Mom's Battle Against AML
Donation protected
We've been on quite a journey these last few months. In April of this year, our mom was diagnosed with AML, acute myeloid leukemia. Routine blood work from her annual physical was “off” so her family physician referred her to the Hope Center in Boardman for more testing.
At the Hope Center, they ordered more blood work and a bone marrow biopsy. When those results came back they immediately sent us to the UH Seidman Cancer Center for even more testing. Mom was initially in Seidman for one week getting testing, blood work and another bone marrow biopsy done. The results were mixed. It was almost as if the AML was “so new”, it wasn’t showing true signs of AML. Some signs seemed to indicate CML, a chronic form of leukemia.
They decided the best course of action was to send her back home and have her do outpatient chemo at the Hope Center. They put her on a 7-day course and she was supposed to do three cycles of it – in May, June and July. She was tolerating it well, no hair loss or nausea, and still fully functioning.
The hope was that after the July cycle she would be ready for a bone marrow transplant. My mom's twin brother, Harry Selner, is a perfect match.
Everything changed on June 27. Mom had a follow-up appointment with her UH oncologist and she had bruising on her foot. It was a bit painful. The Dr. thought it might be cellulitis and admitted her back into Seidman to get checked out.
Mom was in Seidman from June 27 through August 3. Her bone marrow biopsy showed blasts (you need less than 5% blasts to be able to do a transplant) so the team there decided to put her on a 7-day cycle of a high intensity chemo. They called it “7 plus 3” because the first three days were a double dose of two different kinds.
This wiped her out; she lost her hair quickly, was physically exhausted, kept running a fever (they couldn’t figure out the source of that) and ended up in the ICU for a week. Her bilirubin was high and she was jaundiced, her liver and kidney functions were poor.
But the next biopsy showed 0% blasts! So the chemo worked! Her white blood count was still high but starting to trend down. We were hopeful.
She was sent to UH's Hanna House for rehab on August 3. Again, that chemo wiped her out and she was pretty debilitated. She went into Hanna House walking only 20 feet, and was contact guard to min assist on her modalities. Over the course of the past couple weeks, I noticed she was regressing. Her left knee, which has osteoarthritis, was really swollen. Not uncommon to happen to her when she's very active but the swelling wouldn't subside and she was in a lot of pain.
Today, she is max assist on just about everything and her cognitive abilities and focus are waning too. She’s regressed in every aspect of her therapy.
We had a follow-up appointment with her UH oncologist Thursday and learned why she's regressing. The results of her most recent testing were not good and the blasts are back.
Her team at UH wants to admit her back into Seidman for a 10-day cycle of decitabine with the best case scenario being the AML goes into remission and we can eventually do the transplant.
But they said the “more likely scenario” is that this round of chemo keeps things "in check for a while." I asked what “a while” meant and was told it could be “several months, a month, a year."
Not acceptable.
As recently as June 27, mom was independent, living alone on the 3rd floor of an apartment building, driving herself. “Nana” also babysat her very active 5-year-old grandson 3 days a week, went to card club, went out to eat with her friends and family regularly and walked her neighborhood almost every day. Even while undergoing the treatments at the Hope Center, mom was still doing all of the above. Very healthy and active for a 69-year-old recently diagnosed with AML!
We asked mom what she wanted to do and she emphatically said, "I WANT TO LIVE!"
I reached out to the Cleveland Clinic and we are going to transfer her there. They will evaluate her and see if an alternate treatment plan/prognosis is available.
Needless to say, her medical bills are through the roof and still mounting. Between my work life, home life, and traveling to Cleveland 2-3 times a week - I don't have time to organize a fundraiser.
My cousin suggested creating a GoFund Me page. So we did. Please join my
mom in this battle by donating. Any amount would be greatly appreciated, no matter how big or small.
And please share this with our family and friends who aren't on Facebook.
Prayers and positive thoughts are especially welcome and needed also.
On behalf of my mom - Thank You ❤️
At the Hope Center, they ordered more blood work and a bone marrow biopsy. When those results came back they immediately sent us to the UH Seidman Cancer Center for even more testing. Mom was initially in Seidman for one week getting testing, blood work and another bone marrow biopsy done. The results were mixed. It was almost as if the AML was “so new”, it wasn’t showing true signs of AML. Some signs seemed to indicate CML, a chronic form of leukemia.
They decided the best course of action was to send her back home and have her do outpatient chemo at the Hope Center. They put her on a 7-day course and she was supposed to do three cycles of it – in May, June and July. She was tolerating it well, no hair loss or nausea, and still fully functioning.
The hope was that after the July cycle she would be ready for a bone marrow transplant. My mom's twin brother, Harry Selner, is a perfect match.
Everything changed on June 27. Mom had a follow-up appointment with her UH oncologist and she had bruising on her foot. It was a bit painful. The Dr. thought it might be cellulitis and admitted her back into Seidman to get checked out.
Mom was in Seidman from June 27 through August 3. Her bone marrow biopsy showed blasts (you need less than 5% blasts to be able to do a transplant) so the team there decided to put her on a 7-day cycle of a high intensity chemo. They called it “7 plus 3” because the first three days were a double dose of two different kinds.
This wiped her out; she lost her hair quickly, was physically exhausted, kept running a fever (they couldn’t figure out the source of that) and ended up in the ICU for a week. Her bilirubin was high and she was jaundiced, her liver and kidney functions were poor.
But the next biopsy showed 0% blasts! So the chemo worked! Her white blood count was still high but starting to trend down. We were hopeful.
She was sent to UH's Hanna House for rehab on August 3. Again, that chemo wiped her out and she was pretty debilitated. She went into Hanna House walking only 20 feet, and was contact guard to min assist on her modalities. Over the course of the past couple weeks, I noticed she was regressing. Her left knee, which has osteoarthritis, was really swollen. Not uncommon to happen to her when she's very active but the swelling wouldn't subside and she was in a lot of pain.
Today, she is max assist on just about everything and her cognitive abilities and focus are waning too. She’s regressed in every aspect of her therapy.
We had a follow-up appointment with her UH oncologist Thursday and learned why she's regressing. The results of her most recent testing were not good and the blasts are back.
Her team at UH wants to admit her back into Seidman for a 10-day cycle of decitabine with the best case scenario being the AML goes into remission and we can eventually do the transplant.
But they said the “more likely scenario” is that this round of chemo keeps things "in check for a while." I asked what “a while” meant and was told it could be “several months, a month, a year."
Not acceptable.
As recently as June 27, mom was independent, living alone on the 3rd floor of an apartment building, driving herself. “Nana” also babysat her very active 5-year-old grandson 3 days a week, went to card club, went out to eat with her friends and family regularly and walked her neighborhood almost every day. Even while undergoing the treatments at the Hope Center, mom was still doing all of the above. Very healthy and active for a 69-year-old recently diagnosed with AML!
We asked mom what she wanted to do and she emphatically said, "I WANT TO LIVE!"
I reached out to the Cleveland Clinic and we are going to transfer her there. They will evaluate her and see if an alternate treatment plan/prognosis is available.
Needless to say, her medical bills are through the roof and still mounting. Between my work life, home life, and traveling to Cleveland 2-3 times a week - I don't have time to organize a fundraiser.
My cousin suggested creating a GoFund Me page. So we did. Please join my
mom in this battle by donating. Any amount would be greatly appreciated, no matter how big or small.
And please share this with our family and friends who aren't on Facebook.
Prayers and positive thoughts are especially welcome and needed also.
On behalf of my mom - Thank You ❤️
Organizer
Cynthia Catheline
Organizer
Youngstown, OH
