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Wednesday, December 21, 2011

Christmas is here already!!

Christmas is in 4 days!! OMG I still am not ready. I can't believe how fast the last two months have gone by. I feel like it was just Halloween.


Things are going along pretty smoothly. Kylie is almost done with chemo. Only 7 more treatments. I am so glad its almost over! Even though its done its not really done! There will be lots more scans, and checkups and MRI's every 3 months for 2 years. We also wonder about long term effects of all of this poison that has been pumped into my little girl. All we can do is move forward and be thankful that this part of our journey is almost over.


Savanna is doing well she is on her last 2 months of med. The poor kid has been on antibiotics for a year now. It is amazing what a little bite from a tick can do. This last med she is on could permanently stain her teeth. But the way i figure it is if that's the worst then we can always bleach her teeth when she get older. I truly hope this works and that it will be the end of Lyme disease.


Mikey is doing great. Hes the happiest boy! He is a good sleeper and LOVES to eat.
He has the best giggle. I feel so blessed to have him in my life. He makes our family complete.


So as we get ready for the holiday in a couple of days, I look forward to spending time with family, introducing Mikey to family, and I am excited to see the smiles on the kids faces Christmas morning. We are so thankful that we get to spend this holiday together. That's what its really all about.
Well enough for now. I hope everyone has a wonderful Christmas, take time to enjoy this time our kids will only be small for such a short time and these are the memories they will carry with them through out their life.

Merry Christmas!!!

Saturday, November 26, 2011

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Monday, November 14, 2011

Its been a long time!


Its been a really long time since I have written anything,
but come on my life is a little crazy give me a break!!

Life has been going good lately I had baby Mikey on July 31st. He is the cutest baby and he is SO smiley!!! My labor was fast and furious. I started having contractions on a friday in the afternoon but they were like 40 min a part at that point. then I went to the hospital at 3:30 am with them about 7 minutes apart. The nurse didn't really think I would be staying but to her surprise and mine I went from being 2 centimeters dilated to 10 in 3 hours he was born 6lbs 14oz and 19 1/2 inches long at 6:55am on July 31st.

He has just been such a joy since day one! He is a great sleeper. (Thank God ) He has only been getting me up to feed him at 4:30 am and then goes back to sleep till around 8am. He goes everywhere with me and is just so happy to go places and see people. He absolutely loves his big sisters! They love him just as much. They are still after almost 4 months fighting over who gets to hold him next.
Kylie is doing well. Still getting chemo once a week. She does ok she works herself up sometimes and gets nervous that she will get sick and when she does that, she will get sick. The mind really is an amazing thing. She gets an antibiotic once a month and it makes her sick every time!!!! Its really hard on those days. To see your little girl sick and you can't do anything to change it. But shes a trooper and is strong. Her hair is growing back like crazy. It looks so cute I tell her all the time she looks like a supermodel. LOL She is so happy.
Mike took Kylie for her routine MRI and chest x-ray today. She did great! Its a long day though. Its also hard on us waiting for the results. I know in my heart that everything will be fine but you still worry no matter what. So lots of prayers.
Savanna is doing super in school. I was really worried that she would have a hard time. A new baby in the house, school everyday, and Kylie still having treatments every tuesday. But she has done great she likes her teacher, and is making new friends. She can't wait to come home to see Mikey. She just finished up her first season of soccer. she is a good little player. She gets right in there and is aggressive. I love to watch her. Kylie also played this season again. She also did great. I am so glad she Can still continue to do the things she likes.
Savanna is excited to start Daisy Girl Scouts soon. Now I will have 2 girls scout troops, YES I'm crazy but how could tell Savanna no when she asked if I was going to be the troop leader for her like i was for Kylie. I couldn't. Also lots of PSA stuff going this year. Heading up some great fundraisers, the best is going to be a ladies choice dance. I have great memories of going to them with my dad when I was little. Excited to see my girls go with their daddy.
Mike has been really busy working on the house Kylie moved her basement down stairs, savanna is moving into Kylies old room and Mikey is going into savannas old room. Kylies room came out super cute! Savanna is looking really cute too. Hes such a hard working guy, I love him! Such a good daddy and husband I couldn't ask for anyone better!!!
Well we have a lot to be thankful for this Thanksgiving!! We get to spend the day with family tomorrow and be together! Then its off for some black friday shopping!!
Happy Thanksgiving!!!

