Shortly after Christmas our household started showing signs of the cold and flu that have hit the greater Seattle area. Georgia threw up for two days, Brian had a horrible head cold and I was trying to avoid it all, unfortunately that didn't happen.
By the time our first clinic appointment of 2012 rolled around Georgia and I both had a cold. My thoughts going into our appointment were focused on Georgia's weight, she'd lost approximately a pound, all explainable by sickness but it's not always that easy.
We were shown to our clinic room and were soon visited by our favorite child life specialist who was just back from maternity leave. Mid chat with her our doctor walked in, I always try and read her face but because of our colds, anyone who came in our room was wearing an "isolation" gown and mask as to not carry germs from room to room. Once alone with our doctor she looked at me and said, I have some concerns about Georgia's labs. Instantly I felt my heartbeat accelerate. Her white blood cell count and her ANC were both low, this can be a sign of disease. Our doctor went on to say that she was actually happy to read in the nurses notes that Georgia had been sick, this could also be a cause if these counts dropping. She said she'd ordered extra tests on her blood work to look more closely at her white cells - JMML cells (most of the time) have a very distinct look, she was waiting on a page from the lab.
I can't even begin to tell you the thoughts that were swirling around in my head as I tried to keep a smile on my face for Georgia.
The doctor did a thorough exam, checking lymph nodes, and feeling for organs that my be enlarged all while I held my breath. Everything seemed fine. She wanted to have a nasal wash done to look for certain viruses, she said the nurse would be in soon and that she'd be back once she heard from the lab.
I heard the nurse outside our room, then i heard our doctors voice.. The nurse said, oh, go ahead, I'll come back. Here we go. She came in and quickly said that the white cells all looked normal - slight exhale. She went on to say that she ordered another more sensitive test but she would need to call me later with the results.
Georgia, the ultimate trooper, was ready to go when the nurse came in - a nasal wash involves sticking something up one nostril,and twirling it around for five seconds... not enjoyable. My smart girl immediately started saying ba-bye, then as she saw the nurse coming at her nose started crying line no, tube no - my poor little love thought she was getting an NG tube.
The rest of the afternoon was long, around 5:30pm the phone rang - deep breath. She said that her uric acid level was normal, typically if leukemia cells are present this would be elevated. Her nasal wash was negative which is really neither here nor there because everyone agrees she has a virus. The other result was on her immune suppressant, Sirolimus, three weeks ago her level was 4.5, now it was 16. This seemed odd given Georgia had been dealing with gastric issues so she asked that we have another level checked the next day.
So, I asked, what do you think? Our doctor is hopeful that Georgia's low white count and ANC are being caused by a virus - a cold. We need to be seen on Monday to rerun all of the blood work, we want to see these counts on the rise and that her other counts have remained stable. If her counts are still low and her other blood counts have been effected Georgia will need to have a bone marrow aspirate, if they are better we will cautiously move forward.
Today we returned to Chidrens for another blood draw - as we were waiting outside the lab Georgia looked at me and asked, poke? I said, yes, but it will be quick then we will go home. They called our name and we headed back to the room. Georgia sat on my lap, asked me to take her coat off then pushed up her own sleeves, such a brave girl.
The fact that two lab counts can indicate a cold or cancer, it's mind boggling.
We are so appreciative of prayers, thoughts, vibes, juju - whatever you have to give. We are staying positive and praying that this is all nothing. Even if Georgia's counts are great next week we have our major one year post transplant work up the week of January 23rd, this will include a bone marrow aspirate. In theory, the work up is going over Georgia's body with a fine tooth comb to make sure she is still 100% donor and cancer free.
