Evan MacNeil's Personal Profile
October/November 2007: Sister Emily comforts Evan after a bone marrow biopsy; Evan hospitalized for ATG
The drive to McMaster was strangely quiet and extremely apprehensive. Evan would ask some questions and clearly needed reassurance, but not knowing ourselves what the day would bring made it difficult to put him at ease. Walking into the hematology/oncology clinic and seeing so many precious little children bald and bloated from chemotherapy made us sick to our stomachs. We worried that this could be Evan's fate. Once in an exam room, we were met with the specialist who explained that Evan would be going for a bone marrow biopsy later that afternoon. He had us sign the consent form and presented us with the option of enrolling in a study about childhood leukemia which, of course, would only be applicable if Evan had leukemia. We signed. My head was spinning and I was certain the air supply had been cut off to this little exam room, which was getting smaller with every passing second. Though we remained composed on the outside for Evan's sake, my husband and I could see the fear in each other's eyes, confirmed with a hand squeeze between us. It became very clear to us, while in this suffocating space, that we would have to do whatever it took to appear calm and confident to Evan. If he would have to get his hips jabbed, it's was the least we could do for him.
We followed the nurses' directions to get to the department where the bone marrow biopsies were done. Waiting in another small room, we were paired with a young couple whose daughter of maybe five or six had obviously undergone chemotherapy as her hair was just starting to grow back. We sat there together in silence and all I did was wonder how on earth we were going to get through this - whatever "this" was. We brought Evan into the sedation room where a nurse started an IV and we were able to stay with Evan until he fell asleep. The procedure only took about 20 minutes, but it felt like several lifetimes. While waiting in the hallway outside the room, I was comforted by two moms whose children were also getting BMB's done. They could see I was on the verge of panic where few others would have noticed. They shared with me their memories of how difficult the first BMB was and how it was no big deal now. Was I really having this conversation? Was I becoming a new member of an exclusive club - moms of sick kids? They put their arms around me and I felt strangely comforted by strangers.
After Evan recovered, we were instructed to return to the clinic where a hemotologist would share the preliminary findings. The wait before seeing the doctor was excruciating. Finally, we were brought into an exam room and that's when we learned that Evan's bone marrow looked empty. A child's marrow cellularity should be upwards around 80% and Evan's was less than 5%. What did this mean? They were fairly confident that he did not have leukemia and believed he might have aplastic anemia. I had already prepared myself for this, or so I thought, as my research in the previous days led me to this conclusion as well. Their recommendations were to come back in a week when they would repeat the BMB and make a definitive diagnosis.
We were pensive on the drive back home, but underneath the fear there was satisfaction that we had managed to advocate for our son and get him under expert care within four days of learning he was sick. This was a good start but we would have to keep it up. Unrelenting advocacy became the name of the game.
The following week we returned to the clinic and found our way back to the sedation room. Just like the time before, Evan handled his IV start and BMB like a champ; he made us so proud. And just like last time, once Evan recovered we returned to the clinic to learn that Evan would stay the night so they would have time to fully examine the biopsy and study the aspirate. Laying in the hospital bed that night with Evan was surreal. Evan and I took turns reassuring each other. I remember we would hold each other's hands and say out loud "deep breath" and then we'd take one. We did this several times before Evan dropped off to sleep. I laid awake watching my baby boy sleep. I watched his chest rise and fall and wondered what the future held for him. I watched the mom in the bed across from me chat and laugh on the phone while her little boy squirmed restlessly on her lap, seemingly unable to get comfortable. It seemed so normal for her to be dealing with her little bald and swollen sick boy. Would this become my normal also? Would I one day be able to laugh and joke and be the mother to a sick little boy? I couldn't even imagine it.
The following morning, a new pediatric hemotologist came to see Evan and examine him. It was then that we learned Evan did indeed suffer from aplastic anemia and at this stage, he was considered severe. There it was. On the table. Evan really was sick, really sick. Adrenalin rushing. Fight was the only option and we were prepared to fight like hell.
Evan was admitted to the hospital on November 13, 2007 and had a port surgically placed in his chest the following morning We had learned the week before that Evan's sister Emily was not a match for transplant, so Evan began five days of horse ATG on November 15, 2007. The first dose was rough, causing Evan to develop a fever, but the subsequent doses were given more slowly, over 12 hours, and Evan did great. After one week in the hospital, Evan came home and continued his home schooling that we had set up back in October when it was established that Evan's white blood cells were too low to be around other kids. Evan's days were spent gaming and resting. The fact that Evan took to his medicines with no fuss impressed us to no end. He had to take liquid cyclosporin twice a day, prednisone three times a day and G-CSF, a white blood cell booster, daily by injection. The needle was scary for Evan initially but with Emla cream to numb his skin, he felt much less apprehensive. Evan never gave us any resistance when it came to his medications and restrictions. I believe he was as cooperative as he was because his Dad and I were very honest with him about his disease and the seriousness of it. He understood that if he didn't take his medicine properly, his disease wouldn't get fixed and he could die. We promised him that we would always be honest with him and we would never once waiver on that.
Evan remained on the prednisone for approximately four weeks and the G-CSF for approximately two months. In the early days and weeks after the ATG treatments, Evan's counts tanked and he needed more transfusions than ever. There was one point where he was receiving a unit of packed red blood cells every two weeks and platelets every three days. No one warned us that this was expected after ATG so we found this quite upsetting.
I was fortunate to be able to take a leave from work to be with Evan full-time. There was no way I would have been able to work with Evan constantly on my mind and sleep evading me night after night.
Next: Transplant Decision