I was really hoping that my next official update would have been a more definitive one. But in our treatment’s true fashion, we are once again at (what seems like) a stand still.
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
Have you every talked to a jennifer montgomery lay…Her daughter was diagnosed at a 7 and was given like 3 weeks.Jenny will never give up checking on different chemo and types and even found some from italy…Logan just tuned 14..you really should talk to her as i am sure you will find with jenny if there is a will there is a way…god bless you and lily
Chelsey, I can’t even begin to imagine what you and your family have been going thru. Lilee looks like a beautiful little girl that is so loved and cared for. I pray you would google Dr Burzynski Antineoplaston Therapy, if you haven’t already, and watch the documentary on him and his treatments. I will pray for you both that you will get her well beyond 3, well beyond 53 for that matter! You will be in my thoughts and prayers. Take care of that little one and yourself.
Sincerely, Chris Kustaski
Chelsey Jean,
I am one of the people at St. Timothy’s who has been praying for Lilee ever since Matthew brought her situation to our attention. He has let us share your news from time to time, so that we can focus our prayers. God is the ultimate healer and we will continue to ask for healing for Lilee and comfort and strength for all the family.
Blessings,
Florence
On Friday, I wandered by the spot on Granville Island where Andrew was performing. Actually, I was planning on boarding the aquabus, but his voice and lyrics were so compelling I couldn’t walk on by. i sat down, and was deeply touched by the three songs he did before the end of his time slot. When I arrived home, I googled, hoping to find a Youtube of him performing, but I couldn’t seem to find a thing. finally, I came across “Find a Busker” and so have learned about this story. I would like to link this blog on my own, with a little write up about you, Andrew and Lilee-Jean. I have just retired (high school music teacher) and am just barely paying the bills each month, but perhaps some of my readers will want to donate something, or perhaps, there are other ways that I could help out. My parter has a truck, we both have time – perhaps there is something you need delivered, or perhaps, just someone to sit with Lilee-Jean if she will be able to be released from isolation. I have a little dog who is great with kids. She just passed her test to do hospital visits. Again with the super-bug, I know that wouldn’t work.. just going through ideas that could make a difference. I’m not much of a prayer, but I sure can send love. Thank you for writing this blog. You are as courageous and beautiful as your little girl, and quite honestly, your words and Andrew’s music have gone straight to my heart.
I a sitting here, watching Dr, OZ and he had an interview , about St Judes. They had a little boy who had brain caner, and also was facing radiation treatment when he was too young, his parents found that St Judes, is the only hospital in the States, that does not use radiation on young patients, unless it is the only option , they have different treatment options, that little boy is now five and cancer free. The show was aired Dec 20, 2012, the main story was about sextuplets, this story was only about 10 mins in the middle of the show. I have no idea what options you have tried, or look into , I just wanted to let know about this just in case you had not heard about it, hugs and prayers, Lisa