We met with Dr. Brown, our radiation oncologist today and he said Jaylie was doing excellent. He seemed really impressed with her. He said her skin looks great. He said some get so bad and burned it peels and stuff so she's doing great that she doesn't have that. She doesn't have headaches and doesn't have to be on steroids either. I feel like she's doing great but it's nice to hear it from a doctor too. She finished up the full brain and spine radiation on Monday and is now doing radiation just to the spot on her brain where the tumor was. I still hate that she has to do radiation to her brain, it is the worst place on the body to have to have radiation. We are just hoping and praying that she will have the best outcome possible and she will be ok as far as future side effects go. I hate thinking about it, it's too hard. I can't think about the future, when I do I am in a dark place and am not ok, so I just don't go there. She had her once a week chemo today too and it went well. She was still scared but calmed down pretty fast after the poke was over and the tubie was in. They want to up her Ativan dose (anti anxiety drug) for next time, so we will see how that works. I am wondering if it just takes a while to kick in for her because after chemo we went and ate lunch and she was quite loopy and drowsy and saying funny things. She also ate A LOT for lunch! We were so proud of her! She had 4 pretty big bean and cheese nachos, one of the only foods she is wanting to eat lately. She had them dipped in sour cream, so that was great. After she ate them I was worried she would throw up because she hadn't eaten that much in a while. She was fine though, she just said she was full. After she ate we started wondering if it was the Ativan drug that made her eat more, who know, I guess we will see how next week goes. She hasn't lost or gained weight this week which is good I guess. They want her to gain so they are upping her appetite suppressant too. Hopefully it will help because it's still such a huge struggle getting her to eat and drink. She still is hating to take her medicines which is hard. There are so many of them, it's crazy. Breklyn is on antibiotics for a double ear infection too, there is lots of medicine at our house. Surprisingly I don't forget to give it to them, I thought going into this that it would be hard for me to remember, but it's easy when my mind is constantly filled with medicine, food, cancer, appointments, tests, etc. Life is totally different than it was a few months ago and I have a totally different perspective on life now. The little things really don't matter, I'm realizing what does matter in life, my children, my husband, my family, and my faith. I am so thankful that I am able to be my childrens mother, they are so amazing and teach me so much. I'm thankful for my awesome loving husband and for my family and friends who are so supportive. I am so thankful for all the prayers given on our and Jaylie's behalf. It's amazing seeing all the good come from something so bad. This is definitely the worst and hardest thing we have ever gone through. So much hurt and heartache. I know we are able to go on and be ok because of all the prayers, so we thank you! We thank our family, friends, acquaintances and strangers, we are forever grateful for your prayers and support.
I have been so busy I haven't been able to post pictures, but I will soon, I have so many I want to put on here :)
Thursday, June 30, 2011
Father's Day
Here is a picture we took on Father's Day. We went to sacrament today but not to the other meetings. We made Kip some cake balls and one of his favorite dinners. The girls loved making him cards and making him feel special. Im so thankful for Kip and for what a wonderful father he is to our kids!
Saturday, June 25, 2011
Random Things
I have so many pictures I need to post and write about, so I will hopefully do that soon. For now, here is a little update.
Jaylie has done really well the last couple of days and has had a lot of energy. We are all surprised at how much she has. She is not napping and is waking up pretty early everyday. I am surprised she is not wiped out. My brother and sister in law got into town on Thursday so we have been hanging out at my parents house with them a lot. We have been swimming a lot and the girls have been loving it. Jaylie loves swimming and I am so glad she is able to do it and feels good enough to. If she still had her hair you would never know she had cancer and was going through radiation right now. She jumps in, swims, bounces around, floats, plays Ariel games in the water, and does everything a normal 5 year old would. It is still so crazy that my little girl has brain cancer. It is crazy seeing her without hair every morning when I wake up. It is the first thing I think about when I wake up and is the last thing I think about before going to bed. It is hard to ever get a break from it. I can't even get through a movie without thinking about it. It is constant. It is hard. I am just so grateful that she is doing so well so far. Everyday will get worse, but it is great that she is doing as well as she is at this point. She is really emotional lately, way more than ever before. She cries a lot at little things that bug her or hurt her feelings. She is just a lot more sensitive. Her body is more sensitive too. All her senses seem to be heightened. Her sense of smell is crazy good, bad smells really bother her. Things hurt her a lot easier too. Before if she bumped into something she would be fine, but now it seems to hurt her real bad. I don't blame her for being more emotional, I am way more emotional than I've ever been before too. And she is actually taking it all a lot better than I would have ever thought.
