Sunday, August 10, 2014

The Time I Saved My Mother: A True Story

what my bone marrow transplant probably  looked like at the onset of the procedure

                            An Organ Donor of Sorts

My mom was first diagnosed with leukemia when I was five. Her initial treatment was the gold standard of over fourteen years ago, which was a particular cocktail of chemotherapy drugs and some radiation for good measure. The drugs appeared to be accomplishing their purpose, but the leukemia did what it sometimes does, which is to come back even stronger than ever inside a body that has been ravaged by the effects of chemotherapy and radiation and is strong enough neither to fight the disease nor to withstand another round of the drugs that might wage the battle. This is the point at which bone marrow transplants often come into play.
My dad had anticipated the possible need for a bone marrow transplant long before the need became an actual reality. As an oncologist/hematologist involved in research pertaining to particular forms of leukemia and lymphoma, he had in the initial months after the diagnosis anticipated an eventual need for the transplant and had quietly gone about the work of having all willing blood relatives tested for compatibility.
My mom expressed to my dad in the early months of the illness that, were a bone marrow transplant ultimately needed, she would be unwilling to receive bone marrow from my brother or me, or, for that matter, from any child. My father had downplayed the possibility. Children aren't often compatible donors for their parents, he told her. Then, as my mom's five available siblings (the sixth sibling was herself battling breast cancer and was not even considered as a donor) turned up one after another as unsuitable donors, my dad, on a whim, had himself tested. In what came as a major surprise to the rest of the medical community but not for some odd reason to him, my dad was a far more suitable donor for my mom than had been any of her siblings. He still wasn't a perfect match, but had no other donor been available, his bone marrow would have been close enough to attempt. He knew, however, that if he was an acceptable donor for my mother, that any offspring produced jointly by him and my mother would most likely be an even better match.
My brother and I were tested. Matthew was a good match. I was a better one. That knowledge was filed away in the hope that it would never be needed. It was, unfortunately, needed, as was discovered when the leukemia again reared its ugly head.
How does a team of medical professionals go about harvesting bone marrow from the body of a six-year-old girl without her mother's knowledge? It took the form of a bit of subterfuge involving a supposed
trip to Disneyland for the mother's six-year-old twins. My Aunt Heather devised a scheme in which my mother would believe that she and my Uncle Steve were taking my brother and me to Disneyland. Another aunt's van was loaded with Matthew, me, and our suitcases. My mom stood on our front sidewalk, leaning on my dad for support and waving at us, watching as we pulled out of her sight. I believe she may have been crying, though she had a forced smile on her face. Her condition was probably as grave as it was since she had received the diagnosis. I wonder now if the thought had occurred to her that she might not see us again. I can still hear her in my mind arguing with my dad about the Disneyland trip late the night before we were to depart. She told him she didn't feel right about it, but was unable or unwilling to articulate her specific concerns. My dad was unusually adamant that we absolutely had to go on the trip, which wasn't, of course, a trip to Disneyland at all, but a way to get me away from my mother for long enough for medical team to give me the preparatory treatments and harvest the substance of life for my mother without her knowledge that I was in any way involved.

Three blocks away from our home, the van was stopped. The other aunt took her van back with Matthew in it. Matthew and the other aunt drove away to an amusement park that wasn't quite Disneyland but was close enough to pacify Matthew. My suitcase, my car seat, and I were loaded into Uncle Steve's car, and he and Aunt Heather took me to the hospital for the final round of blood tests and the first of the five injections to prepare me for the transplant. Additionally, I needed to be fattened up and nourished to the extent that could be done in the short amount of time with which the doctors had to work.  I was still recovering from  undernourishment to the point of actual illness resulting from an extended family member who was hired to care for Matthew and me while my father was dealing with my mother in the hospital,  but who instead  essentially left the to of us to fend for ourselves while she slept, watched mindless TV, and ran up our phone bill with long distance calls to her boyfriend. If the "babysitter"  ventured from the family room sofa beyond trips to the refrigerator and microwave to prepare her own frequent and calorie-laden snacks (Matthew and I 
were on our own in that regard), to the bathroom, and to her bedroom, I never witnessed it.

