Olivia is a triplet so at around age 2 1/2 I started to see a decline in her activity level while playing with her sisters. She was also falling ill frequently and developing frequent, rare infections that no one else in my family was getting or had. We had spent an entire summer trying to figure out why the sudden change in health and getting to the bottom of what was wrong with her. On August 4th of 2011, we finally heard the words no parent ever wants to hear… “Your child has cancer.” Olivia was diagnosed with Acute Myeloid Leukemia or AML that day.
Olivia started treatment fairly quickly after diagnosis and spent many, many months inpatient at her hospital. She endured 7 months of chemo and developed some infections. She hit some unexpected bumps in the road and went through some really horrible things at such a young age, but did it all with a smile on her face. She was young and didn’t really understand what was going on with her but she knew she was sick. She was so sad to be away from her sisters. From very early on in her diagnosis we explained everything to her and just kept telling her she has to be strong. So her motto through it all was to ” be brave & stay strong” And that she did!
I feel this experience has truly changed us all as a family. It has absolutely made Olivia grow and mature by leaps and bounds. It taught us that life is precious and that we as a family always need to be strong. We are also there for one another, no matter what, and to appreciate even the smallest of things.
As of this past winter we celebrated Olivia’s 5 year remission. A day that we have hoped and prayed for for a long time. She is now an amazing, happy, funny, gymnastics loving, 9 year old girl who loves puppies, owls, to sing, make musicallys and hang with her family and friends. We are so proud of the young girl she is growing up to be!
After a few sore throats and fevers, Haley was diagnosed with Mixed Phenotype Acute Leukemia or MPAL on November 14, 2014. MPAL is a combination of both cute lymphoblastic leukemia (ALL) and acute myeloid leukemia (AML). This type of Leukemia is rare and usually affects adults but can present in anyone. It can be a bit harder to treat since there are two different types of Leukemia cells present. This is Haley’s second time having Leukemia. She relapsed on June 9, 2017 and she needed a bone marrow transplant.
Haley’s six year old brother, Jaylen, was her match. As you can imagine transplant day was a very long day that was full of emotions. Haley’s parents were full of nerves having both of their children undergoing procedures on the same day but the word of the day was most definitely COURAGE.
It started with Jaylen. For being only six years old I have never seen such bravery. He was determined to not show an ounce of fear. He was incredibly courageous leading up to his donor procedure and his parents showed immense composure until he was lead back to surgery. I gently excused myself and let them have their “moment” together. I simply could not let myself invade their privacy. It was simply too raw.
Haley has a spunk and sass that is completely endearing. This is not her first rodeo and she knows what is coming. She is brave, courageous, strong and smart as a whip. You aren’t going to pull one past this one.
The mood of the day was one of celebration that Haley was receiving what could be her life saving transplant. But underlying of course was that element of knowing that Mom & Dad have two children that were going to be suffering because of it. Jaylen came out of his donor procedure hurting. It took him much longer than expected and in pain. Of course there was also the knowing that this was the beginning of a very long a hard road for Haley.
Oh yes… and interesting fact. This all happened on the day of the eclipse. I truly believe what happened that day was far more important and life changing than and eclipse of the sun!
Luke is the happiest and most fun little boy ever! He has the cutest personality and is such a sweet and loving child. Just about anything makes him laugh and he LOVED flirting with all of the nurses when we were in the hospital. He absolutely LOVES mickey mouse!
At Luke’s one year hold appointment in June of 2016, the doctor discovered that he was slightly anemic. At that time no other symptoms of leukemia were present. Just a few short weeks later, he started having bruising all of his body and petechiae on his face and stomach. On July 12, 2016, he was diagnosed with Acute Myeloid Leukemia or AML. AML forms in the blood cells or bone marrow and can progress rapidly.
