In Part 1 of this series we explained that this series of articles is not meant to be medical advice, but a guide that may help you as a parent of a newly diagnosed child with cancer cope just a bit better. Information is knowledge, and never more so than when you are dealing with childhood cancer!
These articles are meant to help you be the key part of your child’s treatment that you will need to be.
Take what works for you according to your situation and your child’s temperament, personality, fears, strengths, and how they deal with adversity, and leave what does not pertain to your situation.
Part 5 will deal with Different Types of Treatment and Possible Side-Effects of that treatment. As this is quite a long section, it will be split it into 5(i) Surgery 5(ii) Chemotherapy 5(iii) Radiation Therapy 5(iv) Immunotherapy and Bone Marrow and Peripheral Blood Stem Cell Transplants.
Complementary and Alternative Medicine treatment (CAM) is very involved and will contain a lot of information, so that will be dealt with separately in Part 6 of this series of articles.
Childhood Cancer Treatment
Treatment for childhood cancer is not the same for every patient; a treatment plan is drawn up for each individual according to various factors.
Your child’s doctor and oncology treatment team will collaborate to draw up a treatment plan based on the type of cancer, the stage of the disease, your child’s general health, your child’s age, and various other factors.
Once the team has all the facts, a detailed treatment plan will be drawn up, outlining the exact treatment your child will receive, how often the treatment will be given, and how long the treatment will last.
Treatment plans are strictly individualised, so even children with the same type of cancer may not get exactly the same type of treatment. The oncology team will monitor your child’s response to the treatment, and may change the treatment plan if it seems that the treatment is not working effectively; they may even change the type of treatment completely.
The doctor will discuss your child’s treatment plan with you, ensuring that you are fully aware of every detail of the plan, including any risks, benefits and side-effects. The treatment team will also support you when talking to your child about their treatment and will answer any questions either you or your child have.
The treatment plan may sound very complicated and involved, and you as a parent may feel rather overwhelmed with all the information, but once both you and your child get used to the routine it will become easier. It is a good idea to ask for a print-out of the treatment plan, as it will help you and your child, if they are old enough, to plan your schedule(s).
Do not be afraid to ask questions of either your child’s doctor or the treatment team if there is anything that either you or your child do not understand. Remember, you as the parent are an integral member of the treatment team too!
Different Types of Childhood Cancer Treatment
The most common types of treatment for cancer include surgery, chemotherapy, radiation therapy, immunotherapy, and bone marrow or peripheral blood stem cell transplantation.
These treatments are used to destroy the cancer cells, and your child’s treatment team may decide to either use just one method of treatment or, more often than not, will employ a combination of treatments, called combination therapy.
Cancer is not an easy disease to treat, and unfortunately some of the treatments used cause unpleasant or unwanted side-effects such as hair loss, nausea, and diarrhoea. Side effects happen because unfortunately some of the cancer treatments not only kill the cancer cells but can also damage some of the healthy cells.
Bear the following in mind as your child starts their cancer treatment:
- Your child’s doctor will plan the treatment so that your child has as few side effects as possible;
- The type of side effects your child experiences and how bad they are will depend on the kind of drug used, the dosage given, and the way your child’s body reacts;
- There are various ways to lessen your child’s side effects. Talk to the treatment team about things that can be done before, during, and after treatment to make your child more comfortable;
- Sometimes the team may decide to lower the treatment dosage slightly to help lessen or even eliminate unpleasant side effects. This will generally not make the treatment less able to destroy cancer cells or hurt your child’s chances of recovery; and
- Most side effects go away soon after treatment ends.
Not every child will suffer side-effects, and some children get very few. Side-effects will differ from child to child, even those who are receiving the same treatment. Your child’s doctor will be able to tell you what side-effects you can expect your child to possibly have based on the treatment plan, and how to deal with them should they occur.
Surgery is an essential part of the treatment for many solid tumours. Surgery is performed as a local therapy to remove the tumour. Surgery to remove a cancerous tumour may include removing the surrounding tissue and any nearby lymph nodes.
Chemotherapy or Radiation is generally used first in order to shrink the tumour before it is removed, making the surgery easier.
Helping Your Child Face Fears about Surgery
It is normal for a child to be worried about having surgery and to ask questions like:
• What is it like to be put to sleep?
• Will I feel a lot of pain?
• Will I wake up again?
• Will my body be different when I wake up?
• How will I feel about my body after the operation?
• Will you be there during my operation?
