Mostly Steady

Dear Family and Friends,

Molly has been mostly steady this past week. She has leg pain every day, so she uses medications to control it (Tylenol, Ativan and morphine). The leg pain is most likely due to the leukemia and doesn't really go away. She has her ups and downs in dealing with this and sometimes it is overwhelming, as are taking the pills and doing all of the day-to-day things that she has to do to survive.

We have been discussing different options with Molly as she continues down the path, although we just have no clear picture. We know we must treasure every moment now, while we have it. Well that is just fine and dandy to want to do, but what does that mean for our family? What do we choose to do today and tomorrow? Honestly, I feel like I haven't been doing enough for Molly outside of trying to stay on top of her care... but then when we talk about things that she may want to do or see, there are all of these limitations that make it seem overwhelming or unreachable. I just really wish this wasn't the case. I really wish that this had never happened, that Molly could go to school and be stressed out about choosing her classes for next year and hanging out with her friends. But instead, we are stressed out about how much water she drank yesterday. UGH this sucks. As everybody else's lives continue, Molly is stuck. Stuck in a crappy situation. It is stressful and depressing.

Thankfully, there are a lot of things to look forward to in the coming months with Xander graduating and summer upon us, but will Molly be able to participate? Will we be able to participate? All of the unknowns kind of leaves us lost in what to do or how to move forward. And let's pray there is not another Covid wave. We will though, still do our best to make the most of each opportunity when we are able and will continue to pray for a miracle!

Through all of this, I do try to maintain a sense of peace, especially seeing the ravage of the war on a daily basis, I am grateful for the days we do have even if they are in a crappy situation. There are so many other bad things going on, I will continue praying for those who have lost loved ones and did not get to say good bye.

Thank you so much to those of you that have communicated Molly's story to the amazing people at University of Rochester. Yesterday, we wrote (Aaron wrote, I edited) and sent a letter explaining Molly's medical situation to one of the team members of the micheliolide study. This is a novel therapy that could potentially help AML patients some day. Our plea to them is to have Molly be one of the first humans that they try this therapy on, as it looks very promising.

An update on the CART cell therapy - there is still a possibility of this being an option, she will be evaluated again in early April to see if she can qualify for one of the trials. 

Her lung capacity continues to improve and she does not need oxygen during the day. We have been able to turn down her CPAP settings as well. She is on chemo for a couple more weeks. Dr. Walling says they don't expect to see full results until after 3 rounds, but she is showing some (temporary) stability in her numbers already, so that is good.

WBC: 1.3
She did not need RBCs today!
Blast %: 77
Absolute Blast Count: 1.0
ANC: 0

Dexter waiting for Molly to get home

Thank you all for your prayers and support.

Peace and Love,
Emilie