The Best Christmas Present

We just got home from the hospital and we have very good news. Kelly's MRI was clear - there are no signs of tumor at all right now!! It feels so wonderful to get good news. I feel like I can breathe easier for six more weeks. This doesn't mean there are no cancer cells left, but they haven't grown in the last six weeks. She will still continue her chemotherapy and will have another MRI in 6 weeks.

We are having such a nice Christmas - and now this news makes it so much better. Tracy, my sister from Oregon, is here with her family, and last night Jenny, my sister from Florida arrived with her family. It is so nice to have a houseful of family to celebrate the holidays with. Our season truly is merry and bright.

Kelly is having a bit of hard time since her last chemo on Monday. She is more tired and nauseous than before, but at least now we now we know the chemo is doing its job. Thanks so much for all your prayers and good thoughts - it is really helping.

Merry Christmas

Merry Christmas to everyone who has been so wonderful in your support for Kelly and our family! Here is a link for a Christmas greeting from us.

http://www.elfyourself.com/?id=1406030815

Kelly spent Christmas Eve in the hospital for her chemotherapy but we were home by 5:00. The exciting thing that happened was the motorcycle ride to CHOC. Over 1600 motorcycles rode to CHOC on Christmas Eve to deliver toys to the patients. Kelly was interviewed by ABC news and was on TV that evening! If I find video of it, I'll add the link later.



Kelly's MRI is tomorrow at 1:00 - remember her in your prayers!

Joy to the World

Thursday was a day I will never forget. Thanks to our friends Linda, Terri and Darla and her mom for coming up to CHOC to share this special day with us. When we arrived, there were many gifts in the front of the conference room where the presentation was going to take place. A lot of the neurosurgery staff was there. While we waited for Dr. Muhonen to come from surgery, Dr. Loudon did some magic and even taught us some of his tricks. He couldn't show me all of his tricks or he said he'd have to kill me. (which is counterproductive to his job) He also told us about some generous people, that were also at the presentation, who donate money to their Neuroscience Institute and part of that was to recognize certain patients. Then Dr. Muhonen came in and they explained why they chose me. They said I had been through so much this year with four surgeries, radiation, chemotherapy and even a recurrence of the cancer. Dr. Muhonen asked me to come to the front of the room as he told my story. He said he admired how brave I was whenever he had to give me bad news. He also liked the fact that I always seemed to have a smile on my face. As he told my story, a lot of the adults were teary. It was very touching for them.

Then he asked Megan and Shannon to join us in front and he gave us our presents. I was amazed at the gifts I received!! I got a macbook laptop computer, a red digital camera, a Wii game system and games, and a couple gift certificates. Megan also got a computer, an iMac, a digital camera and a gift certificate. Shannon was so happy to get Julie, the American Girl doll she wanted, plus outfits for her. She also got a Nintendo DS with some games. We couldn't believe all the wonderful gifts we were given. That wasn't all. We also got gift certificates to Disneyland to spend the night at Paradise Pier Hotel and to renew our annual passes. Erin, who works with Dr. Muhonen, was so wonderful since she did a lot of the shopping. Erin, you did such a great job getting just what we wanted, if not more! We can tell you spent a lot of time doing all that for us. We can't thank you enough.

Since we live in Orange County, we have never stayed at a hotel at Disneyland before. It was so nice to have a hotel room there. We watched the fireworks from the rooftop pool on our hotel. Thanks for coming back up to meet us Linda! This was one of the most amazing days of my life! Thanks to Dr. Muhonen and everyone who made this day possible.

Since this is already Saturday, I have some more good news! MY DAD CAME HOME FOR CHRISTMAS TODAY! He'll be here until Thursday. We are so happy to have him home!

Love, Kelly

Make A Wish Harbor Cruise

We have had an amazing week, I need to break it into a couple different posts. Wednesday evening, Kelly was invited on a Holiday Harbor Cruise of Newport Harbor by Make A Wish. Our entire family was invited, but Shannon was sick, and Kevin wasn't home, so our friend, Linda (our stand in family member!) came with us. The boat was beautiful with 3 decks, wonderfully decorated for Christmas. We met our friends, the Diemers that we know from the hospital, and it made it more fun to spend the evening with them. We had dinner, then Santa arrived. Each Make A Wish Child was called to come see Santa with their family and was given a gift.

This picture is Kelly and Chloe, who is also being treated at CHOC.

Megan and Kelly had fun getting to know her older sister, Ashley.
Newport Harbor was is so festive at Christmastime. Most homes and many of the boats were decorated and lit for the holidays. We had such a wonderful night.

This tree was beside our table. Everything on this boat was
beautifully decorated.



If you click on the photos on our website, they will enlarge and you can see the details close up!

A Special Presentation

I was going to wait until after this event to write about it, since I don't know too much about it yet, but the girls wanted to let everyone know what they were doing Thursday. Kelly's neurosurgeon, Dr. Muhonen, is doing a special presentation for Kelly, Megan and Shannon. Every year he chooses a few patients to fill their Christmas Wish Lists and he wanted Kelly to be a recepient this year. The girls have given him their wish lists and he will be giving them gifts and surprises at the presentation Thursday morning at CHOC. Then we go to Disneyland and spend the night at Paradise Pier Hotel at the Park. We feel so fortunate to have this happening for the girls. Kelly has always had a special connection with Dr. Muhonen and is so excited he picked her. We are very thankful to him and his staff for making this happen. Kelly will write more about this after we return. Friends are welcome to attend the presentation, which is 9:00 Thursday morning. If anyone is interested, contact us and we will give you more details.

We have so many special events happening this month; it has been such a memorable December so far. All of these positive experiences have been such a blessing to all of us.

Kelly does have a lot happening medically next week. She will be in the hospital Christmas Eve Day receiving her chemotherapy, but we will be home for the evening. What we really need special prayers for is her next MRI, which is December 26th. She will have it done in the hospital, then we'll go right upstairs to Dr. Muhonen to go over the results with him. We are praying that the chemotherapy has been working and she won't have another recurrence.

