Thursday, May 19, 2011

Written Thursday May 19th by Kajsa

I want to start off saying that Jaylie is doing SO amazing! I couldn't be more proud of her! She has been a huge example to me and she helps keep me strong.  She has such a great attitude and is so willing to do whatever the doctors and nurses tell her to do.  At her 5 year check up in February, she freaked out when they took her temperature, blood pressure and listened to her heart beat. She hated it and whined and cried. When they did a finger prick she freaked out like I have never seen her or any kid freak out, it was crazy. Now she is getting to the point where she is enjoying the nurses doing all of this, well except the finger prick (but she doesn't freak out anymore with that). The neurosurgeons nurse came in the other day and was talking to her and looking at her stitches and stuff and she had her stethoscope in her hand and Jaylie said, "I want to do something else! I want you to listen to my heart beat!" She was bored or just talking, she wanted her to do the heartbeat and the blood pressure and stuff. My mom and I were floored because this isn't like Jaylie.  All the doctors have been saying how much they love working with kids because kids are so resilient. I didn't really believe them at first, but I am seeing this first hand. I am just amazed at Jaylie and how well she is coping with all the doctors and nurses. She has her sad moments and her scared moments, but overall she is doing amazing. She has recovered SO well from her brain surgery. Her doctors are all saying how well she has come out of surgery. She is fine and walking, talking, and writing just as well as she was before the surgery. We don't see any effects from it, and the fact that they were able to get the whole tumor out is amazing. She has a lot going for her right now (that's what all the doctors keep saying). 

So on Tuesday we had a whole day full of appointments. My mom has been coming with Jaylie and I to all the appointments. I am so grateful to have her there for my support. It is really hard going through this and having the little two kids to take care of too. I am thankful for all those who have helped watch them. I worry about them a lot and hate being away from them so much. Breklyn went to her friends house and we took Crew with us on Tuesday because he had an appointment that afternoon downtown for his doc band. He had torticollis, a neck condition that made his hold his head off to one side, when he was born. He has been in physical therapy to correct it, but he still developed a flat spot on back side of his head and it was starting to cause asymmetry in his face and ears, so we put him in a doc band, which is a little helmet that helps to shape his head and make his head more round and his face more symmetrical. So he goes every 2 weeks for appointments. He only has 4 weeks left in it and we are so glad. Luckily the place where he goes for his appointments is only a few minutes from Dell Children's. So, we left the house early (Jaylie hates when I have to wake her up) and had a quick MRI done first. It is a lot faster than a regular MRI, they only have to get 3 30 second pictures, so they don't have to put her under anesthesia. She got changed into the hospital gown and we went and waited on some chairs next to the MRI room. She was ready and excited to do it and kept saying she wanted to go in the room and lay there really still. (I had been prepping her telling her she needed to lay there really still so they could get the pictures they needed). She was not scared at all when they were ready for us. She got right on the bed and did exactly what the tech said to do. She was completely still and the loudness of the machine didn't seem to phase her. She is such a trooper. After that she got dressed back into her clothes and we went upstairs to the oncology floor. We have met with our oncology doctor, Dr. Harrod, a few times, but this was our first time there. We sat in the waiting room for a while and it was crazy looking around because you know that the kids who were in there either had cancer or had it at one point. I couldn't tell on most of them, but there was one girl, probably 12, that had a scarf on her head. She was really nice, she had cancer in her leg that she was getting treated for. I showed Jaylie her scarf and told her we could get her a cute one like that too. It is good for her to see other kids going through it. Jaylie seems fine with loosing her hair and everything, we will see when we get there, but she has a great attitude right now. She keeps telling me she wants to get a wig, so I probably will get her one. So we finally went back and met with Dr. Harrod. She stepped out of the room for a minute and a darling clown walked in. Jaylie and Crew loved it!! She was doing magic tricks with them and gave them a toy and bubbles. Crew was just staring non-stop at her and Jaylie was just smiling and laughing. I got choked up seeing this clown. Every time someone comes in like this, or the pet therapy dogs, or all the organizations that give the kids toys, blankets, and stuffed animals, I get emotional. These organization and volunteer people are so amazing. We will definitely one day be donating money to this cause.  This whole experience sure has changed us and opened our eyes to a whole new world.  Anyways, Dr. Harrod came back and we talked. We are trying to decide if we want to do the study they have for this type of cancer or not so we talked a lot about that. We talked about the chemo meds and side effects and she answered our questions. She told us her lumbar puncture results, that there is no sign of cancer in her spinal fluid. I was sooo relieved! It wasn't going to change our treatment plan at all, but I knew it would be harder to get rid of if it is was present. I love this doctor. She is so great with Jaylie and is genuine. She takes the time to talk to us and answer questions and make sure we understand everything and she never makes us feel rushed (unlike so many other doctors). Even when I know she doesn't have a lot of time, if we want to talk, she will pull up a chair and we will talk until we are done. She cares so much and we really like her. Jaylie will be getting chemo once a week during the radiation, which is 6 weeks long and then she will get 6 rounds of chemo after that. A round will consist of being at the hospital for about 3 days and then home for about 28 days. So the chemo will take about 6 months. She has a recovery month in between radiation and chemo. So total the treatment will take about 8 months. Because of the type of cancer she has, they have to hit her hard with a lot of radiation and a lot of chemotherapy. This is the only shot we have so its pretty heavy stuff. With her type of cancer if it comes back after the therapy, it is fatal, there is not much you can do. It is super scary but we try not to think about that and just think positive. We know she can beat this, if any 5-year-old girl can do it, Jaylie can. She is so strong and so competitive and so driven. We have so many prayers being said for her that she will beat it and she will be fine.  

