When your child is first diagnosed with lymphoma, it can be a very stressful and emotional experience . There is no right or wrong response...
When your child is first diagnosed with lymphoma, it can be a very stressful and emotional experience. There is no right or wrong response. It is often devastating and shocking, and it is important to give yourself and your family time to process and grieve. It is also important that you do not bear the burden of this diagnosis alone, there are a number of support organizations that are here to help you and your family during this time.
Questions to ask when your child is diagnosed
When your child is diagnosed with lymphoma, there are many questions you may want answers to but forget to ask. The whole experience can be very overwhelming and difficult to think clearly. Some good questions for the doctor include:
- What subtype of lymphoma does my child have?
- Is this a common or rare type of lymphoma?
- Is this lymphoma fast or slow growing?
- Can this type of lymphoma be cured?
- Where is the lymphoma in the body?
- When should treatment be started?
- Roughly how long will the treatment last?
- Does my child need to stay in hospital for treatment?
- Where does the treatment take place? – At our local hospital or at a larger hospital in a larger city?
- Is there a high risk of this type of lymphoma recurring after treatment?
- What impact will treatment have on my child's ability to have children of their own?
If your child becomes ill at home. Having a child diagnosed with lymphoma means that there will likely be a time when they become ill while under your care at home. This can be a very scary idea and you may want to prepare for it in advance. Preparation and planning ahead will help reduce the panic you may feel in the moment. Preparation helps keep you and your child on the path to getting better again.
Some ancillary preparations may include: Have the phone number of the cancer service at the hospital where you are treated ready. This information should be stored in an easily accessible place, such as the refrigerator. You can call the cancer service at any time and ask for advice from the specialist nurses there.
Always keep a spare bag for the hospital. This bag can contain some essential items for your child and yourself: a change of underwear, a change of clothes, pajamas and toiletries. Have your child's specialist doctor and diagnostic information at hand. This information will be helpful when you arrive at the emergency room. Emergency doctors want to talk to your specialist about your child's care.
- Having a plan for caring for other children for whom you are responsible – who can look after your other children if you need to take your child to hospital?
- Knowing the easiest way from your home to the hospital
- Knowing where to park in the hospital
Usually, when a child with lymphoma gets sick at home, it is usually because of one of two things: Infection
Side effects of lymphoma treatment .In most cases, both infections and side effects are very treatable and do not cause long-term problems. It is very important that you listen to medical advice and get treated as early as possible. Often side effects such as nausea, vomiting and diarrhea can be treated with hospital-prescribed medications. When symptoms are severe, your child may need additional help and may need to go to the hospital.
If you suspect your child has an infection, it is important to take them to hospital immediately as they will need treatment as soon as possible. If you cannot take yourself and your child to the hospital, call the ambulance. 000 (three zeros).
If you are concerned about your child's health and safety, call an ambulance. 000 (three zeros) .
How to monitor your child's temperature during treatment?
One of the signs that your child has an infection is a high fever. A high temperature is considered 38.0. 0 C or above – this is also known as having a fever or being feverish.
Children undergoing cancer treatment have weaker immune systems due to their treatment. Fever may be a sign that the body is trying to fight a bacterial or viral infection.
If you take your child's temperature and it reads 38.0 0 C or above - take them to the nearest emergency room immediately. If there is no way to get yourself and your child to the hospital, call an ambulance. 000' (three zeros) .
Fever after chemotherapy may be life-threatening
While your child is being treated for cancer (especially chemotherapy), it is good to take their temperature regularly as this will give you an idea of what a normal temperature is for your child. You may want to take a notebook and pen to record their temperatures. You can buy a thermometer from most pharmacies, but if this is a problem, talk to your hospital. A standard thermometer that measures temperature under the arm costs roughly $10.00 – $20.00.Take and record your child's temperature 2-3 times a day, roughly at the same time each day. A high temperature is considered to be 38.0 0 C or above. It's good to take your child's temperature in the morning so that if it's higher than normal, you'll know sooner rather than later. The goal is to catch fire as quickly as possible.
