It’s A Party!

We had a great time at the Children’s Hospital of Los Angeles’ holiday party for rheumatology patients yesterday.

Technically, we were there in an “official” capacity, since I was doing a book signing as part of the Juvenile Arthritis Association’s participation and sponsorship of the event. The JAA put together fabulous swag bags for every family in attendance, and Living With Juvenile Arthritis: A Parent’s Guide was one of the gifts that was included!

We arrived early as volunteers to help with the set up, and my boys were troopers, helping out with everything that was asked of them. (Yes, that is a shameless brag for my boys- a few volunteers had called in sick with the flu, and my boys filled in doing whatever they could, from setting up tables, to removing boxes and filling goodie bags. I have GOOD kids!!!)

In about an hour, families started to arrive. We sat at the JAA table, but also had a chance to visit with some of the other sponsors including the Arthritis Foundation, CoachArt, Disney VoluntEARS, Lupus LA, and TNH Specialty Pharmacy, all of whom had done something extra special for the families at the event.

After everyone had arrived and had a chance to socialize, we moved into breakout groups that are a regular part of the rheumatology support program at Children’s Hospital of LA. This is an AMAZING program that I wished more hospitals would adopt. Parents were divided into English-speaking and Spanish- speaking, while the children were divided into groups by age.  Each group was facilitated by a hospital social worker to help keep things positive and to provide direction. The amount of wisdom shared from parent to parent was incredible. Of course, there is no substitute for the support received from other parents that have “been there, done that,” and don’t judge. I really wish we had something like this in our area!

Maybe soon…

WIth first hand knowledge of this program, that is exactly what the JAA hopes to do. In fact, it is one of their C.A.R.E initiatives, included in the expansion of the CORE program at Children’s LA (that provides support services in addition to all the other great initiative’s in that program.) As a mom who has been through it, I know how valuable a support system can be. Since nothing like this existed for us, I sought out advice and support through Facebook groups (which has been great!) but nothing can replace face-to-face personal interactions. Hopefully we will see programs like this spread nationwide sooner rather than later!

After the breakout sessions we all headed into the banquet room, for general presentations. The kids showed off their craft projects and said “thanks” to all the CHLA staff.

IMG_6546

The teen group saying “thank you”

Disney Voluntears presented a well-deserved grant to the JAA, and then we were treated to a children’s book reading by Phill Lewis (Mr. Moseby from the Disney Channel’s Suite Life WIth Zach and Cody)

"Mr. Moseby" after the reading (with my boys!)

“Mr. Moseby” after the reading (with my boys!)

Finally, we  listened to a very moving speech by actress and director Sharon Stone. We were surprised to find out that she suffers from RA, and her sister Kelly was currently hospitalized for complications with Lupus. A number of other family members also suffered from autoimmune disease, so she had incredible insight. Her message was very touching, and she had special words and thoughts for each of us in the room, specifically addressing the struggles of the parents, the bravery and exhaustion of the “sick” children, and the unique challenges faced by the “well” siblings. When she finished, let me just say there only a few dry eyes in the room.

Sharon Stone

Sharon Stone

That changed pretty quickly  to squeals of delight and smiles when  everyone went outside after the program conclusion, and saw this:

Presents!

Presents!

 

Thanks to a generous donation from the Stone family, facilitated through Lupus LA, every child had multiple gifts, specifically for their age, gender and interests. So many gifts that we need to buy another suitcase today to get them all home!(no, I’m not kidding.) To say the kids were thrilled would be an understatement. Even my own boys were excited and surprised at how awesome the gifts that were chosen for them fit their personalities. We are going home with gear from Ed Hardy, basketball hoops, board games, and throwback baseball caps, just to name a few. The amazing thing is that ALL the kids were ripping through the wrapping paper, exclaiming the same things. It was so fun to watch!

We were treated to lunch by TOGOs  and Baskin Robbins with more time to socialize. Evan was in for a great surprise when he found one of his great friends from the JA conference this summer  was there with his family! They hammed it up in the THN pharmacy Photo Booth (more fun activities!) while I had a chance to catch up with his mom.

To sum it up, it was a GREAT party. I was honored to be able to sign books for families, and connect with so many of them on a personal level. We were grateful to be included in all the same activities enjoyed by the CHLA families, and were proud to help with the event in the ways that we could. I want to give a special thanks to all the sponsors, and especially to CHLA for all they do for their rheumatic patients as well as the JAA for including us!

It was a perfect way to wrap up our trip to LA- community service, connecting with other families, celebrity sightings and a party with gifts? Could we ask for anything more?

Does your hospital have any support groups or parties for pediatric rheum patients to connect?  I would love to hear about it!

 

 

 

Related posts:

Comments:

  1. I NEEEEED to talk to my hospital about this. This would be such a wonderful thing to do!!
    Ashley recently posted…Going back to the start….My Profile

    • It really is a wonderful program, and the support group a CHLA is for ALL of Southern California pediatric rheumatology patients and their families, not just patients of that hospital! The support is amazing!

Leave a Comment: