New Hope?

Once again, this update is coming much later than we had hoped. My intention was to update when we returned from our Disney Cruise, but then we received the heartbreaking news abut Maria, and it was too hard to update. Then I thought I would have the strength to update on July 21 - our five month mark since diagnosis, but then we were consumed with researching a new protocol and time slipped away. Now here we are on July 30 and we're just sitting down to gather our thoughts and update our loving supporters on what has happened in the last few weeks.

Yes...it has been a while since we last updated. Yes...we have been busy, but that is no excuse. One reason we have not been updating as frequently is because it’s harder and harder to stay positive. We approached this challenge with hope and optimism. However, watching Sophie’s condition gradually deteriorate has a way of stealing the little bit of hope that helps us get through each day.

Sophie now requires a wheelchair to get around. With handholding and a whole lot of prompting, she can still walk from the couch to the bathroom, but not much further. The weakness on her right side is more significant. She is unable to use her right hand and has very little use of her right leg. Her headaches are more frequent and she continues to vomit every other day or so. Her left eye is now crossed, she’s been drooling, and her weight is up to 54 lbs. As if this was not enough, we noticed that her speech had become more slurred and she was having more difficulty chewing and swallowing during the last week or so. Her appetite remains more-than-good, so we have been cutting her food into smaller pieces and encouraging her to take small bites and to slow down.

We have to assume that the tumor is progressing. Our last MRI did show new tumor enhancement, but because we were only 10 weeks post radiation, the oncologist stopped short of saying that the tumor is progressing. He did say that there was still a chance that the symptoms were due to radiation swelling and that we could still see an improvement. That was 4 weeks ago.

Given Sophie’s situation and the unacceptable prognosis given by conventional medicine, we have decided to pursue an alternative treatment. We are now in Tulsa, OK where Sophie will receive 36 consecutive intravenous treatments. We have been staying at a not-so-nice Day’s Inn, but will move into an apartment today.

The decision to pick up and leave was made quickly. My aunt Diane had done a lot of research about alternative cancer treatments and attended a conference in Florida 2 weeks ago. She found the only clinic in the U.S. that would administer this alternative treatment on Monday and after a 12 hour day of travel, we were in Tulsa by Thursday. Sophie has completed 4 treatments with her first treatment given Friday morning. She is tolerating the treatments well. The side effects are minimal, and more importantly, non-toxic. The lady that runs the clinic has done so legally for the last three years and claims to have successfully treated hundreds of cancer patients. She has treated 8 patients with glioblastoma eradicating the tumors in all but 1 patient. While a glioblastoma is different than a pontine glioma, they are both gliomas.

I was more than a little skeptical when I walked into the clinic Friday morning. It was nothing like St. Jude. But as I listened to the clinic’s director and talked with some of the other patients, I realized that maybe there is still hope. Maybe when we go back to St. Jude on September 4th for Sophie’s 4th MRI the tumor will be gone. Maybe we’ll wake up from a 6 month nap and this nightmare will be over. Or, maybe this is a fleeting hope and soon we’ll all come back to reality. Either way it’s hope. And hope is what helps us get through each difficult day.

We have managed to have some fun as a family since our last post. We went on a Disney Cruise a couple of weeks ago thanks to the Make-A-Wish organization. What an outstanding organization. Sophie had a great time. She loved getting her pictures taken with the characters, especially Minnie Mouse. She insisted on giving Minnie and the other characters gifts every time she got her picture taken with them. So each day we would visit the Disney Store on the boat so Sophie could by the gifts. By the end of the cruise, the characters were so touched by Sophie’s generosity, they wrote her personalized thank-you notes. It was a great trip and for a few days we escaped the reality of our situation. Sophie has been talking a lot about her next Disney Cruise, and she is already looking forward to Halloween and Christmas. We are anxious to make these days a reality for her.

I want to say thanks to my dad and brother for organizing the golf tournament in Michigan. I think it was much bigger than either expected, but they did a terrific job pulling it off. I also heard that the bowling event in North Olmsted was a huge success. Thanks to Niki Haag for all your hard work and generosity. The support we have received and continue to receive from friends, family, the community, and even complete strangers has been incredible. Again we say thanks.

As most of you know, little Maria McNamara lost her battle with this horrible disease on July 14, 2007. On July 18 we attended the funeral services, and reflected on the fact that exactly 10 years ago we were preparing for our wedding rehearsal. Who could have predicted our situation and the people we would meet because of it; this tumor is vicious, and has a way of taking the wind right out of your sails. Maria was a brave and beautiful little girl whose legacy will continue to grow through the Prayers From Maria foundation. The foundation was created to help families find cures. Maria and her family helped us more than they will ever know, certainly more than can be articulated in a blog. You can visit Maria’s foundation at www.prayersfrommaria.org

Your support and prayers mean a lot and help us through each day. Pray that we made the right decision in coming to Tulsa and that Sophie responds well to the treatment. Keep the faith, and help us continue to pray for Sophie's miracle.