Camp Ronald McDonald

Our house is so quiet.  I am not used to being here without anyone.  Even during the school year, Kelly is always here and I haven't been away from her since she was diagnosed a year ago. And Kevin is back in Hawaii.  I was a little worried about it and yesterday morning as we were loading the car, I thought, Why did I sign them up for this???   But we arrived at the Ronald McDonald House in Orange where the bus was meeting them to take them up to camp and met other campers and the wonderful counselors, they were already at ease and looking forward to the fun week ahead.  I drove home happy that they were going to have such a great week in the mountains.  And I am looking forward to going out to dinner and a movie with friends tonight!

If anyone is interested, there is a website for the camp they are at and they are posting photos thoughout the week.  They already have photos up of the cabin groups.  Shannon is in cabin 4 and Megan and Kelly are both in cabin 12.  Follow the link below to the website, click enter, then on the Home page, click the camera where it says Find Your Camper.  The current session will be at the top center of the photo page.  

Link to  Camp Website: www.campronaldmcdonald.org

If you haven't read Kelly's post from yesterday, it is just below.

Gooseberries and Burrito Bliss

   Hello! I assume that you are wondering why I have such an interesting title. Well, I walked in for chemo on Wednesday when Christy ( from the clinic ) walks in holding the strangest looking berries I have ever seen. They were about the size of a grape, green, and those weird stripes like a watermelon. They were GOOSEBERRIES!!! And let me tell you, if you have never tried them before, they are the most delicious berries EVER!!! I had, like, a bajillion. 

   Moving on, I didn't play guitar hero this time, ( because Bailey wasn't there, why else? ♥) so I painted. I painted what a good day, and a bad day looked like. They are going to be on display next spring with other painting from oncology kids.  Then, just for fun, I painted my initials into styrofoam plates. By the end of chemo, I HADN'T THROWN UP ONCE!!!!! It was miraculous I tell you! I think it was this magic pill called Emend that they added to my anti nausea meds before chemo.  So afterward, I had a burrito and a large Dr. Pepper. Delish.

   I have felt nausous since, but I eat, and it goes away. Woot Woot! I am fine now, which is good because I am going to camp today!!!! I can't wait. Well, I gotta go. Breakfast is a callin'. Oh yeah!!! Shout out to Katie, as soon as I get back, I will call you asap.

     Adios!!!

       Kelly   

  

P.S.   Gooseberries are disgusting. They are yucky, gross, BLECH!!! I only had one. You are welcome  to try them though. EEWW. Bon appetite!

  

More Florida Photos

 We arrived home from Florida last night.  I just wanted to share some more photos from our trip.  This is Shannon on the sand bar we went to on Anna Maria Island.  She is looking for shells and sand dollars.

Sunset over the Gulf of Mexico, west coast of Florida

  We had a wonderful two weeks visiting with my sisters and their families that we don't get to see often enough.  We spent a fews days at Anna Maria Island before we came home, thanks to Tom's mom letting us use her condos there.  Thanks so much, Marilyn!  We enjoyed spending time there and being so close to the wonderful beach on the Gulf of Mexico.  The sand was white and felt like powder, and the girls were thrilled that they could actually find shells there.  We took a boat ride (photo above) to a sand bar,where we got out of the boat and found lots of sand dollars in the shallow, clear water.

Shannon and her cousin, Kylie.  They had a blast playing in the sand and water together.

Playing in the soft, white sand was a favorite thing for Shannon.  This sand never seemed to get hot the way it does here.  The water in the Gulf was nice and warm, for those of us used to the cold Pacific Ocean.  We spent hours in the water.

This bird would come almost all the way up to our sliding back door at the condo.  He was looking for a snack.   He let the kids get pretty close to him.  This is taken from the back door of the condo.

One of the nice things about this vacation for Kelly was not having to think about doctor appts. and chemo treatments.  Unfortunately, we are back home and back to real life.  She had labs today and has chemo tomorrow morning at the infusion center.  It was a nice three weeks off, which is the longest she has ever gone between chemo treatments.  

Kevin is also leaving again tomorrow morning for another two months in Hawaii with Marine Forces Pacific. We will miss him.  We were getting used to having him around.

Kelly, Megan and Shannon leave Sunday for Camp Ronald McDonald in our local mountains.  It is for Oncology patients and their siblings.  They are looking forward to a week of fun.  Kelly has met quite a few kids that are also cancer patients and have situations similar to hers.  But Megan and Shannon don't know too many friends that are dealing with sisters having cancer.  I hope this will be good for them to be with other kids who understand what they are dealing with.  When a child has cancer, it definitely affects the entire family, including the siblings.

Florida Fun

Kelly and Shannon with their cousins Kylie and Emily.  This is in France at Epcot in DisneyWorld.  Yesterday we went to Animal Kingdom and Epcot.  We squeezed in as much Disney as we could into one day.  Notice Shannon and Kylie have matching outfits.  We went shopping one day and those two got a couple matching outfits, which they still like to do.  Kylie is only 7 months younger than Shannon. 

We have been having a fun week in Florida so far.  We have spent a lot of time at my sister's house since she has a pool, and the kids have also been playing on a new slip and slide as you can see.  

Shannon on the slip and slide.  Notice the purple bracelet she is wearing.  

It says "Cancer Sucks."  Thanks Amy! That is one of the ones you sent us.

Here are most of the kids in the pool.  Kelly, Ryan, Kylie, Shanon, Megan and Emily.  The kids really enjoy being with their cousins.

The Fourth of July was a lot of fun, especially since we are used to living in dry California where it is illegal to set off our own fireworks.  We walked down to the dock on the lake, where we saw a lot of different fireworks displays around the shore, (and an alligator!) then we came back to Jenny and Bob's house and set off a bunch that we had bought that day.  The kids had a blast setting off fireworks and watching the dads who also had a blast setting off fireworks.

Megan and Kelly (and their cousins) learned something new last week - how to play poker.  Uncle Bob taught them all to play poker and we had a hard time convincing them to go to bed several nights when they were playing cards.

We are getting ready to leave to head to Anna Maria Island off the west coast of Florida.  We will stay there the rest of the week.  Tom's (Tracy's husband) mom owns two condos there and we are looking forward to spending some time at the beach.  

As many of you have noticed, I can't send out my emails like I usually do when I update.  That email list is on my computer at home.  Hopefully, many people have noticed that we are still updating while we are gone,  and happily it is all fun news.  It is so nice not to be just posting medical updates.  We almost feel like everything is normal right now.  More pictures will be posted soon!

Vacation!

We are in Florida!  So far, it has been so nice relaxing at my sister Jenny's house near Orlando.  My sister, Tracy, and her family are also here from Oregon.  The cousins are all enjoying being together again.  We had a great day relaxing by and in her pool.  Tomorrow we are planning on going to Hollywood Studios at Disney.  It helps that Jenny's husband works for DisneyWorld here.  We'll be taking photos and I'll post them later this week.

We did put some photos from Megan and Shannon's Dance Show on a new website I just started.  I hope to keep updating it with photos.   Here is a link if you want to see some more dance photos.  There are also photos on that website from our trip to France.

http://web.mac.com/kathylaude/LaudePhotos/Dance_Show.html

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.  

~Kelly

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.

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!

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:  http://www.pauladeen.com/tv    If you would like to learn more about Bailey, he also has a website. www.carepages.com    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)    http://www.ladyandsons.com/

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!

d_venable@qvc.com 

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!