Wednesday, November 25, 2015

In All Things Give Thanks

"Rejoice evermore.  Pray without ceasing.  In every thing give thanks: for this is the will of God in Christ Jesus concerning you."
- 1 Thessalonians 5:16-18 KJV

. . . in everything give thanks . . .

It was a blessing to have all of us together over the weekend despite the locational challenges of being in the hospital.  My heart was so full to have all three brothers picking at each other and playing.  I needed little boy hugs and snuggles, and, for a few hours, we felt whole.  When it came time for the boys and Mike to leave to head home on Sunday, my heart was torn in two.  McCoy and MaGill cling to me and I cling to them.  It's hard to understand this cancer thing when you are just a little guy.  It's hard to understand when you're a mom or a dad.  It wears you down and tears you up.  I was torn up.  But I picked myself up and headed up to the 9th floor after saying good-by and wiping my tears, ready to hang with my number one Spartan fan.

Thankfully, MacKale was feeling great and wanted to snuggle together and watch movies. That doesn't happen a lot in the hospital so I jumped all over the opportunity, even if he requested a 'football movie.'   First up . . . Remember The Titans!  Love, love, love that movie.  But then MacKale suggested a movie he had watched in his homeroom class last year.  "Mr. Main showed us this movie I think you'll really like mom.  It's called 'Facing the Giants.'"

It wasn't what I expected.  The acting was just ok, and it is definitely not award winning in the 'traditional' sense, but it spoke to me.   There were two messages in this movie that resonated with me and shook me to my core.  I have been struggling lately with worry and fear.  The 'what ifs' have been shaking my faith and wearing me down.  Oh believe me, I pray about it . . . A LOT.  But it has been difficult to shake.  And then in the midst of this movie, when this coach was in the deep-end of doubt, a friend of his tells him the story of two farmers.  These farmers were both experiencing a horrible drought and they both prayed to God for rain.  But only one of them went out and prepared his fields to receive it.  The friend asks the coach, 'which one do you think trusted God to send the rain?'  The coach replies . . . 'the one who prepared his fields for it?' And his friend asks . . .'Which one are you?  God will send the rains when He is ready. You need to prepare your fields to receive it.'

I looked at MacKale and said, 'Mac, we don't have time for worry and fretting, buddy.  We need to prepare our fields.'   Lesson one from 'Facing the Giants' hit me square!  I got it!

Then . . . as this little football team of 32 kids were facing the biggest, baddest team ever--the Giants . . . three times bigger . . . three time state champions . . . this is what the coach tells his kids . . .
"And if we win, we praise Him; and if we lose, we praise Him. Either way.  We honor him with our actions and our attitudes."

"MacKale, we need to always be thankful . . ." Lesson number two . . .This war we are waging against cancer with MacKale has so many battles.  It is so easy to become defeated, to feel like you're getting beat up and that we just can't get a break.  We end up in the hospital after chemo, we are separated, we are stressed, we are tired and can't quite understand why this is all happening, but win or lose, we have to continue to praise Him, because there are so many many many things that we have to be thankful for . . .  an abundance of amazing things that we can not lose sight of.

We are thankful to every single person that has taken the time to pray for MacKale, to pray that the chemo kills the cancer in his tumor 100% and heals his body.  For  Mac's fifth grade teacher, Jason Main, for introducing MacKale to 'Facing The Giants.'

We are thankful for our friends, Ami and Jackie and for Papa and Lucy who continue to care for the little boys, picking them up from school, keeping them over night and making them feel safe.  And for caring for Maya too . . . someone has to love our dog when we are away.  That is no small task when your dog is a Doberman.  We are so thankful for our co-workers, colleagues and clients who have supported us from the beginning.  To everyone that has covered for Mike at the resort or at the office so he could be with us during treatment, it is a precious gift, thank you.

We are thankful for MacKale's soccer team and their families who have cared for us.  We will never be able to express our gratitude for the parents who started the t-shirt drive at Mackinaw Trail Middle School which has boomed into something amazing.  And for every single kid, grandparent, store owner, teacher and adult who wears a #TeamMacKale shirt, we are so thankful for you and for continuing to show your support for MacKale.

