Tuesday, May 31, 2011

Radiation

Today went great, way better than Kip and I had even hoped.  Today we tried doing the radiation without any anesthesia. We were thinking she wasn't going to make it all the way through having to be so still, but she suprised us all and did it perfectly! The techs said she couldn't have done any better. She was amazing and did not move at all.  When it was over, she was happy and she says that she will be able to do that everyday. We hope so. There is more I want to write about it, but I will have to do it tomorrow.  Tomorrow she does radiation again and then goes to Dell Childrens to get her first chemo dose. She has to get her port poked, so we hope it goes well. I will update again tomorrow. Thank you for all your prayers, we have really felt them today.

Grey Brain Cancer Ribbons


My little brother Kade plays on a baseball team and one of the mom's made these grey ribbons for the players and parents. They all wore them to a couple of their games in support of Jaylie. We went to a game and took these pictures afterwards.  This was soon after Jaylie got out of the hospital. We appreciate this team and all those who helped support Jaylie and wore the ribbons. Thank you! It means a lot!

Say an extra prayer today

Hey everyone! We hope each of you had a wonderful memorial weekend! Today is the beginning of a long journey for Jaylie. Today Jaylie will begin radiation. Then tomorrow she will do radiation and chemo. Please say an extra prayer for her and keep her in your thoughts!

We can't say enough how much each of you mean to us. We appreciate all that you have done for us and for Jaylie. We feel so blessed!

Love,
Kip and Kajsa

Monday, May 30, 2011

Lemonade for Sale

The neighbor kids are selling lemonade today (Monday May 30th 2011) and are giving the proceeds to Jaylie. It melted our hearts! Kip and I were balling. We are so thankful for everybody! There are so many good people (and kids) in the world!!





The two boys selling lemonade are our neighbors Ben and Pierce. They came by last night and gave us this cup full of money. They raised $41! Kip and I were amazed, we never made that much selling lemonade when we were kids.  We felt bad taking money from them but they wanted to help out, it was the whole reason they did the lemonade stand. They told us that they heard what happened and they wanted to help because they knew that it was expensive to have brain surgery and radiation. They were too cute!

I love my ward aka church

So, the church we go to is called The Church of Jesus Christ of Latter Day Saints. Our ward is made up of the members of our church who we attend church with on Sundays, and do activities with throughout the week. They have been so good to us and so supportive (as has everyone else). Tonight (Sunday May 29th 2011) they came to our house and surprised Jaylie with gifts and singing. They sung her favorite church songs and then brought gifts up to the door. Jaylie was acting shy because there were a lot of people! They got her scarves, hats, art projects she can do, and some jammies. So many cute things!! Our ward family is so awesome, it meant so much to us and Jaylie loved it. It was so hard not to just ball the whole time. The support and service we are receiving blow us away everyday.
So a huge thank you to all those who came over and participated!  We are so thankful for everyone. We feel so loved and appreciate it more than you will ever know! We love our ward!




Sorry these pictures are off of my cell phone, so the quality is not great.
 Jaylie was being shy and kind of scared at first, so she wanted her daddy to hold her. You can tell he had been crying in this picture.


 View from our front door


Jaylie with all her gifts. She is wearing a pair of jammies she got also. She was so excited and has been dressing up with everything for two days now.


