys had numerous 'sleep overs,' early morning carpools, dinners, and dance parties at their home.  They loved them, made them feel safe, checked them when they were naughty (and that was probably a lot!) and spoiled them when I couldn't and they needed it.  They took care of everything . . . even the not so fun stuff . . . like our dog . . . and my boys felt comfortable and protected when they couldn't be with Mike and I.  I knew when they were with them, everything would be 'taken care of.'

And then there's PapaLucy . . . Mike's own mother, Sandy, passed away nearly 10 years ago.  She was an incredible woman . . . seriously 'the best.'  Her passing was devastating to our family in so many ways.  I never thought in my wildest dreams that anyone else could love my boys the same way that she did . . . and you know what? No one can. But that's ok, because PapaLucy loves them just as much and in a way that no one could ever come close to duplicating.  The incredible thing about Mike's mom's passing is that she left us all an amazing gift . . . her best friend, Lucy.   Papa got to marry Lucy, my boys got to call her grandma and Lucy got three little boys out of it.  (I think she may have gotten the short end of the deal . . . just saying . . . they are kind of wild!) But she has never really been 'grandma' to them.  She is and always will be PapaLucy.  With the help of Mike's dad, Papa, they have been the little boys' family when we couldn't be there.  Lucy has fed them, let them trash her house, run them from here and there, spoiled them, given them candy like a grandma should and a mom won't, thrown parties for them and has been an incredible source of 'grandma love' in our absence.  I couldn't ask for a better 'PapaLucy' for my boys. 

Finally, my own mother, Grandma Shirley Pearl. (She hates when we call her that!)  My mother is the grandmother who indulges all the whims and quirks of my boys. She is the grandma that will take the boys exploring to go look for Petoskey stones after a fresh rain, she has taught them the fine art of hosting a garage sale, how to pick the best and juiciest berries in the most secret locations, the value of money and working hard, and she even taught Mac, when he was three, how to face his fear of needles.  She's my mom so, of course, she makes me crazy sometimes, but I know I do the same to her. . .  a lot!  But despite being 84 years young (and blind in one ear and deaf in the other), she is a rock.  She never fails to rescue me from piles of dirty laundry, locate whatever crazy thing I need for my class, she can make a mean batch of dill pickles, and she is always the proudest mom and grandma when it comes to her kids.  She has taught me so many life lessons . . . lessons about love, family and, of course, faith  and it's those lessons that have carried me through this year . . . 


The day that I sat in my closet and listened to Dr. Mitchell say, 'I think we can save his leg,' a memory from when I was 12  years old came flooding over me.  I don't think I ever spoke of it to Mike and really there is only one other person who would understand . . . that's my mom.  You see when I was MacKale's age, my mom would carpool to her work at a local factory everyday with her friend Dora.  But in that year, Dora's family was facing a struggle similar to the one that we are facing now.  Dora's granddaughter, Linda, was my age, and they had discovered a tumor in her leg.  I never met Linda, but like so many of you who have never met MacKale, I kept up with her progress and how she was doing through my mom and her grandmother.  Information was word of mouth back then.  I mean, there wasn't Facebook friends, no Internet or blogs  . . . heck at one point I remember us even having a party line. And if you know what that is, then you're as old or older than me!    It was hard for me to imagine at 12, having to go through all that she was facing.  I remember I sent Linda a card and some small gifts and at one point my mom helped me have matching t-shirts made for me and her.  There were those t-shirt stores that you could go to back then and look through hundreds of examples of what you might want on a t-shirt and they would heat iron it on.   You know . . . you could chose something like a cute dangling kitty with the words, 'hang in there' or something like that.  Some how my keen fashion sense remembers it as being all the rage then . . .   It must have been because for some reason I kept mine.  When my mother moved from the farm several years ago, she packed up all of her children's miscellaneous 'treasures' and deposited them at our homes.  I don't know what possessed me to finally go looking through one of those many boxes this week, but there was the shirt and the simple message on it that I made for Linda and me.

"God made me the way I am and God does everything right." When I look at it now, the font is horrendous, lettering crooked and what was up with the velvet letters . . . But the message was clear . . .  I wanted her to know that although chemo had taken her hair and the tumor had taken her leg, she was still perfect in every way that God intended her to be.