If you take your child's temperature and it is lower than 38.0 0 C but higher than normal, take it again in 1 hour. Avoid giving antipyretic medications such as paracetamol (Panadol) or ibuprofen (Nurofen). These medications usually reduce and cover the fever. A fever is a sign that your child's body will need help fighting infection.
If your child shows signs of being sick but does not have a fever, you can still take him to the hospital. Sometimes children are unwell with an infection but do not have a fever. Symptoms of being sick may include: Drowsiness, flat, sore throat, cough, difficulty breathing, runny nose and watery eyes, diarrhea, abdominal aches, vomiting, and headache. If your child shows a combination of these symptoms but does not have a fever, you can still take him to the hospital.
If your child has severe diarrhea or vomiting and is unable to reduce food and liquids, he or she will be at risk of dehydration and may need to go to hospital to have this dealt with. Dehydration can cause other complications and make your child sicker.
Your child's diet during treatment
Healthy nutrition for your child plays an important role at every stage of the cancer experience, including before, during and after treatment. For more detailed information about lymphoma and nutrition, follow the link Nutrition and Lymphoma.
- Unfortunately, some side effects of lymphoma and its treatment can affect your child's ability to consume a nutritious diet: Taste and smell changes
- Loss of appetite
- Nausea and vomiting
- mouth ulcers
- Abdominal pain and bloating
- heartburn
- Pain
Most of these side effects can be managed with some simple strategies and appropriate medication. Talk to your child's dietitian and healthcare team about management strategies. It can be difficult for your child to explain the reasons behind not wanting to eat, so be patient with them.
- Here are some helpful tips you can do to help your child have the best diet:Provide small, frequent meals
- It may be easier for your child to eat soft foods such as pasta, ice cream, soup, hot chips, pudding and bread.
Help your child drink as much fluid as possible
If you have concerns about your child's diet and weight, please talk to your child's dietitian. Do not give your child any herbal remedies or unusual foods without consulting the team treating your child.
School and Treatment
Your child's school education may be affected during this time. It is important to be open to the school about what your child's diagnosis and treatment will be like. If you have other children who attend school, this diagnosis is likely to affect their schooling as well. Most schools will be supportive and can try and provide a way to help your child continue learning during treatment.
Some hospitals have a hospital education system that can be accessed to support your child's learning. Talk to your nurses and social workers about educational options at the hospital.
- It is important to remember that your child's schooling and learning is important. While their health is the priority right now, missing school may be more of a social problem for your child than a long-term educational problem.
- Keep your child's principal and headteacher up to date on your child's condition and their ability to both attend school and complete any sets of work.
- Talk to the social worker and hospital cancer nurses about how to explain your child's lymphoma to his classmates.
- Prepare your child for any physical changes (hair loss) he or she may experience due to treatment. Discuss with the school and social worker how you will educate your child's class about the change in your child's appearance.
- Find ways for your child to stay connected to his or her social circle through phone calls, Facebook, Instagram, texting, and other ways to stay connected with their closest friends.
Red kite is a helpful organization that can provide a variety of services to support your child and family. They provide educational support.
Taking care of yourself
Being the parent or guardian of a child with lymphoma can be an exhausting and all-consuming task. It is very difficult to care for your child with lymphoma if you cannot adequately care for yourself. Some options for self-care during diagnosis and treatment include: Regular exercise, even a short walk or run outside, can make a difference.
- Making healthy food choices – convenience can often lead to unhealthy choices and leave you feeling tired and lethargic
- Socializing with friends – if you are to be able to support your child it is very important to stay connected to your own support network.
- limiting alcohol consumption
- Meditation and mindfulness practice
- Creating a regular sleep schedule for yourself
- Keeping a diary of your child's journey – this can help you keep track of things and feel more in control.
Information and supports for parents and carers
If you are the parent or caregiver of a child diagnosed with lymphoma, this can be a stressful and emotional experience. There is no right or wrong response.
It is important to give yourself and your family time to process and accept the diagnosis. It is also important that you do not bear the burden of this diagnosis alone, as there are a number of support organizations that are here to help you and your family during this time.
You can always reach our Lymphoma Care Nurses by clicking here. Contact button at the bottom of this page.
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