For every single bald head shaved for MacKale, we are blessed. For our St. Agnes Church family, Father Joe Fix and every church in the Cadillac and surrounding communities that continue to keep MacKale on their prayer lists, we are so thankful.  For Cadillac Area Public Schools, my Franklin family and my aide-Laurie, Mackinaw Trail, all the teachers, staff, families and students who continue to stand behind us, you are loved.   For the parent who said, 'go Team MacKale' in the grocery store to Mac yesterday and  to the stranger who stopped and hugged me because, even though she didn't know me, she felt like she just needed to, I am thankful.  I needed it too.

For our friends, family and siblings, who text Mike and I on a daily basis to let us know you are thinking of us, I  can't tell you what it means.  I am so grateful for the teacher/blogger/TeachersPayTeachers community.  Teachers are an amazing community.  They have embraced my family and cared for us from miles away.  Maria, Jennifer, Mary, Jodi, Annie, Deedee and all my blogging teacher friends, I can not even begin to express my gratitude for all you have done to help me.

For the guys who blew our leaves this fall and will plow our drive this winter, we are thankful.  For Jeannie who cleans my house and my mom who does my laundry, for everyone that has sent cards and notes, we are thankful.

We are thankful for MacKale's friends, the ones who will still jump in bed to play with him, who email, reach out and send notes.  We are especially thankful for MacKale's friends Rylie and Micaih who continue to call and visit even when MacKale is not particularly talkative.   I know it's not always easy, but please don't stop.  It makes his day.

To Jack for playing video games and for his mom and dad for letting us crash at their house, for my friend Patty who sends jokes for MacKale to tell his docs, thank goodness for you.

For our wonderful babysitters, Erica and Jenna who, without fail, will drop their studies at Aquainas every time Mac is in the hospital to come and see him, play games and make sure he drinks, you are heaven sent.  I am thankful to their mom and dad for raising some amazing daughters.  For anyone that sent gas cards, Starbuck dollars, frozen casseroles, board games, books and cards . . . we have no words.  You continue to bless us. We are thankful for music, jokes, Facetime and anything that can take our mind off from treatment.

We are blessed and amazed by the community of Cadillac.   We can never begin to express our gratitude to the people we grew up with, our parents' friends, our boys' teachers and strangers who have embraced and supported us during this journey.  Our friends and family are kind of obligated to love us, but strangers . . . how did we become so blessed to receive the kindness of people who have never met us.  God is truly good and alive and well in Cadillac because we see it in the people who live here.  I am especially thankful to Shawna, who has shared her own journey as a Osteosarcoma mom with me, she texts me, answers my questions and listens.

For anyone that will talk golf, football or hunting with MacKale to keep his mind off all the ugliness he's facing, we can never tell you how much it means. We are thankful for MacKale's medical staff, from the staff at Mackinaw Trail Pediatrics to his hemophilia team in Traverse City to the amazing nurses at DeVos, childcare specialists, Dr. Mitchell and her oncology team and Mac's surgeon, Dr. Post.

Thanks to God for McCoy and MaGill and their wonderful resilience . . .

And I am SO thankful that God has given me a partner in Mike that is so strong.   He has held me up and kept our lives together despite distance, the distress and the despair of this journey.  The boys and I are truly blessed.

We are thankful for these things and so much more . . . so many more things and so many more people.  All of you  . . . have made it very clear to us that we do not travel this journey alone.

