Monday, January 26, 2009


Thank you so much to everyone who left nice comments for Kelly here after our last post.  They really helped her (and me!) over a rough patch. (Actually, we love the comments any time.) Not that IV hydration is such a major deal, but Kelly was really upset about having to have medical procedures done to her in our home.  She did get adjusted to it and was OK with it after we got her started. OK, the Borders bribe was really what made her accept it!  She was looking forward to helping with the CHOC Gala Saturday night, and since she was feeling better, I unhooked her from her hydration bag, leaving the IV in her hand so we could hook her back up when she got home.   The Gala was at the Island Hotel in Newport Beach.  Kelly was a greeter as the guests arrived.   Luckily, another family that was speaking at the event had two extra tickets and asked if Kelly and I would like to use them.  Thanks so much Erin!  We really enjoyed it.  So we got to stay and attend the Gala.  Erin's daughter, Sammy, has also been an oncology patient at CHOC and was presenting an award and giving a speech that night.  Sammy is doing great now.  She has been in remission for a year and a half!  It is always encouraging to hear good stories like hers.  Cheyenne and her mom were also at our table.  Below is a pictures of Sammy, Cheyenne and Kelly.  Cheyenne also presented an award.

Kelly was  happy to see her neurosurgeon, Dr. Muhonon, at the Gala.  
She also got to meet his daughters, who are her age.

We were happy to see Cathy, who works for the CHOC Foundation.  She is one of the people at CHOC we are so glad we have had the chance to get to know.

This is Lisa, who also works at the CHOC Foundation, and Virginia, Cheyenne's mom.  After the girls went to bed, the adults stayed downstairs for some fun.  Too bad I had to drive, so I was just the photographer!  The bottles are ice and the martinis would be poured through them.  

Kelly did get tired pretty easily that night.  It was her first time off the couch after 3 days!  So after dinner, she and Cheyenne went upstairs and went to bed. Cheyenne and her mom had a room for the night because they live far from Newport Beach.  By the time I came up to get her, she was sound asleep, so she spent the night at the hotel and I picked her up in the morning. Thanks for having her stay Virginia!  You can see Kelly's hand with the IV in it still!  I did have to hook her back up when she got home in the morning.

Kelly is doing much better now and is planning on going to school tomorrow.  We actually spent the afternoon at Disneyland today (IV free!) since all the girls were off school today.  Thanks so much for all the prayers and good wishes for Kelly.  

Kevin is traveling to Colorado Springs today for the rest of the week.  I'm glad it's not a chemo week!  Megan is the one whose schedule we are juggling right now.  She is in Physical therapy for her ankle, plus she is beginning rehearsals for Singin' In the Rain, which she is very excited about, plus her normal dance classes and homework.  (That darn homework) I really have to thank the Schultes for helping get her to dance when I am driving Megan and Kelly to where they need to be with CHOC and physical therapy appointments.  You don't know how much you have helped us out, Misty!  Thank you so much for always being there for Shannon.

Thursday, January 22, 2009

The Hospital comes Home

Kelly spent a long day in the Infusion Center for chemo yesterday.  We tried to keep her a little longer to run her IV hydration for an extra hour or so since she was getting so sick.  But it just continued when we got home and through the night.  Thanks to our little nurse Shannon for taking care of Kelly last night and changing her buckets!  She is so sweet and helpful to Kelly when she is not feeling well.   Kelly's case manager from CHOC called this morning to check on her, since they were worried about her when we left last night.  Since she still couldn't keep anything down,  her doctor ordered home IV hydration.  We thought this would be nicer for her so she could stay home and not have to go back to the hospital.  But she was really upset when I told her what was going to happen.  She really looks at home as her refuge from medical procedures and treatments and the thought of the hospital coming to her was really hard for her.  I finally got her to agree to it, but it is going to take a trip to Borders where she can pick out any book she wants.  Whatever it takes!  It is actually kind of nice to think that I can bribe her with books.  Not what most 16 year old girls would want so much.