On the chilly December morning of the procedure, I arrived at the hospital before the sun did, wrapped in a blanket and carried by Uncle Steve, and still wearing my Britney Spears pajamas that some harebrained relative had considered a suitable Christmas present for a tiny five-year-old girl the previous December. (The Christmas before, the same relative had given Matthew and me stuffed dolls in the image of Eric Cartman and Stan. My parents allowed us to keep them since we had no clue who the two characters were and had no knowledge of the program.) My hands clutched the stuffed baby harbor seal my Uncle Steve had purchased at the hospital gift shop the previous day after I had cried during the final preparatory injection, and a nurse assisting with the procedure had been particularly insensitive in berating me because at the age of six I was too old to cry just because of an injection. i was told that later my father ripped into the lady as though she had attempted a presidential assassination,which,under the circumtances, was probably appropriate.(The stuffed baby harbor seal is the only stuffed animal that remains from my childhood still in my possession today.)  Uncle Steve handed me to my dad, who had been waiting for us in the hospital's lobby. My dad carried me as we made our way into the elevator and up to the fifth floor.
We were rushed through the preoperative station. My vital signs were taken, an IV was inserted, the anesthesia took effect, and all that was left was for some overweight woman to belt out an aria hours later that day after the marrow was injected into my mother's body.  I spent the night in the hospital as a precaution, but everything had proceeded without the slightest glitch in the plans. Uncle Steve, my dad's younger brother, who was at that time a first-year pediatric resident, stayed  in my hospital room with me all night, as did his wife. Steve was entitled to only three weeks of vacation time all year, and nine of his days off that year were burned in the process of getting me to the places I needed to be in order for the transplant to happen and to caring for me afterward. My dad told me later that he had tried to pay my uncle for his time but that Steve had refused to accept any compensation whatsoever. He and my aunt wouldn't even allow my dad to reimburse them for the  cost of the stuffed baby harbor seal, which, at hospital gift shop prices, probably set them back roughly as much as a week's worth of groceries.
My assumption was that the source of my mother's donated bone marrow was never intended to be a life-long secret -- that my dad planned to someday share the rest of the story with her -- but the particulars had not been broached. As it turned out, it didn't really matter. Some children may be better at keeping secrets than others are, but with most of them, the truth will eventually emerge. It did in my case.
On Christmas morning of that year, my brother and I, after the initial wave of opening presents, had forgotten our greed for just long enough to remember that each of us had made and wrapped little token gifts at school to give to our parents. Our father stood empty-handed as we both thrust our gifts at our mother, eager for her approval. She first opened my gift, which was a crudely-fashioned angel ornament, with a shiny pipe cleaner halo and silvery paper wings, and with my school picture  strategically yet incongruously placed where the face of the angel should have been. Mom smiled and thanked me. Then she opened my brother's gift, which was a refrigerator magnet framed by tiny green- and red-painted puzzle pieces. From my mother's reaction, one would have thought that either my brother or his teacher had personally invented both puzzle pieces and refrigerator magnets, as well as green and red paint. My brother eyed me smugly,  as if to imply, "I guess we know who won the battle of the tacky school-made Christmas gifts this year."
Without thinking, I responded to his sneer by blurting out, "So what? gave her bone marrow!" Oops. Sorry, Daddy. The elephant-sized cat was out of the bag and in clear view of everyone in the living room. 
My dad carried me up the stairs and more or less threw me into my bedroom and slammed the door. I heard the door to my parents' room slam as well, then I heard my dad open it and go in, and then I heard a whole lot of shouting. At one point my brother pounded on my parents' door and asked if he could ride his new scooter outside. My dad told him no and to play with his Thunderbirds Tracy Island toy instead.
Eventually the shouting stopped. We all came out of our rooms. I attempted to throw my hand-made angel ornament into the fireplace, but my dad's reflexes were and still are quicker than mine. the anfel ornament was salvaged.   it doesn't hang on our yearly Christmas tree, but  instead is in a fireproof safe in our home. My parents say that if a Christmas tree ever turn our house into an inferno, they don't want the ornament destroyed with the house, It means something to them now, apparently, that it doesn't mean to me and that it didn't mean at the time my mother first  opened it -- something about a gift from the heart of a child made  a with a few cheap craft supplies in a manner that appeared haphazard having more significance than it would appear at a first glance, and the importance of a child's feelings and of showing proper appreciation for what must have been a difficult task for me. (I remember bursting into tears when I the silver poster board wings i tried to cut, no matter how careful i was, came out looking like everything but angel wings. I believe I cut four sets of poster board wings -- and cutting through poster board with hands the size of a three-year-old while using scissors barely sharp enough to easily penetrate tissue paper was no small undertaking,  before ending up with anything that was remotely close to angel wings. I finished my ornament at recess, long after the other children had moved on to other activities and assignments. Even then, the little shrew sitting next to me remarked that my finished project looked more like a witch than an angel. Mom and Dad weren't particularly impressed when my mom opened the gift,  but my mom says I'll understand more fully why they value the ornament to the degree that they do, and what it taught them about seemingly inconsequential interactions between parents children and the worth of a gift from the heart when, God willing,  I have a child or two of my own.

