Meeting with Haven's Doctors - 6-16-08

Yesterday was a pretty rough day and wore me down. We met at the hospital and spent our afternoon with Haven’s doctors. Knowing it was going to be a long day I stopped by Starbucks on the way (mmmm). You should see Haven when she’s heading in to the hospital and cancer clinic. She’s so determined and matter of fact when she walks. She knows everyone and knows exactly what the routine is. She got her blood pressure, temp, heart rate, weight and height done. She knows the order of each thing exactly. Katie then set up the butterfly to access the port and take blood. Haven jumped up in the chair, pulled her shirt down and was ready to get the needle. I have a very hard time watching this but Haven demanded that I stay and dad go in the other room. Usually he stays but I think she wanted to torment me. :)

We were with the doctors for quite a few hours, as these meetings are usually very long and overly informative. So much information you actually get a headache within the first hour.

Spot on her back below the shoulders. Well it takes about 3 months of constant demands by Kris and I for them to pay attention. But the spot has grown and looks different than it used to – her doctors agreed. We have a CT Scan being scheduled for this area. They now are not sure what it is. Her doctor is going to contact the surgeon to get his opinion. Once they all meet about it and review prior MRI’s they will call me with the CT date. They will not do a biopsy at this time – even tho I requested it.

Lump at her neck – this is due to the steroids and should start to go down as the steroids taper down.

Her counts – all of her counts are where they should be for what she needs. Obviously they suck but it’s all due to the medications.

Immune System – they believe her immune system was so strong when they started, noting she’s never been sick in 4 years. She still has infection fighting cells – everything else is low but those are still there. Her body is also keeping most of her hair – which kinda makes me mad. I wouldn’t have cut it if I knew most of it would stay. She’s lost a lot but it just looks thin.

Eye – we are being rescheduled in to Wilmer Eye Institute for review. They need to check the angle of the eye. Haven will have to have surgery on her eye to correct it. They will go in and tighten the muscle of the eye. HOWEVER, this can not be done yet. See below on Tumor.

Sleep study – they will be scheduling Haven for another sleep study in July. Kris stayed with her for the last one – I will have to see if she wants me or daddy to do it again.

Endocrine – they are scheduling her to meet with them again to review her body, glands and such. Anything Oncology may not be looking at – even tho the look at everything.

Tumor – we discussed this for a long long time. Well I kept pushing at them about it – I even looked at Kris and asked if he was getting annoyed with me yet! I don’t like it in there – I don’t like knowing it’s there. Well it’s there and as of right now we are doing nothing about it. I asked them about surgery and the doctors were very frank with me. IF they put her on the table for surgery she most likely will die. Her morbidity rate is TOO HIGH right now and she wouldn’t make it through it. Even if she did make it through it she would be at too high of a risk for infection afterwards. All they can do is watch it and hope it doesn’t grow. They will not add more chemo to her schedule for the tumor right now either. So this kinda brought me down a bit.

We did more blood work and left. While in the car Haven called her dad and asked to go out for dinner. He said ok and we went to his fave restaurant. However, I ruined dinner – half way through I just couldn’t take it anymore and I broke down and started spiraling into depression. Start freaking out about Haven never seeing anything and never experiencing anything and how we never do anything. I started crying…..needless to say dinner ended early and we went home. I was much better when we got home and Kris went to get Haven some stuff at Walmart. It was early to bed for me and Haven last night. Now on to the rest of life!

Hope everyone is doing well. This was a long one but so was our meeting! Love you all. M