Luke has been through 3 rounds of intense chemo, each lasting several days with 3 or more chemo drugs per round. Luke also underwent a bone marrow transplant from an unrelated donor on October 26th, 2016. After his bone marrow transplant, he was in the hospital until December 1st. He was not able to have any visitors except for me (his mother) and his father. His two older sisters were not able to visit him which was very hard.
Once discharged on December 1st and even still today, Luke remains in social isolation. He continues to have to wear a mask if we do get to go anywhere. Up until the past month, we were not able to even take him into a store to do grocery shopping. Today, we can take him to eat at a restaurant but only at off eating times (ex. 4 pm) or to a grocery store during non busy hours. He is not allowed to be around a large group of people, especially children for quite some time still and will not be able to go back to daycare until at least 1 year post transplant.
Childhood cancer has definitely changed our life! We have learned how to live a new “normal” life. When Luke was in the hospital from the date of diagnosis until late September 2016, and then again from October 19th to December 1st,, our family has had to juggle hospital life as well as caring for Luke’s two older sisters who are currently 5 1/2 and 4. With Luke being on social isolation, our family rarely gets to go places together and do things as a family or experience what other younger children get to. Since Luke’s transplant, he has done exceptionally well and continues to fight!
Jillie is the oldest of 5 kids and has never met a stranger because she makes friends wherever she goes. She was active in 4H as secretary and raising rabbits. Jillie was in all pre AP classes as a sophmore. She was planning to graduate with both her high school diploma and her associates degree. This girl is not intimidated by anything, including Acute Myeloid Leukemia or AML.
AML affects the myeloid cells of the blood and accounts for 20% of leukemia patients.
Jillie was diagnosed with AML on November 14, 2016 after being excessively tired and experiencing nausea. She then spent 145 days inpatient without being released. She transfered to the hospital school and maintained her advanced placement studies. This girl took the pediatric floor on and made amazing friends!
Being surrounded by so many amazing people led Jillie to choose her career path; pediatric oncology nurse! Her graduation options have changed but her goals have not. Currently Jillie is in remission, going to church, watching baseball games, playing with her 4 younger siblings and enjoying life! Cancer has changed Jillie’s life and the lives of her 4 little siblings and myself. It tried to break us, but just taught us how to bend.
Lily is super happy. She loves life and dancing. Her smile is contagious!
Last fall, we thought she had a case of the flu. She went to see her doctor that day for an ear infection, but the doctor thought her coloring was off and sent her for blood work. She was diagnosed with Acute Myeloid Leukemia or AML. AML is a fast growing cancer of the bone marrow. We were given a 75% surivival rate. She needs to get a bone marrow transplant but has to wait because her heart function has went down a great deal.
Lily has been through so much at her young age. Her treatments have included bone marrow biopsies, spinal taps, chemotherapy, blood transfusions, and endless other tests. We can’t go many places when her blood counts are low.
A cancer diagnosis in our child has greatly affected our family life. We can’t be together that much and the kids miss each other. It is a difficult situation!
Childhood Leukemia. One of many words you don’t want to hear out of a doctor’s mouth, especially following, “Your child has.” About 5,400 families every year are swept up in the turmoil that is leukemia. While a diagnosis of leukemia is terrifying and tumultuous at best, the term “leukemia” is no longer the death sentence it once was. Just 60 years ago the survival rate for leukemia, the most common form of cancer in children, went from having a 3% survival rate to over a 92% survival rate.
It may surprise you to know that there isn’t just one pediatric leukemia. There are actually four types, with two of them being the most common: acute lymphocytic leukemia (ALL), which makes up about ¾ of the childhood cases of leukemia and acute myeloid leukemia (AML), which comprises nearly all of the other cases of childhood leukemia.
Children diagnosed with either of these today have a long, rough road ahead of them but a positive prognosis with an 80% five-year survival rate for ALL and 60%-70% five-year survival rate for AML.
Henry, diagnosed with ALL.
WHAT IS CHILDHOOD LEUKEMIA?
