Nov. 20, 2015, 1:56 a.m.
The absolutely insane thing is that I don't even know how many spinal taps Aila has had. One hypothesis is that that means I'm a terrible mother (Brian would say, "Of course you're going there first."). But honestly, even when I count backwards, I get confused. This is the first during Interim Maintenance. There were three during Consolidation. There were at least two during Induction, but she was under general anesthesia additional times when they did not access her cerebrospinal fluid, but rather drew bone marrow. I honestly don't remember, although I can detail every time I've been with her as she is put to sleep, both at Stanford and UCSF. I am horrified that this has become so commonplace that we no longer think it a major event when our 2-year-old is slated for general anesthesia.
Brian and I had a breakthrough as parents on Wednesday night, the night before today's spinal tap and subsequent chemo infusion. We decided that we as her parents, we need to be there for each and every infusion and spinal tap during Delayed Intensification. We decided this because we realized that, as her parents, we are actually the best humans to provide her love and comfort. That she really does calm down more when we are present. My father loves her, but we are her parents. Somehow she knows that. Brian took the day off and brought her today. And, during the upcoming 56+-day war of Delayed Intensification, we are committed to being by her side, either one or both of us. We realized that after we'd been in the hospital with her for a month in August, we felt very behind at work, like we needed to be present for some time to catch up a bit. But now, although in no way "caught up," we feel again that crystal clear feeling that being with our baby is much more important than anything we could be doing to carry on with our careers. Sorry Grandpa, but this is what our family needs.
You'd think after a spinal tap and chemo infusion, she'd want to rest. But instead she wanted to go with me to the store, to buy sausages and sushi, and then to a "new store," for cheese. She seemed confused why I kept asking her whether she was tired. She's sleeping as I write this next to Brian. Last time I checked, she is sweating, but she does not have any sign of a fever. Just the normal post-chemo sweats. We'll see how she fares in the upcoming weeks, as I do feel that these intrathecal (spinal) chemo infusions do a bit more harm than the intravenous ones. None are benign, but we are learning their relative impact.
No energy for a long post, but just a check-in. Survived another day, all of us. Victory in my books.
Fight and love, my Aila Muriel.
Comments
Angela Tana 9 years ago
I remember when Lucia was really sick with RSV at only two weeks old the hospital pushed me to do a spinal tap to rule out meningitis. My husbands father was back in Spain dying in the hospital and juan needed to fly back so I decided to do the pointless spinal tap (just in case). Juan didn't need any more surprises. I asked the doctor that was going to do the procedure "how many of these have you done?" And he stated "oh thousands". Then I asked have you any any complications from doing any of them and he said "never". Then I thought alright let's get this over with. Hearing those baby screams through the door was awful. My heart goes out to you Vicky.
Link | ReplyCyndi Durden 9 years ago
You are strong and she is lucky y
Link | ReplyTo have you both as parents. This shall pass and you will be in a better place and thoughts will be just memories. Praying for you and all of your family.. Sending love and positive energy your way..
Rindy Freimuth 9 years ago
Please remember what Aila is going through now will heal her. Someday this will all be a distant and rather fuzzy memory! Sending positive thought and energy to you and your sweet girl. Love you Vic <3
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