Neurosurgery Party

Yesterday, me, my mom, and Shannon went to a party at CHOC. It was for the kids who had had neurosurgeries this year with Dr. Loudon and Dr. Muhonen. Well anyway, Shannon and I got to pick out a gift from a very very large pile. I got the game, Mouse Trap. I had wanted it since I was little. Although Dr. Muhonen was sad to part with it. : ) We had lunch, and played games. Shannon got her face painted, and I won a beanie baby. It was funny because Dr. Loudon looked like a german elf. He was wearing leiderhosen and a small pointy green hat with pointy ears.

It was nice to see Jody and Myrlee since I haven't seen them in a while. (Which I guess is a good thing since it means I haven't been in the hospital in a couple months.)
Kelly

CHOC patient Christmas Party

Monday night CHOC had a Christmas party sponsored by Disneyland. Kelly had her long chemo day beginning Monday morning, so we just stayed at the hospital until the party started at 5:00. Thanks Beth, for bringing Shannon up to meet us! She wanted to share the fun with Kelly. Diana was also at the clinic that day, so she and her mom stayed with us for the party. Her grandparents brought her younger brothers. They also met Cheyenne there. One of the things the girls liked best about the party was that most of the therapy dogs were there with their Christmas outfits!

The girls met some firemen that were there and were given fireman hats that they wore the rest of the evening (over their beanies, of course.) We didn't stay too long since it was chemo day and Kelly was feeling pretty tired. This Saturday is another party at CHOC - this time it is given by Kelly's neurosurgeons for their kids that have had neurosurgery this year. It is fun to have so many fun events this month to look forward too.

Kelly did bring the Gingerbread Hospital to the party. Disneyland brought a huge Gingerbread Castle and they put GHOC inside it. As we were leaving and Kelly was carrying it out, one of the Disneyland pastry chefs stopped her to compliment her on the Gingerbread Hospital. He invited her to come to the Bakery at the Disneyland Hotel where he works. We will try to go next Thursday when we are there! He gave her his card to call him first before she comes. Want to meet us there, Diana?

GHOC

GHOC, or Gingergbread Hospital of Orange County, has been completed. Here are the artists (Diana and Kelly) and their work of art with views of the front and the back (which they left open to see the inside of the hospital.) They also wrote this poem which was inspired by their masterpiece:

Twas the Night Before Christmas (at GHOC)

T'was the Night Before Christmas,

And throughout the top floor,

There was not but the sound,

of a few swinging doors,

With Kelly and Diana,

Hooked up to their poles,

And bandages covering

their recent poked holes.

With Cheyenne in her tub,

I guess it was luck,

that she happened to have

a blue rubber duck.

When all of a sudden,

the girls heard a big noise,

and they were awakened from their dreams

of really cute boys.

They rose from their beds,

with a mind of great wonder,

They went to the window

to see what was yonder.

They poked their heads out,

and heard a loud whirling,

They looked to the roof,

to see chopper blades twirling.

They raced to the roof,

IV poles in each hand,

to see a great helicopter

starting to land.

When the chopper touched ground,

the girls went to see,

And what was inside

filled both teens with glee.

Inside was no doctor,

or patient that's sick,

who was inside,

but good old St. Nick.

And then he stepped out,

with a bag full of toys,

and many different gifts

for the girls and boys.

Under the tree

he placed gifts for all,

Yes, under the tree

that was eleven feet tall.

Then he jumped in his chopper

and started to fly,

as he sang "Merry Christmas"

and flew through the sky.

by Kelly and Diana

The girls wrote most of this poem today at the clinic after Kelly had labs drawn and Diana was getting platelets. They finished it at home while they worked on GHOC. You can see from the photo below that there really is a helicopter with good Old St. Nick on the roof.

These girls have discovered that their journey through cancer is much more tolerable with fun and humor. Way to go girls!!

Party at the Clinic!

Yesterday at the clinic, I saw my doctor and I had to have labs done. It was funny though, because Diana was there getting Chemo. I saw her as she was leaving, but she said that she would come back after she had radiation. My appointment was at 10. It was about 10:45 when Cheyenne arrived, and I was still in the waiting room. So, Cheyenne and I decided to share a room. So we hung out, talked (alot), and played a spiderman game on the t.v. (not that we knew how to play) Soon after, Diana texted me and said that she was done and was coming back up. When I wrote her back, I put, " PARTY!!!" And it was. When she came in, it was me, Diana, Cheyenne, and all of our moms. Not to mention Dr. Esparza when he came in. It was actually fun. Cheyenne and I got checked out, did labs, and then we all ate lunch downstairs in the hospital cafeteria. Not Dr. Esparza though. We ate outside, and it was pretty cold. Cheyenne had to leave early, so Diana and I were alone at our table. Well, we had some left over food, so we decided to have some fun. We mixed all of the food and called it," Coratapecoan." Interesting, I know. But we used the first two letters of every food we used. After that, we went to Starbucks. There, we planned that Diana and I would build a two story ginger bread hospital. It would be made entirely out of candy. It would be open in the back so you can see inside. We decided that the name should be GHOC. Gingerbread Hosptial of Orange County. We were going to use the first two letters of our names. But it was Di and Ke. We put them together, and well, it didn't really work when we spelled it out. So, then we all went home. I fell, asleep, then Make a Wish came over. I decided that I either wanted to go on a cruise, or to a snowy cabin. It was a fun day, and I can't wait until we start building GHOC.

Kelly

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 http://www.makeachildsmile.org/featured_kids.shtml 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.

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.

Kathy

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.

Kelly

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.

Love,
Kathy, Kevin, Kelly, Megan and Shannon

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
donatebloodforkids@choc.org

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

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? =)

Kelly

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!

THE END!

Kelly

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.

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.

Kathy

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!

Kelly

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.

