Dec. 17, 2015, 1:04 a.m.
Yesterday, Aila Muriel and I made it through a very long day together. Brian and I packed a bag for her the night before, with diapers, clothes, toys, stuffed animals, and snacks for after her spinal tap. I warned her the night before that she wasn't going to be able to eat in the morning before her "walking doctor" or until after we got to UCSF. When we got up in the morning, she never even asked for food. We loaded everything into the 4runner and headed to San Mateo for her physical therapy. She walked like a champion, and Katie was impressed with Aila's new skill. Aila was very proud, and so was I.
It took us about thirty minutes to get up to San Francisco, and we swung by Pinterest to grab Brian. Our plan was for him to stay with Aila for 30 minutes while I got out for a run. But when we got to the hospital, someone called from UCSF asking when we would be there while we were in the garage parking. So we went up to check Aila in, and her Fellow Oncologist was there waiting for us. Brian and I had had a series of frustrating email and phone conversations with various doctors the previous Friday. Based on something Brian had said about Aila's walking in an email, they had on their own decided (and communicated to us via email) to give Aila a 1/2-dose of vincristine, a staple drug in her regimen. But then, almost as though she recognized her parents' fear at the idea of an attenuated dose of chemotherapy, Aila walked in earnest this past weekend. She walked in a public place (Whole Foods) for the first time since August. She walked around the house. She walked and walked and walked. We told them via email and even sent them a video, but apparently they still didn't believe us. So today, Dr. Lee wanted us to make Aila walk on command. She was starving (it was about 1pm at this point, and she'd had no food because of the impending spinal tap and gone to physical therapy) and scared, since she knew she was in the hospital and little good comes of these trips. We asked her to walk, and she initially said no. But then, I joked with her and ran away, telling her to chase me. And she did, showing off her agility. Dr. Lee agreed to a full dose of vincristine.
Brian left to return to work, and it was time for her spinal tap. She and I were both crying as they put a mask over her face and gassed her to sleep for her intrathecal methotrexate. After it was over, I waited for her to wake up from her anesthesia, and when she did, she finally ate some peanut butter sandwich and drank some water. She asked for a cookie as we headed next across the hospital buildings for her infusions, so we stopped at the coffee cart and bought cookies and a muffin that she liked. When we went upstairs and sat waiting for the doctor in the exam room, she held her muffin rather than eating it, as it seemed to provide her comfort.
Dr. Lee came in first, and our interaction with her was pleasant and supportive. Aila was exhausted and trying to fall asleep on my chest. I told Dr. Lee that Aila had developed a lot of fears lately...of lights, of sounds...and that she was regularly having a very hard time falling asleep. I asked about ativan, since they had given it to her regularly at LPCH. Dr. Lee left, and her attending, Dr. Robbins, came in. I felt immediately defensive of both myself and Aila. She told me that no one knew the impact of a drug like ativan "on the brain of a child," that it was "unusual" for a child her age to not fall asleep naturally, and that instead I should consider putting a mattress next to our bed and dangling my arm over the side to comfort her.
I was exhausted, and my baby was sleeping by then on me. I had very little fight left in me at the time. But later, with Brian, I marveled at the fact that a 60+-year old medical doctor, trained in biology and anatomy, had the audacity to offer me advice on how and where to put my child to sleep. She presumably did so not because I asked her for any such advice, but rather because she assumed I would want it. She didn't ask, so of course she had no idea that I have an active child psychology practice myself and am reasonably well versed in behavioral strategies associated with sleep and children. Not to mention the fact that I am a mother of three, but she I doubt knew about that either. Instead, she presumed that I would want her advice. I doubt I did a very good job hiding my disgust, since we had already been there for so many hours and I was dreading the infusions yet to come. The sad thing is that each time an interaction like this happens, I become more and more wary of sharing my true feelings with Aila's doctors. In this case, those feelings were fear and desperation, after watching our daughter day after day struggle with a new fear of the world and an inability to rest her weary eyes.
Before long, Aila and I were led into an infusion room and left to wait. We both briefly fell asleep, arm in arm, I think, while we waited. Before too long, the nurse came in with a bag of vincristine and a syringe of doxorubicin, the red drug. Aila opened and closed her eyes into and out of sleep, as first the port (which had been accessed during the spinal tap) was heparinized, the vincristine, and then finally the doxorubicin, infused. I stared as the doxorubicin flowed into her, thinking that it looked like benadryl..or maybe red koolaid..draining into her heart. I felt that same sinking feeling that I do on all chemotherapy days. They gave her a toy when we left the clinic at about 6pm. When we got home, Zander lost his marbles because Sissy had gotten a "present." We gave Aila her first dose of dexamethasone (a steroid that she had during Induction) before she fell asleep. All I could do was put my head in my hands and grieve.
A day later, she looks sallow, sullen, and painfully pale. Our nanny told us that she slept much of today. Tonight, she demanded pasta and cheese and pasta and cheese, reminding us that we would not escape the wrath of the steroid by any means. When we put her to bed and returned to the front of the house to get Zander ready for bed (as we generally do), she cried relentlessly to us, saying "I scared," and "I want you to seep wit me."
Around the Thanksgiving table this year with the Hwangs, we shared our gratitudes. Brian said that he was grateful that Aila was not dead. So am I, of course. But I'm frustrated with our medical system and its inane hierarchy and reductive philosophies. Believe me, I'm grateful that Brian and I are privileged enough to have health care, health insurance, and are able to choose our hospitals and doctors. I guess I even have to be grateful for her chemotherapy, since that is the only way anyone knows how to even try to keep her alive. Fifty years ago, Aila would have died in August. But to be clear, no one has "cured" childhood cancer. A cure that entails this amount of suffering for a baby and a family is not a cure but rather an imperfect treatment with reasonably good long-term success and an unknown, life-long possibilty of relapse. Truly, I'd rather that someone had given me this information early on so we could better manage our expectations for the leukemia endurance race. Telling me that my daughter has an 80-90% chance of being cured and surviving still means, (a) that there is a 10-20% chance that she'll die, and (b) leaves me blindsided when I realize that the "cure" is so awful and relentlessly miserable.
So four and a half months into leukemia, I'm changing my sign-off. Thanks to wisdom shared by friends and our own evolution as cancer parents, we understand that this is really, truly, an endurance race and not a simple fight to be quickly fought and won.
So endure, baby Aila Muriel. We're here, always, and will keep on trying to get you ativan or anything else that we think might bring you even a brief moment of peace. We love you so much.
Comments
Gabi 8 years, 11 months ago
This is so sucky (for lack of a better term). Why do we have a system that makes it worse before it gets better? One has to wonder if the doctors who developed these drugs have ever gone through this themselves? Perhaps then they would realize the impact on the children and their families.... Praying for you.
Link | ReplyDawn Bender 8 years, 11 months ago
Hi Vicky. Back in elementary/middle school I was Dawn Blanchette. I just finished reading this blog from beginning to end. It made me cry in its beautiful honesty. I have 2 wonderful kids myself and cancer in either one of them has always been a secret fear of mine. But here you are working through it with one of yours. I'm amazed at your strength - you may not feel strong now but you're still pushing through and advocating for your sweet daughter. I understand you may not believe in God but while you're fighting ALL with Aila I'll be praying for you and your family.
Link | Replyhk 8 years, 11 months ago
You are making me count my blessings Vicky. I wish I could do something to help you and the family. I'll send as much positive energy as positive from the east coast, the stars, the moon as I can conjure up.
Link | ReplyLove,
HK
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