Jaylie really likes her hair. She was watching my sister in law and my little sister get ready and fix their hair the other day. They noticed her watching them and they told me she looked at them for a while and then looked at herself in the mirror and then said that she loved having no hair and wants to keep it like that forever (they thought she would be sad about it). I can't believe her attitude, it really is amazing! This little girl is something else, she wows us everyday. She is a little miracle already.
She is on the appetite stimulants and is doing a much better job eating. She will actually ask for food now! I had to beg her to eat before and now she will actually tell me she is hungry and she wants food. Its crazy! I am loving it, hopefully we can get her to gain some weight in the next 2 months before chemo.
I didn't post on Father's Day. We had a really great day. Jaylie and Breklyn had lots of fun surprising Kip with cards, cupcakes, dinner, and more cards. They were so excited to make it special for him. Jaylie said "I wish everyday could be Father's Day and Mother's Day. I wish Mother's Day was every Saturday and Father's Day was every Sunday". So sweet! Later that day she told Kip, "I wish I had radiation on Sunday so staying really still during my radiation could be my present to you for Father's Day". Kip and I looked at each other and almost started crying. She has been the sweetest little girl lately.
A couple weeks ago, just before Jaylie's appetitie went way down, she said something really cute at her chemo appointment. We were walking out and she asked me if I had ever had cancer so I told her no and that she got it because she is special. She then said "I'm glad I got it because I get to do all this fun stuff and come here and get to eat this" (she pointed to her Amy's ice cream). She was smiling. I am glad she is happy about it. The other day at radiation, my mom said to Jaylie, "Ok, now you get to rest with your chin up and then after radiation..." Jaylie then butted in and said "I can rest with my chin down!" My mom was going to say we will go eat. We thought that was pretty cute. The thing she hates the worst about radiation is having to keep her chin up so far. That is the thing she complains about the most. She has to tip her head way up and it is uncomfortable for her. She does such a good job with it though and she realizes she has to so the radiation can get in the right spots.
We were playing in the play room the other day and Breklyn and Jaylie were playing doctor. Breklyn started talking about Jaylie's radiation mask and I told her that when Jaylie was through with the radiation she gets to keep the tweety mask and told her that she could have the other one (we have a white one here at the house). She said yea, but I want to wear the tweety mask and take a rest on the table like Jaylie does. She wants to be just like Jaylie. I took her to the doctor yesterday and she has a double ear infection and has to be on antibiotics. She gets sooo excited when she gets to take her medicine at the same time Jaylie does. She would ask for medicine once in a while when Jaylie had to take hers. She is glad to have medicine like sissy now. She is so funny and sure does love Jaylie.
Jaylie had an audiogram a couple weeks ago. One side effect of chemo is hearing loss, so they monitor it closely throughout all these treatments. This was her first appointment and she did great. She was really cute and talkative with the lady who did it. She has excellent hearing right now. Afterwards, the lady told me that Jaylie has a great spirit, a really great spirit and that she is just full of life :) That made me happy. Jaylie has gotten so much better with adults and strangers because of all of this. There is a huge difference in how she was in the hospital before and after surgery and how she is now. Huge difference. I remember in the hospital shortly after we found out her diagnosis, our oncologist said most of the kids open up pretty quickly and are not shy with them (the nurses and doctors) anymore. Everytime a nurse or doctor would come into her hospital room, she would turn away and not want them in the room. It is so different now. She has come a long way.
Sorry it was all so random. I wanted to write about these things so I wouldn't forget them. This is my journal through all of this, I am not keeping a separate one, it would be too much work. It is good for me to write and I think it will good to have for the future, for us and for Jaylie. I follow a couple caring bridge websites of other girls who were diagnosed with this same exact type of brain cancer when they were 5 too. One has been cancer free for 3 years now which is great, but it is so discouraging to read about the long term side effects from the radiation and to read about what the doctors say about her future and quality of life. I almost don't want to read it because it is too hard, too hard to think about the future. The other little girl's cancer came back and when it comes back with this type of cancer, it is not good. The doctors say it is fatal if it comes back. It breaks my heart to read what they are going through. They are doing treatments and drugs that have never been done in a child of her age, to try and fight it. I feel for both of them and realize that we will be in one of those positions down the road. I feel so badly for other moms and families who have to go through something like this. It is a club that no one wants to belong to.
