Thursday, February 9, 2012


JD and I met with Clay's doctors yesterday to go over the MRI. The results were "good" in that the main tumor is slightly smaller than in the December MRI. Not "great" since Avastin typically gives the biggest shrinkage at the beginning of the protocol, and therefore the doctors' expectations were high. The tumor appears to have reconfigured, and pulled back from the optic nerve, which has allowed Clay to regain his vision. For now the plan is to continue the bi-weekly protocol and rescan in another two months. Next week the PICC line will come out. We are going to give it a go with doing future treatments with an IV. This will spare Clay another surgery, and the worry associated with having another foreign body in him (the port).

Please take a minute to cast a vote for Rex Burkehead, a running back for the Nebraska Huskers, for Uplifting Athlete of the Year Award. This award goes to the college football player that has made a lasting impact on a rare disease. Rex has befriended a boy named Jack, who suffers from the same disease as Clay. Their friendship has received some media attention already, which is helping raise awareness of both the disease, and PLGA -- the only group that is funding the research for low grade pediatric gliomas. If Rex wins, he will be featured on ESPN and numerous other national sports shows but MOST IMPORTANTLY he will receive his award directly from the National Institute of Health. This would be great for our cause and getting PLGA on the research agenda for the NIH and NCI.

The final award decision is based on total number of votes (there are 4 competing athletes). Between now and February 26th, you can cast your vote for Rex by going to (scroll to the bottom of the page to register your name and vote...It takes ONE MINUTE). Please spread the word and ask friends and family to do the same...)

As always, thank you for your support.

Sunday, February 5, 2012

Feb 5

The past few weeks have been good ones, with Clay going to school most days. He has made some nice friends, and his teachers could not be more wonderful. Here he is with a school buddy working on his latest project. He is learning all sorts of things, and this week reported to me that Pluto is no longer a planet, but a "dwarf planet." When I asked what that meant, he told me that "you used to be able to drive there, but now it is made of gas, so you can't." Hmmm. I wonder why Wikipedia is missing this important detail.

We enjoyed a visit from Aunt Amy and Grandma Inez this past week. The kids favorite activity was fondue dinner at the Melting Pot. Really, what could be better than dipping marshmallows and cheesecake into hot pots of chocolate? We also started a 1,000 piece puzzle that kept us all incredibly focused, however, there is a good chance the puzzles completion may require another visit.

Clay's next MRI is tomorrow. We will give an update after our consultation next Wednesday. Please keep Clay in your prayers tonight.