Haunt Me Always ...

Haunt Me Always

There are certain days that we will always remember like they were yesterday; Certain events that happen where you always remember exactly where you were and exactly what you were doing when heard the news. For my parents generation it would be that memory burned in your brain of what they were doing the day JFK was shot, for my generation it would be hearing about the terrorist attacks on 9/11 and forever remembering how the news was first delivered to you. Among several other moments there is one new day that will forever stick out for me … and I am going to share it with you. I am going to share with you, in as much detail as I can, what I was doing when I found out that my daughter was diagnosed with leukemia. I am going to share the feeling in the pit of my stomach as I walked into the room the Hematologist, Dr. Hugge took us into to tell us that the blood test came back confirmed and Taylor did indeed have Leukemia.

Thursday, September 6th 2007, Taylor had her first fever. Following standard Mommy protocol, I gave her Tylenol and it went away. She was a little warm the next morning so she got to stay home from school. She was peppy little Taylor all day with no temperature (wasn’t that what happened to you when you got to skip school, too?!). That evening she was a little warm again, so we repeated the Tylenol and she was fine for another 24 hours. But this on again, off again fever continued. She stayed home from school Monday and Tuesday the following week, was able to go on Wednesday. When she came home on Wednesday from dance she was warm again! She remained warm this time. Thursday morning as Lexi went to school, Taylor stayed home. Taylor and I sat in my bed, watched cartoons on PBS and made crafts. We were making the Arch out of cardboard and aluminum foil. It was an art project that she had already missed at school that I thought she would enjoy doing at home. Throughout the morning Taylor ran between 101 and 103.5 degrees. Around lunch time I called her pediatrician thinking that maybe she needed some sort of antibiotics to help kick whatever it was that she had. They agreed, so we headed off to Dr. Farberman’s office so he could check her out.

On the drive up to the Doctors office, as we drove through downtown I had this feeling that later sent chills through me. I guess it is that good old mothers intuition that all moms talk about. But as I was driving I started to get a little freaked out because I thought to myself, “What if this is something awful like Leukemia ... it always seems like all those awful things start off with completely normal cold/flu symptoms and it is out of character for Taylor’s fevers to be like this.” I calmed myself down by telling myself not be so pessimistic and nothing was probably wrong.

When we arrived Dr. Farberman checked her out and agreed something wasn’t right. She had no other cold/flu symptoms, her ears and throat looked fine. Her lymph nodes were a little swollen and she had a fever off and on for a week and that was about it. He didn’t feel right about it, so he was going to try to get to the bottom of it. Dr. Farberman is the pediatritian to all of my girls and was for me and my brother as well. Our family’s medical history is comprised of many “medical oddities” and, as my Mom puts it, we’re the asterisk behind the descriptions. As it would turn out, this was one time that I was certainly glad that Dr. Farberman was familiar with all of these “asterisks.” He sent us for a chest X-Ray and a CBC. It took all afternoon to run around and get these done. As I kept calling everyone to update them, I kept thinking to myself, “I would rather be jumping through all these hoops to find out it was nothing, then to not jump through them and find out it was something”. As much as I kept having that feeling that Taylor’s fevers could be something bad, I kept telling myself not be so pessimistic and nothing was probably wrong. “You get what you look for. Now calm down, Lindsay,” I kept telling myself. I surely wasn’t prepared for that something to end up being what it was.

After the CBC, we were to go home and wait for Dr. Farberman to call with the results. We finally got home at about 6:15 that night and stood out in the front yard watching and yelling hello to about 10 hot air balloons as they were flying over our house heading for Forest Park to prepare for the balloon race that weekend. I was awaiting the callback from the doctor so I walked around with the house phone and cell phone in tow at all times. Being that it was after hours at the doctor’s office I was afraid to miss the call. I lay in bed feeding Peyton and the phone rang. This time it was Dr. Farberman. This was it. The call I never wanted to get. Dr. Farberman tells me, “Taylor’s blood count came back, Taylor is very anemic and there were some abnormal cells in her. I would like you guys to head up to the hospital to have further testing done tonight and probably have her admitted. Would you prefer St. Johns or Cardinal Glennon?” I tried to hold back my tears long enough to finish the phone call and then when I hung up … I absolutely lost it. I kept thinking … “How could this be…my little Taylor…he said abnormal….well I know abnormal cells can mean cancer, but maybe it could be something else.” (Still trying to stay positive!) As I struggled through my tears to relay the message to Chris, Dr. Farberman was calling Cardinal Glennon Children’s Medical Center to prepare them for our arrival. We packed up the girls, prepared Lexi and Peyton for the night and possibly the weekend with my parents. Grabbed a couple “lovies” (her baby blanket and stuffed animal) for Taylor to take to the hospital and we were out the door. Getting out the door quickly was a challenge in itself. The girls were just sitting down to eat. Chris and I were trying to hold ourselves together so we did not get the girls freaked out. I had to tell Taylor and Lexi that Taylor needed to go to the hospital so the doctors could help her feel better. Before we left, Dr. Farberman called back and said that it was all set up. We were to go to the Emergency Room at Cardinal Glennon and a Dr. Christopher Hugge would be expecting us. Dr. Hugge was in the Hematology Department and was aware of the situation and would take care of us. The 15-minute car ride seemed like a year as I tried to keep the girls from realizing that I was ctying in the front seat.

So, we arrived … they were indeed waiting for us. They took us back in Exam Room 13 (I’m not superstitious or anything, but could we get a better number?!). They laid her down on the bed. The nurses came in and explained what was going to happen. They would draw some blood, start an IV, wait for the test to come back, hopefully with a diagnosis, and then probably send us up to a room after being admitted. Dr. Hugge walked in and sat us down to kind of explain further what the initial blood test that Dr. Farberman had done had shown. Her White Blood Cell (WBC) count was high it was 35K (normal is 5-14.5K), her Red Blood Cell (RBC) and Hemoglobin (HGB) count was low as was her Platelet count. All of that could be caused by a number of infections so that wasn’t as much as a big deal as the fact that they found abnormal cells. Abnormal Cells??? ... Yes, the person that looked at her blood initially had thought they had seen what are referred to as BLAST in her blood. BLAST are immature White Blood Cells (WBC) that when found in blood would be a sign of leukemia. Yes, he said it….my little Bella may have leukemia!!! They would be running a number of tests on her blood, but they would first repeat the CBC to hopefully rule out Leukemia because out of any condition, that would be the most serious. They were barely able to get enough blood from her to run some of the test and then the nurses began their long struggle to start an IV. I say struggle, because it took then 6 tries to finally start the IV! Taylor would just fight them so much because it hurt; It hurt because she would be so tense that when they finally got the needle in it would pop her vein. This part was hard to watch. You could hear Taylor screaming down the hall, around the corner, down another hall, and almost even through the last set of doors leading you out into the ER Waiting Room. But don’t think the struggle ended there….once they got it in…she still wanted it OUT!!! Dr. Hugge came in and asked if Chris and I would follow him and our ER nurse down to a room for a talk. This is when I knew it wasn’t good … The whole way down the hall…my gut kept telling me that it was Leukemia. I kept thinking, “He is taking us to this room, he is doing that because it is bad…that’s the only reason he would be doing this. If it wasn’t bad there would be no need to take us down here. Oh God, Taylor has Leukemia, I know it.” We walked in, sat down, and there it was. “Well, Taylor’s CBC came back and … she has Leukemia”.

Oh God, why?! Why why why, I can’t believe it. My cute, little, tiny Bella Boo has LEUKEMIA. Why, how did this happen?!



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