Oct. 31, 2015, 1:03 a.m.
It's Friday, and somehow we made it through another very hard week. I haven't written all week, but that's only because we had no time! My last post was last Friday, when we took the kids to a Halloween party at Brian's work in San Francisco. Aila had had a chemotherapy infusion earlier in the week, but she was in good spirits at the party. We didn't think much of her playing with the other kids and legoes at Pinterest. And maybe we should have...
I think we've begun at this point to classify days in terms of "good Aila days" and "bad Aila days." Saturday last week was a good day, with tons of laughing and happiness. Sunday was a very bad day, and Aila screamed in pain almost all day long. She kept saying that her "butt hurt," so we assumed that it was more GI-related side effects. But after she ate and pooped with ease, I began to suspect that it may be more neuropathic. When I gave her upper legs and thighs a deep massage, she breathed in relief. Vincristine is known to cause neuropathic pain, and I think my tiny baby was experiencing that on Sunday.
On Monday, I left her in the early afternoon and headed for work. She was playing a matching game with Viviana, smiling and flapping her arms with joy. It seemed like the stars were alligned for a smooth week. At about 5pm, Viviana called me. She usually texts if there's news, so I knew something was wrong. She said that Aila seemed warm, so she took her temperature. Aila had a fever of close to 102 degrees. I came home a couple hours later, and Brian and I talked about our options. Officially, we should have already called our doctors. But knowing that her fever would warrant an immediate trip to the ER, we were (perhaps naiively) hoping that the fever would remit, and we could go on with our lives. We fed the kids, I went for a quick run, and we packed the hospital sacks. We took her temperature again, and this time it was closer to 103 degrees. I held her in my lap in our rocking chair while Brian got ready to head up to UCSF.
Aila was hospitalized for the third time since our initial month-long hospitalization at LPCH, from Monday through Wednesday. Her fever didn't remit by Wednesday (in fact, it was closer to 104), but they found nothing compelling in her blood cultures apparently to warrant keeping us there. Brian stayed with her both nights, since Pinterest is about a 7-minute walk from UCSF Benioff. I drove up and worked from Benioff on Tuesday, and my father spent the day with her on Wednesday. I taught on Wednesday morning, and I had intrusive thoughts throughout my lecture that involved my receiving a phone call from Brian telling me that Aila was dead. Students were complaining about their grades and about their upcoming final, and I was thining about my daughter's death.
She wasn't dead, as it turned out. Instead, her mother is just reeling from the traumatic realization that it's been nearly three months since her diagnosis, and there is no end in sight to the chaos.
On Thursday, my father took her back to UCSF Benioff for her chemotherapy infusion. She was tired that night, and the fever was back. But by early Friday morning, it had remitted once again and has not returned.
I don't even know what to say at this point. This is really just awful. Is it really going to get better, like everyone says? During our days, wherever we are, Brian and I keep on exchanging texts about how awful it is. When she's sick with a fever, I feel dread and horror. When she's getting a chemotherapy infusion, I feel disgust and horror. I know she has to receive it, but as her mother I can't help but feel sick to my stomach when I think about our injecting poison into her veins---to kill her cancer, yes---but also to potentially generate damaging side effects much later in her life. They've accessed her port so many times in the past two weeks that it is swollen and bruised. This week was another where she is too weary to try to walk or bear weight. Aila hasn't walked in twelve weeks. When will my sweet girl walk?
Tonight, we got really mad at my father for taking her to McDonalds, since her little stomach can't really process heavy foods. But then, he told us that the manager had asked whether she was getting chemotherapy. When he said she was, he admitted that his wife had recently died after a long treatment for cancer, and that her hair had faded away in a similar fashion. He then went to the back and got Aila a whole set of Peanuts figurines, which she loves. No one wants her to suffer, not the McDonalds' manager, not her grandfather, and certainly not her parents.
Admittedly, today, I'm feeling defeated. But, I'll go to bed in a bit and get up tomorrow, hopefully feeling new hope and resiliency. We're bone tired, and we've been that tired for three months. I kind of wonder how long we can keep it up, but then we have no real other option.
Fight. We love you so much, our beautiful baby warrior.
Comments
Angela Tana 9 years, 1 month ago
Vicky
Link | ReplyA couple of years ago were rough for me and Juan. Paolo ended up being diagnosed with asthma after many completely sleepless nights of dealing with him struggling to breathe. It didn't occur to me that it was asthma because it was always associated with a cold. Watching him gag and struggle to breathe, vomit mucus plugs, and look so sick regularly really turned me into a paranoid mother. I was always afraid to bring him anywhere because a simple cold on a regular child would ultimately translate into a month long battle with bronchitis, pneumonia, and sinus/ear infections. He also gets ridiculously high fevers...he's had several 105 fevers. One time his fever lasted 7 days.
It's rough being a mother and honestly if I knew what I know now I'm not sure if I would of had them. It's not the extra work you have to do it's the pain that you will have to deal with. Witnessing a child in pain and being helpless is hell on earth.
I know that what you are going through is so much more intense then what I've dealt with but I want you to know that you are far from alone when it comes to growing fear of taking your sick child anywhere. I've become the sneeze/cough patrol mom. I tell my son to stay far away from kids that are sick!
Paolo is going much better now due to a daily regimen but my fear of him getting sick hadn't really gone away.
I'm hoping you are experiencing the darkest of days right now and things look up.
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