Friday, January 27, 2012

Great Day!!

Jaylie is doing great and feeling well. Ive been meaning to post for a while now, it's been a busy week though. We got home from the hospital on Saturday after being there since Monday. It was our longest hospital trip during treatment. Her brain surgery hospital stay was the only one longer. We just feel soooo blessed that we only had one fever stay and that it was less than a week. When your in there it feels so long and it was so hard being away from the kids, but we are thankful it wasn't worse and that she didn't have to be admitted on any of the other rounds. She is still not eating hardly anything. Hopefully it will pick up soon, it has gotten a little better, but not much. Definitely the worst and longest it's been for her not eating. She is getting too skinny, but will gain weight fast I'm sure. It's been a struggle getting her to take her meds the last few weeks. Thankfully she will be able to stop one of them soon. She had an appointment on Thursday at the clinic and her labs were good. Her counts were low but not low enough for any transfusions. Her body is on its way up! We still have to be careful with her and cautious of germs etc. They said for 6 months to a year after finishing treatment their immune systems are compromised. Not near as bad as they are during treatment but it's not as good as other kids. She will be fine to go to school and church again but if there are sick kids or bad stuff that has been going around we will prob keep her home:) Her MRI is still not scheduled, they should be calling me on Monday hopefully for that. I guess they are booked up for kids that need anesthesia, so it might not be till the end of February till she gets it. We have so many appointments for different things this month so we are going to have Jaylie start school in March I think. She is quite excited! Kip and I had an appointment yesterday with the neurologic psychologists at the Live Strong clinic. At this clinic they take care of all the cancer patients who are done with treatments. Its right next door to the blood and cancer clinic which is great. They didn't want Jaylie there so it was just Kip and I. They just asked a bunch of questions about her and will assess her in the next couple weeks. It will be two different appointments that are 2 1/2 hours each. They will talk with her, do iq testing, test her processing speed, watch her do puzzles and school work etc. They said its usually pretty fun for the kids. We can't go back there with her, but I think she will do great. They will do this same testing with her every year and compare the results from the precious ones to see if she has late effects etc. We will use their report for school and if in the future she needs special help they will have these tests to base it off of and see what she needs. So it's a good thing to be doing it. I thought it was mainly just radiation kids who have late effects but they said about 60% of just chemo patients (no radiation) have some effects to some degree. It's just much higher for radiation kids. Every kid is different and they can't predict anything. It's hard not knowing what the future holds. Kip and I are just try not to think of what could be with her, we are just thinking the best and having faith that she will come out of this without too many effects. We know with God all things are possible, so we know that He can make her not have any but if it's His will that she does have some then we will make the best of it and will know its in the plan for her. Anyways, I could go on forever about side effects from radiation. I hate radiation more than anything ever. One of these days I will explain a little better about it and the effects. But for now we just try not to dwell on it and try our very best to have faith and hope that the cancer will never come back and that she have the least amount of late effects as possible.

Anyways, today was the best day!! Jaylie has been so excited for a few weeks now for today. We had a lunch party with Advocate MD, now called The Doctors Company, who is the company sponsoring Jaylie in her make a wish trip!! We met Scott, one of the Make a Wish workers at this company today and they welcomed us and were so amazing! It was just Jaylie, Kip and I, the little ones stayed with my friend. We had a great time eating lunch, opening presents from them and having cake. They got her favorite food and favorite kind of cake too! She loved the presents, they were so generous! They were so amazing and nice and it was such an honor to meet them. We will forever be thankful for them and all that they are doing for us. We are so grateful for the Make a Wish foundation too, they are amazing. I will post more about our lunch visit and pictures from it soon. It was amazing!! Thank you Advocate MD!!!!! You made my daughters day!!!

Here is a sneak peek photo from today from my cell. She got this darling Minnie mouse that talks and her bow lights up:) Jaylie loves it and has been carrying it around all day. She fell asleep snuggling it tonight.

