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.