We need to say a gigantic thank you to all of our friends and family. Without you all we could not remain strong. We have had dinner delivered to us each night, and many of you have been taking care of Susannah during the day. Not to mention the number of prayers around the country (and the world for that matter). We are truly blessed and we know that this network will help bring Rosalie through therapy.
Rosalie is getting a little better each day. She is frustrated with her "double vision" (one eye keeps turning inward), but the doctors assure us that this will go away in time. She has begun moving her right arm quite a bit, so I would imagine that we will see more motor function each day. Most importantly, we know she is cognitively there. She still cries when daddy has to go, and she cries when Blue's Clues is over. So we know she is aware of what is going on. And she still looks like the cute, juicy little girl that she is.
The decision of which cancer therapy to go through is a decision that I don't wish on anyone. The side effects of each of these chemicals and of radiation are really, really scary. And yet, it is the hope that we have. I remember being scared that if Rosalie became sick as an infant she might need a spinal tap - now that is absolutely the least of my worries. Our idea of "normal" has completely changed.
With the help of many medical professionals, we have decided on a course of treatment which includes chemotherapy and focal radiation. A big credit ot Mark for doing a TON of research and for making sure that he spoke to the top people in the field (including the head of the Children's Oncology Group and doctor who specializes in this kind of tumor for children under three at St. Jude's). The medical world knows that medullablastoma is a tumor that reacts very well to radiation. Because of her age, full cranial radiation would be devastating, so there is a lot of promise that focal radiation will hit the tumor site (where it would be most likely to reoccur). Her treatment will include four months of chemotherapy, six weeks of radiation, and then another eight months of chemo. For more details, we have posted the actual "protocol" on the blog.
We have a long year ahead of us. We know we can do it though, and we look forward to the day when this is all just a memory.
Keep her in your prayers.
Love,
Carolyn
2 comments:
Dear Carolyn, Mark, Rosalie, and Susannah, I think of you every day, and I - like all your friends and family - wish there was something I could do. Know that prayers are being sent from London for you all. Much love, Lindsey
Dear everyone, I'm sure that all of this will be just a memory and be sure that we keep all of you in our prayers! Carolyn, you are the best person and the best mom that both of the girls can have, you arrive from a very good "school"; be sure to give love to both of them and everything will be OK!!!
I really would love to be there to help you, with so much love, your italian sister and friend Chiara (and Co.)
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