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Monday, May 23, 2011

Radiation is DONE!!!!!!!!!!!!!




So today Kylie got to ring the gong! Signifying the end of her radiation treatments. Let me tell you what a GREAT feeling it was to see her wack that thing. It was a very emotional min for me and Mike. We both had tears coming down, even the women who runs the machine had tears in her eyes when she was hugging us all goodbye. The ladies who ran machine C (c for cute LOL ) where so nice they made her a little certificate, and got her a monkey stuffed animal and a good luck coin, and a HUGE balloon that when you tap it it plays don't worry be happy.






I am so happy that this month is over. It has def. been a trying month for all of us. It has caught up to her physically. She has been much more tired then ever before, sometimes it was hard for her to eat certain foods, and this cold she has had for what like seems like forever now, is kicking her butt. I am really hoping that in a couple of weeks she will regain some energy.



Savanna has started some new meds for her Lyme disease. I think they are def. making her have some symptoms again. The poor kid woke up in the middle of the night last night with really bad leg pain. They said this might happen and that's actually a good thing because it means the new meds are working. It kills me when my kids are hurting. But she seems better today. She is such a little trooper to take her meds all the time. She even can swallow pills crazy at 4 there was no way i would swallow anything.



Ya know i ask myself everyday why do we have to have 2 kids that are sick! It truly doesn't seem fair. But I have come to the conclusion that maybe its because someone up there knows we love our kids enough to make sure we do everything we can to make them better!! NO MATTER what.



Things have been stressful here for me very emotional and feeling like I'm pulled in 10 dif directions. Not sure if its pregnancy or just everything that is going on, but I feel like things are going to get better. radiation is over, summer is coming, savanna's b-day is coming, the baby will be born soon, camping season is upon us, warm sunny days. Yes things are looking up!!! Hopefully they will stay up.




Thank god for all my family and great friends. I don't know what i would do without all of you. Mike has made a webpage its http://www.courageforkylie.com/ check it out. My hubby is just so good at making webpages he rocks :) It has info on the fundraisers that are going on for Kylie ( there are so many wonderful people are helping to plan such great events to support Kylie)



Friday, May 13, 2011

Only one more week to go!!!



Three weeks of radiation down!!! Only 1 more week to go, thank god its almost over!!!!



Kylie has been amazing through all of this. So glad that this part of our journey will be over soon. really hoping that once this is over she will regain some energy.


They have been doing a fundraiser at Kylies school for St. Judes children's hospital. There was a flyer sent home saying that if the school raised $2000 the principle Mr H would shave his head. Well today the total raised was $4000 so he actually shaved his head :) I think that's awesome. Not sure if he really thought they would raise that much but he did it. I have to say her school has been great through all of this.



It truly amazes me how generous people are. The kids in Kylies class are all wearing hats and bandannas to show there support. One of Kylies friends moms is throwing an amazing fundraiser for Kylie this summer. I still can't believe that she wants to do that to help our family I am utterly speechless about this!! It will be unbelievable. I truly don't know how I will ever repay everyone who has helped us out!!!!


Savanna is hanging in there, she has been a little more moody then normal not sure if she feels left out or what but i notice she is a little extra clingy :( Poor kid.


Its so hard to balance everything! Trying to be strong for Kylie and making sure everything is good for her and she is healthy. Trying to make sure Savanna is still getting lots of attention from everyone too!!!! And also trying to get ready for this baby.


I have had people say that they can't believe how I've held it together and they are worried about me falling apart. trust me i wish I could but I have way to much on my plate to drop the ball now! I need to be everything to everybody. Now don't' get me wrong I am not complaining that's what it is to be a mom and a wife you HAVE to be there there is no choice. I don't need a pat on the back or acknowledgement I just need to get through this!!!! But man let me tell you I will need one hell of a vacation when this is all over :)


I am getting excited for camping season! Hoping we get to go away for memorial day for our first trip of the year. i love camping it is so relaxing and so nice to get away from it all and just enjoy nature and sit by a fire at night. Can't wait we need to do some normal things and enjoy just being together. All of this really makes you see what is important in life!!






Tuesday, May 10, 2011

scatter brain!

Today is one of those days. you know the kind I mean the ones where everything gets on your nerves.

One of those days where you have a million things running through your head and you feel like there aren't enough hours in the day!!!!!!

It wasn't a bad day even, Kylie had chemo and radiation today that went ok. She hasn't felt too good the past week. She caught a cold and its been kicking her ass. She got a good nights sleep last night unlike the night before where she was up all night coughing. So of course i was up all night too. When your kid isn't feeling well you are up worrying and checking and rechecking on them. She def. had a lot more energy today and didn't look to tired or worn out. I have to say it is really hard to see her look so tired :( It breaks my heart.

