The great thing about having a child with a "belly tube" (or a gastrostomy tube) is that we had complete control over Ty's diet. I was able to make him shakes that were jam-packed with vegetables, proteins, oils and amino acids. Ty had oral mobility issues, not to mention the outrageous effect chemotherapy had on his taste and his appetite, so most of the time he ate very, very little by mouth. I don't know what we would have done for his nutrition, not to mention administering his meds, if he didn't have this miraculous device.
That being said, he did eat by mouth on his terms. For example, Ty went through a phase where he loved bacon - I literally kept a box of pre-cooked Oscar Meyer bacon strips in my PURSE for three or four weeks so I could pass him back a strip during our long car rides. After a month of bacon overload, he never ate it again. Then there was the "toast" phase where we went through almost a loaf of sliced bread DAILY because he was ravenous for buttered toast (this was during a spell on Dexamethasone - an evil little steroid from hell). And strawberries. One of the only things he would eat straight into his last days. There was only one ever-present "favorite food" that followed Ty throughout his entire journey. The BLUE LOLLIPOP :)
I don't think it was so much the taste of blue raspberry that had him so hooked, but it was the incredible fun he had showing everyone his blue tongue, and lips. Sometimes even his teeth turned blue! In fact, once or twice his blue lips alarmed nurses to "Call Respiratory" because they feared he was having trouble breathing. Lou and I found that amusing, but we could understand their concern when he was otherwise resting so peacefully in his hospital bed. When you're stuck in a situation like we were, we chose to laugh instead of cry as much as we possibly could, and Ty's blue lollipops certainly inspired hundreds of smiles during our most difficult days.
I was recently surprised by a letter from a young girl that I received in February. Riley seemed to understand this better than most, and we hadn't even met yet. She has decided to honor Ty and the TLC Foundation as part of her Mitzvah project, and when I read her letter, I had tears in my eyes. It was one of my proudest moments.
Hi, my name is Riley. I'm 12 years old and my Bat Mitzvah is this October. Recently I donated my Hanukkah money to The TLC Foundation. I have followed your family's story for over 3 years.
When a girl is Bat Mitzvahed she has to complete a mitzvah project which is a form of community service. For my Mitzvah project I would like to help raise awareness about pediatric cancer. These are the goals I have for my mitzvah project:
- Tell 1,000 people about Ty’s story by October 12, 2014
- Raise $1,000 for the TLC Foundation by hosting events to raise money and awareness for pediatric cancer.
- Participate in at least 4 events to raise money and awareness for pediatric cancer.
To learn more about The TLC Foundation and how to get kids involved
If possible I would like to discuss my goals with you or someone from the foundation. Thank you in advance for your time.
This incredible introductory letter has since evolved into an amazing campaign called The Blue Lollipop Project. Riley purchased thousands of blue lollipops and she is using them as a vehicle to spread awareness for childhood cancer while sharing the sponsored lollipops with children at various local hospitals. In fact, she will be heading down to Memorial Sloan Kettering this week and contributing to the very same Friday Night Candy Cart that Ty so adored. It was one of the few hospital activities that was guaranteed to make him happy. The Candy Cart every Friday night, and Bingo every Tuesday. It didn't take much to make Ty smile despite everything.
Princess Warrior Brynlee was one of the first recipients to enjoy the treats, and we couldn't be happier to see her showing off her blue tongue with pride :) Thank you, Riley. Kids amaze me every day.