Bialy Tuesday

Good Morning Family and Friends,

We are happy to report that Molly made it to Bialy Tuesday at Zingerman's and enjoyed her bialy this morning.

After our meeting with the Doctors yesterday, they agreed that to get Molly to CAR-T therapy we need to try and stop her blasts from going up. This is a challenge, as we know. So, she is starting two drugs outpatient, on Monday 3/7. A 5 day course of decitabine and will combine this with daily venetoclax. Both of these drugs are allowed for the trial. The question here is will the infection improve while taking the drugs... no one knows, but we will pray for Hyperbarics & Isavuconazole to continue to work.

Today I communicated directly with NIH and CHOP to see if I can move the ball forward on our side. I figure it can only help and ultimately UofM Docs will need to turn over the charts anyway. These are our 2 primary choices, as they are the closest to home... but we will go anywhere that can get her in as soon as possible.

Molly's Hyperbaric oxygen treatments are going smoothly and she continues to feel good during and after them.

Resting in the chamber


Molly continued with climbing stairs yesterday and also had another acupuncture treatment. 

Thank you for your prayers and positive energy!!

Peace and Love,

Emilie



Comments

  1. Melynda SchudrichMarch 1, 2022 at 4:05 PM

    I'm so glad Molly is able to do the hyperbaric chamber. It is such a powerful device. I'm sending big prayers that the new treatment will help. <3

    ReplyDelete
  2. AhnuhMarch 1, 2022 at 9:06 PM

    So happy to hear this. Sending love!!!
    Ahnuh

    ReplyDelete
  3. KimMarch 3, 2022 at 10:09 AM

    Sending lots of love and positive energy for improvements on all fronts!

    ReplyDelete
  4. Liz Megnin NeilMarch 4, 2022 at 2:41 PM

    God bless Molly and her determination! Keeping her and you, Aaron, and Xander in prayer.

    ReplyDelete
  5. george theriotMarch 4, 2022 at 8:45 PM

    So grateful to hear that Molly has such determination and that you and Aaron are doing all that is in your power to advocate for best treatment options. Sending hugs to all of you and a special shout out to Xander! We love all of you!!
    Xo-Theriots

    ReplyDelete
  6. UnknownMarch 5, 2022 at 10:21 AM

    Dear Molly - When I think of you, I see you on stage both in the Archimedes play and the Shakespeare play. You always light up the stage with a special sparkle, passion and humor. Life with its beauty, humor and blessings shine brightly in you. I am praying that the light within you, your generosity of spirit and your love for life will overwhelm the darkness of the leukemia cells. I picture them confronted with light everywhere they turn until they finally head offstage with the line, "Let's ditch this place. There aren't enough dark places for us to hide."

    Love, Ms. Erb (Judie)

    ReplyDelete

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