Chemo Day

Yesterday was chemo day for Kelly.  She is never crazy about these days since she knows she is going to end up sick.  It does help to have a nice place to go for her infusions now.  Below are some photos of CHOC's new Outpatient Infusion Center, which is right behind the oncology clinic.  There is a big common area in the middle so if the kids feel like it, they can go there and watch tv, play video games (or play with other toys there if they are younger)  and just have a chance to be social instead of being closed into a room like they used to be.  Kelly still likes to be in her own space once her chemo starts, but it is nice for me to be able to talk to other moms here, especially when Kelly has a brand new book with her and doesn't care if she has me with her all the time.  

Yesterday also went faster because our friend, Bailey and his family were there for a long chemo infusion also.  We had the last two rooms across from each other (they are open, with curtain that can close.  Here is Bailey with his two little sisters.  They are watching E.T. - so is Kelly right across from them.  Thanks for making a long day go faster, Michelle.  Next time I'll bring the muffins!

Kelly was given an extra anti-nausea medicine yesterday since she has been having a hard time with her chemo, and it really knocked her out.  This is the first time she has ever fallen asleep during chemo and I think she liked it that way.  After she fell asleep, I noticed what she had tucked in her pocket and I thought this was touching.  This is a special rosary she received while she was in Lourdes.  It is blessed and has actual Lourdes water in it.  That trip is still helping her through her journey.

She is feeling much better today, just pretty tired.  We are happy to see that she has her appetite.  Speaking of her appetite, in case you haven't heard, she is eating wheat again!  She couldn't resist trying a piece of bread on our trip to France. Bread is one of the things that the French make well.  As we were flying over to Lourdes on Air France, she tried a piece of my bread to see if it would make her sick.  Twenty minutes later, she still felt fine, so she had her own piece.  She was thrilled that she was able to eat croissants every morning at our hotel!  So she is still eating bread and tolerating it well.  She may have outgrown her intolerance to wheat, or her digestion may be affected by her chemo.  Whatever happened, she is very happy to be able to eat all things wheat again.

Kelly's next MRI is a week from today on Wednesday, June 4th.  She has an appointment right after her MRI with her neurosurgeon, Dr. Muhonen, to go over the results. Please join us in praying for clear scans.

Thanks for your love and support,

Kathy

Kelly's Kabin

We are finally unveiling Kelly's room makeover.  A wonderful group of volunteers called Room to Heal, pictured below, transformed Kelly's room into a cabin in the wintery mountains, complete with three moose.  Room to Heal redecorates kid's rooms who are seriously ill so they have a nice place to rest and heal.  They came and talked to Kelly about how she would like her room to look, and she wanted a winter, woodsy room with moose of course.  They painted her whole room with murals of snowy, woodsy mountains.  Since she has so many stuffed animals (mostly gifts since her diagnosis) they added a shelf all the way around her room near the ceiling.  Below the shelf, they added a pine cone garland with white twinkly lights.  Yes, it looks a little Christmasy and Kelly loves it that way.  She wanted to keep a Christmas tree in her room all year because she loves Christmas so much.  I've added several photos so you can see her new room.  She is thrilled with it and loves to spend time there now.

This is painted on the door to her room.

They added moose pillows, and new blankets to her bed that looks like it belongs in a cabin.

There is a moose peeking out from behind the trees right over her bed.   They wanted to make the moose realistic, but moose are actually not real pretty animals close up.  We love the way the volunteers made the moose look realistic and friendly.

Another Moose

Here are two of the volunteers hanging the white lights around the top of Kelly's room.  Notice her closet doors.  There are moose tracks and a sign that says "Moose Xing"  It looks great.

We are so thankful to the Room to Heal volunteers for transforming Kelly's room and giving her a beautiful,  peaceful place to rest.  Thanks also to our wonderful pediatrician, Dr. del Valle, for telling them about Kelly.

Check out the website www.room2heal.org     to find out more about this fantastic group of volunteers.  There are also a lot more pictures of Kelly's room under Projects - Kelly's Moose Room.

Update From Thailand

Sawadee, everyone. I was sent to Thailand on May 3 to participate in a regularly scheduled annual military exercise. As I flew in, I didn't realize that 30,000 feet below, tens of thousands of people in Burma were perishing in a cyclone. As soon as I arrived at headquarters, I was assigned to the Burma relief mission.

Burma is a very closed country and mistrustful of others. For days they refused all offers of aid and would not allow aid workers into the country. Eventualy, they began to allow a small amount of relief supplies into the country, but only as far as Rangoon airport. Foreign planes are required to unload their cargo and leave immediately. Internal distribution is done only by the Burmese government. There are reports that labels are changed on the supplies so people will think they were supplied by the Burmese government. Reports of donated goods being sold or sent to army warehouses. The worst reports say that aid is only going to communities that the government deems loyal.

