Today Jesse and I headed out for CHKD. We hit the CHKD clinic first for labs and results of the CT Scan she had yesterday to check her lungs. Jesse’s white blood count is increasing. But her ANC was 774. Her red blood is maintaining at 9.2. And her platelets have increased to 185.
Her CT Scan showed cloudiness in her lungs, even though 2 doctors don’t hear any rattling in her lungs. (Her radiation doctor heard some wheezing when she breathed in and out.) As precaution, her primary oncology doctor placed her on Azithromycin. We don’t know if the cough and cloudiness is fungal, viral, or bacterial. We can treat the fungal with V-Phen, and the bacterial with Bacterium and Azithromycin.
Then Jesse and I met with the radiation oncologist. His office is located in the maze that is Norfolk General. Our nurse (well the one that usually helps Jesse when her primary nurse is out) was super nice and walked us over from CHKD. (Who also called me at home to check on us. How totally awesome is that!)
The first thing that I noticed was the overpowering smell of cut flowers. Jesse noticed too, as did her nose (started running). What I really love was this huge sign right behind the flowers that said “Attention! Due to allergies, please refrain from wearing perfume or cologne.” (Not the exact wording). I guess people don’t think about the fragrance of flowers falling in the same category.
I know that people mean well with live flowers, and I like them as much as the next person. But when you have an adult or child fighting cancer, well they harbor bacteria. Not to mention in Jesse’s case I have noticed that her nose runs now in their presence.
In fact I said something to the nurse. I did preface it with a warning that I was going to sound like a word that rhymes with itch 🙂
She told me that a patient who just finished treatment dropped them off. I guess they are more informative over at CHKD.
I also decided while I was there if I get cancer, I am going to tell everyone I’m 18 so that I can get treatment at CHKD. It is so much more friendly over there. So full of hope and caring people. At Norfolk General, it felt so stark… depressing… like everyone there was fighting cancer… and it might not be that great of a chance for survival. I know that as adults we are supposed to face things differently, but it would be awesome to have the same level of friendliness and love that is at CHKD.
Our radiation nurse collected Jesse’s information (She was very nice, and really good to Jesse). Then we met with the radiation doctor. He told us that Jesse would have 12 treatments. Each lasting about 5-10 minutes, but since it involved sedation, the overall timing would be longer. I asked him if these treatments would be over 30 days. He looked at me like I was crazy. I then explained that our primary oncology doctor mentioned 30 consecutive days ( excluding weekends). He did say he would talk with him about that since their time and treatments differed so much.
He then went and looked at all of her scans. When he came back, he told me that since the tumor horseshoes around her spinal chord, he can’t avoid hitting it. This is going to increase her chances of curvature of the spine. He said 30%, and she might spend a few years in a back brace. He also said that this will cause her to be short. I stopped him. I don’t care if she is short. I just want her to have a great quality of life. Then he went onto fertility… I stopped him again. Because from what I have seen, no one can tell you if you are fertile or not. They just can’t.
He did mention that the mass was large… heard that before. And that they couldn’t avoid hitting her kidneys with radiation. I didn’t think to ask while we were there if this would cause her to have dialysis. I did ask the nurse that discharged us from clinic, and she told me that no she had not seen that at all. Reason being is that several lower dose radiation are pointed from different directions, all converging together at the tumor site.
He left to help start getting things scheduled. Jesse will have to go there to have another CT Scan, one that their machines can read. Then a week from that we will begin radiation. His nurse called sedation at CHKD to schedule a time, but let us go because she wasn’t sure when they would call back. I begged her to impart on them as early as possible because I really want Jesse to maybe be able to eat lunch and dinner. She only weighs 24lbs! I can’t afford for her to lose weight. But I know that I am not the only parent who probably has that axe to grind over what time their kid gets sedated.
I was a little depressed when we left radiation. All of this were things that I have heard before, and it’s my fault for getting used to what is happening. It’s hard not to. Life goes on no matter what is happening to any of us. The world keeps revolving.