I am probably including too many details as I tell you how THREE CROSSES came to be, but two things - 1. giving details when I describe something is common for me (sometimes it is a good thing, sometimes not as it can take me a while to get to the point) and 2. it's important to describe the general situation so you can understand what our lives were like. A few of you saw how the situation existed in our lives, but there were emotions and thoughts that I kept to myself (for the most part) that will unfold.
Another note: A lot happened during this time of our lives. So the sequence of events or ceratin details may be off a bit but the general drift of details is accurate. For instance, I am almost positive that we had the blood tests at Children's Hospital (from here on referred to as CH) so that once we arrived at Milton Hospital to meet with K's (my daughter) PCP, she had the results in her hands. But it is possible that she ordered them at Milton and then we met with her. I may have some medical details incorrect as well, so for you med buffs, I apologize for any misinformation. I took in a looooot of information during this time and not all has retained in my memory. This is not a medical journal but rather a writing journal - please keep that in mind. And I will relay this story as if everything I say is what actually happened rather then let you know when I have times that I can't recall accurately. So did I disclaim enough? On with the story...as I remember it.
As I was saying...almost immediately K's PCP told me that we were likely not looking at leukemia. That was a huge relief as I had spent the last couple of hours waiting to hear that my precious daughter had leukemia. So that fear out of the way, the question was, what the heck were we looking at? It was not something the PCP had seen before. She talked with us for a bit about the prelimianry observations and decided that meeting with an orthopedic was the best course of action.
Within two days, we met with the orthopedic who ordered an MRI. K had the MRI (she did awesome with it and gave me courage when a couple of years later I had one and was anxietied out over the close quarters). We were told that we would be contacted regarding the results. So we drove home, only about 1/2 hour drive from CH. We pulled into the driveway and remember it was late June, a time when the sun is still out until 9ish. It was dark out, so although I don't recall the time, it was late. Once in the driveway, I realized that I had a voicemail (must have had the radio too loud to hear my phone ring). It was the orthopedic - please call him back. I reached him right away. We were to head back to CH with a bag. He gave me a quick version of the situation and all I recall was the sensation of being swept into a tide. I knew I had to move and act but I also knew I needed to put into place a few things - call work, call K's dad, take care of the dog. I had even asked the orthopedic if we could wait until the next morning to be admitted. Suffice it to say, we were admitted that night, about an hour or so after we had just left. My brain was trying to make sense of this. It was an infection called discitis which is exactly what it sounds like, an infection in the discs of her spine (2 disc to be exact).
The point of telling you all of this is to simply let you know that we were being swept into something we had never heard of before, something that we had no idea what the outcome would be, and something that was so urgent that we had to respond to it immediately. My logical brain went into gear and I faced the next few months with that mentality. I literally pushed the fears aside and squashed them anytime they reared. That little voice of paranoia that any parent would hear was dismissed, because I refused to go there.
K received a PICC line, a several day stay at CH, and weekly visits from a nurse. Off to home we went. I became K's home nurse, administering antibiotics through her PICC line. If you have ever done this, you know that there is a sequence vital to administering the meds and saline and heparin. I tried not to think about the PICC line that traveled up her arm vein and down into her chest cavity. I was confidant that this course of action would clear out this infection, as was everyone else, as far as I could tell. And for a while, it looked to be the case. We were wrong. It wasn't that the diagnosis was wrong or that the course of action was wrong. It was that something happened that none of us predicted.
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