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.