Cancer Families R.O.C.K. weekend

We just found out our daughter has cancer, whatre we going to do?

We’re going to Disney World!

Its ok to laugh, that was meant to be funny! I know sometimes people think our humor can be a bit irreverent in light of the seriousness of all thats happening and one thing we really felt this weekend was that laughter really is a great healer. It relieves our stress, it helps our kids to see us smiling and happy and if we lose our ability to laugh, cancer has taken something yet another thing from us. We refuse to let it.

We left for the American Cancer Society sponsored Cancer Families R.O.C.K.(which stands for Reaching Out to Cancer Kids) program this past Friday. We stayed at the Contemporary Resort, gorgeous!, and had a fantastic, emotional and worthwhile time.

We met families whose lives were being touched in many of the same ways ours are, who are dealing with the same emotions and we shared stories, tips and support. We went to educational classes based on our childs diagnosis. This event was for families all over Florida with children who have a form of cancer, so we saw kids with Leukemia, Lymphoma, brain tumors, eye tumors, soft tissue cancers, it was awful and amazing. Some of these kids looked tired and treatment-weary, some of them looked healthy and vibrant, all looked happy to be with other kids and in an environment where they were free to just be themselves. The families all shared a sense of shell-shocked relief.

This is Kate, a 2 year old who has a brain tumor. She, Adelaine and Peyton had a wonderful time together.

Peter and I both heard a lot of stories of diagnosis, treatment and prognosis. While it is fantastic to receive the amount of loving encouragement and support we get from those around us, it was a different experience to be in a group with people who understood the terminology, who got the difficulties first hand, who werent silently horrified at the thought this could be my child because it already WAS their child. I know I do this, I dont know about Pete, sometimes I dont want to tell people how Peytons doing, because I feel like maybe they dont really want to know. Its hard to hear, it brings home a terrible fear in people that it could happen to them too. This weekend was about being able to be totally free about our fears, angers, frustrations, guilt, weaknesses, strengths, hopes, wishes and dreams, knowing that everyone in the room had felt every same emotion at one point or another.

We met some wonderful families, both close to us and across the state, who we are planning to stay in touch with and continue to give to and receive support from. Our kids had the most amazing time, Nathaniel and Rachael just got to let lose and play and they had sooooo much fun. Peyton met friends her age, with the same diagnosis and as families were able to really bond and I feel like we walked away from the weekend with some new friends who are going to be a wonderful presence in our lives.

This is Marissa, a 5 year old from Jacksonville who has brain tumors. She and Rachael became fast friends.

I shed tears so many times this weekend. Some were of thankfulness to see Peyton playing, just running around with no concerns or fears just laughing and giggling with her new friends. Many tears were shed as I listened to the stories of other families who were struggling to cope with their own every day issues. Tears came easily and frequently, but they were healing and therapeutic and I wasnt embarrassed to cry or ashamed of my need to. When we needed to, we just shared tissue boxes and held hands and felt the acceptance of each other person there.

Our hotel room had the most fantastic view of the Magic Kingdom, the girls were so excited because you could see Cinderellas Castle from our balcony. Nathaniel was equally thrilled to see that Space Mountain was there. Our day at the park was sweltering hot, overcrowded due to the holiday weekend and utterly wonderful. For Rachael and Peyton it was like their first visit because neither remembered their first time. Its just so much fun to watch their eyes get big and their mouths drop open when they see Goofy or Mickey or the Castle up close for the first time. We spent time with our new friends at the park and just let the kids play, we werent worried about getting to one ride or the other, just spent the day leisurely.

We are so thankful to the American Cancer Society for providing this weekend. Its just for families with kids who have cancer that is newly diagnosed, so we were all families that needed each other and this experience. We want to thank our neighbors Greg and Theresa who made sure our dog got fed and watered in our absence, as well as put up a swing set in our back yard. We could not have gotten better neighbors and friends if wed custom picked them, they are wonderful people and we are lucky to have them. Were always thankful to Sharon, Peters mother, who showed up at the door at 8:30 pm when we got home from Disney tired and sore and stinky, with a hot home cooked dinner in her hands. No, shes not for sale or rent, were keeping her!

Adelaine (I know I probably misspelled that) is the little blond sweetheart in the pictures with Peyton. Shes 2 ½ and was diagnosed with Leukemia in July also, just two weeks before we were. Her family lives in St. Pete and we are looking forward to building a great friendship with them. Adelaines mother Angela told me at one point that we would probably be in the hospital in a week or two with some infection. I agreed while watching our daughters roll around on the floor of the play area in complete abandon. She asked me if I thought Disney was worth it. I thought that Disney wasnt worth it, but the weekend as a whole, the healing time and chance to experience being with others who are just like us, that was worth it.

——Anissa

ps…We posted more pictures from our weekend in the gallery to share with everyone.