video

Sunday, May 29, 2011

It's been a whole month since we were in the hospital and we found out about Jaylie's tumor and then a few days later the cancer. This past month has seemed more like a bad dream, or rather a nightmare, than it has real life. I still can't believe my little princess has cancer and that we have to treat it with horrible radiation and horrible chemotherapy. We wish so badly we didn't have to put her perfect little body and mind through that. It is so scary knowing her mind and body will forever be changed from the treatments. We finally are done with decisions, its been a stressful couple weeks researching and talking with many different doctors from different cities. We decided to stay here in Austin for all of Jaylie's treatments. We feel good about it here and like all of our doctors. We thought about going to MD Anderson but with the kind of treatment she has to have, it wouldn't really help. She has to have full brain and spine radiation which is what we are really concerned about because of the late effects it can cause. We looked into a bunch of different types of radiation but they don't really work in her case with the full brain and spine. She will have effects from it no matter what kind of radiation she gets. Our biggest concern going into this is the late effects from it that could occur. We are praying to Heavenly Father that these effects wont occur in Jaylie's case, we are hopeful that she will have the best outcome possible with the least side effects and late effects. The ones that occur the most are a drop in IQ by 10 points or more, short term memory loss (she will probably struggle in school), pituitary gland issues (which controls hormones), hearing loss, and thyroid issues. She will be a couple inches shorter than she would have been too and there is a chance of scoliosis. We hate having to put her through this toxic radiation when her mind is so sharp right now and her body is working fine it seems. You would never know she has cancer, she is right back to her same self. We wish we could just not do anything and just have faith that it wouldn't come back, but our oncologist said it's so aggressive that she is 100% sure it would come back and come back strong. So our only option is to do the treatment and hit it hard with radiation and chemo. Dr.Harrod, our oncologist, said there's about a 60% chance she will be cancer free in 5 years. We have faith that Jaylie will be in that 60% and she will beat it. She is so strong. It's so scary thinking about the future but we are trying to have faith and know that Heavenly Father has a plan and there is purpose in everything. We don't understand it now, but someday we will know why this had to happen.

We have been enjoying fun family time before she starts treatment on Tuesday. We went on a little get away this weekend, it was awesome! I will write more about it later. A huge thank you to Jess, Bryan, and Chris for making this weekend happen. Y'all are amazing and we can not thank you enough!!

Again, thank you for all the prayers in Jaylie's behalf. We ask that you continue to pray for her, that her radiation treatments will go smoothly and that she will have the least effects as possible. Thank you!

Friday, May 27, 2011

Clarus Agency

Here are some pictures of Jaylie when we went to visit Jess and Bryan at their work, Clarus Agency. They are the ones who designed and put together the teamjaylie.org website for her. Jess's daughter Avery had a present there waiting for Jaylie. She loved it! You guys are awesome!


Jaylie with all the guys at Clarus Agency who helped with the website.

Jaylie with her present looking at Jess's computer.

Opening her present

Friday, May 20, 2011

More Pictures From the Hospital After her Brain Surgery

 Jaylie loved these rainbow popsicles. It is the first thing she ate after both of her surgeries.


 Looking at pictures with Dad. Her left side was really stiff and tense for the first few days after surgery. We put heating pads on her shoulder to help relax it down because she always kept it shrugged.

 We saw this face A LOT in the hospital! Whenever she wanted food or a drink, she would open her mouth like this instead of talk and tell us what she wanted.


 Dad feeding her some peaches a few days after surgery. I think she ate peaches at every meal, she loved them!

One of the few smiles we saw in the hospital. 

Jaylie's girl club poster Deb made. Deb is one of my mom and I's good friends and everytime she is over at my moms when we are there she has a girls club with Jaylie and whatever other girls are there who want to do it with them. Jaylie LOVES it! 

This is a picture of some of the goodies and gifts people brought/sent to us in the hospital. I wish I would have gotten a picture at the end of our stay because it probably quadrupled. So many people were so awesome to us. 

 Her first time getting outside the hospital since her surgery.

 Jaylie trying to push the marble ball around, it is a water fountain and the ball rotates when you  move it.
These are all the animals she received while in the hospital. Some from friends and family and some from the hospitals organizations. She wanted ALL of them on her bed all the time, so we kept them at the foot of the bed like this. She loved it! A huge thank you to all of you who contributed to this!

 Dad and Jaylie hugging in a maze outside the hospital. She has been a huge daddies girl through all of this. She adores him!
 I like this picture because it shows her looking at the iv in her arm. She hated these! She had so many of them and her arms would hurt so bad from them. She babied her arms a lot.

