If you are like most human beings, you take your health for granted. Especially when you are young, you don’t think about being sick or dying. You think you and your children are safe and will always remain healthy with the things that you do to safeguard your family.
I would imagine that’s what people think until they or their child is diagnosed with leukemia.
How Leukemia Has Touched My Life
This article will be a difficult one for this author to compose. My best friend of over twenty-seven years passed away in 2014 from leukemia. Barb had breast cancer in 2005, and after a lumpectomy, with several rounds of chemo, she was told she needed to take a medication to keep it from reoccurring.
Ironically, it was that same medication that caused her to form leukemia six years later.
She spent nine months inpatient in a hospital in Chicago fighting for her life. She nearly died twice because she contracted the flu and spent a month each time in ICU.
Barb was allowed to go home in the winter of 2014. She told me she had insisted on going back to her little house and her two beloved greyhounds. She said she just wanted to sleep in her own bed again.
Barb did not tell me that she had been sent home to die. I was shocked to receive a call in March 2014 that Barb was no more.
The grief of her passing still haunts me.
So, this piece will be very personal.
I will write this piece with all the facts that are available and also include the emotional elements as well from both the point of view of a loved one/caretaker and the person struggling with this scourge of humanity.
A Global Look at Leukemia
A study conducted by the Journal of Blood Disorders and Transfusion written in response to the Eleventh International Conference on Hematology & Hematological Oncology, 2018 gave the following insights about leukemia around the globe.
The report utilized information from country-specific registries from forty-five countries which included 90% of the world’s population. They found there were 53,000 cases worldwide of leukemia reported in 2016, and that by the year 2020 this number was estimated to rise to 56,000.
Most of the increased number of cases were expected to be in the Asia Pacific region and represented 55% of the increased incidence of leukemia globally.
In case you may be wondering why people living in the Asia Pacific region are at so much higher at risk of forming cancer, the answer is nuclear testing done by the United States.
Thousands of people were inadvertently exposed to high levels of radiation back in the 1940s-1960s when bombs were detonated near where they lived.
What is Leukemia?
The most obvious area to tackle first is to explain what leukemia is and how it is diagnosed.
Leukemia describes many forms of cancer of the blood-forming tissues such as bone marrow and the lymphatic system. Some types of leukemia affect mostly adults and others form is primarily children.
Leukemia usually involves the formation of white blood cells which are vital to fighting infection and disease. They often will grow and divide in a standard way, but in some people, the bone marrow in their body begins to make abnormal white blood cells that do not function the way they should.
Symptoms of leukemia differ depending on the type acquired, but generically the following symptoms can be found. They are the same for adults and children.
- Fever or chills
- Persistent fatigue and weakness
- Frequent or severe infections
- Loss of weight without dieting
- Swollen lymph nodes
- Enlarge spleen and liver
- Recurrent nosebleeds
- Easy bleeding or bruising
- Excessive sweating at night
- Bone pain or tenderness
I think it is clear, these symptoms can be vague and can look like other diseases like the flu or the common cold.
Often a physician may discover leukemia by doing a routine blood test that comes back severely abnormal or because the symptoms do not go away.
Tests to Get a Diagnosis of Leukemia for Adults and Children
The first procedure people undergo to confirm that leukemia is present is a physical examination. A doctor will examine your skin looking for paleness and your lymph nodes to see if they are enlarged. He/she will check your liver and spleen for the same reasons.
Further blood tests will then be ordered to see if you have abnormal levels or red or white blood cells or platelets, the tell-tale signs of leukemia.
If all the evidence points towards leukemia, a bone marrow test will be performed. This procedure isn’t pleasant but is vital to give a definitive diagnosis.
A bone marrow test involves removing a sample of bone marrow from the hip bone using a long, thin needle. This material will be taken to a laboratory where it will be examined for leukemia and from these results treatment options can be determined.
What we shall examine in the next sections is the most common type of leukemia that affects both adults and children.
There are many more types of leukemia, but I cannot cover them all today. Perhaps in further articles, we can present to you the other types as well.
