Have Yourself a Merry Little Christmas

I really love Christmas. I love Christmas magic.

I love everything about it. I love decorating the tree, I love giving presents (although I hate shopping in crowds), I love baking, and I love Christmas morning. I love watching It's A Wonderful Life in my pajamas and I love spending time with my family.

When I was a little girl, I would get so excited for Christmas Tree decorating that I would wind up with a terrible stomach ache. My sister would put me on the couch with white soda and saltines. I remember the smell of our Christmas tree and the look of the large colored bulbs and metal reflectors and the tinsel. If you watch the new tv show "This Is Us," their tree looks just like our tree in the 1960's and 1970's.

Carrie (Me) and Mom (Bunny) circa 1967

The "stain glass" windows were inserts made from gels that my sisters made.

Carrie (Me) decorating the tree circa 1972

I think this picture might be backwards; I don't remember the tree being in that corner.

Carrie (Me) in the pink Hard Rock Cafe sweatshirt and my sister Beth's family at my house, Christmas morning, 1987.

I love Christmas music. Growing up, I remember when my dad would buy the new Christmas music anthology album at the hardware store every year. I played them over and over.

One song that brings back childhood memories is "Have Yourself a Merry Little Christmas" by Judy Garland. Mom mom loved Judy Garland.

It's not that my Christmases have been picture perfect; they haven't. Some years, it's been a real struggle to match expectations to reality.

Christmas and Autism are a tricky combination. The change in routine, intensity of sights, smells, and sounds, and parties and gatherings are all tough stuff for someone on the spectrum. Creating holidays that were not overwhelming for Alex and helping him be a part of the celebrations took many, many years of effort. John and I always had to have a game plan. When it was my side of the family, he would take Alex home early when he got overwhelmed. When it was John's side, I went home early. Some years, a grandma would fill in with him so that we could stay longer with the other family. We'd find someone to come stay with the kids so that we could sing for midnight mass (which, at our church, was actually at midnight) because being in church at midnight was not something Alex could do, even as he grew older.

We had to teach Alex how to open Christmas presents. He loved Sesame Street, and I managed to find Sesame Street wrapping paper. He wasn't intrinsically curious about what was in the wrapped packages, so I had to make him curious. Even so, it could take a week for him to unwrap all of his gifts. We had to let him take it at his own pace. (That was torture for his older sister.)

Cancer has tried it's best to destroy Christmas. 

Dad was diagnosed with esophageal cancer in December of 1993.

He died December 23, 1994.

Alex spent last Christmas in the hospital undergoing a stem cell transplant.

This Christmas, his cancer is back and the future is terribly uncertain. I can't allow myself to think about how many more Christmases we may have.

The Christmas that dad died, Alex was four and Jessica was six. John and I were with my mom at dad's bedside when he passed. We made funeral arrangements that day, my brother stayed with mom for Christmas, and we still made Christmas for our kids. Dad's funeral was December 26.

Dad loved Christmas and as much as I missed him that year and every year since, I know he would want me to make the most of it with my own little family.

This Christmas will be the first without my mom, who passed away in July.

Last year, we were in the hospital for Christmas for Alex's stem cell transplant. That was rough. But in the end, we made our own Christmas.  I guess it was like the Who's waking up on Christmas morning after the Grinch stole everything, and they still lifted their voices in song.

Alex's hospital room door, Froedtert Hospital, Dec. 22, 2015 - Jan. 11, 2016.

Alex, Dec. 22, 2015

Alex and "Relativity" Christmas Caroling at the hospital, Dec. 2015

After Alex's stem cell transplant, he was in remission for eight months. That all came crashing down on October 17 when we learned that he had relapsed. (Setback)

Alex has had two cycles of a clinical trial in an effort to beat back the cancer. This is not a curative treatment. Our options at this point are not curative. We learned last week that Alex's cancer has responded to the treatment; a new PET scan shows that the tumour has shrunk. But things are never simple when cancer is involved. He is in the midst of a tremendous rash (covering more than 75% of his body) that is a reaction to the treatment. Next week we find out next steps.
In the midst of all of this, Christmas is fast approaching. We have all these fears and feelings to deal with. Holidays bring up wonderful, warm feelings, but they also have a way of accentuating less desirable feelings. The thing is, they are all authentic feelings. Christmas brings up so many memories.