After we were done talking with Dr. Harrod, they gave us a tour of the cancer clinic. It was decorated so fun and everyone there was so nice. Jaylie loved it! They have an area with TVs and gaming devices and an area with crafts and painting and a kitchen area. They have a lot of snacks and drinks and then Amy's ice cream (an awesome ice cream company here in Austin) donates little containers of their ice cream, so there is a whole freezer full of it. Another organization donates mac n cheese and dumpling soup that the kids can eat. Jaylie loved this too. It was around lunchtime and we didn't have time to get something to eat before our next appointment, so they let Jaylie eat there. We were all impressed with the cancer clinic and Jaylie is still talking about it and asking when she can go back :) We then went down a floor and met with the neurosurgeon who did Jaylie's surgery, Dr. Lee. We all love him, he is so great. Her stitches on her head look good and the MRI looked good except she still has some fluid around her brain because her brain kind of fell down after they took the tumor out. The tumor was so large that it was holding the brain up and now that it is gone, the brain kind of shrunk down and now there is fluid on the top of it. He didn't seem too concerned and said it will probably go away on its own, but just to be safe, he wants another MRI in 4 weeks and if the fluid is there still, he will have to put a drain in it to get it out.  Hopefully that won't have to happen though. He and his nurses were all impressed with Jaylie and how well she has come out of surgery. I will forever be thankful for Dr. Lee for getting all of her tumor out and her not having any effects from it. It is amazing that these doctors can do these long surgeries in peoples brains, it really is crazy when you think about it. Kip and I have talked many times how thankful we are that people can do these lengthy surgeries (some kids surgeries are 10 hours long) and are willing to do it. We will love this doctor forever.

We hurried from there to Crew's appointment and then headed to pick up Breklyn and then went home. We were home for about an hour and then went to my little brothers choir concert. All three kids did awesome, the concert was super entertaining, I had a smile on my face the whole time, I was glad we went. The kids loved it too. 

The next day, Wednesday, we had an appointment with the radiologist. It was our first time meeting with him. We had some friends come and watch Breklyn and Crew at our house and Jaylie and my mom and I went for the appointment. We really liked this doctor also, Dr. Steven Brown. We talked with him about the treatment plan a little, the side effects and late effects of the radiation, what would be expected of Jaylie and kind of how it all works. He was very good at explaining everything.  In order for him to map out where exactly she needs the radiation, he needed a CT scan. We went to get the scan and they had to make a mold of her body while laying on the table and had to make a mold of her face. They have to line up the lasers just perfect, so they make sure they are doing the radiation therapy to the correct areas. Once the molds were done, they sent her back into the ct scanner. Jaylie did great and was so still. For the face mold, they took a hot plastic thing and while it was still hot put it on her face and molded it around it until it dried and hardened up.  She did not move a muscle while they were doing it and did not make a peep. I was so impressed. I don't think I would have been that good! They ended up having to do 2 masks because the first one didn't turn out good enough. She was really upset when she found out they had to do it again. Through her tears, she went on to tell us that the first one burned her face, which we had no idea, she didn't say anything. The tech lady felt bad and said she would make sure this one wasn't too hot. Jaylie settled down and was awesome during the second one. They let us take the first one home and she has been showing all of her visitors. Dr. Brown told Jaylie he would paint it however she wanted.  If she wanted an animal or a princess or whatever. So she chose Tweety Bird. She is quite excited about that! I have been trying to prepare her and work with her for her treatments. She will have to lay perfectly still on the bed with the tweety bird mask on (it hooks to the bed) for about 25 minutes. She can't move at all because if she does, the radiation will go somewhere its not supposed to. I don't know if she will be able to do that or not, I hope so, but that is a long time for a 5 year old. So were going to work on it and try it, if she can't then they have to give her anesthesia everyday through her port. 