Wednesday, September 21, 2011

Childhood Cancer Awareness!

I know its been a LONG time since I updated but things have been going really well and we have been really busy. I will update about every thing tomorrow. Tonight is for spreading awareness.



September is Childhood Cancer awareness month.






I know the month is almost over but we should think about it every month. Wear your gold and show support. There is such a great need to spread awareness. Watch this video to learn more!!!!!








Please continue to pray for my girl who is such a warrior, and all the other families fighting this disease!







Saturday, July 23, 2011

Chugging along!


So its been a long time since I've blogged.
Sorry people but I've been tired and hot and pregnant.

So only 2 weeks left till this little man is due to come into my life, I have to say everyone is really excited :) Especially Kylie she must say at least 5 times a day "I can't wait till baby Mikey comes" I just can't believe that its almost time. I finally feel ready though all his little clothes are cleaned, bassinet is ready, I have all the essential baby equipment ready to go. Now we wait! At my checkup a few days ago the dr. said he wasn't ready yet but maybe she would see me before my next appointment, HAHAHA little does she know my kids DO NOT like to come out till they are ready and I don't see this one being any different.

My 2 bffs threw me a small baby shower. I told them not too but they surprised me anyways. It was a really nice surprise, they did a great job. <3 you girls.


The girls are doing good. Kylie has been thankfully healthy!! So far she has had a great summer. Lots of swimming in the pool and hanging out with friends. The 4th of July was really fun we got to see lots of extended family and the Bristol 4th of July parade in RI. Fireworks, and tons of food. Just what summer should be! We have noticed that if Kylie plays real hard for a day then it will take about 2 days to recoup. But at least shes not missing out having fun.
Savanna just turned 5 YES 5 I CANNOT believe my baby is so big and will be starting Kindergarten. It really makes me a little sad:( But that's what happens they grow up. She had a horse themed b-day party of course I didn't expect anything dif. She just LOVES horses! I am looking into riding lessons for her come the fall. So it will be back to being busy and a taxi cab. Between riding lessons and soccer, and Girl Scouts, and a new baby. but I wouldn't have it any other way. i LOVE being a mom.


We had a scare the other night! A BIG one! Our dehumidifier caught on fire in the basement. Luckily Mike had gone down to sleep at 4am. The smoke detectors started going off around 4:30. I actually didn't hear them until savanna came into my room scared. I had the air conditioner running. I got up because I heard a beeping and opened my door and instantly smelled something nasty. I went to the top of the stairs and opened the door and a big cloud of smoke came up in my face. i yelled for Mike thinking he was still in the bedroom. he yelled that he was already down there and that he had put the fire out with the hose. Thank god! i was so scared I put the girls in my room with the cat because there was no smoke in there. The upstairs didn't get much smoke but we had to air it out with fans for awhile. It really freaked me out.
We are very lucky for a lot of things, 1. that Mike was down there and got to the fire fairly quickly. he said the flames were 6 feet high. 2. the humidifier was in an unfinished part of the basement ( or the whole toy room would have gone up and the upstairs probably would have had damage also.) 3. and most important that everyone was OK. Things could have turned out so much worse! Really Scary.


I have to say I'm not sure why we are being tested so much. We are grateful for everything that we have, we are not mean or unappreciative. We LOVE our kids and family. have we not proved ourselves enough? All I can say is we will face ANYTHING that we have to. We will keep going no matter what. And 5 years from now we will look back and say wow that was a hard year but look at us now we will be an even closer family :)

Thursday, June 9, 2011

Not to sure what my problem is lately but I have no energy. Not sure if its the heat, the pregnancy, or everything put together but I don't want to do anything!


Well that's not entirely true.... I want to get rid of everything!!! Clothes, pool, firepit we don't use, toys anything but I want to have less things!! I never had nesting like this with the girls. Well at least I don't think so.