New Treatment Plan

We spent most of today at CHOC, Kelly is worn out. We started with Oncology. We have decided that Kelly will start her next round of chemotherapy on November 12. She still has one more neurosurgery procedure next week. (I'll get to that below) She will do 2 weeks of IV chemo,then 2 weeks off. We will be driving up to CHOC 5 days a week for 2 weeks for this treatment, so she can do it outpatient. She will also continue her oral temodar she was taking before, but will have a stronger dose.

She also had her pentamidine IV treatment today. This prevents her from getting sick, but she feels lousy the day she gets it. We usually go right home afterwards so she can sleep. But today we had another appointment with neurosurgery.

We saw Dr. Muhonen first so he could make sure she was doing OK after her surgery. He wants to leave her stitches in one more week. Her incision looks good, but he is being careful because her skin has been radiated and it doesn't always heal as quickly. Her vision is doing much better after this surgery. He then explained to us that at the meeting about Kelly's treatment plan, they thought it would be a good idea for her to have gamma knife radiosurgery. His partner, Dr. Loudon, is trained to do this, so he came in next to talk to us.

He drew pictures and used her MRI scans to show us how he wanted to use the gamma knife (a form of very focused radiation, no real knife involved) to create a boundry around the area where her tumors have been. This will hopefully keep the remaining cancer cells from spreading to other parts of her brain. We felt better after his explanation. She will have it done at either Hoag Hospital in Newport Beach or Scripps Memorial Hospital in La Jolla. They will let me know when they get it scheduled for sometime next week.

Dr. Loudon could see Kelly was a little shaky after all of this, so he made her feel better by doing some really cool magic tricks for her. I think she feels pretty comfortable with him now! She also had to go downstairs and have some X-rays taken to get ready for next week. I have those now and will give them to Dr. Loudon when he does the Gamma Knife Procedure.

Here is a link that explains the gamma knife:
www.floridabraintumors.com/leksell.html

A Wonderful Evening

Saturday night was an exciting night at our house! (This was before Shannon's staples!) As most of you know, my girls are very involved in dance. One of their favorite shows is "So You Think You Can Dance." Kelly was talking about this show to a good friend of ours, Clare, who was also Kelly's fourth grade teacher. (top photo) They always had a special connection and Kelly goes over to Clare's house to spend time with her and her 2 year old twin girls. Kelly mentioned that Mia Michaels was her favorite choreographer and that she really liked her work. So Clare emailed Mia and told her about Kelly and how it would be so special if she could meet her. Mia emailed Clare back and said she would like to make it happen. Mia's assistant called Clare on Friday and said Mia had some time Saturday evening and would like to meet Kelly. Mia and her assistant, Teddy, came down to our humble house in Mission Viejo Saturday evening!! It was so exciting to meet her. Naturally, we had to have the important dance people in our lives here, so we had our good friends, Kristi, the girls' dance teacher and owner of the dance studio, and Stevie, who is another dance teacher at our studio. Megan also had her good friend Amy Jenkins over since they have danced so much together for the last three years. And of course Clare and her family were here since she was the one who made this happen! We can't thank you enough Clare. This meant so much to Kelly. It was so great to have something so positive and exciting happen right after Kelly's surgery and week in the hospital. The timing couldn't have been better.

It was truly an amazing visit. Mia is such an inspirational person and was so nice to Kelly and everyone else. She and Kelly are planning to stay in touch now.

note: I am having trouble uploading photos for some reason. If I get it figured out, I may add some more photos later.

Enough Already......

I just returned home from the hospital again. But this time it was CHOC at Mission and the patient was Shannon. She hit her head on our coffee table and had a nasty cut. So we ended up in the emergency room and she now has 6 staples in the top of her head. Now I have Kelly's stitches and Shannon's staples to keep an eye on. They told me to take her to her doctor in 2 days to check the wound, but I am so used to checking Kelly's stitches, I think I can handle this.

Back Home Again

Kelly was discharged from the hospital tonight was greeted at home by Megan and a group of friends. Thanks so much to the Elliots and Dobbins for making her homecoming special. Thanks (again!!) to Linda for spending so much time with us at the hospital this week and waiting all day with me for Kelly to be discharged. Terry, your sign is beautiful. Kelly loved it.

Kelly is recovering nicely. She will have a follow up appointment with Dr. Muhonen next Tuesday and then he will let oncology know when she is ready to begin treatment. We will meet with oncology after that. So we really don't know when she will start her next treatment, we should find out next week.

The Next Day

Kelly continues to recover today. She is doing pretty well for what she has been through yesterday. She is having a little more pain tonight and finally agreed to some morphine, which she has been turning down all day. She was moved out of Intensive Care tonight and is back on the fifth floor, where she has been before since it is the neuroscience floor.

She had her MRI this morning and her doctor was successful removing all of her tumors. However, because of what has happened since her last surgery with the tumor recurring so fast, they know that there are cancer cells left in her brain. The last treatment obviously did not kill them, so they are will be treating her even more aggressively now. We are still waiting to hear from oncology what the new plan is. They are waiting for the final pathology report.

Thanks to everyone for posting comments to her. They really cheer her up. We really appreciate everyone's good thoughts and prayers!

Surgery Update

Kelly came out of surgery at about 5:00 and is recovering quite well. Her doctor is amazed at how alert she is after the surgery she just had. As I write this, she is enjoying a popsicle in the beautiful, brand new Pediatric Intensive Care Unit. It is so nice to have a private room and she likes having her own TV.

Dr. Muhonen was able to remove the tumor, but as we feared, it is the glioblastoma. It is behaving very aggressively and has already grown since her MRI last Wednesday. We will find out this week what her next treatment plan will be.

We really appreciate all of your kind thoughts and prayers. She really needs them now more than ever as she has a really tough fight ahead of her.

Thank you so much to Linda and Tricia for spending today with us. It helped so much having you here.

