Thursday, January 28, 2016

Tick, Tock, Tick

Years ago, I bought Alex a battery operated wall clock for his room.  One night when he was having trouble sleeping, I was in his room with him, trying to calm him and sooth him back to sleep.  I heard the tick, tock, tick of that clock.  I couldn't believe how loud it seemed when the house was so still.

Not a great room accent for someone with hyper-sensitive hearing.

Years earlier, we had realized that he was waking at 2 am due to the sound of the water softener in the basement, two floors below his bedroom.  It was purposely set to regenerate at 2 am to not bother anyone in the household and to not interrupt water usage.  What it did interrupt was Alex's sleep.  We reset it to regenerate at midnight.  At midnight, he was in a deep enough sleep to not be awakened by the sound.  By two am, it was a different story.

I took the clock off the wall.  Perhaps it was that tick, tock, tick that was interrupting his sleep.

I can hear that sound in my head, the incessant ticking of that clock.

It's also the sound of waiting.  Alex's scan is a week away.  His sixth, sedated PET scan in the past year.  This scan will tell us if he's in remission.  It will tell us if the stem cell transplant worked.

I promised myself I wouldn't dwell on that scan, or on thinking about the "what ifs" during the three weeks at home between the transplant and the scan.

I'm actually doing fairly well, but the thought is never too far from my mind.

"Scanxiety" is what cancer patients call it.  Living from one scan to the next, always worrying what news it will bring.

The first scan revealed a mass over his airway that threatened to cut off his air supply completely; an imminently life-threatening mass.

Subsequent scans showed improvement, but always something left behind.

When we went in for the scan in August, the one after twelve cycles of chemo were completed, we were confident.  I remember telling the techs we'd see them again in six months.  I remember being sure we would get positive results.

Instead, there were still two active nodes within that initial large area.  There was also a new node in his neck that lit up.

Instead of remission, Alex had another surgery, more chemo (two new types, each more aggressive than the last), and a stem cell transplant.

His recovery from the transplant is nothing short of amazing.  He battles fatigue, but that's about it. His anxiety is more of a concern some days than others.  He lost all of his hair - facial hair, whiskers, body hair, eyelashes and eyebrows.  That caused discomfort and anxiety.  It was all just starting to come back and in one day it all went away again.

I try to gauge how he's feeling, not just physically but mentally and emotionally, day by day.  We're starting to get out a bit.  The Wisconsin January weather has made that difficult, and his immune system is still compromised so we have to be careful.  We've been mall walking, and he's been doing well.  Yesterday, we walked in to the mall and he had a big smile on his face.  But in short order, it was clearly too much for him.  We abandoned the plan and went back home.

He may not have the language to tell me how he's doing, but he certainly has his ways.

The scan is in six days.  We see his oncologist that same day.  In the past, we had the scans done nearer to our home, and results took several days to a week.  This time, we'll travel to Milwaukee where the lymphoma specialist has direct and immediate access to the digital images.  He said he'll give us preliminary results that same day.  We won't have the radiologist report, but the oncologist and his PA are confident they can interpret what they need to directly from the images.

We're hoping for one word:  remission.  I'm afraid to get my hopes up.  We've been disappointed time and again this past year.

That clock keeps ticking, resounding in my head.

Wednesday, January 27, 2016

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. 


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.

Sunday, January 24, 2016

Growing Up in a Small Town - A Trip to the Dime Store

Penny Candy, Halloween Costumes, the Toy Store - all of these are fond memories of growing up in a small town in the 1960's and 70's.  I can remember walking the half mile from my house to the Dime Store with my older siblings, and later with neighborhood friends or with my cousin.  I'm not sure how old I was when I went without the supervision of my older siblings, but I am quite sure it was much younger than I would let my own children walk around town today.

King's Variety in Kaukauna, WI - also known as the "Dime Store" was a focal point for shopping in our small town.  Children could go and shop independently and find all kinds of treasures for very little money.

One of my favorite spots was the penny candy display.  You could fill a small, brown paper bag with a great deal of candy for just ten cents.  Now, you can find "vintage candy" for sale on the internet, or kiosks or candy stores in the mall trying to replicate that penny candy feel.

