Sunday, June 29, 2008

Dance Saturday

Wow, last night was fantabulous!!!! I went to the Prom at CHOC with my friend Kelly, and we met up with Katie and Daniel. It was oriental themed. It was decorated so much,  it was hard to recognize a place I go to every week.  We danced, ate, and played black jack. It was super fun. The four of us probably looked like idiots dancing alone to the Chicken Dance. But it was way fun. I cant wait until next year.  After the prom, Kelly and I went to the cast party for my sisters' dance show.  

Megan in center

Shannon on the far end.  She is usually the smallest in her classes.

Megan and Shannon had two very good dance shows yesterday also.  We have more photos that we will post sometime this week.  The girls did very well, and it is so nice to see their efforts of the year on stage. (Even if I am watching it from the wings!)

After so much time and effort getting this show together, we are ready for a vacation!  We are leaving for Florida in the morning and we'll be gone until the 14th of July.  We are visiting my sister, Jenny, there and my other sister, Tracy from Oregon will also be there, so it will be fun to see everyone at once.  The girls are looking forward to spending time with their cousins.  I am taking my laptop, so we be updating from there.  Kelly of course, is looking forward to two weeks with no doctor appts, labs, or treatments.  It is a break that will be good for her.

Wednesday, June 25, 2008

Chemo Day Distractions

Kelly had chemo today and she doesn't feel so good right now, but she actually did better during the day than usual.  We went back to running the Avastin first, and that lets her feel good for a little while.  Long enough to have some fun today! Normally she likes to stay in her own little private area, but today, she came out in the common area for some fun distractions.  I think she like keeping her mind occupied.  She did a puzzle (as you can see above- notice the bucket on her IV pole.  She is always prepared.)  Then she even tried Guitar Hero - see the photos below.  Bailey came in for chemo today too and joined her with another guitar.  It was nice to see her have a little bit of fun there, since it usually isn't a place she looks forward to coming.
Kelly with Dr. Torno, one of her oncologists.

Kelly and Bailey playing Guitar Hero 
One last helpful distraction today was Taffy, one of the therapy dogs.  
 There's that bucket again. 

One big event Kelly has coming up this weekend is the CHOC Prom for Oncology patients between 15 and 18 years old.  They hold this event every year and Kelly is looking forward to going Saturday.  One of the local bridal shops donated gowns for the girls, so Kelly got to pick one out and bring it home.  She had fun trying on dresses and found one that fit her perfectly and looks great on her.  We'll post pictures this weekend.

It is so nice that school is over and summer is here.  The girls are happy not to be getting up early every morning and having some more time to visit with their friends.  
We have been very busy getting ready for Megan and Shannon's annual dance show, which is also this Saturday.  There have been a lot of extra rehearsals and I have been helping with costumes and getting everything organized.  I'll be backstage at the show getting the kids on and off stage.  Many of you know I used to work at the dance studio until Kelly was diagnosed.  I have made taking care of her my priority this year,  and have appreciated all the time we have been able to spend together.  Even though it has been very busy, it has fun being involved in helping out again and doing something "normal."  It also gives me some more time with Megan and Shannon while Kevin has been working at home some of the time so he can stay home with Kelly while I am gone.  Except for chemo days, she is feeling good lately. 

Thanks to everyone who helped Bailey by writing to Paula Deen's show.  They have contacted Bailey's family, and while he won't get to be on her show, it sounds like he will get to meet her.  He had scans done today and we are praying for good results for him!

Wednesday, June 11, 2008

Special Request

Bailey is a friend of ours that we met at CHOC.  He is also an oncology patient and has been on chemo for over two years.  His family is finally taking a break to take a cross country road trip this summer.   One of Bailey's biggest wishes is to meet Paula Dean, from the Food Network.  He would really like to be on her show.  So one of their stops will be Savannah, Georgia, where her show is taped.  Take a look at this video his mom made that Bailey would like Paula to see.

His family has learned that you have to be 18 years old to be on the show. Bailey has been given a 10% chance of survival, so his family is anxious for him to meet her this summer. They are hoping that if the show hears from enough people, it may have an impact on them to consider Bailey. They would appreciate anyone who could forward this video to her, email her, or write a letter. I'm working on finding an address - I'll post one as soon as I can find it. If anyone has any tips for contacting the Paula Dean Show, let me know! Here is one website that has some information:    If you would like to learn more about Bailey, he also has a website.    Then go to the carepage named SuperBay. You may have to sign in first, but it is easy. There is an About Me section that gives his background. His mom has a lot of pictures and videos on his carepage.  You won't be dissapointed, he is quite entertaining.

Thanks for your support for Bailey.

Kelly and I spent the day at the infusion center for her chemo. They changed the order of the drugs they gave her, so she felt sick longer today. This is the way the research shows the drugs work best, but I'm not convinced it is best for Kelly. It seemed to be working the old way just fine, according to her MRIs. I'll talk to her tomorrow about how she feels about it. She has been snuggled up in her bed since dinner. She did manage to have a few bites to eat.  These days really take a lot out of her.  I know not to even try to talk to her tonight.  She just has to rest quietly and she'll start talking tomorrow again when she gets some energy again.

Megan and Shannon have one more week of school. We are ready for summer!  It is exciting to have fun plans for this summer, after the summer we had last year.  Everything started happening as soon as school was over last year with Kelly.  Megan and Shannon are also very busy getting ready for their dance show coming up. Megan is doing better and better with dance and her ankle is healing.

Just added:  website for Paula's restaurant in Savannah (there is a place to leave a message under contact us)

Also - click on comments (below)  Henry just posted two addresses for her in his second comment.  Thanks Henry.

Paula has been on QVC a lot, and here is an email address for the host she is always with, David Venable.   It is a long shot, but if we contact everyone around her, maybe it will help! 

Wednesday, June 4, 2008

Good News!

Kelly had her MRI today and it went very well.  We went to Dr. Muhonen's office right afterward and he was very pleased with the results.  Her scans were all clear! I would post a picture, but it looks just like her last MRI.  There was a very small spot of enhancement 8 weeks ago, and that isn't even there anymore.  So it is a great night at our house.  It is such a relief to have an MRI over and have good results.

Next week Kelly has labs on Tuesday and chemo on Wednesday.  At least we know the chemo is doing its job!

Megan's good news is that her cast came off yesterday and she is starting to use her ankle again.  She has to ease back into dance slowly, but she is doing dance classes again ( as much as she can) and should be able to participate in our dance show June 28th.

Thanks for all your prayers for Kelly.  They are definitely working!

Monday, June 2, 2008

Celebrating Courageous Kids

Yesterday we attending an event at Newport Dunes in Newport Beach for the CHOC oncology patients and their families.  It was a beautiful day on the water and Kelly and Shannon had a lot of fun.  (Megan had a confirmation retreat at our church.)  It was Luau themed with bands, hula dancers, crafts and games for the kids.  Since it was Hawaiian themed, naturally lunch was catered by Panda Express, a chinese restaurant.  It was good though.  

Kelly was interviewed by our local newspaper, The Orange County Register.  They talked to Kevin and I also, as you'll notice when you read the article. (Yes, Kevin just got home this last weekend!)
Here is a link to the article if you want to read it.  Also, click on More Photos to see photos of Kelly and us.    

Kelly has a doctor appt. and labs at the clinic tomorrow.  We will leave her port accessed so they can use it for the contrast for her MRI on Wednesday.  I will post results Wednesday evening when we get home.  Thanks for all the prayers and good wishes for Kelly.

Sadly, we say goodbye to one of our special oncology nurses at the clinic.  We hope to see you again soon, Trina!  We will miss you more than we can say.