We have officially started the Maintenance phase of chemo. Yesterday we went back to the clinic for chemo. It was an early morning, we had to leave by 7:30AM, which includes getting everyone ready, packing up a days worth of stuff to do and food to eat, and dropping off Nathan and Benson at a friend's house. Lily wanted to come with us this time.
We got there right on time. Nurse Anna came and got us to go back and access Kayla's port. She is an old pro at this now. As long as she has her smelly chapstick close to her nose and a sucker in her mouth, she is good. :)
We met with Dr. Meeker this week. I told him how Kayla's dental surgery went and reminded him that I was the one he talked to at 2:30AM the other day. She has been doing fine ever since then--I am so glad we didn't have to take her in to the hospital and that she didn't get any worse.
Kayla's blood counts looked good to go on with chemo, so we went ahead with everything.
We all got settled into the chemo suite. Lily and Kayla colored for a little bit. Then Miss Stephanie came in with all of her fun musical instruments. They had fun playing with her. We watched a little bit of Snow White and colored some more.
It was such a nice day yesterday and there is a great patio area off of the chemo suite where we can go outside. So we did! The girls were out there a lot. Miss Jenn (with Child Life) came and had lots of fun things to do. Lily had fun practicing her jump rope.
Kayla had fun coloring outside and playing My Little Pony with Miss Kim (with Child Life)
The girls each filled out a Father's Day sheet while we were there. They wrote out their answers for different questions about their dad. I am excited for him to see it.....they are pretty funny!
There was a lady out in the lobby who had sewing projects for the kids. Lily and Kayla both helped sew a pillow case to bring home. They absolutely love them. This lady comes in every other month to volunteer. There are so many people who bring things in for the kids and who volunteer. It is really neat to see all of it. It's still hard to believe that we are on the receiving end of all of this...
Nurse Meredith had a very cool trick that she showed us. She had some dry ice that she put in a styrofoam cup. She added water, which created a lot of steam, and then put a rubber glove over the top. The glove filled up with steam until it was standing straight up and it eventually popped off the cup. The girls really liked it and had her do it two more times!
Here are their finished pillow cases.
So, while we were inside, I heard Dr. Meeker's nurse, Erika, come in and tell the nurse administering the meds that Kayla's orders were in and what she was getting--which included Pentamidine. I was a little confused by this because she just got Pentamidine a few weeks ago (it hadn't been a month yet) and last time we had to come in on a separate day because her doctor does not like to give it on the same day as Zofran. Also, they just hadn't told me they were giving it to her today (technically, yesterday). I kind of like to know what she is getting...
I asked the nurse about it. She told me that they are giving her the Pentamidine a week early (I should have asked why, I know, because really, we will be in next week, too) and that it is just a doctor preference thing about giving it with Zofran or preferring not to. Dr. Hansen does not like to give them on the same day because of some rare risks of serious heart side effects. Dr. Meeker is perfectly comfortable giving them on the same day. So, it just depends on the doctor that we see that day. I guess I wasn't totally happy about this because all along I have been told about not mixing the two and all of the sudden, it is okay. I really wish we could just see Kayla's doctor each week!
Another thing I am a little worried about is that we were scheduled to come back in on Tuesday next week. Yesterday was Wednesday, which is already off from our usual Thursday that we have been doing all along. But now, she won't even have a full week in between treatments. I really hope that her blood counts have enough time to come up enough to be ready for another dose of chemo on Tuesday. If they aren't then that will put us back a week because they won't be able to give her a treatment. She has been so close to the line lately that I worry that she won't quite make it back to that point.
I have noticed over the last week or two that Kayla's energy seems to be going down just a little. She is wiped out by the end of the day and sometimes during the day she gets really tired. It probably doesn't help that I am trying to keep the other kids busy by going to the park everyday and doing other summer time activities. She is doing great keeping up with everything, but I can tell it is starting to wear her out (it's wearing me out!). It makes me think that we still have such a long way to go and I hope that she can make it through all of this while having a "normal" life.
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