I remember buying licorice, tootsie rolls, tootsie pops and the like.  Can you remember candy cigarettes?  The idea seems preposterous now, but back then children could buy candy cigarettes to emulate their parents smoking.

When I was really little, I seem to remember the toy department being located downstairs.  At some point, it moved up to the second story.  I remember walking upstairs to what seemed like an amazing toy land.  I'm sure if I were able to revisit it today, it would seem very simple compared to today's retail spaces.  In the 1960's in my small town, it may as well have been FAO Schwartz.

I remember checkers sets, paper dolls, models, board games, dolls, coloring books, crayons, Duncan Yo Yo's and more.

Who can forget Barrel of Monkeys?

And of course there were the toys that have long since been banned because of how dangerous they were.  Do you remember Clackers?  Banned in 1985, Clackers were large, acrylic balls on a long string that you would try to get to clack together by moving your hand up and down.  There were also the infamous "Jarts" or Lawn Darts - banned in 1988. What could possibly go wrong with a projectile  with a sharp point that you throw into the air?

I also remember buying my Halloween Costumes at King's Variety.  In the 1960s and 70s, costumes were made from some synthetic (flammable) material with masks (with too small eye holes) held on to your face by a rubber band.

I can remember wearing a Casper the Friendly Ghost costume at some point in my childhood.

Today's children are much more sophisticated and the toys and games that they can shop for are certainly beyond anything we ever imagined.  Still, I have very fond memories of going on my own and shopping with my own money.  Going to the Dime Store was definitely an important part of my childhood. 

Saturday, January 16, 2016

525,600 Minutes

525,600 minutes, 525,000 moments so dear. 
525,600 minutes - how do you measure, measure a year? 
In daylights, in sunsets, in midnights, in cups of coffee. 
In inches, in miles, in laughter, in strife. 
In 525,600 minutes - how do you measure a year in the life?
How about love? How about love? How about love? 
Measure in love. 
Seasons of love.
~"Rent" written by Jonathon Larson

Certainly the past 525,600 minutes of my family's life - and I choose the singular "life" because I'm thinking of the collective life of my family - have been among the most significant we've ever experienced.

New Jobs (Jess and Rusty)
Cross Country Move (including newlyweds living with wife's parents for two months)
Old Jobs (managing ours through a tumultuous year)
Death of a Parent
Significant Illness of another Parent
Sudden death of a friend
Sudden death of yet another Parent
New Puppy

I love the musical RENT.  I love musicals, and theatre, and books, and story telling.  This year, we have quite a story to tell.

Alex's favorite musical (mine and John's too, for that matter) is Wicked.  He's seen it three times.  Once, he got to meet the actress who played Glinda and she took us on a backstage tour.

Alex's sister, Jessica, and John's cousin, Lynn, sang "For Good," from Wicked for Alex's high school graduation.

I could associate a musical theatre song with every major life event or emotion I've experienced.

Which brings me back to 525,600 minutes from RENT.

It's just a year since I found the lump under Alex's chin.  The enlarged lymph node that it would take nearly four more weeks to learn was cancerous.

In the past year, I've learned more about cancer than I ever wanted to know.  I've learned a whole new language. I know now that the various seemingly random symptoms Alex was experiencing weren't random, they were classic Hodgkin's Lymphoma symptoms.

I've learned that my family can be shaken, but not broken.  I've learned that we all can be as strong as we need to be.

But this past year wasn't just about cancer.  Cancer was simply the eye of the storm.

At first, we tried to integrate Alex's cancer treatments into the rest of our lives.  John and I continued to work, Alex continued to live at his group home.  We tried to "keep as normal of a routine as possible," as his doctors suggested.

Jessica flew home every few weeks.

We continued to plan her wedding to Rusty.

In April, John's mom passed away have almost four years of living with the ever increasing effects of Alzheimer's.  She had lost her ability to communicate, and we have no idea if she recognized us in her final months.  John and Allison sat vigil at the end, and John and I were with her as she drew her last breath. Allison and Tom walked in moments later, followed by LaVerne's sister, brother, and her best friend.

We had to schedule her funeral around Alex's chemo.  John and I missed a week of work, going from funeral planning to funeral to chemo.

A few days before the wedding, a family friend died in a tragic plane crash, leaving behind a wife and two young sons.  They were supposed to be at Jessica and Rusty's wedding.  Newly widowed, our friend came to the pre-wedding BBQ to give Jessica and Rusty their congratulations and to tell them to cherish every moment.

