Reflection

The first time I heard Cat Stevens' The Cat's in the Cradle my mom was playing it on a 45 rpm record on my dad's old console stereo. She was preparing for some presentation she was giving; I don't remember why or for whom but she was going to play that record as the intro to her talk. In 1974, when that song was released, that theme of change was definitely something my mom and our family was going through. She was working full time and going to college after years as a full time stay-at-home mom. Her older children were in high school and college and beginning to make their own paths. I was the baby, still in elementary school. When I hear that song as an adult, I remember how I felt listening to is as a child and think about how my own perspective has shifted through the years.

During this pandemic year, I've had plenty of time to reflect on my life, and life in general. For a long time I compartmentalized my life as "before autism" and "after autism" and identified the date of Alex's diagnosis as the time when our lives changed. I gave that moment in time much more power than it deserved. Although it was certainly a defining moment, I know now that a life is filled with a multitude of defining moments, and it is our reactions and choices that shape who we are. 

Now I look at that time as one more experience that has built our family collectively and each of us individually. The adjustment was hard, years in the making. Many moments of Alex's childhood were very hard. Along the autism spectrum, Alex's version of autism brings him many challenges. Alex also has his own unique way of interacting with and viewing the world that make him a wonderful person.

I used to worry about all the ways I fell short as a mother for both Alex and Jessica. I spent a lot of years chasing the elusive magic wand that would make life easier for Alex. While I truly felt he didn't need to be "fixed," I did think that if I didn't find the "right" therapy or if I didn't help him learn to talk that would mean I had failed as a mother. When I look back now, it is much easier to see what we did well, and to enjoy and focus on the happy times of his childhood and our family life.

Since Alex's autism diagnosis, life has thrown many more challenges our way; many of them much harder than that diagnosis. Alex's autism is only one piece of a very colorful tapestry that continues to grow. Experiencing loss, illness, and death has definitely grown our perspective over time. Our own experience, hopefully, helps us grow empathy for the experiences of others. Life is messy - at times difficult and painful. It is also joyful and precious.

Facebook reminded me of this photo today. It was taken when Alex was maybe three years old. It's one of my very favorite photos of Alex and his dad. Now Alex is a grown man and John has salt and pepper hair and when I look at them I see all of our shared history.

It really is all those life experiences that make us who we are. Those seasons of change that we go through and the relationships we forge during those shared experiences. Alex is a grown man and I couldn't be more proud of him. He has a full life, thanks to the support of many but also thanks to his own efforts and attitude. He survived cancer, two solid years of multiple, arduous treatments. He's handling this pandemic better than I am. He's a good person with a happy, healthy life surrounded by people he loves and who love him. How lucky am I to be his mother.

Autism, a Pandemic, and the Holidays

 I put the Christmas Tree up today - one of my favorite rituals. It's like a three dimensional scrapbook - each ornament carries the memories of the Christmas when it was added to my collection. I started with a plan in 1984 - the year John and I married. I've added a few ornaments a year ever since. Jessica and Alex have their own collections. Jessica's collection is now a part of her family Christmas Tree. Alex's collection continues to be part of ours. Putting the tree up gives me a sense of tradition, continuity, and normalcy in an extremely abnormal year. 2020. The year of the global pandemic: Covid-19.

The first ornament from 1984.

Our tree - 2020

You'd think that during a pandemic, with lots of time on my hands since I retired from teaching in June, that I would do nothing but write. I have time. I have thoughts (oh, so very many thoughts - a pandemic ia a terrible thing for an over thinker like myself). Every time I try to write, I get stuck. I get ideas in the shower, while walking the dogs, while baking and doing dishes. I honestly can't stop the thoughts from consuming me. Sometimes, they even seem like thoughts worth sharing. But, like trying to grasp smoke, they disappear when I try to give them form.

I've been thinking about how the pandemic has impacted Alex and how, yet again, Alex shows me what resilience is. My fear back in March was how Alex would react if we couldn't see him regularly, if our visits changed. We had never in his life gone more than two weeks without seeing him. In mid-March when schools in Wisconsin sent everyone home, Alex's group home also locked down. It would be more than two months before we would see Alex in person again. We learned to have awkward video chats with the help of his caregivers. We've learned to have one-sided conversations with Alex over the years, but the video chat was a whole new kind of awkward. It was comforting to see him and hear his voice.

