Henry is a wise soul. He is sweet and sensitive. His sense of humour is amazing. He giggles.. oh does he giggle.. when he finds something funny – like Bugs Bunny cartoons or a funny joke. He loves sports and is a huge fan of all of Toronto’s major league teams. He is musical, and plays the piano and ukelele. He is a kind older brother and he is loved loved loved by his family.
Henry was diagnosed with Acute Lymphoblastic Leukemia (ALL) on April 27, 2016. Before his diagnosis he had a lump on his hip, leg pain, elbow joint swelling and ankle joint swelling. ALL has a long treatment plan that includes killing the current cancer cells, riding the body of any future cancer cells and finally to kill any cancer cells that might still remain after those first two phases. Chemotherapy is usually the standard approach to kill ALL cancer cells and Henry has had lots of it! Even in his sickest, weakest moments, Henry has been good spirited and brave. We’ve been so proud of his strength.
Cancer has changed so much for our family. Our family has faced many struggles: worry, stress, depression, (temporary) loss of income. But it has also slowed us down. It has made us grateful. We don’t sweat the small stuff anymore. We appreciate our family, friends, and community so much more. It has taught us to appreciate the important things in life.
Marissela is an old soul. She looks into you not at you. Her favorite thing in the entire world is music. That means singing, dancing, playing instruments, all of it. When she is sick to her stomach or in pain, music is one of the only things that brings comfort to her mind and heart. She also loves the Disney Princess Elena of Avalor. She is very reserved but also highly intelligent and emotionally aware. She loves to play things like peek-a-boo and will sign several kid’s songs. The sweetest little girl you’ll ever meet!
Marissela was diagnosed on August 31st of 2015 with Very High Risk Premature B Cell Acute Lymphoblastic Leukemia or ALL. She is still in active treatment, receiving daily chemotherapy. Her end of treatment date is 12/23/2017 pending she doesn’t relapse. She is currently in remission but at very high risk of relapse.
Cancer has been a consuming beast. We struggle greatly with Marissela’s discomfort. Chemotherapy causes severe pains, aches, vomiting, diarrhea, bleeding, and so much more. Trauma of treatment has also caused her to have developmental delays. In addition to chemo, we take her to appointments every week for physical therapy, occupational therapy, speech and language pathology, child psychology, and music therapy. We practically live at the hospital which means being away from our other two children for extended periods of time.
Treatment itself is financially draining as it costs approximately $300,000 monthly (which is reduced by 80% after insurance). Then, on top of that, we have to purchase medications and home care supplies totally approximately $1,500 monthly. It’s very difficult commuting back and forth between home and the hospital while juggling normal daily activities. When we are home we are full time caregivers. We administer all of her home chemo, antibiotics and medications to control side effects. Depending on which phase of treatment we are in that can sometimes mean 5 medications a day or it can mean 30.
There is absolutely nothing cancer hasn’t changed about our lives. Our world ended but life kept happening. It’s the strangest thing- the closer you or someone you loves is to death, the more alive you become. We pack every second of every day with joy and love. We eat ice cream for breakfast sometimes. If my kids want 5000 hugs & kisses, snuggles, a glasses of water and bedtime stories… the answer is always yes.
We pray to God, who gives and takes away, that his plan is to let Marissela live. That he allows her to grow in his image to serve and bless others. We also have to accept that sometimes the answer is no. That, my friends, is something we are still trying to wrap our heads around. Cancer has brought us to our knees in the most raw, humble way you can possibly imagine. We will never, ever be the same again. Marissela is so brave. She fights with the grace and fortitude of an angel. I couldn’t do what she does. When she beats cancer, there is no limit to what she will be able to accomplish. God is good!
Yasna is a very active child and a wonderful part of our family. She is super sweet and brilliant!
At just two years old, she seemed to be tired a lot and we noticed some bruising that appeared on her neck. We thought this was suspicious. After some blood work, we discovered Yasna would be a Acute Lymphoblastic Leukemia patient. The battle began!