 She wore jammies the whole time she was in the hospital. These cloud ones have shorts that go with it. She was wearing the cloud ones and it was time to change her jammies and she threw a fit, she did not want to take off the shirt because she was scared to have to get it over her ouch arms. So we compromised and told her she could leave it on until we got back from our walk outside.

 My 3 kiddos. Crew looks huge in this picture! He is getting big so fast.  Jaylie got overwhelmed a little bit at night when everyone would come up to the hospital. It was a little crazy in that room with the kids, Kip and I, my parents, Kips mom, and sometimes my two sibblings Kindra and Kade. We had a huge support system in the hospital and the nurses thought it was cool and would always comment about it. My mom and Kips mom were up at the hospital with us pretty much all day everyday. It was awesome.

 Breklyn and Crew having fun playing on the fake grass at the hospital. We had just changed Crew's diaper and hadn't put his pants back on yet. It was so good seeing them at the hospital. We missed them so much!

 The pink monkey Jaylie got from the cart of toys, animals, books and more from the Assistance League of Austin. It is an awesome organization that brings the toy carts around to the kids in the hospital. It helped brighten Jaylie's day. We are so thankful for them. We will definitely be giving back to them someday.

 Picture of her hospital room, we tried to keep decorated.

 Crew playing in one of the playrooms they have at the hospital.

 Jaylie choosing a cookie from this darling cookie bouquet my friend Kandace sent her. 



 Looking out the window for the first time after surgery.

Following her surgery we would try and ask her questions and get her to do stuff to see if she still could, because we weren't sure how the surgery would effect her. A couple days after surgery she wanted to color and she used her left hand (she is right handed) because she had the iv's in the right arm. She did not use whichever arm the iv's were in. So she colored this left handed and wrote her name without us having to tell her to or how to spell it. We were thrilled!!!



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

Written Tuesday May 17th by Kajsa

I just wrote a ton and it got deleted again! I guess I need to learn how to use this app better. I don't have time to write much now, but today was great! Jaylie was awesome and did great. There was no cancer in her spinal fluid and no tumor on the MRI. Everything looked good except some fluid around her brain. She will go back in 4 weeks for another MRI and if it's not gone, then they will have to put a drain in to get it out. He thinks it will get better on it's own though. I will write more about it tomorrow though. But today was great! I am very optimistic and more full of faith than I was yesterday. I had a horrible day, I know sometimes I will but I have got to stay strong and keep my faith in the Lord. I know that's how I will get through. Some days will be good, some bad, but Jaylie will beat this and she's going to be fine. We have a lot if faith and prayers going up for her, so I know she will be ok. Thank you everybody for your continued prayers for our little Jaylie.

Love,
Kajsa, (Jaylie's MOm)


Written Monday May 16th 2011 by Kajsa


Today was a hard day. All the days since we found out about this have been hard, but today was worse. It almost seems like everyday gets worse, the way I feel is worse, and I get more scared everyday. The unknown is horrible. It seems the more I learn, the worse it all is. Sometimes it still seems like a dream. But it's reality and I don't have a choice but to stay strong, for Jaylie, myself, Kip, and the other kids. It's the hardest thing ever and I know it's just going to get worse. It kills me. The only peace I get is from Christ and my Father in Heaven.

Jaylie goes in tomorrow for an MRI and a follow up with Dr. Lee, her neurosurgeon. Were hoping that all is well and that the tumor hasn't started growing again. Her eyes have hurt her a little bit these last two days, so we worry that there is swelling, but hopefully not. We also see Dr. Harris, her oncologist tomorrow. We haven't gotten the results from the lumbar puncture yet, we are hoping there won't be cancer in her spinal fluid. We will find out all of this tomorrow.

I have a ton I could write; I'm just having a hard time finding time and energy to do it. I will write more tomorrow. Thank you again for your prayers.

Sunday, May 15, 2011

Jaylie helping out for Mother's Day


Jaylie loved helping Nana (Kajsa’s mom) Sunday May 8th 2011 make a beautiful Mother's Day cake for Kajsa! It was all her idea and she made it a surprise. What a sweet girl!!