After resuming in person visitation, that all stopped again in the fall when Covid cases in Wisconsin began to really escalate. As the scientists learned more about the virus, outside visits appeared to be safer than inside ones, so we were able to have some outside visits with Alex. He was not a fan at first. The visits were short and we couldn't really "do" much. We sat in the swing, which ended up to be quite awkward. Then we started taking walks around the block. Not his favorite activity, but it was better than simply sitting there.

It's just after Thanksgiving, and we were able to have a home visit with Alex. We took lots of precautions. Alex sees no one but his caregivers, who are masked. John works from home and we have very minimal contact with the outside world, outside of errands and seeing Jessica's family. Our "bubble" as they like to talk about is extremely small. I'm not sure if we'll be able to see him at Christmas. 

Like most everyone else, I've been thinking a lot about the holidays. It's so easy to get caught up in my feelings about what the pandemic is changing about the holidays. I'm feeling the pandemic fatigue we keep reading about. I miss my friends and family. I miss restaurants, traveling, and going to the theatre. I have cooked more meals in 2020 than I've ever cooked in one year before. The list of things that i didn't get to do in 2020 is long. The grief I feel over all of this is real. 

When Alex was young, the holidays were often complicated and difficult. He was easily overwhelmed and frustrated by the changes in schedule. We had to rethink how we did things and holidays tended to look different than we imagined them. Sometimes that meant they were more difficult, but mostly it just meant they were just different.

My father died on December 23, 1994. That year Christmas looked very different for our extended family, for obvious reasons. Dad had cancer and it became apparent that he didn't have much time left, so we. had an impromptu celebration with family members who lived close enough to drop everything and make the trip to my parents' house.

Alex and Grandpa Herb - Christmas 1994
My dad died about a week later.

Alex's stem cell transplant was December 28, 2015. Our Christmas that year was spent in the hospital. For the most part, it was Alex, John, and me for the 21 days Alex spent in the hospital and the time after in our temporary apartment. We had some visitors that helped us celebrate. Although that Christmas was difficult, I have warm memories of going through that time together. We truly did not know if that would be Alex's last Christmas and yet he's here, healthy and thriving, five years later.

Living through a pandemic is not an experience I ever thought about. When all of this started nine months ago, I never imagined that we would still be dealing with this so many months later. Alex has been amazingly resilient, yet again. His routines and his world keep changing, yet his attitude remains positive and strong. He can't tell me, but I often think that perhaps he isn't subject to the expectations that often cause me disappointment. I don't know if that's part of his autism or just part of his personality, but he seems much more able to roll with things than I am. 

Christmas will look different. I don't know if I'll get to see Alex. I do know that I won't be doing many of the things I'm used to doing. I also know that I've had to deal with grief and sacrifices and heartache before and will again. I'm hopeful that there is a light at the end of the tunnel when the Covid-19 vaccine is approved. I'm hoping that 2021 is a much better year than 2020. Until then, I'll do my best to remember the Christmases past, be okay with the present, and look forward to the future.

Summer for Special Needs

I'm about to share a secret with you about summer for special needs kiddos and their parents - it's hard.

Summer conjures up beautiful pictures of carefree days in the yard, at the park, at the beach; playing baseball or taking summer school classes. Sleep in, stay up late, picnics, cook outs, suspending the rules in favor of those special summer moments.

The reality of summer with a special needs child is something different; at least it was for mine. In today's terms, Alex has an autism spectrum disorder, adhd, and generalized anxiety disorder. Let's go back to the 1990's and early 2000's. Autism was much less prevalent (4 in 10,000 was the CDC statistic in 1992) and unknown by the majority of people we encountered.  We were pioneers of a sort, paving the way for Alex wherever he went - there wasn't Miracle League baseball or Sensory Sundays at local museums or any of the things you can readily find today.

When I think back on Alex's childhood, I think about the things that we did that worked, and I also think about the young mom that I was. I wish I could tell that mom to trust herself and to be kind to herself.

I'd like to share a few of the things that I learned so that if this isn't your world you can maybe develop a little empathy for what families like ours go through but also, if it is your world, to tell you that I see you, I see your struggles and your triumphs.