Chronic Lymphocytic Leukemia
The most common type of leukemia found in both adults and children is Chronic Lymphocytic Leukemia (CLL). CLL begins in the cells that are meant to become white blood cells (lymphocytes) in the bone marrow, but something goes awry.
For reasons that are still unclear, some of the cells become cancerous, and when they enter the bloodstream they are spread throughout the body.
Chronic Lymphocytic Leukemia builds slowly, and the person often has no symptoms for upwards of two years. Meanwhile, the cancer cells grow in the lymph nodes, liver, and spleen.
In CLL, the abnormal blood cells now spread all over the body, cannot fight infection as well as normal ones and build up until they crowd out the normal ones in the bone marrow. Although people who have CLL may have years before they require treatment, this type of leukemia is notoriously difficult to cure.
Doctors agree that there are two different types of CLL. One type grows slowly, and treatment can be put off for years, the other grows faster and is more serious requiring immediate treatment.
The latter form is what my friend Barb acquired.
Treatment for CLL
The only treatment available right now is chemotherapy that involves anti-cancer drugs taken either orally or injected into a vein or muscle. These strong medications kill or control cancer cells in all parts of the body and can keep cells already present from spreading further.
Chemotherapy is given in cycles with each treatment being followed by a rest period to allow the body time to recover. These drugs attack cells that are dividing quickly, a handy tool when fighting cancer, but they can also affect cells in the bone marrow, lining of the mouth, hair follicles, and the intestines.
Thus, the well-established side-effects of chemotherapy.
The side-effects of chemotherapy depend on the types of drugs that are given and the length of treatment but may include:
- Hair loss
- Mouth sores
- Appetite loss
Low blood counts, also a side-effect of chemotherapy can mean a risk of infections because of low white cell counts. Also, a lack of blood platelets will cause easy bruising and bleeding and fatigue from a deficiency of red blood cells.
While these side-effects are short-term, they can be deadly because they leave the person having them vulnerable and weak.
Every time Barb called me from the hospital she sounded weaker and weaker. I knew she was in trouble, but she tried to sound upbeat and even offered me encouragement.
The Causes and Risk Factors for Leukemia
The exact triggers for the formation of leukemia are unknown. However, it is believed that it appears due to blood cell mutations involving their DNA inside each cell that is altered. These alterations give the forming blood cells the incorrect instructions, and they grow without the ability to die.
Because the cancerous blood cells do not die off, over time the healthy cells are crowded out, and that is when the disease is first noticed and becomes deadly.
There have been some risk factors found to increase a person’s risk of developing leukemia.
Previous cancer treatment. Certain types of chemotherapy and radiation treatments for other types of cancer make a person at risk for developing cancer later. If you remember, this is what happened to my friend Barb.
Genetic Problems. Some genetic abnormalities seem to play a role, such as Down syndrome.
A family history of leukemia. If a member of the family has been diagnosed with leukemia, the risk of a person acquiring leukemia is increased.
The Human Side of Treatment for Leukemia of Any Type
In this section, I felt we could examine the very human side of the equation when it comes to treatment. Although I have never undergone treatment myself, I watched in agony as Barb did and it is heart-wrenching from both sides of the aisle.
Patient Next Door sent out a survey to our family members who have lived with leukemia in their lives. To those of you who shared your information with us, we are eternally grateful.
From these insights and my personal experiences, we can paint a good picture of the emotions that accompany the diagnosis and treatment of leukemia.
Our six respondents ranging in ages from 15-49 both male and female responded.
The three most significant questions we asked were what daily struggles do you face? What are your deep-down fears and concerns? And what are your hopes and dreams for the future?
When asked their daily struggles the caregivers responded taking care of themselves, getting enough sleep and not worrying.
Of the people who were in treatment for leukemia their daily struggles included staying motivated, not having enough money, becoming homebound and depression.
Two common answers from both caregivers and patients tying them together were anxiety and fear.
When asked their deep-down fears and concerns they gave answers that broke my heart and reminded me so much of Barb.
