Update as of Wednesday May 17, 2006

Hello Everyone,

Yesterday was Tuesday, and Tuesdays are doctor days.
So, let’s get right to the most important thing in the world, MARIA.
Maria received her 20th treatment yesterday and has only 10 left. She is doing well. Her white blood cells have gone up slightly and her platelets are steady at about 350,000 (which I am told is very good). She is starting to lose a little bit of hair. This is not because of her Chemotherapy, but because of her radiation. It will most likely bald or thin in about 3 or 4 spots. After her treatments stop it will grow back a little thicker and a little curlier.

We have lowered her steroids to almost 1 mg a day from 8 mg. Having been on that many steroids makes you very temperamental and constantly hungry. It causes you to put on weight. It is very noticeable that Maria has come down on her steroids. She laughs again and has started to lose a little weight. They tell us that it should take about 8 weeks for her to lose the weight gain. This is amazing because she has gained about 15 lbs and I would love to lose 15 lbs in 8 weeks.

Yesterday also had a surprise for us in that they scheduled an MRI. We were not expecting it because we were told that it was not supposed to be scheduled for another week or two. It was not a complete MRI, it was an MRI known as a Simulation MRI. The simplest way for me to explain it is that it is not a very detailed MRI, but it is used to determine location and size only. (Personally, I think it’s just an older machine that they can only use for basic reading, but I am no doctor and I did not stay at a Holiday Inn Express last night so I’m just making that up.)

Just to summarize for you, Maria’s tumor has caused a lot of problems with her motor skills. In the cranial area, she lost her hearing on her right side, her ability to speak clearly, the right side of her face had gone numb, she had trouble swallowing, and she was seeing double. With the body, it is her left side. She was weaker in grip, walking, and all other motor functions on the left side.

Weeks ago, when the treatments started, we were told not to expect any of her cranial issues to come back, at least not for a few months, but that we should expect her body to come back. Last week our radiologist, Dr. Larry Kun, told us that Maria was coming along FASTER than expected. She has about 90% of her talking and swallowing ability back. She can smile about 50%. She can wink both her eyes separately. She can even hear a little, just a little from her right ear. She can walk very well.

Dr. Kun told us that even though we have seen some improvement, he expects not to notice any shrinkage in the tumor itself. The treatments have helped the nerves around the tumor, but have not started to shrink it. Just so you know, radiation continues to work for up to 5 months AFTER her last treatment. We should expect to hear some results Thursday or Friday.

So what about her Chemotherapy? Well, we are using Tarceva which is an Erlotinib drug, similar to Irrissa, but supposed to be newer and has been proven to be more effective in adults. No one knows how this treatment will work since we are one of the first to try it. So we don’t know what to look for or when to expect anything. I will tell you after all of our research, we hope it will keep the tumor from growing again or maybe even kill it. In order for this to happen we're counting on the miracle.

We will keep you posted.

As for the family, we miss home. It is really hard for everyone to play since they have no friends to play with. We are in a corner house of a busy street so it is difficult to let the boys run around and play without constant supervision (which isn’t too bad because we actually get to spend a lot more time with them).

Megan is doing very well health wise for just having a baby 8 weeks ago with the serious complications she had (it seems like 8 years ago since so much has happened). She is the best mom and looks great. She is a pillar of strength for Maria. They are best friends!

We are counting the days until Maria’s last radiation treatment on May 31, 2006. Afterwards, mom and the kids will be on a plane back home…dad will be a day behind because he is going to drive the family van back.

I had the opportunity to go home last week for about 30 hours to check on the house and try and get some work done. I stopped in on the noon rosary at St. Raphael’s. This is such a powerful form of prayer especially in the month of Our Lady. We have received so many notes and comments from many people we don’t even know that say because of Maria, they are praying more. That says something. We can not pray enough. May 31, 2006 is the last day of the noon rosary at St. Raphael’s and Maria’s last day of radiation treatment. We are hoping that everyone storms the church with a very strong rosary on that day. When I was there, it only took about 22 mins. It was awesome. If you have the time, please mark your calendar for May 31, 2006 for the noon rosary for Maria.

Everyone has been so kind to us. We can not tell you how much support we have received. Everyday there is another thoughtful person offering there time, energy, love, prayer and resources. Thank you everyone. We love you.

God Bless,
Ed and Megan