Thursday, July 31st, 2008

Thursday, July 31st, 2008 - We had our meeting with Dr. Jeff this afternoon, and Mattie begins Chemo on Tuesday, August 5th. Although we have a second CT Scan of the lower part of the lungs (that were not clear from the first CT), a CT Scan of the arm (for a baseline image) and a Bone Scan tomorrow, we are scheduling Mattie to begin his chemo regimen on Tuesday.

Chemo - Mattie will be getting three drugs: Doxorubicin (red), Cisplatin (clear) and Methotrexate (yellow). The cycle will go as follows:

• Week 1 - Both Doxorubicin and Cisplatin will be administered. The Doxorubicin requires continuous infusion over a 48 hour period and the Cisplatin takes 4 hours to be administered. This will require in-patient treatment where Mattie will be admitted and will stay in the in-patient oncology unit for 3 days or so, and then will be released.
• Week 2 - Recovery time at home.
• Week 3 - Recovery time at home.
• Week 4 - Methotrexate will be administered over a 4 hour period (again, in-patient administration in the oncology unit). This will require 12-16 hours of hydration first, and then the administration of the drug. The administration will then be followed by more hydration, and then steady monitoring for 3 to 5 days to make sure the levels of the drugs in his system are reduced, at which point he will be discharged.
• Week 5 - Another dose of Methotrexate (see above description).

So the above items compose a cycle. We have two cycles to do first, and then Mattie will under-go surgery on the arm to remove the diseased tissue. Chemo is done first since there is the chance of not only stopping growth of the cancer and killing it, but more importantly, the tumor can shrink thereby reducing the extent of surgery required. Surgery will then be followed by at least 4 more cycles of chemo (as described above, except that the Cisplatin will not be included in the last two cycles) to hopefully eradicate the cancer once and for all. So, if all goes as planned, then with holidays and extra time for the non-planned issues that might arise, Mattie could be finishing up with his chemo and surgery by his 7th birthday in April 2009.

Each cycle will require Mattie to be staying at the hospital probably 3-5 days during week 1, and 4-5 days during weeks 4 and 5. Fortunately, both Vicki and Pete can stay over with him, so we are starting to think about the arrangements for next week, and how best to handle the logistics.

We are trying to not only digest and process all this information, but we also need to make decisions about whether Mattie gets a port or a line (catheter) inserted into his chest to receive the medications. Both options have pros and cons associated with each so we are trying to make the right decisions while considering what will be the best and least impacting for Mattie. The port or line will eliminate the need to start an IV (requiring a venapuncture each time) whenever Mattie needs injections of any sort (since he will be getting so many). Plus it makes living with this a little less painful.

The chemo has all kinds of negative side affects that we are also trying to come to grips with, and that will require a variety of different medicines (to treat the nausea, to protect his hearing and heart muscle, to deal with the mucositis, to bring up his white blood cell count and to mitigate/prevent other negative side affects from occurring).

We are also evaluating Mattie's possible participation in a clinical trial that addresses post-surgery treatment options (all chemo). We have a lot of questions about possible participation, but we will have to make a decision by Monday.

Dr. Jeff and team spent three hours talking with us today to start getting us grounded in what we are facing. On a lighter note, Dr. Jeff explained to Mattie what was happening to him and what he was facing in a way that was easy for Mattie to understand.

On a lighter note, you should see a sequence of pictures of Mattie stomping dead the "bug" that is in his arm (the bug was made out of Playdough that Dr. Jeff created for Mattie to then squash). Dr. Jeff explained to Mattie using Duplos first, that some parts of his arm didn't behave correctly and kept growing when they should not have, and that using medicine and with "Mr. Henshaw's" surgery, that we were going to (as Mattie says) "kill those bugs" in his arm. Dr. Jeff then made the Playdough bug, which Mattie then promptly squashed, and then posted on the wall of the clinic.

Mattie understands what will have to happen from a high level, and we'll just cross the other bridges when we get to them.

More to be posted tomorrow as we start getting smart about chemo.