Courage

“Courage is not the absence of fear, but rather the assessment that something else is more important than fear.”

― Franklin D. Roosevelt

I've been thinking a lot about courage lately.  I love the quote from FDR, "Courage is not the absence of fear, but rather the assessment that somethings else is more important than fear." To say that the past few months have tested our family would be a vast understatement.  At the same time, I've never doubted our ability to do what needs to be done.  That isn't hubris on my part, it's extreme pragmatism.  What is the alternative?  Alex can't get well without us.  And we've been tested before.  If I've learned anything in the last thirty years, it's that whatever is thrown at us, John and I will be able to face it together.

But I'd like to put this idea of cancer and autism in some context.   Imagine getting a cancer diagnosis and you understand what you're being told, but you are unable to ask any questions, express your fears, or talk about your feelings or concerns in any way.  You are completely at the mercy of those around you to make your decisions for you, interpret what you're going through, and attempt to meet your needs.  Maybe they guess right, but maybe they guess wrong.  We operate under the assumption, as we always have, that Alex understands everything we say.  And we do our best to interpret and guess what he wants and needs.  But we don't know.  We never know for sure.  Are we explaining things to him in enough detail?  Too much?  Too little?  Are there questions he has that we aren't asking for him?  There is tremendous responsibility in trying to be Alex's voice.

Doctors and medical procedures have always been a source of anxiety for Alex.  I remember when he was a toddler and we'd have to go to the doctor for routine illnesses.  It was quite a challenge to keep him calm and occupied in the waiting room.  We would play, sing songs, and try to distract him.  And he was like the Tasmanian Devil in terms of his energy level.  Just keeping track of him was a full time job.

As he got older, it was easier to keep him corralled, but his anxiety  increased.  A trip to the doctor resulted in a full-blown panic attack.  We didn't realize what they were at first, but we learned.  His pulse would race, his breathing was shallow, and he'd break out in a heat rash.

Other than routine illnesses (and he has always been a pretty healthy guy), his only doctor's visits were related to his autism.  That meant sitting in a room with everyone talking about him and picking apart all of his behaviors.  Let me tell you, Alex is not a fan.  He has learned to tolerate it, but he struggles.  There is lots of rocking and vocalizing during a doctor's appointment, even with his psych who has been his doctor for ten years.

John and I have always worried about a major medical issue with Alex.  How would we know if he were sick?  How would he handle treatment?  Someone we know would get appendicitis and we'd think, "How would we know?  Would Alex be able to tell us?"  It was a worry that was always in the background.

He had a few minor things over the years.  He had wisdom teeth out under general anesthesia and a benign bone tumor removed from his knee.  Both were out-patient procedures and Alex did well.  It was just enough, we told ourselves, so that Alex had some idea of how hospitals work. Maybe then, if something major happened, he wouldn't have to be so frightened.
 
But cancer?  I never, ever let my mind go there.  Who does?  The day I found the lump in Alex's neck, my heart sank.  I knew it couldn't be good, but I tried to hold the panic at bay.  Don't panic until there's something to panic about.  Over the next four weeks, we kept telling ourselves that.

Surgery was the first hurdle.  How would he handle surgery?  How would he handle the pain, the IV, the stay in the hospital?   He was amazing with everything.  Every step of the way, he did what needed to be done.  Anything that was within his control, he did.  And more, really.  The two biggest components of Alex's autism are his communication disorder and anxiety.  All of the medications he takes are to regulate mood and help him deal with anxiety.  The only thing he was unable to do prior to surgery was the needle biopsy of his neck.  But really, would you be able to lay perfectly still while  a stranger stuck a huge needled into your neck, where you couldn't see what they were doing?

The surgery went beautifully.  They got all of the tumor.  Alex was a champ.  We just had to wait for the results of the biopsy.  At first, we were able to convince ourselves the news would be good and we'd put this challenge behind us.  It turns out, we weren't going to be that lucky.

The day they said, "cancer," was terrifying for the obvious reasons, but also because of his autism.  How will his disability affect his treatment?  How will the medical professionals be able to adapt to and understand his needs?  Will he be able to get the treatment he needs?  There were so many questions, and no answers. Try and Google "cancer" and "autism."  You'll find nothing.  We'd have to blaze this trail ourselves.

