My mom had leukemia. What saved her and how you can save a life too!
I am a Physician Assistant and a Health & Wellness Coach by profession but today, I am talking to you as a daughter who has seen her mother’s body ravaged by Leukemia, and who, against all odds survived (Alhumdulillah).
Many of you may have heard of “Leukemia ” without full understanding what these particular cancers are.
Leukemia is the general term used to describe four different disease types called:
- Acute Myelogenous Leukemia (AML)
- Acute Lymphocytic Leukemia (ALL)
- Chronic Myelogenous Leukemia (CML)
- Chronic Lymphocytic Leukemia (CLL)
The terms lymphocytic, lymphoblastic, and myelogenous are used to describe the different cell lines affected, but all of these cancers originate in the bone marrow.
People can get Leukemia at ANY age.
In fact, according to the statistics, someone is diagnosed with a blood cancer EVERY 3 MINUTES!!
An estimated combined total of 171,550 people in the US are expected to be diagnosed with Leukemia, Lymphoma or Myeloma (all diseases that involve the marrow or blood lymphatics system) in 2016 and an estimated 1.2 Million Americans are living with or are in remission from Leukemia, Lymphoma or Myeloma.
These blood cancers now account for 10% of all new cancer diagnoses in the US.
Leukemia Hits Home
Today, I want to focus on Leukemia as this hits very close to home for our family. About 7.5 years ago, our family was dealt a very heavy blow.
My mother had been feeling tired and had gone to the doctor for a check-up because this was a fatigue and exhaustion unlike any other. It had been several months since wrapping up the wedding festivities of my brother, the last of the siblings to get married – so she was done with all the running around that came with wedding preparations.
It had been several months since wrapping up the wedding festivities of my brother, the last of the siblings to get married – so she was done with all the running around that came with wedding preparations.
She was convinced it was going to be a thyroid condition or some vitamin deficiency.
She had some routine blood work and was told some of her blood counts were “a bit off” and that she should see a haematologist very soon.
She visited the haematologist and had some more blood work and was told she needed to get a bone marrow biopsy so that we could find out the cause of her dwindling cell counts.
I went with her to the haematologist to review the biopsy results, and we felt like all the wind was knocked out of our bodies when we heard “LEUKEMIA”.
Mom’s blood counts were dropping and it was only a matter of time before all the immature cells that were in her bone marrow spilled out into the rest of her body and she would be in a full “blast crisis” and having fevers and chills and bone pain from the overactive marrow activity due to the cancer cells.
She went into the hospital the next day and all preparations were made to start the chemotherapy to try to kill the cancer cells.
The next 6 months were torture on mom’s body as the chemo ultimately did work to attack the cancer within her marrow – but along with the cancer, her entire immune system was wiped out.
You see, your body’s white blood cells, the cells that attack and protect your body from infections big and small, come from your marrow.
Looking for a Bone Marrow Donor
As mom fought her way through the chemo, the team and our family started our search for a bone marrow donor.
In order to be cured of her cancer, mom needed to get healthy bone marrow cells (stem cells) to take seed into her own marrow and then continue to build her new immune system through those stem cells.
There is the option of a stem cell transplant from your own cells or a transplant from a donor – due to the genetics of mom’s cancer, she would likely have her cancer return to wreak havoc on her immune system again if she were to get transplanted with her own cells.
And so, the search for a donor began ….
A Very Aggressive Cancer
Mom was diagnosed with AML, a very aggressive and often fatal form of leukemia.
In fact, with all the strides we have made in treatments and survival, only an expected 26% of AML victims are expected to survive.
The survival rates are much better for those diagnosed at under 15 years of age (approximately 66%), but mom was in her 50’s – not “old” in any sense, but her chances for survival were slim unless we found a healthy donor match.
Searching the Bone Marrow Registries
The team immediately searched the National and International Registries – without success.
On any given day, over 6,000 men, women and children are searching through the national and international Bone Marrow Donor registries looking for a match to a potential cure.
The Match Registry has over 12 MILLION donors in their registry alone, as well as access to over 22.5 MILLION donors worldwide through partnerships with international registries.
And still, we did not find a match for mom.
22.5 Million Registered Donors Worldwide Yet No Match – Why?
You may ask yourself WHY?
Why, amongst all those registered donors, is there no match?
The answer lies in our genetics.
You see, in order to be a bone marrow match, you need not be of the same age, sex or blood type – BUT ethnicity plays a huge role.