A seventeen-year-old girl answered she was terrified she would die young and be forgotten. She also was fearful that she would not experience an actual relationship and that if she survived her children would have birth defects.
A sixty-nine-year-old woman caregiver answered she was afraid that her husband wouldn’t live and that would leave her alone. A similar sentiment was shared by a forty-four-year-old woman who stated her deep-down fears as merely, “everything.”
When it came to hopes and dreams for the future, I shed tears. A fifteen-year-old boy who was a patient said he wanted to grow old, get married, become fluent in another language and live abroad. Meanwhile, a forty-nine-year-old woman patient said she wanted to see her kids grow.
The most heart-wrenching answers, though, came from the others who left the question blank. I couldn’t help feeling that they saw no future and had given up hope.
Ongoing Research on Finding a Cure
The National Cancer Institute lists on the page I’ve linked some ongoing research projects to end the scourge of leukemia once and for all.
While there is no one foundational cure, many people who have received the diagnosis of a form of leukemia will live on.
At one time, when a child was given the diagnosis of leukemia, it was akin to a death sentence. Parents were told to take their children home, indulge their every whim, and wait for them to die.
Now children who have been diagnosed with Leukemia has a five-year survival rate of 50-85% depending on the age when they were diagnosed, and the type of leukemia involved.
Adults, on the other hand, have less of a chance of beating this killer. Nonetheless, survival rates have significantly improved over the past forty years, as 83% will still be alive five years after diagnosis.
What determines if a person will survive or not is the stage the disease is in when they begin treatment.
The scale runs from State 0, showing an increase in white blood cells, to stage four where the number of white blood cells is increased, but the platelets and number of red blood cells are low. They will also have enlarged lymph nodes, livers and/or spleens.
The higher the stage, the more the body of the patient is impacted all over and the shorter the person’s life expectancy becomes.
By the time Barb went to her doctor complaining of flu-like symptoms that would not go away, she was in stage four. They put her through the harshest of treatment regimens in a bold attempt to save her life, and she fought bravely.
Her fight was lost before she began treatment, but she was a survivor of childhood trauma and had the stamina to fight to her last breath.
There is Always Hope
If you are reading this article today and you or a loved one have received a diagnosis of some type of leukemia, don’t lose hope. The treatments that are available right now work for a fantastic number of people and new ones are being found every day.
The research will continue, and some promising things are just around the corner including targeted gene therapy that will be tailored to each person’s body and attack only the diseased cells and not the good ones.
That means fewer side-effects and greater survival outcomes.
Above all, never, ever give up! Facing a diagnosis of leukemia is frightening but allow hope to keep you going.
Barb never gave up. She died in bed in her little house with her beloved greyhounds in the next room. When she was found the following day, she was sitting up in her bed with her laptop.
She had been busy researching other treatment options that may be out there for her. Even while she died, she wasn’t giving in to the enemy inside of her.
If you need support, please reach out. Do not think you can face this enemy alone. Even General Patton called for reinforcements. There are tons of people out there, including myself, who are here to support you 100% of the way.
That’s why I value my Patient Next Door family so much because we stick together and reach out to each other with hope and caring.
Here is a resource I found that will help you with a child who has been diagnosed with Leukemia. Although their focus is on children, they will also help you find the correct people to contact as an adult with the disease as well.
Children’s Leukemia Research Association, Inc.
585 Stewart Avenue Suite 18
Garden City, NY 11530
Don’t forget to download and utilize our free Patient Next Door app onto your smartphone. With it, you can share the healthcare journey of you and your child with people who are facing similar conditions.
The app isn’t just free, it is ads free!
As always, we here at Patient Next Door love serving you and hope you will join us in aiding others in finding resources and hope.
I’m glad I was able to connect with you today. IF you ever need anything, please never hesitate to let me and our support team know.
Because we really and truly care about you.
Disclaimer: The opinions expressed in this post are the personal views of the author. They do not necessarily reflect the views of PatientNextDoor. Any omissions or errors are the author’s and PatientNextDoor does not assume any liability or responsibility for them.