In discussing and planning Alex's treatment, his doctor has been fantastic.  Each decision that has to be made follows the protocols and guidelines that have been established for Hodgkins Lymphoma, but then we have to take Alex's special needs into account.  We feel that Alex's doctors have done a great job listening to us.

Chemotherapy is the treatment for Hodgkins.  We weren't sure in the beginning how Alex would do, but we felt that this was something that Alex would be able to manage.  PET scans were necessary.  We told the doctor Alex would have to be sedated.  That's not common, but it could be done.  

Radiation is sometimes part of the treatment plan, especially with "bulky" disease, which Alex has.  In learning about radiation, it just doesn't seem like this is something Alex will be able to do.  He can't be sedated (the treatment is daily for 30 days) and he can't be still enough for the 30 minute treatment for it to be safe.  If he moves, his heart, lungs, or neck would be irradiated.  In consultation with the lymphoma specialist, he said he wouldn't recommend radiation anyway, because of the risks to Alex later in life.  He said this would be his recommendation, even if Alex would be able to stay perfectly still for the radiation treatments.

Now, we have five chemo treatments completed.  We have more information from a second PET scan.  We know that the treatment is working.  And we also know what Alex is capable of.  Alex exemplifies FDR's definition of courage.  None of this has been easy for Alex, but he does it anyway. 

In the past three months, he's undergone surgery, two sedated PET scans, weekly blood draws, numerous doctor's appointments and consultations, and five chemotherapy treatments.  I think he's been stuck by more needles than I have in my entire life.

When he walks into the oncology office, he's anxious.  It's an interesting mix, actually.  He's less anxious than he was at first because now he knows the people, the environment, and the routine.  He now has a clear understanding of exactly what will happen to him.  At the same time, there is clear anxiety because he now has a clear understanding of exactly what will happen to him.  He has to get poked to have blood drawn, and he has to get poked for a peripheral IV.  (We haven't done the port and at this point don't plan to because of the risk that Alex will pick at the port and damage it or cause injury to himself.) 

It's amazing to watch him get the IV.  It usually takes two or three sticks to get the right spot.  Alex twitches prior and pulls his arm away, but as soon as Ben is really trying to put the needle in, Alex doesn't move a muscle.  He is absolutely still, and watches the whole procedure intently.  Alex needs to be very still, and to not pick at the IV, for the whole four to five hours of chemo because the medications that we are pumping directly into his veins could ulcerate his skin if they leak out of the vein.

Alex also knows that for about three days after chemo he'll be tired beyond belief.  I'm sure that is part of his anxiety as we begin the treatment.  He's very patient all afternoon, until about the last hour.  That's when we all start getting antsy.  Last time it took a little extra anti-anxiety medication to help him through.  Alex started vocalizing rather loudly at one point, and the doctor peeked his head in the door, concerned.  "Is he okay?" We assured the doctor that Alex would be okay, but that he was just stressed.

Make no mistake, this is hard for Alex.  It isn't that he doesn't understand or doesn't mind.  Personally, I think it's proof that he does understand and he knows what is required of him.  Just like the quote from FDR, Alex has "made the assessment that something is more important than fear."  I admire Alex's courage.

I like to think that trust is a big part of how Alex is making it through of all this.  When he was first diagnosed with autism, my greatest fear was that he wouldn't be able to love us or to know that we loved him.  Everything we did in terms of working with his disability was driven by the idea that we wanted him to understand love, and to know that he is loved.  I didn't care if he could tie his shoes by himself (he can't, by the way, and it's no big deal) but I wanted him to know that his family loved him and would be there for him.  Alex has to have a lot of trust right now - trust in his family, trust in the doctors and nurses who are helping us, trust in his caregivers and housemates.  We all have to trust each other.

And then there's resiliency.  The smile that we see so often.  His positive attitude is there, every day; even on his hardest days.  That, to me, is courage.

Now, when I think of courage, I think of Alex.  I think we all could learn a lot from him.