Anyway I am trying to get ready for this baby we finally have somewhere for him to sleep I bought a new bassinet (thanks to mold ruining my old one) So now I only need to get a couple of more things.



This month is busy for us! We have something going on almost every single Sat and Sun. I think we will have to pick and choose though.

Kylie finished her radiation treatments like I had written before. Thank God for that. Her energy was coming back more every day. Well I think she pushed her self too much. One weekend she was going going going . She had a sleepover on Fri. then we took her to New york city to visit the American Girl Store. She had money to buy whatever she wanted for her American girl doll. This was her treat for doing such a GREAT job during the 4 weeks of hell (radiation) . She had a good time even though she was a little tired by the time we were leaving. So we went to the American girl store then off to Toys r us for Savanna. Who did not want an American girl doll. I kept asking her but no she wanted of all things Squinkies. She is too funny! The girls slept good that night :) On Sunday Kylie had a birthday party to go to. She looked really tired by the end of it.


Needless to say all that action had an affect on her Monday morning she woke up with a 103 temp. So off to the drs we went to get antibiotics through an IV. An the hell starts all over again. Just when you think things are better NOPE the poor kid takes a 3 steps back. So she took it easy all week. Luckily it rained all week. Wednesday and Thursday were like 100 degrees uggg that was terrible!!! So I kept her home from school. The heat def. has a huge effect on her. If she gets too hot her temp rises that's not good. Well Friday was much cooler so she went to school and made it all day.
It really makes me sad when I drive by a school and I see all the kids running around playing without a care in the world, and here's my kid in the backseat sick and tired and doesn't even have the energy to make it through a whole day of school. I ask myself everyday why we deserve to have this happen! Its so not fair!!!!!

Savanna has started taking new meds for her Lyme. Well they are giving her tummy aches! I need to call the dr today to see if they can give her something else. Poor kid!! Once again its not fair!! I hate that my kids aren't as healthy as they deserve to be!
On to a happier note savanna has lots of fun things planned fro the last week of school. Everyday they have something fun going on. Ice cream party, the maritime aquarium is visiting her school, and big end of the year party! I still CANNOT believe that my baby is going to Kindergarten in the fall. It has gone by so fast, she seems to little to go to school all day long. I am gonna miss her during the day.


But I will have a new baby boy to keep me busy! The girls are getting more excited all the time for the baby. They talk about holding him and feeding him, and buying him special things. Its so cute!

Ok this is totally off topic but i just noticed I use the exclamation point way too much. I guess every ting i say is so exciting LOL. My pregnant brain is nuts and jumps from topic to topic and forgets everything! Oh well enough for now. I will update again when i have more exciting things to say.

Keep us in your thoughts and prayers!! Scans and double chemo this week! <3 you all

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)



video

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 :)




Wednesday, March 23, 2011

First 2 weeks of treatment down!

So as of today Kylie has undergone 2 chemotherapy treatments. She has done extremely well!!!!! I am so glad that so far its been ok for her. Of course she was VERY nervous the first time we went. She was afraid of the unknown, and afraid it was going to hurt her.


They gave us some numbing cream to put on her Port 1/2 hour before she goes so that she doesn't feel anything. The first time we went last Tuesday. So when we went the nurse was fantastic!! She explained everything to her before she did anything. Once she accessed the port Kylie was amazed that she didn't feel anything ( thanks to the numbing cream!!) They then hooked up the chemo meds. They gave her 2 different meds this time but that will only happen every 3rd week. They also gave her some anti nausea meds so she wouldn't get sick. This took about an hour. She was ok with it she pushed her IV pole all around and couldn't get into the play room fast enough. She did some arts and crafts, ate some snacks, and checked everything out. After her treatment she got to pick out of the toy closet! I couldn't believe all the stuff in these closets. It was donated I think that's great! Every time she gets a treatment she gets to pick out a toy. She picked out a new webkinz. She was very happy.


