Yesterday began with Lily coming in to our bedroom saying that she couldn't go to school. Uh-oh. She was starting to get a little cold. . . but I told her that she had to go to school. Kayla had clinic and Daddy had work and I couldn't take her with us or to someone else's house. She got ready, but when the bus came she would not go out the door! I was just a little frustrated. ;) I had to leave by 8AM and Bryson had to be at the courthouse early, too. Fortunately, Bryson had just enough time to run Lily out to school (which is like 15 minutes away). So, the rest of us hopped in the car, dropped Benson off at another friend's house and headed to the clinic.
At the clinic, Kayla got checked in, accessed, and we met with Marnie. We got to go to a new section that they have been doing construction on. It is really nice! When we met with Marnie, she hadn't looked at Kayla's MRI results, so she quickly looked over them. She told me that they look good. There was no metabolic activity (which means that nothing is growing) and that her optic nerves were thicker (when I asked her what this meant. . . her answer didn't make sense to me). But, there is a Brain Tumor Conference on Thursday, so next week we will get some more specific results of what they (a whole bunch of different doctors, nurses, teachers, etc.) think.
I also talked to Marnie about other possible ways to help with Kayla's nausea, since she is so stubborn about taking zofran. We discussed meeting with an acupuncturist ( just to learn pressure points, I don't think Kayla would go for the real thing ), leaving her port in and having home health come in to give her a dose of IV zofran through it, a patch- but she is too little for it, or just staying at the clinic for 6 hours after she gets her first dose. Since we are there for about six hours anyway, I asked if they could give Kayla zofran as soon as she is accessed, then it wouldn't be as much wait time. We are going to try that next week.
Our time in the chemo suite was nice. Kayla watched a movie, played with the dollhouse again, did music with Miss Stephanie, worked on a weaving project with Miss Jenn, and Sadie took a nice long nap. So, I was able to finish reading my book and visit a little with some of the nurses and another mom there.
We got done at about 3:15PM and headed home. My visiting teacher brought dinner (thanks!) and after a hour or so of frustrating coaxing, I got Kayla to take zofran in some hot chocolate. YAY! This meant that I would have a much better chance of getting some decent sleep (Benson has been waking up almost every night lately wanting to read a book)!
Kayla did make it until almost 7AM. She threw up a few times this morning, but not too much and she refused to take any more "hot chocolate" or anything. She would rather throw up--even after telling me how nice it was to sleep all night without throwing up. What a confusing child! But it ended up being a very nice "day after clinic" day. These are usually the days I dread.
Came across your daughter's story when I was looking for Ezekiel bread recipes on your Self-Reliance blog... Anyhow, I myself have had an optic glioma that required treatment. I went through 28 rounds of radiation therapy (only used because I was 19 years old at the time), so while I can't relate to the battles with chemo, I can say I know how scary it all is but to definitely have hope! I have finally progressed to check ups every other year, but still live with the vision loss and slight pressure behind the eye every day. Prayers to your family!
ReplyDeleteWow, I have lots of questions for you! How old are you now? Is your optic glioma completely gone? Did you get diagnosed with neurofibromatosis, also? I haven't ever talked to anyone with the same condition. These are just a few I have to start with, I would really appreciate anything you had to share. Thanks!
DeleteI am now 24, I was diagnosed in 2008. I did not get diagnosed with neurofibromatosis, but much like you- was led to believe I had it for a while which is quite frightening. I underwent treatment at the Mayo clinic, and only received radiation because I was an older patient. My case was considered even more strange than normal because the tumor is usually found in younger patients, like your daughter. My vision was originally 20/15, then declined to 20/250 when I could actually see well enough to distinguish anything when I was first diagnosed. After treatments I am now medically considered to have 20/20 vision(!!!) but in reality it is like I am looking through a veil in the affected eye, I can make things out well enough but they are still fuzzy. Feel free to email me if you have that capability? I would love to chat with you more and talk about anything. I realize there's a lot you can't understand about the condition since your daughter is so young and can't explain things, but I feel I could help you understand things a bit better perhaps? It is a scary time, but be thankful because it could be so much worse!
DeleteI would love to hear your story and anything more you would like to share. Please email me: jamieperkins1@yahoo.com.
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