It has been almost a week since we were able to post from the battle field. Maria and dad, as most of you know, are at St. Jude Children’s Research Hospital in Memphis, Tenessee. What most of you don't know is how we ended up here. So here comes the long story for those that want to know.
We spent over week researching about 30 different studies. A few of them were:
- Topotecan and G-CSF with radiation
- Temozolomide with radiation
- Arsenic Trioxide with radiation
- Thalomid and Carboplatin with radiation
- Gefitinib (Irrissa) with radiation
So, Dad and Maria took a trip to meet with Dr. Stewart Goldman of Children's Memorial Hospital of Chicago. He has a study that uses Thalomid and Carboplatin with radiation. He has tested 39 children and one is still living after 4 years, but the rest of the study is consistent with other treatments and shows no real cure or any great time extension of "quality of life". Dr. Goldman is a great man and truly wants to cure Maria's exact type of tumor. We felt very comfortable with him. We just felt that the chemo used was a little harsh with hair loss and 4 hours of treatments per day. It’s a great treatment by a great group of people but it was not a cure.
Knowing this, we continued our search and learned that several of these top doctors were thinking of trying a drug known at Tarceva. This drug, like many of the others in the studies listed above, has been proven to kill cancer in adults. We wanted to use it because we are looking for the cure. In discussion with Duke Cancer Center, they said that they would use Tarceva in what is known as a "non-protocol" study and that they are very confident that they know the appropriate dose levels to use. They also talked about using our case as a possible start of a new study. We were very excited about going to Duke. The medical team there of Dr. Friedman and Dr. "G" are world renowned.
The evening before we left and after the last post, we were able to talk with Dr. Amar Gajjar. He is the vice chairman of Pediatric Oncology for St. Jude. We told him that we have looked at most of the studies and that we wanted something more for our Maria. We wanted something that has a chance of being a cure, not something that has been proven not to be a cure. We told him that we were leaving for Duke in the morning.
Dr. Gajjar than went on to discuss how St. Jude is already working with Tarceva and that they know the dose levels for children. He also stated that they had not tried Tarceva on a brainstem Glioma (Maria's type). We discussed the "non-protocol" study of Tarceva and he told us that he wanted us to have the type of treatment that we felt most comfortable with. Knowing that St. Jude only works with children and that it is truly a place of miracles, we packed our bags on got on the next flight to Memphis. That was Wednesday of last week. After a lot of testing and planning and a wonderful and blessed trip home for Easter, tomorrow Maria will start her first day of radiation and Tarceva treatment.
There was a lot of other information that many people sent like Protocel, Cantron, Animal Venom, and more. Most of these are either "natural" treatments or "relapse" treatment. Both of which we can and may try. "Natural" treatments can be done at any time because the products are supposed to be all natural and shouldn't affect current medical treatments. The relapse treatments are used if the current treatment does not work or if the tumor starts to grow again after we shrink it. So if there is a relapse, there will be a lot more research that will need to be done. As you can see from this long post, we are consumed by the entire process.
We have to thank all our friends and relatives for all the medical advice and information that we have received. We are now experts in brain stem Gliomas.....Probably because we stayed at a Holiday Inn Express last night.
So, now let's get to the most important part of this posting - how is Maria?
Maria has been poked, prodded, stuck, pitched, scratched, and otherwise just hassled on a hourly basis. It really hurts. It hurts deep. It is hard to get up every day knowing that another test or doctor awaits her. But that is how her dad feels. Maria has been an angel through it all and has not cried once. She constantly makes every doctor smile and every nurse wishes she was theirs. She is an inspiration. She gives her dad the strength to continue on with the miracle. She constantly talks about her friends and cousins, but mostly about her brothers and mom.
She is excited to go swimming and to go to Disney when her treatments are finished. It is amazing what a 6 year old can teach a 37 year old.
We must say again and again that our community, neighbors, friends, and family have been so wonderful.
Thank all of you for caring. God Bless you.
Ed and Megan