Monday, May 8, 2017

9th Floor - Revisited

It's been an excruciatingly long 10 days since our 3 months scans. While Mac had clear lung scans for which I am so grateful, I asked you to pray for the lesion that was showing up on his cadaver bone. We didn't know what it was, and over the course of the last 10 days it has been referred to as erosion, a lesion and a mass . . . we didn't like any of those terms, but the fact remained that we needed to get in there and see what was causing what looked like the bone to erode.
We were initially scheduled to have that biopsy tomorrow, but around noon on Thursday, I got a call from DeVos that they had room for him the next day, Friday. Mike and I hurriedly made arrangements for the 'little boys,' I wrote sub plans and we boot-scooted it to Grand Rapids first thing Friday morning.
Whenever we walk across the bridge to DeVos, the reality of cancer becomes very real to me. All those feelings that made camp in my heart all those days we spent in treatment, they are right there at the bridge waiting to welcome me back. It takes everything in me to keep them at bay and fight back the terror, but one step at a time, we keep walking this journey always knowing we are never alone.
The biopsy itself was pretty straight forward. A radiologist went in with a big ol' needle type instrument and took several samples of the suspect area. Then Mac was sent up to the 9th floor for 2 days of observation to make sure that his bleeding was in check, because, you know, it's not enough to have had osteosarcoma, we have to throw a little hemophilia in there just to make things interesting. Our amazing orthopedic oncology surgeon, Dr. Post, came in on Friday afternoon to check out Mac and give us a bit more information about what exactly they were looking at with the biopsy. He's always been a straight shooter with MacKale. He told him, 'you know MacKale, it could be osteosarcoma, or it could be an infection or something else that was causing the bone to react and erode. Perhaps it's the hardware that was used when the leg was constructed. We don't really know, but we need to rule some things out.'
All we could do now was sit and wait (and pray a lot) for the results which wouldn't be available until the following week. We got our exit ticket from the 9th after two days of visits from friends, non-stop video games,
intermixed with episodes of boredom,
and mass amounts of junk food. We were first on the discharge list on Sunday morning and made it back in time for Mac to even stop and hit a few balls at Katke with his dad on the way home despite the 40 degree weather. Yikes!
Surprisingly, Dr. Mitchell called us tonight to let us know that the pathology reports were, in fact, back and the results show no sign of tumor and as of now, no infection! (Can I get an 'amen.') We still do not know what is causing the erosion, but we are celebrating the fact that it isn't cancer nor an infection. God is SO incredibly good, and we feel so blessed.
Returning to the 9th floor this past weekend . . . egads! That hard stuff friends. A wave of emotions can creep up on you in a moment and catch you completely blind sided. Fear and guilt are very real. Fear of being shoved back into a battle we don't want to fight again. Guilt at watching other kids fighting that battle. I think God sends us back to this floor so we never forget and so we never stop fighting for more funding and more support for Pediatric Cancer and Osteosarcoma. If that's His goal, He's doing a great job at it. This cause has me by the heart and it won't let go.
I find it ironic that today, on my Facebook Memories, the post I did last year on this date . . . the Mother's Day post about faith and a mustard seed came up. I was re-reading that post this afternoon right before Dr. Mitchell called me, and it reminded me, yet again, that my faith doesn't have to be perfect, it doesn't have to be grandiose, it just has to be . . . a little faith will sustain us and make us stronger than before.
As we celebrated over root beer floats tonight and then piled, all five of us, into McCoy's twin-sized bed for prayers, we thanked God for all our blessings and especially for all of you. Thank you for sharing your faith with our family and for continuing to keep us in your prayers.

Wednesday, April 26, 2017

It's that time again . . .

Spring Break Boys at Myrtle Beach
Many days . . . most days it is easy to live a blissfully ignorant life, free of cancer and chemo and all things that have anything to do with osteosarcoma.  I'm happy to say that all of us have gotten very good at it over the last three months. The mundane, daily rituals of family have been glorious.  Boys play, joke, fight, and laugh just like they always have and the noise that comes as part of the package when you host brothers in your home is a sweet reminder to Mike and I that our family is still here . . . working out our new roles and goals, but doing it together!

Mac is back refereeing soccer! 

The busy routines of homework, friends, school, concerts, church, soccer games and all of those things that make our life so delightfully out of control most days, also creates a world where it is easy to forget  . . . And then the three month mark is up and it's back to DeVos . . . back for scans that will tell us the fate of whether we get to continue to bask in the normalcy of our boring, small-town life or whether we will be back in fight mode against the beast.  Back for scans!

On a list of things I despise most in the world, scan day is probably right up there.  It's only redeeming quality it has is that while it can weld a harrowing blow of disappointment, it is also able to deliver the news that gives us a vacation from cancer for three months.  My relationship with scans is definitely a love-hate one.   MacKale doesn't care!  He is delighted to have a day off school.  He wants a thick strawberry shake for lunch and would like to stop by and see his nurses from the 9th floor.  Scans seemly never phase him.

He is an anomaly to me.

I would gladly go to school everyday if it meant we would never have to face the reality of cancer in any way, shape or form.  I would gladly hide away from scans and the hospital and everything uncomfortable that comes with facing a day of scans.

It's the difference in our make up.  It's the difference between his ever optimistic outlook and my 'mother gene.'  Regardless of how I might feel, however, we can't hide from this.  This is the reality we face tomorrow, and it's why I will come to you all again and again, without shame or guilt, to beg for prayers  . . . prayers for peace and wisdom but mostly for scans that show N.E.D (No Evidence of Disease).

Osteosarcoma absolutely stole so much time from us last year, but in many ways, we have been blessed with a clearer vision of what is important and a great appreciation for precious time together.
Laughter and fun are priceless commodities these days. We take greater advantage of long drawn out dinners, we don't always rush that snuggle time before bed, we say 'I love you,' we hug our family and friends, we take the long way home, we don't work quite as hard as we used to . . .  and our nightly prayers take a bit longer than before, because, quite honestly, our blessings are many, and it takes a LONG time to be thankful for everything given to us.  We are genuinely so incredibly blessed. We are together, we are happy, our boys are in school, we have a home and work and everything we desire  . . . everything we could ever hope for, dream of, or wish!  We have it all!  But, despite all of it, of course, we are not perfect . . . and we get scared.  We are afraid! And, quite honestly, that fear robs us.

Because here's the thing . . . unfortunately for too many children with cancer . . . too many of our friends from the 9th floor . . . too many children we care deeply for . . . relapse is a brutal reality.  It is so unfair and horrible and agonizing.  And we desperately pray for our friends who are facing that reality.  We pray that the cancer will leave their young bodies and leave MacKale's and never . . . not ever return.  That's a prayer we can't let go of . . . not ever.

As for me, tomorrow I'm going to make a special effort to take the advice of my friend, John, who promised me he would light a candle for Mackale at the Sant' Agata Cathedrale in Catania, Italy this week.  John knows our journey and walked this same road with his son many years ago.  He told me, "fear is such a terrible thing, the opposite of love, and you want to go with love, in everything. Let that take your anxiety away." '

So this time for scans, I'm going try to be like Mac.  This time around,  I'm going to order the extra thick strawberry shake and love every calorie.   I'm going to 'go with love, in everything.'   I'm going to try . . . really hard.  But I may need a little help . . . so pray for me.

Love you all . . .

Spring Break Myrtle Beach