September 24, 2009: The Beginning

Today, I decided to begin a journal. It will be a journal of my miracle baby. It will be a journal of miraculous healing that cannot be explained by modern medicine. This will be a journal of Zoe's winning fight with cancer.

Tuesday, September 22, 2009, started like any other day in my life. It was sunny, finally, for the first time in a week. Zoe had an appointment with her pediatrician. I was concerned with her protruding fontanelle and wanted him to check it out. We were all convinced that nothing was wrong with out perfect baby. We couldn't have been more mistaken. Maybe we just didn't want to admit that something could be wrong with her. Zoe's pediatrician immediately sent her to Athens Regional for a CT scan, thinking that she had hydrocephalus, a condition where CSF (Cerebral Spinal Fluid) is not draining properly from the brain. We were so concerned. We were given the information on treatment and it scared us.

BADLY!!

Little did we know what the CT scan would show. Zoe's pediatrician called me on the hospital phone and told me that Zoe has some type of tumor in her brain-stem. I was floored. How could my baby have a tumor? What if it was cancer? The diagnosis was that it probably was. No one should ever have to hear that their precious and perfect baby girl most likely has cancer.

We were just dumbfounded.

Thus started a journey for us. Zoe's pediatrician got in touch with Children's Healthcare of Atlanta and it was arranged for Zoe to be transported to Scottish Rite. I have never done anything more difficult than I did that night. I held my screaming baby tightly in my arms while they tried to start an IV for the third time. But, as they say, third time was the charm. I had no idea how hard things would get over the next few days.

We arrived at Scottish Rite that night exhausted and clueless as to what to expect. I spent a lot of time crying and holding my sweet girl, singing her favorite song, "Twinkle, Twinkle, Little Star." I kept running things through my mind. Why us after everything else we had been through? Why her? Why such a perfect little child? What had I done wrong? Was I being punished? All questions that could be asked but never answered.

I wondered every second if I was going to have to bury my precious little baby. I don't know how I could possible live without my heart.

The next day, Wednesday, September 23, 2009 started early. Doctors came and went. They measured her head and looked her over. Finally, we started to hear about what was going to happen next. They were pretty sure that they would have to place a shunt in Zoe's brain to drain the excess spinal fluid into her abdomen. She would keep it for life. Without it, the outlook was grim.

However, they weren't certain that Zoe really did have a tumor and would need an MRI to determine if it was. They were hoping for some type of inflammation or infection based upon the lack of neurological symptoms and Zoe's young age.

So at 10:30 AM that morning, the surgery went forward for the placement of the shunt. It was quick and Zoe was back in my arms after about 2 hours. The difference in her fontanelle amazed us all when we saw it. We kept asking ourselves how we couldn't have noticed sooner. But when you see gradual change every day, it just doesn't seem to register as quickly.

Zoe did fine after surgery and the MRI went forward this morning. Because they needed her to be absolutely still, Zoe was sedated. She had a rough time waking up from the sedation. It was something that had us all holding our breath. I was so scared when they called the doctor in to check her right after she came out. The relief was palpable when she started to stretch those little arms and open those bright blue eyes. The first thing she did was jerk the oxygen tube out of her nose and stick it in her mouth. :-)

We waited impatiently for the results. So in hopes that it wasn't cancer. But it is. Zoe has a diffuse intrinsic pontine glioma. A tumor has infiltrated her entire brain stem. It was like hearing the news all over for the first time. Except this time it wasn't a probably, it was certain. I was devastated. I just leaned into Sean and sobbed. I kept trying to figure out what I had done wrong. I had tried to do everything so right. I take my supplements. I had breastfed and am still breastfeeding. I only give her organic solids. I use all natural baby products. I even just spent $300 on an organic cotton mattress for her. But the bottom line was, I didn't do anything to cause this. It was just something that happened.

Zoe doesn't fit the bill at all with this cancer. She is so young. Quite possible the youngest ever. She has no neurological symptoms, and had it not been for the hydrocephalus no one would have known. Even the tumor doesn't act the same way with the MRI contrast dye as other tumors like this.

Her oncologist, Dr. Claire as she likes to be called, did give us hope. There are reports of these tumors that just disappear. We are determined that will happen with Zoe's. Or at least it will not grow.

We had already begun to give Zoe FuCoyDon, a seaweed supplement that contains polysaccharides to help break down cancerous cells and build the immune system, when we heard the news. Now we are on the warpath to stop this cancer naturally!! And Dr. Claire is right there behind us!