The Waiting Game

We arrived at the hospital at 7:00 am this morning to be ready for Kelly's surgery. She had to have an MRI first. But just as she was ready to go to surgery, her neurosurgeon was called to an emergency surgery at another hospital close by. (There are only two pediatric neurosurgeons in Orange County.) So we had to wait a good part of the day to see if he would have time to come back and do Kelly's surgery. Luckily, he came back and she went to surgery at 3:00. He expects it to take about an hour and a half since he is going in the same way he did before.

We are just glad we didn't have to go home and come back tomorrow, especially since Kevin is leaving tomorrow night. As soon as we have some news, we will update again.

Friday Update

We have had requests for updates. Thanks to all of you for you kind thoughts and concerns for Kelly and all of us.

We met with oncology today and they are waiting until they see the pathology report after surgery to decide on the next chemotherapy for Kelly. They will meet with her neurosurgeon hopefully Tuesday or Wednesday to come up with her new plan for treatment after she recovers from surgery. We also did all of her preadmitting and presurgery labs today.

One thing that made Kelly feel better today was we found out that CHOC opened their new Pediatric Intensive Care Unit last weekend. It sounds so much nicer than the old one. Whenever Kelly has these brain surgeries, she spends the first couple days in Intensive Care. The old unit was beds with curtains between them - very noisy and not very private. There wasn't much room either. We called it her "slot." It is also not a fun place to try to sleep with the nurses station just outside the curtain. The new Intensive Care sounds like it has been tremendously improved. There are all individual rooms that are large, with a separate sleeping alcove for a parent. I might actually be able to sleep. I always stay with Kelly when she is in the hospital. She feels good knowing she will have such nice accommodations her first couple days. She used to be so anxious to get moved to the 5th floor, where the neurosurgery patients are.

Kevin is flying home tonight! He will arrive early in the morning and be here until Tuesday night. We are all glad he will be here for Kelly's surgery. It will be good to all be together, since our family hasn't been together since July.

I am taking my laptop to the hospital and if I can find a wireless connection, will give updates on Kelly. I know I can get one once she is out of Intensive Care, I'm not sure how it will go until then. It is also pretty hard to use my cell phone while she is Intensive Care. I have to go down to the lobby to use it. So we'll keep everyone updated the best we can.

We are so impressed with Kelly's positive attitude. She has taken this news so well and is always looking at the bright side of this. It is amazing how easily she can find positive aspects of her situation. She continues to be an inspiration to us.

Prayers needed

Kelly had her MRI today. We did not get the news we wanted to hear. Unfortunately, three spots were found on her scan which don't look good. Most likely it is the glioblastoma recurring already. We knew there was a strong chance that it would recur, but we are very disappointed (to say the least) to see it happening so soon. Especially since she has been going through radiation and chemo. Her doctor feels the oral chemo she has been taking isn't strong enough since it is not killing the cancer cells that are still growing. So her neurosurgeon that we saw today will talk to oncology, and they will decide on a different kind of chemo for her next round that will be much stronger. We meet with her oncologist on Friday.

She is scheduled to be admitted to CHOC Monday morning for another surgery to remove these tumors. There is a very small chance the spots could be radiation necrosis, but Dr. Muhonen, her neurosurgeon, thinks there is a much stronger chance that it is the glioblastoma. The only way to know for sure is to remove it and send it to pathology, so that is what he will do on Monday.

We appreciate all your good thoughts and prayers for Kelly as she goes into this next stage of her fight. We need the prayers now more than ever. Kelly is taking the news very well, partly because of all the great support we have received so far. She also totally trusts Dr. Muhonen and feels so comfortable with him doing her surgery. Thanks to all of you that have have helped us so much already with the great meals, rides for Megan and Shannon, and all the support for Kelly.

A Great Week in Hawaii

Kelly and I just returned from Hawaii where we spent the last week visiting Kevin. It was so good to be with him again and Hawaii is not such a bad place to have to visit. This was the trip that was supposed to happen in August when Kelly was unable to go because of her treatments. Kelly was happy to have a week with no hospitals, no Dr. appointments, no treatments. We went boating and snorkeling, hiked to a waterfall that Kelly got to swim under, went to a luau at Sea Life Park, went on a submarine ride and had many other fun adventures. Kelly enjoyed the shaved ice, especially from the General Store in Haliewa.

The Hilton Hawaiian Villiage, next door to our hotel, had penguins in one of their many courtyards. We were there for feeding time and Kelly got to pet one of them! Shannon wants to go back since she didn't get to see these penguins when they were there in August.

Most of all, I think Kelly liked relaxing and not having a schedule - it was a well deserved break for her!

This is the balcony of our hotel room. The ocean is the blue beyond the palm trees. It was nice to be on the ocean for the days we didn't feel like going anywhere.

Today was our first day home, and Kelly started off right away with an appointment at CHOC to have her labs checked. Tomorrow she has her MRI, so we are praying for good results.

Next Steps

Kelly had her weekly clinic appointment today at CHOC. Her monthly IV pentamidine treatment made her pretty lousy. Luckily this is the only medication that she has had a bad reaction to so far. Her counts are holding steady - a little below normal, but good enough to get on an airplane without having to wear a mask, which she is very happy about. We are leaving for HAWAII this Sunday! Kelly never got to go see Kevin in August as we originally planned, so I am taking her for a week during her treatment break. We are very excited to see him, as we haven't all been together since he was home for her surgery in July. Megan and Shannon will be staying with friends here so we don't have to take them out of school. Thanks Elliotts and Schultes! The girls are looking forward to staying with you. (Although Kelly and I will miss them.)

Kelly's next MRI is scheduled for two weeks from today, October 17th. This is her first post radiation MRI and we are praying it looks as clear as it did right after her surgery. We have an appointment with Dr. Muhonen, her pediatric neurosurgeon, directly after her MRI so he can go over the results with us right away. I am so glad we won't have to wait to find out results, which can be nerve wracking. Her next round of chemo will start after her scans are reviewed.