The awful reality is that I don't know how many more Christmases we have with Alex. His cancer is one small spot right now, and his doctor says it is slow growing. We haven't been given a timeline, but I do know that it won't be as many Christmases as I want.

But I am determined to make this Christmas a memorable one. We put up the tree together. Sunday will be our cookie baking day. We have plans for Christmas Eve and Christmas Day. We will celebrate again with our "Relativity" family, just like we do every year, just like we did when Alex was in the hospital.

We will make more Christmas memories. We will envelope Alex in love. We will lean on those we trust most. I am sure that I will feel a wide array of feelings. I will have my moments of sorrow, worrying about what Alex's future will bring. I will have the bittersweet memories of my parents. But I will also feel the love that my parents gave me. I will feel the love I have for my own family.

I will feel Christmas magic.

Have Yourself A Merry Little Christmas

by Hugh Martin and Ralph Blane

Have yourself a merry little Christmas

Let your heart be light

Next year all our troubles will be out of sight

Have yourself a merry little Christmas

Make the yuletide gay                                      

Next year all our troubles will be miles away

Once again as in olden days

Happy golden days of yore

Faithful friends who are dear to us

Will be near to us once more

Someday soon we all will be together

If the fates allow

Until then we'll have to muddle through somehow

So have yourself a merry little Christmas now

Pike's Peak

John and I visited Pike's Peak in Colorado this summer. We were in Colorado Springs for a wedding, and didn't have a lot of free time for sight seeing, but we made a last minute decision to drive to the top of Pike's Peak. I did a quick search online for things to do and saw there was a scenic drive that would take about two hours round trip. We hopped in the car and took off.

I forgot to think about the fact that I'm afraid of heights. (Yes, I fly an airplane. No, my fear of heights isn't a problem when I'm flying.) My fear of heights isn't necessarily consistent; however it turns out that driving on narrow, winding roads triggers that fear. I may have had an actual panic attack on the way to the top, and I was uncharacteristically quiet.

The drive was beautiful, and once I adjusted to the view, I relaxed a bit and enjoyed myself. John and I did it together, like we've done most everything since I was 17 years old.

I was reminded of that drive today when we had an appointment with Alex's psychiatrist. The appointment was very timely, because we got the news four days ago that Alex's cancer was back. We're struggling a lot with the prognosis and the knowledge that we are dealing with an almost certainty that cancer is what will one day take his life. 

Alex's psychiatrist made the analogy that dealing with a diagnosis like this is a lot like driving on a winding mountain road. You can't see around every curve and at some places there are dangerous drops, but if you keep your eyes right in front of you, you can drive and the view is beautiful.

He also reminded us that we aren't going to be able to process all of these feelings overnight.

But today was a beautiful day. We had a lovely drive and admired autumn in Wisconsin. The leaves were beautiful and the sky kept changing. We had a visit with Alex's doctor, and then we went to Rocky's for lunch - one of Alex's favorites.

We learned today that Alex's treatment starts next week. We enroll him in the clinical trial on Monday, and go back for the first treatment on Wednesday. Froedtert is familiar and we trust his doctor and his care team. We're going to face this as a family and I'm going to do my best to only look at the road right in front of me. I'm not going to try and see beyond that bend, and I'm not going to look over the side. And, just like my trip to the top of Pike's Peak was ultimately worth it, I know that however this journey ends it will have been worth it. My life has been made so full and rich with Alex in it and I'm going to savor every moment.

Setback

It's not like I didn't realize that a relapse was possible, or that I was unprepared for bad news. I had spent the days leading up to the PET scan trying to not give in to the feelings of anxiety and dread.

Anticipating a possibility and experiencing the reality are not the same, it turns out.

The sentence that I can't get out of my brain is that the treatments are "not curative."

Not Curative.

I had let myself begin to believe that Alex had a future; that he had fought cancer an won.

Now I can't breathe.

We were told that Alex was "lucky" in the cancer lottery; Hodgkin's is the "good cancer."