Relatives arrived at our house bearing gifts and Christmas dinner, which my mom and I picked at and everyone else ate. That night when my mom came upstairs to put me to bed, I clung to her as she hugged me good night. Prying my fingers off her body would have taken more strength than she possessed. She carried me (I don't know where she found the energy, even as light as I was) to her bed and lay down with me attached to her, and I slept in my parents' bed that night. Given the bombshell that I'd dropped earlier in the day, Dad wouldn't exactly have gotten any action even if my mom hadn't been fighting  leukemia.
A nasty  strain of the  flu was circulating, and my mom and I both came down with it. Each of us developed pneumonia as a complication of the flu and had to be hospitalized. My mom was there for more than two months. I was in a hospital in California for about three weeks, until I was stable enough to be air-transported to Florida, where I stayed for the next ten weeks or so with my dad's best friend, an MD, and his wife, a pediatric nurse practitioner turned stay-at-home mom, who took excellent care of me.
We're now months from the thirteenth anniversary of the bone marrow donation. It hasn't been an entirely rock-free path to get us to here from there, but my mom is thriving, with no sign of any return of the leukemia that threatened to take her life thirteen years ago, and I do not in the least miss the bone marrow that it took to keep her here.


  1. Awesome!! You have led quite the life for someone so young. My brother had a bone marrow transplant last year for multiple myeloma. Transplants do save lives!!! He is now cancer free as well. Best to your amazing family.

  2. That's an amazing story, Alexis. All I ever gave my mom was heartburn... ;-)

    That's not true, really. A couple of weeks ago, she called me to thank me for the CD I made for her of some of my recordings. She said they'd made her cry and she'd really needed to, since she hadn't since my dad died last month. In my 42 years of life, I don't remember my mom ever sounding prouder, though. It was really something.

    Your gift to your mom is incredible. While I understand why she wouldn't want to put you through the donation process, it probably didn't occur to her at the time that your donation hurt much less than growing up without her in your life would have. I'm glad she's healthy now. Seems you are destined to save lives.

    1. My next post replies to part of your reply. Best of luck to your brother.

  3. That was my dad's point; that no amount of pain the procedure might have put me or Matthew through (he would've been the second donor had another donation been needed) would have come close to the agony of growing up without our mother. She just wasn't thinking clearly.

    It's great that your mother is so appreciative of your CD. The best gifts aren't usually what you buy for someone., The idea that it allowed herself to release her emotions as she needed to is very touching..

    1. Alexis, if you even knew... I had to listen to that phone message a few times. I could tell she'd been crying and she was just gushing about how much she loved it. And she asked me to make another.

      My mom did not know I could sing until I was 18 and even after that, I never did it much in front of her because she can be very critical. That, and my dad was always wanting to be the "star". One time, I gave her a CD of a choir I was in and she didn't like it and told me so. Having listened to it later, I agreed with her.

      My mom is not an overly sentimental or emotional person (though I am... probably got it from my dad). So when she said she loved it, I knew it wasn't bull. And I think maybe she sees me differently now.

      I'm guessing from your story, you had a similar experience, only at a much younger age than I did. Your mom sees you differently than she might have. I think you have great things in store.

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