When we got home she wanted to rest. So she hung out watching TV and playing on the computer. She complained that her belly hurt a little but not bad. They gave us a script of anti nausea meds that she can take every 4 hours as needed. I was so relieved she didn't get sick. I think she was expecting it. Wed. she woke up ready to go to school but once it was time to get her stuff together she said her belly hurt like a "pokey belly not a sick one" I think it was nerves because then she asked what would happen if she got sick in school, poor kid. So I tried to make it no big deal I said "If you get sick you call me and you come home" So she rested all day Wed. but was totally fine. Thursday morning she said "I think I just needed to rest one more day" Off to school she went with no problems!


We had an uneventful weekend Kylie went to play at a friends house, and Savanna hung out with me and was a great helper girl going through old baby girl clothes to give away! Sunday My sister Kim and her family came to hang out all day on Sunday. It was great to see them and Kim made a yummy lasagna for dinner (score for me I didn't have to cook!)


So its again Tuesday treatment day. We took Savanna with us today. She needed to see where Kylie was going. Poor kid only knows that she has to go to a Friends house and Kylie gets to be with mom and dad and she comes home with a prize. She doesn't understand that its not fun where Kylie is going. So she came with us. Today she only had one chemo medicine she was done in about 15 minutes! She couldn't wait to show Savanna the play room and help her pick out a toy from the toy closet too! Of course Savanna thought this was great to. She picked a horse webkinz OF COURSE what else would she pick but a horse! Kylie picked out a new baby doll with a blanket and an extra outfit. After we left there we went out to breakfast then to IKEA. The girls each got new toy storage for their rooms. Then off to the dentist for Savanna she did great :) Then I had a meeting with the school to talk about Kylie. It was a good meeting the school is being fantastic and will accommodate us any way we need. We are working on setting up a tutor for when she has radiation for a month.


So busy day but its over another week down only 38 to go! ON side note a friend set up a webpage for us, and people are volunteering to make meals and bring them to us on the days of treatment. I can't tell you how nice it was to come home after a long day and not have to worry about making dinner. I can't thank Dorothy and Michele enough for bringing us Yummy dinners last week and tonight!!!!!!!!!!! It means so much to us that you guys want to help so much! I am really glad that Kylie is doing so good and hope it continues!! Thursday we go to the radiation Dr to come up with a plan. Will update everyone again after then. Thanks for all the well wishes and support it mean the world to me and Mike :)

Sunday, March 20, 2011

The Diagnosis and treatment plan!

We got the results from the Dr. about the last 2 scans. They were clear also!!!!!!
That is great news. So she has Embryonal rhabdomyosarcoma stage II. The prognosis is excellent!! There is over a 92% chance that once its gone its gone!! Those are some really good odds! We are very blessed! He said that she has one of the most curable kinds you can have, and he is very optimistic that it will all turn out good! I know in my heart that she will be fine!! Its just going to be a long road to get there.

We went to talk to the Oncologist on Tuesday. They have decided that she will have 40 weeks of Chemotherapy!! (I can't believe how long she will have to endure this, but he said this is how they treat it) She will go for treatments once a week at the Dr's. office which is great! She won't have to go to the hospital for any treatments, I think this will be so good for her a lot less scary! The treatment room has all kinds of board games, crafts, TVs game systems, snacks. So she will go and hang out and have her treatments. I hope its that easy but I am not naive I know there are going to be some bad days , and some really bad days but we will do whatever we have to to make it as easy for her as possible.
She will have 2 kids of chemo drugs. One is vincristine (Oncovin, Vincasar) that she will get every week. and dactinomycin (Cosmegen, Lyovac Cosmegen) which she will get every 3 weeks. She will get her treatments through a port that she had put in a couple of days ago. That surgery went well she was a trooper once again. She is still sore but not to bad today. Everyday it hurts less.
She had the port put in so that she doesn't have to have an IV anymore they can give her meds through it, take blood, blood transfusions (if she ever needs one) and can get antibiotics (if ever needed). The port is little and you can't even see it, she doesn't even need to cover it to shower or swim or anything. I think this is the best thing for her in the long run. No more Sticks with needles!


