When we found out that Saoirse's cancer came back, we felt a very strong urgency to stop the cancer. When it comes back there is a less that 1% chance of cure. I have had a strong, deep and dull pain in my inner being since we found out. We have to have a plan in place for a few different scenario's. Saoirse stated full skull radiation on the 17th of November, along with 2 chemo drugs in hopes of stopping the aggressive cancer. We were all set to go to NYC Sloan to do this because sloan does the radiation 2 times a day with a brain saving technique. However Children's came back and told us that they will do the same thing for us. This was important to us and they rearranged schedules and worked extra hours to make it happen. Saoirse handled it like the champ she is. Since she had to be sedated for the radiation, she was NPO all day with only clears in between and nothing 4 hours before the treatment. We had some rough cranky moments but we all made it through it. The good news is that we and the doctors think it is working because her Eye is almost all the way normal and the lumps in her head are getting smaller. She is feeling good and slowly getting back to her old self. It will take some time though. She finished her last radiation treatment tonight. She has 1 more cycle of cheom starting mid next week and it will last 5 days, then we wait a week and re scan. That scan will determine our next course of treatment. If she is having a good response, meaning the cancer is responding and in control, we will try to get her into the Humanized 3f8 antibody therapy at sloan. If she does not have a good response and If we can't get there, we will more than likely do MIBG therapy, which is a type of radiation that is given intravenously and is radioactive, or we will do a phase 1 trial in michigan it started as a pilot trial testing the feasibility of using molecular-guided therapy in patients with refractory or recurrent neuroblastoma.
Saoirse just loves life so much and is so smart She amazes me everyday and encouraging her to grow and learn is fun. I learn so much from her.
I am a husband. A dad. A business owner. My wife's cancer relapsed. We have a 3 year old. Did I mention my kid died of cancer? I write about all of it.
Mike, thanks for the update on Saoirse and potential paths for treatment. It is always good to know what is going on - there are so many people that think about you and your family every day.
ReplyDeleteYou guys are doing great in an unimaginable situation and you should be proud of your amazing daughter (as you obviously are). I am confident that Saoirse feels how much she is loved and cared for and admired/enjoyed by you and Kezia (and others).
I hope you (and Kezia) are taking care of yourselves too (eating, sleeping, taking a few minutes for yourself, etc.), so you can be as healthy as possible for your daughter. And I hope you are as proud of yourself and your family as the rest of us are.
Prayers and well wishes to your family every day.