Jessica and Rusty's wedding happened on a chemo week.  But by then, chemo had become a family event. We spent the day filling out table cards, acting silly, and laughing in Alex's treatment room.  

Jessica and Rusty were married on a picture perfect golden Saturday in June. Alex stunned us all at the wedding festivities.  He was so happy for his sister, he just beamed.  That weekend could not have been more perfect.

By June, we were looking forward to the end of Alex's chemo.  His final chemo treatment was at the end of July.  Jessica came home for AirVenture and for Alex's last chemo.  He rang the gong, and he was met with a crowd of friends as we left the oncology office.

During the happy month we were sure Alex had beaten cancer, Jessica received an unexpected job offer in Wisconsin.  She and Rusty had just moved into a new home in California, and Rusty had just started a new job.  The offer was a wonderful professional opportunity, and they decided that they were ready to leave California.  So, less than two months after their wedding, they left their jobs, took on new jobs, and moved across the country.

During that same month, health issues that my mother had been dealing with for a couple of years came to a stressful and difficult climax.  She tried to maintain her independence as long as she could.  My brother and I had been trying to help her for quite some time, but ultimately she resisted our advice and made decisions that were not in her own best interest.  Her healthcare power of attorney had to be activated, and I had to figure out new living arrangements for her.

I got my mom situated and Alex had a follow up PET scan just as I went back to school for the year.

A week later, we went to the doctor for the results of the scan.  We were certain we would receive good news.  We did not.

We had to go to a lymphoma specialist and begin the process of more chemo and preparation for a stem cell transplant.  The treatment plan would require us to move temporarily to an apartment near the hospital.  We would take turns sleeping in Alex's hospital room.  I had taken an extended leave of absence from teaching that begin in mid-October.  John kept working, but he made arrangements to work remotely and take unpaid time off while Alex was in the hospital.  At first, we planned that i would go alone, and John would stay home and work.  It became apparent that we needed to stay together.

As we were dealing with this news, and trying to figure out the treatment plan and what to do about work, Jessica and Rusty arrived with their dog.  They moved in.  It was great to have them here.  They were very easy houseguests to have, but it was clear that Jessica now felt like a visitor in her childhood home.  They both started new jobs, with Rusty working from our home.  They sold their California home and bought a new home near Jessica's work.  They moved in the week and a half we had in between Alex's stem cell collection and going to the hospital for his transplant.

As soon as they settled in to their new home, the took our dog for us when we went to the hospital with Alex.  Our Christmas and New Year's were spent in the hospital.

The day after Christmas, Jessica and Rusty picked up their new puppy.  A few days before they left to pick up the puppy, their dog came down with kennel cough.  They picked up the puppy, but they had to isolate the puppy from the other two dogs for a week.  They kept the two dogs at our house and the puppy at their house with one of them at each place.  They were all back under one roof in time for New Year's Eve. They had a party at their house to celebrate New Year's.

As New Year's approached, we all talked about how glad we would be to see 2015 go and that we were hoping for better things in 2016.

Shortly before midnight, I got a text from Jessica.  John was sleeping at the hospital, and I was staying at our temporary apartment.  (We took turns staying at the hospital with Alex.)  She called me.  Rusty's dad had died suddenly and unexpectedly.  At that point, they didn't know the cause.

It was another blow in a long line of too many blows in the last year.  Rusty left for Denver, and Jessica followed a few days later.

Alex's transplant went extremely well.  The doctors were thrilled, and he ended up being released from the hospital only 11 days post transplant.  We went to the temporary apartment, and the doctor released us to come all the way home only 14 days post transplant.

As he continues to recover at home, I reflect on this past year.  

Clearly, Jessica and Rusty's wedding and the unexpected move to Wisconsin are the highlights; happy events that our family desperately needed.  They begin their lives together in a new home, with new jobs, a new puppy, and lives full of potential.  My daughter now lives a 35 minute drive away, after almost nine years of living at least 1,500 miles away.

Alex's cancer has proven to be formidable, but so has Alex.  His treatment has been tough, but he is unwavering.  He is an amazing example of resilience.  He will have a PET scan in a couple of weeks to see if his treatment worked.  We expect that there will still be treatment in the coming year.  He hasn't kicked cancer yet, but he's still here, and he's still fighting.

