Leah Wiebe and her family recently received the extremely disappointing news that the first round of her treatment in the U.S. failed.
She and her husband Ryan had a decision to make: whether to return home and say goodbye or stay in Seattle where she is receiving treatment and try the second round of CAR-T, which has a 1 in 9 chance of succeeding.
The family’s post on Facebook is below:
September 4 update: When Leah arrived in Seattle on July 19th for the CAR-T treatment we knew that, barring a supernatural healing, this CAR-T treatment was Leah’s last chance to beat the leukaemia that was rapidly taking over her body and giving her just weeks to live. Her body was producing almost no good blood cells and most of her blood cell production was leukaemia cells.
Over the next couple weeks, as they prepared Leah’s body to receive the CAR-T treatment, she was extremely exhausted from the ravaging effects of the leukaemia in her body. It was taking a huge toll and the doctors were essentially keeping Leah alive with various chemotherapies and many infusions of the blood cell products that her body was not producing on its own.
On August 10th Leah received the long awaited infusion of the CAR-T cells that had been re-engineered and weaponized to kill the Leukaemia in her body. Because Leah’s leukaemia was so advanced and her body was so full of leukaemia cells the Fred Hutch team gave her the smallest effective dose of CAR-T cells.
One of the most dangerous side effects of the CAR-T treatment is called Cytokine Release Syndrome (CRS). In CRS the organs of the body are overwhelmed by the toxic waste created by the extremely rapid rate at which cancer cells are being killed by the CAR-T cells. CRS is one of the main reason many patients who receive CAR-T treatment are hospitalized and some die.
After Leah’s CAR-T treatment we waited for the potential side effects the doctors told her she would likely have and any sign of CRS, but NOTHING happened. The doctors and research scientists monitored Leah’s condition and the leukaemia closely for two weeks.
At the end of that two weeks they gave Ryan and Leah the devastating news that the CAR-T cells had failed to activate in her body and the Leukaemia cells in her body not only had not been killed, but the leukaemia had continued unchecked. They also shared that, with the failure of the first dose of CAR-T cells, the chances of a second infusion of a higher dose of CAR-T cells being successful were significantly diminished. Statistically, they said, a second infusion is successful in only 1 in 9 patients.
On top of that they also told Ryan and Leah that they were doubtful that her body could hold out for another few weeks until the second CAR-T infusion could be administered. With that they gave Ryan and Leah some choices: stop the treatment and go home to be with your family and you may live for a few weeks, or take a chance on trying to get to the second CAR-T treatment.
As you can well imagine, this was very devastating news to all of us. We could not share this with you all because Ryan and Leah, and our family, had to come to terms with, not only the disappointment of the failure of the treatment, but the gravity of the situation - leave Seattle and live a couple weeks, maybe, or stay and face the very slim chance that the second infusion will succeed, but face the possibility that she might not make it too the next CAR-T infusion.
Ryan and Leah chose to go for the chance that the next CAR-T treatment will succeed.
This has been an extremely hard week for all of us. It is particularly hard when hope has been deferred over and over. Each treatment from the beginning has held out hope that it may be the one that destroys the leukaemia and enables Ryan and Leah, and our family to return to our lives. But as each treatment came with hope and went with failure it has become increasingly disheartening.
With each failure the normal hopes and dreams that we all take for granted seem to slip further away - family times, love, friendship, laughter and even struggles of life, loving the moment spouse walks in the door and seeing what an amazing person they are, first days of school, comforting kids through the scrapes and falls, encouraging them and believing in them for when others can’t, all that comes with seeing them grow up, making every small victory seem like it is a day of champions for them, watching them become all they were created to be and helping them attain it, watching them fall in love, and become good men, and too many other dreams to count.
Then the aching questions. Will my children remember me if I go? I don’t want to go. Why do I have to go now? What will happen to my family, my boys? God would you turn this around, please? You have taken me so far with so many miracles. Is this the way this is going to end? I want my family close if it is, but if there is a way, please make a way for me to live.
So you see, friends, why we have not been able to share all this with you before this.
Today, as we have on any day when Leah is feeling up to it we will try to have a normal day, even though such a day is impossible with leukaemia. But we will try to just have a normal day with normal things in it, just the same.
MAYBE YOU ARE WONDERING WHAT YOU CAN DO:
You can pray for Leah and for our family. There is a God factor that we have seen and will yet see. We are still pressing forward toward to the last CAR-T infusion. Maybe Leah will be the 1 in 9.
If you would like to send Leah and Ryan your thoughts, prayers and well wishes please DO NOT TAG THEM IN MESSAGES OR POST UPDATES, instead comment on this update on the leahsfightisourfight Facebook page. It is impossible for Leah and Ryan and us to respond to questions, texts and messages at this point.
Because of the large community who have surrounded Leah with love and support the number of notifications her Facebook page has received is overwhelming. COMMENTING ON THIS UPDATE ON THE LEAHSFIGHTISOURFIGHT PAGE WILL ALLOW Ryan and Leah to access your comments when they are able.
Thank you again for all the ways you all have shown your love to Ryan and Leah and our family.
Much gratefulness…
Ryan and Leah, and the Wiebe and Rosenau families