Wednesday, October 21, 2015

Don't Count Your Levels Before They Fall

Yea, so I guess you can't really count your levels and take a deep breath thinking that all is good.  That was a lesson learned the hard way.  Won't do that again.  My new mantra:  "Must stay vigilant.  Don't take things for granted. Never let your guard down. Keep praying!"  Have I mentioned I hate cancer.

Just when I thought we had turned a chemo corner . . . MacKale had his levels done last Wednesday and had a great day . . . even ate . . . and then Thursday came.  He hauled himself to school, because that is truly his 'happy place' once he gets there.  I'm not saying it's easy to get him there, because it definitely is not.  Mornings are the worst.  He usually gets sick in the morning, is tired and doesn't want to move, is nervous about going, but he got there.  But it wasn't long before I got a call of concern from the school.  He didn't look good.  He was acting sick.  They didn't want to bug us but . . .His school is so good to MacKale, and they are so concerned.  I know that having him there is not the easiest thing.  I know that they must be on pins and needles because I am most the time, but they have done everything they can to accommodate us and keep MacKale safe.  We love them for that.  Mike went and checked on MacKale, but he didn't want to come home so they struck a deal that MacKale could stay until lunch time and then we could come home and rest.

He slept all afternoon, was grumpy, cold, mouth sores were very painful, couldn't concentrate on homework and just NOT himself at all.  He wasn't drinking like he had been earlier in the week, tried to eat and ended up vomiting  . . . again.  Ughh.  He couldn't get comfortable, we tried a shower, bed, he felt warm . . . CRAP . . .  a fever!

Chemo patients know what a fever means. . . you're fighting off something . . . maybe a port infection . . . maybe something else, but at the very least, you're going to the ER to figure it out.  And that's where we ended up, too.   Mike rushed him in while I stayed with the little boys until Mike's dad could come and relieve me.  It was horrible.  I felt like the world's worst momma, and I know that's not true, but when you say your goodnight prayers and promise your little ones that you will come in and snuggle them up in the morning and that doesn't happen because you are heading to Grand Rapids and the hospital . . . it's tough.  I honestly feel like the little boys get nothing but disappointment and broken promises from me lately.  All attention is on MacKale. Guilt is an evil, evil thing, and being a momma with a cancer kid is a tricky balancing act.

Our local hospital was great.  This is where we came to infuse MacKale as a little guy before his got his port.  They have always been very accommodating at working with our hemophilia docs, and the same was true for working with our oncology docs.  They got MacKale stabilized and ready for us transport him down to Grand Rapids.

While it was disheartening that he had to end up back at DeVos, it was also a relief to see him come back to life.   Even when he's poked and prodded, he's polite and compliant and finds things to occupy his mind (sports!) if he's up to it.

By Thursday afternoon, he was drinking and would pacify his momma with a nibble here and there.

He even decided he might be up for a little adventure to the game room where he proceeded to beat me, even in a wheel chair, at basketball.  

Truth is, he wasn't gonna leave that room until he buried my high score.  He may be just a little bit competitive. . . . just a little.

By Friday, he was eating . . . I mean eating and by Saturday afternoon, MSU football time . . . he was asking for BBQ Chips!

 I went out and bought three different bags.  He ate two (I ate one--shhhhh it's so NOT on my diet!  And I totally DON'T care!).    That game . . . that game people. . . that game was the best medicine ever.  MacKale loves MSU and everyone on that floor knew it.  We had nurses running in at the end and people texting MacKale  (It's bad when your 11 year gets more text on your phone than you do!  But it was ok with me.) . . . it was crazy fun, and I finally saw a glimpse of my boy coming back to me.  My heart was full.  It was a good day, even if we were in the hospital.

And so it has been since the boys came to get us and return us home on Sunday.  He's eating--A LOT. He's the same old funny, goofy kid we know is in there even when he doesn't show it when he's sick.  He's been to school three days in a row.  He is so happy when I pick him up.  He loves his school, his teachers and his friends. And while everyday with MacKale is a blessing, these happy days are a special blessing indeed.  I won't say the chemo fog has lifted.  I will just say we have enjoyed several good days as a family.  These days are truly a gift from God, and we owe it all to Him.  These days sustain us.

We head back to DeVos next week for more chemo.  Our friends and family across the world have been an amazing source of prayers, and I am so grateful for this.   I know I have asked it so many times,  but I will continue to remind you, to nag you even to please continue to keep us in your prayers.  Pray for God's healing grace for MacKale and for strength for our family.   Asking for help has never been easy for me,  but cancer has shown me I need you all desperately and love you all so much for lifting up MacKale.


  1. Marsha, you really are a gifted writer. I look forward to your updates and read them from top to bottom..twice! Sounds like a bit of the two steps forward, one step back, two steps forward. Although it's human nature to doubt ourselves and think we are not doing right by the ones we love, you are doing everything right and any kid would be lucky to call you mom. I feel very lucky to call you a friend! My thoughts and prayers are always on MacKale and the whole family. Once you give an update, I then relay all the information to my loved ones, as they are also very concerned and praying for all of you.

  2. Thinking & praying for you, MacKale, and your entire family. Hang in there & enjoy those good moments.

  3. What a blessing that he has such wonderful people at school to look out for him. I'm glad he's feeling better and you can rest easy, for a moment at least. Good luck next week and know that your sweet family are constantly in my prayers. Make sure you take care of yourself too! ;0)

  4. Do you have an address to the Devos/Chemo Center where we can send MacKale cards..mail...etc. My grandson was in Mary Free Bed for two months and we all looked forward to the mail...and little things sent in love. thanks

  5. You are all in our thoughts and prayers.

  6. We will keeping all of you in our prayers!
    -The Richards

  7. My Michigan fans were devastated by that UofM/MSU loss, but my heart was so happy for MacKale. I just knew that he would be THRILLED!!! Continued prayers!

  8. I love reading the updates and I'm with Lori, I read them twice to make sure I didn't miss something. Keeping you all in my prayers. It breaks my heart that you all are going through this. Lots of love, Sherry

  9. Marsha,
    It's been a long time since we've connected. I have boys very close to your boys age. Your Mac and his burgers are in my prayers often. We live just north of GR and if you need something, zip me an email! much love, Teresa (Janik) Boyer