Karla’s Story

Site created on July 15, 2022

Written by Karla's daughter Melissa:

As many of you know, my mom fell in January 2022 and suffered a compression fracture in her low back. While in the hospital, she had some abnormal labs that we were told she could follow up on after she healed. She has always been anemic for as long as I can remember so we were not very concerned. 

She continued to have severe pain during her recovery so an MRI was ordered that showed “red marrow” on the scan which is often the indication of a bone marrow disorder.  She underwent a very painful bone marrow biopsy in May and she was referred to Hematology/Oncology where we were initially told she had Chronic Myeloid Leukemia. Although it is cancer, this disease is treated with a long term chemo pill and has no cure, but we were told it is very slow growing and manageable  so we felt some relief. The oncologist ordered additional labs and more testing on her marrow.

When she returned to the clinic in early June, we were shocked to learn that the additional testing actually confirmed a more serious diagnosis. My mom has myelofibrosis, a rare form of bone marrow cancer.  Myelofibrosis is an uncommon disease of the bone marrow that disrupts the body’s normal production of bone marrow. Excess red blood cells are produced in the marrow and collect in the spleen. Myelofibrosis causes extensive scarring in the bone marrow that results in severe anemia and fatigue. 

The only cure for myelofibrosis is a stem cell transplant (SCT).  Her oncologist has been really great and spent so much time explaining everything to us. He wanted her to get a second opinion which we really appreciated. She was sent to Banner MD Anderson Cancer Center. We absolutely LOVED the doctor there and he spent so much time with us once again.  She has had such good doctors and healthcare! The MDA doctor confirmed the diagnosis of myelofibrosis. He felt she was a candidate for a stem cell transplant with the hope of cure. He even introduced her to a patient who happened to be in the clinic when they were there who was around her age who had a stem cell transplant done 4 months ago and was doing very well post transplant.

Now for the scary part….. there is a 10-15% mortality rate with the stem cell transplant. It is considered incredibly risky which is why the doctor recommended she wait for her cell counts to get worse before doing it. Right now her labs are stable with the exception of a high red cell count.

MD Anderson has began a workup for transplant and she met with a SCT coordinator. The first choice donor for transplant is sibling males (pregnancy makes female donors less likely to engraft). Unfortunately, my moms two brothers are not considered young enough to donate. Her sister has cancer and has had pregnancies which makes her not a donor. The next choice would be half-match, which would be my brother, but a half match is typically not a good enough match. She likely will end up with an unrelated donor or umbilical cord stem cells. They are currently searching for a donor. 

So what happens during the transplant process and why is it so risky? 

My mom will first spend 6 days in the hospital getting strong chemotherapy to destroy her bad bone marrow and immune system. She was warned that this treatment regimen is brutal . There was no sugar coating how bad it is.

After her bad bone marrow is destroyed, she will receive the new donor stem cells and then spend another 3 weeks in the hospital while the transplant engrafts (takes over her bone marrow) and to watch for rejection, graft-versus-host disease, and other complications, etc. 

She will then be sent home in isolation for 100 days to wait for her brand new immune system to rebuild. She will have to be very careful not to be around people or germs until her immune system is strong enough to fight off infection.  At 6 months after SCT, she will start receiving all of her childhood vaccines over again, her COVID vaccines, every vaccine because her new immune system will not have any protection in it.  SCT is a long process and can be up to a year before patients start feeling like themselves.

For now, we are waiting for her labs to change before she would actually do transplant.  Of course it will also depend on finding the right donor too.

We have set up this page to keep everyone in the loop so my parents don’t have to keep explaining the situation over and over to loved ones which can be very emotional and exhausting for them. Feel free to reach out to me with questions and my mom would love to hear welll wishes as she starts this process. Please keep them in your prayers as my mom starts this journey to a cure! 

Newest Update

June 15, 2023 - Awesome Update!

Journal entry by Melissa Wickstrom-Sirek —

Last week, my mom had blood work and a CT scan to check her spleen size. We were shocked to find out that her Hemoglobin was 11.8! That is the highest it has been in probably 15 or 20 years! The new medication, Vonjo, is definitely helping raise her hemoglobin and as a result she has less shortness of breath and more energy. Her spleen has also shrunk 1 cm in size which is a really good result! She had a tough time taking Vonjo at first with the chemotherapy-type side effects but she is tolerating it well now. She’s had great results on it in a relatively short period of time. She is doing so well overall that her doctor said she can switch to every 2 month follow up visits instead of every month! 

My parents kicked off the summer in May spending 3 weeks in Grand Forks at the University of North Dakota with my son Josh while he did required in-person lab classes. They stopped at Mount Rushmore on the way there and at the Veterans Cemetery in Bismarck on Mothers Day. On their way home from ND, they stopped in Fort Worth, TX to visit my brother Jason and his family.

My niece Paige came back with my parents to Arizona for a week. Sarah also spent the week at my parents house with Paige. They went mini-golfing, to a trampoline park and spent a day at my house swimming and had a sleepover. They also went for mani/pedis and to the movie The Little Mermaid. It’s a good thing my mom has more energy because the girls were keeping her busy! 

Jason, Andrea and Carter are coming this weekend to pick Paige up. We are planning a BBQ pool party for Fathers Day and my parents are thrilled to be able to see all of their grandkids together! 

We are thankful my mom continues to do so well and are grateful she finally found a medication that is giving her good results. It is hoped that this drug will help push off needing a stem cell transplant longer.

Thank you for always checking up on my mom and for all of your prayers! Happy Summer!  

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