I used to love roller coaster rides when I was younger but as I get older I find they are too much – I’m happy to be the “stuff” holder who sits out a turn while everyone else runs back into line.  Now, despite my best efforts to avoid roller coaster rides, here we are….

As a mom, I have always felt a little boost of pride when, at our yearly pediatrician appointments, our providers often remark how “thin” our files are (which now seems so ridiculous)…we’ve been blissfully spared major medications, hospital stays and chronic illness.  To say we’ve gone from zero to sixty is a bit of an understatement but we’ve embraced the learning curve and are trying to hang on for dear life.

One thing we are coming to understand is that the days are not necessarily linear in that he doesn’t have good days and bad days; rather it’s more like good hours and bad hours and when they are bad they are really bad.  We got tricked into believing that we could spare Will’s suffering but each rough episode feels like getting the bandaid ripped off again….now we just know that trying to cover the wound is sort of futile so we stay a little raw and that’s ok for now.  We have to embrace the ride and know that to become lulled into believing we have some sort of control is a bit foolish.

Will is on Day 8 of Chemotherapy – he will be done on Sunday.  Depending on the Chemo cocktail of the day, he tends to have either some pain or a lot of pain as the cancer cells start to break up (which is what we want).  He also has to do a Lumbar Puncture every few days to infuse his spinal fluid directly with Chemo as there was evidence of cancer there as well.  Once Chemo is complete they expect to see his levels “bottom out” after a period of time, typically 10-14 days, at which point they should start to rise and we then could be able to go home for a short while.  We’ve been told it likely will be toward the end of January which seems like an eternity but yet here Will is, doing this day after day and at some point the number of days behind us will be greater than the days before us.

We are still waiting on the results of the genetic testing to determine the final treatment plan so don’t have updates on that front, yet.  Many of you have asked about visiting and while we do love visitors, because our days can be unpredictable, I’d ask you to hold off for now…this is definitely a marathon not a sprint so we look forward to seeing you all as soon as possible!  I’m pretty sure Will is tired of seeing myself and Stuva so often – he’s still a teenage boy who really doesn’t want to hang with his parents 24/7, lol!

As I write this, Will is receiving his 2nd bag of blood today – so if you feel like you want to do something right now….I’d encourage you to donate blood to replenish the supply that we are using for Will.  While you can’t dedicate your blood for Will you can do a lot of good for someone else who might need it and just hold Will in your heart as you do….that would make us so very happy!

So, here we are on the ride – I’m finding that not only can I be holder of the “stuff” on the side I can endure the ups and downs thanks to my Spartan Strong Will, to the love of our family and friends and to the care he is receiving here at Children’s.  Having said that, I will be ready to get back to stable ground and stick to the bumper cars or some other old lady ride instead…more my speed.