Yesterday was a BIG day for Kayleigh and our family! Kayleigh is now officially in phase 5, Maintenance. This phase began with a lumbar puncture, chemo injected into her spine, and chemo through her port. She also had her monthly dose of IV antibiotics, Pantamodine. Kayleigh did well just as she usually does! She had quite a bit of nausea and got sick in the car on the way home, but she was fine once we got there and the rest of the evening.
I would like to thank the Almost Home staff and Dr. D for keeping things moving yesterday. We're usually there 8:30 (sometimes earlier) until at least 4:00 and Kayleigh was released at 2:30. :) I think this was record time for us! Everyone is wonderful at Children's Medical Center. They're all genuinely kind and caring. Kayleigh's favorite nurses always seem to find time to stop by even if they're not her nurse for the day or even on the same floor. I do know that she is in very good hands.
Wow, though! I have to say that my head has been swimming ever since we left. Kayleigh entering phase 5, Maintenance, is exciting, but also very scary due to the parent responsibility. This part of the treatment road map will last 18 to 20 months. It will include lumbar punctures every three months, chemotherapy through her port once a month, and three medications at home (+ if she needs others to help with the side effects). Each lumbar puncture signifies a new part of the phase. My head is swimming because of the 3 at home meds, all chemotherapy. One medication she gets 5 days per month, that's the lovely steroid. Another she gets once a week and involves her taking 8 pills, Methotrexate, which her counts are too low to begin, next Friday is tentative start date. The last one is a daily chemo pill and a half of 6MP. The thing is each one has to be taken at a certain time, some with food, others without. Also, since her counts are low, we're not to give the full dose of 6MP until given permission. We're not to follow the labels on the bottles, but go by the notes I took, which I really hope were thorough. I do try to be thorough and Jason remembers some things from memory. Kayleigh's medication is just so important and I fear missing a dose or giving the wrong one at the wrong time. I created a very handy calendar last night with each medication written on the day and time it should be taken and a place to check it off. I typed my thorough notes at the bottom. It actually looked pretty impressive! A calendar like this will be taped on the side of our kitchen cabinet next to our sink for the next year and a half or more. I'm hoping it will work and help keep me and Jason on top of things. I will do my best to stay positive and help Kayleigh get through this. She's done so well so far, and really so have I, better than I thought I would handle all of this (aside from a few meltdowns when I'm alone). Our test has been and will continue to be in God's hands. I think I always knew the strength in prayer, but now know firsthand just how powerful prayers are. In fact, I finally found time to read a book yesterday while at the hospital. It was written by the parents of a little girl named Micah. Early on after Kayleigh's diagnosis, she received a Micah's Hope backpack filled with things to bring her some happiness. In the backpack was the book. The book includes Bible passages and prayers, along with the journey Micah's parents went through with her. The book was very inspirational and gave me something to relate to. It reminded me just how important and powerful God and prayers are. Thank you to Micah and her parents for sharing their journey and inspiration.
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