First of all, we want to thank everyone for all the prayers and support. We can not tell you how many phone calls, emails, meals, gifts, and most importantly, PRAYERS that we have received.
Thank you everyone. Just the support from our friends, community, St. Raphael's, neighbors and family in and of itself is a true miracle. THANK YOU, THANK YOU, THANK YOU!!
We are truly counting on Mother Teresa to provide us with a miracle.
Here is where we are as of the end of today.
1. Maria loves connect the dot books and crafts.
2. She loves her brothers, her friends and most importantly, her mom. She gets mad at her dad for everything else. She is on a heavy dose of steroids which makes her really hungry and sometimes cranky. But that is what dads are for.....to lean on when they need a shoulder to yell at.
Monday Maria and Dad went to meet with Dr. Stewart Goldman at Children's Memorial Hospital in Chicago. Dr. Goldman has an open spot on a Clinical trial that works with Thalomid and Carboplatin. Dr. Goldman's study is considered a Phase II study in the PBTC.
So, let us explain that in real simple terms. First of all the PBTC stands for Pediatric Brain Tumor Consortium. This is a group of 12 hospitals that share ideas and clinical trials throughout the US. It is headed up by St. Judes in Memphis, TN. There is another group called the COG (Children's Oncology Group) that also does clinical trials. All 12 hospitals in the PBTC are also part of the COG. There are about 200 hospitals in the COG.
Clinical trials are set programs that test different types of drugs/therapy at different types of levels to try and find a cure. The key word is trial. Maria has a very rare brain tumor and as of today there is no known cure. The average life expectancy is about 12 months.
So, as parents that love her more than anything, it is our responsibility to pray a lot to God and try to find a clinical trial (study) that may give us more time or a cure for Maria. (We are confident that Mother Teresa will pull through)
We have spent the last 9 days talking to every doctor we could. The end result is that we are trying to get Maria into a Phase II study. (there are no Phase III studies out there because that is closer to a cure and we just aren't there yet).
The problem with studies is that they only allow a certain amount of patients and then they close the study. This is where many problems come into place. After doing extensive research, we found 2 or 3 studies that we feel gives us a better chance than the others. We have since spent about 5 days just trying to get into one. After realizing that we can not get into the ones we wanted, we then had to call all these famous doctors back and ask them if they would still do the study, but just not an official one.
That is what we are trying to accomplish. We found a few that will use a "study" protocol without actually being in the "study". This is good and bad. Not being in a study is not good. Getting Maria the newest treatment may be great.
Some more bad news, the Cleveland Clinic and University Hospitals do not officially do "studies". For those "experts" out there, I want to be more clear. What I mean is that neither hospitals are certified as a Phase I, II or III facility. They can, under certain conditions provide the actual study locally if the study chairman allows it. They can in some cases just try their own...
So where does that leave us today. We are narrowing it down to two options, Duke Cancer Center and St. Jude. Duke has already agreed to provide a Phase II study with the drug that we want. Basically, doing the study outside of the official study. St. Jude is thinking about it.
We hopefully will know these answers tomorrow. We are supposed to leave to Duke tomorrow for a visit on Thursday, but we do not know if we are going until we hear back from St. Jude and we make our decision.
Hopefully this gives you some ideas of what we are trying to accomplish.
Thank you everyone who has answered the research questions. They have been very helpful. Three more will be published tomorrow.
The email address in the research request goes directly to us, so if you need to reach us and don't know our number or just don't want to call, please email. Just keep one thing in mind. We get over 50 emails a day and it is hard to respond to all of them...but we try.
We will try and post something every other day in the beginning until we get situated and then probably weekly.
Please keep the prayers coming. It is the prayers that keep us going.
Ed and Megan