She is also going to need 4 weeks of radiation. so that's going to be 20 times. 5 days a week for 4 week. Luckily the sessions will only last about 10 minutes. We still don't have an exact plan we won't know till next week.

But she has her first Chemo treatment in 2 days. She is of course scared! its the unknown. Everyone keeps telling me that kids are so resilient and strong. So far that is absolutely true. She has been so brave, I am so proud of her. I just wish she didn't have to do this at all.

Friday, March 18, 2011

Scans!

Last Monday we were scheduled for 2 scans to be done at the hospital. She had a PET scan and a MRI. They were doing these 2 tests to see if it spread to any other areas of the body.
When we first got there I was overwhelmed by how big the hospital is and how many buildings. Take this elevator up then walk over this bridge then take the other elevator down. Geeze if I didn't have directions I would have been completely lost!

She needed to get injected with some low dose radioactive material for both tests so they put an IV in so she would only have to be stuck once. And she was very excited to see her favorite nurse (already) from Dr. Joes office. She had seen Kylies name on the list and came over especially for her so she could put the IV in. This made her feel so much better seeing a familiar face, even if she had only just met her. SO they inject her then she has to sit still for 1 hour. then she had the PET scan. This machine looked like something out of a science fiction movie. She just had to lay on a bed still and the bed went into the machine a little at a time. She did great with this test.
SO then we had about an hour before her next injection so we went and got lunch. She got the second injection and went for the MRI. I couldn't go in the room with her because of being pregnant, so Mike went with her. She came back from that test crying :( She DID NOT like it at all, they couldn't even finish the whole test. She hated being closed in and that the machine made so much noise!! She was def. glad when that was over and we got to go home. I was glad this was over. No the waiting would begin! We were praying they wouldn't find anything!!
When we got home there was a message on the answering machine from the drs office. I was like wow the results already. NO it was them telling me the Dr had scheduled 2 more scans for Wed. OH great more tests!!!!!
Tuesday night we got the call from the Dr. with the results THANK GOD they were clear it didn't look like it went anywhere else! We were so relieved!!!! Some good news. He also said he thought the test on Wed. would be just as great. What a sigh of relief!!
Wed. was fairly easy, went in for an injection had a CT chest done, waited around for an hour or so and had the bone scan done. She was such a trooper. Its amazing how well she taking all of this. The Dr. said he would call us with the results the following day.
So off to home we went. To my surprise my fabulous friend Jen had made a turkey for dinner and was coming over to drop it off. I couldn't believe it. How nice of her to think to do that. I have all ready seen so much kindness from my friends, whether it be watching savanna, giving her rides to school, making us dinner or just listening to me cry or talk :)
I have a feeling that we will never be able to repay all our family and friends for helping us through this!!!!!

Wednesday, March 16, 2011

Scary how quickly your priorites change!!!

I figured I would start blogging again so I could let friends and family know whats going on with us and with Kylie.

I'll start where i left off last post. Friday

We go to see the Pediatric Oncologist. Not sure how we got so lucky to find the Dr.s that we have but they are the best at what they do!!! everyone I talk to tells me we are in the best place we could be and have the best Dr. Hearing that is def. comforting. So we go to the office I am a nervous wreak trying to fill out the forms and waiting. The Staff is really great, they understand where you are coming from and have lots of patience with you.
The first thing they do is check her weight, and blood pressure and height. We had nurse Laura who Kylie immediately liked. Then we go into a room and a social worker came to talk to us. She was really nice. Then the Dr. came in. We had Kylie and my mom go play in the "play room" while we talked.
So he tells us that it was a tumor that was removed and its called Rhabdomyosarcoma. But it was fairly small and they caught it early and that she will get better!! THANK GOD I couldn't have asked for better news!!! Just hearing that from the Dr. made me feel a little better. My baby would get better! He went on to explain that she will need Chemotherapy and Radiation to make sure it doesn't come back. My heart sank I was secretly hoping that they got it all and maybe some medicine and we would be done. I guess that's not the road we get:( He tells us we need to go to the hospital for some scans on Monday to make sure it didn't spread to any where else in her body. Ok a lot to take in but ultimately the ending will be good, There is a light at the end of the tunnel.