There's no such thing as a "good cancer." Cancer changes you and those around you. They say that when someone has cancer, the family has cancer. That is so true.

In the beginning, we were so hopeful. Six months of chemo and then Alex would be one of the 80% who were in remission and, hopefully, could eventually be considered cured.

That was not to be. So we prepared ourselves for the next battle. Salvage chemo and a stem cell transplant. And we made it through. Alex got a clean PET scan in February, and started consolidation chemo - brentuximab, a newly approved drug to keep him in remission.

This week was a routine PET.  A new spot lit up in his chest. They showed us the scan. They started talking about what to do next. They outlined two choices - a clinical trial or a newly approved immunotherapy drug.

That's when the doctor uttered the words, "neither option is curative, but some patients have stayed in remission for a long time."

We're taking the clinical trial. It also an immunotherapy. The rational is that at some point this drug will either not work or it will stop working and then we'll move to the already approved drug. If we start with the FDA approved drug the trial won't be an option once the other drug fails. This way, we have two options.

We were afraid to ask what "a long time" means.

The reality of Alex's cancer is washing over us in waves - waves of fear and grief and loss.  Grief and fear because now we know what our son will die from. He will die from Hodgkin's Lymphoma. We just don't know when. We don't know if he has weeks or months or years. Somehow we have to come to terms with this reality, we have to shore ourselves up to continue the fight, and we have to live in the time we have left.  Juggling all of those realities seems incomprehensible at this moment.

We're not just Alex's parents, we're his legal guardians, the legal decision makers. We've been making decisions on his behalf for his entire life. Now we're faced with the reality that we'll be making his end of life decisions. I don't know how I'm going to help my son die, and I don't know how I'm going to survive.

In the meantime, we have to be strong for him. We have to support him through this. We have to be hopeful and pragmatic at the same time. We have to put his needs before our own fears.

And we have to live life in the meantime. It's truly "bucket list" time. But Alex's life never looks like someone else's, so even the bucket list idea is fraught with complications. What does he want? His life is actually pretty simple. He likes time with his family. He likes rides in the car, and watching movies, making cookies, and going out to eat. We've decided to rent a motorhome and drive around Lake Michigan.  The family trip to Disney that we were planning for next fall as an "I kicked cancer's ass" celebration may need to be moved up. I don't know if we can wait a year. Will this be our last family trip to Disney? Or will he be around long enough for another one? I don't know. He's not one for grand gestures or lots of commotion. We have to figure out how to make more family memories while we have the chance.

We've been strong for two years. We've been strong for 24 years, I guess, since he was diagnosed with autism. Always looking at the positive. Pushing aside the "what ifs" and the grief and the jealousy of what other people's kids could do. Learning that there are lots of ways to live a life of value. But at this moment, all I can see is that Alex got dealt a pretty crappy hand. His life has not been easy. But we, and he, forged a pretty great life. We've always tried to figure out "what's next" and help him reach whatever he could.

But now there's no "what's next." I'm sad, and I'm angry, and I don't have the energy to put a brave face on it for everyone else's sake.

I know I can't stay in this place. Alex is here today. And the options aren't exhausted yet. But it's hard to stomach the fact that the fight is only to buy some time, and an uncertain amount of time at that. I've always worried about what Alex's life as an old man would be, and what would happen if he outlived Jessica. Now....

None of these words adequately express the depth of my feeling. When I was in high school I worried about having to "be brave." I don't even remember what I thought I had to be brave about. Years later, my mom would remark that we didn't know just how brave I'd end up having to be. I know that one of the main reasons she was so upset when her healthcare power of attorney was enacted, putting me in charge of her medical decisions, was that she thought I had enough to worry about with Alex.  She saw Alex a few days before she died, and he was in remission and doing well. I'm glad she's not here to go through this.

I just don't know how we're going to do this - other than doing it as a family, as we've always done everything. It's time to figure out how to meet the greatest test we've ever faced.

If I Could Read Your Mind...

If I could read your mind, love
What a tale your thoughts could tell
Just like a paperback novel
The kind the drugstores sell....

"If You Could Read My Mind," Gordon Lightfoot


What would Alex tell us if, suddenly, he were able to communicate his deepest thoughts?