 



 

Spaghetti Night

Spaghetti Night has always been a big night in our house.  It's one of Alex's favorite meals. 

Along with autism comes a lot of food issues.  This part of autism was not nearly as well understood when Alex was a toddler as it is today.  Many (most?) individuals with autism have a restricted palette of foods that they eat.  The issues may revolved around texture, color, smell or other concerns.  It has always been difficult for Alex to try new foods.  But spaghetti has always been a favorite.

Now spaghetti night has changed a bit.  It's part of our new "chemo routine."  We pick Alex up from his house on Wednesday, the night before chemo.  We have spaghetti for dinner.  I know that I can get him to eat well.  It's sort of like carb-loading the night before a marathon.  I also know that he isn't going to eat much for the two or three days after chemo, so I want to get him off to a good start.

So, we have spaghetti.  Last night, spaghetti night was the night of LaVerne's funeral.  I guess I was overtired and a bit distracted.  I was wondering why the water wouldn't boil when I discovered that I never turned the burner on under the pasta pot.  Well, I guess that's a problem.  Then I burned two batches of garlic bread under the broiler.  John managed to salvage part of the second batch and I gave up at that point.  The spaghetti turned out well, though.  Alex ate well, and we all crashed in front of reruns of Big Bang Theory.

The morning of chemo is French toast.  It's a way to get an egg in Alex for the protein.  He eats well in the morning the day of chemo.  By lunch time, he may or may not be able to eat.  Last time, he didn't eat all day.  The time before, he ate lunch while getting his infusion and snacked throughout the day.  We'll see what today brings.

John took over breakfast years ago.  He doesn't have much of an interest in cooking, but he has become the breakfast king.  So dad's French toast is the order of the day.  The meals also provide comfort and routine and a bit of normalcy in what is our current life.

It's a nice way to start the day.  And every chemo treatment is one step closer to "cured."

Moments

Have you seen the wall art on Pinterest where people have a display of clocks, set to the time of their wedding and the births of their children?  It's a sweet way to commemorate special moments.  I don't have a display like that on my wall, but in my head and my heart I've had certain moments imprinted for years.

For many years I've thought of my life as "before autism" and "after autism."  The date of Alex's autism diagnosis is a point in time where everything changed.  I somehow thought it was the most important or significant event until, suddenly, it wasn't.  The day of Alex's cancer diagnosis changed that.  Another moment in time that changed everything.

Since then, since "the cancer day," I've done a lot of reflecting upon the idea of "moments."  I've been thinking about how moments shape us and shape our lives.  And how, more than the moments, it's really our choices we make when faced with those moments that define us.

Perhaps the first in a chain of moments was the moment I walked into the first debate team meeting of the year when I was a sophomore in high school.  It was my second year in debate, so I walked in with at least a small degree of confidence.  In addition to all of our returning team members, were some new kids who wanted to join the team.  That was the day that I met John.  He walked in and he appeared much more outgoing and confident than I felt.  He wore a camera around his neck, and faux leather pants.  (In 1978 those were actually pretty cool.)  I didn't know that day that this was a moment that would change my life, yet I can remember it pretty clearly.  I think of it whenever I walk by Mr. Rutter's social studies room, which hasn't been Mr. Rutter's social studies room in decades, in a school that isn't even a high school any more.  (When we take our fourth graders to tour the middle school every spring, I point out the classroom as we walk by.  "That's where I met Mr. Forster for the first time."  The girls all go, "Awww...."

And of course I remember our wedding and the births of my children, but there are other everyday moments that stick out.

I can remember sitting in Jessica's bedroom, in our tiny home on Wilson Street, rocking her to sleep and singing Dan Fogelberg's "Another Auld Lang Syne."  She was only a few weeks old. I vividly remember feeling like I needed to capture that moment and hold it in time.  It's like the character Cam Janssen in the kids' mystery series.  Cam says, "Click" and remembers exactly what she sees.  I remember what Jessica looked like, what she smelled like, and what she felt like on my shoulder. "Click."

