(say ahhhhh ...) every year hundreds of children are diagnosed with the most common childhood cancer. it’s called acute lymphoblastic leukemia or all. leukemia is a disease that begins in the bone marrow and though all is just one of many different kinds of leukemia, it is the most frequent and curable type in children. children with all will spend approximately three years of their lives being intensely monitored and treated with chemotherapy to fight this disease. we would like to introduce you to all,
and to the team involved in treatment, and to parents who have witnessed their children's courage in conquering this disease. my son, jeremie, was eleven when his symptoms began. at first they were subtle. he just wasn't like himself anymore. he started not being interested in hanging around with his friends. he was napping a lot; seemed tired all the time, but when he'd sleep he didn't seem refreshed when he woke up. he started complaining that he had pain in his limbs,
his appetite was down, he was losing weight. he was just not well, but we didn't know what was wrong with him. early medical tests showed nothing, but then he started limping, he was vomiting. and he became pale and feverish in the afternoons. by this time new tests revealed that my son had acute lymphoblastic leukemia. the word leukemia comes from two greek words that mean: ‘white blood’. leukemia is the general term for a blood cancer that begins when something goes wrong with the normal development of white blood cells.
in acute lymphoblastic leukemia or all, the most common type of childhood leukemia, the disease begins as immature white blood cells start to overwhelm the body’s normal blood factory. it starts inside the bone marrow, where white blood cells, red blood cells, and blood platelets are made. white blood cells are designed to move into the blood stream to fight infection; red blood cells circulate oxygen in the body; and blood platelets act as internal band-aids, creating blood clots when the body is injured. with acute lymphoblastic leukemia, the white blood cells stop developing at an immature stage and are over-produced. these leukemic blast cells crowd out normal white cells, making children prone to infections.
they also prevent the production of red blood cells, which makes children anemic and tired because there is less blood to carry oxygen around the body. and when blood platelets begin to diminish, children start to bleed and bruise more easily. because this disease originates in the bone marrow, it is not always detectable by blood tests early on. but parents will notice something is wrong ... symptoms can include: fever, frequent infections, mouth sores, weakness, fatigue, paleness; easy bruising, bleeding, or red pin-point rashes; swollen lymph nodes, bone or joint pain
headaches - and in boys - a painless swelling of the testicles acute lymphoblastic leukemia is the most common leukemia in children – and the most common cancer in children. approximately 300 new cases are diagnosed every year in canada. in the vast majority of cases, we do not yet understand why the disease develops, though it is an active area of research. this means that childhood leukemia is not caused by any one thing that happened or did not happen to a child. (there you are!) aside from blood tests to measure the number of white blood cells in the bloodstream,
we rely on two other diagnostic tools. these are called a bone marrow aspirate and a lumbar puncture. they are used to extract bone marrow and spinal fluid samples. we extract bone marrow with a special needle. the marrow sample will reveal which type of white blood cell is causing the problem. once we determine the diagnosis of acute lymphoblastic leukemia, or all, we look further at two types of lymphoblasts or abnormal white blood cells. they are called t cells and b cells. t cells normally act like tattle-tale cells in the body
– their job is to identify viruses and bacteria and send out a call for help. leukemia arising from these cells is called precursor t-all. b-cells are like bully cells that normally respond to the t-cells' call to help fight disease in the body. leukemia arising from these cells is called precursor b - all. precursor b - all is the most common type of childhood leukemia we treat. a child’s chemotherapy and drug treatment depends on which of these two white blood cells is malfunctioning and proliferating. we also look to see if these cells have migrated into spinal cord fluid, which also surrounds the brain. to extract spinal fluid we perform a lumbar puncture. again, we use a special needle for this procedure.
if the leukemia is in the spinal fluid, we may use radiation in our therapy program. we sedate children for procedures like bone marrow aspirates and lumbar punctures. (you’ll be awake before you know it.) parents always stay with their children until they fall asleep. and they are also in the recovery room to greet their children when they re-awaken. so once the diagnosis was confirmed, jeremie was admitted to the hospital right away for chemotherapy and steroid treatment. he got very sick from the chemotherapy, but at the same time between courses he actually started to seem like himself again. he started joking around with the nurses and with me and it was like i got my son back. (we haven’t been in for a year, now.)
after a couple of weeks our doctors discharged jeremie and prescribed medicines for him to take at home. but he regularly needed to be re-admitted to hospital for on-going tests and chemotherapy, especially during the first six months of his treatment. one thing i noticed about the treatment was the hunger caused by the steroids. there were times when he would just devour whatever it was he was craving. (how long did it take you to make these flowers? … one night. one night !?) for every child with acute lymphoblastic leukemia, the first thing we do is to support their kidneys with iv fluids. this is because the diseased white blood cells release a lot of salts into the bloodstream, and a child’s kidneys can become overwhelmed trying to clear out all of the potassium, phosphate, and uric acid from the body. and before we design treatment for the child, we weigh many factors -
their age, the number of all cells circulating in the blood, whether those cells are t or b cells, and whether they have spread to the fluid which covers the brain and spinal cord. for the first couple of weeks of treatment the child will stay in hospital, but once the bone marrow shows some response and the child is doing well, we will continue treatment on an outpatient basis. we work with a five-phase plan to defeat the disease. first there is induction therapy. ... treatment phase:1 ... duration: 1 month it is generally a month long fight to kill as many all cells as possible. during this month we will work to get blood counts back to normal and to see a complete remission of the leukemia.
