Sept. 21, 2015, 3:33 a.m.
We made our second visit to the ER this past Saturday, 9/19. Aila was just in the hospital from Thursday through Friday, but they let her go home with my father on Friday morning since the fever seemed to have remitted. But by Friday night, the fever was back and stayed in the range of 100-101 degrees Farhenheit most of the day Saturday. At about 4pm, we decided to call the emergency service, who directed us to come in to the ER. We got there at about 5pm and left at about 9pm, after a dose of intravenous antibiotics and some serious thought about whether it made sense to admit her again.
If you have a kid with ALL or probably any number of other conditions that compromise immunity, then you are probably familiar with the rules and protocols that circumscribe fever. Truthfully, it's on my list of things to do to get a textbook or two on Hematology and Immunology so I can understand more than I currently do, but suffice it to say that fever means something's not quite right. This fever is not so surprising, as her older brother Zander got a nasty cold last week after beginning preschool, and her younger brother Declan started down the same path shortly after. Both have since recovered, but Aila's fever, cough, and cold have persisted in a disturbing manner. UCSF has given us a protocol, which essentially involves our visiting the ER any time the fever is present. What's a bit disconcerting, and where we are again reminded of how far modern medicine has yet to go, is that although they want us to come in...they don't really know what to do with us once we're there. They gave her IV antibiotics yesterday, but they later told us that they didn't think this was bacterial and was instead viral because of her brothers' colds. In other words, it would simply have to run its course. Her neutrophils are actually at an okay level right now. If we had followed the "fever protocol" today, we would have been back at the ER by about noon. Maybe this was the right thing to do, but we didn't do it. She's resting peacefully in her bed right now, and we have plans for my father and I to take her again in the morning should the fever resurge. Last night, as we panicked, we googled things that could be going on. Meningitis, pneumonia....sweet dreams to have in our brains as we drifted off to sleep.
I don't feel sorry for us exactly--this is how life goes sometimes. I know that. I think I just feel sad. She was SO cute running after her brother and enjoying the sunshine and the park and the trails that we dragged her on. She and Zander were SO AMAZING to watch as he gave her instructions about how to play with certain toys or which toys she should run and get him while they were playing in the sandbox. By the time this whole horror plays itself out, she may be too old to chase Zander around the sandbox. I have to believe that the way they love each other will simply be different...maybe even better and more special. But I so miss watching them toddle around the yard and baby pool, telling each other what do to.
They used to fight with one another, when she took his toy or when he would not include her in a game. I miss those fights. These days our family fights in a different way, almost as though we were fighting with the universe. The scheduling and details involved in making sure all cancer visits are planned, all children are accounted for, Aila has someone with her at all times since she can't walk...well, it's a full-time job. Brian and I share this, but we often fight a ton about how best to make it work. I feel a tremendous pressure, from all sides, to leave my career behind to care for my daughter full-time. (While I respect that this might be the best solution for some women, I believe I would fall apart if this was what I chose.) This pressure leads to my trying to micro-manage--perhaps to prove that even as a working mother, I am still getting all of my children's needs met, even the one with cancer. Brian is frustrated with me (rightfully so, in many instances) because I probably do resent the fact that no one at work routinely asks him (as they do me) why he is there and not home caring for his daughter. And I talk endlessly about how difficult this is, about how we would be lost without my father, but then about how I can barely stand having the same arguments over and over again with my father that I did when I was young. I think Brian probably has no idea what to say, as he came from a very different family and learned to communicate in a very different way. He's used to my "emotion" at this point in our relationship, but I bet if you got him alone behind closed doors, he'd admit that he was and is always overwhelmed by it.
Zander fights too, although it's usually unclear why or with whom he's fighting these days. He really doesn't fight with Aila anymore, and in fact he barely interacts with her. This morning, he kind of had a huge existential fight with the universe. This was ostensibly about our not being able to watch his 40th episode of Dragon Tales in a row on the TV ("I want you turn the TV on!!!! Now!!!!), but at the same time it wasn't about that at all. When we turned the TV off after he threw some soft plastic toy at us and told him definitively "NO!," he went out the back door (slamming it shut behind him) into the (fenced in) backyard and sat on the stoop. When I would come out to try to talk to him or help him, he would begin screaming at the very top of his very loud lungs. He's pissed off. This makes sense to me. This sucks, and he lost his best friend overnight. He likes Declan okay, but Declan is still more interested in making loud squealing noises and whacking various toys that are around him. Zander misses Sissy.
