Friday, November 30, 2007

Make A Child Smile

Kelly is featured on a website this month called Make a Child Smile. This website features three kids a month with life-threatening illnesses. People who visit the website can learn about the children and send them mail to cheer them up.

Visit Make a Child Smile at to see Kelly!

December has always been Kelly's favorite month and it looks like she is going to have a very good one this year. Make A Wish is coming to our house Monday to talk to Kelly and help her decide on her wish. She has some things in mind that she'll talk about with them, then they will help her come up with a wish that will enable her to do what she wants to do. We will write more about Kelly's wish after she talks to her wish granters and they help her make her wish happen.

Thursday, November 29, 2007

We are not alone.....

Kelly met another new friend today. We went to the clinic at CHOC to have her labs done, then we went to visit her new friend, Diana, who is still in the hospital. We hope you feel better soon, Diana, and don't have to stay too much longer. Kelly will come visit you again though if you do. Then we went across the street to visit Cheyenne and her mom. Cheyenne is also an oncology patient at CHOC being treated for a brainstem tumor. We had been reading her website and I have talked to her mom, Virginia, and we finally got to meet. Cheyenne was having a CT scan done, so we went to see her there, then we went out to lunch together. She is such a cute, endearing girl. Kelly is looking forward to seeing her again. Even though Cheyenne is only 7, the two of them had so much fun together. She is the oldest 7 year old I have ever met.

It has been nice recently to get to know some of the other families going through what we are going through. We felt so alone when we first began our visits to the clinic. Now, it has become a way to connect with other families in similiar situations. It is good for Kelly, and it is good to me to talk to other moms. I have learned a lot in the last couple of weeks, just from talking to the other moms who are walking through the same fire we are. It is a whole new world we have been thrown into and it helps knowing others who are there also and be able to support each other.


Monday, November 26, 2007

Chemo Day

Well, today was a chemo day. I had to be hooked up to an i.v. pole for FIVE WHOLE HOURS!! Well, I guess that only having to do it once every two weeks is a good thing though. Others are not so lucky.

I met a nice girl named Diana. She is 15 too. We were chemo buddies for the day, and we watched Phantom of the Opera. She named her iv pole(her boyfriend) David Beckham. So, I named mine Bullwinkle. We actually had fun together. I just hope it is as fun in two weeks. Diana, if you read this, will you meet me at the clinic in two weeks? I'll bring the beef jerky! I hope you feel better and get out of the hospital tomorrow.

Henry, Thanks for all your interesting stories! I like to read them.


Thursday, November 22, 2007

Happy Thanksgiving

We are enjoying a peaceful Thanksgiving today with our whole family all together. That is something we don't take for granted anymore and it is something we are so thankful for. I think we have a new appreciation for the five of us being in one place at the same time. Even though this has been a tough year, we have a lot to be thankful for. Going through an experience like this has shown us what wonderful friends and family we have that have been such a saving grace to us.

We are so thankful to everyone who has been there for us and then some. We wouldn't be getting through this as well as we are without our friends and family helping us so much.
We are thankful to everyone we know and a lot of you we don't know who are praying for Kelly. Thank you so much and keep it coming.
We are thankful for all of Kelly's wonderful doctors and nurses at CHOC who take such good care of her and make her feel so comfortable.
We are thankful that Kelly feels as good as she does.

We hope everyone has a wonderful Thanksgiving today with family and friends.

Kathy, Kevin, Kelly, Megan and Shannon

Tuesday, November 20, 2007

False Alarm

We are home from CHOC after our early morning labs recheck. Fortunately, Kelly's counts were much better today, so they let us go home. She didn't need a blood transfusion today. They think there may have been a faulty reading yesterday, or there may have been a problem with the blood draw. At least we know her counts are within a safe range for now. So now we are off to pick up Shannon early from school so she can get her braces put on.

