Notes from Monday's Conference

As many of you know, we had a conference with Dr. Valez (Matt's main oncologist) on Monday evening. She took plenty of time with us and answered all of our questions and gave us a lot of information. Here is what we can share:

1. They are going to start the next chemo cycle on Saturday (12/19) instead of today (12/15) so that Matt can feel good for the Christmas party.

2. After this cycle (No. 5) they are going to do another MRI and use that data to decide whether or not to give him the 6th cycle of chemo. This is because the MRI that they took last week showed "stable disease" - no better, no worse. If the MRI after cycle 5 continues to show stable disease, it's time to question whether we've gotten the maximum effect from the chemo. There is no point in giving him more chemo if it's not going to do any good.

3. They are also going to do a spinal tap on Tuesday (12/22) to check for the chemical markers that the tumors emit. This will help them figure out his progress. Fortunately for Matt, Children's does the spinal taps under sedation.

4. After the chemo is over, he is going to get 6 weeks of radiation, M - F at Touro Infirmary. He is not moving there, they are going to transport him back and forth from Children's to Touro every day.

5. Matt's bed sore is potentially going to create a problem for the radiation when they get down to that section of the spine. The docs are thinking about what to do. Options include delaying start of the radiation (up to 6 weeks is allowed) or starting with the brain and upper spine and saving the lower spine for last.

6. The side effects of the radiation will be about as bad as the chemo.

7. Dr. Valez explained to us that it is very difficult to make progress with rehab while getting chemo or radiation. She told us that our expectations/goals should revolve around Matt holding his ground. In other words, not losing some function should be considered a victory. While somewhat hard to take at first, this explanation helped us develop realistic expectations and to be grateful for the little things that he can do. Bottom line is that Matt will probably not make significant rehab progress until he is finished with the chemo and radiation.

8. Realistically, Matt has several more months in the hospital so we're in for a long haul but it's better to know that now than to have some false hope that he is going home soon.

As usual, you are welcome and encouraged to visit Matt as long as you are not sick. Also, please continue to pray for healing.

We all appreciate your continuing support for our family and are grateful for all you have done for us and for the love that you have shown toward us.

God bless you all.

John, Noel, Lizzy, Matt and David