Jaylie has done really well the last couple of days and has had a lot of energy. We are all surprised at how much she has. She is not napping and is waking up pretty early everyday. I am surprised she is not wiped out. My brother and sister in law got into town on Thursday so we have been hanging out at my parents house with them a lot. We have been swimming a lot and the girls have been loving it. Jaylie loves swimming and I am so glad she is able to do it and feels good enough to. If she still had her hair you would never know she had cancer and was going through radiation right now. She jumps in, swims, bounces around, floats, plays Ariel games in the water, and does everything a normal 5 year old would. It is still so crazy that my little girl has brain cancer. It is crazy seeing her without hair every morning when I wake up. It is the first thing I think about when I wake up and is the last thing I think about before going to bed. It is hard to ever get a break from it. I can't even get through a movie without thinking about it. It is constant. It is hard. I am just so grateful that she is doing so well so far. Everyday will get worse, but it is great that she is doing as well as she is at this point. She is really emotional lately, way more than ever before. She cries a lot at little things that bug her or hurt her feelings. She is just a lot more sensitive. Her body is more sensitive too. All her senses seem to be heightened. Her sense of smell is crazy good, bad smells really bother her. Things hurt her a lot easier too. Before if she bumped into something she would be fine, but now it seems to hurt her real bad. I don't blame her for being more emotional, I am way more emotional than I've ever been before too. And she is actually taking it all a lot better than I would have ever thought.
Jaylie really likes her hair. She was watching my sister in law and my little sister get ready and fix their hair the other day. They noticed her watching them and they told me she looked at them for a while and then looked at herself in the mirror and then said that she loved having no hair and wants to keep it like that forever (they thought she would be sad about it). I can't believe her attitude, it really is amazing! This little girl is something else, she wows us everyday. She is a little miracle already.
She is on the appetite stimulants and is doing a much better job eating. She will actually ask for food now! I had to beg her to eat before and now she will actually tell me she is hungry and she wants food. Its crazy! I am loving it, hopefully we can get her to gain some weight in the next 2 months before chemo.
I didn't post on Father's Day. We had a really great day. Jaylie and Breklyn had lots of fun surprising Kip with cards, cupcakes, dinner, and more cards. They were so excited to make it special for him. Jaylie said "I wish everyday could be Father's Day and Mother's Day. I wish Mother's Day was every Saturday and Father's Day was every Sunday". So sweet! Later that day she told Kip, "I wish I had radiation on Sunday so staying really still during my radiation could be my present to you for Father's Day". Kip and I looked at each other and almost started crying. She has been the sweetest little girl lately.
A couple weeks ago, just before Jaylie's appetitie went way down, she said something really cute at her chemo appointment. We were walking out and she asked me if I had ever had cancer so I told her no and that she got it because she is special. She then said "I'm glad I got it because I get to do all this fun stuff and come here and get to eat this" (she pointed to her Amy's ice cream). She was smiling. I am glad she is happy about it. The other day at radiation, my mom said to Jaylie, "Ok, now you get to rest with your chin up and then after radiation..." Jaylie then butted in and said "I can rest with my chin down!" My mom was going to say we will go eat. We thought that was pretty cute. The thing she hates the worst about radiation is having to keep her chin up so far. That is the thing she complains about the most. She has to tip her head way up and it is uncomfortable for her. She does such a good job with it though and she realizes she has to so the radiation can get in the right spots.
We were playing in the play room the other day and Breklyn and Jaylie were playing doctor. Breklyn started talking about Jaylie's radiation mask and I told her that when Jaylie was through with the radiation she gets to keep the tweety mask and told her that she could have the other one (we have a white one here at the house). She said yea, but I want to wear the tweety mask and take a rest on the table like Jaylie does. She wants to be just like Jaylie. I took her to the doctor yesterday and she has a double ear infection and has to be on antibiotics. She gets sooo excited when she gets to take her medicine at the same time Jaylie does. She would ask for medicine once in a while when Jaylie had to take hers. She is glad to have medicine like sissy now. She is so funny and sure does love Jaylie.
Jaylie had an audiogram a couple weeks ago. One side effect of chemo is hearing loss, so they monitor it closely throughout all these treatments. This was her first appointment and she did great. She was really cute and talkative with the lady who did it. She has excellent hearing right now. Afterwards, the lady told me that Jaylie has a great spirit, a really great spirit and that she is just full of life :) That made me happy. Jaylie has gotten so much better with adults and strangers because of all of this. There is a huge difference in how she was in the hospital before and after surgery and how she is now. Huge difference. I remember in the hospital shortly after we found out her diagnosis, our oncologist said most of the kids open up pretty quickly and are not shy with them (the nurses and doctors) anymore. Everytime a nurse or doctor would come into her hospital room, she would turn away and not want them in the room. It is so different now. She has come a long way.
