The next turn

Good Morning,

Yesterday we had a team meeting with Molly's 2 primary doctors (Dr. Walling and Dr. Yanik) and also 2 other docs and her primary nurse, Pam. The meeting was to discuss Molly's current situation which goes something like this:

Her bone marrow did not recover as quickly as we would've hoped after the first round of chemo. In addition, she still has quite a few blast cells showing (leukemia cells). The leukemia must be in remission in order for a successful transplant. Due to the fact that they have also determined that she has a DNA repair issue in one of her pairs of chromosomes, they have changed to giving her an immunotherapy treatment (Gemtuzumab). This should target the CD33 cell on her Leukemia cells and will hopefully destroy them. Currently there are 2 doses planned, but I'm sure there will be more. She is getting the first one this morning (there are 4! premeds for this drug so she hopefully doesn't have a reaction). The drug is also very hard on the liver, so they have to check these levels daily or twice daily.

The most concerning part is... what if the Gemtuzumab doesn't work? At the moment, it is looking like they would try to get her into CAR T Cell Therapy which is not currently done at UofM for AML, she would need to go to another institution, possibly NIH. Thinking about this right now pretty much brings me to tears, so we will just cross that bridge if we get to it. 

Through all of this Molly has an incredible attitude - she is really keeping her spirits up which helps us all a lot! Seeing her smiling and making jokes with the nurses is awesome. She has been able to give out presents to the nurses as well (thanks to all of your support), which she has really enjoyed. 

Molly's mushroom drawing (in process)

The docs started talking about sending Molly home.... and I pretty much lost it on them. She has such a super complex situation and to put that all on us to be the doctor and nurse is a huge burden. I don't rant much, but let me tell you I was like - I don't think so. We will stay here until at least she receives the 2nd dose of the Gemtuzumab (day 8). Going home would look like... infusion 3 times per week and possibly blood draw daily. During this time, we are completely responsible for when to determine if she is having an issue - if she gets a fever (which is a main side effect of the Gemtuzumab) we have to come in through ER which is a minimum 15-20 hour commitment and in addition, Omicron is raging. NOT HAPPENING. They agreed and backed down a bit. We will talk about it again late next week and see what things are looking like. I finally settled down and all of the nurses have our back.

Ahh that pressure cooker feeling... must go meditate.

Please keep the prayers and positive energy coming!

Peace and Love,

Emilie