Listen to your gut:

There are many more resources out there today than there were when we were raising Alex, so I didn't always have a lot to go on. The first three summers after Alex's diagnosis I took grad classes on working with kids with autism. I read a few books. Mostly, though, I tried to figure out how to live my life. I think that becoming knowledgeable and informed is crucial, but at the end of the day you have to synthesize all of that information for yourself and your child - you still have to trust your gut. I became a detective and the mystery I was trying to solve was Alex. One of the most profound things I learned early on was that all behaviors have communicative intent and when you're trying to replace a negative behavior and you don't figure out what that behavior is communicating, your child will replace it with something else, likely worse. I looked at everything Alex did and tried to figure out what he was telling me. Alex has major communication issues, but over time we've learned to communicate with each other using AAC, some spoken language, and developing shortcuts and an understanding that I can't quite articulate. When Alex was young, I had so much to learn. I learned to tell when Alex was overwhelmed, when he was happy, when he was frustrated. I had to gauge when I could push him to try new things, and when to back off. It was a lot of trial and error. I had to trust what I thought was right for Alex.

Routine is Your Friend:

Alex craved routine. I understood how important routine was when I realized that he used it as a tool to help manage his world. When you don't have language, which Alex didn't, you don't have that tool to help you understand and negotiate what's happening in your day. Routine helps take the place of that. I may not understand what you say to me, but I know what's supposed to happen next. The sameness of routine is comforting as well. Alex qualified for extended school year, which was a huge help. For at least part of the summer he still followed his normal morning routine, got on a bus, and went to school for a few hours. Throughout the summer, he got up and went to bed at the same time. That was not my design, it was what he did. Sitting out by the campfire at our friends' cottage with everyone, including all the other kids, our friends would ask, "where's Alex?" He was in bed because it was 9:00. It didn't matter to him that it wasn't dark yet and he could stay up by the fire. Being away from home was different enough for him - keeping his bedtime worked better for him. It also meant that we were the only ones awake at 6:00 am while everyone else was sleeping in. We'd take an early morning walk or an early swim. He didn't sleep in, and he couldn't be up by himself. (He still can't, at the age of 29. If Alex is awake, someone must be awake with him.) Alex still is a creature of routine. We just got back from taking him on vacation, and he was up every morning at 6:00 and in bed by 9:00.

Manage Expectations:

I think this is huge, not just for special needs parents, but for all parents. We just got back from a family trip to Disney (Alex loves it, and they make great accommodations) and I could give this advice to lots of parents there. Stop thinking about what your summer or your vacation "should" be. You have to learn to be realistic and brutally honest. I think I learned to manage expectations early on, but I often did so with angst. My husband is much better at living in the moment, so he was often the gentle (and sometimes not so gentle) nudge I needed.  I had to constantly think about how much Alex could do. If my goal was to try to develop a new skill or provide a new challenge, I had to think about the incremental steps to get there. When he was young, taking him to the movies on Saturday meant that I couldn't make any plans for Sunday because he would need that whole day to recover. The energy and effort he had to expend to go to a movie theatre was so great he couldn't do any more. Going to a family function meant that we had to have an escape plan - Alex could handle a few hours at best, but that was it. We had to plan ahead, would we all leave, would one of us take him and the other stay with Jess; we always had back ups. We had to learn that we couldn't do all the things, but if we were realistic about what we tried, we had a much better chance for success and for everyone to have a good time.

Divide and Conquer:

Alex and his sister had very different needs. Honestly, I get the fact that any time you have more than one child it all becomes a huge balancing act. We tried to balance Alex's needs with the family. One strategy that worked for us was to divide and conquer when it came to time with our kids. I think this has become more of a common thing today than it was when Jess and Alex were young, or maybe I just didn't know about it back then. I guess I pictured that having two children nineteen months apart meant that we would be able to do everything together. Clearly, that was unrealistic. We learned to designate what was family time, what was Alex time, and what was Jessica time. Jess would have opportunities on her own with one of us while the other was with Alex. Sometimes it meant that we got a caregiver for Alex so we could both do things with Jess. We started taking her away for a weekend, just the three of us, when she was six. We would visit museums slowly, instead of at what we had lovingly dubbed "Alex pace." We ate at restaurants that she wanted to go to that we knew he would not be able to do. She got to choose everything. It was a special time for her and for us, but it also made it easier to enjoy the things we did the four of us. When the four of use went to museum together, we knew that we had to follow Alex's lead.

