The five year old girl we met today also has a pilocytic astrocytoma and it was really nice to talk to her mom. This is her second round of chemo. She was diagnosed at 15 months and after the first round of chemo her tumor went into remission for a year. It started growing again late last year. Hopefully the second round of chemo will knock it out. That seems to be the pattern from the majority of families I have spoken with.
The hardest part of the day for the parents and kids is putting the needle in the port at the beginning of the day and taking it out at the end. That is pretty excruciating. Stella screams, kicks, cries and basically is completely terrified during that process, and all the while I am holding her down and physically restraining her. I will admit that I have a hard time not bawling myself during these times. I don't see it getting any easier in the future, although I really hope it does! The five year old girl who has been through almost two years of chemo in total was also terrified when the nurse was ready to take her port out and cried really hard. It was difficult to watch and I got a bit teary eyed. These kids go through so much.
I am hoping to avoid Stella getting sick tonight. I gave her some Zofran as soon as we got home, and gave her more right before bed. Hopefully that will reduce her nausea. We shall see!
** Quick 5:30 a.m. update - the Zofran seems to have done the trick! I just checked on Stella and she is still asleep - no vomiting or waking up all night. :-) **
Having fun decorating a princess magnet. :-) Stella had two magnets, but gave one to her new friend who was also getting chemo. They both had a lot of fun with this.
She is becoming a pro at getting her vitals checked! She doesn't even need to sit on my lap for these things anymore, which is huge progress.
And I have to add a cute one of Stella and Rob from our outing at the bowling alley yesterday. We are trying to keep things as normal as possible for all three kiddos during this time, and especially while Stella is feeling good. Rob is doing a great job of making sure all three kids are having a lot of fun. He is also making sure the boys get to their sports practices when Stella and I are at her chemo treatment.
1 comment:
You are such a brave little girl. Hoping the Zofram does the trick tonight! So glad Stella was able to share her toys and brighten the day for a few other sick kiddos as well. Love you both. Stay strong. xo
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