Long.....Long day

It's been a really long day. I am writing this from the day hospital and we still have 1 hour and 15 minutes of IV hydration to go, so we should be out by 8pm. In all we will be here over 12 hours today.

Even though it's time consuming things are going really well. I think the biggest relief was when they took Emily's vitals this morning, her pulse was 99, which is totally in the normal range for a 6 year old. We hadn't seen it below 130 in almost 2 weeks. Her blood pressure also dropped. I was really happy to see that, I was nervous about her being put under while she was tachycardic. Tracy also told me that she was also really nervous about the pulse, but hadn't voiced it like I was doing, we both really relaxed when we saw she was back to normal levels.


Emily's port line was a little clotted when they accessed her port this morning. They had to give her a dose of TPA which is a blood thinner. After a half hour we were able to flush the port and get a blood return. This doesn't mean Emily had a blood clot, just maybe some fiberous precipitate at the end of the port. Tracy tells me it is common, and she often has to TPA ports on her floor.

After we resolved the port issue, it was time to go up to the second floor and check into the APU. the APU is where you go for out patient proceedures where you need to be put under. Emily was already accessed and she went under very easy for her LP. After waking up she could finally eat, she was NPO until the proceedure was done. In her recovery bed she ate a sandwich and a piece of chocolate cake.

From the recovery room we were transported to the Day Hospital for the IV Chemo. Emily got doses of Cyterabine and Cytoxin, tonight she will start taking a pill called 6TG, which is very similar to the 6MP pill she has taken through therapy.

Right now we are sitting in the day hospital because after Cytoxin you have to hydrate for 4 hours.

So what's next? Next week is Emily LAST LP. Today was her LAST DOSE of Cytoxin. She has to take the 6TG for 14 days starting today and then it's done. We also are going to give her 4 doses of Cyterabine this week and next week at home via IV, then she is done with Cyterabine. So really on October 14th, she will be essentially done with intensive Chemo. The rest of the phase is for her blood counts to return and for some possible transfusions. This phase brings her blood counts to very very low levels. It may take 3 or 4 weeks to recover.

We are getting very close to maintenance.