• Will you be there when I wake up?
The best ways to help allay your child’s fears of surgery are:
• Give honest answers: Your child needs to know that they can trust you, and if you do not give them honest answers and that happens is not as you say, they may lose trust in you;
• Learn as much as you can about your child’s pending operation: In order to give the correct answers, you will need to learn as much as possible about what will happen. Ask your doctor and members of the treatment team to give you all the facts so that you can prepare your child;
• Visit the operating and recovery rooms before the surgery: Ask if you can take your child to see the operation and recovery rooms briefly and talk to the team who will perform the operation. Ask if they can be shown a surgical mask, and perhaps even try one on. This will help the child to feel at ease about the operation, and not to be scared when they see the team with masks on.
• Talk with your child about their concerns and feelings: It is very important that you try to get your child to talk about any feelings or concerns they may have regarding their upcoming surgery.
Possible Side Effects of Surgery
As with other cancer treatments, there are some possible side-effects to surgery; what they are will depend on the location of the tumour, the type of operation, your child’s general health, and various other factors.
Common side effects of surgery could include pain, nausea, headaches, and constipation, and could occur as a result of the surgery itself, pain medicine or lack of exercise. Your child’s treatment team will administer medicine as directed by the doctor, as and when needed, to ease the side effects.
Amputations for childhood cancer are not as common as they once were, as more and more modern procedures are employed in order to spare the limb. Sometimes, however, depending on the type of tumour, amputation may be necessary.
Amputation is always of huge concern to children, as they will be scared and may wonder:
• What it will be like not to have an arm or leg?
• Will I still be able to play sport?
• Will I be able to do normal everyday things?
• How will I do them?
• How will other people, especially other children act toward me?
Your child may feel a lack of wholeness after surgery. Younger children generally adjust more quickly to an amputation; it is sometimes more difficult for parents than for children to adjust to an amputation.
A teenager may have other concerns, such as how they will look to others, whether the amputation will affect any developing relationships they may have, how it will affect sporting and other physical activities, or their chances of getting married and having children.
One way of allaying their fears is to have them meet other children who have had amputations and have adjusted well to them. This will enable your child to see that they can still have a full and active life – most childhood cancer amputees can participate in the same activities they did before having their amputation. They will still be able to walk, run, cycle, swim, ski, and even mountain-climb.
Another thing that may be very helpful is if the treatment team could show your child an artificial limb, or prosthesis, and other devices or aids that will help with movement. This will allow them to see and feel the artificial limb and touch it and familiarise themselves with it so that they will not be so scared.
When they awaken, your child will most probably be very aware of a bandage or even a bulky dressing at the site of the surgery. It is also quite common for those post-amputation to feel “phantom pain,” which is an eerie feeling that manifests as itching, cold, and pain, as if the limb were still there.
It is not known what causes “phantom pain.” It is thought that because the brain has been so accustomed to receiving messages from the nerves in the limb that has been amputated, it takes a while for the brain to get used to the remaining nerve fibres and the new messages from the stump. A light massage and changing of the position of the stump often offers relief.
Your child’s doctor will usually start medicating ahead of time in order to ease your child’s pain from the surgery, and may order further medication to treat the phantom pain if it happens.
Rehabilitation after surgery will include a physical therapist helping your child do exercises to strengthen the muscles needed to support a temporary prosthesis. It is important that you prepare your child mentally for these exercises, as they can be hard and painful, and you will need to offer support and encouragement during this time.
Once the muscles become stronger, a temporary prosthesis may be ordered by your child’s doctor. A prosthesis is made by a prosthetist, someone who is skilled in making artificial limbs. A temporary prosthesis may be bulkier and heavier than the permanent one, and not look that great, but remember this is just temporary and the added weight will further strengthen the stump and the bulkiness will protect it. It is important that you explain this to your child.
Once the stump is fully healed and your child is able to move the limb easily with the temporary prosthesis, fitting for the permanent prosthesis will begin.
Remember, if you are not sure of anything, speak to a professional on your child’s oncology treatment team; they will be only too glad to help give you information or allay any fears you or your child may have regarding the treatment.
You are not alone in this; there are many individuals out there able and willing to lend a hand, some support, or even just listen – do not be afraid to reach out for help!
Do some research on the internet, reach out to an organisation like Little Fighters Cancer Trust for a bit of support and information and/or access to resources that will help you find out more and make an informed decision regarding your child’s treatment.
Part V(ii) of this series will deal with “Chemotherapy”