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Friday, January 20, 2012

Still in Hospital

Jaylie seems to be doing worse everyday this week. Today has been the worst she has felt. Her fever is fine, it's only in the 99's but she just doesn't feel good. Her mouth sores are horrible and are all over in her mouth, throat and on the outside of her mouth. The doctors say its hurts like ten times worse than the kind we get in our mouths, and she has them all over hers. So I'm not surprised shes not feeling well and she's whiny. They have some medicine she can swish around that helps to numb them but she hates it and its such a challenge to make her take it. It does help though. She's been hard to get to take any of her meds this week. She has been mean and short with me and all the nurses and doctors. She has thrown a couple fits today too, putting her head under her blanket and crying because she wanted the doctor to go away and not check her. She never throws fits anymore, so it's been a challenging day to say the least. She won't eat or drink anything either. I got her to eat a couple bites of yogurt and a couple bites of cream wheat (more than she has eaten in a while) and she threw it right up. She has been needing zofran for her nausea every morning but didn't complain about it this morning so I figured she was fine. After she puked I asked her about it and she said it was hurting all morning. I've had so many talks with her about telling me her symptoms, and she still doesn't tell me sometimes. I knew for sure we wouldn't be able to go home today (because she had fever yesterday afternoon) but was hoping for tomorrow and that's not looking too good now. Hopefully she will feel better soon so we can go home. Good thing this is the last round of this or I would be having a really hard time right now. It's so hard seeing her like this and seeing her suffer. I hate it more than anything. Knowing this is the last time we have to deal with this low count stuff makes it easier and more ok. We have been soooo blessed that she hasn't had this bad of symptoms till her last round. It's almost all over, couple more weeks. Since we have been here in the hospital we missed our weekly appointment at the clinic. We were sad not to see her nurse, Karen. Jaylie loves her and it's been a while since we have seen her bc she went to part time. I was hoping to get a date for Jaylies next MRI, I want it to be over with so bad. Hopefully next week she will be fine and totally herself. She goes in spurts being nice to me though. At one point today she snuggled with me and gave me lots of loves. I needed it after her being so snappy and mean :)

Anyways, just keep praying for Jaylie. She will get better with time, I really shouldn't complain, it just helps to get it out.

Also, I just found out yesterday that my nephew Briggs, the one with the heart problems, has to get his feeding tube put back in because he is not gaining weight. It will be more challenging now to keep it in now that he's bigger and more mobile. Hopefully he will gain weight and get it out fast. And They won't do surgery until he gains more weight. Prayers for him are appreciated too.

I also just wanted to say how thankful we are for all of you, for joining us on this hard journey, for caring and for praying. It has helped us in so many ways, helped us more than you could ever know. Thank you!

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Pictures from this week

I know these are horrible quality, I don't have my camera just my phone. So sorry.

Clowns that came around to cheer the kids up on Tuesday. Jaylie lives when people do stuff like this. I am so thankful for them and others like them who volunteer and give of their time to help these kids.

Jaylie half dressed, half in her Jammie's:) with a mask on her and her lamb.

Jaylie just before going to bed listening to Dad do skunky. It's a skunk puppet that she is obsessed with and Kip puts it on and does a funny voice. She loves it and so do other kids!

Pet therapy from Wednesday. One of her favorite things ever.

Breklyn helps Jaylie pull her pole. It was so sweet that she wanted to help. She felt so important too:)

Crew and Mommy. I love this kid, he is so funny!

A juggler who came to her room yesterday. He was really good!

He was funny too.

She hasn't been feeling well enough to do too many crafts this time but she did make me this birthday card! I love it!

My mom sent this picture of the kids at her house. They just got out of the bath :) I miss them!

Pet therapy from today.

 Mom and Jaylie in masks because she is neutropenic. She hates wearing masks and it made her feel better that I was and her lamb was.

 Low counts = Lots of bruising

 Antibiotics they gave her for her fever.

 They had a movie night. They always have popcorn there, but this time an organization sponsored it and there was popcorn, pizza and jumbo sized movie candy boxes. It was so fun! It was the first time Crew sat through a movie. He looked so big in his own chair eating his own popcorn. It was Kung Fu Panda 2. They gave everyone drawstring bags with a homemade blanket, Kung Fu Panda 2 coloring book and crayons. Even Breklyn and Crew got one. It was really neat and touching.

 Eating some ice cream in Jaylie's room. Loved that Crew has his own but wants Breklyns!