And I remember the day of Alex's autism diagnosis.  The early childhood team came to our home for their assessment.  We'd already had multiple assessments and phone consultations so the diagnosis on this day was a confirmation, not a surprise.  But it was still a moment that changed everything.  I remember the feeling of knowing I would have to become an expert about autism, and I didn't want to.  I remember the fear of not knowing, and wishing I had a crystal ball to tell me everything would be okay.  I didn't have a crystal ball.  But I did have John.  John who reminded me that nothing was changed.  Alex was still our beautiful son.  He reminded me that our job as parents was to take our children from where they were as far as they could go.  He said that might look different for Alex, but it was still the same job.  And we did become experts.  But we also vowed that autism wouldn't define Alex and wouldn't define our family.  And that we wouldn't become so obsessed with chasing miracles that we would give Alex the message that we were trying to fix him because he was broken.  We never, ever wanted him to believe that he was not good enough, or less than.  We found a way to live life and have joy.  That was our choice.

I remember Alex's first communion and all the preparation.  I remember my panic when we got to the end of mass and I didn't know what to do because we never practiced the end of mass.  We practiced going in, and we had an "escape" plan that Father and the teachers knew about so we could take Alex out early if he needed to go.  But he didn't need to go.  He made it through the entire mass, and he received his sacrament, and then it was time to process out with the rest of the communicants.  It seems silly now, but it had honestly never occurred to me we'd make it to the end, but we did.

And Jessica had many "moments."  There were so many recitals and concerts and plays.  She was involved, talented, and accomplished.  And many of her "moments" were things that were too difficult for Alex to participate in.  Sitting through a play or a recital or concert was impossible for much of their childhood.  So Jessica had to learn at a young age whether the event was a "one parent" or "two parent" event.  A "one parent" event was one that she was excited about but she could be content to have only of us attend and the other would stay home with Alex, or the three of us would attempt to attend and she would be okay if one of us had to leave with him.  A "two parent" event was more special to her, and then we would make arrangements for Alex.  It was always a balancing act.  Our fear was never that Jess would demand too much but the opposite.  We always feared that she would put her brother's needs before her own and not tell us her true desires.

Now there's the cancer diagnosis.  Another life moment that changes everything.  You get the news and the whole world looks different, feels different, sounds different, smells different.  I feel sheepish for thinking that autism was the defining moment of our lives.  Autism changed the direction; cancer really does change everything. 

So now you have a choice.  We didn't choose cancer, and we can't control the outcome, but we can put forth our best effort.  We can help Alex and support him.  We can literally and figuratively hold his hand through every treatment.  Once again, we have to become experts in an area we didn't think we'd have to know anything about.  We know so many words now that we didn't know three months ago.  But we're also lucky.  Hodgkins is a very treatable cancer with a high cure rate.  Alex is young and was very healthy before cancer.  He has a support system that won't give up on him. Now there's a point in time that's "before cancer," but I know that we'll have a point in time that's "after cancer."  We have much to look forward to.  Jessica and Rusty's wedding.  And the family celebrations that Jessica and I are already planning for "after cancer."

I wonder how many of those clocks I need on my wall?

Laughter in the Waiting Room

We spend a lot of time in waiting rooms these days.  I remember that waiting for doctor's appointments was truly excruciating when Alex was younger.  As a toddler, I would work to keep him distracted and within arm's reach.  He had no fear and would wander anywhere, so I could never be one of those parents who read a magazine and assumed their child would remain nearby.  In the waiting room of our family doctor, there was a play area for the little ones.  It held a big toy box with lots of donated toys.  Jessica and Alex loved those toys!  I cringe to think about it now.  All the sick children playing with the same germ-infested toys.  What were we thinking?  But the toys kept them occupied.

After the toddler stage, he became more anxious about waiting at the doctor's office.  By the time he was about 9 or 10 he would have a full-blown panic attack.  His pulse would race, his blood pressure would rise, and he'd develop a rash over his face, neck, and arms.  I'd sing to him, read to him, play games with him - anything to calm and distract him.

John and I used to say, "What would we do if Alex ever had a serious medical issue?  How would he handle it?  How would we cope?"

