DECEMBER UPDATE

Mom and dad came down to TX with every intention of participating in the Car-T trial. Unfortunately, that trial has continually been delayed by the pharmaceutical sponsor. With each delay she tried different forms of treatment (heavy chemo) to bridge the gap of time to the next trial start date. She even was told she could participate in a different trial for a short time until Car-T opened. She went through extensive and invasive pre-trial testing. On the day she was to begin treatment she was told one blood marker was slightly off and she couldn’t participate. She had stopped all treatment for three weeks for a “washout” period as well. It’s very hard to pick yourself back up from not only the disappointment, but the setback your body goes through from not getting any treatment.

Since then, mom has started another form of heavy chemo (this specific cocktail they call the “red devil”). It’s been very hard on her…. She has been in the hospital for almost a week with fevers from neutropenia (neutrophils are the blood cells that fight infection in the body) as well as a skin infection from all the open sores/tumors on her body.

So what’s the plan…..

My siblings and I flew down to TX to be with our parents during this tricky time. We spoke to her many teams of doctors and told them mom’s wish is to come home. We have booked mom and dad first class tickets to fly home commercial with us on Thursday December 7th. Mom likes to add that, “Lindsay and Tirah are in the back of the plane” :-). Unfortunately, given the long distance from TX to PA, we weren’t able to make any private plane rides work. We want to thank EVERYONE who reached out within their own networks to try and make this happen. It’s unbelievable the amount of people who offered whatever support they could for a private flight. Time is of the essence to get mom home while she’s stable enough to fly therefore, commercial it is.

What this means…..

Lindsay, Garret and I have packed up their apartment in one day! We have made all the necessary arrangements for mom and dad to come home as safely as possible via the commercial flight. They will not be returning to TX unless mom gains her strength back AND the Car-T trial actually opens. While she’s home, she will receive palliative care until Car-T.

We ask for prayer for

To say my mom and dad have some amazing friends is the understatement of the year. To ALL of you who continually beg for something to do and all the prayers and support, they thank you (WE thank you).

MAY

Hello! On behalf of Kris Deal, our mom, we have decided to put together a GoFundMe page while our parents are seeking care in Texas for mom's Lymphoma. This is solely due to so many people reaching out asking how they can help support our parents from afar.

Here is our mom's story: Mom was diagnosed in 2019 from a small dot on her right leg (which we thought could’ve been a tick bite). This turned out to be mycosis fungoides otherwise known as cutaneous T-cell lymphoma a very rare and incurable cancer. We were told that she was stage 1A and that they do a very good job managing this to keep her 1A.

University of Pennsylvania is one of the largest hospitals in the country that deals with this especially rare disease. In the many years the doctor had specialized in this, he had only seen two people out of the hundreds and hundreds of patients from all over the world that progressed to stage four. Unfortunately, in three short years and one bout of COVID-19 later, mom has progressed to stage 4B, which is terminal. The only possibility of recovery is through stem cell transplant in which they have to clear her of the disease and put her into temporary remission to proceed with the transplant.

In short, since April of 2023, our parents have been renting an apartment in Houston, Texas seeking care at MD Anderson. The University of Penn could not make any more progress (after many rounds of different chemos). All MD Anderson patients with this disease are those that have not responded to chemotherapy or stem cell transplants and have nothing other than clinical investigative trials to potentially help them.

In the two months they've been in TX, the doctors there have recognized how rapidly mom's disease is progressing. So much so that she was 12th in line to get into a clinical trial and they bumped her up to first place. There is much that is unknown in most of these trials, and if you've been following our Facebook updates, she is now slotted for a trial in July. We have hopes of that trial putting her into remission alongside additional therapies to eventually get her into stem cell transplant as that is the only way to potentially cure this disease. In the meantime, she has started new chemo infusions and daily chemo pills to bridge the gap of time to July.

We ask that you share mom's story for the sole purpose of receiving prayer. Our pastor once said, "If I had the chance to be given one million dollars OR have the guarantee that one million people were praying for me, I'd a thousand times over choose prayer." We all know how powerful prayer is and covet any and all of your prayers. It's with a grateful and sincere heart that we thank you in advance for your prayers and contributions (should you feel led) and for those who have already contributed (in so many different ways)!!