In a couple of days my family is headed to Oahu, Hawaii for a week. However, this is no ordinary trip for us. This is my son Kellen’s wish trip, granted by The Rocky Mountaineer and the Starlight Foundation. Whenever I share this news, I get a lot of questions and usually the same ones, so I’m going to do a Q&A for all of my readers.
Question 1: Does your son have a terminal illness?
Answer 1: No. Kellen has an autoimmune disease called Ulcerative Colitis. While it can be terminal if left untreated, he receives treatments and his life is not in any immediate danger.
Ulcerative Colitis (a form of Inflammatory Bowel Disease) takes place when the immune system attacks the large intestine, causing inflammation and sores. This leads to pain and bleeding, which then causes diarrhea, weight loss, anemia, fatigue, dehydration and a host of other issues. It is an invisible disease and one that many don’t wish to discuss, which leads to many people not understanding the scope of the problem. Many people with UC require hospitalization and surgery. There is no known cause or cure.
Question 2: If he isn’t terminal, how did he get a wish?
Answer 2: The Starlight Foundation offers In-Hospital and Out-of-Hospital-programs for children with serious, life threatening or life altering illnesses. We joined as a Starlight Family over two years ago by applying to be part of the Starlight Escapes program. In this program we are invited to meet other families like ours at Starlight events. Starlight receives donations of event and sport tickets, etc. and they distribute them to families so that the kids can take some time out from their health concerns.
While Kellen does qualify for a wish, we had not applied for one. I, like many others, was under the impression that wishes were reserved for children with life threatening illnesses.
We were invited by Starlight to join ten other families for a trip on the Rocky Mountaineer Train of Heroes. This was not a wish trip, but it was a once in a lifetime opportunity that we will never forget, and the icing on the cake came on the last night when the Rocky Mountaineer CEO announced that the four Starlight children in attendance that had never been granted a wish, were now being granted a wish. Kellen was one of those children.
Answer 3: Kellen’s life has been drastically altered since he became ill at nine years old. He was diagnosed at ten and hospitalized for a week while the doctors tried to put together an intervention plan for him. For three years he has been receiving biologic medications via IV in hospital once a month. He was taking oral medications as well, but experienced serious side effects that lead to removing him from those medications. He lives with joint pain, severe fatigue and nearing his treatment dates he always deals with digestive pain. He was homeschooled for half of this school year but has returned to school with a later start time to accommodate his need for rest. This wish has brought such a light to Kellen. He can’t wait to guide the rest of us on an adventure of his choosing. It is awesome to see kids who struggle get to celebrate and be the center of attention for something non-health related.
Honestly, I have days where I feel like the hand Kellen has been dealt is far too much for a child, and there are days when I feel like we have it all under control. It’s hard to accept that this is a lifetime illness that can take over his life at any time
Question 4: What did he wish for?
Answer 4: He wished to go to Hawaii and visit the Pearl Harbour Memorial, stay at Disney Aulani, visit the volcanoes and see some of the sets from the “Lost” television series.
Question 5: Did you tell him what to wish for?
Answer 5: Absolutely not. I was told that Kellen would have a wish granted before it was announced, and I was given the difficult task of getting three wishes out of him without telling him the surprise. It was not easy! I told some little white lies about having to fill out some forms about what you would wish for, and when he couldn’t come up with ideas, I made some suggestions based on things that other children have wished for, such as Disney World, a cruise (I may have been secretly wishing for this one, but I put no emphasis on it), electronics, etc. His 3 wishes were Hawaii, Disney World and a Playstation 3. We bought him a Playstation 3 and we visit Disney World often, so I’m grateful that Starlight granted him the wish that we couldn’t.
Question 6: Why does he want to see the Pearl Harbour Memorial?
Answer 6: Kellen loves history and learning, and one of his passions is World War II. He has done nothing but talk about Pearl Harbour for the past week! He doesn’t know it, but we are going to book a tour on the island that will take us into an actual bunker from the war. I think he will be over the moon!
Question 7: Is the entire family going?
Answer 7: Yes, all four of my children will be going, along with my husband and myself.
I will be sharing the trip as much as I can on Instagram, and after the trip I will be sharing on my blog too. I hope you will follow along and see the amazing work that the Starlight Foundation does. Your donations to the Starlight Foundation can help more children who are living with illness.
Kellen walks in the Gutsy Walk every year. It is a fundraiser to find a cure for Crohn’s and Ulcerative Colitis. You can donate here: Support Kellen in finding a cure.