Day 22 – “Intense Phase”
In support of
Kyla
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Kyla
Day 22 – “Intense Phase”
Hello all,
This phase of treatment sucks…
Sigh… it’s honestly been really crazy. They were not lying when they said this phase would be a lot. We are at the hospital every other day. One week, we were there every single day (Sunday to Sunday) either getting labs done, blood or platelet transfusions, chemo, or LP (lumbar puncture) procedures.
Thursdays are her chemo and procedure days. We have to be at the hospital early in the morning and then head over to the infusion clinic for more chemo afterwards. Long days for Kyla and just so much on her body.
This phase of treatment has been extremely hard for her. And it’s been painful for us to watch. It hurts our souls seeing her not be herself. She has always hated being sick. There’s been a lot of nausea, vomiting, low energy, and just feeling uncomfortable at night. So far, she has had 3 blood transfusions and 3 platelet transfusions, and we are anticipating more at the end of this week and next week as well. As her oncology team says, this is “as expected” because the chemo and oral chemo medications will cause her numbers to drop.
It’s honestly crazy how much chemo medicine she has to take during this phase. She’s getting chemo in her spine, through her IV port, and then a hella oral chemo meds. The side effects are definitely in full effect. Yes, they have medicines to help with the chemo side effects, but those medicines also come with side effects. So it’s just a constant cycle…
One thing that has been super helpful is Kyla getting a wheelchair. It made such a huge difference. Before, even getting from the car to the clinic would leave her out of breath and exhausted. Now we can wheel her everywhere, which helps so much.
Her oncology team has been incredible throughout this entire process. We have access to them 24/7. Last weekend alone, we called them 4 times at night. We felt bad, but they always remind us that if she is showing concerning symptoms, we need to call right away.
On Monday, we were at the clinic because none of the nausea medications were working for Kyla. They ended up giving her something stronger along with fluids, and it was the first time in a while that she was awake, talking, and just having conversations with us again.
This Tuesday and Wednesday were also the first days in weeks where she was able to enjoy her meals without feeling nauseous or vomiting afterward.
Otherwise, she’s been extremely tired. Wake up, eat, then sleep. During the induction phase (the first phase of treatment), she was eating like crazy and spending a lot of her free time reading, drawing, or on FaceTime with her friends. This phase has been the complete opposite. Right now, she can only really walk from her bedroom to the bathroom, and even that makes her exhausted.
Many people have asked how Drew is doing…
Drew is doing great. He’s such a thoughtful helper and is always thinking about Kyla. He would come home from school and say, “Someone gave me chocolate, but I saved it for Kyla.” One day he came home from CCD with two apple juices and said, “I got these for Kyla because since she’s been sick, she drinks a lot of apple juice.”
He knows Kyla is sick, so he tries to help as much as possible, but he also avoids getting too close because he is scared of getting her sick. We are so grateful for Free’s parents for helping Drew stay on his normal weekly routine. I think he will ask more questions once he sees Kyla with no hair.
Also…
Huge shoutout to Kyla’s middle school, BRS. They have been soooo supportive and understanding throughout her treatment. She is so lucky to have such wonderful teachers and staff who are always thinking of her. Every week they have brought something new… letters, birthday cards, candy left on our doorstep, and little reminders that they are thinking about her.
Thank you!
Kyla had an amazing two years at BRS with the most supportive teachers helping her grow into the next stage of life. You all will truly be missed. Hopefully, Kyla will be able to make it to her 8th-grade promotion, but honestly, we are taking it one day at a time.
Tomorrow will be Day 22 of this “intense phase,” and she has one more LP next week. Hopefully, she will be able to start Part 2 of Consolidation afterward, but she may need a break because her labs(blood work) are currently so low. Kyla’s ANC (the cells that help fight infection) is currently at 0. She is neutropenic right now, which means her body cannot fight infections at the moment. So unfortunately, no visitors until her ANC is over 1,000. We check this weekly.
If you are still reading this long ass post.. thank you for always thinking of Kyla!
We are celebrating the small wins with her every single day… and continuing to take it day by day. 🧡
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