That is something I wonder daily. I remember the first time I heard the expression "not being able to speak is not the same as having nothing to say."

People sometimes assume that because of Alex's disability he does not have deep thoughts, or maybe they just don't think that much about it. Those are the people who comment with amazement after spending time with him their realization that he has "a lot going on."

We try to read it in his face, in his body language, and with the communication he does possess. We've tried so many ways over the years to help him communicate. Although we've had break throughs, his communication is still quite limited and confined mostly to requests and commenting about concrete things through the use of his communication app on his iPad.

When he was about 8, his teacher suggested we try a communication system called "PECS." This Picture Exchange Communication System involved creating small, square icons and teaching him to exchange the pictures for concrete objects. I attended a two day training along with Alex's teachers. I was so excited that I started working with Alex as soon as I got home. You start with something concrete and motivating. I taught Alex to request Doritos.

Within days his communication exploded and he was able to string together words to create sentences such as "I want Doritos and Hi-C and swing." He would look all over the house for his dad or me to make the request. PECS showed him how to initiate communication and that part of communication was having a communication partner.  It was a huge break-through. I learned to love the sound of velcro as we could hear him putting together his sentences.

I bought a laminator and a scanner and created PECS boards for home and school. This was circa 1998, and we didn't have the internet to find pictures or digital pictures. I remember scanning actual packaging from Doritos and Mac and Cheese and whatever he liked to make the pictures. I also used icons from a program called Boardmaker. At the training, they said students were significantly more likely to be successful if they used the PECS system at home and at school. I made the pictures and set Alex up with everything he needed. John and I have always had the philosophy that we wouldn't ask school to do more than we were willing to do ourselves at home.

Alex did great with PECS, but eventually his book was large and cumbersome and we could tell he was ready for more. He used it primarily for requesting food and activities, and his communication was basic, but he had learned what communication was.

Next, his teacher suggested an AAC device. We had to go through an agency, conduct a trial and collect data to prove he could use the device to let us know if he were sick or injured so that his doctor could write a prescription for it so we could get insurance approval. It took about a year to go through the whole process, but we were able to acquire an $8,000 DynaVox MT4.

By today's standards, the unit looks heavy and clumsy. In the early 2000's, it was amazing. We could have layers of pages and hundreds of vocabulary choices. The unit had a voice output, so Alex could communicate more independently. It was, in its day, considered portable. He carried it back and forth between home and school and we tried to take it everywhere we went. We took it out in public, and he learned to order food in restaurants and we tried to integrate it into our daily lives. It wasn't perfect, but it made a difference.

We took Alex to visit his sister, Jessica, at MIT her junior year. While we were there, we had the opportunity to visit the MIT Media Lab and meet with some grad students working with Dr. Roslyn Picard. They were developing biometric devices for use with people on the autism spectrum. They spent a couple of hours with us, showing Alex some of the devices they were working on. It was an incredible experience.

It was about this time that apps for iPods were beginning to explode. On our drive home from Boston, John and I kidded that what we needed for Alex was a communication app. Once we got home, I starting looking for something and discovered an app called Proloquo2Go. It was in beta testing, and we bought it for Alex the day it was released. That was in spring of 2010.

Alex would be described as someone with "complex communication needs." The whole area of AAC is undergoing a great deal of change, and I'm doing my best to keep up. I was trying to figure out how to help Alex to the next level of communication when his cancer was diagnosed, so new communication ideas took a back seat to cancer treatment. Now we're back to trying to help Alex expand his communication.

My hope and my goal is to someday make that break-through to help Alex communicate beyond asking for pizza or for a ride in the car.

We've been practicing with his P2G (Proloquo2Go) on his iPad mini and he's made some interesting comments lately.

At a recent chemo appointment, he was talking about his blood draw and labs. Then he exited that screen and found the button for "new topic." This was not a word I had modeled and it was on a page I hadn't seen him access before. Coincidence? Perhaps. But I like to think it was purposeful on his part.

Alex has shown many times that he has the persistence necessary for communication. He has learned to try to repair communication breakdowns. I really feel he is ready to take a next step. And I know I am so ready to finally hear what he has to say.

