Beautiful Song

A couple people have sent me this song so I thought I would share it. It really is a neat song that kind of applies to my life right now. I know there is a reason for everything and there is a reason Jaylie got this horrible brain cancer. It sure has changed my life.  I try to enjoy life more and my kids more. I have learned to try and cherish every minute because you never know when it will change. Jaylie is my hero and I admire her so much, even though she is only 5. She has taught me so much and I feel so blessed to be her mom. Anyways, hopefully you will have time listen to this song. People go through hard times and one thing this whole experience has taught me is to have compassion on others and not judge because you don't know what their life is like or what trials they are going through. I hate that anyone has to suffer, but that is what life is all about. I am just grateful for my Savior, who was born, was the perfect example, and who suffered for me and everyone in the world. It brings me comfort knowing he knows how I feel. He has suffered it all. I hope that at the end of all this with Jaylie that I can say that it was a beautiful heartbreak. It's hard because my little girl is suffering and its horrible not to be able to take it away from her.  I do know though, that I will forever be grateful for all I have learned and for the person I have become, because it has made me a changed person that is for sure. Anyways, here are the lyrics, but the video is beautiful if you can watch it.



I had it all mapped out in front of me, Knew just where I wanted to go;
But life decided to change my plans, And I found a mountain in the middle of my road.
I knew there was no way over it, So I searched for a way around;
Brokenhearted I started climbin', And at the top I found...
Every fear, every doubt, All the pain I went through;
Was the price that I paid to see this view; And now that I'm here I would never trade...
The grace that I feel, And the faith that I find;
Through the bitter-sweet tears, And the sleepless nights;
I used to pray he'd take it all away, But instead it became a beautiful heartbreak
I never dreamed my heart would make it, I thought about turning around;
But heaven has shown me miracles, I never would have seen from the ground.
Now I take the rain with the sunshine, Cause there's one thing that I know;
He picks up the pieces, Along each broken road.
Every fear, every doubt, All the pain I went through;
Was the price that I paid to see this view; And now that I'm here I would never trade...
The grace that I feel, And the faith that I find;
Through the bitter-sweet tears, And the sleepless nights.
I used to pray he'd take it all away, But instead it became a beautiful heartbreak.
I would never trade... The grace that I feel, And the faith that I find;
Through the bitter-sweet tears, And the sleepless nights.
I used to pray he'd take it all away, But instead it became a beautiful heartbreak.

Update

First of all I've got to say that I love my family! I have the best husband and the best kids in the world! They are so loving and sweet to Kip and I. We watched Polar Express last night with the girls in our pj's and drank some hot chocolate. It was fun, they loved it. Breklyn leaned over during the movie and gave me a hug and said "Mom I love you!" So sweet:) I'm so blessed to have the family I do. I love them all so much!

Jaylie is doing well. We came home from the hospital on Sunday. Jaylie was so excited to come home. She did the best she had ever done when the nurse was deaccessing her port. She hates the sticky tape they put on it and usually cries and freaks out, even with adhesive remover and foam that helps take it off. She was so brave this time though and didn't cry or freak out.  We were so proud of her. We all missed Breklyn and Crew so much, especially me, I hate being away from them. They both got sick and were throwing up early Sunday morning, so my parents kept them at their house a little longer so we wouldn't bring the germs in around Jaylie. I was so glad when they came back home though. Luckily they didn't get too sick and it was over fast. It felt so good to be home with the whole family. It's only 4 days we stay in the hospital but it feels so long, especially having to be away from the kids.

