One More Day

I asked Michael to write the big portion of this blog because he has a better understanding and better ability to explain the medical stuff than I do at the moment. He gets straight to the point and it hits hard.

“We received T-cells on 12/7.

On 12/18 we didn’t get the answers that we felt comfortable with. Over that weekend concern grew. 12/21 we decided to come home and meet with our Cincinnati team on Wednesday 12/23. She was not in good shape and I was impatient. They pumped her full of pain meds and gave us hard news to swallow (the pain meds were unintentional to knock her out the way they did). The news was that we were out of data backed options. Good bye to, “ this is shown to work in patients” and making to her birthday (2/18) was not an option.

Now, normal white blood count is between 4,500 to 10,000. When Elizabeth got to the hospital Wednesday 12/23 her white blood count was 44,500. Her white blood count was practically doubling every other day. On top of that, her blast % (which is the % of bad white blood cells) was 93.3%.

We started on an oral chemo that day to get us through Christmas and then have more of a discussion that Monday. My world was falling apart.

On Monday 12/28 we started an IV chemo and an immunotherapy drug. Here is where it may get confusing but let’s do it. The T-cells were not fighting the bad cells and we have no treatment data. The bad cells might have a barrier on them causing the T-cells not to attack. In comes the immunotherapy drug to take down that barrier and let the T-cells do there thing…. in theory.

There are three ways this can go, 1. The barrier comes down and the T-cells fight the bad cells. 2. The barrier comes down and the T-cells just socialize with the bad cells or 3. The barrier comes down and the body goes into regeneration mode and speeds up the creation of bad cells. We also decided to do radiation on top of that to possibly “Wake Up” the T-cells in case they were napping. Elizabeth has also had good results from radiation to decrease the lymph node size but there is always a cost.

As of today, 1/6/21, there have been changes and everything comes with a cost. Her white blood cells have went down dramatically to the 6,000 range but her blast % is still at 87% (It’s better to have a low number of bad cells than a high number of bad cells). The radiation has decreased the size of the lymph nodes and we will see if that woke up some T-cells. The thought is that the immunotherapy drug is doing something but we are still questioning how much. That will be answered soon. This is good compared to when we came home and we are catching back up but slowly.

Now the cost, the chemo hurt the cells in her throat, then mix in targeted radiation, and you receive an unbearable pain (think canker sores down your throat). It hurts her to eat, drink, and even talk. She is in enormous pain due to the lymph node size and the location and she is on pain meds that only really take the edge off.

Thank you brilliant team and the prayers from the masses. We now can step back and breathe a little. We are taking it week to week now and cherishing family time.”

I’m dying. I know I’ve said that before but, without treatment they have decreased my estimated survival from months to mere weeks. This is part of why I’ve been silent for so long. I still haven’t processed it all. I don’t know how to answer questions or what to say in response to well wishes. I Thank you for caring about my family. Truly. Please keep us all in your prayers. It’s going to get ugly from here on out and if choose to stop reading updates, I’ll completely understand.Our current goal is to make it to Ryan’s Birthday. (2/18) By make it, I mean be able to enjoy the day with my sweet girl. During these next few weeks we will be looking for a clinical trial that I may be eligible for, and/or treatments that will slow the leukemia/lymphoma growth to give me one more day with my family. Just one more day.

I’m going to ask you to consider one thing tonight. I’ve talked a lot about how words have meaning beyond our intentions at times. When the time comes, please don’t say “she lost her battle to cancer.” It’s a tie at best! See, if there truly were a battle with winner and loser, then my will power, determination, tenacity, or any of my other fighting qualities would have me on the other side of this. To say that I lost my battle indicates that there is something I could have done to overcome the malignant cells that are ravaging my body. Cancer will never be the winner. Say I lived a beautiful life. I loved Jesus and family and friends. Say I died from a desease that kills well over half a million people each year. Say I didn’t get enough time with the ones I love. Even if I got one more day, it wouldn’t be enough.

~Elizabeth~