A Timely Transfusion

Katie is at Fletcher Allen right now getting her fourth transfusion and she really needed it again. Her hemoglobin numbers have been dropping steadily since starting this latest round of chemotherapy and it finally caught up with her. She was tired this morning--very tired, and she was complaining about a headache yesterday afternoon. She hadn't gotten out of bed by the time I left for school, and when I talked to Amy two hours later she was sleeping in the car. We are also wondering if she may be coming down with something or if she is feeling nauseous due to her chemotherapy despite her anti-nausea medicine. She vomited in the car this morning, and she hasn't had vomiting issues before.

This just in. Amy called while I was writing this post, so I can add some additional information.

Katie is most of the way through her transfusion at this point and is feeling great. She has a nice pink color to her skin, she is warm and she is wiggly. Her headache is gone, and even her stomach feels fine.

I also just learned that a researcher at the John Hopkins Hospital has confirmed that the original blood samples did contain small numbers of monoblasts, the indicators of AMoL. Therefor, Katie is no longer considered to have just ALL, she officially has a mixed lineage form of leukemia. The MRD results have also been confirmed, and the monoblasts do appear to be gone at this point.

The doctors have told Amy that these results don't change her prognosis at all because of her previous successes so far. She is still an early responder, and she is still accepting her chemotherapy very well. She is uncommon. She is special. She is Katie, and she is working hard to beat this.

More from Monday

We are home and the kids are in bed. We got home just shy of 14 hours after we left for the day and the kids are tired. For that matter, so are the parents. Josh went with us today for the first time since coming to visit us in the hospital during our first stay. He got to watch as his sister had her port cleaned and accessed, as she was actually given anesthesia and put to sleep, and as she received her various chemotherapy infusions. He also got to while away the hours with us, just hanging out in the hospital room and the infusion bay. When we asked what his thoughts of the day were, he summed it up with one word - boring. He was sorry that his sister had to go through that, he definatley didn't want to have to go through that, but he also didn't want to have to stick around and wait for it all to happen either. I think he has a new appreciation for why we keep sending him to school even when we have to turn around and head to Burlington after dropping him off.

In addition to the discovery of AMol indicators that I mentioned in the earlier post, we also learned the results of Katie's MRD test. The test indicated that she has as many or fewer blasts left in her body as a perfectly healthy person without leukemia. That is very good news. Now we just have to work to keep those numbers from every coming back up. The finding of possible AMol (Acute myeloblastic leukemia type 5) is frankly terrifying, but the MRD results are very encouraging. If AMol was present in her body when this all started, it seems to be gone now. Success rates for AMol are just a lot lower than I would like them to be and the disease is considered rare instead of common like ALL.

As part of our new round of chemotherapy, we will be traveling to Newport Pediatrics 3 days per week to receive some of the chemo drugs subcutaneously. We will also be giving oral chemotherapy drugs at home in doses that vary by the day on a schedule that has me slightly confused. Luckily, our doctor really likes calendars and thinks everyone should use them. She made us a calendar of what to give, how much and when.

Because of the new round of chemo, we can expect Katie's blood counts to start dropping again and she will lose the energy that she has been enjoying so much over the last week and she will likely become neutropenic again which make her nauseous. Wish us luck.

Oh My! What a Day.

We left our house at 7am this morning, arrived at Fletcher Allen by 9:15 and didn't leave the hospital again until 4:30 this afternoon. We found out all sorts of information today, including the fact that a research facility that has been testing Katie's early marrow and blood samples has found what they believe are monoblasts, a symptom of AMoL, not ALL. This new information has changed how Katie's chemotherapy will be handled in the future. She will now be receiving a combination of drugs and treatments designed to kill off both ALL and AML.

Today was the first day of this new attack on Katie's leukemia. She received no fewer than 4 different forms of chemotherapy drugs today. She received 1 via a lumbar puncture and 3 via her new port. The port worked like a charm even though Katie screamed like a banshee as they prepared to access her port. She screamed as they wiped the site with alcohol, and continued screaming as they accessed the port but the screaming never intensified as the needle went in. I don't think she felt a thing, she just didn't want anyone near her "boo boo".

Everything just seemed to take forever as we waited for one fluid or another to drain from the IV bag into her little body. We are currently visiting with Grandpa Art and Grandma Kathy, preparing for our trip home. I don't think I'll have a hard time falling asleep tonight.

I'll give a longer update when we get home.