Blogging is a new concept to me but I felt it was a good medium in which to keep everyone posted and allow me to focus my energy on “Sarah” and the rest of our immediate family. I use “Sarah,” her Hebrew name meaning princess, in the interest of keeping some anonymity as this is an open blog. I hope you understand if you have not heard from us personally but we are still trying to understand the events of the last few weeks.
Our journey begins just like the lyrics in Tom Petty’s song “the waiting is the hardest part.” For the last few weeks our 8 year old daughter “Sarah” has had some unexplained medical issues including a large swollen lymph node on the right side of her neck. Three doctors visits, one trip to the ER, two full rounds of different antibiotics, repeated blood work, and countless labs later we still had no answer and the mass was still there. I say mass because by now another lymph node was getting just as large as the first. During this time I made myself crazy, between the internet and my own medical knowledge (I should have finished nursing school) I was thinking the worst. Waiting for each test result was agonizing. On one hand I was happy when a result would come back negative, but on the other hand things were still unanswered. It was finally decided by all involved that a biopsy needed to be done. Even after meeting with the surgeon, the possibility was still out there that a virus (that did not show up on the labs) was causing this. I could only hope.
On Friday January 22, 2010, surgery was scheduled and a biopsy was done. Sarah was a real trooper that morning considering she was not very happy with the prospect of more needles. I am so glad that she had what I call “happy juice” before they started an IV and wheeled her into surgery. Sitting in the waiting room I thought out loud to my husband “did we put her through this for nothing? Should we have waited another week to see if it went away on its own?” My husband put my mind at ease. I thank God for my husband, his level headed calmer approach to the ups and downs in our life has always been a great source of strength for me. I had no idea how much I was going to need his strength that day. It seemed like we were waiting forever when the waiting room receptionist called me over and handed me a phone explaining that the surgeon was on the line from the operating room to tell me how everything went. I took the phone and the doctor proceeded to tell me how well it had all gone and that Sarah was in recovery resting comfortably and as soon as she started to wake we would be brought back to her. After knowing she was okay my next question was “In your opinion and experience how did it look?” The doctor answered me by saying he would have more answers in about 20 minutes after the pathologist had a chance to look at the biopsy, but it looked like a lymphoma. I thanked him for his candor and said we would see him later. As I hung up the phone my heart sank and I could feel the lump in my throat as I told her dad. My worst fears are coming true.
Back in recovery Sarah was given her own room unlike everyone else who had a curtained off area. I guess this was to give us some privacy as we were met by her surgeon and another doctor, Dr. L, who specializes in pediatric oncology. First thing I said was “if you’re here it’s not good.” I was right, it wasn’t good. The pathologist had looked at the sample and confirmed what the surgeon had seen, that it was “highly suspect for lymphoma.” What does that mean? I pressed the doctors to give me more of a percentage breakdown, something I could understand and explain to our family. 98% sure but further testing on the biopsy would be needed before it was 100%. In the mean time we were given information and an overview as to what to expect as well as an appointment to meet with Dr. L in his office once it was 100% confirmed. Dr. L took our number and put it into his cell phone so he could call us as soon as the results were in. The results should be in by Tuesday.
Question: is the waiting really the hardest part? Or what she faces ahead? And so begins Sarah’s war……………