Friday, November 19, 2010

Back Home

Clara is REALLY going home today! She has a delay before her lung surgery and they are sending her home until that is scheduled. At this point, Clara has lived in the hospital longer than she has lived here. Hopefully she will not be freaked out by the lack of beeps, constant nurse interruption, and ability to turn out lights. Brooke jokes that through the process of taking care of Clara in the hospital she has her MRN (Mother's Registered Nurse) degree and finished it with all of her training to take care of Clara when she comes home. She had to learn to change out parts of the PICC lines, give meds, and other important stuff that I am still not caught up on. Of course, any little issues and we have to rush to the emergency room.

The CT yesterday showed that the lung absess more organized and slightly smaller (1.7x1.5cm) down from (2cmx2cm). Hopefully this means that the antifungals are working. They still plan to do surgery to remove something, but we are waiting to hear if it is an entire lobe of her lung or a different procedure. We also don't know if the surgery will be this Tuesday or the Tuesday after Thanksgiving. Obviously, a longer wait at home would be preferable. The difficulty in scheduling is getting a surgeon who is good at this procedure because apparently it is very difficult.

Unfortunately, the docs also noticed a nodule of aspergillus on her kidney. It is pretty small (7mmx5mm) but the doctors won't be trying to remove it because of its location. Hopefully it resolves with the anti-fungal medications. Speaking of anti-fungals, it is really nice knowing that is is a fungal infection and only getting 2 IV medications per day instead of something like 15 when they had to cover all their bases.

We also got a new MRD measurement from Clara's bone marrow. It has actually dropped now to 0.04% from 0.21%. There are two potential reasons for this: 1) Total count of cells increases while leukemia stays idle or 2) immune response to the leukemia cells. Both are good scenarios and are likely taking place. Option 1 fits well because her counts are almost 5x what they were at the 0.21% marrow draw (though I don't know how the peripheral count matches the bone marrow count). Option 2 is in play more because of the aspergillus infection. Aspergillus is fought with a cell-mediated response which should also attack the leukemia cells. It is not going to kill them all, but may help counteract the delay in stem cell transplant.

So the new treatment plan is 4 weeks of antifungals before her re-workup for transplant. If the workup looks good the plan for transplant will be ~Jan 3. There will also be some light chemo before then to keep her marrow cell count low. Hopefully at the beginning of the year all of the infection will be gone and we won't get a flair up as soon as we knock out her immune system.

4 comments:

Alan said...

UPDATE: Surgery will actually be Monday so we only get her Friday and Saturday night and she has to be back to the hospital Sunday afternoon. It sounds like they will be removing the entire bottom lobe of her right lung. Supposedly this shouldn't have a long term effect on her ability to intake oxygen for sports and such. Would like to verify with Kurt though.

Anonymous said...

Alan,
We have been praying for Clara (heard about her through a homeschooling group prayer request) every day. We will be especially storming heaven on Monday.
God bless,
Jennifer Dostalik and family

Sara Boone Hartley said...

thanks for the update, Alan! Glad you had her home for a weekend, but sorry it wasn't longer. She is the fightningest baby ever! :) Hugs to you all!

Mom/Mimi/Mama Deb said...

I know the weekend was like heaven in many ways. Hope all rested well and are ready for surgery and post-op tomorrow. I will be praying in the chapel for her at work tomorrow. (Very handy to have that just outside my office.) So glad Grandma and Grandpa Boyle could enjoy her in her house - something I have never seen, but someday!

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