Monday, July 30, 2007

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.

Saturday, July 28, 2007

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.

Friday, July 27, 2007

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!

Sunday, July 22, 2007

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.


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!

Saturday, July 21, 2007

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

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.