Thursday, January 19, 2012

Hospital Birthday

We are back in the hospital after being released yesterday. We left around 2:30 yesterday and Jaylie got fever again around 7 last night. So we stayed the night in the hospital again. Yesterday the doctor said there was a good chance (40%) she would get fever again but said we could go home as long as we didn't mind coming back if her fever came back. She had been fever free for over 24 hours so we thought for sure she would be fine. But 4 hours after we got home we headed back:) Crazy timing, we probably should have just stayed but it's ok. It was nice getting out of here for a few hours:)

Luckily she doesn't have an infection or anything. Her fever is just a neutropenic fever, just from
her being neutropenic - counts being low. We just have to wait it out here until her counts go up more. She is not feeling well at all and doesn't want to eat or drink. She has lots of mouth sores that hurt her really bad so it's tough to get her to take her meds or eat and drink. She even got some sores on the outside of her mouth this time which she has never had. She just wants to lay down and watch tv. She doesn't want me to touch her or talk to her much, so I've just been letting her do her thing so I don't bother her and make her mad. I just went and snuggled her and she was fine with it and actually gave me eskimo and butterfly kisses. I loved it! If its her idea to interact with me then shes fine:) It's so sad when she feels so yucky because she doesn't act like herself.

Although my birthday was crazy with being in here, going home, coming back and not having Jaylie feel too good, it was a great one that I won't ever forget. I'm still sad about being 30 now, but I know this year is going to be great. I felt so special yesterday and am thankful for all the texts, emails, messages, gifts, and flowers I received. It really made my day! My parents brought Breklyn and Crew up yesterday along with some yummy Chuy's (my fav Mexican restaurant) for lunch. It was great! Then when we got home yesterday there were some birthday surprises on our porch, it was awesome! Then my mom was so kind to take Jaylie back to the hospital so Kip could take me out to dinner. I felt guilty not being with her but my mom said she was fine with her and was happy. It was nice having some time alone with Kip, it had been a while. After that we just came up to the hospital to be with Jaylie. Kip and my mom left and J and I went to bed. It was a great day. I loved being able to spend it with Jaylie and loved being able to see the two little kids, I miss them soooo much when I don't see them all day. I hate it. Thank you to everyone for making me feel so special on my 30th! Definitely was not the way I had planned for my birthday to go, but it was awesome and I couldn't have asked for a better day - maybe except her getting fever again :-) I look back at the last year of my life and it was definitely the hardest year I've ever had but also was the year with the most blessings I've ever had. We have been so blessed in so many ways throughout this journey with Jaylie. I have definitely grown closer to my Heavenly Father this past year and have felt Him more in my life. I have grown and learned soo much too. I always have treasured my family and my cute kiddos but I do so more now. I've learned to live in the moment and just enjoy life with those I love. I've learned patience, love, hope and compassion. Everyone says your 30's are your best years, I hope that's the case and I hope they go by slower than my 20's did :-) Here's to being 30!!

 Beautiful flowers I found on the front porch. Thank you!!

Tuesday, January 17, 2012

No Fever Today!

Jaylie has been fever free all day today so we are hopefully going to be able to go home tomorrow. The highest her temp got today was 99.9 and they consider anything over 100.5 a fever. Mostly its been in the 98s. The blood cultures are still negative but still could come up positive for another day, which I'm sure they won't :) She got a platelet transfusion this morning, they were super low which I expected because she has bruises all over her body. She will get a blood transfusion tomorrow morning before we hopefully leave. Her ANC is zero so she doesn't feel great and is super tired, but nothing hurts, so that is good. She has just been laying around most of the day. She wanted to go to the playroom today but they advised her not to because she is so vulnerable to getting sick. So we went to the library and picked out a couple movies. She had to wear a mask, which she hates, but she got used to it pretty fast.  She usually doesn't go anywhere when her counts are low so I don't make her wear masks too often. To make herself feel better, she put one on her stuffed lamb and wanted me to wear one too. We played bingo today (you are able to stay in your room and play through the tv) and she won twice. They came around with a prize cart for winning and she chose a gift for Breklyn and then the little lamb that wore the mask. It always amazes me how sweet she is to always think of her sibblings. I miss little Crew and Breklyn. Kip took off work today to watch the kids and my Mom has them tonight and tomorrow. They are in good hands and hopefully I will be able to see them tomorrow! Its my birthday tomorrow, I will be 30. Kinda sad about being 30 and getting older. I knew Jaylies counts would be low on my birthday but wasn't expecting to be in the hospital for it. Its ok though, I enjoy one on one time with Jaylie. And the best present will be getting to come home and having this be our last over night stay ever!! I told Jaylie we can't come back here, only for MRI's and other tests :) Jaylie is excited about my birthday tomorrow and said she wished we were at home because she has some surprises for me in the morning. But I explained she can do it another day or later tomorrow. She is so cute and tries so hard to be secretive when she talks to Kip about it. She is also so very excited for her birthday coming up. She will be 6 on Feb. 6th.  She is having a hello kitty party and really can not wait. She tells me almost every day that she is just too excited and she really can not wait. Its pretty cute seeing how excited she is about it, I love it. She even wanted to make her own invitations. She wrote them all out and chose the wording and decorated them and everything. She has been working hard on them and it has taken a lot of her time because she gets so tired now, it takes her longer to do stuff. They are pretty cute though!