  . . . but . . . in every thing give thanks . . . every thing . . . every single thing?   It's easy to thank God for the the good things, to thank him when everyone's healthy, when all is well, when we have no worries . . . but isn't our greatest gift to Him, to be able to praise him even in our darkest hours.  It's hard, almost impossible for me to say that I am thankful for cancer.  How can that even make sense?  It has taken so much from our family, from MaGill and McCoy and mostly from MacKale.  I don't understand how to be thankful for THAT, but I pray that God shows me how and I'm trying.   I think about hemophilia and the devastation Mike and I felt when MacKale, this seemingly perfect, fat and happy little fella was diagnosed with hemophilia.  I wept for all the things he would never be able to do.  If only I would have known all the doors it would opened for him and how it would shape his life.  If you would have told me 11 years ago that  I would ever be thankful for hemophilia, I would have thought you fell on your head.  But look, 11 years later, I am so incredibly thankful for hemophilia.  Hemophilia, in addition to all the amazing opportunities it provided for MacKale and our family, has  allowed us to find his cancer and start treatment quicker than if he never had it.  It gave us an oncologist who has been invested in our son since birth and who we know is fighting for him on every level.  Is it possible to feel this way about cancer someday?  While I'm not quite there . . . (Heck, I'm not even close to being there.  Who are we kidding?)   . . . I will continue to try, because I believe that He will find a way to use this horrible journey for good.   How or when or why is still a mystery to me, but it will be used for good.  And until then, we continue to ask you to pray for us, for God to grant us faith without question, for strength, understanding and for the chemo to kill the cancer in MacKale's body and in the tumor that is in his leg 100%.

We are so thankful for all of you this Thanksgiving Day.

"You'll get through this.  It won't be painless.  It won't be quick. but God will use this mess for good.  In the meantime, don't be foolish or naive.  But don't despair either.  With God's help you will get through this." --Max Lucado from You'll Get Through This.

Sunday, November 22, 2015

The Healing Power of GREEN

Post chemo days can get mighty gray.  The cisplatin that MacKale has gotten now twice is so incredibly difficult for his body to bounce back from.  One of the docs called the time after this chemo, the 'cisplatin blues.'  It feels more like the cisplatin black and grays to me.  There are brief moments of a reprieve when he gets a text or note from a friend, a new picture of someone in a Team MacKale t-shirt or a card in the mail.  But for the most part,  MacKale gets very weak, withdrawn and has little opinion about anything other than food, and that opinion is that he doesn't want to eat.  'Do you want to play a game, MacKale?'  'I don't care.'  'Do you want to watch a movie?' 'I don't care.'  'Do you want to work on some homework?' 'I don't care.'  There's a common thread of 'not caring,' which to me translates as giving up.  I hate it.  It terrifies me.  I shakes me to my core and sends me into my own cisplatin blues and has me clinging to my faith with all the strength I can muster.

This week was another post chemo cisplatin blue week.  Each time we take this chemo, it hits MacKale like a train and makes bouncing back harder.  We got home from treatment on Saturday, but by Thursday afternoon, I was speeding back down to Grand Rapids, because his levels had dropped again.  These unplanned trips only eat away at the little light that is keeping him from turning completely off during these post chemo days.  And it's not easy on the rest of either.  Unplanned trips mean unexpected departures from home before the boys get out of school, which means stress for them, worry and concern over their brother, plus time away from mom.  They cry because they want us to all be together which means dad gets left to pick up the pieces.   So the cisplatin blues were a bit contagious this week.  We're all a little off color.  We all are a little 'not quite right' when we're not together.

But then Saturday comes, and no matter how blue or grey or black our moods have been  . . . MacKale wakes up GREEN!  Spartan GREEN.  This week was no exception.  Mike packed up the little boys first thing in the morning, headed south and were in our room by 8:30am.

Rub a dub dub . . . three boys in a bed playing Monopoly by 9:00am.  Sometimes just having your brothers to pick at and love on is the best medicine ever.  But put the added fact that the Spartans were playing OSU at 3:30pm and you have a day that could help us get through the greyest of weeks.  I seriously do not know what I will do when college football season is over.  I know that Mac will watch a little pro ball, but college ball is his first love.  I can only hope that it won't be too much time in between before golf starts up and the Phil Mickelson is play well.   Or maybe, since he won't be skiing this year, he'll turn his attention to watching basketball.  I just know something has GOT to fill that void when it happens.

