I have finally found the courage to write my first blog post. I think that these will get easier, but I’ve struggled for several days trying to decide what to say. I am still figuring out how to approach this situation and deciding how much detail I feel comfortable sharing. I was surprised when the news about Tilly got out. I made a post on my personal Facebook page (not fan page) and someone posted it on a Big Brother website. I wasn’t upset because I knew I would share the news eventually; it just caught me off guard. So forgive me for taking so long to find the words to say here……it is a bit of a struggle.
My little girl was 7 weeks and 1 day old when we rushed her to the emergency room. We had been making regular visits to the pediatrician for weeks trying to figure out why she seemed so unwell. I researched like a crazy person for answers, but everything that I found pointed to “normal baby behavior” and I was constantly reassured that she would grow out of this “fussy phase.” I held onto those words while we waited for answers. We found out at 4am on Labor Day that she had cancer. It was shocking to say the least. Cancer hadn’t been a consideration, not even a worse-case scenario. I don’t like to think/talk about a single minute of those 24 hours. I know that I had never truly been heartbroken in my life until that moment. I had never really felt helpless. I had never really known what it was like to cry. That was the first time that I learned what those things really felt like.
Tilly started chemotherapy within 26 hours of being diagnosed. She had biopsy surgery the following day and recovered from both like a champion! After 2 1/2 weeks we got to spend a few days at home before we went back for her 2nd round of chemo. She is still on the mend from that now but is doing well. I am so proud of her. She inspires me with her strength and keeps me going. Many times I would have probably crumbled if she wasn’t smiling.
Today we are in a place of hope and optimism. All news has been good news since the diagnosis. I find a thousand blessings in the situation each day. I am grateful for her age and inability to remember the pain. I am grateful for her team of doctors and their knowledge in treating her. I am grateful for a small platform to bring awareness to this disease and the thousands of other children (and parents) who suffer.
Mostly, I feel blessed for the outpouring of support from so many people. I am grateful to have so many amazing friends who have made a most terrible situation a little better. They continue to surprise me by doing little (and sometimes big) things for Tilly, Ryan, and I. In fact, this site wasn’t my idea at all, but a gift from a couple of the best. I am touched by the support of all of you who are reading this. I mean it when I say that I am appreciative of each prayer that goes up in her name. I am grateful for your kind messages on twitter. I can’t tell you how dramatically my spirits have been lifted by so many notes of encouragement and hope that I have received.
I never had any plans to be this person…..a mom who blogs about her daughter’s journey fighting cancer. But here I am. Sometimes I will be a little shaky because I really don’t know what I am doing, but I will do the best job that I can. Thank you for taking the time to listen and care. I will update again soon.