We've suffered terrible losses, saying good-bye to people we loved very much.  We move forward, taking them with us, remembering the lessons learned from those relationships.

What will the next 525,600 minutes bring?

Friday, January 8, 2016

Cancer as a Chronic Illness

Cancer survivor.

Death from cancer.

I used to think that a cancer diagnosis meant one of those two outcomes.

I thought a cancer diagnosis led to binary results.

I'm realizing that there is a whole lot of middle ground; once again, life presents "shades of grey."

I consider myself to be someone who looks at the grey areas of life - that seldom are issues ones with black and white answers.  I knew people who lived with cancer for a long period of time, but until it happened to my son, I admit I had not fully embraced the reality that a cancer diagnosis can mean a long, drawn out treatment plan or living with uncertainty.

Once again, life is here to teach me a lesson that I didn't particularly want to learn, but needed to learn nonetheless.

When Alex's cancer was diagnosed, my mind was racing and I wanted to know what needed to be done to "fix" this.  I had enough friends in my life who had cancer, had undergone surgery, and went into remission.  I don't mean to belittle their experience or the difficulty of it, but I perceived that this could be a finite period of time with a positive outcome.

I feel like I was painfully naive, and I admit I'm embarrassed that I did not fully realize what so many others already knew.  A cancer diagnosis can lead to a long, protracted, uncertain future.  Months and years of treatment.  Years of living scan to scan, wondering what every ache and pain might actually mean.

Today Alex is almost a year into treatment.

Primary treatment was not successful; we're in the midst of more aggressive treatment, and there is more follow up treatment to come.  He probably has a year of treatment ahead, and that's if things go well.

I have to adjust to the bigger picture.

I have to learn, we have to learn as a family and as a support to Alex, how to "live" with cancer.

Alex's cancer is not going to be wrapped up in a neat bow.  It is going to be the sword of Damocles hanging over our head.

We have to live.

Don't get me wrong, I am desperately hoping for a cure.  And it is still possible, but statistically it is not a sure thing.

But Alex is not a statistic, and neither is our family.

If he survives Hodgkin's, he may eventually die from secondary cancers or illnesses caused by the treatment.

Right now, life is on hold because of the intensive treatment Alex is getting.  In a few more weeks, though, we'll go home.  We have to remember to live, and not simply wait for "when this is over." We can't miss out on today.

When Alex was diagnosed with autism as a toddler, I knew we didn't want autism to define him or our family.

Now the same if true of cancer.  Clearly, cancer is going to have a role in our lives for longer than we anticipated.  There are practical aspects to deal with.  But somehow we have to find a way to not let it dominate everything.  In between treatments, we need to focus on other things.  There were a few months in the middle of this year that I think we did a good job with this.  We had Jessica's wedding to focus on.  I think we lived in the moment, but I still had this underlying idea of "when this is over."

Today I have to live with what I know.  Alex is recovering beautifully from his stem cell transplant. We've had 18 days in the hospital to strengthen our family bond and to support him on his path to getting well.  We'll have more freedom in our temporary apartment, and in a few weeks we'll be home.  I look forward to going back to work.  Alex will return to his group home, his roommates, caregivers, and part time job.

Apparently, cancer will continue to be a part of the equation for 2016.  A cure would be the best gift of 2016, but no matter what, we're all here today and that makes it a good day.

Thursday, January 7, 2016

Care for the Caregivers

"Remember to take care of yourself."

Throughout Alex's hospital stay, friends, family, and hospital staff voice their concern for John's and my well-being.  It is much appreciated, but it's just not that simple.

I'm not trying to be a martyr when I say that Alex can't step away from his cancer, so it doesn't feel right for us to.

The nurses on the unit are awesome.  They are great with Alex.  But the truth is, the hospital is not equipped at this point to provide the level of support that Alex needs.  We're also willing to concede that he may not need quite as much as we feel he does.  This unit is a busy place, and they are not staffed in such a way to provide someone at Alex's bedside 24/7.  John and I also would not choose to be anywhere else.

But the real truth of the matter is that this isn't much different than parenting Alex has always been.

