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Sean's Burgundy Thread: Myeloma Christmas Memories

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Published: Dec 7, 2011 12:08 pm

“Daddy, do you remember that Christmas when you were bald?” my eight-year old daughter Lizzie recently asked me.

Until that point we had been talking about the eagles that occasionally glided in the skies above the lake next to our home in the Ozarks of southwestern Missouri.

“Uh… yes,” I chuckled, amused at her segue from bald eagles to the cue-ball that I had donned three years earlier during my chemotherapy treatments for myeloma. “Do you remember when I was bald?”

“Yeah, of course I do. There’s a goofy picture of you and me in the family room. You were bald.”

“Watch it now! What I mean to say is that you were barely five years old - do you remember much about that Christmas?”

“I remember that you were bald and that Katie and I went to Aunt Susan and Uncle Howard’s house for Christmas. You and Mommy went to Arkansas. Oh, and you were bald,” she giggled.

Diagnosed with multiple myeloma in November of 2008, I began my first induction chemotherapy on December 9th at the Myeloma Institute for Research and Therapy (MIRT) in Little Rock, Arkansas. And, yes, my graying locks wasted little time in making a hasty chemically-induced retreat from my head -– and everywhere else, don’t you know!

My wife, Karen, stayed with me in Arkansas during that initial induction phase, and our two daughters, Katie, then eleven years old, and Lizzie, five, were with my sister-in-law, Susan, who had come down from Chicago to Missouri to be with our daughters.

Karen and I felt strongly that it was important that the kids experience as little disruption in their lives as possible during the ensuing months of my cancer treatment. We wanted them to be in the familiar surrounds of our home, near their friends, in their school, and near their church family.

And as much as we missed them, we also knew that it wouldn’t be a good idea for me to be exposed to their little-kid germs in the close confines of our rented West Little Rock apartment.

Even in the midst of our own gripping fears, Karen and I tried not to show our trepidation at what was ahead for our family. We wanted to spare them from any needless worry -- especially at Christmas time.

Katie and Lizzie both knew, of course, that Dad was pretty sick and that it was best that Mom be with him for awhile. Without us having shared all of the scary details, Katie’s clingy hugs, curious questions, and occasional teary eyes told us that she had an inkling about the seriousness of what was going on.

Though we hadn’t explained what myeloma would or could do in explicit terms, Katie finally shared that she was afraid that I was dying and wouldn’t come home again.

Yikes! My beautiful, smart, responsible, bubbly eleven-year old daughter was terrified that I was going to die. I’ll admit that Karen and I had those same thoughts, too, but it broke my heart to think that Katie was enveloped in her fear of losing me.

I have shared before that both of my kids were abandoned in China and that we adopted them when they were young. I promised Katie that there was no way on earth that I was going to abandon them now and that we needed to have the faith that God, and the doctors, would take care of us and that everything would work out.

I prayed daily that I could keep that promise. Some days I wasn’t so sure.

I don’t normally advise that a parent give their pre-teen a cellular phone, but that’s what we did. I wanted Katie to be able to call me day or night. We burned up the phone lines! She called me often, and I was glad to hear the phone ring.

And then when Katie discovered texting, well, she took that technological art form to a new level! One morning, a few months later, Katie texted me in Little Rock and asked me to guess how many messages she’d sent the previous month.

I offered ‘200.’

Nope, higher, she countered.

Surely she hadn’t sent more than 20 a day, so I guessed ‘600.’

C’mon, Daddy, try harder.

Long story short – Katie had sent 20,000 messages! If she hadn’t been a straight A student, played sports, was active in our church youth group, volunteered in the community, and was an all-around good kid, I might not have heeded Karen’s advice to ‘pick some other battle, some other time, we have bigger fish to fry.’ Indeed we did –- text away, Kate!

On the other hand, little Lizzie seemed to roll with the punches and had a Daddy-will-be-home-soon attitude. Though she didn’t get a phone – not that she didn’t pester me for one for weeks – Lizzie and I talked often about the goings-on in her world. Thank you, AT&T, for unlimited talk and texting!

Karen, an organizational planner extraordinaire, set out to orchestrate a master schedule of caregivers for me when she was at home and for the children when she was with me in Little Rock. It was important that Karen be home as often as possible with the kids, that she kept her music teaching position (and our insurance!), and that she plowed ahead with her Master’s Degree coursework to enable her to become a school principal.