Leukemia is a cancer of the blood and bone marrow. Both ALL and AML begin when the bone marrow creates and accumulates too many immature blood cells. These extra cells turn into cancerous cells, replace the healthy cells, and are carried throughout the body in the bloodstream, causing the myriad symptoms leukemia often presents with.
Specifically in ALL, the cells that become cancerous are the cells that prevent germs from invading the bloodstream and tell the body’s immune system to kick in. These are called lymphocytes. In AML, the cells that become cancerous are the cells that destroy bacteria and digest diseased cells, called myeloid cells.
There are two other forms of leukemia: chronic lymphoblastic leukemia (CLL) and chronic myelogenous leukemia (CML). Just a glance at the names allows one to see the resemblance to their sister cancers, but unlike their acute counterparts, the term “chronic” means slowly progressing. While ALL and AML begin with immature cells, CLL and CML begin when the marrow produces too many mature cells. Fortunately, these chronic subtypes are very rare in childhood.
COMMON SYMPTOMS
Generally speaking, the symptoms of leukemia could be normal symptoms of many things far less scary than cancer. Just because a child presents with one or two of these does not mean they have cancer. A few of the following symptoms are the same symptoms as the common flu. That being said, these symptoms must be brought up to your pediatrician, especially if the flu-like symptoms have remained longer than a normal bout of the flu.
Leading up to Shephard’s ALL diagnosis, he had a swollen knee and fever that couldn’t be controlled with medication. He was also very lethargic.
ALL and AML share most symptoms. With ALL, the following symptoms are causes for concern:
Fever
Easy bruising and/or bleeding
Rash-looking pin point red dots called petechiae beneath the skin
Bone and/or joint pain
Lumps in neck, underarm, stomach or groin areas or lymph node locations
Discomfort, pain or feeling full beneath rib cage
Pale skin
Weakness
Lethargy
Loss of appetite
AML presents with some of the same symptoms:
Fever
Lethargy
Loss of appetite
And some different ones:
Night sweats
Weight loss
Ariana was constantly sick with several urgent care visits for over a month before her diagnosis. Her illnesses ranged from sinus issues, upper respiratory problems, ear infections and pneumonia.
All in all, when in doubt, a doctor visit is in order. These cancers are curable, but like their names imply, fast-moving.
Road to a Cure
With any illness, there is a trial and error period of medicines, tests and therapies before doctors finally get it right and have some amount of success; oftentimes, this trial and error period is continual, always searching for something better. Leukemia treatment is no exception. Trial and error was definitely the catalyst in finding the cure and continues today with research.
As recently as the early 1960s, leukemia patients always succumbed to their illness. ALWAYS. This is because of the fast growing rate of disease and infections related to the disease. Fast-forward less than half a century and we have an uplifting leukemia history lesson in 10 words or less: what was once a death sentence is now curable!
In the late 1940s doctors and specialists treated leukemia with a folic acid inhibitor, allowing patients a temporary remission. With this promise of some remission, the drug paved the path of chemotherapy for treatment of leukemia. Unfortunately, all patients eventually succumbed to the recurrence of their cancers.
By the 1950s, advances were being made with the combination therapy of corticosteroids and a drug called 6-MP, which was designed to kill rapidly growing cells like acute leukemic cells. This gave patients an improvement in quality of life while battling the disease and lengthened their life span, a promising outlook now on the horizon. Sadly, patients treated with this protocol still ended up dying from their disease as the leukemia developed a resistance to the drugs used to fight it and returned in other areas of the body.
In the 1960s, clinical trials focused on treating the recurrent cancers that fought off the treatments. Eventually, about half of the patients were cured of their cancers! By 1971, what was once deemed an impossibility became an amazing reality – doctors announced that leukemia could be cured. In 30 years of medical trials and scientific approaches, human beings cured cancer. A humbling experience that I can only imagine.
