How do you find “measurable disease” when there isn’t any?

I had postponed writing this post, not trusting my interpretation of Eli’s latest scans. There’s pretty much always something on his scans that raise questions about whether something indicates the cancer is being active or not. The long and short of it is:

There is No Evidence of Disease (NED).

Even the eye tumor, which had caused us concerns, is no longer detectable. This was a great surprise and we are ecstatic. And, no, he hasn’t done radiation to the eye tumor yet–that starts tomorrow. There is still residual thigh tumor that appears dead, but can be used for “measurable disease” in a pinch so he can still qualify for the CarT cell trial in Houston. We meet with our doctors this week to discuss the plan. To try and answer in advance questions you all might have, I have prepared a FAQ section in this post.


Is Eli’s cancer cured?

No, unfortunately not being able to find evidence of disease does not mean that it is gone. The nasty little cancer cells are just hiding right now.

What is his prognosis?

Last May, when Eli’s cancer relapsed, we were told that 95% of kids die in 2-12 months. That was 11 months ago. I think I can safely say that he is among the 5% of kids that either die in 0-2 months or in >12 months. He is beating the odds in a good way. They still expect the disease to end in death, but we have been granted a miraculous reprieve at this time. We don’t know how long this will last.

If he’s NED, why would you still do the CAR T clinical trial?

CAR T cell therapy has been very successful in blood cancers, like leukemia. Treating solid tumor cancers like Rhabdomyosarcoma has been less successful so far because the T cells have a hard time penetrating and killing the cancer cells inside the solid tumors, only the outer layers are vulnerable. Since Eli’s cancer is mostly microscopic right now, we are hoping that the T cells will be more effective than they would be otherwise. We are very fortunate that Eli qualifies for the arm of a trial that has no waiting list, so we can start, hopefully, as soon as we finish radiating the former tumor behind his eye.

Since the tumor behind Eli’s eye is gone, why do you still need to radiate it?

Personally, I wish we could radiate all the areas that used to have tumors that haven’t been radiated yet. Because of the aggressive nature of Rhabdomyosarcoma, radiation and/or surgery is necessary to prevent it from returning, even though chemotherapy killed enough of the cancer cells to make it appear that the cancer is gone. Since the tumor behind Eli’s eye is near vital organs and can cause pain when it regrows, it is important to use radiation as local control in an attempt to prevent regrowth in that area. It will also sensitize the residual cells to the CAR T therapy, making it more effective.

When are you going to Houston and for how long?

Because of the public nature of this blog, I will not provide actual dates. I don’t even have dates yet. When we do go, we will make sure there is someone here to watch the house, so it won’t be empty (maybe our housesitter will even have a vicious dog). My guess is that we’ll go sometime in May and we will be there for about 4 weeks. It will be Eli and me for the first couple weeks, then Adam and the kids will join us for the rest of the time. I hope to find accommodations at the Ronald McDonald house at/near Texas Children’s Hospital for Eli and me. When the others join us, we will have to get an Airbnb or VRBO, unless we can figure something else out. I have been pricing out accommodations and saving money to pay for it. Until we have firm dates, I can’t make reservations or make any further plans.

What if you haven’t answered my question?

While I used to be omniscient, I have slowly lost that ability over the last several years. If I haven’t answered your question, please call, text, email or comment below.

9 thoughts on “NED?!


    Dear Elaine,

    Thanks for the information. You do such a great job of explaining things. Please give all of your family hugs and kisses. You are in our prayers.

    Love, Mom

    Liked by 1 person

  2. lloyd and Rochelle augustine

    That is such GREAT news! At times like this we will take as much as we can get and be delighted! SOOOOOO happy for you all–especially Eli!

    Love (and continued prayers)

    Mom A,GmA

    Liked by 1 person

  3. Sandra Lynch

    I couldn’t be happier fir you all!!! Such exciting news. I have been praying for you and your family for a very long time. God bless you all!
    P. S. Are you sure Ella is going to be 17?

    Liked by 1 person

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