How did we know?

Many of you are asking, “How did you know?” What happened? I will try to give you he condensed version. Tuesday morning, Sophie threw up immediately after eating her breakfast, this was the 5th time in about 10 days, but since she had no other symptoms and the vomit looked like mucous I chalked it up to drainage… We cleaned her up; she said she felt better, so we went to preschool. When I picked her up from school, her teacher said she seemed a little, “off” something else we had been noticing but again, chalked it up to growing and what we thought might be considered “normal” for a three year old. Hindsight is oh-so-wonderful, because looking back, there were many symptoms (which again we didn’t think were that out of the ordinary) that started showing in November which progressively got worse as time went on. Thing like getting out of bed many times each night (probably due to headaches which she didn’t know how to verbalize), the occasional clumsiness, not wanting to dress herself anymore, moodiness, not wanting to participate in her activities, wetting the bed a few times, and most recently drooling, and on Saturday, not being able to smile on her right side. This past Monday Marc took the girls out to breakfast so I could get a break for president’s day and when they came back Sophie’s knees and pants were all wet from the snow. When I asked what happened, Marc said she fell and was having trouble walking. So with all the events that happened from Saturday (smiling) to Tuesday at school we immediately called the doctor, went to our pediatrician who took notes and did an exam. He said he was extremely concerned, and sent us to the hospital ER for a CT scan. 15 minutes after the scan, the neurosurgeon came in and said the news was not good, and gave us a “not 100% diagnosis” of an intrinsic tumor and then ordered an MRI to be certain. You know the rest of the story. All the signs we didn’t think were that big of a deal proved to be indicators of the tumor – which we are told is probably slow growing due to the gradual onset of the symptoms. From what I have bee told, most children with a brain stem glioma wake up one day, and have symptoms so severe that there is no question that something is SERIOUSLY wrong. I think it’s positive thing that Sophie’s tumor is most likely slow growing.

Our plan is to head to St. Jude’s sometime next week, get more tests, and begin a clinical study with radiation. IN addition, we will be starting some natural remedies in an effort to shrink the tumor as fast as possible.

I’m on a mission and I’m focused. Your kind words and prayers have helped. The tears don’t fall as easily. Yes I get sad, and still ask the question why. But that won’t help Sophie. We are lifted up in prayer because of all of you. I feel hopeful now that we have a plan, a plan that will give us more good days with Sophie, and possibly help any other families that may be given the same diagnosis. We are overwhelmed by the number of emails and posts, and offers to help. We appreciate those of you who offer to use your medical connections and experience to give us options. We are looking through everything and keeping an open mind, but are taking one step at a time. We thank God for all of you, our friends and family, for being here to support us, pray for us and help us in a million different ways. We are so grateful to all of you, keep the faith, and keep the prayers coming. Life is so precious.