Let me break down the racial distribution of the donors in the registry –
- Caucasians – 65%
- African American – 7%
- Hispanic – 10%
- Asian/Pacific Islander – 7% (South Asian – 3%)
- Native American – 1%
- Other/Multiracial – 4%
I want to focus on the highlighted South Asian representation within the registry because that is the group that the “desis” fall under, that is the group that my mom falls under.
Now take this 3% of the 12 Million donors registered, and then proceed to break it down even further by geographical ethnicity – because where we originate from ethnically plays a role in our genetics, and we are more likely to be a match for someone from our own ethnic background.
So my East African Asian mom had very little chance of finding a donor within the registry – I have been registered for 24 years and have yet to be contacted as a potential match for anyone.
Looking for a Donor continued…
Our family and the community rallied support and help donor registration drives to get more people registered in order to help mom and others fighting for a cure.
Registering to be a bone marrow donor is quite simple and painless – it only takes filling out a health questionnaire and a CHEEK SWAB!
There is no blood work involved, simply swabbing the inside of the cheek to collect cells that will be analysed and the data entered into the National Registry.
We held drives at our local mosque as well as other mosques throughout North America.
Family members and friends went to their local registry offices around the world and swabbed their cheeks.
We still did not find a match from the registry, but we knew that we were helping others in the future find a match by having more of our communities represented within the registry.
Finding a Match
Ultimately, mom did find a match – not one, but TWO matches from within her siblings.
Mom was VERY lucky.
Her parents were first cousins from both parents and this genetic marriage led to 2 of her 4 siblings being a perfect match for mom’s bone marrow.
My aunt travelled from the UK to come to the US (donors need not travel to the recipients, but my aunt wanted to be with her sister) and go through physical examinations and donate for mom’s transplant.
Progress in Bone Marrow Transplants
Science has come a LONG way from just a few years ago.
It used to be that in order to repopulate the marrow, you actually needed to harvest bone marrow surgically from a healthy donor that is a match and then give that marrow through a transfusion to the cancer victim.
Today, the vast majority of cases of Bone Marrow Transplants are done through Stem Cell Transplants.
The matching donor takes a medication to stimulate their healthy marrow to produce more of their own healthy precursor cells (stem cells) and then the stem cells are harvested much in the same way as a blood donation.
There is no surgery involved and the risks to the donor are greatly diminished.
A New Start
Alhumdulillah, mom received her stem cell transplant (through a transfusion, very much like a simple blood transfusion) after her entire immune system had been knocked out so as to eradicate all cancer cells from her body.
This left mom with a non-existent immune system that was a blank palate in order to take up my aunt’s stem cells and let them seed into mom’s marrow and proceed to create an entire new immune system for mom.
This transplant took place 7 years ago on October 14, 2009.
The road was rocky as mom and her immune system were literally like newborns.
She had to get re-vaccinated much like babies do and she had to take extreme precautions with food and everything within the environment as well as being on anti-rejection medications to improve the chances of her body not rejecting the foreign stem cells.
With the grace of God and the prayers and support of the community, mom has celebrated her 7th RE-birthday, because she truly was given new life on October 14, 2009.
We are put on this Earth to help our brothers and sisters, to help our community.
What better gift than that of life?
Many minority communities are grossly under-represented in the national registries, and much of that is because we are not aware of the treatments and benefits.
It literally takes less than 2 minutes to swab the inside of your cheek and complete a simple questionnaire.
You may never be called upon, but there is a chance that you can help a fellow human being live another day.
My mother has been granted 7 years (and more to come insha-allah) where she has seen the birth of 5 more grandchildren, she has been able to do community service and she has been the mother we all love.
Consider Registering as a Bone Marrow Donor
Please consider becoming a part of the bone marrow registry.
Listed below are several resources/sites with more information on leukemia and the donation process.
- Leukemia and Lymphoma Society- https://www.lls.org
- South Asian Marrow Association of Recruiters (SAMAR)- http://www.samarinfo.org
- Be The Match (National Donor Registry) – https://bethematch.org
Author: Shaheen Lakhani
“I am known as the Fithijabi on Facebook and my mission is to inspire and educate the community at large towards a healthier and more fulfilling life. I am a Physician Assistant and a Health & Wellness Coach by profession. But today, I am talking to you as a daughter who has seen her mother’s body ravaged by Leukemia, and who against all odds survived (Alhumdulillah). I am honored to partner with Sr. Kate (of Healthy Muslimah) to share some little-known knowledge about Leukemia and what we can do together as a community to help our brothers and sisters improve their chances of survival. Facebook: www.facebook.com/fithijabi