Sunday, December 31, 2006
Merry Christmas and a Happy New Year to everyone!
It has been a month since we last posted. We have been busy. We have been spending a lot of time with our family this holiday and it has been great.
We have been very fortunate that Maria has gone a month without any problems. She had a great Christmas. We have been blessed. Maria has been in great spirits throughout this holiday season.
So many people have prayed and supported us and again we thank all of you. God bless you.
What have we been doing? Well, I am glad you asked. We have been doing a ton of research. We had some long and very informative conversations with some of the top doctors in this field. All of them continue to agree that this tumor is horrible and that there is no cure. (Really? Tell us something we don’t know.)
We studied extensively all the open clinical trials available today from the Pediatric Brain Tumor Consortium (PBTC) , the Children’s Oncology Group (COG), and the National Cancer Institute, just to name a few.
We decided to look into the PBTC – 0022 study which works with Avastin and Irinotecan as the next treatment for Maria. We talked with Dr, Gajjar at St. Jude and the study was not open there and would not be open until the end of January. We discussed getting started right away so we elected to go to the closest location that had the study open. That was Children’s Hospital of Pittsburgh. (It is very disappointing that the Cleveland Clinic and University Hospitals are not part of the PBTC and are not a Phase I or Phase II hospital in the COG. In other words, Cleveland is way behind the eight ball when it comes to pediatric brain tumors.)
So, off to Pittsburgh we went on December 21, 2006 for another MRI and possibly a PET scan and to start the Avastin treatment on Friday December 22, 2006. We met with a wonderful Dr. Reggie Jakacki. She is actively involved in the PBTC and knows Dr. Gajjar very well.
We discussed Maria’s condition and what effect the Avastin study would most likely have on Maria’s tumor. She confirmed what Dr. Gajjar had told us 3 weeks earlier, that it may give us a month or two more, but we should expect much more.
So, off to the MRI we went. Our appointment was at 10:45 am at the Presbyterian Hospital (connected to Children’s). It was at this point that we really missed St. Jude. Not only could Maria not eat a thing until her MRI, but they were running 2 ½ hours behind. How could someone be 2 ½ hours behind at 10: 30 in the morning????? Nevertheless, Maria was great and waited while drawing with mommy. After our MRI, we were to return to Children’s to discuss the results and the next day’s treatment and pending PET scan.
During the scan and weeks prior to this day, Megan and I have discussed every option and every scenario we could think of when if comes to Maria’s treatment. We have always wanted to make sure that quality of life for Maria is our number one priority. We had learned that this study was probably the best study of the ones currently available and that is why we were in Pittsburgh, but not being at St. Jude made a huge difference. Maria had become a patient and was no longer a child. Now, don’t get us wrong, they treated us very well at Presbyterian, but it wasn’t anything like the sedation team at St. Jude.
Some people have asked us how we could pack up our family and move to Memphis, TN for two months of treatment. Well, it has never been clearer. NOTHING CAN COMPARE TO ST. JUDE!! I could go on for hours discussing the differences.
Back to Children’s……4:30 rolls around and we return back to Children’s Oncology. We meet again with Dr. Jakacki to discuss the results. She said that it doesn’t look like the tumor has grown much if at all since the MRI 3 ½ weeks ago. This was great news.
We continued our discussion, only this time we spoke. We explained to Dr. Jakacki that though the treatment is supposed to be somewhat beneficial, we couldn’t justify to Maria and ourselves the gain. Irinotecan could cause hair loss, tumor hemorrhage, extremely low red and white blood cell counts. Why would we take her for a two hour ride 2 days every two weeks just to be in a strange place, get poked, prodded, touched, questioned and made uncomfortable for what is maybe an “extra month or two” of life. If you add all the days up of being in a hospital as a patient and not spending time being a child with your family, is there really a gain?
So, we left for home to enjoy a great Christmas. And Maria was happy again. And so were we.
So what is next you ask? Well, I’m glad you asked. We are not giving up. NO WAY. We continue to educate ourselves on all possible alternatives and are looking for the best options. We remain VERY hopeful and are trusting God to guide us.
We have looked at many things but we haven’t read or looked at everything. One thing that we really appreciate is when people email us or post information. Please don’t assume that we have everything or know everything about possible treatments. Assume we know nothing. Please continue to send information to us.
A perfect example is Dana Farber. We had a contact at Dana Farber and we talked with them when Maria was first diagnosed. The difference was we didn’t get to the top doctor at Dana Farber. Thanks to someone like you who really cares, we were able to get a meeting to discuss a lot of options for Maria. It was very helpful. Not to mention, we got to take Maria on a quick little trip to Boston for a fun evening of shopping with mom and dinning out with mommy and daddy.
If anyone knows someone at MD Anderson that would return a phone call, that would be great. We have called 4 times with no response. We just want to know what they are working on.
We would like to thank Dr. Gajjar of St. Jude for always being there for us. He is truly a great man. We would also like to thank Dana Farber, Children’s National in DC, Children’s Pittsburgh, and Children’s Memorial of Chicago. We appreciate everyone’s time and we will continue to keep in touch. Someone’s going to find the cure….soon.
Here is a tough question for you to think about. What do you say to a six year old girl that asks you if she is going to die and then tells you she is afraid to die because she doesn’t want to be without her mommy? Keep in mind that Maria still is not aware of her prognosis. How do you tell your six year old daughter what the doctors have said?
Please continue to pray for Maria and her strength. She is our miracle that is touching so many lives.
Thanks again for your support and may God Bless all of you.
Ed and Megan