Without even asking, many generous folks offered to pitch in. By the time I had completed my nearly 10 months of treatment in Arkansas, an impressive list of dear friends and relatives from as far away as New York, New Hampshire, Virginia, Illinois, and Missouri came down to stay with me. I still become emotional when thinking about how much love and support we’ve been shown during our myeloma journey.

“Did you have a nice Christmas with Aunt Susan and Grandma and everybody that year?”

“Yeah, it was fun, Daddy, but we missed Mommy and you. Everybody did. I think Grandma cried. I remember worrying that Santa wouldn’t know how to find you and Mom down there in Arkansas.”

During the Christmas break at school, Susan had taken the kids up to Chicago to be with their Grandma, cousins and other relatives for the holidays. Karen and I talked with them everyday and every night at bedtime. Though I’ve never been one to enjoy chit-chat or small-talk on the phone, I cherished every second that Katie and Lizzie went on about their days. A few months later we discovered the joys of using Skype, a video conferencing program.

I’ll admit that my chemo addled brain doesn’t remember many of those conversations, but I do remember how good they made me feel.

We celebrated my birthday on the 18th, but had no cake because I had massive mouth sores. On December 25th, Christmas Day, Karen and I went to the infusion clinic twice for treatment and to get shots in order to prepare for my stem cell harvest that would take place on the 29th, our 16th wedding anniversary.

On the 31st, Susan left Chicago with the kids and headed to St. Louis, where my brother Michael picked our daughters up. Michael drove them to Springfield, MO, where our friend Brenda and her son, Dan, began the five-hour trek of bringing the kids down to Little Rock.

At 10 p.m., Brenda, Dan, Katie, and Lizzie rolled in, and we joyfully celebrated the arrival of the New Year.

“Liz, do you remember celebrating New Year’s Eve in Little Rock?”

“Yes! I remember that we came into the apartment, and I was afraid that I wouldn’t recognize you because you didn’t have any hair!”

“Well, did you?”

“Yes! You were still my Daddy. But, boy, were you bald!”

And now, after a year in Arkansas for rounds of high-dose chemo, stem cell transplants, blood clots, surgeries for bone problems, and then two years in Missouri for weekly maintenance chemo, I’m feeling pretty good! And yes, my hair has grown back.

Sean Murray is a multiple myeloma patient and columnist at The Myeloma Beacon.

If you are interested in writing a regular column to be published on The Myeloma Beacon, please contact the Beacon team at .

Photo of Sean Murray, monthly columnist at The Myeloma Beacon.
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  • Sarah Gorrell said:

    Wonderful story....and so glad for your happy ending!

    Thankfully, things are better at our house this Christmas....than last. Great doctors, successful treatments, and many prayers work wonders!

  • John S. said:

    Interesting, isn't it, how we value our kids, and to what lengths we'll go to protect them?

    When I was in the process of being diagnosed (a process that took the better part of a month before the onc categorically concluded that I had Myeloma), one of my biggest challenges and concerns was managing my kids' reaction to the situation. I was honest, but did not offer "full disclosure" insofar as I did not do any verbal speculating as to the possibilities, even tho I was certainly doing so internally, and even tho both my family doctor and onc had speculated that it was probably Myeloma.

    And throughout this process, leaving my kids with as positive an impression as possible has remained an important thing for me.

    Thanks for posting this!

  • Kansas said:

    So glad things are going well for you-may you and your family have a blessed Christmas. Enjoy the holidays, you deserve the very best. Your neighbors to the west. Rex & Kay

  • Gary Petersen said:

    Sean, I have read a number of your posts but none have spoke to me like this. I remember holding my granddaughter for the first time in the Intensive care unit of Mayo clinic, when the whole family came because they did not think I would make it out of the hospital. Now over 5 years later I also thank God for a wonderful family! Best Regards Gary

  • Forrest said:

    Thanks for sharing [that part] of you story.
    When we were in those corporate apts in Little Rock it was always a real treat for a family member or old friend to call, show up and be available for us. It means a lot and hard to describe. That is why I enjoyed reading your story,because you articulated it so well. Best wishes to you and your family.