Because of the exercise, there is a Navy task force carrying Marines in the vicinity. A task force like this was used to help after the tsunami a few years ago and last November after a cyclone hit Bangladesh. They were moved around the Malaysian peninsula and are ready to ferry supplies quickly to the most devastated areas, but we won't do it until we have permission from the Burmese government. Right now a French cargo ship loaded with supplies has been denied permission to dock.

I wish the "Code Pink" ladies who are protesting the Marines up in Berkley, California could see how many volunteered to go into an unfriendly country where death and disease are all around, just to deliver relief supplies to those in need. Unfortunately, none have been permitted to go. Why are we working so hard to give relief supplies to such an unwilling recipient? 1. The people really need it. 2. Much of the world thinks the US is the cause of most of what's wrong with the world and we want to change that perception. 3. Burma has been shut off from us for two generations and this may be an opportunity to open a dialog (even though we disapprove of their government).

There's a lot more, but I wanted to keep this short. I'd give you some impressions of Thailand, but I haven't seen any of it. All I've done is work and sleep. It feels like Florida in the summer. Heat, humidity, and spectacular thunder storms that mess with your satellite communications.

CHOC Glass Slipper Guild Dinner Photos

These are photos from the Dinner Kelly and I attended last weekend.  This is Dr. Muhonen on stage with Kelly.  He is talking about Kelly and CHOC and they are looking at the slides he had.

Now it is Kelly's turn to talk.  Dr. Muhonen is chuckling as Kelly is talking about the hole he made in her head.  (It is a good hole - where he resected her tumors. Twice)

After Dr. Muhonen and Kelly were done  speaking the whole ballroom gave them a standing ovation.

Kelly said she was nervous until she got on stage, and then she felt fine.  It doesn't hurt that she was with Dr. Muhonen, who is such a source of comfort to her.

Our Dancers

While Kelly and I were away in France, Megan and Shannon competed in the West Coast Dance Explosion with their Center Stage Dance Team.  Their team did very well earning one gold medal and one silver medal and placing third in each category.  Their team qualified to go to Nationals in Las Vegas in July, which no one expected them to do their first year of competition.  Unfortunately, since no one was planning on going, a few of the familes already have vacation plans for the time of competion, so it doesn't look like they will be able to compete.  Next year we'll know to allow for this possibility.  

This might actually be just as well for Megan.  She spends many hours a week dancing and is running every week for her PE class at school, and lately her ankle has really been bothering her.  We took her to the doctor yesterday to find out what was wrong, and she has a stress fracture.  Her legs take an awful lot of impact, so the doctor wants her to rest it for a few weeks to let it heal.  This is hard for someone who is so active and enjoys dance so much.  They also realized that if they just told her to take it easy, she would still try to do some dance.  So below you can see what the decision was to give her ankle a break.

Notice the lovely paper shorts they gave her to put the cast on.  She is holding them up so they don't fall off!  She should be able to get her cast off in time to still dance in their big spring dance show on June 28th.  The only good thing about giving her ankle a break is that she is thrilled she doesn't have to run the mile any more for PE this year.  

Courageous Kelly

Kelly was invited by her neurosurgeon, Dr. Muhonen, to a fundraising dinner last Saturday night.  It was put on by the Glass Slipper Guild to raise money for the CHOC Neuroscience Institute.  The dinner was held at the Balboa Bay Club in Newport Beach. After dinner, Dr. Muhonen took Kelly up on stage and told her story with slides.  Then Kelly talked about what CHOC meant to her, and how she appreciated her doctors and nurses.  She received a standing ovation.  I was very impressed with how well she did in such a large ballroom full of a lot of adults.  

Today was chemo day.   Let's just say she is glad it is over.  She is not tolerating the Irinotecan very well.  Hopefully she'll feel better tomorrow.  

We mentioned how we attended a teen oncology event a few weeks ago called It Can't Own Me at Dave and Busters.  Kelly made a video that night that has now been posted on their website (Shannon got in on it too!)  Here is the website where you can find the video.  When you get to the website, click on Videos and then look for Kelly Laude.  She is also in a few photos under Photos.  There is one of all of us (except Megan who wasn't with us that night)

www.itcantownme.org

Kevin is in Thailand the rest of the month.  They are helping the relief effort for Burma.  

Thanks for all the birthday wishes for Shannon.  She turned 11 last Thursday, the day after we came home.  