After treatments we went to a wig store. We have ordered her a human hair wig. it should look close to her real hair. I think Kylie is excited but more relieved that she will have one to wear. She was funny in the store trying on all dif wigs. She thought the long blond one was really funny!! And let me tell you I DO NOT look good as a blond LOL. I'm just glad that she could have a good time with it.

I feel like there is so much to do and not enough time to do it. I need to do more laundry! It is the never ending chore! No matter how much you do it there is always more!! I am trying real hard to keep up with the house cleaning, but once we get home for the day I am tired! I mean you wouldn't walk in my house and be like ewww gross her house is nasty but I really wish I could organize more!

Maybe its early nesting but I also feel like there are so many things I need to do to get ready for this baby. We have nothing besides a swing, a crib with no mattress and a bunch of clothes. I need to get my butt in gear I know i have about 13 weeks till he comes but I don't want to wait to long.

Kylie only has 8 more radiation treatments left YAY!!!!!!!!!!! I am hoping after that she will regain some energy and i won't be so worried about her all the time and i can get more stuff done.
Uggg its exhausting worrying about Kylie and the baby and still trying to be as normal as possible for Savanna!

See I told you too many things going on in my brain i am jumping from one thing to another. Oh well that's me lately total pregnancy brain LOL.

Thursday, May 5, 2011

radiation just about half done :)










Well tomorrow after her radiation treatment she will be half way done! We all can't wait to be done with this part. Not only does it break my heart everyday when I see her on that table, but its exhausting driving back and forth to the hospital. We get to valet the car right outside the door so that's nice when everything is running in time we are in and out and back in our car in 35 min. But its still a lot as you can imagine.



Kylie has been going to school during radiation as much as possible. Its starting to take a tole on her. She is just tired yesterday the school called and told me that Kylie was in the nurses office that she was really sleepy. So I went and picked her up it seems to me that by 1pm she needs to rest, so that's the plan I will pick her up everyday at 1pm so that she can come home and rest for a while before her treatment. Mike has been able to go back to work this week after taking the first week of treatments off, but he has managed to still come to most of the apt. with us. Kylie def. likes having all of us with her.



Last week when we were at Dr. Joes (where we go to get her chemo) they gave us a monkey!!



A monkey what am i talking about? I asked the same question to the nurse when she mentioned it to me. It is a stuffed money ( a big stuffed monkey) He is part of a program called " A monkey in my chair" this monkey goes to school and sits in her chair when she isn't there. The monkey which she named Coco puff goes with her class to PE, art, music, everything. He has his very own bag that the kids can make pictures, or cards to send home to Kylie. I think this is an AWSOME program the kids love it!!! He also came with a story book that explains to the class why the money is in her chair. Really cute book. There is also a little monkey that stays with Kylie that she named Coco pebbles. Things like this help make what is happening not as scary! I think its fantastic!!!!


So that's that! Kylie is still being a trooper and we are just trying to keep up with her!


Savanna is doing good, going to school and playing with her friends. She is really cute!! Funny little story


Mike had said to Kylie that if he had to cut his arm off for her he would. So I guess Kylie was asking savanna if she would give her arm to her. Which of course Savanna said No way!! LOL. Savanna then came out of the room telling Mike "daddy Kylie keeps asking me to give her my arm I don't want to" LOL I laughed so hard when I heard this story!! Poor kid doesn't get that she doesn't really want her arm! They are def. still asking normal they fight ALL the time!! I can only imagine when there is a boy in the mix!



My belly is getting big i am def. feeling more tired trying to keep up with everything, driving to apt, cleaning, laundry all that fun stuff. I have to say we have some fabulous friends!! All month that Kylie is receiving radiation people have volunteered to bring us dinner! It is wonderful to not have to cook after a long day. So thank you guys I don't how I can ever repay you!.


Another thing friends are now doing is selling gold ( ribbon color for childhood cancer) bracelets that say "courage for Kylie" this is a fundraiser to help pay the crazy medical bills. There has been such an unbelievable amount of people who have shown an interest in buying them! Its amazing how big peoples hearts are!!


Check out this link to see more!! http://www.simonds.me/courage.pdf Well I'm off to try to clean some of the house before we leave to get Savanna then off to treatment then off to the circus tonight YAY :)


Just want to say HAPPY MOTHERS DAY to all you wonderful mommies out there. Enjoy your day this Sunday. I know I will cherish my day with my girls :)









Wednesday, April 27, 2011

Raidiation begins













Hey everyone i know its been a little bit since I posted last, We have just been busy.


Well first let me say that everyone is doing good!