Ahead of the Class

This morning we had a meeting at Mission Viejo High School to review the results of all the testing they did with Kelly and make a plan for her home teaching for the year. Her test results were very impressive. After her surgery in July, she couldn't read for a few weeks. Even as she began to be able to read, she felt like she was "missing some of it." She has been working on it and reading constantly lately and now she is reading above her grade level again. This was such good news. She is performing above average in almost all areas, which is so good for someone who just had brain surgery two months ago. Our plan now is that her home tutor will come work with her for 5 hours a week doing the work she would be doing if she was in her regular high school classes. One class she can not do since she can't attend school is her drama class. She is very disappointed about this since she has taken drama for the past two years and wants to continue. But since one of our friends teaches ceramics at the high school, Kelly may take that as her elective. She thinks that sounds like fun and she loves to create things.

Tomorrow is her long clinic day at CHOC. We will go over how her next round of chemo will work, what her doses will be, and when it will begin. We are adding another drug to the next six rounds and doubling her temodar, we hope she will still be able to tolerate it as well as the first round.

Happy Birthday Weekend

Kelly and Megan turned 15 last Saturday. We were fortunate to have our friends, Pete and Heather Armes, offer us the use of their Aunt's condo in San Clemente for the weekend. What a wonderful weekend getaway we had. As you can see, there was a beautiful view of the ocean and the pier, which doesn't show in this photo. Pete and Heather brought their girls, Megan and Jessie, down Friday evening so we celebrated the girls' birthday with them.

We had a fun evening with them. As you can see, Megan and Jessie are also twins who go to school with Megan and Kelly. (OK, our girls aren't quite so obviously twins) Pete surprised Kelly with her most wished for present. She really wanted a video camera and was trying to save money to buy one, so she was thrilled to receive this generous gift. Thanks Pete and Heather, for such a wonderful gift for her (and thanks to those business American Express points!) She has been video taping and taking photos ever since. She even made a video tour of the condo because she enjoyed being there so much. What a great place for her to relax and rest. Megan really appreciates her gift also. Thanks for all you did for the girls to make their birthday special!

Later in the weekend, we had a birthday dinner at Fisherman's Restaurant on the pier. It was a beautiful day to have dinner outside on the pier and Kelly was happy with her bucket of clams, one of her favorite treats.

This was our view from the restaurant.

A beautiful sunset from the condo's windows. The girls liked this view so much, they didn't want to leave.

Looking Good

Kelly had her weekly CHOC clinic visit yesterday. Her doctor was very impressed with how well she looked. Kelly just refuses to feel bad. She is still having her weekly labs done, even though she is resting from any treatment right now. We are hoping to see them go up now that her body isn't being subjected to radiation or chemotherapy.

So we had some fun since she was feeling so good. We went to Main Place Mall after her appointment - it is very handy having a mall so close to the hospital. We met our friend Stevie there and saw the movie Hairspray (again.) You just can't help but feel happy when you see that movie. Glad you finally saw it Stevie! This mall has $1.00 movies on Tuesdays, and there are hardly any people there, so it is a safe way for Kelly to see movies once in a while.

It is a happy coincidence that she is on a treatment break since her birthday is this weekend. She should be feeling good and ready to celebrate!

Last Day of Radiation!

Today was Kelly's last day of radiation! This is the mask she wore everyday to hold her head in place for radiation. Before she started radiation, this mask was molded to her face and marks were placed on the mask to help aim the radiation beams. The mask would then be attached to the table she was on. They let her bring it home now that she is done. Needless to say, she is happy not to have go up to Orange everyday for these treatments. She has a 4 week break now before she begins her next chemotherapy round. Hopefully, she'll get some of her energy back during this time. She will be still go to her oncologist once a week and have her labs done just to make sure she is doing OK.

She celebrated tonight by going to her high school football game and a dance afterwards. She had fun seeing her friends that she doesn't get to see at school. Most of all, she got to feel like a normal teenager!

Time For a Break!

Kelly just had her last chemo treatment tonight!! She has one more radiation treatment tomorrow and then she is done with radiation! She is very happy about this. Her radiation therapist asked her what she was going to do at 10:30 every morning now. She has four weeks off all treatment after tomorrow before she begins her next rounds of chemotherapy. This should give her body time to recover and her blood counts to go back up. They are very low right now after six weeks of treatments.

She is doing some testing at her high school to see how her brain has recovered from her surgery. As most of you know, she was having some reading processing problems as a result of surgery. She has definitely improved and is now reading constantly. Thanks to everyone who has sent her book store gift certificates. She has used them all! She will soon begin her home tutoring as soon as her teachers at her high school know if they need to make any modifications for her.

Her doctors have reminded her to stay in touch with her friends - at this point it is very good for her spirits and important to her recovery. So those of you who are friends of Kelly's - please post messages to her here. She loves to read them! It brightens her day to know you are thinking about her.

Contacting Kelly

Kelly is feeling pretty good right now. She is just tired some of the time. She has bravely faced her diagnosis and treatments and isn't complaining. But she is missing her friends since she can't go to school. Now that she is in a routine with her treatments,and she knows what to expect, she is ready to be a little more social. She would love to be contacted by friends. Please feel free to call her now. She would love to hear from some friends. Visits are also OK to arrange with her as long as you are healthy. Thank you all for being considerate so far.

Port-a-Cath Update

It was harder than I thought recovering from my Port-a-Cath surgery. I was pretty sore for awhile. But I am glad to have it now. On Thursday, I had to have an IV treatment of pentamidine to prevent pnuemocystis pneumonia. I had it last month as a breathing treatment and I didn't like it. It made it hard for me to breathe the rest of the day and I felt really faint. So they decided to try giving it to me through an IV instead. They used my port-a-cath and it was so much easier than starting an IV in my arm. They also used my port-a-cath to draw blood. Every week before this I have had to have blood drawn from a vein in my arm and sometimes they had a hard time finding a good vein (not fun!) So it was so nice to just have it taken through the port-a-cath. Even though the port is under my skin, we put Emla cream on first to numb the skin above the port, then I just feel a little pressure, but it doesn't hurt. It is going to make these weekly clinic visits easier!
-Kelly

A New and Different School Year

Happy first few days of school everyone. Except for me . I say this because I will be doing home tutoring my freshman year of high school. Well, I AM a MVHS student, I am just doing it at home this year. I will have a teacher from MVHS come to my house. We also have some nice friends that will help me with my schoolwork. My doctors don't want me to go to school and be exposed to all the germs there. My blood counts are really low because of my treatments so I could get sick much easier and I can't fight it off as well.

