This post is long overdue! I am sure you are all as busy as I am with the holiday season upon us. This is my first with a baby and WOW what a difference it makes! It is going to be such a great Christmas for us and we are so excited to share some good news we got recently.
On Dec 9th we checked in at St Jude’s Children’s Research Hospital. We were so grateful to be admitted at such a wonderful facility. I am sure most of you are familiar with St Jude’s, but it really is an incredible place. I cannot imagine a better environment for these children who are fighting for their lives. Because of this hospital and their never-ending commmitment to research, the childhood cancer survival rates have been consistently improving. Please check out their website and consider giving; they are a 100% cost-free facility, operating at a cost of about a million dollars a day through donations. www.stjude.org
We had traveled to St Jude’s for Tilly’s resection surgery. After completing further scans, they determined that the surgery was ultimately too risky for the potential benefits and decided not to operate. So rather than spending the next week in ICU, we were on our way home the next day! Ryan and I were absolutely thrilled with this news. It was really more than either of us could have asked, given that we were informed at the beginning of her protocol that additional surgery would be involved.
That being said, I tweeted earlier this week about inaccuracies in reporting on Tilly’s condition. I think that if I wasn’t in my own shoes, I wouldn’t know any different and would have drawn the same conclusion others did. But for some reason, it really frustrated me to be on the receiving end of so many messages about Tilly’s health that were extrapolated from a small piece of information. I can’t really explain exactly why it was so irritating. I am extremely protective of her and sometimes I can’t justify how I feel, I just know that I feel that way.
Cancer never “didn’t happen.” You don’t go from having cancer to not having cancer overnight. You don’t get to forget all about it and wake up the next day a totally normal person. At best, you get to be in one of various levels of remission. Don’t get me wrong, we were ecstatic to hear that she wasn’t having surgery and is moving onto the monitoring phase of her protocol, but like anyone who has had cancer or been close to a cancer patient knows, by no means is she done. I really struggle with how much information to share on the subject because I really don’t feel like it is mine to share. It is Tilly’s, and while she can’t say anything yet, I somehow doubt that if she could she would divulge all of the details. So I will just say this: she is doing incredibly well. We have had our last anticipated chemo and everyone is very optimistic about her continued health. She faces challenges going forward that stem from the original location of her tumor. I have no doubts, however, that she can overcome it all. We work hard every single day to get as much normalcy back for her as possible. She has shown so much progress and strength; I couldn’t be more proud of her.
I appreciate all of the support as always! Today I am going to ask that you think of someone else though. Through this experience I met a little boy named Brody, and I have been so lucky to have his mom Bristol to talk to and lean on. Brody has stage 4 Neuroblastoma and his surgery is today at St Jude’s. Please say a prayer for his surgery to go well and for a quick recovery. He has a long road ahead and will need continued support as well. If you wish, you can “like” his Facebook page and follow his journey here: https://www.facebook.com/BrodysFightAgainstNeuroblastoma I have met some really awesome people through all of this and I consider this family to be among the best.
I think I have said quite enough! Thank you all for reading and caring for my sweet girl. I sincerely appreciate you.
Tilly got pictures made yesterday so I will update again soon with a couple of them; I think they’re going to be so cute!
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