Trust Yourself and Ask for Help: 

This one is more of a "do as I say and not as I do." I was not good at asking for help (I'm still not). Despite that, friends came forward in many ways, large and small. Looking back, I also think that they would have liked to help more if they had known what to do. Letting them know what Alex needed, what we needed, would have been helpful to them. One year, my brother and sister in law planned their son's birthday party at a pool, in part because they knew Alex would like it. We went to a friend's cottage with a group every summer for about ten years. Over time, certain activities got planned or adjusted in ways that accommodated Alex, without anything ever being said. I remember the year that they bought a new tube for pulling behind the boat that worked well for Alex, "I saw it and thought Alex would like it," my friend said. Alex friendly foods appeared at gatherings. Let people help you. They want to. The ones that won't aren't worth your time anyway.

There's No Such Thing as "Free Time," so Make a Plan:

Alex's needs meant no free time for his dad or me. That's not a complaint, just a reality that you don't experience if you don't have a child with Alex's needs. That freedom that happens when your child can get up on their own on Saturday morning and get a bowl of cereal while you sleep in - it never happened in our household. That freedom when your child can go over to play at a neighbor's house on their own - that never happened either. Alex has never had a moment in his life that wasn't orchestrated and supervised by someone else. In order to be able to do that fully, you have to find a way to make time for yourself. Alex's few hours of summer school for part of the summer meant I could drive Jessica to and from her own summer school classes, or clean the house, or do a few errands. When dad got home from work, it might be that I took a walk, or hid in the bedroom and read a book. I played with the kids while dad worked in the shop for a few hours. We got caregivers regularly and had date nights. It didn't really take a lot, but we had to have something.

No one has a perfect summer:

At the end of summer, I would inevitable think of all the things that we didn't do or didn't get to. There were moments when I gave in to the thought that I had blown the whole thing. Then I would remind myself that no one has a perfect summer. Thankfully, this was before social media was there to tell me that all of my friends were having a perfect summer or to tell me all the ways I was messing up as a parent. By the time the end of summer rolled around, we were all ready to get back to our routine. The kids and I were all ready for the new school year to begin.

I could let myself dwell on the fact that we couldn't go to Fourth of July fireworks because Alex wouldn't stay away that late and couldn't manage the waiting required when you get to the part two hours before fireworks start, or the summer classes he couldn't take, or the activities we left early because he was starting to have a melt down. Or I could think about the trips to swim in Lake Michigan, or day trips to my aunt's cottage, or getting ice cream at Dick's Drive In; trips to the pool, doing art projects at home, and watching endless hours of Disney's Sing Along Songs. Choose the focus on the memories of what you did do.

Have Fun:

You know what? Despite the challenges, actually probably because of them, I look back on my children's childhood fondly. I would do it all again, even with some of the crazy things that happened. We had fun. It's popular now to talk about the importance of "making memories." We didn't talk about it like that back in the day, we just did stuff. We have lots of great memories and family stories. I didn't get to be the mom lounging poolside with a book because I had to be right with Alex, but I did get to be the mom that went down the waterslide with him a million times while he was squealing with delight. Jess and I still laugh about the time we went to Door County for the day and every candy shop we went in, Alex pointed to white chocolate almond bark in the display case and we told him no, because we "knew" he wouldn't like it. After about three shops we finally gave in, and he ate it all, this kid who never tries new foods and had never, to our knowledge, even seen white chocolate almond bark before.

Be Kind to Yourself:

It has taken me until Alex's adulthood to allow myself to think that I did a good job as a mom when he was young. I doubted myself all the time. I was strong enough to not chase every fad out there (when it comes to autism - there are many). I looked for the science behind the things I tried and I trusted what intuitively made sense. I did the things that I knew I should, I just questioned myself every time. I can now say that not only did I do my best, I did a good job not just for Alex but for both my kids. I wish I could have let myself think that 25 years ago. It would have saved me a lot of sleepless nights.

Alex's loud vocalizations as we sat at the restaurant were evidence of how much he has learned to regulate himself, and also how much effort it takes for him to do things others might take for granted. I apologized to our server. "We were just at the Lion King at the PAC. He was quiet for two and a half hours, and he just can't be quiet anymore." She smiled warmly and laughed. "it's loud in here, no worries."

People often ask me how we know how Alex is feeling or what he's thinking. It's a fair question, one with an answer that is both complicated and uncomplicated. He doesn't speak, so it takes detective work on our part. At the same time, how do you know how your infant is feeling? How do you know your partner is upset or pleased with you without them saying a word? There's an old adage, "being unable to speak is not the same as having nothing to say." We're learned to pay attention.