Jaylie had an appointment yesterday and needed platelets. Her red blood cells were ok because she got them in the hospital, but she had a platelets transfusion. She enjoys staying because of all the crafts. This girl is definitely a crafty girl! It's her favorite thing, she loves it! She made a gingerbread house, (the UT swim team came to the cancer clinic and brought stuff for gingerbread houses), she also made a sand art fish for Crew and painted a brown paper bag for it to go in. I love how she is always thinking of others, she loves to surprise her brother and sister and get them stuff, it's so sweet. She is such a sweet special little girl. I just look at her and am filled with so much love for her. She is amazing and has been so great through all of this. Only one more round of chemo to go! I really can't believe it. We are praying hard that she won't get fever this time around so we can just keep her at home for Christmas. She started sneezing yesterday and sniffling last night and today, but hopefully it's allergies or something. Her counts are on their way down and will be really low all next week. We go back in on Tuesday for labs and I'm guessing she will need blood (red blood cells) and platelets, but we will see. Hopefully we can get her all the transfusions she needs before Christmas! When we were at the clinic yesterday there was a gift waiting for Jaylie. A little boy named Noah was in the hospital with us this past weekend and we met them for the first time. He is 11 and darling. Jaylie and I loved his bright green Nike sports shirt and hat and commented on it. So they gave Jaylie a bright pink hat just like his! Sooo nice! I am constantly amazed at the goodness of people. Hopefully we will see them again soon. When we got home from the appointment there was a gift waiting for Jaylie here at the house. Kendyll, my awesome friend who sits the kids for me a lot, was here to get it. It was a darling home made pink beanie that was so soft, it was from one of Jaylie's preschool friends. So nice again! Thank you! Jaylie loves getting gifts and it really means a lot to her especially coming from other kids because she is not able to be around other kids or her friends hardly ever. She also loves getting peoples Christmas cards. L

Jaylie went in for her physical therapy appointment today to assess how she is doing.  Her left shoulder and arm are fine and she can move it fine.  It is just when she is accessed that she babies it so much, but when its out she moves it and holds it fine. She didn't notice any scoliosis and said it might have just looked and felt that way because of the way Jaylie was holding her arm and shoulder in the hospital bc she held it totally crooked. I think they will still have someone check it out though. The PT did say that she has some weakness (which is obvious and totally normal with chemo) so she just gave me some exercises and stretches to do with her. So that is good news :) Poor girl has felt sick the last two mornings and has thrown up. She handles it so well though. Breklyn and Crew were both there this morning watching. Breklyn was so sweet and was saying to Jaylie that she was so sorry she was sick and she hopes she feels better. It was really cute.   She threw up a lot today and it was kind of loud so Crew was just staring wondering what was going on.  Jaylie is tough and doesn't like to tell us when she is not feeling well, you never hear her complain about how she feels unless you ask her and are trying to get her to tell you.  She told me after she threw up that she felt sick all morning but just didn't tell me. I constantly talk to her about talking to me and telling me how she feels and that I want to know right away if she has a headache, earache, stomach ache, if her mouth hurts or legs hurt, etc. But still she just doesn't tell us much, she pushes through pain, or maybe just tries to ignore it. She has always been super tough though. She probably gets sick of me always asking her how she is feeling.

Anyways, we are sooo excited for Christmas around here! Probably more so this year than any other year.  Jaylie's situation makes it special and not knowing what the future holds for her makes us want to make it the best Christmas ever for all of us. And I think it will be. We have so much gratitude this year for the Savior and are so excited to celebrate his birth. The girls are at such a fun age and understand the true meaning of Christmas and love to talk about it. Of course they are excited about Santa too. We have an elf on the shelf that they love. They named him Elfie :) We love him at our house, it always helps to get them acting good if they are not. We aren't doing Christmas cards this year, I figured it would be too much this year with everything going on and I am glad now that I decided that a while ago. The time has gone surprisingly fast and I can't believe there is only a little over a week until Christmas!



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Harley Davidson Toy Run

Today the local Harley chapter did a toy drive for the kids here at Dell Children's. It was awesome! Santa was here, there was ornament making, cookie decorating, pictures on Harley's and with Santa and toys for the kids to choose from. So of course Jaylie loved it! Everyone was so nice and they were dressed up in their Harley gear. Jaylie got some presents for her and one for Breklyn and Crew. I love that she always thinks of them, she is the best big sister! Toward the end one of the Harley ladies there saw that their was a bike, which we didn't even notice, and saw it was about Jaylie's size so she brought it over to her and gave it to her! Jaylie was asking for a bike for Christmas too so it was perfect! I am blown away by the generosity of people. We are so thankful. Of course Kip and I got emotional too, we always do, I hate it. You'd think by now I would be able to control my emotions but when it comes to others doing nice things to make my daughter happy and to make this as much of a positive experience as it can be for her, it just is really touching and is hard not to get emotional. We are so thankful to all the members of the Harley Davidson of Austin chapter who came! I took lots of pictures but they are on the camera so when we get home I will post them.

