Bits and bits

Dear Family and Friends,

The days continue to be a series of roller coasters...maybe one really big roller coaster with a lot of ups and downs is a better analogy... One day Molly will be feeling good, then next day, bad. Good, bad. That seems to be the rotation. I think we just got to mostly 2 good days in a row, but I don't want to speak too soon (its only 4pm).  A shout out to Molly's friend Noa - the other day she reached out to Molly and ended up coming over... her and Molly walked around the block with no oxygen and continued to be off the oxygen for around an hour after! Amazing!

This week we have been able to get some movement regarding CART cell therapy trials...because I reached out directly to CHOP and NIH to get the details. The main issue is that Dr. Yanik has been out this week due to a family situation (which I completely understand!) but Molly's case just can't wait. So, I took it upon myself to learn that the CART trial that we had hoped Molly could get into is not letting any new patients in at this time, could be months, no one could say. In my discussions with Brooke at CHOP, there is possibly another trial for CD123 CART that she could qualify for that IS accepting new patients. So this may be great news.

We worked hard last week to get things in order for Molly to start Chemotherapy on Monday, but that call came to a screeching halt on Friday afternoon when we learned that the major hurdle she has to get through for the trial is the infection. We do not want to start chemo before she would possibly get the T cells harvested because there has to be a 2 week waiting period after chemo AND we do not want to suppress her immune system any more. She pretty much meets all of the other criteria at this point, but the tests next week will help us determine if she is free from any blood infections or if her lung infection is clear enough to get her into the trial. IF, she can pass these tests as we hope, then the next step would be for CHOP and UofM to work together to get her T Cells harvested. Meaning, UofM can do the harvest and send them to CHOP, then we wouldn't need to go down to Philly until the cells were ready for her. Once they are ready, it is a 5-6 week outpatient treatment plan.

So that is jumping ahead just a bit, but gives some clarity on what we have been fighting for this past week. It has literally been a full time job for both of us. Aaron has worked hard in finding new studies and information about MDS/AML and trying to do anything to help save Molly's life. This is what we do.

A shout out to all of you that have continued to support us and make this situation more bearable. We love you all and could not deal with this without you in our lives - thank you!!

For those of you at the Celebration of Life a few weeks ago... remember that we did not know if Molly would even make it to the party! and here we are!

Please feel free to see (and download) the amazing pictures and love that surrounded us on that day:

Molly's Celebration Photos

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These 2 ladies have been by Molly's side the entire time ;)

Molly's blast count is still under the threshold for getting the CART therapy, however it continues to go up, little by little. She went to clinic M-W-F this past week instead of every day, so it was nice to have a couple of days at home without the morning clinic visits.

Please keep up the prayers for Molly to pass the tests next week and that the process stays on track.

Peace and Love,

Emilie