In conclusion, I will summarize some areas where we have found some dark humor during this past month and a half. The brevity of the list is directly related to the strain of the situation, but finding some laughter is important:
1. We used to worry about whether we were poisoning the kids by giving them tylenol or advil. In the last month and a half, Aila has taken six different chemotherapy drugs in addition to miralax, senna, ducosate, oxycodone, propofol, versed (yes, you read those right!), gabapentin, odansetron, and ranitidine. When Declan wakes up all pissed off these days because of his burgeoning teeth, we do not hesitate in giving him tylenol. Not a bit.
2. We used to worry about what the consequences would be of the kids eating too much sugar, fat, starch, etc. During 28 days of dexamethasone (the steroid), Aila demanded and ate only sausage, cheese, pizza, or pasta. She's still alive. While I continue to believe that healthy food is best, a little gluten or sugar probably won't kill our kids.
3. Sometimes, it's exactly the right thing when your two-year-old says, in no uncertain terms, that she wants "that guy to go away." Hospitals suck, Sissy, we agree.
4. Nurses like to say, when they are taking blood pressure of a small child, that it's "just a hug for your leg." It's not, nurse, it's a blood pressure cuff. She's smarter than you think.
If the list is a bit brief right now, it's because the laughing has been a bit hard to come by lately. But, we'll laugh, Ais, I promise. This isn't over.
We love you with all our heart, and we are committed to you. Fight.
Mom and Dad
Comments
Andri Bjornsson 9 years, 2 months ago
We are thinking of you and sending all of our love.
Link | ReplyJed B 9 years, 2 months ago
holding you all in the Light
Link | ReplyJenn Sabin 9 years, 2 months ago
You are in my thoughts and prayers. Love to you all.
Link | ReplyRindy Freimuth 9 years, 2 months ago
You're doing an amazing job, Vic, believe it. Someday, when ALL your sweet babies are running around, playing, laughing, whining, and fighting, you'll look back and say, "Well, that really f**cking sucked. But we made it!" Count the blessings you have. And count on the big one that's coming!! Love and prayers coming your way.
Link | ReplySandy Miller 9 years, 2 months ago
So glad to know your Dad is with you. As a grandparent, I know it makes him feel better too.Thank you for the update/view of your lives. We think of you often. Love and prayers.
Link | ReplyLaramie Duncan 9 years, 2 months ago
Whoa Vicky! It's nothing short of amazing that you you have the composure to write about what's happening, as it's happening. I remember something quite insightful that Andri once said, that he's often able to talk about the hard things AFTER the real difficulty has passed. I think that's true of most of us, most of the time. But here you are talking about the complexities of gender bias, family of origin dynamics, and your own family dynamics in the context of this challenge. That's really incredible. Full stop. I hope it's mostly caring that comes back your way, in the midst of all the other stuff swirling around, as it does.
Link | ReplyNo doubt this is going to help lots of people, and most importantly I hope it helps you too!!! Thanks and warm wishes from us.
Alexis Karris Bachik 9 years, 2 months ago
I am thinking of you and your family, Vicky, and sending an abundance of love your way. Your strength and honesty amaze me. No doubt, your plate is FULL and I am struck by all that you are managing. Thank you for sharing your story. Our thoughts are with you.
Link | Replydonna roybal 9 years, 2 months ago
You're amazing. You and Brian both. I miss you dearly and am sending you the best vibes ever for all of you. Thankfully you can still find humor in all of this, albeit for small moments, I'm sure. Hugs hugs hugs from myself and the boys.
Link | ReplyJanice Bellaire 9 years, 2 months ago
Vicky, Thank you for your blog. We and our church family and friends are praying for Aila, you, and your family. I am thankful that you do have a wonderful sense of humor, that you are sharing your frustrations, Zander's reactions to the changes in his sister and family life in general, etc. It has to be very hard on a little boy as well as you, your husband, and your dad. I believe that your blogging will help other families as they deal with a serious illness of a child or an adult family member.
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