Jaylie is doing pretty good today and is feeling well so far. Yesterday was not as good. I can't complain though because she hasn't even thrown up this round and some kids do and get so sick. We are thankful for how well Jaylie does. Thursday night was good but felt a little sick Friday morning. She had both emend and zofran in her so we also gave her phenergan. The emend works wonders for her, she never throws up when she has that. The phenergan knocked her out last time she had it so I figured she would sleep for a while and then feel better but she didn't. She was tired but super grouchy. She didn't want anyone to talk to her or sit on her bed or anything. She kept throwing little fits too, so we just left her alone. When she doesn't feel well she is not very nice to us (my mom was here with me yesterday). Turns out her hemoglobin was low so she needed a blood transfusion. The nurses said that explains why she was acting like that, she just didn't feel good. She was much better later that night after the phenergan wore off and she got blood. I think it was combo of the two. Next time I will try a different nausea medicine instead of phenergan. A friend who is in my moms ward at church came up to the hospital and brought Jaylie a little Puss n Boots doll yesterday, she loved it. Kip took her to see that movie so she was pretty excited. He went and picked us up some Pei Wei too, it was yummy. A huge thank you to him. It's always nice having visitors and food from outside the hospital :)

Jaylie has been good and happy today. Some of our good friends from San Antonio came up today and visited. It was so good seeing them. They brought Jaylie some cute gifts which she loved! They have a little boy Crew's age and he is a doll. Thank you for coming guys!

We are scheduled to go home on the morning. I miss Breklyn and Crew soo much! I am so glad we get to be together again tomorrow. I am so thankful for friends and my family here that help out with the kids. It makes it so much easier on us. We are praying that Jaylie will stay healthy and fever free this round so we can stay at home for Christmas and not be in the hospital. Also praying that the chemo works, that her cancer won't ever come back and that she will have the least long term effects from all this treatment as possible. Thank you for your prayers and support. We are glad we are not alone in this journey.


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Round 5

It's been a great day! Jaylie had her hearing test this morning and there has been no hearing loss still! And her labs showed her counts and platelets were good enough to start chemo! So we are here in the hospital getting her couple hours of fluids with mannitol which is a bladder protectant to help protect her from the chemo. She gets it every time I just forget to mention it. She was so excited when we got the lab results and they were good because she wanted to stay a couple days in the hospital, she really likes it in here. So far today she has made 3 ornament crafts, done school work, read us some books, colored, and played her DS. She has paints and a scene it game in her room too to do. She stays busy:) Physical therapy came today and I usually just say she is doing fine but thought it would be good for them to evaluate her. Most brain tumor kids do pt through treatment and afterwards and Jaylie hasn't really had to. I haven't really noticed a difference in Jaylie physically but wanted her evaluated because I am with her all time so I probably wouldn't notice slight things. She is still really strong which is no surprise because she was always the strongest little girl we knew. She really favors her left arm and shoulder because that is where her port is and she is always very protective of that area. When it is accessed and there is a tubie hanging out of it she is even more protective. I think its because of the sticky window they put on it so it stays in place, she says it hurts her there when she raises her arm up. I can totally understand that. When we are in the hospital or the cancer clinic and it's accessed she hunches over really bad and will hardly use her left arm. The pt noticed and had her move her arm and shoulder around and did some fun little exercises with her and said that left side is definitely more tight and curved forward a little. Her shoulders are not even with her head, the left one is lower. Im sure it's more exaggerated because she is accessed though. She said she also might have slight scoliosis, but she would send someone from ortho to check it out. Scoliosis is one of the many late effects radiation can cause, so I wasn't too surprised, I just hope it doesn't get too bad. Well be seeing the physical therapist tomorrow too and maybe be doing some outpatient.

Her audiogram this morning went very well. At this point in the chemo regimen it is normal and likely to have some hearing loss at the high frequencies. I was kind of expecting it and preparing myself mentally for that but once again her hearing is perfect. No change is the high pitches or the normal pitches which is really amazing. The tech said she doesn't know why some kids cochleas seem to be more resilient to the chemo but that Jaylies were. She said that she is amazed with her and that most if not all of her chemo patients hearing had been effected at this point. We are very grateful to say the least. It is a happy day! Thank you for all your prayers and faith in Jaylies behalf.

Here are a couple pics of her doing her physical therapy.











Thought I would throw this one in, this is how she was sleeping this morning:) She is under that blanket. She did not want to wake up, we had to get up early today!