Since then, advancements have propelled the cure rate to 60% – sometimes greater than 90%. Some amazing advancements include cleaner and safer blood transfusions; refined chemotherapy protocols; bone marrow transplants from unrelated donors; and a special type of radiation called total body irradiation, a procedure to radiate the cancer cells in marrow pre-transplant, allowing the transplant better odds with a cleaner, less disease-ridden base of marrow.
The treatment of leukemia began in a time when blood was stored in glass milk bottles with paper cup caps and delivered to patients through a mesh-stuffed funnel. How far we’ve come in 70 years! These advancements are nothing short of medical miracles.
Treatment
Today, the standard treatment plan is similar for both types of acute leukemias. Most doctors place on their patients with ALL a three-stage process of treatment. For patients with the myeloid type (AML), normally only the first two stages are necessary.
Lucas’ treatment lasted 3 years and 3 months. He has been off treatment for 2 years and doing great!
Stage One: Remission Induction
The purpose of this stage is to kill the majority of the cancerous cells found in blood and/or bone marrow. This stage uses intense chemo protocols and most of the time requires long hospital stays. Because of the depletion of healthy cells also, this stage will usually require blood transfusions to infuse healthy blood cells back into the body. The majority of patients enter remission in this stage!
Stage Two: Consolidation
Another intense round of chemo kills any remaining cancer cells.
Stage Three: Maintenance/Continued Therapy
Kills the final remaining cancer cells and prevents relapse.
Bone marrow and stem cell transplants are offered if the leukemia doesn’t respond to standard treatment or comes back after remission. During a bone marrow transplant, bone marrow cells can be taken from the patient prior to treatment or from a donor in the hopes of creating a new “blood factory”, producing healthy white blood cells. Stem cell transplants are similar, introducing healthy blood stem cells to the patient for the same purpose. These stem cells can also come from the patient prior to treatment or from newborn cord blood donations.
Radiation therapy is offered if the cancer has spread to the brain or to the central nervous system or is likely to spread there. Strong radiation beams are aimed precisely at the target locations, killing the diseased cells.
TAKE ACTION
Any help offer to a family going through a child’s cancer diagnosis will always be appreciated, but there are two big ways to help give the biggest impact: blood donation and bone marrow donation.
Leukemia patients routinely need donated blood when they have low counts or they have a reduction of healthy blood cells. The American Red Cross blood drives are popular and easy ways to give blood. Giving blood is a very safe, relatively quick, and pretty painless procedure. Visiting the Red Cross website will give you all the facts you need before donating.
Bone marrow donation is a little more involved, but the good is does is by far more important! Joining the registry is easy! All it takes is a simple cheek swab. If donating bone marrow sounds like something you’d love to do for kids battling leukemia, visit the bone marrow registry at https://www.bethematch.org to learn more about saving lives with your generous donation.
If donating isn’t possible or you want to help even more, just giving your time to the family can make a huge difference for them. Offer a break during a lengthy hospital stay by sitting with their child while they get a much-needed reprieve from all things illness, send them a meal, make a care basket, or simply call. Find more ways to help here.
Hope
Let me leave you with a uplifting story of a child fighting the fight of her life against leukemia and winning, thanks to a selfless gift from a stranger:
“Olivia was 19 months old when she was diagnosed with very high risk T-Cell ALL. Her disease did not respond to standard treatment and it was determined that she would require a bone marrow transplant in order to have any hope for survival. Thanks to an anonymous donor, she received her second chance at life, just a few days after her second birthday. She has now been in remission for over three years and has been living a very normal and happy life. We were lucky enough to be able to meet her wonderful donor this past December and thank him personally. Although Olivia will be followed by a rather large team of medical specialists for the rest of her life, we are beyond grateful that she is still here with us today. We are also very thankful for organizations like The Gold Hope Project, that help us to document her life. These are truly priceless gifts for our family.”
Olivia, ALL survivor.
Thanks to medical advances, big-hearted blood and marrow donors and generous donations to children’s cancer research, leukemia is still a dirty word, but now one capable of being washed away.