In about two weeks, I get to stop radiation, and get a break from my Chemotherepy for about four weeks. Luckily, it is during my break that I am having my birthday, and going to Hawaii. I turn 15 on September 22, and I go to Hawaii for a week starting October 7. I am excited about Hawaii because I get to see my dad. Then I come back and start more rounds of chemotherapy.
So, I hope all of you have fun at school, and I will most likely post again soon.
-Kelly

Meal Coordination

We really appreciate receiving meals now, especially while Kevin is gone. To make this easier, Terry Jenkins has offered to coordinate meals for us. Anyone who is interested in providing food or meals can contact Terry (see below) and she will coordinate a schedule for us. (Thanks Terry!) She is aware of what Kelly likes to eat, but I am going to keep updating her food preferences and tastes on this website. If it feels complicated trying to figure out what Kelly can eat, we also appreciate meals for the rest of the family (Megan and Shannon will be back this Monday) and I will make something for Kelly. She often doesn't have much of an appetite for dinner, although her favorite foods will tempt her to eat. I'll keep updating what her favorites are! Popsicles, especially Dole fruit bars (orange and cream!), are a big hit right now. But she likes any popsicle - they feel good on her dry mouth. She loves the kids' beef and rice bowl with no sauce, from Flame Broiler a lot.

To contact Terry, email her at:
tjenkins44@yahoo.com If you'd like to talk to her, she'll email you her phone numbers.

Kelly's Food Update

Kelly's Tastes are changing quite a bit due to her chemotherapy, and even the radiation since that is making her mouth dry. She really likes fruit still, strawberries, nectarines, peaches, blackberries. Smoothies are still great.
Chicken is out, except in chicken rice soup..
She likes beef, like steak.
Hard tacos are out, but taquitos are still good. (texture is big right now.)
Everything else on the previous list she still likes.

Long, but successful Thursday

After a long day at the hospital, Kelly was able to come home after her surgery to place her Port-a-Cath. She started with radiation in the morning, then went to surgery. She was able to come home a few hours after she woke up and is resting and taking it easy here. She is sore, but this will make her life easier when she is healed. Luckily, the radiation lab is closed Friday and Monday to install a new software system, so she has a long weekend to rest (even though that means doubling up with two radiation treatments a day a couple times to make up for the days she is missing.)

Another reason the day was long for her was she started her day early at Mission Viejo High School registration. Although she won't be attending high school, she wanted to get her picture taken so she would have an ID card and be in the yearbook. It makes her feel more of a part of the school, even though she will be doing her classes at home. She enjoyed seeing some of her friends there.

One More Surgery

OK, this one should be easy compared to the last two. This Thursday, the 23rd, Kelly will have surgery to have a Port-a-Cath placed. This is a catheter placed in one of the large veins in her chest to so she has easy access for medication, blood draws, and transfusions. This will make her weekly labs a little easier for her. She is going in for surgery in the afternoon after her radiation treatment and hopefully will be able to come home the same day.

Kelly's Food Ideas

It is so nice having people offer to bring us food. Many of you want to know what Kelly can eat with her gluten free diet, so we came up with some ideas of food she likes that are also gluten free (wheat free) One thing to be careful about is soy sauce - it contains wheat. Soy is OK, soy sauce isn't. With new food allergy laws, it is required to list wheat as an ingredient now if it is in a food, so reading the ingredients makes it easier.
We'll try to update as her tastes seem to be changing a little bit due to the chemotherapy, but right now she really likes items on this list. These are just suggestions we thought of, I'm sure there is a lot more food that she likes!

*chicken wings (Costco has mesquite chicken wings she likes, I'm sure there are others also)
*Clams from Costco - (microwaveable)
*barbeque chicken
*steak
*mashed potatoes
*cooked carrots
*gluten free soup, especially chicken rice soup, vegetable, anything without noodles or wheat flour as thickeners
*She can eat brown rice pasta, (or anything gluten free) Trader Joe's carries some. Pavillion's is getting some also. I think Henry's does too.
Mother's Market in Laguna Hills carries several kinds. They also have gluten free pizza crust
* one of her favorite meals is pizza made with gluten free pizza crust - just sauce and cheese
*Tacos made with hard corn tortilla shells
*Taquitos
*fruit - strawberries, nectarines, peaches, blackberries,
*Low fat Vanilla Ice Cream
*Popsicles

Restaurant Meals she likes
*California Pizza Kitchen - BBQ chicken salad, no BBQ sauce
*Rubios - kids meal - taquitos with rice
- chicken nachos (she likes nachos from anywhere!)
*El Pollo Loco - chicken, rice. corn tortillas (the rest of us like flour!)
*Taco Bell / Del Taco - Hard tacos
*Quiznos - roadhouse ranch salad
*In and Out - plain hamburger wrapped in lettuce, no bun, french fries OK
*Flame Broiler (Marguerite and LaPaz) Kids beef and rice bowl, no sauce
*Smoothies - any combination that may have strawberry, peach, banana, mango, pineapple.... (yes, sometimes this is her meal when she doesn't have an appetite for a regular one)

We may add another food post as we think of more, but this is a start. Some of you have had some good ideas also!
Thanks for everyone who has generously offered to bring food over. It helps a lot right now with Kevin gone and going back and forth to Orange for treatments everyday.

