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


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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