Another long day at the hospital. This time to meet with the Oncologist who had taken over Tag's case. We hoped that finally this time we would have some answers about the gene test that had apparently been conducted more than 3 weeks ago.
Joann made the appointment for 2 pm and we hustled to get there right on time. As we arrived, we checked in at the Oncology front desk to a puzzled look by the friendly receptionist. She informed us that our appointment wasn't until the following day. I about lost it. Joann had made the appointment so I looked at her and she calmly told the lady that she was mistaken. The lady could tell that we were anxious and she said that she would contact Dr. Bruggers to see if she could meet with us today, but unfortunately our wait would be at least an hour and a half, as Bruggers was in a surgery.
As we sat down, I asked Jo what happened and she said that Bruggers assistant (who shall remain nameless) must have messed up. I asked the receptionist for his number and I called him to find out what had gone wrong, and let him know how many challenges his mistake had caused us. Then I had to spend 30 minutes on the phone rearranging schedules and changing my own meetings around in order to accommodate this new doctor appointment. I swear, if in my businesses I ran my customer service like many doctors do, I'd be out of customers. I guess it pays to have such desperate, motivated customers who put up with such crapola.
While I was on my phone calls, a nurse took Jo and Tag into a room to ask some initial questions. I tracked them down and joined them and she was asking Joann the typical "get to know you questions" and after she was done, turned to me and asked, "So, do you have any questions?"
I am typically a really positive person, but this was the wrong question to ask me. I felt this welling up of frustration and I responded something like this: "Yes, we've been waiting for 3 weeks to get the results of some supposed gene test that will tell us whether or not my son has cancer cells in his tumor and I still don't have any answers. If you could find those answers for me that would be great." Now mind you, my tone as I responded to her was quite curt (my Mom knows this tone well), but I just found myself letting her have it. As I was completing my comments, I looked at Joann and she was giving me that "What are you doing?"-look. I apologized to the nurse and told her how frustrated I am wondering about the health of my son and that I hoped this appointment would be the appointment that would provide some answers.
This nice nurse calmly responded that she had no idea about the tests, but that she would be happy to allow me to vent my frustrations if that is all she could do to help. I decided to simply tell her thank you.
Finally, Dr. Bruggers came in and she was delightful and happy. She pulled out a sheet of paper that had the results of the infamous gene test. Could this be the moment (after 6 weeks!) that we finally have a definitive answer as to whether or not Tag's mass is malignant or not? Yes, this was the moment. She smiled and said that among the cells they tested, there was not a sign of any cancer cells in this myofribroma. I yelled out a loud "Woohoo!!" (to the surprise of everyone in the room) and Bruggers responded, "Yes, this is very positive news."
She then told us a few more interesting things. First, that there is always a disclaimer on this kind of news, as a biopsy is only a small piece of a tumor and they just never really know for sure. Second, that Tag's mass is so very unique that they simply don't have much to compare it to. Third, that she was sure we wondered what were the next steps and when do we take off the mass. I wanted to tell her that was the biggest understatement of 2010, but I just simply said, "Yeah, that's been on our minds."
She agreed with Dr. Sadiki's (pediatric cosmetic surgeon) assessment that if we can stand it, we allow baby Tag to grow for another 3 months or so, so that his skull can develop and get stronger. At the same time we monitor the mass and hopefully it shrinks on its own. It hasn't shrunk much yet, but that is the hope. Bottom line, it's in Tag's best interest to wait and watch for a while.
Tag passed yet another test. Way to go son!
After the appointment, we had a bunch of errands to run. I want to mention one of them. I have some close friends named Wayne and Faye Kotter in Salt Lake. Their sons went to school with me at the U and somehow I was lucky enough to get invited to go over to dinner at their house one time years ago. Since then, Wayne and Faye have been like surrogate parents to me. They have one of those homes where you don't even ring the doorbell. I just walk in and they wrap their arms around me and always make me feel so welcome. It's been quite a few months since I had seen them and I found out recently that Faye had been experiencing a shortness of breath and when she visited the doctor discovered she had ovarian cancer that had spread all over the place. Her son informed me of this only a few weeks ago and I had been anxious to make a visit and give her some positive vibes, and allow Tag to work his magic in buoying her spirits.
It was so good to see them. Because of her chemotherapy, Faye's hair was gone but she was sportin' a handsome hat. She commented that she had been following this blog and that it had made her cry a time or two and this really touched me as I was so happy to know that perhaps I had helped inspire her in some way as she struggles with her own challenges. We had a good chat about challenges and the difficulties of life. As I relayed bits of my own story, Wayne (who was sitting by me) placed his hand on my neck a few times in a gentle manner. Without even saying a word, he communicated his fatherly love for me and I commented to Joann afterwards how this touched me. It was a great lesson for me as a father to remember to listen to my son and to touch him warmly now and then.
We laughed as I told Joann about some inside jokes I have with Faye and I was so inspired as I spoke with her. I commented that if any two people could beat cancer, it was my Dad and Faye Kotter. They both have such happy, positive spirits and we talked about funny movies she should rent and watch.
Anyway, Faye if you're reading this, please know that I love you and I fully expect Tag to get to know you, so stay positive and full of faith.
Last night, Tag fell asleep on my chest. I had things to do, but I chose to simply put my hands on him and lightly hold him. It was magic.