I had forgotten much of Linda's story over the years, but when I had to tell my mom MacKale's diagnosis, Linda's story came rushing back to the forefront of my mind.  At one point in the aftermath of MacKale's diagnosis, I remember my mom saying . . ."I know who you're thing of . . . and I thought of her, too."  I didn't want to remember, but I had to confirm in my own mind if what I remembered was correct . . ."she didn't make it did she mom?"  It's not that I had forgotten, but I think I just didn't want to remember that this young girl had lost her battle.  It had a profound impact on me then as a child and even more so today as an adult.

It about the same time as Linda, that I discovered an 'unusual lump' myself.  The knowledge of Linda's own story, was fresh and quite honestly, I was a kid and I was scared.  My young little mind tried to grapple with what that 'lump' could mean, and I was afraid that I had the same future ahead of me that Linda had travelled.  I was terrified.  I remember my mom having to 'reschedule' my appointment several times, because the lump would mysteriously disappear and then reappear or, more accurately, I conveniently couldn't find it because I was frightened of what it meant.  But it's very difficult to be brave when you are a child and you are well aware of what a 'lump' had meant to another little girl just like you. 

Where I went to elementary school, it was highly unusual for my parents to pick me up or meet me at school. I mean, it NEVER happened. Both my parents worked everyday and my little elementary school was nestled deep in the Manistee Forest miles from everything.  It wasn't a neighbor school just around the corner.  It wasn't like they would 'drop in' unexpectedly, so I was surprised when my mom came to collect me one day. She got me in the car and handed me a little box.  The kind of box that jewelry came in . . . the kind of box I was unaccustomed to receiving.   We weren't desolate by any means.  We always had food on the table and my parents worked very hard, but extra gifts for 'no reason' was not normal fare.  So I opened the little box  . . . and inside found a glass charm for a bracelet.  The little glass sphere contained a tiny little seed inside, so small that the glass of the charm setting was meant to magnify it in order to really see it well . . . it was a mustard seed and . . . a lesson from my mother came with it.

" . . . if you have faith the size of a mustard seed, you will say to this mountain, 'Move from here to there,' and it will move; and nothing will be impossible to you." -Matthew 17:20

I was scared to find out what this 'lump' meant with the thought of Linda still so fresh, but it was my mom who told me and showed me that I had to have the faith of a mustard seed.  The mustard seed that is so tiny, even minuscule will grow into a comparably enormous plant.  This itty bitty seed into a great big plant? Yes!   

Likewise, the amount of faith needed to do great things . . .  seemingly impossible tasks . . . to face great obstacles is, likewise, very small.  It doesn't have to be grandiose. I does not need to be overt or showy. It's not about the quantity or the size . . . it's about the quality.   Even the smallest bit of pure faith is enough.  It's enough to do great things and it's enough to see you through your greatest fears and your darkest hours.  My mother showed me it was ok to be afraid, but have 'a little faith.'  A little faith was going to be enough to get me through.  

The lump ended up being nothing more than a cyst and everything, thankfully turned out just fine.  But now, here I am.  No longer a little girl facing the unknown, uncertainty of an unidentified 'lump,' but traveling a similar that  Linda's mother travelled so long ago, but with my own son.  People often remark that our family has such great faith.  But you need to believe me and I promise you . . . most days it does not feel that way AT ALL!  The truth is, our faith is often very small . . . even minuscule . . . only the size of a mustard seed, but we know it's enough to see us though.  And while this faith is small, it is mighty enough to face HUGE obstacles and face great fears. My mom taught me that  . . . and so much more!  And to me, those lessons and remembering all the lessons our mothers teach us is exactly what Mother's Day is all about.

So Happy Mother's Day to all the mothers who have followed and supported MacKale, McCoy, MaGill and Mike and I though this time! Thank you for all the meals, the warm beds when we needed a place to crash, the kind letters, the gift cards, the prayers, the love and lessons you've taught us to get us through this and whatever lies ahead.  You have demonstrated to me what is means to be compassionate, how to love beyond your family, how to give so much of yourselves and you all have restored and fed my own faith every day that we've travelled this road. We love you tons!