Which brings me to the Lion King. A day like this was many years in the making. It is the culmination of years of work helping Alex with his many sensory issues and with self-regulation. Many therapists and teachers have helped him, and us, to learn how his brain and body work and what he needs. It involved intention and practice.

More than 10 years ago, I'm not sure exactly when, Alex attended his first traveling Broadway production. The show was Wicked, and he'd listened to the cast album dozens of times. This was the show we felt would be perfect to capture his attention, and we felt he was old enough and had acquired the skills to attend a performance. This was years before special sensory performances for people with autism on Broadway, and years before the kind of publicity that exists today to help the public be aware of individuals like Alex.

There is nothing spontaneous about taking Alex to the theatre, or about trying a brand new experience. That was even more true 10 or 20 years ago. We prepared for Wicked by continuing to listen to the cast album and talking about the upcoming trip to the theatre. We drove by the theatre. I contacted the theatre to find out about handicapped seating. (Accommodations for physical handicaps were much better understood than for so-called "invisible" disabilities.) I created a social story that we practiced for about a week before the event. A social story is basically a script, with text and photos, that helps someone rehearse for an event. The story described what Alex would be doing and contained photos from the show and photos of the theatre. We also learned over the years that preparation had to be early enough before an event, but not too early. Starting too early - more than a few days or a week - created anxiety as well. We got box seats. The movable chairs that are perfect if you are in a wheelchair so the chair can be removed are also perfect for Alex. If he rocks a bit, there is no one immediately around him that would be bothered. John and I can physically draw our chairs nearer to Alex to provide some comfort in proximity. We had an escape route to the bathroom planned. We had a bottle of water. (This was when they were just beginning to allow water in the theatre and before wine, snacks, and drinks of all kinds went in with people.) We brought noise -cancelling headphones, because Alex's hearing is so sensitive he can hear everything he needs to while wearing them. We were also prepared for the fact that all of this preparation might fail, and Alex would be unable to stay for the performance, that he would need to leave mid-way.  We tried to predict every aspect of that day for him.

That first trip to Wicked was a rousing success. Alex loved the show. John and I loved watching Alex love the show. It was the beginning of many trips to the theatre. Alex has seen Wicked multiple times, and one of the times through he even got to meet the actress who was playing Glinda and she gave him a backstage tour.

More than10 years of preparation went into our attendance at Lion King. Our entire day is orchestrated to help him have the internal resources he needs to enjoy the show. We brought him home for the weekend, so that we could have a quiet day leading up to the performance. Going to the PAC is now familiar to him, so there is no longer the need for a social story. We had been talking about the show for awhile, though, and the way he repeated "Lion King" indicated he understood what we were talking about. We watched a few YouTube videos of scenes from the musical just before leaving home for the theatre.

Now when we got to a show we have an established routine, which helps Alex (and all of us, I suppose) immensely. Once again, I experienced the joy of the performance, and the joy of watching Alex enjoy something that I love so much. He did an amazing job sitting still without rocking, and watching without vocalizing - two things he does to self-regulate. He watched intently, taking everything in. There is no doubt that he was enjoying everything about the show.

It was all quiet easy, really, or seemed easy. It was after the show when Alex showed us just how much effort it takes for him to do something like this. Once the performance ended and we got to the car, the vocalizations started. One way he self-regulates is by making vocalizations. If he is tired, sick, or anxious, they can be quite loud. He did not seem agitated in any way - his body language was not agitated - but he had to vocalize. He had to do some rocking as well. We went for food after the show, to a familiar restaurant where we knew he would be comfortable because going out to eat in itself is something he enjoys but that requires a lot of effort on his part. The contrast made it so clear to us that he used all the effort he could for the performance. It showed us how much he's learned and how much control he's gained.

At that point, he had done all he could. We apologized to the server, but at that point we knew Alex was going to have to do what he needed to do. Food helped (there was surely a bit of "hangry" going on, or as we call it with Alex, "hanxious") and within a couple of hours he was able to relax. The amount of time it takes him to regulate after a big event has decreased tremendously over the years as well. When he was little, going to a movie took a day or more to recover from. Now, going to the theatre took a couple of hours to re-regulate everything.

It really was a wonderful day. It made me glad that we've invested the effort over the years to give Alex these experiences, and it made me appreciate how far he's come. I can't wait to take him to his next show.

