Zoe went to the neurologist and oncologist today. Dr. Brahma (the neurologist, did I mention he's HOT!! :-) said that she is looking great and that the shunt is working properly. He also said that he reviewed the CT scan from when Zoe went to the ER last Saturday. It showed that the fluid spaces are almost gone and the brain is filling those in like it should. Also, Zoe's head has decreased in size from 19 3/4 inches to 19 inches, a vast improvement!
Zoe also saw Dr. Claire today. We spoke a lot about different alternative treatments that we have been researching. It seems like Sean and I will be flying to Utah to consult with
the nutritional doctor there in the next few weeks. She has had very good results in the cases that we have found. Dr. Claire said that she could find nothing harmful in anything that she did and that she does seem to do her homework thoroughly.
The Burzynski Clinic in Houston is out for now. It seems that the claims of low side effects are not so true. Dr. Claire said that she has had several patients go there over the last 20 years and all of them have had seizures while on the IV formulation. That is certainly something very scary for me! She said that she had one patient on 5 different meds to control them and they were still uncontrollable! I can't rationalize taking a baby that is not sick right now and putting her through that. Too much can happen with seizures. Also, she stated that patients had to be put on medication that causes rapid weight gain. That is another thing that I don't want Zoe to have to go through. What is the point of fixing one problem only to open her up to dozens more?
I want Zoe to be able to have a happy and full life, even if it is shorter than I feel it should be. I don't feel it would be fair to lengthen her life if she is just going to be sick the entire time. With that said, if Zoe starts showing neurological symptoms, Burzynski treatment will certainly be considered as an alternative to radiation. We know that the radiation only lengthens life by a few months. At least with Burzynski there is the possibility of long life.
But that is a bridge that we will have to cross if we get there. Until then (and we are convinced then will never happen), we are going to continue the supplementation, diet, and detoxification route.
I've really been trying to keep a positive attitude today but it has been tough. I want to think that Zoe is different. I want to KNOW that I am going to hold her hand on the first day of school and smile proudly when she graduates from college, but sometimes I falter. I suppose that none of us truly know that about our children. Life is so fragile and uncertain that we can't possibly know anything for certain. But the possibility of that not happening stares me in the face daily. Today, the probability stared me in the face. The fear crept back in as Dr. Claire was talking about survival rates. Only 20% of children diagnosed with this type of tumor live one year past diagnosis and only 10% survive past two years. I feel confident and at peace that Zoe will be in that 10% but even that confidence can crack sometimes. I just remind myself of the kids that are eight and ten years out from diagnosis and are either tumor free or no worse than they were at diagnosis.
Zoe has another MRI in six weeks. I am certain that the least we will see is no change, if not an improvement, however slight. But every day, I still catch myself looking for those neurological symptoms, questioning my belief that they will never begin. Are her eyes closing fully when she sleeps? Is her balance trouble when sitting caused by the tumor or is it normal? Why isn't she crawling? I ask these questions even though she passed her neuro exam with flying colors, and even though I know other babies her age that don't sit all that well and aren't crawling. I suppose that it is only human nature.
I did read something today in Dan Brown's, The Lost Symbol, that made me stop and think. It was about the power of the mind, specifically about how powerful many minds can be when they are all focused on the same goal. Here is the passage:
"In 2001, in the hours following the horrifying events of September 11, the field of Noetic Science made a quantum leap forward. Four scientists discovered that as the frightened world came together and focused in shared grief on this single tragedy, the outputs of thirty-seven different Random Event Generators around the world suddenly became significantly less random. Somehow, the oneness of this shared experience, the coalescing of millions of minds, had affected the randomizing function of the machines, organizing their outputs and bringing order from chaos."
Did this really happen? I don't know. Could this just be something Dan Brown imagined because it would make an entertaining story? Quite possibly. I most certainly intend to find out. True or not, though, I certainly believe in the power of the human thought. The Bible stated that with the faith of a mustard seed, we could move mountains. Over the years, I believe that people have come to see this as a metaphor.
I don't.
I believe that we have certain mental powers within us that we no longer use to out full capability. The subconscious mind is a powerful thing. It is not easy to train your subconscious mind to think positively all the time, but it can be done. I will begin today to train mine. I will no longer let the fear creep in. I will no longer let the doubt overshadow the hope. it is my duty to my precious child to send positive and healing thoughts her way and the keep the "toxic" thoughts at bay.
But here is where I'm truly going with all of this. With so many people all over the world praying for Zoe and sending her positive thoughts, I believe that we actually hold the power to change the tumor, to make it disappear. I know if sounds a little cuckoo, but I know that there is a reason that I chose THIS particular book as the next book to read when I had twenty to choose from. I know there is a reason why I read that particular passage today after hearing those dismal statistics. I truly believe that God was telling me that we do have the ability to stop this tumor from growing. We do have the ability to shrink it to nothing. We do have the ability to save Zoe. And now I'm telling you; think positive and keep praying! We will prevail! We will save our little girl!!
We took Zoe on her first trip to Watson's Mill Bridge State Park today. She absolutely loved it. She enjoys the outdoors so much!! She has been doing really well lately and I think she is pretty much back on schedule and back to normal. 
Zoe turns 9 months old today. It is sad and happy for me; a kind of bittersweet. I am hoping and praying and BELIEVING that we will get to celebrate her 9-year birthday and that one day she will celebrate her 90th birthday. 