Just the anticipation of this week's game turned MacKale around on Saturday morning.  Nurses and docs came in and started getting MacKale's predictions for the games being played on Saturday.  Believe me he has an opinion on all of them.  Would Connor Cook play or not?  Could the Spartans pull it off against OSU without him if he really didn't play?  If they do win, what do you think their new ranking will be?  MacKale, in his ever optimistic view of his Spartans knew that they could  . . . and would win.  All this pre-game banter actually got him so pumped that he ate breakfast and a bit of lunch.  Seriously, can't the Spartans play football EVERYDAY?  It would make this momma's stress level so much more manageable.

And so we played and napped and ate until the game started . . . but then . . . a package arrived.

Now I've told you that I truly believe that God has placed angels on this earth especially for our family.  Angels who anticipate our needs before we know them, who anticipate what will make our lives easier, angels who think about MacKale and what would might make being at the hospital easier . . . put a smile on his face . . .make him forget cancer.  I can not even begin to tell you all the angels that we have encountered in the last 2 months.  Some family members, some friends, some colleagues, community members, kid, adults, strangers and sometimes people who just want to remain anonymous.   One of these days, I promise, I'm going to write a post and see if I can possibly list them all.  I know I'll never get all of them, but I'm going to try.  But please understand, it's not about the STUFF and the THINGS.  I don't want you to think that, because if you know Mike and I, you know that accepting help is something that we don't do easily.  But I can tell you this, the  prayers, hugs and kindness demonstrated by all these angels have amazed us and sustained us.  How did we get so lucky?  Why are we so blessed?

Some kind angels who know MacKale's love of his Spartans, check in with him every week after the game.  They send him texts and pictures of them cheering on the Spartans.  They call to congratulate him when they win (or call to agree with the 'rotten call' if they lose).   He's even scored some new Spartan gear, blankets, a couple of hats and his 5th grade teacher even got the Spartan baseball team to autograph a bat for him.

It is SO cool and put an incredible smile on MacKale's face.

And then this week, as we anticipated the start of the game all cramped into our 9th floor room at DeVos, that package arrived for MacKale.  His hemophilia treatment center in Traverse City, the people who have helped managed his hemophilia and care for him since the beginning, knew that he would be watching the game and wanted him to have something a little special.  It kind of went like this . . .

In case you missed that . . . his hat said 'To MacKale . . .' and it was signed by
Coach Mark Dantonio
#18 Connor Cook
#16 Aaron Burbridge
#89 Shilique Calhoun
and Traverse City's  #30 Riley Bullough

These players aren't my sons, but if they were, I would be mighty proud of them.  They made a very sick little boy, incredibly happy.  Again, how did we get so blessed to have people in our lives who would go out of their way to find ways to make MacKale forget about cancer, if only for a few brief moments?  I can NOT tell you how proud he is to be sporting a hat . . . that says 'To MacKale' and signed by his Spartans.

MacKale wore that hat with PRIDE Saturday and his Spartans won!!! I'm not sure what medicinal good a Spartan hat and win does for a cancer patient typically, but a Spartan win this week helped MacKale consume a hotdog, jello and take all of his meds.  It had him screaming at me from his room while I showered this morning . . . 'MOM... woohoo I gained .1kg.'  It helps, slowly but surely, see levels start to move upward, it got him out of bed and doing his exercises and it paints a permanent GREEN over the top of the cisplatin blues.

 If you ever doubt that an act of kindness can make a difference to another person, MacKale is the proof that it does.

Thanks you all for your continued prayers for MacKale's healing and recovery.  We are ALL truly blessed by having you all behind us.

Sunday, November 15, 2015

Don't Be A Golf Dinosaur!

Humor is a precious commodity that you cling to when someone you love is going through the horrible reality that accompanies cancer treatment.  Sometimes it's something that is truly funny,  and other times, it's something so ridiculous, but the timing is just perfect.  It becomes your go to . . . the thing you count on to bring a laugh,  a smile or even, just a little comfort.