It isn’t easy when we have to watch our daughter that up to until now, famous for long and curly hairs, laying down on the chemotherapy bed and crying for severe tummy pain. The look of pain in her eyes was unbearable!
Her battle has been long and she has taught us how to stand in the storm. She is still under treatment and we have a long way to go, but we are ready to spend all our life with her. She is our hero!
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.
Jules is generally happy go lucky kid. He has a pretty positive outlook on life. He tends to walk to the beat of his own drum; as a result he seems to have a hard time making friends. Jules loves silly jokes and they make him laugh. He loves snow, skating, hockey and sushi. He is into legos and superheroes lately. He loves school and trying out new experiences. He loved Hawaii and loves to travel.
In May of 2015, Jules was experiencing unexplained fever, bruising, anemia, acting lethargic, bone pain, and infection. All of those symptoms are very common for Leukemia. He was diagnosed with Acute Lymphoblastic Leukemia or ALL. Cancer has made him have periods of anger. He doesn’t understand why he got cancer. Unfortunately, doctors don’t know why children get cancer either. It’s frustrating!
ALL has a very long treatment plan and Jules has been through a lot to rid his body of cancer. He has had daily chemotherapy, steroid rages, lumbar punctures, general anesthesia, CT scans, x-rays, bone marrow biopsy, pokes, blood draws, IVs, and many inpatient hospital stays. We have to limit his exposure to anyone who may be sick which makes family outings tricky.
Josiah’s laugh is the most contagious thing on earth! He is seriously addicted to all things baseball and football. He loves to watch and observe others having fun (seriously) and gets so much joy out of it.
At five years old, Josiah had strep throat that wouldn’t heal. His tonsils were enlarged so we scheduled a tonsillectomy. Ten days prior to surgery we did a workup including a complete blood count as he wasn’t acting himself (he has Down Syndrome and is mostly non verbal), and it came back showing leukemia. On 7/29/14 he was diagnosed with Acute Lymphoblastic Leukemia or ALL.
Josiah has been through so much with his treatment. He has received a lot of chemo, spinal taps, and MRIs. Josiah had an IV with chemotherapy leak into his hand that caused a bad burn. We’ve needed to add Neurology, Orthopedics, Plastics, and Sleep clinic to our list of specialists since starting chemotherapy. Josiah is more sensitive to toxicity because of his T21 and ended up inpatient over 8 months of his course of treatment.
Due to a stroke prior to birth and low muscle tone from his down syndrome, Josiah had been fighting to walk prior to diagnosis. He had gotten up to 3 city blocks with his reverse walker the week prior to his diagnosis, but treatment and so much time in a hospital bed robbed him of most of his progress. He has fought to build up his muscles again, and we’ve treated the pain and neuropathy. Currently he can walk with one handed assistance and we are close to him standing unassisted but not quite there yet. Even though he finished his treatment last year, healing from his treatments can be tough!
We have two younger children (2 and 5 weeks at dx, 4 & 2 now)…it’s been challenging on them and us to be apart so much. The focus being on the child with cancer so often is hard to understand for little ones. The stress has been a lot! We are a single income family so my husband MUST work and I take the role as primary caregiver for 95% of care. It’s caused a toll on our life and my health, unfortunately, but God remains faithful and carries us. We are so thankful for His protection over Josiah! His cancer has also pulled us closer as a family. It’s allowed us to treasure the little moments and get creative for fun. It’s made us more thankful as a family.
Josiah amazes us. He has been a fighter since day 1, (down Syndrome, Stroke, heart defect, missing corpus callosum, lung cysts that almost killed him, Leukemia, blood clotting disorder)…but NOTHING dampens his spirit. Yes, he has hard days but he always can muster a smile or giggle or snuggle. He is so tough when it comes to treatment and does what he needs to do.
