[Mud Packer]

Thanks for checking in on the latest update for Andrew. I can tell you that it is going to be rather lengthy and I apologize ahead of time. This is one of the toughest updates that I have had to put together as I have tried three times already and scrapped each one. Right now it seems that my emotional tank is near empty but I promised you keep you in the loop. So here goes.

The last update I told you that they postponed the latest MRI due to anesthesia not feeling comfortable intubating him twice in two days. They had performed a lung sweep the day prior because he had low oxygen levels and streaking in his lungs. In between then and now, he has had another round of chemo, which he handled very well. So well in fact that he and my daughter-in-law traveled to southern Illinois to visit family and friends for about a week. During that time my son had some free time in the evenings after work to investigate post-chemo treatment options and read medical leterature, to start a plan that is evidence based, and with the input of the medical team they have come up with some interesting options that are available. As soon as I know more I will let you know.

Wednesday was the joint appointment with both the infectious disease doctor and the pulmonary doctor. The appointment was designed to help everyone understand and develop a plan to address Andrew's recurrent fevers and compromises in lung function. His specific blood work came back normal, and his chest x-rays showed some streaking, but the good news is he has never been diagnosed with pneumonia. The results from the lung sweep indicated no evidence of bacterial infection or major aspirations. This was wonderful news. The infectious disease doctor was very complimentary about Andrew's functioning and he said that his immune system wasn't being given enough credit for how well it was doing.

With all of that being said, he noted that Andrew has excessive oral secretions due to allergies and mucousitis (side effect of chemo). These secretions are particularly high after chemo. In addition, due to his vocal cord being paralyzed and weakness in his tongue, he has difficulty managing these secretions and periodically aspirates which pushes fluid into his lungs which in turn shows up as the streaky spots. When his immune system is normal, he is able to handle these infiltrations without problems. However, when his counts are low from chemo, he has difficulty managing these infiltrations and he develops a fever as his body is fighting the potential for infection.

The plan they prescribed is that Andrew will now be on prophylactic antibiotics and will be until he finishes cehmotherapy in October. He also now has an enhanced pulmonary regimen that includes the super drug Pulmozyme. My daughter-in-law reports that they can already see a difference in just this very short time period.

The next day was the MRI. I hate these weeks because I can hear the clock ticking and it seems like forever until it actually happens and then you don't know the results immediately. Well the results are in and I am happy to report the following: 1)That there are no new spots in either the brain or the spine. 2)Small brain cyst is smaller and 3)The FORMER (we like the word former) tumor site is now black and dark gray on the scan. Translation-normal brain tissue and NO NEW GROWTH! This was the third stable scan in a row and we are delighted. This is the best news that we could have heard.

With all this being said, the world of AT/RT changes rapidly. I am sorry to report that last week was a very difficult week for AT/RT patients and their families. I have mentioned a number of times that AT/RT is a very rare form of cancer and is very aggressive. With only 30 cases approximately reported in the United States in a year, you can understand the rarity. With this few cases and case studies, there are many treatment options being performed without a lot of numbers and some success stories out there. The families of AT/RT patients are a tight knit group that corresponds on a regular basis comparing notes on their little ones. While our news was wonderful and we would like to celebrate, that just isn't possible. The news last week is gut wrenching. Four families had news that wasn't so kind. Natalie and Caroline lost their battle last week while Grayson is fighting for his life. Jake has been doing very well but it was reported that he has had a reoccurrence. These youngsters are all under the age of five. I ask that you remember these little ones and their families in your thoughts and prayers. If not for the grace of God, this could be our family.

Thank you all for following along on Andrew's journey. The Padfield family is truly indebted to you for your thoughts, well wishes, gifts and especially your prayers. We are so thankful to live on for another day and pray for more tomorrows. I hope to see you at the races.