Tuesday, November 22, 2011

Transfusion Today

Jaylie's count are low and we knew they would be. We had her appointment today to check them and see if she needed more blood or anything. Her platelets were still low even after getting blood and platelets on Thursday. So today she had a platelet transfusion. They said its normal because we are on the fourth round, and it will just keep getting worse as time goes on. Her ANC is only 30. Normal is 1500 or more, so she is super low which means she has no immune system and could get infections easily. I figured it were really low but I was hoping it was higher than that. I got home and sanitized everything like crazy. I know I can't prevent everything but I want to do all I can so she doesn't get sick and end up in the hospital, especially for Thanksgiving. That would not be fun. Jaylie said to me today that she actually likes getting blood transfusions because she likes staying and doing crafts. She has such a good attitude and rarely complains about anything unless I ask her if anything hurts or is wrong. She did really well today getting her port accessed and then deaccessed. I am so proud of her. Today the Loving Libby Foundation https://lovinglibbie.uscontributions.com/
did a Thanksgiving dinner at lunch time in the cancer clinic. It was so neat and we were so thankful we were there for it. This foundation is really amazing. The parents of Libby, a little girl who passed away from cancer, started a bakery and this great foundation soon after she passed. They provide super yummy Mac n cheese and chicken and dumplings to the cancer clinic and to 4 north (where the blood and cancer kids stay) at the hospital. Jaylie loves the Mac n cheese and it really means a lot to me that they have this foundation and provide this to all the kids. I met Libby's mom today and started thanking her and couldn't help but ball while I was talking to her. I'm such a cry baby now, it seems like I feel everything deeper than I had before all this happened with Jaylie. This foundation and many others who do things for these cancer kids have a special place in my heart. I am so thankful for them because they really do make a difference in our lives and the other families lives who go through this too. The Loving Libby foundation has a couple bakery locations also which I found out today so one of these days we will go check it out. The info is on their website, so if your in the area check it out too! Part of the profits go to helping them provide the clinic with the Mac n cheese. It was a really great experience today and was fun to have a Thanksgiving dinner there. Anyways, when you get blood or platelets there is always a chance your body will have a reaction to it so they monitor you closely taking your temp and blood pressure throughout. Jaylie has always been fine and never reacted to it. She was fine today too but about an hour after we got home she started clearing her throat a lot which they say is a sign of a reaction. She said her throat felt funny and kept clearing it so I called them and they said give her benedryl and monitor her. I was out of benedryl and was going to get some on the way home and forgot. I was scared and worried she would stop breathing or something. The worst always runs through my mind. I emailed all the girls in my ward at church that are all on a yahoo group and asked if anyone could get me some and bring it to me. I didn't have the kids car seats and I couldn't take Jaylie in to the store anyways so I was desperate. Thankfully a couple people responded within minutes of my email. I was so touched and so thankful. I got off the phone with my friend Chrissta who stopped at the store and was on her way and got emotional because I was overwhelmed with gratitude and realized people care so much and are willing to help. I am sooo thankful for good friends who are willing to help me out. It's so nice to feel like I'm not alone and that people care. I gave Jaylie some and her throat clearing went away and she's been fine. I can always tell when Jaylies counts get low because she is more whiny and emotionally sensitive as well as physically sensitive. She is a tough little girl and doesn't complain about a whole lot, but I can tell she doesn't feel good. She has been sensitive and whiny and has been crying very easily today. She has bad bruises all over her legs because her platelets are low so she bruises very easily. She has sores in her mouth that hurt when I brush her teeth, I could hardly brush them tonight she was crying from the pain. She doesn't eat a whole lot when they are really low but I don't blame her. It hurts her when Crew crawls over her or sits in her lap or Breklyn steps on her foot accidentally. Her body is just so much more sensitive and things that wouldn't ever hurt her normally do now. She gets a little bit more tired but not as much as I expected her to be when her counts are low. She still plays with the kids and has dance parties with us, she just tires quicker. Usually most of these symptoms only last a few days when her counts are at their lowest. Her doctor said they will probably stay lower for longer with each round. I'm hoping they go back up quickly this time and that she stays fever and infection free. She has done so well so far I can't complain, lots of kids going through chemo have a harder time. We are definitely very blessed in many ways. I have been thinking of all the many things I am thankful for this year as Thanksgiving is only a day away and the majority of them are things I have always been thankful for, I am just thankful in a whole different way this year. My eyes have really been opened and I will never be the same person. I have learned a lot and feel more grateful this year for so many things than I have in the past. The one at the top of my list is that I am thankful for everyday and every second I get to spend with my little Jaylie and the rest of my little family, Breklyn, Crew and Kip. Life is so fragile and you never know what's going to happen. I am thankful for everyday I have.

Here is Jaylie getting her platelets. They are yellow, pretty crazy. I'm also thankful for people who give blood because it helps my sweet Jaylie tremendously.

There is so much more I could write but I'm going to bed :)
Thank you everyone for all your prayers!
- Posted using BlogPress from my iPhone


  1. Kajsa....just remember we all love you and are praying for you and your family!!! I am glad Stacey and Chrissta could help you out!! We have some amazing women in this ward!!! Hugs and Loves Laura

  2. oh my word, girl. I'm sitting here at aaron's parents house and just read this latest update.... and here I sit just crying and crying. I'm crying b/c I hate that Jaylie has to get so sick and hurt. I'm crying b/ c I'm so grateful at what a little warrior she is. I'm crying b/c I can see how deeply you feel and how that, in turn, has helped me to feel things deeper.
    I just love you and your sweet family so much. this whole process you've gone through has opened my eyes too. I try so much harder to be available (physically and emotionally) for my family. I squeeze my kids tighter now. Truly, there is not a day that goes by that we don't think of you guys.
    As it's a day where we think about blessings in our lives, I think of you. I think of Jaylie. Your family... you are are blessings in my life and I'm so grateful for you guys and your friendship and especially, your examples.

    sending my love your way.
    so grateful that there are ward members, friends, and family to help when we can't.

    lots of love, melis

  3. You are doing such a good job Kajsa! Jaylie is really lucky to have an amazing mom!! :)