At about the age of 13 he had a bump on his knee.  It was a benign bone tumour called an osteochondroma.   He had it removed in outpatient surgery.  He did very well.  The doctor recommended crutches or a walker for post-surgery.  Even though insurance would pay, I didn't want to buy a device that I wasn't sure Alex would use.  Our friend, who is a PT, was able to borrow a walker for him.  When they were getting ready to release him a few hours after his surgery, we tried to show him how to use the walker so that he wouldn't have to put all his weight on the leg he'd just had operated on.  I demonstrated.  Alex watched.  Then he took the walker, lifted it up, and carried it across the hospital room while he walked.  So much for that experiment. Good thing we didn't buy one.

When Alex was 19 he had to have his wisdom teeth out.  We were hoping to avoid that, too, but he got an infected tooth while we were in California visiting Jessica.  Jeanne was staying with him and called us because he had a red, inflamed cheek.  She got antibiotics from the dentist and we made an appointment with an oral surgeon for as soon as we got back.  The oral surgeon did the surgery under general anesthesia.  It went well.

Thank goodness, we thought.  These things went well.  Just enough so that Alex has some experience under his belt, but hopefully nothing worse will happen.

Don't mock the universe.  It never goes well.

In the last three months there have been so many doctors and doctor's visits, so many waiting rooms, and so many facilities.  We cope with laughter. 

A dark sense of humour can be really helpful.  (A gentleman got on the elevator after us last week.  "What floor?" I asked.  "Four," he replied.  "That's good, " I said.  "We're going to two, and you sure don't want to go to two if you can help it.  That's oncology."  He just pretended I wasn't there.)

We travel in packs with Alex.   A couple of times it's just been John or I with Alex at an appointment, but usually it's both of us and perhaps one or more other people.  Sometimes it's Jessica, or someone from Alex's house, or Allison.  Last time Jessica was home, we all went to Alex's blood draw.  There were five of us, gathered in the corner of the waiting room.  I don't remember what we were talking about, but we were loud and laughing and just being kind of ridiculous.

At chemo last week, John and Allison were having a debate about something.  There was good-natured, sibling bickering going on.  They're going back and forth, and laughing, and arguing.  The nurses' station is right outside our door, and I see them peering in, smiling and laughing at us.  I don't think they know what to make of us.

Laughing is our way of coping.  Alex has become really good at waiting.  He is patient.  He is usually anxious, but he works so hard.  I don't think most people understand what it takes out of him to go through these appointments and procedures.  Sometimes there's a lot of rocking and some vocalizing.  We remind him not to get too loud but it is what it is.  I don't care what people think about his rocking or the sounds he makes.  He's coping the best that he can.  He's coping with waiting, with uncertainty, and with cancer.  And he's coping with a goofy family; maybe that's the hardest thing of all.

We've Got This!

Jessica and Alex have always shared a special bond.  Jessica was just 19 1/2 months old when we brought her brother home.  She thought that bringing a baby home for her was the best idea we'd ever had.  She never seemed to have a moment of jealousy or apprehension.  She didn't ask me to take him back.  I take absolutely no credit for this; it was just her nature.  She was excited throughout my pregnancy and excited about the new baby.  She tried to mother him right away.  We had to stop her from trying to feed banana slices to a newborn.  She still used a pacifier, and she would trade with her brother.  Grabbing her own from her mouth, then his, and switching.  Not at all hygenic, I know, but it was so darn adorable.

Alex's autism was diagnosed when she was three.  She's told me since that she doesn't remember this time in our lives.  There is no "before" and "after" the diagnosis like there is for her dad and me.  There's just Alex.

We tried hard not to rely to much on her for help with her brother.  It was difficult, always, to hold her back.  Her instinct was always to mother him.

At ten, she asked my mother if Alex would ever go to college.  Grandma told her gently that no, he probably would never go to college.  "That's okay," Jess replied.  "I'll go to college, and then when I'm done he'll come and live with me."

Throughout Alex's life, Jessica has been beside him, guiding him and protecting him.  Despite our best efforts to shield her from taking on too much responsibility, we were powerless to stop her.

