With something as shocking and momentous as a child cancer diagnosis, friends often simply do not know what to say. They may be frightened of saying the wrong thing and causing more upset or they may find the whole situation just too upsetting. However, to say nothing at all will only make things worse for a family already devastated by the news. You cannot go wrong with the simple words, whether in person or via a text message: “I’m so sorry to hear this. I am here for you.” It will mean a lot.
Bring food to the hospital or home
Immediately following a cancer diagnosis, the child will have a prolonged period in hospital while they begin chemotherapy treatment, which may then be followed by treatment at home with intermittent care in hospital. Parents will often take turns staying with the child while caring for other siblings at home. It is a time of chaos and stress.
Our son Isaac was six weeks old when Yasmin was diagnosed at the age of two and we would not have managed without the support of both grandmothers who moved into our home for a short period of time. Early on, one friend cooked a batch of fresh-home cooked meals and dropped them at our home so that we would have something tasty and healthy to eat in among all the ready-meals, chocolate, crisps and hospital food. This was hugely appreciated and not something I would have felt able to ask somebody to do at the time.
Pay a visit
If you can visit do so. I have to admit that my husband and I have been disappointed by a couple of friends who disappeared in the two years since our daughter got sick. However, far more so, we have been overwhelmed by the support of many more friends, often people we barely knew when this began, who have been there every single step of the way, whether just as a shoulder to cry on or with much-needed practical help.
Dealing with a childhood cancer diagnosis can be isolating and lonely for parents, particularly if one or both have to give up work in order to care for their children. If you can visit do so. Check first to make sure it is a time when it is ok for the child on treatment to have visitors and bring your own kids around to entertain or come armed with sticker books and puzzles.
Some of our wonderful friends helped to make Yasmin’s 3rd birthday the most memorable day yet by dressing up as Wizard of Oz characters and creating Oz in our backyard while my husband’s photography colleagues organised an auction of some of their most celebrated photographs to raise money for charity in Yasmin’s name
Don’t ask, just do
People are generally useless at asking for help and the kind offer of “Do let me know if there is anything I can do?” is rarely taken up. So be proactive. Cook meals, take magazines, toys, games to the hospital, offer to babysit, or take the kids to the park, tidy your friend’s house while they are in the hospital.
Think what chores need doing and just do them. I have got a lot better at asking for help when on verge of a breakdown, but still often feel like I don’t want to put people out.
Be there months down the line
A childhood cancer diagnosis changes a family forever. We were deluged with texts, calls and messages of support in the weeks following diagnosis often at a time when I was completely unable to respond or take anything in. I was in shock. There were times when I was able to talk about Yasmin’s treatment and my fears for the future and others when I just needed a break from it all.
Although now, we appear to have got our lives back to normal and Yasmin has a great prognosis with the end of treatment in sight, a prolonged hospital admission means fraying nerves and a feeling that we cannot cope. The waves of fear and hopelessness return along with a need for emotional and practical support.
The treatment for acute lymphoblastic leukaemia is very long (two and a bit years for girls and three years for boys) The stress is not as intense as at the beginning but it has been there for a very long time and I need my friends and family just as much as I did in the beginning.”
Karen’s daughter Yasmin was diagnosed with acute lymphoblastic leukaemia in August 2012 and will finish treatment this October.
I have shared with you Ryan’s lymphoma journey we talked about the ups, the downs, the protocols for drugs, the side effects, but I realised recently I’ve never shared the questions. This post is all about what to ask when you receive a diagnosis of cancer.
Receiving a cancer diagnosis is never ever going to be seen as good news. It can never be dressed up or made pretty. It is devastating, it is gut-wrenching, it is life-changing. There is so much information to process you won’t even think of the questions necessarily or you will have hundreds of questions you want to ask all at once. These are just some of the questions you can ask once you have processed the news, in order to gain a better understanding of your fight ahead.
- What type of cancer do I have?
- Where is it located?
- What are the risk factors for this disease?
- Is this type of cancer caused by genetic factors? Are other members of my family at risk?
- What lifestyle changes—such as diet, exercise, and rest—should I make to be healthy before, during, and after treatment?
- Where can I find more information about this type of cancer?