Sorry it was all so random. I wanted to write about these things so I wouldn't forget them. This is my journal through all of this, I am not keeping a separate one, it would be too much work. It is good for me to write and I think it will good to have for the future, for us and for Jaylie. I follow a couple caring bridge websites of other girls who were diagnosed with this same exact type of brain cancer when they were 5 too. One has been cancer free for 3 years now which is great, but it is so discouraging to read about the long term side effects from the radiation and to read about what the doctors say about her future and quality of life. I almost don't want to read it because it is too hard, too hard to think about the future. The other little girl's cancer came back and when it comes back with this type of cancer, it is not good. The doctors say it is fatal if it comes back. It breaks my heart to read what they are going through. They are doing treatments and drugs that have never been done in a child of her age, to try and fight it. I feel for both of them and realize that we will be in one of those positions down the road. I feel so badly for other moms and families who have to go through something like this. It is a club that no one wants to belong to.
Wednesday, June 22, 2011
4th Chemo Day
Today was Wednesday again and Jaylie had chemo again. We gave her the anti anxiety medication and she really did great this time. I tried to turn it into a fun game and told her to surprise Nurse Karen by being so brave and not crying at all. It helped! She still did not want to do it and got scared, but it was the best she has been yet, so that's good. Karen always asks Jaylie if she wants to help push the medication from the syringe into the tubing hanging out of her port and Jaylie never wants to. Today she did it twice and seemed to have fun doing it! That is progress! She gets her blood drawn every chemo day too and they do a full work up on it. She even helped put her blood from the syringe into a tube. She held the tube afterwards and asked if she could take it home. Funny girl! Hopefully soon she will be all used to this and will be fine with it all. Today was definitely the best so far. We had a photographer come with us today and take some pictures getting the chemo and then she came to radiation too. She did family pictures of us on Monday also, so when I get those back I will post them. She was great and so sweet to do this for us. I will talk more about her later when I get the pictures.
Jaylie is still loving her hair! I am so impressed with her. She does not like to wear hats, scarves, or bandanas. I put one on her everyday and she will wear them outside because she knows the sun should not get on her head but the second we walk through a door, she is ripping them off. They look so cute on her too so I try to encourage her to wear them, but they start bothering her after a while and they make her hot sometimes. I love her to wear them, but at this point I will do what makes her happy. I am just so thankful that she likes her hair. It is hard to see her like this, a constant reminder of her cancer, but it makes it easier knowing she is ok with it. It would be a lot worse if she always talked about missing her hair or that she wasn't pretty anymore. I am so glad we don't have to deal with that. We are really being so blessed in so many ways, its amazing. Jaylie is one special little angel.
She has been more tired this week. I noticed it a little bit on Monday and then she was quite tired on Tuesday. I had never seen her so tired as she was that day. Today was pretty good, I can tell she doesn't quite have her same energy level as before, but it is still pretty good. I am really amazed at how much energy she has. They say she will become more tired everyday from here on out and even after radiation is finished, she will feel the effects for a couple weeks after. We are halfway done today. We have 14 more treatments. Her last day of radiation is Wednesday, July 13th. Then she will have 5 weeks break to recover and hopefully gain some weight, then her real chemo rounds will start. I am not looking forward to that. She is still not eating much and has been gradually losing weight. We are lucky if we can get her to eat 3 bites of something. They goal is 10 bites, but they usually doesn't happen. Her taste buds are all out of wack. She had watermelon (her fav) the other day and she said it tasted like pepper. Poor girl, I don't blame her for not wanting to eat. She doesn't have an appetite and then everything tastes different and weird. They really don't want her losing weight right now because when the real chemo starts she will lose weight, so they are wanting her weight to stay up. They prescribed an appetite stimulant medication for her. I gave her one dose before dinner and I didn't notice a difference. I forgot to give her the zofran for her nausea today, so that maybe played a role in it. I made her take a bite of broccoli and she chewed it for a while and then threw it up. I felt bad for making her eat it because I think it triggered her throw up. I usually don't forget to give her her medicines. I had it all ready in the syringe and everything and then forgot about it. She is doing really well with the nausea if I give her the zofran before radiation. She is still amazing during radiation, we are so proud of her.