When Alex graduated from high school, we planned and orchestrated a private ceremony complete with a processional, music, speakers, school board member giving him his diploma, and a slide show.  Jessica escorted her brother down the aisle at the beginning of the ceremony.  She and John's cousin, Lynn, sang "For Good" from Wicked as the closing song.  There wasn't a dry eye in the house.

At nineteen, I faxed guardianship papers to her in Boston.  We were completing the legal guardianship process for her brother, with her dad and me as his guardians.  Part of the process was to have her named as back-up guardian, should something happen to both of us.  Late that night, I emailed her.  I had gotten caught up in all of the details, red tape, and delays in the guardianship process.  I forgot, for just a moment, that other nineteen year olds do not sign legal papers to become their sibling's guardian in case something happens to their parents.  I apologized in the email, and thanked her for always being there for her brother.

I've always been pleased that she felt she could go far away to school, and far away for her job.  I'm glad that she didn't feel she needed to stay close by because of her brother's disability.  The truth is, the distance isn't so bad.  We talk almost daily, and we travel frequently.  Alex doesn't travel long distances easily, so she comes here to see him.  At any rate, despite the geographical distance, Jess and her brother remain extremely close.

So as soon as we got the news about Alex's cancer, I knew I was going to have to call Jessica at work, 2,200 miles away, and give her the devastating news.  My heart had just been broken by learning that my son had cancer.  Now I had to tell his sister.  More heartbreak.

I called her work phone, which I never do.  She answered and the tone of her voice told me she was wary about the number on her caller id.  I had called from her dad's phone, so she was somewhat surprised to hear my voice.  I honestly don't remember the exact conversation, but it went something like this:

"Hello?"

"It's mom.  We were at Alex's doctor's appointment.  It's bad."

Silence.

"He has cancer."

I'm crying by this point, and she starts crying, too.  At work. Alone.  Did I mention she was 2,200 miles away?

"I want to come home."

"We'll figure something out," I start to say, and I'm trying to be practical.  I hadn't thought about this.  We've known for less than an hour that Alex had cancer, so I was still in a fog.  She hung up the phone before I could say much more.  She called back about 10 minutes later.

"I found a flight.  I get into Milwaukee at 10:05.  I have to go talk to my boss."

And that was that.  Jessica spoke with her cube mates and her boss, and left her office.  She went home and packed a bag, and drove to LAX.  John and I went to our respective works and talked with our bosses.  I had texted my principal as soon as I had gotten the news.  I'd been off work for a week for Alex's surgery, and was due back at school the following day. My principal and my fourth grade team all knew I  was getting biopsy results that morning.  I cried in my principal's office and tried to figure out a plan.  We had no plan yet, and wouldn't get one for more that a week.

John and I drove to Milwaukee and picked Jessica up.  We had returned Alex to his group home that morning, after the appointment.  The next day, the three of us picked Alex up for lunch.  Jessica was with us for the first oncology appointment.  She was with us as we all tried to process what was happening.  Together, we were unified.  Together, things were a little less terrifying. 

"We've got this," we told each other.  And the funny thing is, we knew it was true.  We didn't yet have any idea what we meant, but we knew that anything we had to face, we could face together.

The four of us clung together, figuratively at least, for that weekend.  We also laughed and talked about the wedding and non-cancer things.  We tried to be just "us."  The before-cancer us.  And it worked, at least a little.  It worked enough, anyway, to get us through those first days.

By the time Jess went back to California on Monday, we were less in shock and ready for a fight.  When Jess booked her flight and was coming home, I told myself she needed to do it for her.  She needed to see her brother and she needed to be here.  When she left to go back home, I realized we needed her to be here.  We needed her every bit as much as she needed us.

You must do the thing you think you cannot do. - Eleanor Roosevelt

You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I have lived through this horror. I can take the next thing that comes along.' You must do the thing you think you cannot do.

-Eleanor Roosevelt

You must do the thing you think you cannot do.

I admire Eleanor Roosevelt, and she has many quotes that inspire me.  I have the last line of the one above as part of my signature on my school email this year.  I was thinking about that quote as a way to push myself to always be a better teacher.  I needed that thought to spur me on at the beginning of the year as I learned the challenges of this year's group of kiddos.