Kip and I hate that Jaylie has to have this radiation and chemo because it is so bad for your body. I hate that it makes you sick and hurt and tired during it and then I hate the effects you could get from it that affect the rest of your life. Radiation is scary. A lot scarier to us than chemo and chemo is scary to us. The effects are worse than the chemo. It could cause a lot of problems for Jaylie for her entire life. It freaks me out to death. You want your children to achieve the best and be the best and have a great life. We have faith that she still will, but radiation is just not good especially for a child as young as Jaylie. She has to get a large amount of radiation to her whole head and spine. One thing that will probably happen is that she will be a couple inches shorter than she should be. This is fine with us because she is super tall anyways, she is in the 75th percentile right now for height, so we don't worry about that too much. Her IQ will go down about 10 points, which won't be too horrible because she is such a bright kid right now. Her short term memory will probably be affected and she is getting radiation near her pituitary gland and her thyroid, which can cause a lot of different problems. Some hearing loss is common too. It is quite scary, but we have no choice, if we don't do it, the cancer will come back. We are just praying and ask all of you to pray for Jaylie that the radiation will do what it is supposed to and that she will come out of this with the least effects possible.  We know through faith and prayer that it is possible for her to be just fine and to be healed from this cancer fully.

I feel like I am gaining more faith everyday as I hear about all the people praying for Jaylie, some I know, some I don't know. It gives me strength, hope, and faith. I have been so amazed at how people have been so kind, so willing to help, and so full of faith and prayers. My Dad just called me and told me he was at my little brother’s baseball game and that all the players and coaches and most of the parents there were wearing ribbons for Jaylie. He was so touched by it and called my Mom who came to see. One of the coach’s wives made them grey ribbons last night. How awesome and amazing is that. My Dad is taking pictures so I will post some when I get them. It means so much to us. I have been crying a lot lately and some of my cries have been gratitude cries because I am so thankful for everybody and it touches me so much that people care so much. We will forever be grateful to all the people who have helped us in one way or another whether it was a text, phone call, message, visit, package, gift, meal, treat, yard work, babysitting etc. I cannot even express how grateful I am for all of it. I am just so completely blown away by all of the support and service on our behalf. It is amazing at how people just pull together and are so willing to help. I hate being on the receiving side of things and it is really hard for me to ask for things and let people help, but I realize we can't do it alone. We need the help and support. So I thank you all SO much! Thank you, Thank you, Thank you!!

My little brothers football team with their ribbons on
 Jaylie with the clown blowing bubbles


  1. Kajsa, thank you so much for this update. You included so many details and it sounds like you are all in amazing hands. We love you all and miss you so much. Dylan asks about Jaylie daily and is constantly drawing her pictures to send - I need to get some more in the mail. :) I am so glad she seems to be doing so well with all of this. We keep you in our prayers!

  2. I'm loving every detail that you write kajsa! And someday jaylie will look back and be grateful that you kept a good record of this difficult time. Know that we have been praying for you all since we heard and will continue to!

    Love, the Pruetts in georgia

  3. How cool are all those ribbons! And that picture with her and Kip just brought me to tears. So sweet! Good for you to find the time to sit down and write. All the details are priceless. You can do this, Kajsa! You can do all things with the Lord. We sure are thinking and praying for your family!

  4. I am so grateful for your updates. Amelia is in the other Primary class so she doesn't know Jaylie. However, she knows that there is a little girl in her Primary who is her age and is very sick. Every single prayer, she prays for Jaylie. She looks at the blog with me, she asks me about Jaylie.
    Your little girl is so very loved, and we are all praying for her and rooting for her.
    Much love to all of you.