Day 10: 10 September 2015

Measuring the distance between us. Always too far.

Another 6 hours on the machine and a 3.8 million collection. Another day tomorrow and a small price. Our nurse today, ethereal and wise, shared part of her story. Her son was diagnosed with Leukemia at age 3 and spent 5 years on and off treatment for that as well as a secondary cancer. A doctor suggested "slow learner" developed into an incredibly accomplished man; aeronautical engineering, attending Stanford, creating a blood test to best match cancer treatments to patients (and more) and he was absolutely adored. Sadly, he died in an auto accident at 23. His mother is gentle and light; a painful reminder of the heaviness people carry in their hearts. I researched his obituary and being a cancer survivor wasn't even mentioned. I wonder if this will be our whole life or simply a part. I am smitten with the idea of abundance over longevity. Overflowing fullness.

Day 9: 9 September 2015

8 million. That's how many stem cells we are attempting to harvest. 6 hours on a machine that is louder than my hybrid and today's haul? 2.2 million. So we stay and try again tomorrow for another 6 hours. They are collecting his "grandfather and grandmother cells" (as his neuro-oncologist says). The strongest and wisest of the bunch are getting put on ice for their future assignment. I abhor everything about what we are doing, but the concept of his "grandparents" saving him is a bit soothing and resolute. We passed the time with a movie and internet quizzes. One was how to determine your ideal vacation destination. One of the questions was "why I want to get away". I thought for certain Louie would pick the "I've earned it option" but he didn't. He chose the "to see the world" option. He either doesn't realize or is ambivalent about the magnitude of what he's going through. He's in the trees and one moment he will see the forest.

Day 8: 8 September 2015

"Do you know where I keep my will to live? In here." - Louie, pointing to his heart.

A year ago we commenced radiation and chemotherapy and today we prepare to harvest stem cells in anticipation of 3 rounds of high dose chemo. They have to "rescue" him after each round. A heroic idea. His own cells save him, but being to the point of needing saved is an altogether despicable idea in and of itself. A fairly odd day starting with an early morning blood test at the hospital, school (he was disappointed he had only 3 classes today vs. 5, believe me, making it through 3 isn't easy but his will is sometimes stronger than his way), an afternoon of homework and minecraft and then back to the hospital to check-in. He is scheduled for a shot at midnight of a white blood cell stimulant to work in concert with the daily shots I've been giving him at home for the past several days. I'm impressed we've managed a lighthearted day despite the unknown tomorrow. We've learned to roll with it. Shuck and jive. Shuck and jive.

Day 7: 7 September 2015

"Bad day. Make it better." - Louie (asked in a tearful plea)

What started off as a rough day steadily improved into a dynamic evening; Louie was garrulous and exuberant. Labor Day one year previous, we were mentally preparing for 6 weeks of daily radiation and chemotherapy as the inaugural follow up to his surgery the prior month. They had warned us about radiation, how it may affect his IQ long term and other hideous issues. We were pouring through sheet after sheet of likely and less likely side effects. I sobbed the night before, scared that he would be monumentally different instantly. That my Louie, the one I'd known would be gone. There were alterations to his spirit. Cranky and exhausted as the weeks dragged on; a compendium of the treatments, the addition of a feeding tube nourishing him or the laboriousness of the daily appointments at two separate institutions. (I cannot fathom how we made it through those 6 weeks.) But it was Louie, even if I couldn't see it all the time and as he felt better he resurfaced. Tonight he was talking about his surgery last year, relieved we found everything when we did and amazed he had surgery 3 days after they discovered the tumor. His reflection was so sanguine and matter of fact. It's simply a memory for him. For me, it's every detail and every emotion. Maybe the color therapy above lifted his spirits; whatever it is, I wish it to last forever.

Day 6: 6 September 2015

"There is a place for everything." - Louie

A better day for certain. Lunch out, Lego and the bookstore. And while the bookstore didn't yield new results regarding reading material (books lie unread and we're re-reading Harry Potter for the 6th cycle), the trip did accrue a new puzzle for us. Peaceful, meditative and of a coral reef, a dream of Louie's to see one day. And a drop in visit from an old school chum of his upped the entertainment value. As sleep arrives, I often remain in Louie's room; reflective on the day, his proviso or catching up on messages. Tonight I thought about risk. You risk your heart when you fall in love. That notion has always been romantic for me. How can you risk your heart when loving a friend or a parent or a child? That love is unwavering and safe. When Louie spends time with friends, I'm in awe of their generosity of heart. Is allowing even a wee fraction of their soul to attach to him a risk? Knowing you may get hurt but convinced its absolutely worth it? Maybe all of this generosity of heart and soul and spirit and energy will provide him immortality in the best possible way. You can never read too much Harry Potter. :)

Day 5: 5 September 2015

All around dreadful day, top to bottom. Movies, reading, crying and one trip to DQ. You see your child somber and with your whole heart want to fix it. But it's okay to have sad days, you can't mock happiness enduringly. Oh, and we learned we are not good foster parents. And we can't blame the cat.

Day 4: 4 September 2015

A day of disparate emotions. There is a feeling I've had 4 times in my life, and one was yesterday. Traditional delivery of chemo isn't enough, so they distribute it straight to his spinal fluid. During that process they look at his fluid; clear is good. It was not clear the very first time only, in May, meaning there were tumor cells. Everything about yesterday morning was awry; late arrival, Louie was exhausted, Doctors were traveling, a shaky replacement, it was taking soooo long at the hospital and the fluid was yellow. Dammit. The feeling. This tingly, warm numbness drowning me. Okay, go from there; a fairly average day...Lunch, Lego's, etc.. His former science teacher even dropped off a monarch caterpillar for us to foster and found monarch eggs in our butterfly garden she helped orchestrate (along with his friends). And then the email that they didn't see tumor cells and aren't sure what happened and to just to be on the lookout for a fever. The apprehension that consumed me secretly all day was gone. A wicked reminder. So, in our day of extremes we spent hours before bedtime merrily brainstorming Louie's new concept that will.....well....let's just say it's an absolute unique donut experience. Now, if I could only get him to try one.

Day 3: 3 September 2015

"Yes, I know. When I'm happy, they're happy."- Louie

This was Louie's response when I asked him if he knew how many people told us everyday that when they see him at school it makes them happy. He made it there today - nearly the full day and topped it off with homework on the computer (unusual!). This is a photo of Louie sitting for his school photo. As we drove away, my husband and I debated how we would reflect upon this year. As one we hoped would be overcast by multitudes of good years? Or, as an actual good year. Deep breath. There is a Calvin & Hobbes cartoon I photographed 2 months before Louie was diagnosed. It says "That's one of the remarkable things about life. It's never so bad that it can't get worse." I'll take a lifetime of days like today. Louie was convivial, nearly jubilant. And Neal and I ate our way through Whole Foods. On the whole, today was a good day.

Day 2: 2 September 2015

"It's kind of funny when you think about it. All we did today was get up, go to school, come home, take a nap and do a puzzle."-Louie

He made a valiant attempt at school today; dressed and into the building before deciding to turn around. A reserved day at home, in withdrawal. I remind myself to use caution that this may not always be. I'm very anchored to Louie and our new arrangement. Similar to summer and how it behaves, unsuspecting that it will ever end. That's me. Thanksgiving in September dinner courtesy of a classmate of Louie's. We accept to nourish their souls as well as ours.