- What are some common symptoms of this type of cancer?
- How can I prevent or manage them?
- What are the treatment options for my symptoms?
- Will certain activities make my symptoms worse?
- What should I do if I notice new symptoms or if existing symptoms worsen?
- What diagnostic tests or procedures will I need? How often?
- Where will I go to have the tests or procedures?
- How can I prepare for them?
- What will we learn from the tests or procedures?
- When will I get the results, and how will I receive them?
- What does my pathology report tell us about the cancer?
- Will I need to repeat any tests or procedures if I seek a second opinion?
- How and when should I communicate with loved ones about my diagnosis?
- What is the stage of the cancer? What does this mean?
- Has cancer spread to my lymph nodes or any other parts of my body?
- How is staging used to help decide the best type of cancer treatment?
- What is my chance of recovery?
- What are my treatment options?
- Which treatments, or combination of treatments, do you recommend? Why?
- What is the goal of the treatment? Is it to eliminate the cancer, help me feel better, or both?
- What clinical trials are available for me? Where are they located? How do I find out more about them?
- Who will be part of my cancer care team? What does each person do?
- How much experience do you or other members of the cancer care team have treating this type of cancer?
- Will I need to stay in the hospital for treatment? Or will this treatment happen in an outpatient clinic?
- What is the expected timeline for my treatment? Do I need it immediately?
- How will this treatment affect my daily life? Will I be able to work, exercise, and perform my usual activities?
- What are the short- and long-term side effects of this treatment?
- Could this treatment affect my ability to become pregnant or have children? If so, should I talk with a fertility specialist before cancer treatment begins?
- How will you treat side effects that I experience during treatment?
- How can I keep myself as healthy as possible during treatment?
- What are clinical trials?
- How do clinical trials help people with cancer?
- What happens during a clinical trial?
- What are the benefits and risks of participating in a clinical trial?
- How will I be cared for during the clinical trial?
- What are my responsibilities during the clinical trial?
- Are there any costs associated with my participation in a clinical trial?
- Where can I learn more about clinical trials?
- What support services are available to me? To my family?
- May I contact you or the nurse if I have other questions?
- Whom should I call with questions or concerns during non-business hours?
- Can you recommend a social worker to help locate support services?
- Where can I find resources for children? For teenagers? For young adults? For older adults?
- If I’m worried about managing the costs of cancer care, who can help me?
- Who handles health insurance concerns in your office?
- What is the chance that the cancer will come back? Should I watch for specific signs or symptoms?
- What long-term side effects or late effects are possible based on the cancer treatment I received?
- What follow-up tests will I need? How often will I need them?
- How do I get a treatment summary and survivorship care plan to keep in my personal records?
- Who will be leading my follow-up care?
- What survivorship support services are available to me? To my family?
These are a lot of question, I know. Many of them will be answered as part of your consultation with your consultant(s). I would suggest however you print these off and have them with you for several appointments as you will need to go over information as you have a chance to process all the new jargon and guidance you are being given. I have listed on a separate page at the top some specific questions I asked about Ryan’s particular type of Cancer. They are quite in depth so may well not be appropriate to your situation, but they are there for you to look at of so wish to do so and you can reword them to suit if the above questions do not answer all of your queries.
Was it my fault?
Why him and not me?
Why didn’t I know?
How long had he been sick for?
I had been telling people how lazy Andrew was because he often refused to walk. I had been hard on him telling him he couldn’t have a piece of cake in the café unless he walked around the nature trail without me having to carry him. I was frustrated that all he wanted to do was sit and watch TV listlessly. I was annoyed that he wasn’t settling into pre-school and was teary because this was finally time I
Good morning, Good Night & All Points in Between,
Sweet, sweet summer – how we have missed you! But whoever referred to “the lazy days of summer” must not have faced acres of unruly plants, juggled playdates amidst summer camps, or cleaned muddy pawprint after muddy pawprint from the kitchen floor after multiple visits to the creek. So, while essential oils can support all facets of this active time of year (from gardening to emotional support, from our furry family to green cleaning), this month’s blog is going to focus on one main topic: insect repellent.
