Cancer Changes Everything

You never know how strong you are,until being strong is your only choice.

Cancer changes everything.

We've been on this cancer "journey" for over a year now.  Some of you have been with us since the beginning, but this post is for those of you just joining us.

Cancer changes everything.  Imagine your child with cancer.  Imagine your special needs child with cancer.

Alex has cancer.

He also has autism.  He is mostly nonverbal, but he has ways of expressing himself and he also uses a communication app.  He's charming and funny and kind and a tease.  His developmental disability permeates every aspect of his life.

But I need to back up.

In December of 2015, Alex was nearing his second anniversary of living in his group home.  He was doing great.  He had wonderful roommates and amazing caregivers.  It had been a long road to get him to that place.  He had a part time job, and staff at the group home made sure that the residents were all busy and active in the community.  We regular heard from friends that they had bumped into Alex and his roommates out in the community - at the park, at the movies, at high school sporting events, shopping, and more.

Alex, his roommates, and his caregiver meeting Jordy Nelson.

Summer 2015

Alex had settled in to his group home and we saw him regularly.  He lives only about 25 minutes away from us.  His dad, John, and I were figuring out how to manage the "empty nest."  When you have a child with a developmental disability like Alex's, and they move out, it's a huge impact on day to day life.  When Alex's sister went away to college, we were already used to her being gone much of the time.  She was a busy high school student who was active at school, at her part time job, and in her activities.  Alex needed round the clock supervision, so in some ways it's like having a toddler move out of your home.  John and I had a huge amount of brand new free time.

With that new found freedom, we had to find hobbies for our spare time.  John had been a long time recreational pilot.  I decided to get my pilot's license.  We tried to go flying every weekend.  Our daughter was working at her dream job, was engaged, and we were planning a wedding.  We could see Alex as often as we liked, which was usually once or twice a week, and we could see him gaining independence and confidence.  Life was pretty great for our whole family.

Then around Christmas time, I thought Alex's neck looked different; it looked fuller somehow.  I couldn't quite put my finger on it, but something didn't seem right.  His appetite was off, and he was tired.  He was losing weight.

 Alex at our house, December 2015.

His neck is noticeably fuller than in the fall.

In January, my concern was growing.  I felt his neck, and found a lump below his chin.  We had just changed insurance companies through work, and my long time primary care physician was not in my new plan.  I took Alex to urgent care.  The doctor there referred us to an ENT.  It took a couple of weeks of wrangling with insurance and scheduling surgery, but at the beginning of February, the mass was removed from under his chin.  They took out a mass the size of a golf ball.  At this point, we were still hoping it was benign.

Alex post surgery.  A tumour the size of a golf ball was removed from under his chin.  His neck was getting larger and larger.  He was reminding me of Winston Churchill.

The sent the mass in for a biopsy, as they do with anything they cut out of your body.  I took a week off from school (I teach fourth grade) to care for Alex at home.  We tried not to worry, but Alex seemed to be getting sicker, and he developed a cough and was having difficulty breathing.

Right before the surgery, the Physician's Assistant discovered enlarged lymph nodes on his collar bones.  That was new.  She told the surgeon, but neither one said if that was significant.

During this time, I stayed off the internet and tried not to worry.  When we still didn't have biopsy results six days later, I couldn't contain myself anymore.  The night before we were to go for a follow up appointment with the surgeon, I googled "enlarged lymph nodes on collar bone."  Boy, was that a mistake.  Every hit came back "cancer."

I spent a sleepless night.  We went to the doctor's office, and they confirmed what I had learned from my online search.  Alex had Hodgkin's Lymphoma.

I was numb.  I couldn't breath.  I couldn't think. 

Cancer.

And then immediately, my mind raced.  How on earth would Alex handle cancer treatment?  When he was young, getting a hair cut or going to the dentist was a huge ordeal.  How on earth could this possibly work?

As soon as we left the doctor's office, I knew I had to call Alex's sister.  That was an awful phone call.  Getting the news was terrible.  Calling and telling my daughter her brother had cancer when she was at work, more than 2,000 miles away, was excruciating.  

Her immediate response was, "I want to come home."  She hung up the phone, made a plane reservation, and talked to her boss.  Ten hours later we were picking her up at the airport in Milwaukee.

The next few months were a whirlwind.  We began our Hodgkin's boot camp.  We had a lot to learn and no time to learn it.

I created a Facebook group called "Alex's Army" so I could update friends and family on Alex's illness and treatment.  I started this blog.  Writing helped me process what was happening to Alex and to our family.

I learned that Alex has touched many people.  Alex's Army provided a great deal of support.

Our doctor told us Alex had the "good cancer."  Hodgkin's has a very high cure rate.

We started chemo.  Every other week Alex had six hours of chemo.  John and I went to every treatment.  John's sister, Allison, was at almost every one.  We found out that the cough Alex had developed was because he had a large tumour over his airway, and that the size of his airway was reduced to half the diameter it should be.

He was in danger of his airway collapsing.  Chemo had to start immediately.

It took almost six weeks from the time I found the lump until Alex started treatment.

We developed a routine.  Chemo every other week.  Alex continued to live in his group home.  John and I continued to work.  We tried to keep life as "normal" as possible.  Jessica came home every few weeks.

Alex handled the treatments like a rock star.  He endured countless needle sticks.  He did everything we asked, and then some.

His side effects were minimal.  Some nausea.  Lots of fatigue.