When the check her blood they look at a few different things, one is the ANC, which stands for Absolute Neutrophil Count. The ANC is the real or actual number of white blood cells that a patient has to fight an infection. Hers has been dropping every week but has stayed above the normal number (1500), but today it was just below normal (1470). It will probably keep dropping, but it is not too bad yet. During the chemo rounds that will come after radiation, it will sometimes get down to zero. So we will take that number now :)
Thank you for all the prayers and support from everybody. We really feel the prayers working and are being blessed in so many ways. Thank you!
Jaylie is still loving her hair! I am so impressed with her. She does not like to wear hats, scarves, or bandanas. I put one on her everyday and she will wear them outside because she knows the sun should not get on her head but the second we walk through a door, she is ripping them off. They look so cute on her too so I try to encourage her to wear them, but they start bothering her after a while and they make her hot sometimes. I love her to wear them, but at this point I will do what makes her happy. I am just so thankful that she likes her hair. It is hard to see her like this, a constant reminder of her cancer, but it makes it easier knowing she is ok with it. It would be a lot worse if she always talked about missing her hair or that she wasn't pretty anymore. I am so glad we don't have to deal with that. We are really being so blessed in so many ways, its amazing. Jaylie is one special little angel.
She has been more tired this week. I noticed it a little bit on Monday and then she was quite tired on Tuesday. I had never seen her so tired as she was that day. Today was pretty good, I can tell she doesn't quite have her same energy level as before, but it is still pretty good. I am really amazed at how much energy she has. They say she will become more tired everyday from here on out and even after radiation is finished, she will feel the effects for a couple weeks after. We are halfway done today. We have 14 more treatments. Her last day of radiation is Wednesday, July 13th. Then she will have 5 weeks break to recover and hopefully gain some weight, then her real chemo rounds will start. I am not looking forward to that. She is still not eating much and has been gradually losing weight. We are lucky if we can get her to eat 3 bites of something. They goal is 10 bites, but they usually doesn't happen. Her taste buds are all out of wack. She had watermelon (her fav) the other day and she said it tasted like pepper. Poor girl, I don't blame her for not wanting to eat. She doesn't have an appetite and then everything tastes different and weird. They really don't want her losing weight right now because when the real chemo starts she will lose weight, so they are wanting her weight to stay up. They prescribed an appetite stimulant medication for her. I gave her one dose before dinner and I didn't notice a difference. I forgot to give her the zofran for her nausea today, so that maybe played a role in it. I made her take a bite of broccoli and she chewed it for a while and then threw it up. I felt bad for making her eat it because I think it triggered her throw up. I usually don't forget to give her her medicines. I had it all ready in the syringe and everything and then forgot about it. She is doing really well with the nausea if I give her the zofran before radiation. She is still amazing during radiation, we are so proud of her.
When the check her blood they look at a few different things, one is the ANC, which stands for Absolute Neutrophil Count. The ANC is the real or actual number of white blood cells that a patient has to fight an infection. Hers has been dropping every week but has stayed above the normal number (1500), but today it was just below normal (1470). It will probably keep dropping, but it is not too bad yet. During the chemo rounds that will come after radiation, it will sometimes get down to zero. So we will take that number now :)
Thank you for all the prayers and support from everybody. We really feel the prayers working and are being blessed in so many ways. Thank you!
Spy Kids 4!!!
Pat is a wonderful friend of mine that has a daughter, Cassie, who is the photo double for the lead girl character in the movie Spy Kids 4 that is coming out in August. Rowan Blanchard is the name of the girl who plays Rebecca (the girl spy kid) in the movie. Pat talked with Rowan and her parents about having Jaylie meet them. They were really sweet about it and said they would love to and instead of coming to our house, they said we could go to the set where they were filming. Pat called and surprised us with this fun news and Jaylie was sooo excited! She was excited that she was going to be able to meet Rowan and Mason Cook (the boy spy kid in the movie). She watched the trailer a bunch of times and then 5 more times on the way down there to meet them. The movie was filmed in Austin this past fall and winter but they are doing last minute shoots with Rowan and Mason. My mom, Jaylie, and I went and it was awesome! We got to see the sets, some clips from the movie, and watched them do some of the filming. Jaylie even got to sit in the seat next to the director, Robert Rodriguez! It was really neat. Rowan and Mason are adorable kids. They were amazing with Jaylie and are both so polite and great with people. Rowan held Jaylie's hand everywhere we went and was so cute talking with her. I was super impressed because she is only 9, truly an amazing little girl. Jaylie really took to her and loves her! Both Rowan and Mason's parents are great too and took time out of their busy schedule to talk with us and make us feel comfortable. They are all really good people and I am grateful that we were able to meet them and have this awesome experience. Jaylie had a blast and loved it!! She is getting more and more tired lately and she was quite tired last night when we went, but she did good and had lots of fun. She is so excited to see the movie (and my Mom and I are too)!! There was so much talent there it was amazing, you don't realize all the stuff and all the many people that go into making a movie. It was wild to see it! A big thank you Rowan and Mason (and their parents) for having us and being so awesome, and to Pat for thinking of Jaylie and making this happen!!
