What Dr. Cocheba took out of Miette was small; if I remember correctly it was about the size of a marble. He sent that to a pathologist, apparently as any doctor should do when pulling anything out of a body like that. When he got the report back he was devastated. The Cocheba’s adored Miette. They had a son her age as well. He said it was a very rough day for him as he tried to get a hold of us, back and forth on our cell phones leaving messages. He felt horrible to have to inform us of this. It’s not something a friend would ever want to do, but he had to do it.
Once the absolute acute shock wore off a bit, we called him later that night to get more information. He described what he knew about the neoplastic cells; Ewing’s Sarcoma. ESFT (Ewings Sarcoma Family of Tumors) looks like a small round blue (or purple) cell under the microscope.
It’s a very rare bone cancer. Dr. Cocheba said this form neoplastic cell its treatable with good numbers as of late. This of course, didn’t comfort us. There’s not much to comfort parents when they are listening to survival percentages being assigned to their children. Maybe it would be different if every time a family traveled in a vehicle we would be given survival percentages by a doctor; you have a 97% survival rate heading to your friends house. Dr. Cocheba was telling us 70% survival after 5 years. Well, what about after 5 years? What do you mean 70%? Are those 70% healthy? There were so many questions rushing in all at once. Trying not to suck Dr. Cocheba of all his knowledge was difficult. He let us know that he had already set up appointments for us the following week at Seattle Children’s (SCH) and has sent the pathology reports to the director of oncology at SCH, Dr. Hawkins. He explained the high qualifications of Dr. Hawkins and the surgeon, Dr. Chappy Conrad. He explained that he would take his child there if it was him. Coming from a doctor, that was convincing to hear. We asked how much of the bump was left; he didn’t know for sure. Dr. Cocheba took out a piece that was on the outside of the bone, so was there more on the inside of the bone? Was it anywhere else in her body? He obviously didn’t have any answers for us. So, after asking as many questions as we could think of, we made plans to come up and see the Cochebas after her scans the following week and ended the phone call.
My grandpa had prostrate cancer and it eventually went into his bones. That’s all I knew of bone cancer… that and the little snippets one reads in newspapers about this or that person passing away of bone cancer. Needless to say there was some internal turmoil going on. Our sweet little girl, healthy as a child could be, running and skipping and enjoying life, has cancer. That was a very, very tough pill to swallow.
The following week came and we headed to SCH. If I remember, the first thing we had scheduled was 3 scans: a CT, MRI and PET scan. We didn’t know what any of these really were in terms of how they were used to detect cancer. The CT only detects a certain size of tumor and the PET has its limitations as well. After the scans, we would have a consult with Dr. Hawkins to talk about what the scans showed. When we walked into the main lobby of SCH, it was overwhelming. It was packed. Tons of people walking around like a shopping mall at Christmas time. Lame kids, deformed kids, bald kids, mentally handicapped kids. No offense to those families at all, but this was the last thing one needs to see when being faced with a new trial like this. All these conditions coming at you all at once. Seeing one child suffer through a chronic condition is humbling enough. Seeing 15 of them walk past you in a 5 minute period brings one to the verge of collapsing in horror. But we also had our own child with a condition now. It’s amazing we made it through that day without falling on the lobby floor, sobbing. We saw plenty of parents who looked like they wanted to do the same.
Miette, of course, was completely unaware as to what this all meant. She knew her bump needed help to go away and that’s what this was all about. We needed to take “pictures” of her leg. It was a fun trip to her. We got to stay in a hotel with a swimming pool and a nice view of the Space Needle. We weren’t ready to tell her anything about cancer, by any stretch of the imagination. We didn’t even know much ourselves at this point.
We checked in at the Radiology reception desk and waited. When they called Miette’s name, we headed to a room where they would prep Miette for the scans. They needed to ask us a gazillion questions about her health history and then put an IV in her elbow. We weren’t sure how Miette would react to the IV but she did absolutely wonderful. Didn’t cry, didn’t flinch… nothing. Whew.
The process would be as follows: She would be taken down to a sealed concrete or lead lined room to be injected with the isotopes for the PET scan. She will then need to be very still for an hour (Yes, Miette needed to be still for an hour). Then she will be taken to another room where they would sedate her. Once sedated, they would perform the 3 scans. After the scans were done, she would be taken back up to the original room where we will be waiting for her. The nurses said she should be awake within 90 minutes after being sedated. Miette was all smiles, until the sedation took effect and off to sleep she went, so suddenly. The sedation was a very hard thing to do emotionally. Not sure why, but its a very uneasy feeling. Seeing her hooked up to so many tubes and wires was difficult. Our little girl, all hooked up. Ick.
To be continued…