This week I want to share a guest post from Jess Block Nerren. Her son has autism and was recently diagnosed with cancer.
Here is her heartfelt story:
Autism
and pediatric cancer. Autism and Hodgkin’s Lymphoma. No matter how you say
those two together, it sounds tough.
My
son Royce, 8, with autism was diagnosed with Hodgkin’s Lymphoma about 60 days
ago, on March 3, 2014.
We
went to the hospital for back pain, and 11 hours later we were on our way to
Children’s Hospital LA for Lymphoma. And now here we are, midway through a
4-month cancer treatment.
It
has certainly been a wild ride. We have had days far easier than expected, and
ones far harder than expected. Our experience just fluctuates wildly, with virtually no notice.
AS A
MOM
One
day all the hair on my son’s head jumped off his head from the chemo. He lost it in less than a day, during class and during a birthday celebration for a classmate. As his hair covered a classmate’s desk, he just said “Look, that’s my
hair.” And then he casually went back to doing his classwork.
We shaved his
head later that day and looked up a lot of bald jokes to tell my bald husband.
We make the effort to keep it fun and light, but hair loss is something that is hard even for fully-grown adults to go through. All of this is hard, so hard, but Royce will do better if he doesn’t see us sweat. So my job is to make this huge effort as effortless as possible, so that he can get through it. And for him to still have fun and be a kid while all this goes on around him.
One day, Royce went into an anaphylaxis allergic response and stopped
breathing while receiving chemo. They said I was the calmest mom they had ever seen
who had a kid stop breathing in clinic.
I
just notified the medical assistant doing paperwork outside our room.
“Excuse
me but my son says he can’t breathe.”
“What?!?”
She
jumped up, with her workstation still surrounding her and rising up with her
as she leapt out of her seat.
As
20 or so people filled the room to give Royce the epi-pen, I began moving
furniture out of the way so they could get to him with the crash kit
efficiently enough to help him. The whole thing lasted a matter of seconds
seconds and he was fine. In typical Royce fashion, when I told him we would be
back in clinic the next day, he just asked not to have that medication again, and upon confirmation, went back to reading the encyclopedia of
baseball.
We carry the most random assortment of medical supplies with us everywhere we
go. Clamps for his central line, in case he starts bleeding out of his line. An
epi-pen, in case he stops breathing again. A thermometer to constantly monitor
his temperature. Baby wipes and hand sanitizer to maniacally ward of infection and germs because now it is literally a matter of life and death.
Anti-nausea pills. Extra medication and IV supplies. We average a trip to
clinic every other day and on the days we aren’t there, at least one call to the oncologist for little but really important things that come up.
He takes
medication four times a day, most orally, but also by injection, both into his
IV and into his leg just under the skin. I
administer his oral and injectable medication, though I am a publicist by trade
and never touched IV supplies before in my life. It’s amazing how fast you
catch on when it is your kid, though not without my fair share of stumbling blocks. I’m much better at publicizing a 60,000-person autism walk than serving as a de-facto nurse and much better at doing IEP’s than creating a sterile field.
But Royce and I joke
about my missteps, which illustrate that nobody’s perfect. I get bubbles out of
saline injectables by shooting liquid onto the ceiling, or myself, or him, or
the cat. I accidentally stabbed my finger with a sterile needle. Heck, I
accidentally set a hamburger on fire our first week out of the hospital!
But with time, I think I’ve actually gotten pretty good at all these new
routines in our life.
FOR A KID
It
is beyond amazing to see how incredibly a child can handle a challenging
situation. Royce’s strength and courage and communication and acceptance
through all of this have been truly unparalleled. His bravery and spirit keeps us going because he is so
determined.
Does
that sound like a cliché?
Probably,
but it is worthy of mention, because it is so incredible.
Royce
jumps and hops his way through the hospital on his way to the infusion clinic. This little bald kid, with his pet “cow,” jumping for joy and it makes me
so proud to see his strength.
He
does his homework while waiting for anesthesia. He goes to class every day that he
isn’t in the clinic. His mantra has been, “I’m OK, and if I’m not OK, I’ll let you
know.”
So we take him at his word and we go with it! I can’t say enough
amazing things about his school. They welcomed him back to class with open arms
and truckloads of encouragement. He is cleared to play at recess and plays with
his friends. His aide helps him like always, just for a couple extra
things now as well. Everyone gives him hugs and high fives. He says he “feels
better by talking with his friends,” and this camaraderie among educators and
students and my son is beyond touching.
We’ve
gone through our therapy dog phase:
