Mary Jo Update #32 - This Too Will Pass and Hair Will Grow

Mary Jo's hematuria has passed. Another hurdle has been safely navigated on this journey. Evidently, the infusion of two units platelets fixed the problem. Mary Jo is methodically navigating through this post-transplant mine field. I am very proud of her.

Mary Jo's hair is falling out fast now quickly. It's falling in her food, etc. She asked Lizzy, her care partner, if she could shave her head. It was falling everywhere. So, Lizzy got the clippers out.


When Dr. Engelhardt and the team came in this morning, Mary Jo mentioned that "this is her 12th day of hurdles, some I have to crawl over." She started her pre-transplant chemo treatments 12 days ago.

Dr. Engelhardt said that he is confident that Mary Jo is ready to be taken off the heart monitor. Getting rid of the monitor, the diarrhea, and the hematuria will make it easier for her to take the walks that she needs to be taking in the hospital hallways. Things seem to be back on track for the time being.

Mary Jo's nurse practitioner today said that her throat will probably get worse before it gets better. She had chicken strips for lunch. She ate half of one because it was so painful to swallow. Mary Jo said that the sores are also spreading to her tongue.

They have started giving her miracle mouthwash now. Mary Jo said that the mouthwash kind of numbs your mouth. I guess that's how it eases the pain. Mirale mouthwash is sometimes called magic mouth. It's a concoction mixed up in the hospital pharmacy, but, you can mix it up at home, too. Here's some instructions, if you would like to try it:

The most common recipe is equal parts of Benadryl, Maalox, and lidocaine. However some versions also include tetracycline (to prevent secondary bacterial infection), a corticosteroid (to reduce inflammation), or nystatin (to treat or prevent fungal infection). If you are trying to make this without a prescription, ibuprofen can be used in place of lidocaine since you can only get lidocaine by prescription. Since this isn't normally swallowed, the dose for pediatrics and adults is the same. Swish and spit 5 ml 3-4 times a day is the normal dose.

Right now, the major hurdles are the mouth sores and extreme fatigue. Most likely, she will have to live with these things until day+10 to +14. She is on +5 now. Her blood levels should start recovering around then, too. Right now, her WBC is still .1 meaning she has virtually no immune system.

Since Mary Jo doesn't have hair again. She has asked me to bring her "bonnet" back from the apartment. Thanks again for all of your thoughts and prayers, especially over the last 24 hours. We are eternally grateful for your support.