  • Nancy S. said:

    Hi Sean...thanks for sharing your wonderful account of the Christmas season when you were in hospital, and the daughters were younger. Kids can really surprise you with their perceptiveness and caring....So glad to hear that you and your family are doing well now. My two daughters, in their twenties, helped me out a lot in similar circumstances. i didn't want to upset them too much, or interfere with their studies, but they were just great and used to visit me in the clinic (in my home city) or at home or phone every day...and they did both graduate last spring from nursing and medicine. I was so proud to attend both graduation ceremonies...somehow wasn't sure if I would be there earlier in the treatments! And guess what...now they both have an interest in doing oncology work in their careers. So I guess it was a learning experience for all of us.

  • Sean Murray (author) said:

    Thank you, Sarah! I join you in believing that prayers work wonders.

    John- thanks for sharing your story about dealing with your kids in a positive manner. As I wrote, my daughters were 5 and 11 - it's been a distinctly different experience for each of them. In hindsight, we probably didn't give Kate as much info as we should have, not that there was much good to say at the time. All the best to you, John, in your joust with MM. I'll bet that you hug your kids as hard as I do!

    Merry Christmas,Kansas neighbors Kay and Rex! We've already had snow in Branson. Snow I don't mind. It's the ice that gets in the way of my getting to my Velcade infusions. Great to hear from you!

    Gary, I teared up picturing you holding your granddaughter while you were in the ICU at Mayo. It gets driven home during our MM battles that the most important things we have are our relationships. I pray that you have many more years with your loved ones!

    Hey Forrest - best wishes to you and yours, too! We stayed at the Northwest Hills apartments on Mara Lynn in West Little Rock. A Little Rock church approached the apartment management several years ago and guaranteed them occupancy for a dozen or so units. The church fully furnished them, hooked up cable, local phone and internet and offered them to cancer patients. No deposits, no contracts. We kept one for 10 months. They've helped hundreds of MM patients through the years. Now THAT'S a great ministry! You're right - seeing familiar faces pop in was amazing!

    Go Nancy's Girls!! I'm happy to hear that you were able to share graduations with them. We all long to be there for our kids for their milestone events. I've also learned that it is those little, day-to-day things, the 'mortor' around the bricks, that keep me going, as well. The quick hugs and 'I love yous', patching up a scraped knee, checking homework, etc. Happy, Happy Holidays to you, Nancy! Keep in touch.

  • Lori Puente said:

    Another wonderful post Sean. I just love your family and the stories you share. It's very hard to deal with cancer and children. Even though mine were older, it was still traumatic and life changing for all of us. But my eldest when asked if he could fly to California and take care of his Dad instead of getting a summer job said, "Yes. I can be there in 3 days. I just have to pack up my apartment." When I arrived 6 weeks later and the three of us went out to eat, he proudly said, "I'll have you know, this is the first food Dad has eaten that I didn't personally prepare!" I was, and am, impressed at how he rose to the occasion from the typical self absorbed college student enjoying not living at home, to step it up and lend a tremendous helping hand! :)

  • Lisa B. said:

    Thank you Sean! Your posts are always touching and inspiring, and I can't wait to pass this latest one along to my mother! Blessings, Lisa B.

  • Susie Hemingway said:

    Such a wonderful column Sean, another great insight into your marvellous family and the love of your little girls and them for you. I also remember well when Hamada lost his hair - well Jo our youngest helped him with the final shave and declared he looked like he belonged in the King and I.We all agree he did! Sending all very best wishes of the season and I sincerely hope you have a very happy Christmas as I am sure you will.

  • Sean Murray (author) said:

    Lisa - give my best to your mom! You are an awesome caregiver! Happy Holidays and Merry Christmas!

    Lori - It is great to hear that your son seems to be cut from the same cloth as his incredible parents. We need several more million young folks like him. Merry Christmas to you and Dave, friend! BTW - I'm going back to MIRT in the first week in April. When will you and Dave be there?

    Susie - thank you for sparking my imagination into seeing Hamada in the starring role in the King and I! Yul Brynner - eat your heart out! A blessed Christmas to you and yours, as well! BTW - I'm on the second read of your lovely book - it's on my nightstand. :)