Mason, Jaylie, and Rowan
Mason playing peek a boo with Jaylie and her Hello Kitty, which she loves and takes everywhere! Its her comfort thing.
Jaylie with the prop dog they used in the movie. This is a robot dog and looks sooo real, even up close. They used this and a real dog in the movie.
Sunday, June 19, 2011
Hair is Gone
So Jaylie's hair was getting really bad and falling out a ton and getting everywhere, so she decided it was time to buzz it off. We have her options of cutting it shorter, coloring it, really whatever she wanted. She wanted it all off though. She has had such a great attitude, a couple weeks ago I was washing her hair and she was not liking it. I told her that whenever her hair falls out, we wont have to wash it, brush it, blow dry it, curl it, flat iron it, nothing! She was so excited and said that she wanted it to all come out right now. We have been preparing her for this and we are amazed at how well she did. It has been the hardest thing as her parent seeing chunks of her hair come out. It has been a lot harder for Kip and I than it has for her. I think it will be easier now that it is all gone, although it is sad now because every time we see her we have a constant reminder of her cancer and what she is going through. We are seeing so many blessings and little miracles in our lives though and know its from all the prayers. We thank you for them because we know that the only reason we are getting through this is because of your prayers and because of God watching over us.
We asked her if she wanted to cut it really short, like a inch or two all over and wear it cute and spiky or if she just wanted to buzz it all off. She goes "Bzzzzzzzz" and ran her hand over her hair. She has seen Daddy do it before and that is what she wanted. She did not want to mess with her hair anymore.
She laughed during some of it because it tickled. Her head and ears are really sensitive from the radiation, so it hurt her a couple of times near her ears. She cried a little but got over it fast.
We were in a hurry afterwards because a friend came over to sit the kids so Kip and I could go out on a date, so we tried to hurry. I didn't get a great one of just her, but I will soon and will post them. She went and looked in the mirror afterwards and smiled. She loved it. My parents came and picked her up later last night and took her to their house for a sleepover. She was so excited about that. I asked my mom if she had said anything about her hair or anything and she said that Jaylie seems to really like it. Then later she was with my sister Kindra and was looking in the mirror and said "I love my new hair. I look good with no hair!!!"
We are so proud of this little girl! She really couldn't be any more amazing or have a better attitude. She amazes us everyday and is such an example to us. She looks so cute!
Kindra took this next picture :)
This was on Thursday. She constantly had hair all over her. I would try and get it off her back but a minute later it was all over it again. You would just touch her hair and a big chunk would come out. Friday was even worse. I am glad we decided to buzz it on Friday, I don't think I could have handled it falling out even more.
This was her pillow after she woke up in the morning. This was on Monday. Everyday it got twice as bad.
This was taken on Monday also. By Friday, it was huge chunks coming out.
Jaylie wanted to cut Daddy and Papa's hair, she had fun doing it. After his was all buzzed off, she kept telling him how good he looked :) She is so sweet!
Its hard to see in pictures, but she had bald spots all over. Her hair was everywhere. Everytime she sat down or layed down, it would be all over when she got up. It bothered her that her hair was everywhere.
Cutting Papa's
Kissing Papa's head
We put her hair into a couple pony tails and then cut the pony tails off. I have them in a baggie to keep.
I took these pictures, it was so hard for me to see this. I started crying but knew I had to stop so she wouldn't think that this was a sad thing. We wanted to keep it fun and happy. If she weren't able to see me I would have been balling. I will miss her with hair but she is still so beautiful. She has such an amazing attitude and spirit. I love this little girl!
She is still quite protective of her stiches, so we went slow on that part. It is healing up really well and is kind of scabby. Hopefully it will just be a scar soon.
Papa, Jaylie, and Dad
She loved that she looked just like them
We are so proud of this little girl! She really couldn't be any more amazing or have a better attitude. She amazes us everyday and is such an example to us. She looks so cute!
Kindra took this next picture :)
Jaylie with Aunt Kindra and Uncle Kade, on the way to Nana and Papas.