Aloha Megan and Shannon

Megan and Shannon are on their way to Hawaii today to see my dad. For those of you who don't know, my dad has been working at Camp Smith near Pearl Harbor with the Marines since June and will be there until January. He did come home for my surgery, but then he had to go back to work. We were all supposed to spend most of August in Hawaii with him, but I can't leave right now because of my treatments. I have to be here for them. So Aunt Denise (Dad's sister) took just Megan and Shannon today and Mom is here with me. We are hoping I can go with Mom in late September or early October, when I have a break in my treatments.
Kelly

Thank you Trailmates!!

I had such a great surprise last night. Our friends, the Spencers, came over with a gift from our Trailmates group. This is a group we are involved with through the Y for dads and daughters, an older version of Indian Princesses. We have been with some of these families since we were 5 years old. These families pitched in together to get a wonderful gift for me. They gave me an iPod already loaded with several audiobooks (thanks Tammy!) and an iTunes gift card. They also gave me portable speakers for it. Now I will never be bored in a waiting room again, since I spend a lot of time in them. I was so overwhelmed by their kind thoughtfulness! Arielle and Shira also gave me some handmade gifts. I took the pillow you made to radiation today, Shira. It was comforting. I love the cross stitch you put in the frame, Arielle. It is on my dresser where I can see it. The slinky dog is so cute. I love the milkduds too - I can't believe you guys remembered. Thank you to all the Trailmates for your wonderful generosity. I can't believe what an amazing gift you got for me! It is going to make this year easier to get through. Kelly

My Last Haircut

Today I got my haircut and highlighted. This will be the last time in a while since my hair will probably start falling out within a week or so. We decided to do something fun with it for now. My friend Katie's mom is a hairdresser, so she did it for me. I have never had highlights before - I like it! I wanted to have layers cut since my wig is cut kind of like this.
After a week of treatments, I still feel pretty good, I just need to take naps in the afternoons a lot.
Kelly

Chemoradiotherapy begins

I have had three radiation treatments so far, and they have all gone very smoothly. They have taken me right at my appointment time and the doctor, nurses and therapists all treat me very nicely. My doctor (radiation oncologist) even gave me a box of chocolates on Saturday. I started my chemotherapy Friday also, and so far I feel pretty good. I was worried about swallowing the pills, but they are not as bad as I thought they would be. Since I am doing chemotherapy and radiation at the same time, it is called chemoradiotherapy. The worst thing this week is my radiation therapy is at 7:45 am so we have to get up early to drive to Orange, which is too early to get up in the summer. Next week they are moving my appointment to 10:30, so that will be easier. Thanks again for all your messages! I love to read them.
Kelly

First Day of Treatment........Or not

We were all set for Kelly's first day of treatment today, but it didn't quite go as planned. First, she had an appointment at the Oncology Clinic to see an Oncologist and have blood drawn. After a two and a half hour wait in the noisy waiting room, we finally saw her doctor and had her labs done. Her radiation appointment wasn't until 5:45, so we went to the Block in Orange instead of driving all the way home and back. We saw a movie and had dinner (if you can call Kelly's smoothie dinner.) We got back to the hospital for her first radiation treatment, and after waiting some more - by now Kelly is the only patient left - they came out and told us the X-ray machine was broken and since this was her first treatment, they had to do X-rays first. We waited for the technicians to come in and fix it, but after another hour, we were ready to give up. So we had to make an appointment to come in Saturday since she has to start with at least 2 days of treatment in a row. Normally, she will not have radiation on Saturdays. By now it was 7:00 and my sister Jenny's plane had already landed at the airport and we were anxious to go pick up Jenny, Bob, Kylie and Ryan who flew out from Florida to visit us. So after all that waiting around in Orange, she never did get her radiation treatment. We sure hope today is not going to be our typical day. Thank you so much to Linda, our stand in dad, for spending today (and many other long days) with us! It makes it so much easier.

Kelly's New Hairdo

"Real Hair is overated!"

This was Kelly's reaction when she tried

on her new wig. She has already picked

out a wig to wear when she loses her

hair.She likes it so much though that

she likes to wear it now over her own

hair! This hair is just a little bit darker

than her own. She actually had so much

fun trying on wigs, she would like to go

backand get a second wig that is a little

bit different.

She looked great as a redhead!

Treatments to begin Thursday

Kelly had her simulation appointment with radiation today. They did CTscans to pinpoint where they will radiate her brain. She also got her mask. She will wear this everytime she has a radiation treatment to hold her head in place. It also has marks on it to help them position her for radiation, which is nice since they won't have to put any marks on her skin this way.

She will begin her actual Radiation Treatments and Chemotherapy this Thursday afternoon. She also will have an appointment that morning with her oncologist and have blood drawn. This will become her weekly routine. It is reassuring that they will be monitoring her so closely. We are getting to know Orange very well.

Treatment Schedule Update

We have been getting questions about when Kelly will be beginning her treatment. She had a consultation with her radiation oncologist yesterday, and Monday she has a simulation appointment with radiation. They will fit her with her mask that will hold her head in place for her radiation treatments and show her how everything will work. Then they have to work out the mapping for the machines, which will take a few days. So we are not sure exactly when the radiation treatments will actually start. Most likely it will be toward the end of next week. She will start chemotherapy at the same time, so we will are waiting to find out when that will be. As soon as we know more, we'll let everyone know. Kelly is doing amazingly well. I admire her positive spirit.
Kathy

A Visit to CHOC

I had a follow up appointment with my pediatric neurosurgeon, Dr. Muhonen, this week. Since Katie has been his patient also for a long time, she came with us to see him just for fun (much better than having to see him.) You can see that we actually enjoyed our vist. I am so glad to have Dr. Muhonen as my doctor. Before we left, he told us we were his favorite patients and gave me an i dog and he gave Katie an electronic sudoku. He even did magic tricks for us. It was a fun morning. He said I was healing nicely and I could even go swimming now. I am starting to be able to read and spell a little better now.
Just to let you all know, I am halfway done with my Harry Potter book on CDs. If I could read like I normally do, I would have been done by now!
Kelly

Some photos

Here are some more pictures of last week while I was in the hospital. These are my sisters Megan and Shannon, and my cousin, Emily. We are playing Scooby Doo Clue. This is the day after my surgery in the Pediatric Intensive Care Unit. My cousins from Oregon were here and stayed for my surgery. It was so nice to have them here. Thanks Aunt Tracy and Uncle Tom

I was visited by two therapy dogs while I was in
the hospital. This is Shelly, a sheltie. I loved how they just got in my bed with me. Comers, do you recognize her? They know you.