next comes consolidation. ... treatment phase: 2 ... duration: 1-2 months this is where we use a new mix of medicines to reinforce the remission. it generally lasts one or two months. the third phase is called interim maintenance – where we try to maintain the remission. treatment phase: 3 ... duration: 2 months this is another two month phase. and the fourth phase is called delayed intensification ... treatment phase: 4 ... duration: 2 months
– during these two months we intensify treatment again to eliminate any leukemic cell hiding in the body, and to prevent the leukemia from coming back. (a cat with a full tummy.) more intensive treatment may be required for patients who have a slow early response in their bone marrow. (man singing) and finally, there is the maintenance phase. treatment phase: 5 ... duration: 2.5 – 3 years it is during this time that we will use medications aimed at maintaining remission for a long time. ( ... the big horse pills? … i did have to take those ... they taste like bacon grease to me ...)
the child will receive chemotherapy drugs mainly by injection (i feel like i’m going to puke.) some by injection into the muscle. but because we will need many blood tests, and because some chemotherapy must be directly injected into veins, we will use something called a porthacath. this is an implanted iv that almost every child with all has until the treatment is over. drug therapy will also include steroids. and some of the drugs will be in pill or liquid form. all of these drugs will obviously have side effects which can include:
irritability, increased appetite, nausea, vomiting, mouth sores, fever, jaw pain, and constipation. your child’s primary doctor will go over each of the drugs that will be used in your child’s therapy and how you can deal with their side effects. during their treatment some kids may need iv antibiotics for fever, and some may need red blood cells or platelet transfusions. (hi madison… i’m dr. kemp from anesthesia – i’m the sleep doctor.) your child’s hospital team will include a primary doctor who is a staff specialist in oncology and leukemia, and fellows who are pediatricians training in oncology
(are you eating today? yeah! you are? what are you eating?) there are also residents who are doctors training in general pediatrics. your team of registered nurses will include a nurse practitioner who is specializing in managing complex conditions. (how did your chemo go today? ... good.) as parents you are also part of the medical team. you will learn that chemotherapy is not cell specific. it can kill any rapidly dividing cells, good or bad, and not just inside the marrow. for example, membrane protecting your child's digestive tract will also be targeted (is it good?)
so special oral hygiene will be necessary. (i have like a mouth sore right here.) (follow your dad) … and toddlers will need more diaper changes and creams to reduce skin infections. because the chance of picking up infections is high, though parents should not isolate their children, they should avoid crowded places. exposure to viruses such as chicken pox for example is serious, therefore parents need to screen visitors and no live flowers should be allowed as gifts. handwashing will prevent transmission of viruses and infection from one area into your child. (so you want to be pulling that … )
pharmacists will be coming in to talk to you about medications the child will be using at home and during the hospital stays, the schedule of those medications and what to watch for as a side effect. (if you don’t wait for the dinner dose … ) dieticians, social workers, child life specialists, teachers, psychologists, and chaplains will also all be at your disposal. i remember being told that jeremie had cancer and feeling my knees buckling under me. he was admitted right away to the oncology ward … and i cried all night. i wouldn’t have believed it possible, but as my son’s treatment became routine, we began to hope again, and we could actually laugh at times.
the steroids caused mood swings in jeremie – one minute he’d be fine, and the next he could be really angry or upset about something. the physical changes were upsetting too; his face became swollen because of the steroids, and he lost his hair. when chemo made him sick or a procedure was particularly painful, it was really difficult. my younger son felt a different kind of pain. he sometimes felt abandoned and resentful of our frequent stays in the hospital. he was forced to stay with relatives a lot. the strain on the family is enormous. parents experience the shock of diagnosis, and fear for the life of their child.
it is extremely difficult to cope with these initial feelings of sadness and despair and continue to be your child’s primary source of support. in the beginning, parents can find it difficult to concentrate on, or accomplish, even the simplest of things. that’s why soliciting support from your hospital staff, your family, and your community, is vital. siblings are the indirect victims of childhood cancer. they watch the physical deterioration of their brother’s or sister’s health and to a mysterious illness that they are often told very little about. they experience the sadness, frustration, and fear of their parents. this can translate into behavioural and emotional problems at home and at school
and may require professional help. (it’s just good to get back into summer.) our multi-disciplinary team of specialists can refer a family or a child for personal or group counselling or psychotherapy … (i don’t know, do you see any clowns?) our theraeupeutic clowns are trained to provide a sense of whimsy for our patients and for visiting young siblings. they often elicit joy and even disclosure of what a child’s fears are about the hospital experience. our child life specialists assist in making entertainment and hobbies available for our kids. and our social workers help parents navigate the financial and other challenges they face during the child's illness. elementary and secondary school teachers work with us as well.
they provide continuing education for your child, right here in the hospital. (now all we need to do is write the story. okay.) our educators will also help to secure outpatient educational resources. (the spelling word is desert. very good.) our team is here to assist you and to facilitate the recovery of your child’s health - physically, educationally, and psychologically. (so, are you ready to meet? yup.) psychologists, and the entire hospital team, need parents to partner with them in order to build a family focused approach to restoring wellbeing that will be helpful to everyone during this stressful time.