Anyways, she is sleeping peacefully again. It was nice not to have to wake up every 2 hours and worrying about her peeing enough. It still wasn't a very restful night because they were in here taking her vitals and temp a lot, but I can't complain. We have been sooo blessed these last few months. The end is so close, only a couple more weeks and her counts will be up and her MRI will be over!

Monday, January 16, 2012

First Fever

I really can't believe Jaylie has made it all the way to the very end of treatment without a fever. She went through 5 rounds of chemo that knocked her counts and immune system down to nothing and didn't get fever. Now on her 6th and final round she got one. I hate that she has one but I am so thankful this has been her only one. A lot of kids I know get fevers almost every round. It's very normal and I was actually expecting Jaylie to have them more. Before all her treatments started her oncologist said to prepare to be in the hospital with fevers about half the time.  Some kids are in here more, some kids are in here less. I was prepared for the worst, thankfully I didn't need to be.

Anyways, I took Jaylies temp today and was pretty surprised she had one because she hadn't had one before. We have to come up to the hospital if it's 100.5 or more, so we are here at the hospital now. It's our first time staying on 4 north and not getting chemo. It was also the first time she got her port accessed outside the cancer clinic. She didn't do too well with that. I forgot to put the emla cream on that makes it numb for when the needle goes in. They had to put it on her here in the hospital and they use a sticky window to go over the top of it, at home I use ceran wrap bc it stays on but doesn't hurt to pull it off. She hates this sticky stuff! It's been her worst thing through all she's been through. She was not happy when they used that and then had to take it off 30 minutes later to poke her. Then they use a much larger sticky window to go on top of her accessed port to keep it germ free and protected. Karen, her nurse at the clinic, knows how much Jaylie hates getting the window off so she uses a small one over her port. Jaylie has never had the large one so she was not happy once again when they used that. She asked for the little one but they wouldn't do it. Hopefully it won't be too bad to get off, I know she will be scared to death about it though. She is doing really well though and is feeling good. They gave her Tylenol and her temp has gone down. They are testing her blood and it could take up to 3 days to get the blood cultures back. Hopefully it's not an infection, we are guessing not because she has no other symptoms. They put her on broad spectrum antibiotics and we will have to stay here until she is fever free for 24 hours. Who knows how long that will be. They haven't come back with the results of her labs yet so I'm not sure what her exact counts are but I know her ANC is low so she doesn't have an immune system. Hopefully she won't have fever in the morning and we can go home soon, but we could be here a while.   She is sleeping peacefully now and it will be nice to not have to wake up every 2 hours to have her pee like we do for chemo.

Looking back at the day, I am not surprised Jaylie had a fever. She was horrible today, so fussy and grouchy. She was mean and just wanted to be alone. I tried having a lot of patience with her because I knew she wasn't feeling good bc her counts are low but it was hard.  She usually just lays around and rests and wants to be close to me or on my lap, but today she was just mean. She was mean to Breklyn too and she usually loves her. She was just not herself today. She even told me and Breklyn that she wanted Breklyn to go away and not come back. It was sad. She had lots of alone time per her request. I know she doesn't feel good so I don't blame her.  She was much nicer to me tonight though. She is usually such an angel. I love her so much. I am so thankful I am her mom, she's the best little girl anyone could ever ask for. I will keep you posted on how Jaylie is doing. Thank you for your prayers!