Thank you so much to everyone who offered to donate blood for Kelly. Chances are, she will eventually need it. Next Monday they are adding another drug to her chemotherapy and it is can make her platelets go down quite a bit, which is another reason they would need to give her blood. If anyone is interested in donating blood, here is information for donating at CHOC:

CHOC Blood and Donor Services
(714) 532-8339

505 S. Main St. Suite 185, Orange,CA
M-F 7:30 am - 7:00 pm

Monday, November 19, 2007

Dad's Home!

I am happy because my dad came home this morning! He flew in from Hawaii and we picked him up from Orange County Airport. My mom got out of the car to greet him. I leaned out of the car. He is here for a week for Thanksgiving. We get to decorate for Christmas while he is here. I can't wait to get out the tree, stockings and all the decorations. Christmas is my favorite time of year!! Dad is happy to be home and can't wait to cook our turkey for Thanksgiving.

I went to the clinic today to see my doctor and have labs done. Whoo hoo. My nurse called tonight and my counts are really low, so I have to go back tomorrow and repeat the blood work and get treated if everything is still low. One treatmeant happens to be a blood transfusion. I don't mean to sound like a sissy (or Megan), but eww. I mean, this is someone else's blood being put into me. Does anybody have 0 negative? =)


Saturday, November 17, 2007

MY Version of Yesterday, and the Night Before.

Once upon a time, I went to La Jolla for a Gamma Knife "surgery". So, we went to an appointment to get an idea of what was going to happen the next day. This lady walks out from behind a big, white desk, and starts a movie. It was a horrific experience. I will not say what was on it in detail for fear that the kids who read the post will never sleep well again. But I will say that it showed what they were going to do to me the next day. It involved a big metal helmet and screwing it into place. A week before, I had told a nurse that I wanted to be completely knocked out the whole time. Well, the nurse THERE said that I would be WAKING UP before the end of the procedure. I got very nervous. So, she gave me a pill that would help me relax that night, and the next morning. Well, a few hours later, my mom, aunt, Linda, and I, found out that it should be called the "be happy pill". I was smiling, and laughing, and giggling. Apparently it was so funny, that my mom shook the bed she was laughing so hard. And that was that was just HALF a pill. The next morning, I took the other half. I was not so giggly because I was a bit more nervous. I was a little more calm though. So they to me in the back, gave me the sleep cocktail, and I fell asleep. It turns out that when the nurse had said, " waking up", she just meant drifting in and out of conciousness. Towards the end, I became more alert. I looked around, and saw lot of nurses. I also discovered I was still wearing the heavy helmet that made me want to lean forward. Well, I look to my other side, and see the the scariest thing of all. Dr. Loudon was standing there hold a big, electronic, heavy duty, screw driver! I stared in horror and asked," Will my head be numb?" Of course he laughs then says, " You will be more than numb." That was kinda scary too. But all they did was just knock me back out with more sleepy stuff. When I woke up, the helmet was gone, and I just had two big bandaids on my forehead. Then we left, and started our drive home. On the way, I ate two taquitos, a bowl of rice, two hard shell tacos, a bowl of french fries, a big glass of lemonade, and two water bottles. I also had a big bowl of brown rice pasta when I got home. Mom thinks they put decadron in my IV. It helps keep the swelling down, but makes me eat a lot. Mom took advantage of my big appetite and loaded me up, since I usually don't feel like eating. Today I feel much better!



Friday, November 16, 2007

Sweet Dreams

We are home from La Jolla and everything went well. We drove down early yesterday and had time for lunch in the village on a patio with a view of the ocean. It was a beautiful California day, so it made the day seem almost like we were on vacation. At least for a short time. Then we went to the Gamma Knife Center at Scripps Memorial Hospital and met with a nurse, then the radiation oncologist. Kelly was a little nervous after watching a video of the whole gamma knife radiosurgery. She realized what was involved having her head fit with a frame that would have to stay on the entire time (which is attached with pins.) They sent us to the hotel with "a happy pill" to help Kelly relax that night. She was so cute - very smiley and giggly at everything.