Saturday, June 18, 2011
Chemo Day
Jaylie has chemo on Wednesdays, either before or after her radiation (it just depends on the availability). These pictures were taken on Wednesday, the 15th of June. This was her 3rd chemo treatment. The 2nd one did not go too well so we gave her some anti anxiety medicine for this one. It went a lot better but she was still pretty scared. My mom took some pictures on her phone, so they are not good quality, I apologize. This one was taken right before they poked her port. They stick a needle with a tube attached to it into her port and then they can draw blood and give the chemo medicine.
This picture is sad, poor girl. The giggles soon turn into fear. I have to hold her hands and stay close to her so she doesn't move a lot when the needle is going in. I am wearing a mask so her port doesn't get infected when it is poked.
This is after it is poked and accessed. You can see the tube hanging down. Right after it is accessed, she is fine. She has been liking to watch a movie while we are waiting in the room. They have an x box in all the rooms so the kids can watch a movie on there or play games. When the nurses and different people come in to talk with me, she gets mad that she can't hear it as well, so she tells us to be quiet a lot. Most of the time she is polite about it, but we are working on it :) She really enjoys her movie time at the hospital!
Jaylie loves this lamb!
Thursday, June 16, 2011
Crew's Doc Band Graduation
Crew graduated out of his doc band! He had torticollis when he was born and it caused plagiocephally, which means he has a flat spot on one side of his head in the back. This doc band helped to round his head out. It definitely made a big difference but I wish it would have gotten a little more round, it is still a little bit flat. But I am glad he is done, we had to go for appointments every two weeks and they were down town. Once all this happened with Jaylie, his head seemed so insignificant. But I'm glad he finished and he is done. He is always such a good boy at his appointments and his tech, Amy, was awesome, all my kids loved her!
Amy would always comment on his faux hawk :)
He was so good when we put this over him. They have to put this on the babies and get the images they need of the shape of his head.
Amy always made faces and talked in this cutest little voice the kids loved.
Girls keeping busy while trying to make Crew stay put for the pictures.
Getting measured. He hated this!
Playing waiting to get pictures.
One last picture of my little cutie in his helmet. I started to actually like it on him, I love this kid!
Wednesday, June 15, 2011
Update
Last week Jaylie did pretty good. She had a couple days of nausea but no headaches and no other symptoms really. From the beginning we were told that in the third week of radiation, more symptoms would appear and get worse. Its so true. She started her third week this week and everyday she gets worse. You can just tell that she doesn't feel good. She is a tough little girl and doesn't complain very often. I have to continually ask her how she is feeling because she won't tell me until its too late and she is already throwing up. I can usually tell when shes not feeling well though. Her hair is falling out a lot more now, especially when I brush it. She woke up this morning and had hair all over her shirt. The radiation oncologist said that by the end of this week it will be coming out in clumps. This is so hard. Yesterday Jaylie had a clip in her hair and it was falling out and she took it out and looked at it commented that her hair is falling out. She doesn't seem too bugged by it, but it is sure hard on Kip and I. It just makes it seem more real, she will look like a true cancer patient soon and it is heartbreaking. A lot of times I feel like I am in a dream still and none of this is real. The hair loss wakes me up from the dream fast. I hate it. She is also getting sicker everyday. I have to give her her anti nausea medicine before we go to radiation now, because if I don't she is quite sick afterwards and will throw up. She does pretty good with the nausea as long as she has the medicine in her. She is getting radiation on her head and spine and it causes a sunburn in those areas. Some spots on her head and behind her ears hurt a little bit and are red and she has started telling me that her back hurts. It looks like she has a slight sunburn all down her spine. It will get worse as the radiation continues. She is not eating much either. The chemo and radiation has caused a bad taste in her mouth, they say its metallic tasting, so she never really wants food or drinks. I have to try really hard to get her to eat. She will usually do breakfast pretty good, but thats it. If anyone knows Jaylie, you know this is so not like her. She loves food and loves to eat, so its weird. We are hoping she won't lose too much weight. They say if we can get her to gain 5 pounds before the real chemo rounds start that would be great. She has lost 2 pounds so far, but hopefully we will be able to figure out how to get her to eat. Dr. Brown said she needs twice the calories that a normal 5 year old needs for her body to recover properly. Hopefully she will get used to the bad taste and start eating more. She spits a lot now too because of the taste, something she has never done. Her senses are more heightened and her body is more sensitive. Hopefully she won't get feeling too much worse.