(today was my third year off treatment and that means that there’s very little chance of me having a relapse.) i wasn’t prepared for how much time we would spend in hospital. and i’ll never forget when my son had an allergic reaction to one of the drugs. it temporarily paralyzed his legs. my son is amazing. he was eleven at the time. i remember telling him, "noah, you are so brave that you make me feel strong." and he said to me, "mom, you are so strong that you make me feel brave." (what are you doing for the summer, do you know yet? … camp.) i remember having to wake him up in the middle of the night to take medicines that he hated. and i remember how my neighbours helped us manage our lives during a time when we couldn’t.
(three years off treatment is actually like a milestone.) they took turns preparing our meals, and cleaning our house, doing our laundry, walking our dog, and they shoveled our walk during some of the heaviest snow that winter. noah was one of two children in our community who were diagnosed with leukemia at the same time. since then our neighbourhood school runs a blood door clinic twice a year in their honour. (i’m npo which means i can’t eat until i’m done my procedure.) the drugs we use throughout your child’s treatment will depend on how quickly the leukemia responds to the initial course of chemotherapy called the induction phase. (because my counts … your counts are great.) after induction we’ll take more bone marrow samples and start to target medicines into the spinal cord fluid even if no rogue cells are detected there.
(are you awake already ? uh huh ...) this is because we know that these cells can hide there … and we don’t want to give them a chance to survive. our maintenance therapy begins once we’ve achieved remission, and it will continue for about 3 years. we want to make sure that these medicines have time to kill the very root cells of the disease, the cells we call stem cells. but chemotherapy will also affect your child’s good white blood cells. and we’re particularly concerned with the ones called neutrophils. they literally work to 'neutralize' infection in the body. not having enough neutrophils is a condition called neutropenia. and fever in a child with neutropenia is considered a medical emergency.
children with a fever need to have their white blood counts measured. they'll need antibiotics and an investigation to determine if the fever is from a cold or something more serious like a blood stream infection. that's why, during the entire course of your child's treatment, never use any over the counter products that can mask a fever. that means tylenol, advil, motrin, or anything else. instead, rely on a thermometre. some parents will measure temperatures regularly, but it's okay to just check when your child is feeling unwell or feels warm. your doctor or nurse will explain to you the fever range to watch for and when you should call your clinic or an after-hours doctor. this scenario will likely happen to your child at least once during their treatment.
and the hospital stay will be a minimum 48 hours. (umm, do you know who cujo is? yeah!) i was diagnosed in 2001. i was 12 years old at the time. now i’m sitting here at the age of 19 cancer free. before i was diagnosed my symptoms were flu-like. my throat was sore, i had a headache that wouldn't go away, and i had pain in my lower back that made it tough for me to lie down. but my parents and i didn't think anything of it because i had just finished a 4 month cross country training regime and we all thought i had over-exerted myself or injured my legs or something. then one day i collapsed, and after that my acute lymphobalstic leukemia was diagnosed.
my parents told me that i was a high risk patient because my diagnosis also revealed multiple tumours in my groin and chest. as i progressed through the therapy, i was warned that i may no longer be able to play hockey and be active in sports. but i went through the therapy, and the medicines worked, and within two months of my recovery, i was playing hockey. and for me, playing hockey was my drive to survive. by the time i was 15 treatment had become more of a backdrop in my life. i became involved with international events that benefitted sick kids hospital, and i got involved in summer camps supporting kids who were even younger than me, but fighting the same battle. today, my only reminder that i fought against acute lymphoblastic leukemia is my annual doctor's check up - which always goes well. and my goal now is to finish university and become a corporate lawyer.
my name is michael. believe in your ability to get through this because you can, speak up if you have concerns about your child's treatment, never let go of hope, accept help from those around you, and don't be afraid to laugh and cry, and tell your kids that you love them every day. losing hair, pain, losing and gaining weight, and fatigue are major stressors – not just for the child but for the family witnessing the child’s experience. developing trust, respect, and empathy is part of the therapeutic relationship we work to develop so families can overcome a most difficult time. let people that want to help you - help you, because you are going to be so involved taking care of your child.
let your spouse. let your parents. let your siblings. let your friends. let everybody help you. when somebody says what can i do to help, let them do something. childhood leukemia is a very treatable disease. the time around diagnosis is difficult, but children are amazing during their ups and downs throughout therapy. they still find joy in the moment. and they have so much to teach us in their approach to life.
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