We are having quite the rough patch this week. All of my kids got a virus, yes, including Brinley, so that landed us in the ER for the usual 6 hours because of a very low fever on Monday or Tuesday, I can't even remember. Anyhow, the port access was rough with the IV team because they couldn't figure out how to get the dressing on without pulling her skin up (her port sticks out quite a bit because of her skinny little body), so they had to take it off and replace it. By the time they were done her hair was soaking wet from her tears and sweat from fighting us. Then they did a respiratory test, which entailed sticking a tube so far up her nose I have no idea where it ended up. They just kept pushing it in farther and farther, she was choking and gagging, miserable. But ANC was at 2000, so we got to come home.

Yesterday we had clinic and it was an interesting visit. As I waited in the waiting room, I began visiting with an older couple who were there waiting with their daughter-in-law for a diagnosis for their 11 year old grandaughter. When they told me that I had to fight back a flow of tears. I remembered so vividly that time, waiting to know which road we would be taking. I just needed a road so I could start walking it. We talked for a long time and I really felt like it helped them to see us in a better place further down the road. It made me want to go volunteer somewhere with newly diagnosed families (when things are a little calmer for us, of course) because I remember what a dark time that was. I would have given anything for someone to come and just sit and talk to me who understood. Something to think about for the future.

Then we went down to the RTU for Brinley's LP (chemo in her spine) and while we were waiting we began talking to a woman whose daughter had just gone in for a bone marrow biopsy. Her daughter was 22 and had just relapsed 2 weeks ago, after 14 months off treatment. How devastating for them. The daughter was so upset to have to go through more she flat out refused treatment the first week. She didn't want to go through it again. Now she needs to get into remission for a bone marrow transplant, and the mother said they gave her a 50% survival rate. I can't even imagine being in their shoes. She had just gotten married recently. All these good, kind people, each of us dealing with cancer the best we know how.

Brinley's LP went fine, but she sure didn't feel very well when we got home. She complained about stomach and back aches, then all of a sudden a fever came on. Back to the hospital for a culture and a dose of antibiotic, and yet another port access. I don't know what could have caused that fever so suddenly. So I'm on fever watch today, because she in only covered with the antibiotic for 24 hours, so if it comes back we'll be back up there for another dose. If the culture grows anything it is an automatic in-patient stay, so let's hope for clear cultures.

Then Brinley couldn't sleep last night. She woke up at 3:30 or so and stayed awake just chatting away until 6. Then Mylee woke up to eat the minute Brinley fell asleep. I guess I shouldn't have stayed up until 1am cleaning my house last night, although it was nice to wake up to a clean house the day after Brin's chemo.

Rough week for little Brinley. When she was getting her port accessed the second time yesterday David was at work. He is pretty much always there when Brinley is at clinic, telling her how tough she is. She said through her sobs "I'm so tough mommy, will you tell Daddy?" The toughest girl I know.



Ilaria said...

GO BRINLEY!! You ARE so tough!!!

Adria said...

I'm always amazed at how strong our kids are. I'm keeping my fingers crossed that nothing grows and time flies until your trip!