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15 Things Parents of Kids with Childhood Cancer want you to know
In honour of childhood cancer awareness month, we reached out to Luise Indimuli, to shed light on cancer awareness, early cancer signs in children and things that him and other parents wish they knew during those tough periods.
They share what they’d like you to know as well as guide you on how to be there for a cancer patient, the caregiver, how to look out for early cancer signs in children and how to practice self-care as a cancer caregiver.
“We are always in need of assistance, but afraid to ask. Whether its financial, because of huge bills or groceries, or just someone to come and relieve the caregiver to take a short break. It helps when our friends and family chip in voluntarily, the emotional toll of cancer makes it harder to ask for help, but we always need it”
Luise, Baba Zuri.
“How is the patient doing? What can I bring for him/her? are questions frequently asked. Rarely does someone ask the parent/caregiver how they are, or if they need anything. As a parents, I have needs too”
Gloria, Mama Shujaa.
“Initiation of treatment is usually a very crucial and scary moment for the caregiver. Psychological preparation on the duration and phases of treatment is important. Counseling before and during treatment is critical.”
Gladys, Mama Ron.
“Children undergoing chemotherapy have very compromised immunity. When we isolate them during chemotherapy, a lot of patience and understanding is required from the extended family who may wonder why they are not allowed to visit as frequently as before”
Luise, Baba Zuri.
Friends and relatives are sometimes called upon to donate blood or platelets for the babies. We appreciate a lot, even when we don’t call you daily to say thank you. We don’t forget, we are just overwhelmed”
Gloria, Mama Shujaa.
“As parents or caregivers, we may look strong on the outside but deep down we need that tap on the back, encouragement and positivity.”
Typhie, Mama Aurtbert.
“For Radiotherapy, it’s important to be guided in advance what to expect because some side effects are extreme and we are never sure how to handle them.”
Baba Caleb.
“It’s insensitive for people to keep telling parents how they could have prevented cancer, or ways to cure it, at this point in time all these opinions are not helpful. Don’t offer medical advice or miracle cures, leave that to the doctors. This is not the time to discuss how chemotherapy doesn’t work or that its a multi-billion dollar good for nothing money minting industry”
Magdalene, Mama Jean.
“It is very exhausting to the caregiver when ‘experts’ come advising us on what foods causes or prevents cancer. Sometimes we are left wondering which is the right nutrition, especially since some of these solutions are also businesses in their own right, especially targeted towards distraught parents”
Mama Lesley.
“Teach your children about the children going through cancer, they miss out a lot in school and life in general. Children going through cancer go through physical changes, whether its loss of hair, losing/gaining weight because of steroids, or being unable to participate in daily activities. Please teach your children compassion, love, inclusion and consideration to help the child with cancer to not feel dejected. Remind your children that cancer kids didn’t choose to be victims.”
Magdalene, Mama Jean.
“For caregivers to succeed in this journey, they may need to choose a small circle of friends or relatives with a positive attitude. This is not the time to share the downsides of chemo because we have no other alternative. We have no qualms with dropping negative friends or relatives during this juncture, stay positive if you wish to join a family’s journey with overcoming cancer”
Mama Lesley.
“As parents to kids with cancer, all that is in our mind is to get a cure for our baby, but other people are so insensitive in suggesting cheaper hospital options. Its sad to compare my baby’s life to monetary value even while in HDU when my baby was fighting for his life.”
Esther, Mama Trevys.
“With regards to children approaching or in the adolescent stage, we all know the confusion here. For those on chemo, body image is compromised. Loss of hair, some get oral sores/lesions, etc. They need extra guidance and assurance more than normal teenagers, so one needs to be patient.”
Gladys, Mama Ron.
“Spouses approach and react differently to the diagnosis and subsequent chemo treatment. Mothers tend to follow instructions explicitly and dads can view this unfairly as paranoia. Fathers still want to believe that their kids are still strong and still deserve a normal child’s life. In this regards, fathers are seen as reckless. If these differences are not handled, it brings arguments and fights between the spouse”
Ephantus, Baba Trevys.
Expert Tip: Dr Doreen Mutua, Paediatric Oncologist.
Early detection and diagnosis of childhood cancer saves lives! Unfortunately there are no specific symptoms and signs of cancer in children. Therefore if symptoms persist even with appropriate symptoms… remember your child may need to be evaluated for cancer.
“When dealing with all the above, insurance/money runs out. You then need to fund-raise. Its a humbling experience but knowing you are doing it for your baby helps to hold your head up high. Childhood cancer is treatable and these children can go on to be useful citizens of this great country. Lets fight for our children’s future. I am a hope addict!!
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