Wednesday, March 18, 2015

Last Year's Plane Ride...

One year ago today, Braden then 9, Zach then 10, and me then 39+  boarded a plane to Philadelphia so Braden could have a bone marrow transplant for his secondary treatment-induced leukemia. His only hope of surviving was for Zach's bone marrow to be transplanted into his after we killed off his own bone marrow with high dose chemotherapy.

Then Braden's body had to not reject his brother's bone marrow and the cancer had to not relapse.

Well..cancerS had to stay quiet.

The concern was that Braden's initial cancer, neuroblastoma, would come back once we knocked out Braden's own immune system. He had relapsed with that cancer when he was five and there is no known cure for relapsed neuroblastoma. We did some "crazy" treatments, a phase one study in which he was one of only three children in the world who got it, and various other treatments to teach his own immune system to recognize any neuroblastoma cells and keep them dormant or kill them.

So once we knocked out his own immune system, Zach's cells would not have that same immunity and any dormant neuroblastoma cells would come back. And he would die.

But if we didn't do the transplant, he would die from the secondary leukemia.

Choosing a treatment path was very much like choosing how we wanted Braden to die.

So we chose HOPE. Braden is a fighter and if he was going to die, he was going to die fighting.

Our teams in Philly and KC have never seen a child survive this type of secondary cancer after neuroblastoma.


That reality never leaves my mind...or heart...for one minute of any given day since his diagnosis.

I did what mother's do, I tried to figure out things that I could do to make this transplant as comfortable for Braden as possible.

So I shipped all of Braden's favorite toys and comfort items to The Children's Hospital of Philadelphia and packed clothes for two and a half months and two seasons. With his autism, it was important that we had as many familiar things for Braden as possible. I packed up his BatMan headquarters, his "guys" which are a mismatch of small plastic figures of Star Wars Characters, Avengers Figures, and Power Rangers guys, his favorite blankets to snuggle in, anything that would make the hospital feel more like home but could be washed every day or wiped down to sani-wipes to keep them germ and dust free while he had no immunity.

I am a planner, a strategic packer and I bring everything including the kitchen sink (well....not really but I always have plenty of wipes, so sort of).  I had two suitcases filled to 49.999 pounds of imporatn stuff, and a shopping list of items to get once we arrived in Philly.

And we had Braden's three stuffed tigers. Braden goes everyplace with his three stuffed tigers, they are family. They sleep with him, they ride with him in the car, they always go to the hospital, they ride in the plane, they go everywhere with him because they are his heart.

We got up the morning of March 18, 2014 and traveled to the airport. We boarded, took off and flew to Atlanta, which is clearly in a direct path between Kansas City and Philadelphia. ?? 

Both boys were excited about flying, Braden because he loves when the airplane bounces in the air so he can hold his hands up in the air and yell, "WHEE, THIS IS FUN!" as if he's on a roller coaster. Zach was excited because he was going to get a soda, which is normally not something I allow him to have at home. He feels like a total rebel when he gets one.

Then the next leg from Atlanta to Philadelphia...

We landed in Philly and heard Braden's familiar, "YAY AIRPWANE, Good job airpwane!" each while he clapped loudly and everyone near us giggled. It happens every time we land. (it is pretty cute)

What I remember isn't so much that he said it again, but that I felt warm tears running down my cheeks when he said it.  I don't just don't, but there were those dang tears running down my cheeks at that moment. Why in the world were they there? We had 6 days of testing before he was even going to be admitted into the wasn't time to cry yet, we were just landing. Crying now made no sense.

I hadn't scheduled tears on my agenda for today and I had to get two boys off the plane...why were these stupid tears coming now? I was angry because I don't cry, especially in public but I couldn't stop them from flowing even though I was trying frantically to end this public show of emotion.

I sat in the seat,  packing his tigers in his backpack and making sure we didn't leave anything behind on the plane while the tears continued to roll down my face telling myself to stop it right now,

when it hit me.

I wasn't sure I would ever hear him say that adorable phrase ever again.

I wasn't sure he was going to survive the chemo and his transplant so this airplane ride could easily be his last trip.

We walked out of our house that morning for what could be the last time he would ever be home, We said goodbye to our cat, Indy, and our fish, Darlin'...

We left everyone we loved in KC, all of our friends, and neighbors, Braden's best friends, who are his heart and soul, for what might be the last time we would ever see them...

everything we did that day was a potential last because it was quite possible that he was not coming back to Kansas City with us.

Over the past seven years of continual treatment, there have been more times than I can count that I have been terrified that we were at the end.

March 18, 2014 was another of those times.

It was so much more than a flight to Philly, with a stop in Atlanta.

It was the beginning of what we hoped would be a...

well, what we hoped would be a beginning.

And thankfully, it was.

Yesterday, Braden and Zach and I went on a four mile hike for two hours and I was the only one who was tired and ready to leave. Braden begged to stay and "go again?"

I have no idea what we will do today in celebration of Braden being here one year later. The odds were very much against him still being here today.

The beauty of today is that we can do whatever we want to do today...

we can do whatever the four of us want to do today, the possibilities are endless because we have been blessed and fortunate enough to have had another year with Braden.

Don't take the ability to make choices about what to do with your family each day for granted.

Every day is a gift and begin able to simply choose to do something as mundane as going to the store with my kids is...