Kennedy.

I've been meaning to write this since its all happened, but I haven't found the words. So much has happened to sweet Kennedy in her short life and this is a place I can document it all. I don't want to forget any of the details. When Ken was 5 months old we felt a bump. At first it was only when she was in certain positions we could feel it, we thought maybe it was a rib or something else, we didn't think much of it and at her 6 month well check up her pediatrician didn't think much of it either. So we all decided to keep a close eye on it. By the time her 9 month visit had come up it had doubled in size, it wasn't just visible in certain positions, it stuck out of her back at all times.



The first step was an ultra sound, which showed it was a hard mass that would need to be looked at closer. Next came the MRI, which she would need to be put to sleep for, and fast before. After the MRI the doctors were confident this mass was a "fibrous harmatoma of Infancy" it would need to be removed, but it was benign and would cause no other issues. We were ecstatic! Surgery was scheduled and then this would all be behind us. No more worrying!



Then surgery day came, right after her first birthday. Nobody can ever prepare you for the feelings you will have handing your infant over to strangers to operate on. My heart broke but my faith was strong. I was just so thankful that this whole nightmare would be over soon. Between the check ups, ultra sound, MRI, surgeon appointments, Kennedy was developing a fear of doctors and there was nothing I could do to help that.




The surgery went as well as they'd hope, her surgeon was confident they removed the whole mass but informed us she had called in pathology to take a second look and we would be hearing from them shortly. We were instructed to keep her dressing on for one week then when we removed it all would be well and everything would be cured all would be well.
Unfortunately it didn't happen that way. 1 week later we took the dressing off to find her back irritated and swollen. After another appointment with her surgeon and one more ultra sound it was confirmed it was liquid her body had sent to her back to take place of the tumor. We were told to keep her whole mid-section wrapped in an ace bandage to apply pressure and "maybe" her body would take care of it on its own..


Again unfortunately it didn't happen this way. Another visit with her surgeon and she was scheduled to be put to sleep to have this liquid drained. This time, it was a very simple procedure. So quick we were in the room with them. The anesthesiologist put her to sleep so her surgeon could take a syringe to suck the fluid out. But she wasn't all the way asleep, she was crying, and afterwards she got sick from the anesthesia, this was one of the hardest days for me. Around this time we got a call saying they were wrong. Her tumor wasn't a fibrous harmatoma of infancy. Instead the pathology came back reporting this was a gardner's fibroma and she would need to see a geneticist for further testing. WHAT?! We had no idea this was even a concern. Shock & fear were all I felt.


They were concerned she might have gardner's syndrome. Which almost always results in colon cancer, increases the risk of childhood liver cancer, and increases the odds of other potential problems. By this time we had been believing this tumor was nothing for 3 months, our world was changed. Now it was fear. All the time.
Within the week her back had filled back up with fluid, despite keeping her wrapped in an ace bandage for close to 3 weeks. So another surgery was scheduled, this time she would have to have a drain inserted into her back, that would need to stay there for 7-10 days.



The day of her last surgery came and we were so happy to have our girl healthy again. While she was in surgery we got a call from her geneticist that they received her results and she tested NEGATIVE for the genetic defect they were looking for. Again we were ecstatic!! We knew God is good! The power of prayer worked for us and we were so thankful that our child was, indeed, a healthy little girl who wouldn't have to battle an ailment her whole life.

After her drain was inserted we monitored it for a week then after we got it taken out our girl was a new toddler. Gone was her crying, colicky, cranky days. She smiled now and even laughed!
Some days I think back and I'm not sure how I made it through all the worry I felt. But when I think of how lucky we are all i can feel is blessed.
Now fast forward, 3 months later, Kennedy is playing and I notice a bump on her back. Panic is all I can feel..
Because what I didn't mention above is 20% of kids with Gardner's Syndrome test negative for the genetic defect, but have it anyway.. We ignored that statistic. There's no way our child is in that 20%. She tested negative, so she doesn't have it. But thats not true. And now that i've found this bump that statistic is so real.
After consulting her pediatrician we'll be keeping an eye on this new bump. Watching to see if it gets harder, bigger, or more pronounced. The good news is it's in the same place as a muscle, it could just be that muscle bulking up. Or it could be something else entirely. Only time will tell. So for the time being I'll continue praying for my sweet girl.




Now.