Thursday, September 29, 2011

First Blood Transfusion

We went in today for Jaylie's weekly appointment and blood work. She ended up needing a red blood cell transfusion because her hemoglobin was too low. Her's was 6.9 and they do transfusions if it's under 8. Her platelets were 40 and they do transfusions for that if it's under 20, so she just red blood cells today. Her ANC was 620, which is low too. It is totally normal for her counts to be low and to need a transfusion. I knew her counts were low but she has been doing so good so I wasn't expecting her to need a transfusion. She has had good energy, no headaches and hasn't complained of not feeling well even once. Usually when counts are low they experience all of that. I actually went into the appointment today worrying that the chemotherapy wasn't working. I was glad she was doing so great but wanted to make sure the chemo was doing it's job to kill the cancer cells. I think being a mom of a child with cancer makes you worry about everything:) At least we know the chemotherapy is doing it's job. Jaylie was really upset that we had to stay for the transfusion, she just wanted to go home. My mom, Jaylie and I left to get lunch bc they said it takes an hour to get the blood bc they match it and check it to make sure it's compatible with her. We walked across the street and ate and the whole time she was upset saying she wanted to go home. She was scared because she never had to get a transfusion while she was conscious. She had two during surgery. She didn't know what to expect and was asking me if it would hurt. I felt bad for her but after I talked to her and reassured her she was a little better. The transfusion takes around 4 hours so there was a lot of time to hang out in the clinic. Jaylie loves doing crafts there. We did crafts, played games, and watched half a movie. Once she was hooked up she was fine. It kind of creeped me out to see the blood go into her tube for her port. Just thinking that someone elses blood was going into her was really weird. I am thankful for modern day medicine though. I used to have the weakest stomach but all this has made it quite strong. I don't really have a choice but to watch her get poked and get blood taken etc so I can make sure it's being done right and that Jaylie's ok and so Jaylie knows it's ok. Got to be strong for her. She's a trooper. It really wasn't that bad except we were there from 10am to after 5. We didn't get home tonight till 7:30ish. It was a long day. They said she could have a reaction to the transfusion but it usually happens in the first 15 minutes. She was fine though and I just have to watch for certain symptoms for the next 48 hours. Jaylie's teacher Trudy came yesterday. Jaylie loves her and looks forward to her coming for days before. Trudy is so great. She got Jaylie Hello Kitty pencils and a Hello Kitty folder. She was so excited! We are thankful for Trudy. Jaylie wanted to do school work for like an hour after she left:) My mom has had Breklyn and Crew at her house for a couple days because we knew Jaylie's counts were low and they both had colds and coughs. Breklyn is fine now and Crew is almost over it I think. They had lots of fun over there but I missed them so much!!! It was so quiet around our house. I got home so late so only had a couple hours with them-I got them to bed late:) Breklyn is so sweet and cute. She always says the cutest things. Crew is so funny! I could kiss him all day. I just can't get enough of them! I love all my kids so much!

 Jaylie watching a show before Nurse Karen came in to poke her port. I told her to smile for the camera and this is what I got :)

 Smiling playing kitty songs with her Nana (my mom). Jaylie loves my Mom going to all the appointments, one big reason is that they do kitty songs. Jaylie doesn't do them with anyone else but her Nana. Every morning that she has an appointment she wakes up and one of the first things she asks is when is Nana coming. My mom is so good to come with me, its great support and Jaylie loves it. I would probably be a lot more emotional and cry a lot more at the appointments without my Mom there. She helps me to realize that it is ok and we will make it through. Today was hard for me bc Jaylie was having a hard time. She wouldn't stop crying and that made me want to cry for her and with her. Then we started talking about how my Mom should probably take the kids back to her house since J's counts were low and I started balling. I hate being away from them, I hate seeing Jaylie upset, I hate cancer, I hate all of this. Its not fair, why does it have to be us, Jaylie. All this was going through my head. Once I start really crying, it is hard to stop and then the tears come fast for the rest of the day. Most of the time I am ok and I realize that this is in God's plan and he loves Jaylie and all of us so much and that it will be ok. Its just so hard sometimes. Anyways, I love Jaylie's smile here!
 My mom with Jaylie's new Hello Kitty from build a bear that she got her. Jaylie loves doing kitty songs with both kittys now. This pink one is named Pinkie. The white one is named Hello Kitty, we call her Hello. Jaylie is too cute. I love this girl so much, she is so sweet and so cute.
 Playing games at the table in the cancer clinic while getting her transfusion. I tried to get some pictures of the bag of blood and stuff. It was crazy for me, Jaylie was totally fine with it, didn't phase her at all. I have always had such a weak stomach though, but it is getting quite strong. Still it was weird. I will probably get used to it fast bc she will be having a lot of these now.

 It works like the chemo or an iv, the blood is in the bag and it goes through the tube and into her port. Most of you probably know all this, it is so new to me. I never understood what radiation or chemo or transfusions or mri's were. I knew nothing. I had heard about it but never knew what it all was. Now I do unfortunately. I will know enough by the end of all this to become a nurse!

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