My senior year of college, I needed an elective in order to graduate. Much to my husband’s dismay, I chose Quantum Mechanics. He thought something like “Weather” would be easier and would help my GPA. Well, the Quantum Mechanics professor was excellent, and the subject matter seemed interesting, so off I went into the mind boggling world of indeterminate states.
The class was heavy on math, and while I remember something about lambda and something else about transformations, not much else stuck except for the idea of Schrödinger’s cat. This poor cat is trapped in a box that has the potential to kill it and is, until you observe it, both alive and dead. It is the observation that causes the state to be defined. Until you open the lid, the cat is in both states.
Just last week, my three year old daughter’s oncologist emailed me to schedule a follow up for next week. Sarah’s tone is chipper and very helpful. She always makes sure to ask if there is additional bloodwork that other providers would like so that Steph doesn’t have to get any more “pokes” than necessary. I respond with all the requested information, and I let her know that I am looking forward to seeing her, because I truly am.
But inside, I fall apart.
Stephanie is our ninth child, my second daughter, and the sweetest little girl you’ve ever met. She has Down syndrome and was born with a congenital heart defect and a leukemia like blood condition called Transient Myeloproliferative Disorder (TMD). Her case of TMD was serious, and she needed chemotherapy to beat it. As a result of the TMD, severe jaundice, a hospital acquired infection, and chemotherapy, she almost died of liver failure when she was 10 days old. Thankfully, and by the grace of God, she survived and is thriving.
Depending on the article you read, she has a 25-33% chance of developing Acute Myeloid Leukemia (AML) by the age of five. Of course, this means that she has a 66-75% chance of NOT developing cancer, but something in my more primal self can’t seem to take comfort in the fact that the odds are in her favor.
You see, in the week before Stephanie’s bloodwork, similar to poor Schrödinger’s Cat, she both has cancer and does not have cancer. My imagination, mostly under control the rest of the time, runs wild. The possibility that she has “blasts” in her blood becomes very real, and everything that follows becomes a potential future. My sweet little girl is both healthy and sick in some quantum realm of possibility.
I’ve followed the experience of other children with Down syndrome and their parents through AML. Kids with Down syndrome are much more likely than the general population to get AML, but they are also much more likely to survive it. Survival means several rounds of chemotherapy, over half a year of hospitalization, the loss of hair. I have also seen children who have died - beautiful children, every bit as delightful as my Stephanie.
If she is diagnosed with cancer, treatment would begin with Stephanie and me taking up residence in the hospital. For my other children, it would mean less of me than they have even now. My local “children’s” hospital is not great on amenities, so would I travel to another hospital to get more child focused care? I’d be even farther away from the other ones, and you just can’t get that time back. We would probably go for the best care possible, so two and a half hours each way would be the norm.
Of course, every month so far, Stephanie has not had cancer. I’ve opened the lid of the box and found my sweet little girl, smiling, happy, and ready to play. There are no procedures, no difficult conversations with medical providers, no fights for her comfort or safety or security. The capricious nature of hospital policies and procedures is a frustration, but not a daily reality for me right now.
One poke every several months is all she will likely need until she is five, and then we will go to yearly bloodwork, like most other children with Down syndrome. The part of my brain that has access to reason and faith and logic can apprehend this truth and finds a lot of comfort in the reality that the odds are on her side.
All too frequently, however, the part of me that almost lost this sweet little girl just three years ago forgets the odds and the statistics and the trust in God and looks over the abyss of the potential outcome of this determinate state - my heart is filled with dread, and at the same time, I am relieved. She is still healthy. We haven’t had the blood work. All is well.
Frequent blood work is the way to beat this (potential) illness. The idea is that if things start developing we will nip them in the bud when they are easier to treat. There is no way around this periodic torture, and of course, I would’t have it any other way. I want what is best for her, despite the cost.
Even in the Down syndrome community, Steph’s situation is somewhat rare. TMD that needs chemotherapy is exceedingly rare. So common context even with my friends in the Down syndrome community is not often possible. Friends who share my Faith encourage me to trust in God, and I do. But, oh, that abyss is very, very deep.
Today, I am looking forward to Tuesday, the day after her appointment. I am trying to accept that pudding for brains is the best I can do right now. I’m focusing on trying to be kind, despite my anguish. The to-do list will be there after I have resolved this quantum question. The uncertainty is not forever.
Until the next time I have to open that box…
Thank you for cracking that window into your world. Praying for continued good news for your daughter and increasing peace for your family.
Wow, Susan, thank you for your honesty and vulnerability in writing something so personal. I can't pretend to have any basis for understanding what you and your family are going through, but I can join my fervent prayers with yours all the same. Courage to you, sister!