The enjoyment of longer days often brings some undesirable visitors to our campfires and cookouts. As the pests invade, many head to find the long forgotten, often chemical based repellants in the hopes of deterring unwanted guests. Yet there are many safety concerns related to both human and environmental health with the use of synthetic chemicals to control insects (Bug Repellent: What’s In it?). Commercial bug repellants are comprised of active ingredients, which are required on the labeling, as well as inert ingredients (such as fragrance, preservatives, and solvents), which are not required to be listed. While some studies have been done regarding the efficacy of bug repellants, studies have NOT been carried out to fully understand exactly how each chemical repels insects and more importantly, how they may affect our bodies and the environment, let alone what the impact may be of the myriad ingredients in combination (Environmental Health Perspectives). Federal law protects companies’ rights to keep inert ingredients confidential because they are considered trade secrets. This can result in chemicals of concern finding their way into bug sprays and ultimately into our bodies.
Going back to April’s Blog, it is imperative to remember that what we put ON our bodies goes IN to our bodies. The United States regulates insect repellants as pesticides because the active ingredients in those repellants ARE pesticides. There is growing evidence that pesticide exposure is linked to a number of diseases including asthma, cancer, Parkinson’s, Alzheimer’s, and more (Beyond Pesticides, Disease Database).
My son’s name is Aaron and he was a gift from God in that he came to us through adoption. He’s the sweetest little boy and from the moment I held him, just seconds old, he has been the center of my world. Due to divorce, we are now a family of three – myself, my mom and Aaron.
My son was 5 when he was diagnosed with Acute Lymphoblastic Leukemia. He was just three weeks into a brand new experience – Kindergarten. It came out of nowhere. No obvious symptoms. We woke up on September 20th to get ready for church and he was covered head to toe with a strange rash. Our journey through the world of pediatric cancer came at us very abruptly and it hasn’t stopped yet. After 5 months of intensified chemotherapy treatments, blood transfusions, platelets, bone marrow biopsies and aspirates we were unable to obtain remission and headed to Duke University for a life-saving Bone Marrow/Stem Cell Transplant. We spent 7 months in Durham, NC while Aaron underwent and recovered from this procedure which required that I walk away from my job. As of March 18, 2018, Aaron is two years cancer free and two years post Bone Marrow Transplant. Thank you, Jesus! He is now 8 and loves soccer and his doggy Sebastian.
He is still undergoing treatment for a transplant side effect known as Graft vs. Host Disease. The donor cells are still not playing nice with his original cells but we are working toward that. In the meantime, it’s not the most comfortable thing for Aaron to endure as it causes GI and skin issues that are just constant and aggravating for Aaron. Please join us in prayers for this.
Aaron has not been in school full time since his diagnosis. He spent all but the first three weeks of Kindergarten on homebound. First grade was all-homebound and he’s been in school about 40 days of this year’s attempt at first grade. His homeschool teacher is the best and we pray that 2nd grade will be an easy adjustment for him in the fall. He has dreams of becoming a firefighting veterinarian and I’m trusting and hoping that God has the same plans and will make a way for him to catch up where he’s fallen behind.
Throughout this journey, God has just shown up in so many unbelievable ways. He has surrounded us so completely with exactly what we have needed. A bible verse at the right time to speak to the very thing that we were struggling with. A hug, a phone call at just the right time, amazing doctors, treatment options (many families we’ve gotten to know don’t have options), resources to buy prescriptions, to travel out of state for treatment and pay bills that couldn’t get paid while I was unemployed for 14 months. We were indeed blessed with a faith community that just picked us up and held us tight and refused to let go. Many in this community we’ve never met and yet God has still brought them to our side. We were so amazingly blessed. You all are a part of that community, as are organizations like Special Love. Aaron has also enjoyed a week of camp through Special Love. There he was able to just be himself. He was amongst fellow survivors who understand his issues and were not as harsh on him as other children have been because they just don’t understand what he’s been through.
We live on such a very tight budget due to the financial fall out that comes along with a pediatric cancer diagnosis. This tight budget makes camp and respite opportunities impossible to even think about. When you add my single parent status into that equation – the impossible just got that much more impossible. So with all my heart, I thank you for following God’s calling and being the light for our family as we continue to work through this journey of pediatric cancer. My family is thankful for all of you!