Pancakes, Beads, and Precious Time

October is a rough, rough month for our family. Once upon a time, it simply meant Jeremy would spend the better part of the month telling us what he wanted for his birthday, which is on the 30th. These days it's a little different--make that a lot different. October is the last month we had our sweet girl on this earth. October 2016 changed us forever. It has now been almost one year since Paige left us, yet sometimes it feels like yesterday. Today I find myself thinking about those last days we had with her. Today I find myself thinking about pancakes, beads, and precious, precious time.

Pancakes. As Paige's health was rapidly declining, so was her appetite. There were really no foods that sounded good to her--except pancakes. Chocolate chocolate chip pancakes, to be exact. Chocolate pancakes loaded with chocolate chips. And whipped cream. So much whipped cream--and I'm not talking about the little dollop they put on the stack at the restaurant. I'm talking a can of Reddi-Wip. Paige was very particular about it--it had to be the "real stuff," not the "low fat junk Mom likes." Each pancake had to be cut into bites that would then be 'decorated' with their own helpings of whipped cream. I'm not sure how many cans we went through, but I do know it became a 'thing' for us to make trips back and forth to the family room refrigerator for Paige's Reddi-Wip.  Even on those yucky days, that sass was still front and center--but that was fine with me. I loved seeing her spunk re-emerge, even though the times were getting fewer and farther between. I loved seeing her cover those pancake bites with whipped cream and thoroughly enjoy food she actually felt like eating. I loved doing what we could to make her happy. Whatever that girl wanted, we would find a way to make it happen. It just so happened that those pancakes hit the spot every single time--24 of those last 28 days we were there. That's a lot of pancakes.

Beads. Beads of Courage is a national arts-in-medicine program that helps children who are coping with a serious illness tell their stories and have an amazing visual representation of those journeys.  TCH was just beginning the Beads of Courage program last year after Paige's last relapse. In fact, they were in the process of training staff and hadn't yet received all of the different types of beads they planned on giving out. Every bead is part of a child's story. Every. Single. One. There's one for every dose of chemotherapy, whether by pill or infusion. One for every poke, including IVs, blood draws, and accessing the port. One for every overnight hospital stay, every biopsy, every transfusion, every scan--everything. There are even special "EnCOURAGEment" beads for bigger milestones as well as special accomplishments related to the journey. It's truly an amazing program.

We were surprised and honored when some very special people approached us about awarding Paige with all the beads she had earned up to that point. The problem was, I hadn't kept up with all of that--not in one specific place, anyway. There was so much the girl had experienced through 2 1/2 years of diagnosis, treatment, relapse, transplant, and yet another relapse. Just trying to estimate the number of times she'd had some form of chemo was in itself a daunting task (almost 600), and we wanted to make sure Paige got every single bead she'd earned. Boyce and I spent the better part of a weekend going through all of the treatment 'road maps' and calendars and clinic paperwork we had in our possession. We knew there were things we'd overlooked and were beyond grateful when one of our incredible inpatient doctors spent a Sunday afternoon combing through anything and everything she could to help complete our counts of Paige's many, many courageous moments over the last few years. The result: over 70 feet of beads--beads representing hope, perseverance, and bravery in the face of unfathomable adversity. Close to (if not slightly more than) 2,000 beads telling the story of one amazing young lady. 2,000 beads. That's a lot of beads--and a lot of courage.

Precious Time. From that final hospital admission on September 26th, we knew time with Paige was getting short. Much too short. Some days were good. There was laughter and sass and endless episodes of Tim Allen shows. Some days were really bad. On those days all we could do was hold that girl close and tell her how very much we loved her. I would have done that for the rest of my days if it meant Paige would one day regain her health. This was my baby girl, after all. A giant piece of my heart and my world.  Every day we were given with that girl was precious. Every day. Every hour. Every moment. Paige Madison Lejeune blessed my life for 16 years, 2 months, and 13 days. I will always be grateful for every precious second I had with the bravest person I have ever known. 

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Paige taught me more through her cancer battles than she ever fully realized. I think she did the same for a whole lot of people. What a special, special young lady. I am forever proud to be her mom.

Be joyful in hope, patient in affliction, faithful in prayer.   Romans 12:12