The past few days I have been off and on.. Last week we found out that Saoirse's autopsy is completed and her oncology doctors want to meet with us to go over the report. This means we also have to go to the Jimmy Fund. This is going to be very emotional.. but we will be strong, cry and move forward. So I guess I have been a bit emotional and a bit wanting to avoid my feelings.. Today it dawned on me that Kezia and I have to face this and do our best to support each other. I am back on track now and will write more about this as the meeting gets closer.. This week
Deep breath..
When we took Saoirse to the Jimmy Fund for treatment or clinic we did the best we could to find fun things for her to do in between labs, during chemo treatments and / or transfusions.. It was pretty challenging sometimes and the Childlife Specialists and volunteers are wonderful in creating new projects for the kids.. Saoirse loved drawing, painting, playing with the toys, watching the fish and sliding on the slide over and over (when she felt well enough).. The 1 thing she had to do after checking in was to hug the large stuffed bear sitting on the boat in the play room. She loved that bear.. It made her feel real good..
New video coming soon of Saoirse reading a book.. :)
My thoughts and prayers are with you when you and Kezia go to Jimmy Fund. I know how difficult it is. I like the photo. :) Stuffed animals, real animals, etc usually make children feel comfort and happy when something is making them scared, unhappy, and other things.
ReplyDeletePrecious photo- so sweet.
ReplyDeleteWon't comment on anything else, as not much to say there, only - thinking and praying for you always.
Going through Alexander's autopsy was tough. But, it also gave us some answers. We learned that he would have likely never beaten his neuroblastoma. So, as hard as it was to loose him so quickly and tramatactly, in some ways, we learned that he was "saved" from a lot of pain and suffering. I hope that you are able to find some comfort in the report. Returning to the hospital the first time will be hard. Prayers for you both
ReplyDeleteThe Jimmy Fund staff are great with kids, I always admire them for what they do to try making kids just be like kids as much as possible. I hope some studies have been or will be done to try to figure out why her tumor was so bad and hopefully develop better treatments in the future. I also hope that the people who may work on this know Saoirse and her story, there is no better motivation than seeing a real person behind a "case". I have been reading and thinking about this a lot, it will not be easy to cure these embryonic tumors, but I do believe it can be done. It has to be done and there are some promising new directions.
ReplyDeleteSuch a sweet photo.
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