Reluctant Trailblazers

Before we became “cancer parents,” my husband and I were “autism parents.” We foolishly thought that the challenges we faced as parents of a child with autism would be our greatest challenge. The universe, in its infinite wisdom and with a perverse sense of humor, replied to our arrogance with “challenge accepted.” We found ourselves as parents and caregivers to a nonverbal young adult with autism and cancer.

            As soon as Alex’s cancer was diagnosed, I tried to research the combination of “cancer” and “autism” to learn how others have handled this combination. I found nothing. No resources that fit our particular set of circumstances. Once again, we found ourselves in the position of being what I’ll call “reluctant trailblazers.”

            Alex’s autism diagnosis came in 1992, and the change in the understanding of autism and the resources available between 1992 and today is difficult to comprehend. Both were in short supply in those days, and we found ourselves having to become autism experts. Throughout Alex’s school career, we learned hand in hand with his teachers, or found ourselves becoming the experts who needed to lead the charge.

            In home therapy? Nope, not available at that time. I went to workshops and seminars and took grad classes. I learned about PECS, and AAC, and ABA, and social stories and a whole host of strategies. I learned a new language of supporting someone on the autism spectrum.

Our goals were to help Alex become all that he could be. He was an integral and active member of our family and our community. We taught others about autism by having him out in the community – whether it was learning to ask for help when he had a meltdown at Disney, or asking for accommodations on an airplane or in a museum, or having him order his own food in a restaurant using an assisted technology communication device and then an app for his iPad.

ADHD and autism, OCD and autism, anxiety and autism – all of those comorbid disorders were just beginning to be understood. How and what to medicate? We had to find doctors to work with. We still drive over 100 miles to work with a psych who understands Alex and understands autism.

As Alex prepared to transition out of the school world, one I understood intimately as an elementary school teacher, we faced the unknown yet again. How could we support him in becoming as independent as possible, and in establishing a life outside of his life with us? We can’t live forever, and we fundamentally believed that Alex deserved the same thing that other young adults want and need – the ability to grow up and go out on their own.

            The system isn’t particularly suited to that goal however; at first we were told Alex wouldn’t be able to move out (with government funding) until my husband or I died or became too old or too ill to care for him. They could also fund Alex if he or our family were in crisis. The goal of providing a smooth transition to help him achieve independence wasn’t really on the radar – at first. Eventually, we got funding and found a match for Alex and he made a successful transition to a small group home. He lives with three housemates, all young men with developmental disabilities, and has around the clock care.

            We thought we had things figured out for Alex, and John and I were figuring out how to be empty nesters. Alex’s sister was out of college, engaged to be married, and working in California. Alex was transitioning well to his group home, only 20 minutes away, and we could see him often. John and I had time for hobbies. I learned to fly, and we spent most of our free time in aviation related pursuits.

            Then cancer came calling. Alex had been in his group home for just two years. He started showing strange, seemingly unrelated health issues which I now know weren’t unrelated at all. They were all pretty ambiguous, until I found a lump under his chin. Surgery and biopsy revealed Hodgkin’s Lymphoma.

            My first reaction was that visceral reaction I think everyone must feel when you hear the word “cancer.”

            Then, immediately, “how will we handle this?”

            This is a young man that it took us six years to get to tolerate a haircut without a major meltdown.

            One who took years to feel comfortable in the dentist’s chair.

            A man who has a lot of anxiety.

            A man who cannot speak for himself.

            I looked for resources for parents of nonverbal adults with autism who have cancer.

            Once again, I came up empty.

            Once again, we’d have to figure it out on our own.

            Reluctant trailblazers.

            That was over a year and a half ago. Thank goodness I couldn’t comprehend everything Alex would have to endure, but endure he did.

            He has been in remission from his Hodgkin’s Lymphoma for almost six months. He currently receives maintenance chemo once every four weeks; a short, 30-minute infusion. Labs, consult, pre-meds, and chemo only take two hours. Relatively speaking, it’s a walk in the park. I can’t believe this new world where we live in that a two-hour chemo appointment every four weeks seems minimal.

            His front line chemo, 12 ABVD treatments over the course of six months, failed. After that, he went to autologous stem cell transplant at Froedtert. His “re-birthday” was December 28 – transplant day. We’re half-way through sixteen months of maintenance treatment.

            We had to be his advocates, and work with the medical professionals to figure out how his treatment plan was going to work. When Alex was a little boy and he needed a shot, we could hold him down. That wasn’t going to work with a grown man.

            We have had some bumps along the way. His treatment plan has required adjustments and modifications. It has been a true team approach, with Alex always at the center.

            We aren’t just his parents anymore; we are his legal guardians. It is our responsibility to make his medical choices for him. At times, that feels overwhelming. Are we choosing for him what he would choose for himself if he could?

            In the hospital, we taught his doctors and nurses what Alex’s autism was all about. They were excellent listeners and quick learners. We were there to be his voice and his interpreters. 

            What are some ways that Alex’s autism has impacted his treatment? There are so many. From the simple – he can’t answer the questions about how to rate his pain on the pain scale and we can’t convince him to measure his output in the bathroom, to the complex – he has to be sedated for every PET and CT scan, he has pulled out PICC lines and IVs when he wasn’t being watched, he can’t be left alone in his hospital room so he had to have someone with him around the clock which was, for the majority of the time in the last year and a half, my husband and/or me, we try to have at least two people with him during chemo and procedures in case someone needs to go to the bathroom or get food, and more.

            We’ve had to learn what the procedures are so that we could adequately let the doctors know what accommodations would be needed. We had to be able to prepare Alex so he would know what to expect. We had to convince doctors to let one or both of us in procedure rooms because we knew that was the only way the procedure would get done.

“If you want to stick a catheter in his jugular while he’s awake, you’re going to need one of us there holding his hand otherwise, good luck with that.”

“Leave a catheter inserted in his jugular and send us back to the hotel room and come back for another round of stem cell collection tomorrow? Umm – no.” So they took it out and reinstalled it again the next day. Typical procedure? No. Preferred procedure? Definitely no. But it’s what needed to happen for Alex.

Thanks goodness for a transplant coordinator, doctors, PA’s and nurses who were willing to listen. Together, we figured it out. Some issues we predicted; some surprises came along the way and we dealt with them as they came.

            So now we can add cancer experts to our resume. We never found that website, or pamphlet, or book that told us how that would all work. I suppose we could write it now.

            Next step – living as a cancer survivor and getting back to the work of letting him grow up and become more independent.  

            I confess I’m not even comfortable using the word “survivor” yet, like I don’t know if I’m tempting fate to smite us down for even daring to use the word. But, at least for now, he’s in remission, and we’re figuring out this new normal. He’s back in his group home, going places with his housemates, going to his part-time job, and getting stronger day by day. And we’re back to trying to learn to let go.