Posted on January 23, 2015
Hi everybody, Jason here.
It’s been a while since I have posted an update and I cannot believe how much has happened in the past few days. Sunday is healing from the surgery wonderfully. She has been up and walking quite a bit. At first to the corner, then the next day to the corner and back and now today two blocks down to the hospital for a doctors appointment and back!!! I’m really proud of her and her motivation to not let this bring her down. This week is filled with lots of post-op follow up appointments, as well as lots of appointments with doctors, nurses and technicians for blood draws and testing for qualifications for the DC Vacc. clinical study and preparation for chemo and radiation. In about a week and half they will do the leukapheresis, where they take Sundays blood and extract the white blood cells and then put her blood back into her. It’s a looped system that takes about 4 hours to complete the process. Then they use her white blood cells to make her vaccine for the clinical trial. After that we can return to Canada and start the 6 weeks of low dose chemo and radiation therapy. This is 5 days a week for 6 weeks then a two week break and they do an MRI. Based on the results of the MRI this will determine if Sunday still qualifies for this particular clinical study. If so, then the vaccine injections begin and will continue over the next three years.
What blows me away is that brain surgery in itself is more than enough, but for us, this is just the first hurdle of this crazy journey we are on. Some days we feel on top of the world and we got this thing beat and on other days we are terrified of what is going on and the battle that Sunday is fighting. It breaks my heart everyday to see all this happening to her. Sweet, sweet Sunday. She is a princess warrior. She is, with out a doubt, the most beautiful being and so, so incredibly strong. She amazes me. She inspires me. She shows me so much beauty every day.
I also really want you all to know how much we appreciate everyones support in getting us here. Your generosity, on every level, opened a door for us that we are so grateful for. To be here, at UCLA, in the hands of the best neuro-surgeon team and to be a part of this clinical trial. Dr. Linda Liau met with us after the surgery and showed us the MRI imaging before the surgery and after. And there is no remaining tumor tissue on the post-op MRI. We are really happy with the results of this incredible woman’s work. As we progress, we’ll continue to do everything we can to make sure that Sunday continues to get the best possible treatment available. So thank you so much.
Also, I have come to realize how important it in in having as much information as possible really helps with decision making. It feels like they want know today but needed the answer yesterday. I know that I have shared this before, but our friend Stephen Westerns has an amazing website on which he provides a wealth of information http://astrocytomaoptions.com. I share it with you so that you can share it with others. It’s all so overwhelming and having the information at hand has helped us a lot, and brain tumors seem to be coming more common. He knows a lot about clinical trials and having the opportunity of being in a clinical trial is pretty amazing. It’s going to be where a cure is found for Sunday and it will contribute to a part of science that is saving and will save hundreds of lives. And now, we are all a part of it.
Enjoy your day, really try to live in the moment, and hug each other lots, it feels good!
So much love and gratitude,