More Sunshine Please
I have been meaning to write an update on Lina and on the results from
tumor board but I am having a difficult time.Tumor board met last week and we were anxiously waiting to hear back. Our onc called us back on Friday evening, which was super nice since he had to make the phone
call from home.Tumor board confirmed what we long thought and feared, surgery is the next step. Our onc elaborated on what the different surgeons proposed and the extend of what is involved in this surgery shocked me more than I can say. We are meeting with the surgeons tomorrow morning first thing to ask our 30+ questions.
I have been frantically educating myself about different surgical procedures and connecting with very lovely neuroblastoma families mostly in the US, whose children had para and intraspinal tumors as well. It really helps to hear positive stories and through their stories we have learned about different surgical possibilities.We will be discussing everything we have learned from them with the surgeons. We are anxiously waiting to hear back from New York so that we can make a decision. "to make a decision" wow, it is super easy to type these words, but the truth is, I am struggling. How do you decide. The thought about the long term side effects, the life altering changes for Lina's future are overwhelming and I often feel I cannot breathe. Mike and I are well aware that our best shot at keeping Lina alive and hopefully cancer free will be this surgery, but it does not make it any easier. I always thought chemo was stressful, but manageable. This waiting and decision making period is way harder, at least for me. Not having an exact plan and having to be the advocate for your child and ultimately making a decision that will most likely change your child's life forever, just isn't fun. I am hoping things will get
easier once we hear the approaches from both hospitals.
On a happier note, Lina is doing great. All her favorite things to do right now are kind of dangerous and I sure hope her platelets are good. Lina loves to climb on everything, the higher the better. She loves standing on her little run tricycle and running backwards around the house. Her and Frieda are an awesome team and sisters in crime :) Lina's hair is slowly growing back, but I still have to get used to it. It is "chemo hair" Last summer my baby had blond curls now it looks dark and straight. Its structure has changed as well, it does not feel like
baby hair, it is way coarser.
I will update again once we know more and have digested what we have learned. In the meantime I am hoping for more sunshine so that we can enjoy walks and back yard time, it makes me almost feel
like a "normal" family at times.
Thank you all for your support
Kati