Sorry for the delay in putting up another blog post. A lot has happened in the last week or so that we need up update you all about.
Stem cell meeting came with great news, scary risks and much anticipation. Clara's donor is perfect in EVERY criteria about which they know to be selective. Incredible. We were scheduled to start the preparative chemotherapy either November 15th or November 29th depending on the donor's availability. Clara was actually being rushed through all of her tests in anticipation of a 15th start date. We were also told that if everything went well we could go home in 5-6 weeks after the transplant and do the rest of her medical work as an outpatient coming in 3-4 times per week. This news really helped us to see a light at the end of the tunnel.
Then on Wednesday night Clara started spiking fevers every 12 hours for the next three days. The doctors weren't sure why she was spiking fevers other than obviously an infection somewhere. She was also the happiest that she's been in over a month which was adding to the confusion.
Finally on Saturday the doctors decided to take a look at her chest to see if she had an infection there. Since it was the weekend, we "couldn't" get a CAT scan done. So, they took a chest x-ray. They discovered a pneumonia in her right lung. She wasn't showing any other symptoms of the pneumonia - no coughing, trouble breathing, and her lungs sounded perfectly clear. At this point, Infectious Disease (ID) became involved but wouldn't advise further than increasing her antibiotic and antifungal medicines until they had a CT scan. We pushed hard to have a CT done over the weekend so that they could get a better idea as to what the abscess in her lung was: bacterial, viral, or fungal. Somehow the resident managed to get this done on Sunday (which we understood was virtually unheard of) but the results didn't give a better idea of what it was. However, the CT did give us one more problem - they saw another abscess, this time in her brain.
To get a better idea of what the mass in her head was, they did an MRI on Monday. They hypothesized that it could be an old bleed, an infection from the same organism as the pneumonia, a combo of the two, or perhaps a solid mass of leukemia. Additionally, they took an aspirate and sample from the pneumonia in her lung. Unfortunately, the sample didn't provide conclusive evidence as to what the infection was. This is probably because they thought that the mass was mostly liquid but in the surgery found that it was actually organized and not as liquid. They left a chest tube in to drain the abscess but hardly any fluid came out. Clara was in a lot of pain from the chest procedure so she was pretty doped up all day.
On Wednesday we had the chest tube removed along with taking a better sample from her lung. During that surgery we also got another sample of her bone marrow to measure the current MRD level.
The doctors still do not know what the infection is for sure. They are leaning toward Aspergillus (a fungus). With this hypothesis they are hitting her hard with anti-fungal medication but also keeping up her levels of antibiotics just in case.
Tomorrow morning (starting at 6:30am) Clara will start procedures to have the abscess removed from her brain. The procedure begins with a 2 hour MRI where they map in high resolution 3-d her brain in reference to markers on her skin (stickers) and then use this as GPS during the surgery where they can see MRI images of the region they are working on. The surgery then take 3-4 hours, though they say it could take as long as 6 because they will be taking their time. The abscess is on the surface near the back of her head so should be relatively easy to remove.
After the surgery she will be in the PICU for a few days to recover and be monitored closely and then a few more days in the Neurology Unit to watch her carefully. Because she is gone for a few days we have to move all of our stuff home out of the oncology unit. We will probably be moving back into a different room in a week or so.
And last, but not least, we found out today that they will probably remove the lobe of her lung that is infected so that they can move her to stem cell transplant as quickly as possible. The Infectious Disease group says they can kill it in 6 weeks or so, but the Oncology group considers the transplant urgent. The idea would be to remove as much of the infection as possible and then let the anti-fungals work for the next 4 weeks along with her immune system (her neutrophils are up to 1500 now). After that they would probably risk the stem cell transplant if things are working well.