Monday, June 15, 2009

Very long day today, but not too bad. We took off about 8:30am and had her dexa scan first. The worst thing about it was trying to find the place. Did I already tell you the story? Last Thursday, Hannah and I drove in 2 hours to get to the new place for her pediatric dexa scan. We went to the wrong place, then they sent us somewhere, then somewhere else, etc. etc. By the time I finally reached her endocrinologist by phone (after having to page the doctor because it's IMPOSSIBLE to get through to him) and we found the right place, they already shut down the machines and the techs had gone home. I was so frustrated. We turned around and drove right back home. What a waste of time.

So, we rescheduled for today, around her orthopedist appointment and 4 MRI's. Thank goodness they had a time for us this morning. I felt it was important that we meet with the orthopedist today because of all the foot pain she has been having. Well, got a call on Friday that the orthopedist was canceling! First they told me he was scheduled for surgery all day. When I told them that he could still see me for 15 minutes, they came back and told me he had a death in the family. I was so mad because I had scheduled everything else around this doctor, who is very hard to get into. They were supposed to call me back today, but that didn't happen.

So the dexa scan-the results weren't shocking, almost exactly the same result as previously. She has low bone density, no surprise. I have to wait to analyze the results with her endo doc.

We arrived for her MRI's at 2:00pm, to be told that they were an hour behind. They called us at home. Umm, we live 2 hours away and left at 8:30 this morning. Anyway, we got started after 3, it was long, it was hard for Hannah, there a lot of crying a wiggling. We didn't get the results because everyone had gone home by the time we were done.

Because of the delay, the waiting room was packed. It was hard-there was an Orthodox Jewish family there with a son who was having an emergency MRI. He was 2 and stopped walking a few days ago, Just won't walk. The mom had lots of questions for me about different things like CRP, WBC, etc. that I didn't want to answer. He may have a brain tumor. It was hard to see the little boy come out of MRI limp from anesthesia, and the mom rocking him and just break down crying. I just tried to assure her, it would be ok. No matter what, it would be ok.

There were many other young kids there waiting, but one that we knew from clinic. I never knew his diagnosis, but found out today he had an optic glioma (eye tumor). He has the same oncologist as Hannah. After chemo and surgery to remove the glioma, they found multiple tumors down his spine. He had surgery to remove as much as possible. He was there today because his eye had started to turn in again, not a good sign.

So, we won't know the results until tomorrow, which is a first for me. In for a long night I think. As we left I was checking out the monitor, seeing a big tumor in the back of her head. Good thing that MRI reading is not my thing. Couldn't really ever read those stupid things. After one of Hannah's first post chemo MRI's I popped the disk into my computer and called Dave to tell him she had a tumor. I just can't read them!

Here's to good news tomorrow...I'll leave you with a few more pictures, they are always more fun than text, don't you think! Rafting on Hannah's birthday, Hannah's penguin cake, Grandma and Grandpa, Chester, Hannah's birthday pool party, etc.! Last but not least, here is Tod, the picture of how I feel!!!!!
Enjoy!!

♥Kim