Little did I know that there was so much more in store for me....

The story of how we got to Alex's cancer diagnosis is swirling around in my head this morning.  I've told it many times, and I replay it in my head even more.  People are curious, or maybe just polite, but it's actually a bit cathartic to retell it.   Maybe because, even now, it doesn't quite seem real.  It's like it's happening to someone else.

Here are Alex and John, last spring, at the Domes in Milwaukee.  Father and son, almost twins in appearance, body shape, and style.  That's important, because that's how I first knew something was different; something was wrong.

Here's my guy, helping me bake.  In both photos, take a look at his neck.

Over Christmas, when Alex was home, I noticed that his neck looked different.  It looked fuller to me, but I wasn't sure that it really was different or if it was just me.  I still am not even sure how to explain it, but something seemed off.  During the holidays, he had a cold with a sore throat, followed a short time later by a brief bout of stomach flu.  He just didn't seem to bounce back.  He was tired, and his appetite was off.

In January, Alex was home again for an overnight.  John was gone to Arizona for work.  I was helping Alex get ready Saturday morning and planned to take him back to his house.  I looked at him, and I knew something wasn't right.  I started feeling the glands in the side of his neck, fully realizing I had no idea what I was actually looking for.  I didn't really feel anything, but then I felt under his chin.  That's when I found it.  A lump.  A large lump.

Allison was on her way over because we had some errands to do.   I had her feel the lump.  She agreed that it wasn't right.  It was Saturday, so I decided to go to Urgent Care.  (Also, our insurance changed Jan. 1 and our primary care physician was not in our new plan.  I cried in my principal's office when I realized that I could no longer see my doctor of 29 years.) Getting a new doctor was on my January "to-do" list, but I hadn't done it yet.

I took this picture at home before taking Alex to the doctor on January 17,  and I printed a picture of Alex where his neck looked the normal size.  Allison and I took Alex to Urgent Care.

I explained all the symptoms - lump in the neck, full neck, fatigue, lack of appetite. I showed her the "before" picture.  The doctor felt the lump and said, "That shouldn't be there.  You need to see an ENT, you need a CT scan, and it needs to come out."

Monday the ENT called, and Wednesday we went to see him.  I explained the same story and symptoms.  He examined Alex, felt the lump, and measured the lump.  He wasn't particularly concerned about the other symptoms and I had no idea at that time if they were all related.  The lump was certainly an obvious problem.  The doctor said we'd need a CT scan.  We talked about whether or not to do it sedated.  The doctor would have preferred not to sedate, but we (Allison and Alex's caregiver, Tara, were there, too) were all pretty insistent that sedation would be necessary.  We went to the schedulers office to schedule the procedure.  She got on her computer and her phone, and started trying to make the arrangements.  She was typing away, and then suddenly she said "The insurance sent it in for review.  We can't schedule it today."  It could take up to a couple of weeks she told us.

So we got sent home.  It took another week of waiting, receiving a denial, appealing the denial, a peer to peer review between the doctor's office and insurance, with the end result still being a denial.  Meanwhile, I am calling the doctor every day, because Alex isn't eating, and is getting sicker and sicker.  He didn't seem to be in pain from the mass, but he was not well.

The doctor ordered an ultrasound and needle biopsy.  By this time, John was home from Arizona.  We went to the ultrasound.  The very nice technician was quite surprised to see our family.  On paper, Alex is a 24 year old man.  Due to privacy laws, it is not shared from one doctor or procedure to the next that Alex has autism and is nonverbal.  Surprise!  In walks our family.  She did a wonderful job with Alex.  She talked directly to him, respectfully.  Alex did a wonderful job.  He complied well with the ultrasound.  The ultrasound confimed a 4 1/2 cm x 4 1/2 cm mass under Alex's chin. 

Then the very nice radiologist came in and prepped Alex.  The radiologist took out a tray of very long needles.  Alex was supposed to lay still and have a stranger poke a very long needle into his neck in a spot he couldn't see.  Alex sat straight up.  We got him to lay back down.  He sat up again.  The radiologist realized this wouldn't work, and said we'd have to reschedule and do the procedure under general anesthesia.

