Tuesday, October 13, 2015

Round Three

A little background info to help you appreciate today's events...
The scheduling nurse at Jimmy Fund called last week to tell me that our clinic day would be on Wednesday instead of Tuesday because the clinic is extra busy on the Tuesday after a holiday. I had to tell her that wouldn't work for us because we already had multiple meetings and appointments scheduled for Wednesday. She was able to work us back into the Tuesday schedule with our normal check-in time of 10:45am (I requested this check-in time a couple months ago in order to avoid traffic on the way into Boston).

KK and I went to HCA for chapel this morning. We left there in plenty of time to get to Dana Farber before our check-in time...in fact, we should have had 20 minutes to spare. Unfortunately, we hit quite a bit of traffic and ended up being almost 10 minutes late. I felt awful knowing that they were already squeezing us in. I was surprised when they called us in for vitals and blood draw almost right away...I thought for sure we were going to have to wait. The blood draw went so smoothly! NOTE TO SELF: Today's nurse introduced us to Skin-Prep to help the tape stick to KK better...I have to remember to ask for this in the future.

We picked up KK's lunch and returned to the waiting area until our appointment with the nurse practitioner at 11:30am. KK barely had two bites of her lunch when they called us back. I was shocked. It turns out that the two patients scheduled before us had not shown up yet. Nurse Mary Ann checked in with us about the last couple of weeks, examined KK, convinced a crying KK to get a flu shot, then checked to see if the lab results were back -- fully expecting them to not be ready since it had only been about 30 minutes since the blood draw and it usually takes 60-90 minutes before they get results back. She was surprised that most of the results were already back. The only set that was missing included the ANC (Absolute Neutrophil Count) which is the count they use to determine if KK can start the next round of Temozolomide.

We returned to the waiting area until the infusion appointment at 1:30pm. I checked MyChildren's Portal on my phone around 1pm to see if the lab results were available. KK's ANC was 980 -- just under the minimum 1,000 they would like it to be -- so I wasn't sure what was going to happen with her treatments. Just before 1:30, the infusion nurse came to get us and told us they were going to go ahead with both the Avastin and Temozolomide. So KK settled in for the 30-minute infusion.

The only thing that took longer than expected (aside from the drive in) was getting the Temozolomide from the pharmacy. It took so long that I wasn't with KK when the nurse took the needle out of the PowerPort and gave her the flu shot. KK told me that the shot didn't hurt as much as she thought it would and that she didn't even cry.

We hit no traffic and arrived home at 4pm...just in time for the first dose of Zofran.

We are so thankful for a quick and easy clinic day today!

Looking ahead...
KK's blood counts will most likely drop each month because of the Temozolomide. Please pray that they will bounce back enough every 4 weeks so we can stay on schedule through the next two months. Otherwise, it may impact our trip to Disney in December.


Susan said...

So glad your trip into Boston went so seamlessly. Praying for all the details around the Disney trip in December!!

Heidi Peterson said...

Thanks for all the great detail you post to keep us updated. We are praying every day.

Heidi and Bethany