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Sunday, January 15, 2012

Some Pictures

I love this!!! Jaylie loves it too, she smiled so big when I showed her!

Jaylie with her new friend Shelly. She came up and visited Jaylie in the hospital. She is an amazing person who has been through so much herself. She had a horrible bike accident when she was a child and almost didn't make it, then had thyroid cancer and a stomach problem she had to have major surgery for. She heard Jaylies story and wanted to meet her. Jaylie loved her!

Jaylie in her headband she got from Shelly:-)

Breklyn and Crew up at the hospital visiting Jaylie. They love riding in the wagon and playing in the play room. Breklyn never wants to leave!

Jaylie showing her Papa the book she wrote in the playroom. They had oil pastel colors and she wrote and illustrated a darling book.

Sugar cookie, her new build a bear. Hearty, the heart bear she got at the cancer clinic had a recall so we turned her in and got this one. Jaylie was sad to see Hearty go, I have pictures and will blog about that another time. She has come to love this one though.

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Saturday, January 14, 2012


I've been wanting to update for a while now but just have not found the energy. I really can't wait for this round to be over and to have Jaylie feeling better again. I am so tired mentally and physically of all this. Jaylie has thrown up quite a bit this week and it's so sad to see. She is amazing because right when she's done she seems fine and bounces back so well. If I were in her position I would be complaining all the time. She's pretty amazing. She had an appointment on Friday and needed blood and platelets. We were there all day and it was a long day. I didn't sleep well the night before and was so tired. Jaylie was excited to be there all day though, she really enjoys doing crafts there. I need to take some pictures of the craft room and all the fun stuff they have, it's pretty cool. Jaylie is always a busy body there:) She got her last dose of vincristine too, which is awesome! Hopefully she won't be so constipated when all this is over. That chemo really constipates the kids, I hate that. She had to get Tylenol and benedryll too as a precaution against a reaction to the blood or platelets. Jaylie never gets knocked out from medicine that is supposed to make you sleepy, not benedryll or even phenergan. She surprises the nurses and has pretty good energy most the time. Today was nice weather so we played outside and Jaylie rode her bike with Kips help (it doesn't have training wheels and we can't teach her when her counts are low because it's so dangerous) and she rode her scooter. I was really surprised at how well she can still ride her scooter. Her balance was good and she was totally fine. It seems like lots of the chemo kids and especially brain tumor kids have a hard time doing those types of things. Her counts are low and are still dropping so I was surprised she felt well enough to ride it too. She was flying on it getting way ahead of all of us. We kept telling her to stop and wait for us. It's great that she's feeling so well. Next week will probably be a different story.

We have started talking about her going to Kindergarten when her counts go up, she gets a little rest/break and she is done with certain appointments. I have mixed feelings about her going to school. She is excited and I'm sure she will do fine but I'm scared to death. I worry about her getting into the routine of it because she has never been before, I worry that just jumping right in will be too much for her as she is recovering still. I worry about her making friends when all the other kids already know each other. I worry about how she will be treated and her getting her feelings hurt. I worry about her getting tired easily. I worry about the germs at school. I worry that she will come home sad or frustrated or hurt. I worry about it so much that Kip and I have both said that maybe we should wait till First grade to put her back in. I talked with the child life specialist in depth about it and felt much better about it. I know it's where Jaylie is supposed to be and it's the normal thing to go to school. She said it will help her feel more normal. She said it really is so good for these kids to get back into school. She said they usually do great. She will come to the class and do a presentation for the kids about Jaylie and cancer and help them to understand and be a friend to her. It sounds like the presentations are really great. Hopefully I won't be too much of a wreck when she goes back. I feel like such an overprotective mom now and I was totally not one before all this. I wish I could just protect her from everything but I can't and I know that wouldn't be good for her. It's like the worry and anxiety of having your kid go to their first day of Kindergarten at the beginning of the year times one hundred. Hopefully I wont be so worried about it as it gets closer to her going back. I know she will be fine, she loves kids and having friends and she loved preschool. It will be sad to not have her home bound teacher Trudy come anymore though. She is so great.