She is still doing great in radiation and being so still, it is amazing. She is so awesome. She did a lot better getting her chemo this week. Last week she freaked out and 3 of us had to hold her down while the nurse put the needle in her port. It was so sad, it was so hard not to just break down and cry. It took my everything to hold it together for her. This week was much better. They prescribed her an anti anxiety medication and it helped quite a bit. She was still scared but it was fine, much better. That was a relief for me because it had been an emotional day for me already and I knew I couldn't handle it if it were bad again. Jaylie has been in good spirits, playing with her Hello Kitty doll that comes to all the appointments with her and doing little coloring activities with my Mom (who comes to all the appointments with me, she is AMAZING!!). Jaylie laughs a lot waiting for the doctors and actually enjoys waiting alot! She is an amazing little girl and is such a great example to me. I am so honored to be her mother and to be able to teach her and raise her.
On another note, my little guy Crew (10 months old) took 9 steps yesterday! I can't believe how fast he is growing up. We are so thankful to have this little guy in our family. Our pregnancy with him was a huge surprise and I have really bad pregnancies and recoveries so I was not happy about it. A few months into the pregnancy I started getting used to the idea of a baby and was excited. Now I know why we got pregnant when we did. It was Heavenly Fathers will, He knew we needed Crew to help get through this. I am so thankful I have this little guy. He is the funniest baby ever and laughs more than any other baby I know. He is always happy and smiling and laughing. He is so cuddly and sweet to me, he loves his Mama! His laughter, smile, hugs and kisses bring me so much joy and are good therapy to me right now (I know this sounds weird but its true :) Kip agrees too). Jaylie adores Crew and loves him so much. She is so sweet with him and he is with her too. Breklyn loves Crew and is the sweetest little thing too has the cutest little voice you have ever heard. She looks up to Jaylie and wants to be just like her. I am so thankful for each of my family members and that we are all 5 in this together.
She is still doing great in radiation and being so still, it is amazing. She is so awesome. She did a lot better getting her chemo this week. Last week she freaked out and 3 of us had to hold her down while the nurse put the needle in her port. It was so sad, it was so hard not to just break down and cry. It took my everything to hold it together for her. This week was much better. They prescribed her an anti anxiety medication and it helped quite a bit. She was still scared but it was fine, much better. That was a relief for me because it had been an emotional day for me already and I knew I couldn't handle it if it were bad again. Jaylie has been in good spirits, playing with her Hello Kitty doll that comes to all the appointments with her and doing little coloring activities with my Mom (who comes to all the appointments with me, she is AMAZING!!). Jaylie laughs a lot waiting for the doctors and actually enjoys waiting alot! She is an amazing little girl and is such a great example to me. I am so honored to be her mother and to be able to teach her and raise her.
On another note, my little guy Crew (10 months old) took 9 steps yesterday! I can't believe how fast he is growing up. We are so thankful to have this little guy in our family. Our pregnancy with him was a huge surprise and I have really bad pregnancies and recoveries so I was not happy about it. A few months into the pregnancy I started getting used to the idea of a baby and was excited. Now I know why we got pregnant when we did. It was Heavenly Fathers will, He knew we needed Crew to help get through this. I am so thankful I have this little guy. He is the funniest baby ever and laughs more than any other baby I know. He is always happy and smiling and laughing. He is so cuddly and sweet to me, he loves his Mama! His laughter, smile, hugs and kisses bring me so much joy and are good therapy to me right now (I know this sounds weird but its true :) Kip agrees too). Jaylie adores Crew and loves him so much. She is so sweet with him and he is with her too. Breklyn loves Crew and is the sweetest little thing too has the cutest little voice you have ever heard. She looks up to Jaylie and wants to be just like her. I am so thankful for each of my family members and that we are all 5 in this together.
Gifts from Olivia
Olivia is the front desk lady at radiation. She is super sweet and so fun to talk to. She went through breast cancer a while ago and is a survivor! She started working at Austin Cancer Centers after her experience, which is great because she can relate to the patients. She is the nicest! She made Jaylie a tweety bird dress and matching purse and also made Breklyn a purse. She knows Jaylie loves tweety and then she asked what colors Breklyn likes because she didn't want her to feel left out. It all turned out sooo cute! Jaylie loves it and was so excited and it looks so cute on her. Thank you Olivia! It means a lot to us!
Jaylie eating a chicken nugget. She hasn't been eating anything and one thing she will eat ok is nuggets from Wendy's. She actually ate 3 this day which is awesome. I have been trying to get her to eat really healthy through all of this but she won't eat anything, so whatever she wants to eat I will let her. She will ask for something and then only take one bite, so when she actually likes it, I let her eat it.
Olivia giving the dress to Jaylie. She wore it the next day :)
Jaylie and Olivia
Doesnt she look so cute in this dress?!!!!
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