We are finally in Maintenance! That is wonderful because it means we can do a few more "normal" things. Jordyn won't have to be as isolated, and that will be really nice. The reason for this is because her immune system is supposed to stay in the range where it can fight off infection better, where her last chemo treatments severely dropped her ANC (Immune System)and made her more likely to catch something if she was anywhere near someone with an illness. She will still have to go to Clinic or the Emergency Room every time she gets a fever though, and will still be hospitalized if her counts are low and she has a fever which could happen because of low counts or from an illness.
I am actually kind of nervous for this phase because even though everyone says it is easier, I don't know what exactly to expect, and it lasts A LOT longer than the other phases, and she has to take WAY more pills, including a daily chemo pill, 5 days a month of steroids, and a super high dose of another chemo once a week, as well as going in once a month for chemo, and every three months for a lumbar puncture. So, I am hopeful that she handles this phase of treatment well.
I also think it will be a bit nerve racking taking her out in public again because I am now a germaphobic person. Every time someone coughs, sniffles, or sneezes I panic a bit inside because you never know what kind of infection the person may have and certain infections can be deadly to my daughter if not caught soon enough. Hopefully with spring coming up, we will be able to continue to keep her from getting sick and keep her out of the hospital. Fingers crossed.
Jordyn's first day in maintenance didn't exactly start out very well... She had really wanted to bring a little red purse with her jewelry in it to clinic, and we forgot it. She was way more upset about it than she ever usually would be. I think she has just been kind of down overall lately... I have been noticing that she doesn't smile as much and she gets cranky more often. She is feeling some of the impact of all that she has been through I think. This is the third time in treatment that she has been pretty depressed. The first time she quite talking for 2 weeks, the second time was in Delayed intensification when she couldn't stop throwing up and feeling miserable. She seems to be handling her downs better and better, but it is still so sad to see her so unhappy... She was mad at me for the first time since she was at the start of treatment.
This is when we first go to our room in clinic yesterday... She was hiding because she was sad and kind of mad too.
Most of the time she was like this, so I couldn't see any of her face.
It took some convincing to talk her into taking her jacket and shoes off to get her vitals...
She took her jacket off...
And she warmed up a little and started feeling a little better...
And then she actually looked at me.
We finished clinic, and then she had to go to the RTU (Rapid Treatment Unit -I think anyway...) and she was kind of upset again. She is really not too fond of hospital naps.
She was really not happy about her spinal tap she was about to have...
I was able to get at least one smile out of her though!
Here she is under general anesthesia.
Her absolute FAVORITE part of her hospital visits is getting to play on the RTU's Ipad. She really does always wake up sad because it is gone. The child life specialist felt really bad and so she brought it to Jordyn when another kid had finished with it right before we left to go home. Jordyn was sooo happy!
Just waking up from anesthesia...
She wanted barbeque potato chips.
We started some seeds today. The kids loved taking turns pouring the water of the little pellets and watching them grow. I liked it because it helped them learn more how to take turns... ;)