Chemo Round 2

Jaylie is doing great! We have been here in the hospital since yesterday. We went to the clinic first to access her port and do labs. Her counts are pretty good, her hemoglobin was low and she is considered anemic, but its not low enough to need a transfusion yet. When we got settled into our room yesterday they started her on fluids for a couple hours and had to test her pee until it got where it needed to be to start the chemo. They gave her dexamethasone (a steroid) and zofran (anti nausea) and then started the chemo. She had the chemo cisplatin from 5-11 last night and did great. It is the worst of the chemo's she is getting and she did awesome. She complained of her tummy hurting once but said it was just a tiny bit. I wanted her to take some medicine for it (they have a bunch of anti nausea meds to try if zofran doesn't work) but she did not want medicine! I could tell it was bothering her for about an hour is all but she didn't complain, I had to keep asking her about it and she kept telling she was fine. She has always been like that, she doesn't complain about pain or sickness until I ask about it or until after she has already thrown up:) She is a tough little girl and so strong. Since the chemo started she has to pee every 2 hours because it is harmful to her bladder and kidneys if she doesn't, the chemo comes out through the pee so the more she pees the better. There is a protectant that is in the IV that runs with the chemo called mannitol. It helps protect the bladder and kidneys but she still has to go a certain amount every 2 hours and if she doesn't they have to give her medication to make her pee more. Around 4 the nurse woke her up and she couldn't pee. This happened last round too so I wasn't too surprised. They just hook up another bag of fluid to her tube that goes into her port. It ran for 30 minutes and then she peed about 20 minutes after that, and peed a lot. Thank goodness. It took a while to get her the medicine and the whole time I was worried and wanting them to hurry up so her bladder doesn't get messed up. These chemo's are scary! Jaylie did really well with having to wake up and go every 2 hours. I think she remembers it from last time so she didn't get mad or anything this time that we were waking her up. The nurse last night was wonderful! She was super quiet (although I wake up whenever anyone comes in or whispers to Jaylie, mothers instinct I guess) and would wake Jaylie up and take her to the bathroom and get her back in bed so I didn't have to get up. It was awesome! I still got up a couple of times but I sure rested much better last night than I did the last round of chemo. This round is the same, same chemo drugs, same amount and everything. I have heard that every round can be different for the kids and that the effects are accumulative, so it will supposedly get worse toward the 4th, 5th and 6th rounds. I was kind of nervous as to how this round would go but it has gone so smoothly so far. Jaylie just blows me away with how good she is doing. She is an amazing little girl that is for sure and we all have been blessed so much. Everyone keeps talking about our support system (they did when we were in intensive care after surgery too) and how amazing and unusual it is. They said most of the patients have a parent with them but that is about it. They don't see the support of whole families, grandparents, friends, etc. They said some people don't even have rides up to the hospital. So sad. My mom ran into Jaylie's radiation oncologist yesterday getting us some lunch for her and I and he remembered her and they talked for a little bit. He was commenting on our support and how rare it is. It would be sooo hard to do this alone with support. I really can not be more thankful for all the support we have. It is amazing. I was talking with our nurse yesterday and she told me she was blown away by Jaylie and said its hard for her to believe she had brain surgery with complete resection and radiation. She was talking with me and telling me how most kids she can totally tell they have gone through that. She said they have some sort of physical deficit like cant walk very good, cant use their arms very good etc and that they are just slower to respond. She said Jaylie was great and you would never know she had any of that done. She said her responding speed is great and her body moves just fine and that is so rare. She told me to count my blessings because she is in a really good place compared to other brain tumor kids. I totally agreed with her because most of the kids I have seen do have some sort of deficit from surgery. It breaks my heart for all the families that have to go through this. I do count my blessings, all of the time. I know Jaylie is in a good place. It is amazing and a miracle that she came out of surgery unharmed, that her limbs work perfectly and her mind is totally normal and sharp. That has actually been one of the hardest things going forward with radiation and chemo is that she is the same as she was before surgery, totally her normal self.  I wish we could have stopped there, after surgery. I hate that she had to have radiation and now chemo, but I know she will keep being strong and fight a good fight.