Team Jaylie: Back in the Hospital

It is really hard being back here in the hospital. It brings back so many memories of finding out about Jaylie's tumor, her surgery, and her diagnosis. That was such a hard time and it is really hard to think about and relive those memories. It's been about 3 1/2 months since we found out about her tumor. In a way it seems like forever. It seems like the last few months have been a dream. I feel like I will wake up and everything will be fine-my little girl will healthy and getting ready for Kindergarten and we will be a normal family that has to worry about normal things, not cancer or tumors or sickness or medicine or death. I hate that I know its not really a dream and that its real life. I would give anything to wake up and have it not be real. Jaylie can't go to Kindergarten this year. The chemo will make her immune system go down to nothing so its too risky to have her around kids. The school district is sending a home bound teacher to our house probably once a week to work with Jaylie. We are hoping to keep her up to date so she can attend Kindergarten after her treatments are over, hopefully in March or April. Its so hard. I have looked forward to her first day of Kindergarten since she was born. I have pictures of my first day of Kindergarten and have thought about taking pictures of hers and what it will be like. I always imagined how hers would be, where we would be living, what she would wear, and how she liked it. I think every mother thinks about that day. Now I will never get to see her first day of Kindergarten and it is so hard. Jaylie's teacher called me today and invited us to the meet the teachers night at the school tonight. She was so sweet and I am excited to meet her. She didn't know about Jaylie yet so I had to tell her and then it kind of sunk in. This is real. This is my new normal. I hate it. I wish so badly it were different, but its not and we are dealing. Most of the time Kip and I are ok. Life has been really busy for us and that helps so we don't think about things too much. It is hard sitting here in the hospital in our room with just Jaylie and I and having time to think. Luckily my mom was here with us all day. She is so great to come to all the appointments with us. She stayed until Kip got off work and brought the kids up. We all hung out and played and then she took the kids home with her and then Kip went home to get some sleep. I miss the kids so much when I am away from them all day. It was so good to see them. Its hard having them up here for too long because they are loud and the room is so small and it gets hectic fast, but I love it. They are the sweetest cutest little kiddos I know :) I am so in love with all my kids. I am so lucky to be a mom to them. Jaylie loves seeing them too. She kept talking all throughout the day about them coming up to visit her tonight. She made some crafts for Breklyn earlier at the cancer center and was excited to give them to her. She is a great big sister and she loves them. They make her smile and they love her too.
Jaylie has been doing really good today. We first went to the cancer center and got poked and got blood work done. A couple clowns were there from the Circus that is going on this weekend and they did a little show for the kids. Jaylie loved it. They gave them some goodies afterwards too and she got a bead to add to her beads of courage necklace. There is a little video that she is in a little bit on kvue.

Here is the link.
http://www.kvue.com/home/Circus-clowns-perform-for-Dell-Childrens-patients-128039568.html

The cancer center and this hospital are wonderful. They always have fun things going on for the kids. It realy helps to make it more fun for them. We had to wait around the cancer clinic for a little bit while they were putting our orders in to transfer over to the hospital. Jaylie made a lot of crafts while we were waiting and we met another little 5 year old girl there that has leukemia. They live in our same town so it was fun talking with her. Its always nice talking with other parents whose has or has had a child with cancer because they know exactly how it is. I feel so much for everyone else who has to go through this. It makes my heart ache so much.

We got into our room on 4th North and got fluids started around 3ish. They are giving her chemo, all her fluids, and doing bloodwork all from her port. It was accessed at the cancer center and has a tube hanging from it that they hook everything up to. It is so much nicer than having a bunch of iv's in her arms. They have to get her levels just right before they can give the chemo, so they did fluids in her iv for 2 1/2 hours before starting the actual chemo. We have to monitor what goes in and out the whole time we are here. With this chemo medicine she doing right now (cisplatin), she has to be peeing every 2 hours. This will be a long night because we have to wake her up every 2 hours and make her go. They have to do vitals every 4 hours too. Hopefully she will get some rest. Jaylie's doctors and nurses said all kids react differently on chemo and all the chemo meds are different. I never realized how different chemo can be for everyone and how many different chemo meds there are. Some kids get nauseous and throw up a lot, some a little, some not at all. I didn't know what to expect. They started it at 6 and she has been fine so far. No complaining at all and she ate a lot for dinner, which was awesome. I hope she keeps it up and does well for the whole thing. Before they even give the chemo they put zofran in the iv and keep zofran in her the whole time in the hospital. If that doesn't work well, they have other things they can try to. She is doing great though. She is watching a show right now and then we are going to try and get some sleep.