You all know that it was only a matter of days from when MacKale was diagnosed with osteosarcoma that he had to start chemo.  We all were literally in a state of shell shock.  There was a lot of hurry up and wait during those first days . . . hurry up and wait for an MRI . . . hurry up and wait for a biopsy . . . hurry up and wait for a pathology report.  In reality it was only 2 days, but it seemed like forever and then it was only five days after that, less than a week from our first doctor's appointment regarding this mysterious leg injury, that we started chemo.  There was a lot down time in there . . . a lot of ESPN . . . and an even greater amount of The Golf Channel.  Mac hadn't had a whole lot of chances to watch that much television  in the past.  He was an active kid, he was playing soccer, golfing, outside playing, shooting basketballs . . . He never met a sport he didn't like.  He was actually scheduled to head to Arizona at the end of October for a golf clinic he had been nominated to attend for kids with hemophilia, but cancer kind of changed all that. It broke our heart to tell him that instead, he'd be getting cancer treatment.  Rather than playing sports, he was now watching sports to past the time.  There has been a lot of football and a lot of golf during these times.  In his hours of watching The Golf Channel,  Mac became obsessed with these crazy commercials.  There's these guys who try to schedule their tee times by phone, You know, the old fashion  way instead of using an online service. The commercials always end the same way, with the jilted golfer acting like a dinosaur  (like he imitates it in a ridiculously weird way) and the by-line is 'Don't Be a Golf Dinosaur.'  Here's one of the three commercials . . . you'll see what I mean.

When you're 11 years old, it's hilariously funny, and MacKale would giggle and tee hee every time one came on.  It became a running gag.  Mac would try to catch me off guard . . . 
Mac:  Mom? 
Me:  Yes! What do you need Mac?
Mac:  Don't be a golf dinosaur!?  (tee hee tee hee tee hee . . .  )
Me:   dang you . . . . (grrrrrrr)

It broke the tension.  It made us all laugh.  It was our 'funny thing.'   It was his thing. Then that first round of chemo started.  Doxorubicin!  With a Cisplatin chaser.  It is the most hideous, horrible  . . . and evil chemo.  The only reason I could stand watching MacKale go through it is the thought that it was just as evil and hideous to the cancer . . . I prayed and still pray that as bad as it was, it was worse for the cancer.  MacKale basically withdrew during this chemo.  When he wasn't sick and vomiting, he tried to sleep.  He didn't eat.  He didn't drink.  He didn't speak.  My outgoing, social boy . . . wasn't.  It was heart breaking . . . I was devastated and scared and beside myself.  Until one night, in the depths of the dark cocoon of blankets and puke buckets that surround him I heard a weak little voice . .  . "Mom?"  Oh my gosh . . . I had been frantically waiting for him to talk to me . . . come back to us . . . "What Mac?  What is it?  What can I do?"  And, of course, you know what I heard " . . . don't be a golf dinosaur . . . (hee...hee . . . hee) . . ."  DANG it!  He got me!  But I also knew, he'd be ok.  It was his way of saying . . . I'm still in here.  No sweeter words could a mother hear.  Mac was back!  Just a little glimmer at first . . . but he was there.

So in my quest to find him something to cheer him up during those first few days,  I went online frantically looking, searching and asking everyone I could think to ask, 'where can a purchase a "don't be a golf dinosaur" t-shirt, hat, something, anything . . . that I could get for MacKale.    They don't make them.  Dang it again.  I wasn't giving up so easily though.  You know how it is, your child is hurting, you'll do just about anything to bring a smile to his face. .  .even contact some huge company on the small chance they might be able to help. I wrote a note to the Golf Channel and the advertising agency that produced the commercial explaining how MacKale loved this commercial and telling them our story to see if by some crazy chance they had anything with 'don't be a golf dinosaur' on it that I could purchase for MacKale.  But guess what?  There was nothing I could buy. They said they would see what they could maybe find.  Well . . . I tried anyway.