The big white teddy bear is a gift from my friend, Katie.

This is my friend, Katie. It was so good to have her visit. I don't know what I would do without you Katie. The Child Life workers at the hospital brought me a laptop to borrow. Katie and I had fun playing games on it.

Thanks

It was so nice to see all the nice messages today. Thank you all so much. I love to hear from you.
I have been asked to tell some more about myself. So here goes. I love to read. The bad thing is that I can't read at the moment. My brain is still recovering from surgery and it is having a hard time processing words. Spelling is also still hard. My doctor thinks it will get better in a week or two when the swelling from surgery goes down. (Which is why I am dictating right now to my mom, my typist.) My mom is reading the latest Harry Potter book to me right now since I can't read it, and I am anxiously waiting for the book on CD to arrive. My Aunt Denise sent it to me. I also love Moose, hence my email address. I have collecting them since Christmas. wink, wink, jk. I also love to rock climb (on rock walls.) I am five feet one inch tall, and probably always will be because of the radiation I am about to have, but at least I am happy to be past 5 feet. I love musicals and listening to musical soundtracks. We went to see Hairspray yesterday and I really liked it. We have been playing the soundtrack today!
I am also a big Eeyore fan. One other thing that makes me different is that I am gluten intolerant. That means I can't eat anything with wheat in it - bread, cake, brownies and all that fun stuff. It makes me sick.
Well, that's all I can think of for now. Keep writing back and I will talk to you later!
Kelly

A Note from Kelly

Hey, this is Kelly. I just want everyone to know I feel pretty good right now. Recovery from surgery was not that bad. I am thankful for my friend, Katie Flaherty, who has shared her own experience with me so I know I am not the only one going through this. Thanks Katie! I am so glad to have you as my friend. You have made this so much easier for me.

I love to hear from people, I just don't want anyone to feel sorry for me. I just want to be treated like normal. Thanks for taking time to read my story. Feel free to leave comments for me! I do enjoy them. Right now, I just don't want to talk on the phone too much. Just email me or post comments on this website.
My email address is mustluvmoose586@aim.com
Kelly

Kelly's Story

I have been so busy answering phone calls with concerns about Kelly, we have decided to create a family website so we can keep everyone updated on our family, and most of all, what is happening with Kelly. What a journey she is on.

After a seizure in April, she was admitted to Children's Hospital of Orange County (CHOC) where a small mass was found in her brain. Her doctor recommended that we watch it instead of trying to biopsy it immediately since it was located about two inches into her brain. None of the several doctors that looked at her MRI thought it looked dangerous. Then in June she began having severe headaches and vision problems. She was admitted into CHOC again for tests. Her pediatric neurosurgeon found that the "mass" had grown since her first MRI and now felt he needed to do a biopsy to see what it was. The biopsy showed abnormal cells, so he scheduled her for surgery to remove the tumor, which they were calling a Grade 2 Glioma (they were no longer calling it a "mass"). Brain tumors are graded 1 through 4, with 4 being the most dangerous, fast growing, aggressive type of cancer. So we thought, OK, we can deal with this, it could be much worse. Her doctor recommended that Kevin (who has been working with the Marines on active duty in Hawaii) should come home for this next surgery, as there were certain risks involved since he had to go through her brain to get to the tumor, but we all agreed that the best thing for Kelly was to get this tumor out of her brain.

On July 16, 2007, she had surgery where her pediatric neurosurgeon successfully removed the tumor. He was thrilled with the results of the surgery and the MRI the next day showed just what he wanted to see - a successful total resection (removal) of the tumor. So we were feeling pretty relieved one day post surgery. All that changed the next morning, however. I knew something was not right when they asked if Kevin could come in so the oncologist could talk to both of us. Since Kevin was in meetings at Camp Pendleton, which is pretty far from the hospital in Orange, I met with Kelly's doctors and was given bad news. The pathology report for the tumor that was removed now showed it to be a grade 4 glioblastoma multiforme tumor. This was much worse than the pathology report from the biopsy, but it was much more accurate because they could look at the entire tumor now instead of just the small samples they used for the biopsy. This was the worst kind of tumor she could have. Because grade 4 tumors are so aggressive and fast growing, they know there are very small cancer cells left in her brain that left untreated, will grow into tumors. There is no choice but to treat her very aggressively now.

After her brain has another week to heal from her surgery, she will begin radiation therapy and chemotherapy simultaneously. They are hoping that doing both therapies together will be more successful. She will be part of a clinical trial study. Fortunately, her chemotherapy will be oral medication that she can take at home. I will be driving her to Orange 5 days a week for her radiation, plus one day a week she will be seen by her oncologist and have labs drawn to keep a close eye on her health. We feel very fortunate that Kelly has had such good care so far. We have had such a good experience with the whole neuroscience team at CHOC.

She is in for a rough ride this next year though. She will not be attending her high school in the fall, instead she'll be home tutored. Her doctors don't want her exposed to all the other kids since the radiation and chemotherapy is going to damage her white blood cells and weaken her immune system. We have to watch her carefully for any sign of illness or infection, which can be extremely serious for a cancer patient. Plus, she is just going to feel lousy.

We appreciate everyone's concerns, but right now it is overwhelming to keep answering phone calls. It still is hard to talk about all the time, as this news is still sinking in. Amazing how your life can change dramatically so fast. We would love to hear from you by posting on this website or emailing us. We will keep everyone updated by posting on this website.