So we go to get Kylie in the play room which is really the treatment room, Forgot to mention that she can get her chemo right at the dr.s office which is great no hospitals!!!! That will be much easier for her I think. We walk in and she is sitting in a chair with my mom just crying saying she wants to go home!! She is breaking my heart!!!!!!! There were 2 kids in the room hooked up to IV poles and playing. One of them had no hair. She was totally scared! Poor kid I don't' blame her she has no idea what is going on. How do explain to your 8 year old that that will be her soon :( I had no idea how to tell her. They then needed to get some blood. She hates needles, Oh boy this is going to be a very LONG road!
We get the blood with only a few tears and go home. I was actually in better spirits after that appointment I think the unknown is worse then dealing with it.

I still cannot believe this is now my life and I have to do this to my child!!! All I know is nothing is important now except getting Kylie better and keeping savanna and the new baby healthy. Amazing how quickly your priorities change in the blink of an eye. Nothing else matters but your family.
Thank God I have the husband I do He has been incredible so far!!! I can't imagine having to do this without him. I am also thankful for my extended family who i know will be there to help in any way that they can.
Next post I'll tell you about all the scans done at the hospital.

Sunday, March 13, 2011

In One day your whole life can change!!!!!!!!!!

Well its been awhile since i last posted. Things were going good, we made it through the holidays and cold winter months! We even found out that baby #3 is on the way. Due to come at the beginning of August!!





So everything is going good and SLAM you find out the WORST possible news you have ever heard!!!





It all started when my daughter woke up with a sore throat. Check her throat and her tonsils are so swollen they are touching. So no school and off to the pedi we went. Didn't do anything but refer us to an Ears Nose and throat dr. Got an apt. for the following week.


Go to the ENT and they give her antibiotics and steroids to shrink the tonsils. Also said that her tonsils need to come out but they need to shrink before they can. Take the meds and she feels fine! But her voice sounds funny like she has marbles in her throat. Go back to the Dr. the following Monday they check her throat and have to put a tube down her throat to check because her tonsils are not swollen anymore. She says she sees something in her throat that doesn't belong there and will need to be taken out. What????? Are you kidding me I thought it was just tonsils. So we got referred to a pediatric specialist ENT. Set up an appointment for later that same day. So off we go again to another dr. He took one look and said ok I'm in the operating room this Wed. we'll set it all up. Ok so fast.... So now all i can think is this is bad!! I ask do you think it could be cancer (the dreaded C word!!) He says i just don't know until we get in there and see what we are dealing with. If I can take it all I will if not we'll do a biopsy. My heart dropped!!! There is no way it could be anything its got to just be some kind of growth and they will remove it and we'll be fine! So we go home (me in tears) and try to be calm! Yeah right! Poor Kylie was a nervous wreak for those 2 days before surgery. She was just so scared to go to the hospital!!
We went for surgery and she was fine once we got to the hospital and everyone was super nice to her!!!!!! Yale is a great hospital, they made her feel so comfortable! Surgery lasted about 35 minutes and she woke up from anesthesia great! We were so happy it went well. That was until the Dr. came to talk to us. He sat down next to me and said well everything went good but its not good news. Well that was it i don't really remember to much after that. Just crying uncontrollable!!!!!! He told us that a friend of his a pediatric oncologist was going to come down to talk to us. ( In my head i remember saying a what why??) I just couldn't comprehend it! Well we met Dr. Joe (he is fantastic!!!!!) He said he took a look at the biopsy and thinks he knows what it is and that he wants to see us in his office on Friday. The next couple of days were a blur. My mom and sister came to stay with us for a couple of days. I was pretty much useless, every time i looked at my baby girl I cried.
How could this possibly be happening to us! Why did it happen to her. Its not fair!!!!! Lots of emotions in a couple of days!!! But through it all Kylie was upbeat and was healing great from surgery. She just didn't get why everyone was so upset!!
Well enough for now I'll post the rest of this nightmare tomorrow i just need to go to bed!

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