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:
Our
thumb’s up phase:
And our silly faces phase:
And
these games, coupled with the constant companionship of Royce’s stuffed pet,
“Cow,” help keep a non-fun experience pretty fun, through dressing changes,
injections, ports, medicine and beyond.
But
it isn’t always easy. It can be pretty rough too. The hardest for Royce happens
to be the port he has in his leg. He just hates wearing it, putting it in,
anything. We had to really work through options for this to work and my heart
goes out to him when he has no choice but to get something that he dislikes so
much.
ABOUT
AUTISM AND CANCER
By
no means does my two-month journey make me an expert but I have
seen and experienced a number of things in this short time, and can say
definitively that there is very little information availalble about when this disease and disorder intersect. A Google search returns some early
clinical genetic studies and some conspiracy theories,
which aren’t very helpful when navigating the day-to-day of our current
experience.
It
is incredibly interesting to see the ease and challenges of each and how they relate to one another. For instance, I noticed that the
cancer community is encouraging in a different way than the autism community,
maybe because the disability isn’t hidden – such as when a person has hair
loss. It isn’t better or worse, just different.
Royce was hugged by a
70-year-old with cancer in the grocery store while we were buying dinner. It reminded
me that we can always go that extra mile for those experiencing any condition, whether it be cancer, or a mom and child experiencing a particularly brutal
autism behavior. I see how much it means to overcome fear and offer encouragement and hope whenever possible.
As
another example, an autism mom (and one of my favorite people on the planet!)
brought me a toothbrush and kept Royce swimming in Legos during his hospital
stay. Autism advocates from around the country sent Royce cards and gifts and
books and letters of encouragement, which was truly incredible and helped him
to feel positive and upbeat despite his challenges.
There are never enough “thank you’s” I can say for the kindness that has been demonstrated to our family
during our time of need – from our friends, colleagues, clients and beyond. But
it reminded me how important it is to lend support to those who need
it, and never to take for granted the opportunity to help when we are
feeling healthy and have a little bit extra to give.
Another
interesting difference we noticed is that cancer treatment is so
incredibly organized and efficient, right from the start. For cancer, we didn’t leave
the hospital until we had everything we needed to face a future with cancer
treatment physically in our possession and Royce’s case managed efficiently and
expediently.
It took a day for our cancer lives to be dialed in. It took six
months or more for our autism lives to be dialed in, and we were lucky! Having
treatment available so quickly was new to us, and was actually a calming and reassuring
part of our experience. There was no struggle between parents
and doctors and the course of treatment began immediately upon diagnosis. WOW!
We
also noticed that life goes on and childhood goes on. Even in the face of any
challenge. While under treatment we hiked, climbed, did egg hunts, spectated
sporting matches, learned how to pitch a baseball, flew kits and more. These
activities helped us to have fun and appreciate the limited time we had outside
of the hospital. We spent time celebrating our successes rather than lamenting
out challenges and this turned into not just a time we will always remember,
but a time we will also treasure.
We
also noticed that life goes on and childhood goes on, even in the face of any
challenge. While under treatment we hiked, climbed, did egg hunts, watched sporting matches, learned how to pitch a baseball, flew kites and more.
These
activities helped us have fun and appreciate the limited time outside
of the hospital. We spent time celebrating our successes rather than lamenting
our challenges and that turned this into not just a time we will always remember,
but a time we will also treasure.
The
other thing that deserves mention is how much ABA has helped us through this
experience. It turns out that the same techniques that help my rigid and
aggressive child with autism cope with daily life, also help him cope with extreme
situations like a very intensive cancer treatment, biopsies, surgery and more. The same drill that promoted flexibility in home or school during a minor
change in routine translates really well to complicated and uncomfortable
dressing changes, unknown cancer treatments and more.
His developmental
pediatrician and all the nurses at the infusion center have complimented his
adaptability and compliance, saying that it is beyond his years. I think some of this relates directly back to his past five years of ABA, which has helped to really
drive home tools and coping and calming strategies that apply in any
situation, including chemo!
There
have definitely been times where the comorbid conditions of autism and cancer
have been very relevant to Royce’s treatment and care. He can’t answer
questions about his experience very well at times, though he uses advanced
language, which is part of his challenges with communication. We have to help
him share his pain levels accurately. He doesn’t always like to play games or
be distracted the same way as other kids. He needs to be prompted more
frequently than other kids his age. And that is just part of his journey.
Our existing relationships with those who can help him with his autism have
helped us navigate this in a way that was tailored to his needs and strengths
and challenges.
CLOSING
WORDS
While
nobody really knows how any part of treatment is going to go for Royce, because
cancer and chemo is different for everyone all the time, we are certainly
thankful to the interdisciplinary teams at Children’s Hospital LA for helping
us to navigate this complicated process efficiently and thankful to all our
friends at Autism Speaks Southern California and the broader autism community
for their encouragement and support.
I
talked with a lady who lost her son after an 8-month battle with pediatric
Hodgkin’s, and she told me, “when he feels good, you help him have any
experience he feels up to having. That time is precious” – and I agree! Our
lives and our perspective have been forever changed by this journey and for
everyone who has been by our side along the way.
For helping us to help Royce enjoy
the days he is feeling good, we say a huge “thank you!” And since today is a
day Royce is feeling good, I have to get back to helping him have a fun
experience!
Jess Block Nerren is a
publicist and mother, living in Southern California with her son, Royce, and
husband, Dylan. Block Nerren, an MA in Communications, is Publicist and
President of Felten Media Services, a boutique public relations shop that
donates between 15%-20% of the shop’s efforts to support Autism Speaks and
other autism-related community initiatives. An avid supporter of autism educational
and health rights, Block Nerren is publicist to a bestselling autism author, is
Communications Chair of Walk Now for Autism Speaks Southern California, sits on
the Children’s Hospital Autism Treatment Network Parent Advisory Board, was a
founding Board Member to Project Miracles, and is a Board Member-at-Large for
the Riverside County SELPA, the largest special education local plan area in
the state of California serving over 25,000 special education students.
(Photos
courtesy of Emily Kye, Rex Sanchez, and Jess Block Nerren)
