What CHOP wants CHOP gets

Dear Family and Friends,

Last week had a lot of ups and downs with Molly feeling not so great most days. I guess not feeling great is part of the blasts going down - they are currently down to 54%! That is a good thing. Her liver and kidneys appear to be holding up as well. We are trying to get her more protein in all ways possible, but she is having a hard time absorbing it. Her digestion is in rough shape and we are working to get her eating consistently and eating foods that will benefit her system. She is still without muscle spasms, so that is great and her pain level over all, is controlled with the extended release morphine.

Molly has been able to take a couple of bike rides in the neighborhood - amazing work Molly!

We had a zoom call last week with Dr. Yanik, Dr. Walling and Dr. Sarah from CHOP and we have finally figured out what CHOP wants! They have not said this specifically, but we have deduced that they want TWO CT Scans in a row that show improvement (or not worsening). 

On a scale of 0-10 (10 being the worst CT scan results)... Molly's scan in February was a 9.5 (really bad). In April the scan was much better - about a 5. This month, it is just slightly worse, at a 5.5. I think this describes the situation pretty well. The one this month showed some more white space on the top of the left lung that didn't appear there in April. So, they have pulled the additional blood work and we have seen that her Fungitell (or beta-d-glucan) level is lower than last month - yay! This is a good result. CHOP did say that they would take a Bronchoscopy as a test option to make sure there is not an active infection. Bronch's are very invasive and we don't want to put Molly through that, as it could be very serious for her and could keep her in the hospital for an extended period of time. If she is in the hospital, it is difficult to get her to hyperbarics, which is one of the main ways that she is even alive right now. So you see the conundrum and the complexity to these decisions... 

So, at the moment, there is no additional T-Cell collection planned right now (when they do this we have to take her off of the Venetoclax for 7 days). Dr. Yanik is willing to do it with one weeks notice, no problem when the time is right. And, we will plan for another CT scan in a few weeks to see if she has improved or worsened.

Molly continues the hard fight. Please keep praying for her to find the strength to keep it up.

A heartfelt thank you to all of the people that have been supporting us through the Meal Train. You all have been so reliable and the meals have been wonderful over the past EIGHT months!! I can't believe it has been this long and at the same time, oh my has it been a long eight months. Thank you all so much. We have put a pause on the meal train for the summer. If anyone is interested in continuing to support us this way, grub hub gift cards or gift cards from local grocery stores would be used for sure. 

Peace and Love,

Emilie