Despite his communication challenges, Alex manages to make his point, often in interesting and amusing ways. We have some favorite stories of his communication attempts, particularly when he had to persevere because his family was too thick to catch on.

White Chocolate Almond Bark - when Jess and Alex were much younger, maybe around middle school age, the three of us travelled to Door County for the day. This is a tourist area in Wisconsin with beautiful scenery and lots of small towns with a variety of shops. We were in a candy shop, and Alex started pointing at some candy in the display. It was white chocolate almond bark. He doesn't like nuts and, to my knowledge, had never had white chocolate. You should also know that Alex is someone who does not try new foods easily. It can take a year to entice him to try a food that he is curious about, and it's almost impossible to get him to try something new that he isn't interested in.

So I told him no, he didn't want the white chocolate almond bark. Well, we went to several more candy shops that day, and in each shop he asked for the white chocolate almond bark. He couldn't verbalize it, but each time he found it in the glass display case, and touched the glass and looked at us. Finally, I relented and bought him some. He ate it most enthusiastically. The boy who never tried new foods ate all of this candy I didn't think he'd ever seen before. That day still stands out to me as a time when I learned that Alex was in fact capable of knowing his own mind and finding a way to get his point across. 

Jessica and I still laugh about this today, in part because we were so thick and didn't listen to him, but also because we visited so many candy shops that day.

Firefly by Joss Whedon - another favorite family story is how Alex introduced our family to the series Firefly by Joss Whedon. We were in Best Buy, and Alex chose a random (or so we thought) DVD off the shelf. It was a box set of a tv series we had never heard of. Once again, we told him "no," he didn't know what he was asking for. Over several months, each time we visited Best Buy, he would go to the display and find Firefly and take it off the shelf. Eventually, we decided to let him buy it. We thought for sure he would lose interest and that he didn't know what he was asking for. Even though our family already loved Joss Whedon and were big Buffy the Vampire Slayer fans, we didn't know about Firefly. 

We watched the series when we got home. It is now a family favorite, and watching Firefly cemented our love of all things Joss Whedon.

I still don't know how Alex knew about the series, but I no longer think his choice was random. I believe he knew what he was asking for.

Two by two, hands of blue - my third story happened just recently. Alex and I were at a craft store, buying supplies for my classroom. He saw something that caught his eye, and made a bee-line for a display. It was a paper mache hand. He took it off the shelf, looked at it, then put it back. We went to another part of the store and I was looking at items I needed for my project at school. Suddenly, he turned and bolted away. I followed him, and he went back to the display of the hands. He took one, then tried to take all three from the display and put them in our cart. I only let him buy one. We then went and met John for dinner.

I told John the story, and after dinner I went to do errands and he took Alex back to Alex's house. On their way, John had to stop at a store to pick something up. It happened to be next door to the craft store with the hands. It was a good thing I had filled John in on Alex's apparent obsession with the creepy hands, because as they walked toward the tool store, Alex tried to divert John and pointed to the craft store. They did not go buy additional hands, but we do have the one at home that Alex got.

When I told Jess the story, she reminded me about the Buffy episode called Hush and "two by two, hands of blue." I'm not sure what Alex's purpose with the hand was, but I bought some craft paint and I'm going to see what color he wants to paint the hand.

Someday, I hope Alex can explain to me what he was thinking in all of these situations. I hope he can tell me how he felt about his cancer treatment. I hope he can tell me his hopes and fears. I'd even be okay with him telling me all of the times I got things wrong. 

In the meantime, I'll keep doing my best to pay attention. I'll remember the lessons I've learned when I assumed that I knew better, even though Alex was doing his best to tell me what he wanted. And maybe, just maybe, someday, we'll help him unlock all of those thoughts I know he has inside.

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.

           

Anxiety, Autism, and Cancer - Oh, My!

"Lions and tigers, and bears, oh my!"

So goes Dorothy's refrain in the Wizard of Oz as they are walking through the enchanted wood.

Then they meet the Cowardly Lion.

In the end, The Wizard gives the Cowardly Lion a medal which is meant to represent Courage and we as readers assume that all his problems will disappear. In real life, it isn't that easy.