Incredulous

Scanxiety: the gut-wrenching fear cancer patients (and families) experience in anticipation of a cancer scan and/or scan results. After 11 PET scans between February 2015 and August 2017, this 11 month interval was the longest time between scans since Alex's Hodgkin's Lymphoma diagnosis. As the date for the scan approached, it became increasingly difficult for me to quell the fear growing in the pit of my stomach.

All of Alex's scans are done under sedation since there is no other way to guarantee that he is completely still for the test. A radioactive tracer is injected and he must lie still for 50 minutes; during this time, John (dad), Jessica (sister), and I sit with him to ensure that he is quiet and still. (Excessive movement could cause a false reading on the scan since muscle movement and cancer both attract the tracer.)

It's a long morning, which begins when my alarm goes off at 4:30 am and culminates with an appointment with Alex's medical team at 12:40. Alex has to fast because of the sedation, and this time he seems more annoyed at not being able to drink than he is about not being able to eat. He asks for Mountain Dew and is wholly unimpressed with being told he can't have anything. (Alex may be minimally verbal, but he can say Mountain Dew and he can certainly make his displeasure clear.)

There's a lot of waiting, since they require him to report to the PAR (patient arrival and recovery) area a full two hours before the scan. We start the day at the cancer center lab, and they put in an IV and draw labs. Since they've already put in the IV, there is nothing for the nurse at the PAR to do except update and confirm his health history.

We're repeat customers in the PET scan area, and the tech introduces himself, "My name is Donald, we've met before." Alex leaves an impression on people and they always remember him.

After the scan, it's back to the PAR. It's about a half mile walk through the bowels of the hospital to and from the PAR to the PET scan area. The walk feels good since it's a day of so much sitting and waiting. Alex is on the gurney, pushed by a transport specialist, with  his entourage in tow. Alex has to be observed for an hour because of the sedation, and they over crackers and white soda. I bring a peanut butter sandwich because by this time Alex hasn't eaten in almost 20 hours and we've learned that he doesn't have any nausea following sedation. He is, however, ravenous. Jess and I go to the cafeteria to grab sandwiches to bring back to Alex's waiting area, and they have chicken tenders, so I grab some. I'm not sure the nurse entirely approved of me giving him the chicken, but we've been through this numerous times before. We also have a short window of time before the next appointment and we don't need to add to everyone's anxiety by being hungry.

Alex gets released from the PAR and we use a wheelchair (because of the sedation, although he comes out of it beautifully) to take him to his next appointment. We get to Grace Clinic early, but it is packed - standing room only. I'm glad that Alex has a wheelchair to sit in. It's almost 20 minutes after his scheduled appointment time before we're called back. Another excruciatingly slow passage of time.

The tech is finishing taking vitals and entering them into the computer when the doctor and PA walk in. They start with small talk and asking about Alex's birthday trip to Disney. We talk about Alex's love of roller coasters and I'm watching their faces, the doctor and the PA, and trying to discern body language. After the brief Disney conversation, the doctor says, "Well, the scan is clear."

He said some more words, something about no cancer, but I can't remember exactly what he said. I was so prepared for bad news, that I couldn't respond. The doctor spoke, and then there was silence. Maybe it was a few seconds, maybe it was a full minute. I don't know. No one spoke. We were all just trying to take it all in.

Then the doctor said no scan for another year.

I guess the best word to describe how I felt, and still feel, is incredulous.

This remission has lasted an unexpected 18 months. When Alex was diagnosed with Hodgkin's, we were told "at least he has the 'good' cancer." While it's true that 80% are cured with frontline chemo, there is no "good" cancer. For those, like Alex, in the unlucky 20%, things aren't so rosy. Alex has had 8 treatments, including a stem cell transplant. He had 10 months of remission after the transplant, and when he relapsed we were told that the options were no longer curative. There were treatments available, but they would only buy time. When he started Nivo (Nivolumab, an immunotherapy, PD1 inhibitor) we were hoping he would be on it for two years and that there would be something new when that drug no longer worked. He developed severe pneumonitis after only four doses and had to stop the drug. We were devastated and then, unexpectedly, a PET scan showed he was in complete remission. Five months later, another clean scan. Now, 11 months after that, another clean scan. Almost 18 months of remission.

Alex's medical team at Froedtert Hospital (MCW) - Dr. Mehdi Hamadani and Katie Zellner.