We sighed.  John asked what we could do differently, because we've had this unfortunate experience before - that a test or procedure was needed, and Alex's special circumstances were not communicated to the people that needed to know. 

As the radiologist was processing the situation, and thinking about what to do next, he told us  he would recommend surgery to the ENT, and also recommend that the ENT not wait for the biopsy or do the extra sedation to get the biopsy, since clearly this mass had to come out.  Why waste more time and put Alex through more procedures when clearly surgery was going to be the final answer.

Home we go.  We wait for the ENT to call.  The office calls and sets an appointment for two more days away.  It's almost two weeks since the first doctor visit, and I feel like Alex's neck is growing.

We go back to the ENT, and discuss our options.  He recommends surgery.  We say yes.  (I was ready to say yes two weeks ago, I think to myself.)  There are about four different, benign, things the mass could be.  It could also be cancer.  They don't know.

They schedule surgery for the following Thursday.  The PA examines Alex for the pre-op and finds an enlarged lymph node on his collar bone. 

"Hmmm.  Was that there before?"

"No.  What does that mean?"

"I'll tell the doctor."

And it wasn't brought up again.

Surgery goes extremely well.  The mass comes out easily and is all self-contained.  It was the size of a golf ball, in Alex's neck and just under his tongue.  "No wonder he wasn't eating!" we think.  John and I stay overnight in the hospital with Alex.  He does really well.  He's quite a trouper.

The mass his gone, but by now he looks like Winston Churchill.  His neck his huge.  During recovery at home, he sleeps a lot and eats almost nothing.  And we wait for biopsy results.

At this point, he looks like he has no neck.  But no doctor we've seen has ever seen him before.  The lump is the only topic of conversation.

I call the ENT office daily, checking on biopsy results.  Nothing,  I promise John that I'll stay off the internet.  He's worried about me, and reminds me that every time you look up a medical symptom on google it comes back with dire results.  It won't change the outcome, and it will make you crazy in the meantime.

Alex is due for a follow up appointment for suture removal, although they didn't end up using sutures, they used superglue.  The night before the appointment (at this point we're six days post-op with no news about the biopsy) the receptionist from the office calls and asks if I still need the appointment since he didn't get stitches. 

"They wanted us to come in anyway and have it looked at.  Besides, we still don't have the biopsy results."  I say.

"Oh?  I'll check on that."

Hold for about 3 - 4 minutes.  Terrible music.

"Oh yes, they want you to come in."

"Are the biopsy results in?"

"They want you to come in."

I hang up.  Well, that's not good.

John is gone and I'm home alone that night.  I google "enlarged lymph nodes on collar bone."  Every hit that comes up is cancer.  Enlarged lymph nodes on the collar bone is not good.

Hodgkins Lymphoma seems the likely diagnosis.  Finding a mass in a lymph node in the neck is commonly how it's diagnosed.  Once it's removed and biopsied, a signature cancer marker is found that indicates Hodgkins.  An enlarged neck (check), fatigue (check), loss of appetite (check), and weight loss (check) are key symptoms.

When John gets home, I admit I looked on the internet.  He's understandably upset with me because I broke my promise and now I'm upset and yet I don't have real information from the doctor.  We both sleep fitfully.

The next morning, we go to the appointment with the PA.  She starts talking.  Her nurse brings a stack of papers and places them upside down in front of her.  The ENT comes in.  They look at us.

"We have some bad news.  The biopsy came back, and it's Hodgkins Lymphoma."

I know, I think to myself.  I have imagined this conversation continually for the last 18 hours.

John and I cry.  They explain.  They give us the handouts; the upside down papers the nurse brought in, not really so discretely after all.

"I knew this is what you were going to tell us." I say.

Alex is sitting in the exam chair, wondering why his parents are crying.  Does he understand anything at this point?  I don't know.  I hug him, I touch his face.  He looks at me.  How do you treat someone who has autism and is nonverbal for cancer?  I don't know.  And I suspect they aren't really sure either.

You must do the thing you think you cannot do.

I don't know how we're going to do this.  But I guess we're going to have to figure it out.