Scans and a Refill

This week has been so long.

 

On Monday, Brynlee had her usual home health blood draw to check her counts, and we learned that her hematocrit had dropped even further, so we scheduled a blood transfusion. Her ANC had gone up high enough that we were able to stop the Neupogen shots. Her platelets had also gone up a little bit.

 

Tuesday we had Brynlee's orthopedic followup at Shriner's with Dr. Carroll. Brynlee's hips still have a mild hip dysplasia, but they were looking good. Her back was showing a little bit more kyphosis, but Dr. Carroll didn't feel that it would be safe to put Brynlee in a back brace because of her muscle weakness and her current treatment for cancer.

 

After Shriner's we headed over to the PCMC to get her MIBG injection and to get her blood drawn to get ready for the blood transfusion that was planned for Wednesday. I was told that we could get the injection anytime after 10 a.m., but I should have known better. This injection has to be flown in from Canada or somewhere as it is radioactive material, and in the past I don't believe it has ever arrived that early. So we checked in at radiology at about 10:30, and it was about 11:20 when the receptionist finally called me up and asked me if I knew that her appointment wasn't until 2:00. I told her that I was told to come anytime after 10:00, so she called over the nuclear medicine guys and they said they would come get her in a few minutes. Finally about 11:45 they came and got Brynlee injected. We then headed up to the Hem/Onc clinic and got her blood drawn. They told me they had paged Dr. Fluchel but that he was in a lecture so it would be a little bit. I told them that I was told on the phone that I didn't need to meet with a doctor and that I just needed to get the blood drawn. Apparently there was some miscommunication between the person I had spoken with on Monday and what actually got put on the schedule. In fact, they were possibly planning on doing a platelet transfusion that day. I told them that I couldn't stay and essentially just left. Then as I was leaving I discovered that they didn't even have her on the schedule for Wednesday for the blood transfusion and they told me that there wouldn't be enough time to do one after her scan. However, I finally got them all straightened out, and we finally got out of there.

 

Wednesday Brynlee had her MIBG scan. It was pretty routine. 

 

 

Things went okay until it was time to wake her up from the sedation. Brynlee doesn't have wake up too kindly after sedation. She screams, she is violent, and she is just irrational. There are so, so many things about cancer treatment and everything that comes with it that are hard to deal with. Scans and sedation would be included in this list. We headed up to clinic and after about a half hour or so she finally somewhat settled down. We were able to get her blood transfusion started, and we also met with Dr. Fluchel. It took about 2 hours to get the transfusion, and everything went well. It's funny that you don't realize how pale they have gotten until they get blood and suddenly look overly pink again.

 

This picture was while the blood was going in and while she was happily eating her Jello.



 

We love blood donors!

 

It was a long day at the hospital, but we were so glad to get Brynlee's blood refilled.

 

Today we had Brynlee's MRI bright and early. We had to be at the PCMC at 6 a.m. for sedation. I think I got maybe 4 hours of sleep after what was already a pretty sleepless week. Brynlee woke up when they took her off of the scanner and started throwing her post sedation tantrum. Once I got her settled down and resting, she started having the same heart issues that she had back in November after sedation. Her heart rate didn't drop as low as it did in November, but it dropped low enough several times that they hooked up some additional heart monitors. She eventually regulated her heart, but we had to stay longer to watch her. I told the nurse practitioner that I was going to talk to her doctor about having her heart tested further, and she suggested that I ask for a cardiology consult. So we will see what comes of that. It's a little bit frustrating.

 

As for the results, I don't have the official results, but I asked the nurse who called today to set up Brynlee's blood draw for Sunday if there was any chance of finding out anything about the scans. She said that there was a report for the MRI in the system and that she would ask the nurse practitioner to give me call because she couldn't tell me anything. I don't have the exact details, but I was told that the two paraspinal tumor spots that had started growing again were decreasing in size and that the liver spots were still stable. We meet with Dr. Fluchel and Dr. Staddon on Monday to get the official measurements and percentage of shrinkage and everything, and we are scheduled to start her next round of chemo immediately after.