Obviously, he has a life threatening illness and we're in a hospital. But Alex has always needed intensive supervision.

You know when your kids reach that point where you feel comfortable letting them get up on Saturday morning, getting their own cereal, and watching tv so you can sleep in for awhile?

We don't.

When Alex is awake, someone in the household must also be awake.

Feeling tired on a Saturday afternoon, or fighting a bad cold, and you just want to take a snooze? Sorry; no such luck.

You know when you reach that point where the kids can let themselves in the house when the bus gets home until you get home from work?

We don't.

Alex has never been home alone, nor can he be.  We can't run to the store for a gallon of milk and leave him home alone.  Even now, I would barely be able to go out and snow-blow the driveway if Alex were awake in the house alone.

You know how weird it is when your child develops their own social life, and friends come and pick them up for an afternoon or an overnight?

We don't.

Alex has never had plans that we didn't arrange.  He didn't go to parties, or sledding with friends, or to the mall on a weekend and leave us home alone.

You know when you finally reached the point where you didn't need to arrange or pay a sitter when you wanted to go out, or had an evening meeting or work commitment?

We don't.

Until Alex moved out, we still had to arrange care for him any time we went out or were not home when he was.  We had to arrange care to go visit Jessica when she was in Boston at school, or when we visited her in California.  Traveling with Alex is something we have always done, but it has its own challenges and everything must go according to his needs, so we couldn't easily just bring him along every time we visited Jess.

When Alex was small, we had to put his doorknob on his bedroom door backwards so he couldn't get out in the middle of the night.  There was a time when we worried he would go right out the front door.  "Wandering" by individuals with autism has become quite prominent in the local news.  It is a very real problem, and Alex has wondered away from school once and home four times.  Twice when he wandered from home he went to a neighbor's house (in both cases, he walked right in - luckily the neighbors in each case knew him) and twice we had to call the police.  The last wandering episode occurred when he was only about 12 years old.

This year, Alex has had sutures three times.  He needs awake supervision to keep from pulling the sutures out.  The catheter that was used to collect his stem cells had to be removed each night and replaced the following day for a total of three days because of the likelihood he would pull it out if we were not able to watch him constantly.  Since we still require sleep, that wasn't going to happen.

In many ways, parenting a child with a developmental disability is like have a perpetual toddler in the house.  That level of intensity never goes away.

When Alex moved into his group home three years ago, we achieved a freedom we had not experienced since before Jessica was born.  We had experienced high intensity parenting for 24 years straight.

I don't tell you this to make you feel sorry for us.  We don't feel sorry for ourselves.  We've had a great life, and we love our son.  We have seen him grow and develop and we appreciate his accomplishments in a way that is only possible when you live through the journey.

I tell you because our lives are different from most people's.  Our parenting experience is different from most people's.

And I tell you because what we're experiencing as caregivers is nothing new.  This is what we've done for 25 years.  I could happily do without worrying if Alex would live or die.  And I'm ready to get out of the hospital and be home and be surrounded by our own things.  But this kind of being joined-at-the-hip experience, that part is just everyday life for us.

Throughout Alex's childhood, we were able to find great caregivers to help us out.  John and I made sure to get occasional date nights.  We were able to travel from time to time (more often when he got older).  We were able to work and be involved in community groups. We found a balance that worked for us.

In the past year that Alex was sick, he continued to live in his group home.  Without them, I would have been off work for a whole year, instead of just the last three months.  Alex has become more independent living away from us, and we know he is well cared for with 24/7 awake care.  He has overnight awake staff, which is more than he has at home (we haven't figure out how not to sleep).

Today is day 17 in the hospital.  John and I eat breakfast in Alex's room with him, and we go down to the cafeteria for lunch and dinner.  The nurses watch him when we go.  We're usually only gone for about 20 minutes at a time, but it's enough.  John and I take turns sleeping here; the other one sleeps in our temporary apartment.  One night, we went out to dinner with college friends.  We were gone for a couple of hours.  Other than that, either one of us or both of us has pretty much been at Alex's side for the past 17 days.