I've heard it said that courage is not the absence of fear, but acting in spite of it.

Alex has plenty of courage and uses it daily in a life that challenges him at every turn.

Anxiety has always been a big obstacle for Alex. Combine that with sensory processing and communication issues and there are many things that most people take for granted that require a lot of effort on Alex's part.

Getting a haircut?  It took about six years of very thoughtful and intentional supports to get to a place where Alex could get a haircut without having a full blown panic attack. (See "Haircut" - Haircuts)

Going to the dentist and getting your teeth cleaned? That also took many years of intentional effort and supports.

Alex has always struggled with leisure skills. It took many years of careful teaching and planning to learn to go to the movies, go out to eat, visit zoos museums, and travel.

As he's gotten older, some things have gotten easier, and other things that he loved when he was younger have gotten more difficult. My theory is that as he's gotten more engaged in the world and people around him, some things have gotten more overwhelming. Things that once seemed mastered we're at a point of relearning.

Alex has shown tremendous courage throughout his illness and cancer treatments. Often, with that trademark smile on his face.

Alex - Day +6 post auto stem cell transplant.
January 6, 2016

Alex - Six Months post auto stem cell transplant.
June 27, 2016

There's Alex's serious face, though. The one he wears when he's calling up all the courage he needs to do what needs to be done. That might be cancer treatment, but it might also be getting a haircut or going to a movie. Lately, the anxiety has crept back into Alex's daily life more and more. It varies quite a bit from day to day and can be very unpredictable. It turns out that anxiety is not uncommon for cancer patients, and it also isn't uncommon for it to continue after things appear to be getting better. The fear of relapse can be overwhelming. The after effects of chemotherapy and treatments have a lasting effect on fatigue and anxiety.

I know it's frustrating for Alex, and it's frustrating for his dad and me as we try to support him. It feels like we've lost so much ground in what he'd been able to do. He has to relearn how to go places and do things he had gotten so good at. And we never know which days will be good ones and which will be difficult ones.

His birthday was one example. He recently turned 26. We had a low-key party at his sister's house. John's sister's family was there, and our family. It was a fairly small group, and all people he's very close to and comfortable with. We had one of his favorite meals (pizza) and watched a movie. He was anxious and overwhelmed. It wasn't the party I imagined, and I don't know how much fun he had.

This weekend is another example. I planned a short family trip. John, Alex, Tucker (our dog). and I went to Door County for three days. The resort we stayed at had small, pet-friendly cottages so we had our own space. We were going to keep things low-key, go for walks and drives (Alex likes to go for drives) and watch movies. Alex was anxious on the drive, and anxious when we arrived. We got out a little bit, but not much. We got take-out food because I knew going to a restaurant would be too overwhelming.

I'll spare you the blow-by-blow, but it was simply too much for Alex. We arrived in the afternoon on a Friday, and by Saturday morning he was ready to go home. We got some take out food for lunch, took a leisurely (well, leisurely for us) drive to see the sights and went back to the resort. He tried to take a nap, but got up and starting asking to go home.

This wasn't something he had to do (like cancer treatment) so we felt he should have say in what happened. From a capacity-building perspective, we were successful. He stayed away from home at someplace new (although he's been do Door County lots of times, this resort was new to us) and did a few things. We ended up deciding to cut the trip short and came home Saturday evening.

Today, at home, in familiar surroundings his anxiety has lessened greatly. The smile is back.

It was the right decision to come home. I think it was still the right decision to go, because it helped to build capacity, even though it didn't turn out like I hoped it would. But, in the end, it was the right decision to come home early.

The three days of relaxing and fun I imagined ended up to be 30 anxious hours. We planned a respite from cancer, which it was, but it did not end up to be a respite from anxiety and autism. I'm sad that it was so difficult for Alex, but I'm proud of him for how he handled things. He handled his anxiety well, and he was able to make his wishes known and have some control over his life.

Hopefully, we rebuilt some capacity and maybe the next time we try it will go better.

In the meantime, he's got a couple more days to hang out with us at home before he goes back to his house, so we still have some family time with no cancer treatments. Our main goal was to get to spend some time together, and that can happen anywhere that Alex wants to be.