So this afternoon a home nurse came to our house and started an IV for Kelly.  She will have 12 hours of hydration for the next three nights.  Hopefully this will help her feel better for the next few days and she'll make it to school more next week. She wants to try to go to school tomorrow. We'll see in the morning.  Plus she'll still have the IV in her hand.  I can disconnect her, but the IV will be in until Sunday. She didn't want her port accessed because she can taste saline and heparin flushes in her port and that makes her sick.   She would really appreciate any notes in the comments!  This has been a hard couple days for her.

Megan is finishing finals tomorrow, which she will be very happy about.  She was also really excited to find out this week that she was cast in her high school's musical, Singing In The Rain, which will be the first two weekends in May.  She is thrilled to be able to dance in such a fun show.  Kelly will also be involved in the show as she will be working be in the crew!  This should be a fun way for her to be involved with something at their high school.  Anything that helps her feel like a normal teenager is a good thing!

Wednesday, January 14, 2009

Good News!

Kelly had her MRI today.  We went to Dr. Muhonen's office right afterward and looked at the the scans with him.  The scans look good - just like the last one.  There is no highlighting in the area where the tumor was.  He was very happy with the results.  There is a small area of enhancement, but it has always been there and Dr. Muhonen is not concerned with it.  It is possibly post op changes.   So we are very relieved tonight! Especially since she has had headaches this week, which is very unusual for her.  I think she is just fighting off a virus - she is taking a nap right now!  It was nice to see you today Erin!

Kelly was asked to attend the CHOC Gala in Newport Beach later this month as a greeter.  This is a big fundraiser for CHOC, and since it is all about the kids, they asked some patients to come and be greeters for the guests.  

Thanks for all the good thoughts and prayers for Kelly.  We appreciate it so much and the power of prayer is so evident in her.  We are so blessed.

Thursday, January 8, 2009

Happy New Year

Well, we are back home and back to our normal routines again.  If you can call our life normal! It was hard to come back to school, work, and doctor appts. and treatments after such a great vacation.  But we are moving on, and hoping for a good 2009.  Kelly did have chemo yesterday.  The good news is that she slept through most of it and didn't get sick at all.  The bad news is that ever since she got home last night she can't keep anything down, and is feeling miserable today. Hopefully she'll have a better tomorrow.  She has an MRI next Wednesday, the 14th.  We are praying for her continue to beat the odds with her clear scans. But the fact is, she is beating the odds because no one expected her to be doing as well as she is right now. It is very unusual for her type of tumor.  So it is very nerve wracking anticipating this MRI, especially since we have seen so many other kids getting bad news lately. Too many families have lost their little ones in the last few weeks. It really reminds of us of the reality of childhood cancer.

I have a few more photos from last week in Oregon.  (Was that just last week?) I am working on putting many of the pictures from our trip on a webpage. As soon as I am finished, I will post a link.   We took a beautiful drive through the Columbia River Gorge, just outside of Portland.  The first place we stopped was the View Point Inn.  The girls really wanted to stop here because the prom scene from Twilight was filmed there. Remember what a big fan of the Twilight Books Kelly is.  Megan, Emily and Jake are very interested in the books too. It was such a scenic spot with wonderful views and a really pretty restaurant. Here is Kelly along their Twilight Walk of Fame.  There are bricks with all the actors names on them.

This is the restaurant at the View Point Inn (where the prom was held for the movie,)  It was so pretty with all the Christmas decorations.  There were pictures in the lobby of the filming.

We kept driving and stopped at a few of the waterfalls along the drive.  This is part of Multnomah Falls with a  lodge in front of it.  We had lunch here.  It was just beautiful.

We brought the dogs, who became quite soggy, but they really liked playing in the snow that was still there.   The water is all mist from the waterfalls.

We wish everyone a Happy New Year and a good 2009 full of hope.