MONDAY, December 12, 9:30 AM
We find ourselves at Lurie Children's Hospital first thing Monday morning for Billy's scheduled PET Scan. We were so happy that he was feeling well enough in his recovery over the weekend (Tonsillectomy 12/1) to play outside in the snow for a few hours and participate in our neighborhood sleigh ride, as well. We hold on tight to the hope that the secondary pathology tests are, in fact, accurate and the entire ordeal would be over that very afternoon. Billy Boy is is good spirits going into the test and engages the various medical professionals as they introduce themselves at the hospital, one at a time, throughout the morning.
For the PET Scan Billy is injected intravenously with a radioactive glucose. This test is used to determine cancers based on the uptake of those sugars by the cancer cells present. Results of this kind of test would take 24 hours. Billy is familiar with the IV procedure because he had a CT Scan with contrast the day before his tonsil surgery. He handles it bravely and we are able to accompany him to the imaging room. The technician explains the procedure to us and we are asked to step out during the actual scan. The scan takes 45 minutes to complete. We sit and visit with our oldest son, Johnny, who has walked over to the hospital on his lunch hour for a bit of moral support. After the test the three of us take Billy to his favorite place to eat...Portillo's...and head back to the burbs to await the call from his surgeon with the University of Chicago pathology results. Remember, once the secondary test results from Billy's tonsillectomy came back negative for lymphoma on Friday his slides were sent to the University of Chicago for a second opinion. Those tests were promised before noon but we'd yet to receive a call with the results.
By this time we are extremely anxious and have placed several calls to inquire about the pathology results. Finally, at 9pm Billy's surgeon phones. I remember I grabbed the phone and ran to a quiet place so I could hear every word. I find myself sitting on the stairs holding my breath, my husband at my feet, listening as she explains the findings. Billy Boy DOES have lymphoma. My heart sinks. How could this be? I am in disbelief. I whisper her words to my husband as he takes in my reaction with fear in his eyes. He is devastated. I tell the doctor we need to know MORE. We had done so much research the last many days that I desperately begged her to give me MORE information. What KIND of lymphoma I'm asking over and over. We had learned there are so many types and sub-types of lymphoma and we knew his future depended on what type EXACTLY he had. She was unsure, she remarked...as it "isn't her area of expertise" but I pushed her to please give us SOME details as to the TYPE of lymphoma the pathologist referenced in his report. She said there were notes in the report naming B-Cell lymphoma and Burkitt's but she couldn't offer anything more specifically about his diagnosis. I hang up the phone and we are googling these lymphomas within seconds trying to find comfort in the words on the screen. We learn that while B-Cell lymphoma is very common, making up 85% of all Non-Hodgkin's cases each year, a Burkitt's diagnosis looks very different. I place a call to cousin Lee as he has been tuned in from the very beginning. He reassures me that if Billy has Non-Hodgkin's Lymphoma that falls in the B-Cell category his prognosis would be very good. He insists this type of cancer is very treatable and that our Billy Boy will be beat it. We share the news with Billy and the rest of our children and begin to process what this will mean for him and for the entire family. We feel incredibly blessed to have so much love within our own family and we let that comfort us as we encourage each other about the walk we are about to take with Billy Boy. And while I have NO clue what our son is about to encounter I try to remind myself a familiar adage I've clung to for years...blessings sometimes show up in unrecognizable disguises (-(Janette Oke).