Hello Everyone

I finally found a link to a copy of the journal published by the trial that Derek will be participating in.  Make sure to put your medical vocabulary hat on, it can be some heavy reading.  This is the most current journal they have published on the study.[...]

We just got confirmation that the physicians associated with the vaccine trial reviewed Derek's case and they agreed with our local oncologist that Derek would be a good candidate for the vaccine trial.  I believe this is great news! [...]

Today was Derek's 10th radiation treatment with 23 more to go. His last radiation treatment will be 1 month from today.

We met with oncology today. Blood was drawn and that went well. Evidently everyone at the study site was on vacation at the end of the year, thus why we have not heard anything. our oncologist has been communicating with them this week to try to get us more information and maybe a definite answer as to whether Derek is in the study or not. Out of all of the studies that are going on right now, she believes this is the most promising option, and even the only viable option. She is fully versed on all of the studies and we trust her discernment. She has Derek's quality of life and outcome as her utmost concern. We hope to hear this week so we can start looking at and setting up flights, hotels, and transportation for the multiple and frequent trips out east. [...]

1 month ago today Derek had brain surgery. Not just the drain being inserted, which is still a big deal, but all out someone in the center of his brain for 6 hours. Right above his brain stem, right next to the thalamus. Inside a tumor connected to his thalamus. What does the thalamus do? To quote News-medical.net: "[...]

It has been a good day. We had a lot of fun playing out in the snow. It is amazing how far Derek has come since his first snow outing home from the hospital. He was moving around pretty well in the snow. Tonight he surprised us with running!! And then, after running a few times across the house, he jumped. It was wonderful to see, and he was so excited. He has not run in what feels like an eternity, but is only probably a little more than 5 weeks ago. His hard work continues to pay off.[...]

Thank you so much for making the switch with us over to Derek's new site. This is where we will have all of the new updates going forward. We don't have much to update yet today. Derek wants to go out and play in the snow followed by some diet acceptable hot chocolate so that is at the top of our to-do list for today.[...]

Originally posted: January 1, 2016

Today was a day where we were able to stay home. Do nothing. To just be together. Even when you are trying to not think about the cancer living in your home, in the center of your son's head, it is always there. As we start the new year, I have deliberately not thought about what the year holds. Yes, the thoughts have tried to creep in.[...]

Originally posted: December 31, 2015

Well the end of 2015 was sure a surprise, but that makes us none the less thankful for the year we had. We are looking forward to 2016. I guess it is coming whether we look forward to it or not. There most certainly will be challenges, struggles, (insert whatever word your thesaurus comes up with here), but there will still be amazing memories made and good times had together as a family. We do not travel this path alone. We have had amazing support thus far by so many amazing people. Thank you all. But all the more we could not have made it this far or heading into the unknown without our faith.[...]

Originally posted: December 30, 2015

So the days are passing and things seem to be as stable as we have had for over a month. That is not saying too much though. Radiation continues to go well. There was some trouble with the machine yesterday that made the appointment take a lot longer, but that seems to have been an isolated incident. The meeting with the radiation Dr did not produce much as far as new information. We did find out that we are putting the lotion we are to use after radiation in the right areas. Also, we realized that his hair is so thick that the lotion was probably not getting to his head. So he got a haircut last night. I was not going anywhere near the incision on the top of his head but we got the back and sides. Lotion application is much easier now.
No news on the study.[...]

Originally posted: December 26, 2015

We were gifted tickets to The Wizard of Oz. Derek was unsure if he would be able to sit through the whole thing. He was right. He was done at intermission. It was a wonderful show. Derek still has a hard time with sitting for long. He is getting stronger though. He was out helping shovel the snow. One handed with a one armed toss behind him, but he was without his walker for it. Getting down to the ground/floor and back up is still an issue but he is making great strides. He remains a positive and amazing little boy. Never crabby and always full of hugs.
We would like to extend a HUGE thank you to all of the Target employees who have made amazing contributions to us when we haven't ever met you all. You are an amazing group of people. Thank you.
Thank you to everyone who has been supportive throughout this past month.[...]