Friday, January 1, 2016

Where We Are . . .

Most of you have been following Sawyer's battle against cancer via his Facebook Community "Sawyer's Warriors" or his CaringBridge page or maybe you've happened upon our Family's Instagram Account?  I have tried not to write too much about my own experiences there, as those pages are for Sawyer and his warriors.  I have tried to keep my fears and related thoughts off those pages as much as I could . . . but we've reached the time where that needs to change.  I don't want to start an entire new blog, and figured my posts about my own and my family's take on everything, makes the most sense here.  It's a blog I was going to start making more use of before his diagnosis . . . and then of course in April, everything changed.

If you don't know Sawyer or the Awesome family, I should probably catch you up . . .  Sawyer was diagnosed in April with Stage (3/4) Burtkitt's Lymphoma.  He went through several different chemos since.  At first it looked like everything was going to be okay but he was later reclassified as Refractory Burtkitt's . . . growth happened even during the strongest chemos.  We were set for a stem cell transplant as our last option . . . but then cancer grew, so a few days before we were set to transfer to UCSF (from Kaiser Roseville) in November, it was cancelled.  The last hope, a UCSF 500 genome test, which we knew was still really only treatment not a cure, came back the week before Christmas telling us that there was nothing that could be done.  So we continue with the plan we've had since his stem cell was cancelled- weekly infusions to hopefully slow the tumors and radiation for pain as needed. 

Sawyer has been amazing through it all- smiling, not giving up, making the most of everything and rarely complaining.  As a family we have kept moving forward, thinking there was always something else.  And there was, until there wasn't.

Sawyer's family, which for him is two households (Sawyer's dad and stepmom at one house and me and his other step mom at the other).  It hasn't been easy to co-parent through cancer (but that's another story)  Sawyer has definitively made it "easier" on us (if it could be easy) . . . he has shown nothing but grace, dignity and a positive attitude through it all.
He knows he could die . . .  he knows that kids his age, that have his type of cancer don't make it to middle school or high school . . . we have always told him that we won't give up but we are going look for options that fit within our goal for him, which is to have him with us for as long as possible, while keeping him comfortable and able to partake in life . . . however long that ends up being.
Erin (my wife) and I are trying to help make as many memories as possible for our family and soak in as much of our youngest as we can.  We're in a group for mothers who have lost their kids to cancer to learn as much as possible.  We are trying not to mourn him until he's gone- easier said than done.  At the same time, we are trying to do what we've done since Day 1- bring awareness to childhood cancer.  Sawyer has had so many supporters.  I know that when he leaves us, there will be thousands of people who will be so saddened . . . and angry.  Hopefully angry enough to fight cancer head on.  They have already seen the light at how little funding childhood cancer gets . . .  even more so with a rare cancer like Sawyer's. :(
Below was a post I made on his CaringBridge, because I hadn't made the decision to write here yet . . .

We are making the most of our time.

We are LIVING.

We are SMILING. LAUGHING.We are crying and planning and worrying.

We are scared.



I know that sounds weird but through Sawyer's battle, I have always thought . .. "It could be worse."  And even with death, it could still be worse.  We could have lost him back in April, we almost did, did I ever tell you that?  The same exact month, a little girl, in our area, around Sawyer's age, was hospitalized for the EXACT same thing . . .  Intussusception caused by a very rare cancer, Burtkitt's Lymphoma.  But her fight never even got to start.  So see, it could've been worse.  We were given 8 more months (and counting) with our Sawyer and I wouldn't change that for anything.  I was given an extra 8 months (so far) to continue to show him how much I love him and I've gotten to see firsthand that the kind, funny, smart, sweet, loving kiddo we raised is also my hero.


He is STILL SMILING.  After all of this, still smiling.  Take a few minutes to let that really sink in.
He is BRAVE . . .  Oh my god, is my little man brave.  I hope for MANY THINGS in the time Sawyer and I have left together.  Most of all, I hope his bravery rubs off on me because I really need it for the next few months and for all the years I won't be able to hug him or tuck him into bed.  I need it.  We all do.

Be Brave Everyone.  And Smile.  Because if he can, we can too.