Jaylie is looking forward to having all this over and so are we. She is excited not to have to take as many meds soon and is excited to have her hair grow back. When her counts go up again she won't have to take the medicine that she has to swish in her mouth for 20 seconds every morning and night. She hates it and we will all be glad that will be over. She is excited also for her hair to grow back. She has been getting jealous lately of Breklyns hair and watches me when I fix it and has been saying a lot that she is so excited to have hair again. All
through treatment she never mentioned wanting hair, she even said that was her favorite part of having cancer is not having hair and not having to get it fixed. Now that the end is in sight she is changing her mind. She has a powerful mind and can talk
herself into anything. I think that's one of the reasons she has done so well emotionally with all this. We are hoping her hair will grow back well. The radiation she received can cause it to be bald in some spots or thinner in spots but we are hoping that hers will grow fine and she won't have bald spots. I know all of these things are so minor but they are a concern still. The main thing we want is for her to stay cancer free. Her next MRI is coming up soon and I am already nervous. Good thing for prayer, hope and faith. Without that I would have been so lost through all of this. We have seen so many blessings in our lives over the last 8 months, it truly is remarkable. There is a God and He loves us!!
Thank you for the prayers, they mean more to us than you will ever know!


Getting her blood pressure and temp taken.

In the elevator on our way home. She always gets cold at the clinic and today she wanted my scarf to keep her warm and her slippers on instead of her flats. Cute girl!

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Monday, January 9, 2012

Jaylie Completed Chemo!!

I really cannot believe that the 6th round of chemo is really over. We thought this day would never come and here it is and it seems unreal. We are sooo excited that she never has to have those horrible chemos again! The last couple days have been good, I can tell Jaylie is excited and we are so proud of her. She has been such a trooper through all of this and is the bravest 5 year old I know. She is my hero!  She had an audiogram on Thursday before her chemo started. Her hearing was great in the normal ranges. She has some hearing loss in her right ear in the high pitch ranges. The audiologist said we don't really use the high pitch sounds in everyday life, she never even tests them normally, only in chemo kids. So I am not too worried about it. The loss wasn't enough to lessen her does of cisplatin, which is the chemo that causes the hearing loss. Jaylie still got the normal dose, Hopefully this round she just did won't worsen her hearing too much. She will have another hearing test in a month. She did so well this weekend getting her last chemo treatments. She felt pretty good, probably better than any of the other rounds, which was super surprising to me. She was quite tired all weekend and still is. We got home Sunday from the hospital and then went to the clinic today to get her nulasta shot (which gives the white blood cells a boost) and they checked her magnesium levels. They were low in the hospital and she has to take magnesium tablets until it gets back up to a normal level. She has never had that before but they said the cisplatin (the chemo she got on Thursday) causes that sometimes. Her red blood cells and platelets were ok so she didn't need a transfusion today. We got back on Friday to get one last dose of vincristine and she will probably need one then. Jaylie was so happy when I told her that was the last time she had to get the nulasta shot, never again! She got so excited! I can't wait for one more month, until her counts go back up and we won't have to do any more blood transfusions or worrying about fevers and stuff. In one month from now, we will really be celebrating! We are now, but we still have a ways to go. Hopefully she will make it through this round without getting fever and infection and she will feel better soon. Once her counts go back up they will have a party for Jaylie for completing her treatments! It will probably be around her birthday too, she will be 6 on the 6th of February. Her next MRI will be around then also, hopefully I will have a date soon, but it should be the first week in Feb., so it should be an eventful one and hopefully a great one!  I know a lot of people are wondering what happens now. After her counts go back up she will have an appointment every month to check her port and get it flushed. They are leaving her port in for 6 months after her treatment in case the cancer does come back, which we try not to think about, or talk about. Even though she has done really well, her prognosis is the same. Its a 60 % survival rate. The statistics show that if it comes back it is more likely to happen in the first year. The second year is also kind of scary. She will get MRI's every 3 months in those two years and then every 6 months I think until she is 5 years out. Once you make it to 2 years, that is pretty good. The 5 year mark is the one that is the most sought after, that will be a great day when we make it to 5 years out.  Please keep praying for Jaylie and praying that her cancer never comes back, and that she will have the least late effects from the radiation as possible. We love your prayers and we feel them. We thank you so much!!

Friday, January 6, 2012

Last Round! Yay!