Then this week marked our return to the hospital after two previous weeks of Methotrexate chemo therapy treatment.  This week we were back to face Doxorubicin and Cisplatin again!  Going back to the hospital is not amongst our favorite things these days as it is, but we were all a little apprehensive and scared about facing these two meds again.  Our doctors assured us that they had a better plan to get us through the side effects this time, and for the most part, they were right.  Instead of vomiting, Mac just slept . . . a lot . . . as in, he went to bed one afternoon and woke up two mornings later.  I basically helped him with his bathroom needs and he would crawl back into bed without so much as a peep.  I hated that . . . absolutely HATED that he wouldn't talk to me . . . it scares me and takes me to a dark place I don't like to go to . . .  but then on that last morning . . . as if on cue . . . I heard his weak little voice from deep under a mountain of pillow and blankets . . .  "Mom?" . . . "Yes MacKale, you're awake, what is it?  What do you need? . . ."  You guessed it . . ."don't be a golf dinosaur."  I cheered.  I hooted.  And I hollered, jumped in bed with him, gave him a squeezed and yelled . . . "HE'S BAAAAACK!!"  It was just a glimmer, but enough to reassure me that he was on his way.  We could pack up and head home from  DeVos to start the hard work towards recovering and  bouncing back from the chemo stupor that knocks him down so far I often fear he won't get up.

Home after Cisplatin is both a blessing and nerve-wracking.  It's a blessing to be home with the boys.  It's a blessing to try and find some normalcy for a few days.  It's a blessing because we are together.  But it's also so incredibly nerve-wracking and scary for me.  I don't have that back up of physicians and nurses who know how to care for him best.  Medicine is not my area of expertise.  This is not my 'gift.'  So I tiptoe around  . . . and hold my breath . . . This chemo sent him back to the hospital the last time.  So for the next 10 days I may look through everyone else around me, forget to exhale, fail to sleep until I know we are in the clear.   It's stressful, but still  . . . home is a blessing.

Yesterday we had an added blessing of sorts when we got home.  There was a big box waiting for MacKale. . . a box from The Golf Channel.

Not only had they come through and created something with 'don't be a golf dinosaur' for Mac and the whole family, but they had showered him with a plethora a Golf Channel goodies . . . (no more stealing tees from his brothers).

It was a gesture of kindness big enough to get him excited and looking forward to playing the game he loves so much.  It was amazing medicine for a boy who has been through so much already and has such a long road left to travel. MacKale loves sports . . . all sports . . . but quite honestly, golf is probably one of the few that he will be able to continue to play after his surgery.  This sports minded boy has so many challenges and changes ahead of him in regards to sports.  He will have to find new ways to enjoy the things he loves the most.  But golf . . . golf he can hold on to.   It will NOT be easy.  There will days of frustration and disappointment . . . we already see that when he says, 'I just want to go out and play.' But hopefully, the anticipation of a day hitting balls will almost be enough to make him forget all this chemo garbage and start thinking about how he is going to have to work on a new swing to compensate for his new 'salvaged' leg.  It gives him 'something' to reach for.  And for that . . . I love The Golf Channel.   They didn't have to go out of their way, but they did.  And I think that's pretty amazing.  More than the great 'stuff',  more than going out of their way to create this crazy t-shirt for Mac and all of us (yes, we will all be sporting one next year on the links), they have acknowledged our need for laughter through this horrible journey with their gifts and have given my sweet boy a smile and a renewed hope for some great golfing next summer.

Please continue to pray that God heals MacKale, that he gives him the strength to survive the after effects of chemo that ravage his body and that he rids MacKale's body of this horrible disease so that summer golfing hopes can become a reality!

And oh yeah . . . 'don't be a golf dinosaur!'

Saturday, November 7, 2015

Our Reluctant Home Away From Home

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

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

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

We love you too Cadillac Thunder!

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

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

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

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

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

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

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

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

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

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

And then there was this little darling . . .

no it's not a hedgehog . . .

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

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

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

My favorite though was Chewy.

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

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

and not so much fun.

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

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

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