The Easter Bunny came to our house and left the kids goodies, and lots of eggs to find. We spent the day at my moms house with family. it was a nice quiet day. And my god the weather was gorgeous. Makes me super excited for summer! The kids got spoiled by our family with lots of Easter baskets. Savanna got the swim to me puppy (with the purple goggles of course) that she has been wanting forever! She was so happy! Kylie got an American Girl doll that looks like her. She was ecstatic! The doll goes to the drs with us everyday for her treatments. She loves it!! We have also promised that once all her radiation is done we are going to take her to the American Girl store in NY and get some things for her new doll. Shes SUPER excited. Its nice to see her excited for something.


Kylie started her radiation treatments 3 days ago. She was really scared to go the first day. I don't' blame her it is all scary! But once again she amazed us with her strength. when the first one was over she said that was easy. Poor kid I hated seeing her on that table with the mouthpiece and mask on, it was scary for me just to see my baby that way. But she has done an amazing job and we are really proud of her! I hope that this month flies by so one more huge hurdle will be over.




Savanna has been really strong through all of this. She really has no idea what is going on but she is always telling her sister good job Kylie, or you have to take your medicine so you will be all better! She loves her SO much!! I am so proud of both my girls.



The pregnancy is going well! I am getting BIG I feel like I went from not showing to being HUGE! But i guess that's to be expected I am 25 1/2 weeks preggers. This baby boy loves to move and kick and especially to sit on my bladder LOL.



One other thing going on is that we are going to be giving our dog Luna away to a new family. It REALLY breaks my heart. I love her so much but its not fair to her, we are gone all the time because of drs and stuff, and she is being crated more then we would like. By the time we get home we are just too tired to give her the attention she deserves! Plus with a new baby coming threes really no way to let her be near the baby. She is not a mean dog, shes actually the opposite shes super lovable but just doesn't know her strength. I would never be able to leave her alone near the baby fro fear of her hurting him accidentally. But the girls and i are sad to see her go. Savanna is taking it hard, but I think she will be ok after a little while. She is going to a good home with another dog and a giant yard to play in! I know she will be happy! But I am going to miss her :(




Well I'm done for now keep praying that everything continues to go well!!

Monday, April 11, 2011

More Dr. apts.



Sorry its been over a week since I last updated, we have been busy and I have just been super tired. i don't want to do anything when I am home.


So we went to the radiologist that was not a fun appointment for Kylie. They had to make her mask that she will wear for her radiation treatments.

Its made from this flexible plastic that has tons of holes in it. it covers her whole head and attaches to the table so it keeps her head in perfect position for treatment. They tell me that's this is the most important part!! But she did NOT like it!!!!!!! It kills me every time I have to make her have some kind of test or scan or anything. I wish I could just do it for her.


They decided that she will have a mouthpiece in while they are doing her radiation so it targets the exact spot and doesn't have to go through her jaw or teeth as much.

But in order to do this we have to go to a special dentist to make the mouthpiece for her. So we have been back and forth twice already, we go back to the dentist today to make some adjustments then back to the radiation Dr. tomorrow to see if it will work. Poor kid is constantly at the Drs. and we are constantly driving in the car. But it has to be done so no use complaining right?


They are hoping to start radiation fairly soon in the next couple of weeks. I just want to start so then we can finish one huge part!


Kylie's hair has started to fall out :( This has been one of the hardest things for me so far. I know that its just hair and it will grow back, but it IS a big deal. Shes a girl who loves her long hair. It breaks my heart every morning when she wakes up and there is hair stuck to her clothes and pillow. and brushing it is torture. I knew this was a side effect but it is still hard to handle. She has been unbelievably strong so far about this. We are having a wig made for her. She even wants a pink wig and a blue sparkly one. LOL.

We found these really cute headbands that cover her head like a bandanna yesterday. She loves them so I see lots more of them in the future.


Well enough for now I'll post more later.




Thursday, March 24, 2011

And the baby is............



Today I went for my week ultrasound for the baby!




They sent me to get 3d ultrasound because of everything that is going on. They wanted to make sure baby was ok.


So we went to the office the girls, me, Mike, and a close friend Kassie came with. The images were amazing. They checked EVERYTHING all 4 chambers of the heart, measured everything kidneys, bladder, stomach, leg bone, arm bone, spine, head, hands. It was crazy! It took about an hour for them to check everything. They said the baby looks great!!! What a sigh of relief some good news.




Then they asked if we wanted to know what the sex was. We decided we did. We did not find out with first two, but the third time around i figured it would be easier to know. So anyways




ITS A BOY!!!!!!!!!!!!!!!




We are really excited!! Now our family will be totally complete 2 beautiful girls and a little boy!! Needless to say Mike is ecstatic! who doesn't want girls and a boy.




Can't wait to start shopping for blue :)




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