Jaylie is doing well. Her counts were all good enough to be admitted for her last chemo round this weekend. I can't believe I am actually saying its her last round, its crazy but great. She has done really well so far and is feeling good. She has been eating really well the last few days and ate great on Thursday. She got cisplatin that night and woke up feeling a little sick but she got extra nausea medicine and she was a champ the rest of the day. She had an awesome breakfast and pretty good lunch which is really unusual to eat that much after getting the chemo. She felt good, was happy, and had pretty good energy all day. It was the best she has felt on a Friday during her chemos since probably after the first round. It was great. My Mom brought up Breklyn and Crew today for a while and they had fun playing and seeing us. They love the playroom, so we stayed in there for a while. It's hard having all the kids up at the hospital at once though. I hadn't seen them since early yesterday morning so they both wanted me to hold them and wanted my attention. It was also nap time so they were both tired and fussy, but I am so glad I got to spend time with them. It is still hard being away from them. My parents are so great with the kids and we are so blessed to have them so close and that they are so willing to help out. Anyways, it is awesome to think that Jaylie is all done with getting cisplatin, only has one more dose of cyclophosphomide tomorrow and then only one more dose of vincristine next week.  I am so glad! Hopefully her body will recover fast and she won't get fever or infection when her counts get to zero. So happy for the last round!!

Tuesday, January 3, 2012

It's been 8 months

It has been 8 months today that we found out that the tumor in my little girls brain was a very aggressive from of cancer. The worst day of my life besides the day we found out she had a tumor. I still haven't written about those first few weeks finding out about the tumor and the diagnosis, one of these days I will. It's still emotional and hard to think about it. I really can't believe its January and it has been 8 months! I still feel like I am living in a dream and that my daughter having cancer isn't real.  Its weird to explain but both Kip and I feel that way. We have gone through the motions of life but we still feel like it is still May 2011, when she was diagnosed, that it's all a dream and we will wake up and it will be May and everything will be fine. If only that dream would come true! Its been a long road but has gone fast at the same time. Jaylie has done so well so far and only has one more round to go! I am beyond excited! And she is too, she has been telling me lately that she is excited for her hair to grow back. She knows the end of chemo is near! We just hope that her hair will grow back everywhere especially in her tumor bed area where she had the radiation boost. Sometimes it grows back in that area and sometimes it doesn't or its very thin.  I would feel bad for her if it didn't grow back well and she had to deal with that  her whole life too, but good thing for hats and headbands. We are going in on Thursday to check and see if her blood work is good enough for her last chemo round this weekend, but we might have to wait till next week. Everything was good enough last time we checked it except her platelets, they were only 40 and they need to be 100.  We are hoping her body makes a lot so we can go in this weekend and get the chemo over with. If not, no biggie, we will go in next week for the chemo. She has been eating really well the last few days which is great, because she hasn't been eating much lately unless its bread. At least she eats whole wheat bread  :) We have been going though lots of it. Jaylie is doing well though and has been feeling really good except for being tired and getting tired more easily. Her teacher came today, she is so wonderful! Jaylie absolutely loves her! We havn't seen her in a while, so it was fun and Jaylie was so excited. After though she told me that she could tell she is more tired and its taking her brain longer to process information.  I'm sure after this last round she will bounce back well and get all her energy back. She is such a trooper and is my little hero. I love being her Mom.

I haven't updated about my nephew Briggs in a while. He is doing well. They were able to take him home about a month or so ago which is so nice for them. They went home with his feeding tube in but were able to take it out a couple weeks later because he was gaining weight and drinking more from a bottle. We hope he will keep gaining weight. The doctors are thinking he will probably still need more surgery to fix the vsd (hole) and the coartation again but at the last appointment they said there is a small chance his body will fix itself and he won't need surgery. We are hoping and praying for a miracle that he will be all healed and he won't have to go through more surgery. If they did do surgery it probably won't be for a few more months, so he can get bigger and stronger. He is such a cute happy little guy.

I found out a couple days ago that my friend from San Antonio is about to have a baby and they just found out he has a coart from an ultrasound. Its so sad, what is weird though is that this friends nephew has a brain tumor and was diagnosed within months of Jaylie. Both of our families in such similar situations. Life is hard. I hate that others have to suffer what I have because I know how hard it is.

Anyways, things are good around here and we are excited to get this last round of chemo over with!!