The doctor said that the longer Alex stays in remission, the more the odds improve. There is no certainty - only math. I struggle between feelings of hope and despair - wondering what will happen. That is a pointless road to travel down. Instead, it's time to just get busy living.

Here's to you, Alex. You are a brave man. You've fought hard and, for now, you've won. Celebrate.

Embrace the Boring

Today is Alex's "Cancervesary:" three years since his diagnosis. Happily, there is nothing cancer-related about today. Alex is at his house, doing whatever their normal Sunday things are, and John and I are at home, each of us getting caught up on some things for work and deciding what the rest of our day looks like. Beautifully, wonderfully mundane stuff.

We had appointments at Froedtert this past week - a six month check with Alex's Lymphoma Specialist. We drove two hours, waited an hour for a blood draw, all for maybe five minutes with the medical team. No news doesn't take long to deliver. We'll go back in the summer for a PET scan and to see the doctor again. In between, there is a spring appointment with Alex's local oncologist. They're just monitoring at this point. We know what to watch for as well. Right now, though, Alex is doing really well.

Life continues to be busy, but the things that occupy us are not life or death. The battery died and needed to be replaced on my Subaru, I always feel behind on grading papers for school, the constant battle to stay caught up on laundry ("always clean, seldom folded" could by my motto),  getting paperwork ready for tax time - whatever your list is, ours is probably similar. It's all just day to day stuff, and we are loving it.

There just really isn't a lot to report right now, and I'm okay with that.

Alex dressed up to go to the Night to Shine Prom with his housemates.

Celebratory frozen custard after Alex's oncology appointment. Kopp's Frozen Custard, Milwaukee, WI

It's Complicated

We've been enjoying our visits with Alex, and all of us have been readjusting to life with Alex out on his own. Clearly, going through his cancer treatment changed the landscape of everything, and so much of our time with Alex revolved around his treatment. It's an understatement to say that it's nice to just be able to have dinner with him or have him home for an uneventful weekend.

Fazoli's continues to be a favorite, so it is a frequent dinner destination when we have dinner together. I love looking at his face - seeing him look healthy and at ease.

Alex is doing so well right now, and I love to be able to tell people when they ask that he is feeling great. Yet, always on the tip of my tongue is the qualifier, "for now."


Remission = Happy, right?

Mostly, yes. It's not that I'm ungrateful or unappreciative of where we are at now; I am. It's just that when your hand has been slammed in that car door time after time, you wince a little every time you open it.

I understand it when people say that "no one knows what tomorrow will bring," and I agree with them. However, Alex has been given a bit more information than most about his future. A year ago a very well respected and knowledgeable specialist told us that Alex would be in treatment for his cancer for the rest of his life. We also didn't discontinue his immunotherapy because it stopped working, we didn't even discontinue it because it worked. We had to discontinue it because of the damage it was doing to his lungs.

And yet, here he is, cancer free for over eight months now. "Durable remission" is a term that has been used. The doctors just don't know how long this will last. There isn't enough data on his treatment to tell us what will happen. There are study patients who have been in remission from this drug for two years, but they continued to receive the drug the whole time. I don't know if there are even numbers on how long someone stayed in remission after stopping the drug. I purposely haven't tried to find out.

So when you ask me how Alex is, and my response is "He's doing great" but I add on that "for now," I'm not trying to be bleak, or difficult. I'm terrified. If I don't say, "for now" out loud, I'm still thinking it in my head. I'm forcing myself to make plans for the future - to think about life a year or five years from now. I'm allowing myself to imagine a life a year or five years from now with Alex in it. I'm pushing away the fear that such dreams are foolishly optimistic. Because I don't know what tomorrow will bring. I do know sadly, from experience, that we are capable of dropping everything and dealing with whatever we need to in the moment. I also know that dwelling on it now robs me of this time when he's well. I know I can't squander it. Knowing a thing and managing a thing are not exactly the same, though, are they?

Alex is doing great. He looks healthy. He has energy. He's active with his house. His anxiety is generally low, and his good days and bad days appear to revolve more around his regular rhythms than anything cancer related. He is feeling better than he has since before he had cancer. We're back in a routine of visits. He spent several days at home over Thanksgiving, and will be with us again at Christmas. This year, our Christmas will be fairly quiet, which is a welcome change from the past two years. No hospitals, no treatments, just family time, baking, and Christmas movies. I love, love, love Christmas and am very content for it to be a quiet one.

Yes, Alex is doing great, and so are we. Thanks for asking.