Loving Taylor

I can't believe it has been one full week since we heard the great news that Taylor is in remission....I still wonder if I am dreaming.

The week brought many ups and downs. Taylor actually had her Broviac (central line) removed on Thursday. When I flushed her tubes, I noticed a very small hole in one of the tubes. This causes great concern because this puts Taylor at higher risk for infection. So.....she was taken in to surgery. She is now Broviac free and enjoyed her first real bath in 8 months this weekend. She and Savannah were in the bath until the water turned cold....they splashed and had the best time. So she is now "line free" and loving every minute of it!!!

Sean and I attended Elijah's funeral on Friday. It was a beautiful celebration of his life but heartbreaking. Elijah is truly in a better place but it just doesn't seem fair.....

So now that the words "remission" have been said and Taylor no longer has a central line there is so much to celebrate. It is what we have been praying/waiting for since June. Remission is a new found freedom and offers more of a "normal" life. But....as a parent, you cannot switch gears that easily. Taylor still has to have monthly blood draws, CT's, bone marrow aspirations, etc. Every time Taylor has a new bruise on her legs or stomach or complains that her legs hurt, my heart stops. Taylor is at such high risk of relapse that every day I wake up thinking, "is today the day??" I know faith and positive thinking are a must in our new cancer world but as a cancer parent, it is very easy to let your mind drift.....

My mind also wanders into what long term effects is Taylor going to experience from long term chemotherapy. When she was diagnosed, they went over numerous side effects of chemo...learning disabilities, heart problems, eye problems, her growth could be affected, infertility, and many more. Back when she first started chemo, I didn't have time to truly consider that although the chemo will hopefully "kill" the cancer, what will it also do to my 4 year old precious child.

So....do you see why...as a cancer parent, I struggle to fully celebrate the moment we hear "REMISSION?" The nagging question of "will she relapse" echoes in my brain every moment of every day. Please don't get me wrong.....I could not be more excited about remission....it is just very scary!!


I think that until I hear the word "cured" (which is roughly 10 years from now, IF Taylor doesn't relapse), I will not sleep soundly.

Please know that all of your well wishes, prayers, prayer chains, support, love, and generosity are never forgotten. We would not have made it through the past 8 months without all of the support we have received!!

Thank you also to all of the RN's, PCT's, and MD's at Phoenix Children's Hospital. You are all amazing. Thank you for loving Taylor so much!!

I will continue to provide updates every week or so....