Honestly, you couldn't keep us away.  When it's your child, where else would you want to be?  And if your child is an adult, but a vulnerable adult, what else would you do?  We're not being heroic, we're just being Alex's parents.  Our original plan was for me to stay at the hospital alone with Alex, and John to stay at home and work.  John couldn't stay away.  He arranged to work remotely, and he's also taken time off.  Neither one of us were willing to not be here.  It's not that we don't think the other one could handle things alone - we know they could - but we need to be here, too.  For Alex, but for ourselves.  It also is a tremendous help to each of us to do this together.  We've always been partners.

Being away and wondering how he is doing is far worse than being at this side.  This past year has taught us more than ever what we're made of, and it has brought our family closer.  Thirty-Five years ago John and I promised to love each other for better or worse, richer or poorer, in sickness and in health.  I guess for us, those aren't just marriage vows, they're family vows.

We're probably not always the best at taking care of ourselves.  I don't really know any other way to do things.  I do know that when I look back on this year, I won't have any regrets.

Right now, I wouldn't choose to be anywhere else.

Monday, January 4, 2016

Learning Curve

Seven new transplant patients checked in today.

The BMT unit at our hospital has twelve beds.  When we moved in 14 days ago, the unit was full.  Over the course of the last 14 days, nine of those people left.  Two new people checked in a few days ago.  Right now, I think there are only one or two patients who have been there longer than Alex.

Seeing those seven new patients moving in brings into sharp relief how much we've learned in the past 14 days, and how much Alex has already gone through.

Like most significant events, these 14 days have gone by quickly and slowly, all at the same time.

We've developed a routine - when to shower, when to walk, when to eat.  Twenty-three laps around the unit equal one mile. Every day we've been there we've walked between a mile and two and a half miles. Some walks are only two or three laps. Alex is good at routine. Sometimes he grumbles, but once he gets going he sort of sprints down the hallway.

I think about how those new patients must be feeling today. I know how we felt. There was a lot of fear and apprehension. Alex's anxiety was at high levels the day we moved in. We unpacked and put Christmas stockings on the door.

Within a few days, we had developed a routine and Alex was settling in.

We've learned a new language in the last year, full of new vocabulary, new abbreviations, and new acronyms.

After six cycles of two treatments each of ABVD, Alex's Hodgkin's Lymphoma was not in remission so it was called Primary Refractory HL (Hodgkin's Lymphoma).  The next course of treatment was three treatments of ICE chemo in a 21 day cycle, followed by BEAM chemo and an "auto SCT."  (Autologous Stem Cell Transplant.)

Some transplants are with your own cells (auto) and some with donor cells (allogenic or allo),  In talking with someone with Hodgkin's, or another blood cancer, you talk in this code.  "Are you having an auto or an allo?"  "What chemo did you get?"

They measure calories and fluids in, and whatever comes out.  When you have cancer, all things hinge on how much you eat, drink, pee, and poop.  Nothing is sacred.  I never thought about where the cancer goes when you have chemo.  Turns out, you have to excrete it out.  Just like a newborn baby, everyone is concerned with those four basic bodily functions.

Alex is past the six days of chemo.  He is past his transplant day - his "re-birthday."

Now, he is doing the amazing work of building a brand new immune system.  He's very, very tired.  But he still gets up and walks every day.  His input is good as well as is output.

They count all of his calories.  He's been doing great.  He has days that he's consumed 3,000 - 3,500 calories.  He walks about two miles a day, but spends the rest of the day in bed.  And he's still lost about four pounds.  Imagine how hard his body is working if it's burning that many calories.

We had visitors on day +4.  It was his first day that his counts reached the low they call "Neutropenic."  His immune system has been destroyed by the chemo.  He should have been sleeping that whole day, but he was so excited to see the family that came to visit.  We sang and had a pizza party.

Today is day +7.  He's still Neutropenic.  The doctors are thrilled with his progress.  He has a great attitude.  All of his numbers are textbook, they tell us.  A few more days, and the numbers should start to come up.  In about a week, we'll get to go to our temporary apartment with Alex.  We'll spend another couple of weeks in that apartment, going in for regular blood tests until his counts reach a level we get released to go home.

Everyone's experience is different, and many patients have terrible side effects from the chemo and from being Neutropenic.  Alex isn't done yet, and will still have some rough days ahead.  So far, though, he's made things look pretty easy.

How I feel today is so very different than I felt the day we moved in.  I look at all the new patients and their families moving in, and I realize how far we've come.