Zoe's Nine Months Old!! Her First Portraits Since Surgery!

Thursday, October 8, 2009: Affirmations for Zoe

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.

As for me, I am going to explore this positive thinking and law of attraction think a little farther. Years ago (even before the Secret), I listened to a CD called Prosperity Conciousness. It was about how your thoughts could affect your financial situation. It was something that made sense to me and I wanted to explore these points more. Even before then, my dad had read a book called, Riches Within Your Reach." It was along those same lines. One of the most important points of this CD was affirmations. So I have decided that I am going to write down affirmations for Zoe and read them everyday. I encourage you to do the same. You can either write your own or use mine. Basically, what we are doing is retraining our subconcious to think positively.

My Affirmations for Zoe:

1. Zoe WILL live!!
2. Zoe's tumor will NOT get any bigger!
3. Zoe's tumor WILL shrink to absolutely nothing!
4. I will NOT lose my precious little girl!
5. Zoe will NEVER show neurological symptoms!
6. At Zoe's next MRI, her tumor WILL be smaller!
7. Zoe WILL be a normal child.
8. Zoe WILL be in the 10% that live past two years.
9. Zoe WILL be a miracle baby!
10. Zoe's doctors WILL be amazed at how her tumor disappears!
11. We WILL make the right decision for Zoe's care and treatment.
12. This illness is NOT anyone's fault.

I'm sure that many more affirmations will be added to this over the next weeks and months.

These can also be said as a prayer. Please affirm the points with me daily and feel free to add your own. I know that there is power in positive thinking and in prayer.

Tuesday, October 6, 2009: Headed in the Right Direction

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!!

Sunday, October 4, 2009: A Miracle

Zoe was dedicated this morning at Mom and Dad's church, Grace Fellowship. It was a very moving service. We are definitely due a miracle and I think that we are about to get one.

The Parable of the Weeds

When we went to the ER at Scottish Rite on Saturday night of last week, my dad prayed hard for something that he could hold on to for Zoe. Here is the verse that he was given. It is called the Parable of the Weeds.

The kingdom is like a man who sowed good seed in his field. But while everyone was sleeping, his enemy came and sowed weeds among the wheat, and went away. When the wheat sprouted and formed heads, then the weeds also appeared.

The owner’s servants came to him and said, “Sir, didn’t you sow good seed in your field? Where then did the weeds come from?”

“An enemy did this,” he replied.

The servants asked him, “Do you want us to go and pull them up?”

“No,” he answered, “because while you are pulling the weeds, you may root up the wheat with them. Let both grow together until the harvest. At that time I will tell the harvesters: First collect the weeds and tie them in bundles to be burned, then gather the wheat and bring it into my barn” -- Matthew 13:24-30

Interpretation of what this means for Zoe coming tomorrow. I'm too tired to type it out right now :-)

Tuesday, September 29, 2009: Baby Steps

Last night was ROUGH!!

Zoe is still off of her schedule in a massive way. She was up until around 3AM. Not because she was upset about anything but because she thought it was playtime. I must admit that it was difficult to be upset about being awake when she was being so sweet. She would roll over onto her tummy and look up at me and smile and laugh. I'm not sure I would have traded that time for all of the sleep in the world. However, things did get very tough as I was sitting there watching her. I think I was too exhausted to control my thoughts and they began to run away with me.

I sat there watching her and crying.

I have faith that we will take the correct path and that she will be healthy, but I am still scared. I suppose it is just human nature to question ourselves and the decisions that we make. The "what if" game is a deadly one to play, but yet we still insist upon playing it. I don't want to play the "what if" game with Zoe. Heaven knows, I have already played it enough. What if I had noticed sooner? What if I hadn't decided to take her that day? What if she had had a seizure that had cause irreparable damage? Once more, I'm asking myself questions that will never be answered, can never be answered. Will I ever stop asking myself these questions? Or is that just another unanswerable question? I can only hope that one day questions will no longer be necessary.

I know that when we make the decision for Zoe's course of treatment, I will continue to question. Have I chosen the right path? Will this enable her to live a long and full life? Questions that one day can be answered and I can only hope and pray that the answer to both questions will be yes instead of no.

We continue to research varying treatments and I am sure that we will become better informed as the days and weeks pass. In the meantime, we are continuing to do all that we can to keep the bad stuff out and put the good stuff in.

I read an email to Tonya today about B17, a vitamin that I have heard the benefits of many times before now. I have been thinking of it ever since Zoe's diagnosis. However, I only know that you could eat apricot seeds and get it from there. But there is no way Zoe can eat apricot seeds!! She doesn't have any teeth! Fortunately, the email that I read today did have a link to a website where I can purchase it in pill form. From there we can crush it up and give it to her in her food. Or so we hope anyway! Fingers crossed! We are now searching to find dosing information for an infant.

Another decision made.

Lord may it be the right one.

How to Order Zoe's Ornament

Here's what you do to order Zoe's Ornament.

If you would like to order an ornament, please send me check or money order to 179 Shadow Lake Drive, Arnoldsville, GA 30619. Please be sure to include quantity and mailing address. If you would like to drop off cash, you may do so as well. As soon as I get your order I will send it to South Carolina. You can also order them at the Natural Baby in Watkinsville! When they are being carried at other stores, I will let you know. First come first serve so get them today!