But he has an enduring smile and resiliency.

He's taught us all how face adversity.  He has shown tremendous trust.

Within a week of that first treatment, the cough was gone.  His neck started to go down.

After six weeks, we had another PET scan.  The tumours were all shrinking.  We were sure the treatment was working.

Alex was going to be a cancer survivor.  He was going to be a success story.

In June, his sister got married.  Alex had chemo on Thursday (we worked on wedding place cards at chemo), and a pre-wedding barbecue on Friday and the wedding on Saturday.

Alex beamed throughout the whole wedding.  He was amazing.

Wedding Photo by Jenna Kutcher

One of the many aspects of this illness that has been difficult, is the fact that Alex has very limited communication.  He can ask for pizza, or indicate that he doesn't feel well, or say he has to go to the bathroom.  He can't verbalize how he's feeling about this whole process.  What are his fears?  Is he afraid of dying?  Does he understand the entire breadth of what he's facing?

We don't know for sure.  I can tell you that after 25 years as his parents, we feel like we read him pretty well.  We believe he understands what is happening to him.  But we don't "know" anything for sure.

Our job is to be his voice, his advocate, and his support.  We have been at every treatment.  One or both of us has slept in the hospital every night with him.

At the end of July, Alex had his last chemo treatment.  He'd had 12 rounds of chemo over the course of six months. On your last day of chemo, you get to ring a bell.  Alex rang that bell with gusto.  Then, on our way out of chemo, all of the caregivers and residents of the three group homes that are part of the group that runs Alex's group home were waiting to surprise us.

Alex, Mom, Dad, Jessica (sister) and Rusty (brother in law), roommates and caregivers celebrating Alex's final day of chemo.

We spent August confident in our belief that Alex had kicked cancer.  We could see him getting stronger.

We had his follow up PET at the end of August.  We went to his doctor a week later, at the beginning of September.

I knew as soon as he walked into the room that the news was not good.  Alex had "mixed results."  His tumours were smaller, but there were two spots in his chest that were still active, and one new node.

We were devastated.  

We had gone to Froedtert in April for a second opinion.  The lymphoma specialist said we were in great hands with our oncologist in Appleton.  Stay the course, and don't miss a treatment and don't change the schedule is what he told us.  If all goes well, he said, you'll never have to see me again.

All didn't go well, and we were back in his office.

We learned that the next step was a stem cell transplant.  Alex would have more chemo - inpatient this time - to prep for the transplant.  I would need to take a leave of absence from work in order to focus on Alex's treatment.  We would have to relocate to Milwaukee for anywhere from four to six weeks.

Alex had three rounds of "ICE" chemo at St. E's hospital in Appleton, WI.

After three rounds of "ICE," Alex had to have his own stem cells collected.  That process took a week - four days of shots to stimulate stem cell production, and three days to harvest enough cells.

Alex had a line coming out his neck, attached to a centrifuge, to collect the stem cells.

In December 2015, a year after I first noticed something was wrong, Alex was admitted to Froedtert Hospital for an autologous stem cell transplant.  First, he had to have another chemo, more aggressive than either of the first two.  After six days of chemo, which would kill all of the bone marrow in his body, his own stem cells would be reintroduced.  All of this took place over Christmas and New Year's.

Our family on Christmas Eve 2015 at Froedtert Hospital.

Throughout this whole process, Alex's autism was at the forefront of our thoughts and planning.  It impacted everything we did.  We spent a great deal of time talking to the transplant coordinator, doctor, and nurses, about how to help Alex.  John and I took turns staying overnight in the hospital.  Since we live more than 100 miles away, we had a temporary apartment a mile from the hospital.

Alex was released from the hospital after 18 days; 11 days after the actual transplant.  We never imagined he would only be in the hospital for only 18 days.  We were thrilled.  In that 18 days, one or both of us was with Alex around the clock except for maybe a total of 10 hours.  John and I went to the cafeteria for lunch and dinner daily; about 20 minutes per meal.  College friends took us out to dinner one evening.  Other than that, we were there.

Alex's stem cells, about to be put back into his body.

Alex walked every single day of his hospitalization.

We had the support of our friends and family.  Our singing group, "Relativity" all came to visit and we went caroling through the halls.

I can't believe how much we've learned, how much we've changed, in the past year.  Alex has continually amazed us.  He did an amazing job in the hospital.  He was released much sooner than expected, and after our first clinic visit a few days later, we even got permission to come all the way home.  We packed up that apartment in record time!

Alex and Jessica the night Alex got back home from Milwaukee.  Look at those smiles!

What's next?  We're waiting again.  Next week Alex has a PET scan.  His sixth scan in a year.  (Each scan has been done under sedation because he's not able to be still enough for the procedure.  Just one of many ways his autism impacts his treatment plan.)

What will 2016 bring?  We've survived 2015.  And we're certainly hoping for good news next week.  It's likely that, even if he gets a negative result (negative = remission) on his PET, he will have more treatment.  There's a new chemo drug specifically for post-stem-cell transplant patients.  At this point, we're expecting up to a year of continued treatment.  That's our best case scenario.  If he's not in remission yet, or if he relapses, then we'll have to figure that out.

We wondered how Alex could balance cancer and autism.  We learned that Alex can handle just about anything that has been thrown at him.  We've all learned how strong we can be.

Cancer has dominated our year.  Jessica and Rusty's wedding was the bright spot of the year, by far.

Here's to hoping for a better 2016.