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Jaylie Update

Jaylie had an appointment to get labs done this past Thursday. It had been a little over a week since our last appointment, so it was a nice break. Jaylies counts were low the whole week of Thanksgiving and then some the next week so we were bound to the house for a while. This past Thursday her ANC was good at around 3000, anything over 1500 is normal. Her hemoglobin was low for a normal person but fine enough to be able to start chemo but her platelets were only 60 and they have to be 100 before she can start chemo which is scheduled for this Thursday. So we are hoping and praying that in one week her body will have made lots of platelets. If they are less than 100 then we have to postpone the chemo for a week which we don't want to do because that will put Jaylies really low time around Christmas and New Years. If she is able to start this Thursday then her counts should be starting to come up right after Christmas so they would be ok the week after Christmas probably. In short, we are hoping and praying that her platelets will be good enough to start chemo. This will be her 5th round! After this one only one more to go!!

This Thursday she also has another audiogram. These next couple audiograms are really important because this is when you usually start seeing hearing loss. We have faith that she won't have any and all will be well.

We met with the neuro oncologist today. He did a neuro exam on Jaylie and looked at her head and scar. He said all is well and her last MRI looked good (her brain and how it looks now). They will do more intensive exams when chemo is over. He checked her reflexes right under her knee and hers didn't bounce up like it normally does. He said its pretty normal to not have good reflexes during chemo. It's crazy how it's affecting her body in ways we don't even realize. Anyways, we were glad for the good news, she is doing so well.

We are ready for Christmas around here! Shopping is done and our home is decorated! It was so fun to actually do a tree this year (the past 8 years we have been gone for a lot of December). The kids are loving it. We have been reading lots of Cheistmas books too. We read one the other day and it was the story of Jesus birth. The last page showed a picture of baby Jesus and it was a real photograph of a real baby. Jaylie was saying how cute he was in her baby voice and was going on and on (she loves babies these days) and then she turned to Crew who was sitting next to her and told him that he was cuter and hugged him. She said no one is as cute as her little Crew :) She is a sweetie.

Jaylie went and got her Jammie's on by herself tonight and told us not to look then had Kip and I close her eyes while she came in and showed us her "surprise". She had put on her jams that say I Love Mom and Dad :) then she came and gave us big hugs and told us she loves us. It was so sweet! She hadn't ever been a cuddler and you wouldn't gave described Jaylie as super sweet but she has gotten so much sweeter through all this. I would say she is one of the sweetest little girls ever. She is always so sweet to us as parents and to her little sister and brother. I'm so thankful for her and love her so much. I am amazed everyday with her and her attitude and how well she is doing.


Jaylie in her jammies when she surprised us.



Our Christmas tree. It is silver and red. I wanted to do blue and silver but Jaylie really wanted it to be a Christmas color and she said blue was not Christmasy:)


Jaylie chose her outfit :)

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Make A Wish

The Make A Wish organization is amazing!! They came to the house a couple months ago to talk with Jaylie about what she wanted her wish to be and to do paperwork. They were so nice and brought Jaylie a game and a barbie in a decorated hand colored gift bag. She loved it! I am so blown away with how awesome this organization is. They grant a wish to all children with a life threatening disease. Jaylie wants to go to Disney World! We tried to give her a bunch of ideas that she could do but she always wanted Disney World and wouldn't even consider anything else :) I am glad that is what she chose. I'm sure it will be amazing! I have heard from several people who have done it for their wish and they said its unbelievable. They put you up in a hotel that is only for Make A Wish kids that looks awesome! You get special treatment and get to go to the front of the lines in the parks. We are so excited to go! We get to meet with the people from the company who is sponsoring us soon too, so that will be neat. We are so thankful to them, I will blog more about them after we meet with them. Any company who sponsors Make A Wish kids is amazing! Jaylie talks about this trip all the time and it really gives her something to look forward to after treatments are all done. Make A Wish is yet another thing I am so very thankful for.

Continued Support

The Fitch family did a lemonade stand for Jaylie. We don't even directly know them. So sweet! I shed good tears everytime I hear of someone doing something like this for our little Jaylie. It means so much!

The Mehok family that lives in our neighborhood did a lemonade stand for Jaylie and brought the money by in this cute jar they decorated. We have never met them either.

My great friend Heather did a booth at our neighborhood fall festival to raise awareness and got donations.