Friday morning we arrived at the hospital early and the anesthesiologist met with us and told Kelly she could be asleep for most of the morning, and when she wasn't asleep, she wouldn't care what they were doing. Ahh, the marvels of modern medicine. This made Kelly feel much better.
The morning went much faster than we expected. After she was fitted with her frame (while sound asleep) she was taken to MRI. This is what they use to plan her treatment area. Dr. Loudon went over her MRI with me and showed me what their plan was. Before we knew it, they were done and he seemed very pleased with how everything went. She says the only things she really remembers are dreams she had while she was asleep.

She is pretty sore from the pin sites and we are using ice packs to help her through today. She should feel better tomorrow. She has been very brave through all of this. She has gone through more than any 15 year old should have too and doesn't complain.

They will watch her now and do an another MRI in about 6 weeks. She will continue on her current chemotherapy plan. Thanks for all of your positive messages. They really help Kelly feel better.

Monday, November 12, 2007

A Different Game Plan

We went to the clinic at CHOC today so Kelly could begin her new round of chemotherapy. It seems her protocol keeps changing. We were originally told she would be receiving Irinotecan for 2 weeks, 5 days a week, then have a 2 week break. Now they told us they are going to give her a much stonger dose, once every two weeks. She will also be receiving Avastin by IV, but they don't want to give it to her until after she had the gamma knife procedure because the side effects might interfere. Today she had her first Irinotecen IV and she is tolerating it very well. Although she did come home and go right to sleep on the couch. In two weeks she will have both Irinotecan and Avastin and will continue that way every two weeks. She is very happy she doesn't have to go into the clinic everyday like we had first been told we would be doing. It was very confusing to keep hearing the changes, so they finally paged Dr. Kirov, her primary oncologist who plans her protocol, to come talk to us. After he explained his decision based on the lastest studies with Kelly's type of tumor, it made more sense. It was good to hear him talk about it.

Thursday we go down to San Diego for the gamma knife. She has two appointments on Thursday, then the procedure will be Friday morning. At least we don't have to worry about working her chemotherapy around it as were originally thought.

A Huge Thanks to everyone for all of your support. From the wonderful meals, rides for Megan and Shannon, and all of the positive thoughts and prayers. Keep the prayers coming that this new chemo will prevent another recurrence. Kelly loves to read comments left for her here, so please take a moment to cheer her on.


Friday, November 9, 2007

Goodbye Porcupine Quills

I finally got my stitches out! I went to Dr. Muhonen this week and he just cut them off. First, he said that someone else was going to do it. Instead, I asked him to do it, because you know, I thought he had done it before and he had done such a good job with my brain surgeries. (Not to mention he put them there.) I am just so comfortable with him. As it turns out, he said that he has never done it before. So, I got nervous and asked for someone else. He said, " No, you asked for me, I am going to do it. Now where is my 9 iron?" I could tell he was kidding, but still, when someone is using very sharp scissors so close to your head, YOU DO get nervous. If it's your first time that is. It turns out that he just cut them off and they were gone. Now I can wear hats, and they won't get caught on any quills. The stitches were very stiff and pokey and they caught on anything that came near them, like my hair. I poked my mom a couple times when she hugged me.

My mom was very happy that I finally had two decent meals yesterday. Thanks for the meatloaf, Mrs. Maganini and the soup, Mrs. Gaudet!


Friday, November 2, 2007

La Jolla Here We Come

We have Kelly's gamma knife procedure scheduled. It was harder than we thought to get her on the schedule since the Newport Beach location isn't operating right now. She is scheduled for Friday, November 16th, in La Jolla, near San Diego. They want to have her down there the day before so we can meet with the radiation oncologist who will be working with Dr. Loudon, the neurosurgeon from CHOC that will come down for the procedure Friday morning. The gamma knife center will put us in a hotel Thursday night. We are hoping to make this just a little bit fun for Kelly. La Jolla is a nice place to spend a couple days, so we to do a little bit outside the hospital while we are there.

Kelly has been very tired, so we are keeping an eye on her to see if we need to run some tests to find out what is going on. She has perked up today since our friends from Texas have arrived for a long weekend. Sharon and her daughter, Allison, who is Kelly and Megan's age, are here for a visit. It is great to have them here.