Wednesday, December 14, 2016

Have Yourself a Merry Little Christmas

I really love Christmas. I love Christmas magic.

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

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

Carrie (Me) and Mom (Bunny) circa 1967

The "stain glass" windows were inserts made from gels that my sisters made.
Carrie (Me) decorating the tree circa 1972

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

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

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

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

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

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

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

Cancer has tried it's best to destroy Christmas. 

Dad was diagnosed with esophageal cancer in December of 1993.

He died December 23, 1994.

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

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

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

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

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

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

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

Alex, Dec. 22, 2015

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

After Alex's stem cell transplant, he was in remission for eight months. That all came crashing down on October 17 when we learned that he had relapsed. (Setback)
Alex has had two cycles of a clinical trial in an effort to beat back the cancer. This is not a curative treatment. Our options at this point are not curative. We learned last week that Alex's cancer has responded to the treatment; a new PET scan shows that the tumour has shrunk. But things are never simple when cancer is involved. He is in the midst of a tremendous rash (covering more than 75% of his body) that is a reaction to the treatment. Next week we find out next steps.
In the midst of all of this, Christmas is fast approaching. We have all these fears and feelings to deal with. Holidays bring up wonderful, warm feelings, but they also have a way of accentuating less desirable feelings. The thing is, they are all authentic feelings. Christmas brings up so many memories.

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

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

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

I will feel Christmas magic.

Have Yourself A Merry Little Christmas
by Hugh Martin and Ralph Blane

Have yourself a merry little Christmas
Let your heart be light
Next year all our troubles will be out of sight
Have yourself a merry little Christmas
Make the yuletide gay                                      
Next year all our troubles will be miles away

Once again as in olden days
Happy golden days of yore
Faithful friends who are dear to us
Will be near to us once more

Someday soon we all will be together
If the fates allow
Until then we'll have to muddle through somehow
So have yourself a merry little Christmas now

Friday, October 21, 2016

Pike's Peak

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

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

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

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

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

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

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

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

Thursday, October 20, 2016


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

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

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

Not Curative.

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

Now I can't breathe.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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