Update

Mason at field day at School with friends

We finished the round of Temodar last week. He was okay. He had some stomach problems at the end of the week, but overall he tolerated it pretty well. We are still struggling with constipation but we have had no trips to the hospital.

He went to field day at school, his brother's soccer party on Friday and an Orioles game on Saturday with Kirk's uncle. So we keep busy as best we can. He is running around. You wouldn't know his diagnosis or prognosis if you looked at him. Which is a blessing. He argues with his brother, plays with Francisca and is looking forward to visits from friends from Ecuador later this week.

School ends this week and we begin to plan the summer as best we can. He has a clinic appointment on Thursday. We'll keep you posted.

We keep on fighting!!!

Despite the awful news last week, we continue to keep life as normal as possible. We closed on our home and have moved in. The boys love it and are enjoying the space. We are so lucky to have such wonderful friends here in DC. They helped us move in and lent such a hand Saturday. Thank you Thank You Thank you!

Mason started his chemo Monday. He continues to have some bathroom problems and has to be catheterized a couple of times a day. He is on steroids- so at least he is eating like a champ. He has eaten more chicken and broccoli Chinese food in the past week than he has eaten in his lifetime. The ladies at the Chinese food place give him extra chicken and take care of him.

We have done our due diligence in terms of other opinions and so far the plan will be to have him be on Temodar for one or two rounds to get him to the clinical trial. He has to be 12 weeks post radiation for the trial so the chemo covers him before that. Radiation was not an option as it would not be strong enough to deal with the tumor and the chance for paralysis and toxicity was too high. They cannot operate due to its location.

So we continue to look for a miracle. We keep smiles on our faces for him and try and live life as best we can. He and we all deserve that.

Update

We met with Drs. Packer and Rood. Mason's mixed response to the radiation, where one new lesion forms while all the others diminish (i.e., respond appropriately) is very rare, something they only see every two or three years. They are going to repeat the MRI just to make sure the mass at the base of the spine is not "blood debris". Given that his bowels were not working, and the mass is right where those nerves are, it is highly unlikely that it is something other than a tumor.

NIH claims that the area of the mass was included in the radiation. We are getting the reports. There is no way to radiate more.

So, we are on to experimental treatments. He still has to wait another six weeks to start the experimental protocol, as he has to be 12 weeks post-radiation to start. In the meantime, he will take oral chemo to try to keep the mass from growing. The experimental treatment is a combination of two drugs that have worked to eradicate medulloblastoma in mice.

Some bad news

Mason's MRI was this morning. There was a new mass in the base of his spine, despite the fact that all the other masses in his spine and brain responded well to the treatment, shrinking or disappearing. The doctor mentioned that it is bizarre that a new mass would have formed, although he also said it is bizarre that part of the spine would have been missed in the radiation, since it is standard to radiate the whole spine. We don't have the final reading, but it is not good. We will talk with docs this afternoon and tomorrow about a plan of action. We will tread in uncharted waters. Whatever it takes to keep him alive and with quality of life as best we can. We are heartbroken.

He is in the hospital probably until tomm. We are in room 4165- 202-884-4377.

More pics