More Photos from Lourdes, France

Hey, its Kelly. I'm writing in green because there is so much vegetation in Lourdes. It's beautiful. The picture below it the grotto where Mary appeared to Bernadette in the 1800's. Bernadette was told to dig in the ground, where she found a spring. It has been said that miracles have happened by bathing in the water. While I was there, I went in the spring water. Aside the fact that the water was beyond freezing, and left me gasping for breath, it was the most amazing thing I have ever done. When I got out, I was almost completely dry, and felt nice and toasty. There were no towels too, I promise. Talk about AMAZING!!! 

 Me, and a few volunteers one day in my spare time shopping. Of course, this is the ONE day it rained.  We were actually lucky with the weather.  Since Lourdes is in the foothills of the Pyrenees, we were expecting cool, rainy weather, but it was almost always beautiful and sunny except for this morning.

Cardinal Mahoney blessing the sick in a magnificant, underground Basilica.

My friend, Diana, and I in the underground Basilica.

  A view from the top of the Rosary Basilica inside the Domaine.

                                    This is one of the  court yards in the castle we went to.  

                   Processing to the washing of the feet. This is Diana in the touristy part of town.  You 

can also see if was her day to have Carpool, the pig.

                        

  Me and my friend Sarah at the top of the castle. Amazing view huh?

  Our last group dinner. We went to a cute house in the country for dinner. Our leader Pat was(is) amazing.  I am really looking forward to getting together with our group again.

A Trip to Remember

Kelly and I just got back (Wednesday evening) from our trip to Lourdes, France.  It is almost hard to put into words the amazing experience we had.  We went with a group called the Order of Malta, which is an incredible group of people.  This annual pilgrimage is a big part of their ministry to the sick.  Kelly was so taken care of and feels very blessed to have had the privilege to travel to this beautiful, special place.  I'll try to have Kelly write about the trip tomorrow, but she just went out to the movies with Megan and some friends (which is a very good thing for her also!)  For now, I have some photos to share, and they will tell some of the story.  We'll add more this weekend. You can click on the photos to enlarge them.

The sick people that come to Lourdes are affectionately called "Malades" and are pushed and pulled in these carts, also called voitures.  Kelly thought they would be embarrassing and unnecessary before we got there, but she got used to them right away and really enjoyed getting to ride. Everyday, we would have different volunteers from our group who would push and pull her and just take care of her. It was a great way to get to know everyone - we had such a great group.  I think she wished we had one in the grocery store yesterday!

Here is Kelly on a bridge over the River Gave.  We enjoyed walking through the town.  (She did want to get out of the cart and walk too.)   One of the men who was pushing Kelly got her this beret one of the first days we were there. (Thanks Gary!)  She wore it almost all the time.

Every night, there was a candlelight procession through the Domaine.  Our group took part in it one night.  There were thousands of people, each with a candle.  It was quite a sight and very moving.  This is Kelly holding her candle.

One day we walked up to a castle  from the 1100s.  It was up on a hill and had amazing views of Lourdes and the Pyrenees Mountains.

We brought water back from the spring found by St. Bernadette.  Kelly is filling bottles at one of the faucets.

Another beautiful view from the Domaine.  Even though the town of Lourdes is touristy, once you were inside the Domaine, there seemed to be a peaceful feeling.

We took a bus into the country one day to St. Savin and went to an old stone church.  Kelly was happy to find several other young people in our group, who really enjoyed getting to know each other and spending time together.

Kelly loved this gold crown on the Rosary Basilica.  Michael and Melody, two of the volunteers from our group, pulled her up to the top to get a closer look.  And yes, she is holding a stuffed pig.  Father Janze, who was also part of our group, brought this pig named Carpool and every malade in our group had a turn to carry him around for the day (some of the guys did threaten to throw him in the river if they had to carry him, so the girls all took turns!) It just added some fun.

Sawadee!

That's "hello" in Thai.

As Kathy and Kelly went off on their pilgrimage to Lourdes, Uncle Sam was sending me to Thailand. It feels strange to have the family spread across three continents. Ironically, we're here to do an HA/DR (humanitarian assistence / disaster relief) exercise, but we may end up doing an HA/DR operation. We are ready, willing, and able if the Burmese government ever decides to allow foreign assistence in.

Kathy and Kelly should be returning from Lourdes in a few hours, and I'm as anxious as anyone to hear about their trip.

Thank you for all of your help and prayers,

Kevin

Aloha everyone.

Just got my first message from Kathy and Kelly in Lourdes, France. Kathy says they're having a great time and loving the Euorpean lifestyle. Her note was brief and didn't describe the shrine they traveled so far to visit. I'm looking forward to that as much as everyone else. She says she found a wireless connection and, hopefully, will be writing her own post before they leave Lourdes.

We cannot sufficiently describe our gratitude to all of our family, friends, neighbors, and dozens of people we never met that have helped us make it through this trial. We are extremely thankful. I want to cook you all a BBQ. I know it's not much, but BBQs are my "thing".

All the best,

Catalina Eddy