On May 4th, 2012, Lilee-Jean had an MRI that determined our next direction. We had hoped the tumor was gone, or that it had pulled away from the brain tissue, but unfortunately we only had a 10% shrinkage, and it remained tight to the brain. We weren’t sure what this meant at the time, we were just happy it was smaller.
A few days later, as LJ was admitted for C-Diff, we met with Dr.Jeff and Naomi (our oncologist and nurse clinician) to talk about our options, or in this case, our lack of options.
If I’m being honest, even though it wasn’t worst case scenario, it was a conversation that broke my heart. The possible options were more chemo, surgery, or radiation. We knew the current, hard hitting chemo was drawing to the end of its effectiveness, and that it would have to be a new cocktail of meds. and with new meds comes new possible side effects. We knew that surgery would be extremely dangerous and could ultimately end with LJ being severely disabled, and we knew that radiation at such a young age could do the same. So as we sat there, while LJ is stuck in isolation, while she is fighting this super bug, we were told that while all options were considered, there was really only one that was realistic.
LJ was to start a maintenance type chemo, low doses once a month, to hopefully prevent the tumor from growing. They were going to review the drugs she has had, and incorporate some new ones to find the most effective combination. Their goal was to get her to the age of 3, so she can be eligible for radiation.
I think all the air was sucked out of the room in that moment, “we hope to get her to 3″ for treatment that could actually destroy this thing. I don’t think it fully sank in until later that night, on one of those ridiculously uncomfortable cots. Hopefully getting her to 3. I will never, ever get use to hearing words that take time off my daughters life.
Those words have lingered from that day on. They were there when she started saying “I Yub You SO MUCH,” they were there when she started standing on her own. They were there as she walked across the living room for the first time. Hopefully get her to 3, is there every night when i close my eyes, and unwelcomely greets me every morning when i wake up. its a phrase i have yet to be able to move past. its bleak, and unwelcome in my heart, and yet there it is.
These words were never more prominent then they were on June 23rd when, just shy of her 4th birthday, Maddison Rose earned her wings. We had met Maddison and her Mommy, Hannah in the hospital when LJ was first diagnosed. we were brought together in the dark, both looking for some light. Maddison’s fight with cancer was long, and bravely fought, and her memory is cherished like gold to everyone who had the blessing of being a part of her life.
As I sat through the most beautiful and heart breaking celebration of life, of a tenacious, vibrant and loving 3 year old girl, those words plagued my mind.
Its been an incredible blessing, feeling like a “normal mom” again, and even with those lingering words, my heart is beyond full with how incredible being LJ’s mommy is.
Lilee-Jean will have an MRI at the beginning of September so we can see how this new chemo is effecting the tumor. We are hoping for no growth, but my heart aches for so much more. Everything that has happened, cancer related and non, are all over shadowed by the light Lilee shines on me, on everyone who loves her and whom she loves.
“Perhaps all the dragons in our lives are princesses who are only waiting to see us act, just once, with beauty and courage. Perhaps everything that frightens us is, in its deepest essence, something helpless that wants our love.” ― Rainer Maria Rilke
LJ is proof that anything can be beautiful. That everything is purposeful, and that with courage and love, there is NOTHING to fear.
For you, my girl, I have courage. From you, my girl, I have strength.
-Chelsey Jean xo