I remember driving by this one building years ago thinking it looked like Leggo blocks. It was so colorful and the architecture was neat. It wasn’t like anything I’d ever seen before and it was perched right on the hill so you couldn’t miss it when you drove by.
Funny how a building can mean so much to you 12 years later…
I’ve hesitated to blog or talk about this for a long time. This whole topic makes me uncomfortable, and I wasn’t really sure I wanted to discuss it out loud. Do you ever feel like if you bury something or not talk about it, it might just go away…?? I don’t know if that was how I was feeling, or maybe I was just scared to discuss it out loud because it became more real…?? Close family and friends knew what was going on, but it was tiring having the same conversation over and over. It just seemed to bring up more questions, more worry and more doubt every time.
As I blogged last year, Alexia was born with an SCT (Sacrococcygeal teratoma). To refresh your memory an SCT is an unusual tumor that, in the newborn, is located at the base of the tailbone (coccyx). This birth defect is more common in female than in male babies. Although the tumors can grow very large, they are usually not malignant.
Well… since we don’t do anything easy or uncomplicated in this household, Alexia’s tumor had a malignant component. At 1 day old they performed surgery on her frail little body and we waited to hear if she needed chemo. They were confident they got everything, but with her being so tiny they could not be sure. She went from weighing 4lbs 2oz to a mere 3 lbs 8oz. The tumor was significant and it left her tiny little body so vulnerable. It also left her with a scar that spanned her entire backside.
Alexia’s always been tough, 1 day after surgery we found her propped up on all 4’s in her incubator. Her strength and tenacity was incredible – she was 1 day old, hopped up on pain meds and trying to break out of NICU. Nothing could keep this girl down and I could only thank the lucky starts she was born with this type of tenacity.
The area after surgery was never symmetrical or proportioned. We knew at some point she was going to need reconstruction surgery, but when the area started to change and grow a few moths ago I pushed for some hard answers. At first we were brushed off saying that the area will level out. Then it was “its just fluid”, “its just swollen” and it will go down, or “she will grow into it”. When I got back from Phoenix our pediatrician confirmed my thoughts – he said it had grown significantly and urged me to get oncology involved asap. Cancer is typically measured by a marker. With her type we did a monthly blood draw for her “AFP” and that number was decreasing. On paper everything looked fine with Alexia, but that does not mean a re-occurrence cannot happen. Blood alone will not catch everything – you have to be diligent and trust your instincts.
Next thing you know I’m meeting with oncology a handful of times, surgery team and then a string of ultrasounds, MRI’s and appointments followed. Alexia had her MRI yesterday and it confirmed there is indeed a mass. She is now scheduled for an urgent surgery next week and I am really not sure how I feel. Equal parts fear, equal parts confidence (if I’m not confident who is going to be?!!) and equal parts sadness. Why was my little girl dealt this hand of cards. She is the light in a room – her smile could melt you on a bad day. She really didn’t deserve this. It breaks my heart knowing what she is going to have to endure next week. He sweet innocent face makes me want to hold her day and night and wish this all away…
My Life. My Journey. 
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