Someone donated money to Jaylie's fund and wrote this. Here's a little something to help with the expenses of treatment. And here's a thought from Elder Maxwell: "The cavities carved in our soul by adversity often become the receptacles of joy." The Larsen family, who we have never met, sold cookies in their neighborhood for Jaylie and then sent her a package with the money and cute cards and stuff. There are so many more people and families who have done nice things for us over the last 7 months. We appreciate everything! I wish I were better about remembering to put things on the blog.

Happy Birthday Breklyn!!

Breklyn had a birthday on October 15th, I am so far behind on my blogging! I know everyone says how fast time goes but seriously I can't believe she is 3! She is such a sweet little princess. She is all girl and loves anything girlie. Lipstick, lipgloss, painting her nails, dress up, makeup, curling her hair, jewelry, and bows are her favorites. She is so much more girly than Jaylie and I thought Jaylie was pretty girlie :) She can be the sweetest thing ever and the sassiest thing ever and can switch between the two in a matter of seconds. I absolutely adore this little girl!

She wanted to shave her head when Jaylie did and was upset that we didn't let her

She wants to be just like her big sis

She loves crew and gives him lots of loves

She loves having dance parties

She loves playing with friends

She loves dress up
She loves shoes--hers, Jaylie's and mine

She loves Dora 

She loves watermelon and grapes

She loves bell peppers in all the colors and eats them like they're candy

She loves books and likes to pretend reading them to herself
She loves playing outside and getting dirty

She likes watching Tangled and other princess shows with Jaylie

She likes flowers and picks wild flowers any chance she gets

She loves playing mommy and baby. She plays it all the time with all the babysitters

Some funny things Breklyn has said recently:

I said to Breklyn, "I don't ever want u to grow up please don't grow up okay?" She said "sorry I'm going to grow up, I need to go to mutual".  Mutual is what we call the mid week youth group activity at my church. I work with the youth girls at my church and go to these activities every week so she always sees me go. It was so cute!

Breklyn was with Kip the other night and she said "You be the king and I will be the queen and we need to kiss". Kip kissed her and she said "no we have to do it longer with our eyes closed" and then they kissed for 30 sec.  I have no idea where she got that from!

She is into manners lately. Breklyn wacked Jaylie on accident and it hurt her so Breklyn said sorry and Jaylie just kept crying. Then Breklyn started crying and said "she needs to say it's ok"!

We made a pretend cake and Breklyn told me to make a wish and blow out the candles. She said "Wish for a mirror to look in".  I said "Why, you like to look in mirrors?" and she paused then said "Because your so cute".

She loves witches and is obsessed with them. She wants a witch story every night and she always wants it about a mean witch, a nice witch, a princess and a prince. She was a nice witch for Halloween too. 


She loves having babysitters. Breklyn and Jaylie actually told me the other day that they wanted me to go to the store or something and have a sitter come over. They tried to talk me into it like 5 times that day.

Pictures from her Strawberry Party. Our schedule is so crazy that time crept up on me and before I knew it we were a couple weeks away from Breklyn's birthday. I didn't have a lot of time to plan a party but I was able to pull it off.  3 of Breklyn's little girl friends came and 2 of Jaylie's came. They had fun and Breklyn loved every minute of it! We planned to have it at a park but it rained the day of her party so we had to do it in our house last minute. We had the car packed up with all the party stuff and everything and the second we got everything in the car it started pouring! Just our luck, but we really needed the rain so we didn't complain :)  We blew up a bounce house in the living room and let them play in there, did cupcakes, a game, and then presents. You will notice in the pictures below that Breklyns cheeks are all red. It was from playing so hard in the bounce house!  Thank you to everyone who came!

Pin the jewel on Strawberry Shortcake

 Opening Presents

The bounce house we had set up. One of our neighbors was moving and didn't want to move this so they gave it to us. It is huge! It hardly fit in the living room! They had fun on it though, I know I got more pictures of it but I can't find them.

The party favors

All the girls except one of Jaylie's friends.

Here are some more pictures of Breklyn that I love.

I love this picture of her.

Posing in the park in New Mexico.

She wants to be just like Jaylie. She draws ports on her chest all the time. She wants a port and wants cancer so she can go to appointments and be just like Jaylie.  All of her stuffed animals and babies have had cancer and brain surgery, its kind of cute but sad at the same time.

Any one who knows her knows she loves lipstick and lipgloss! She usually does an ok job, but this time she got it all over :)

Love these ones from the 5k. Someone gave her a ring pop and she loved it!