Your Child: Lines, Tubes and Ports This Publication Is Intended to Supplement the Advice Given by Your Child’S Medical Team

Grace Kelly Childhood Cancer Trust Your child: Lines, tubes and ports This publication is intended to supplement the advice given by your child’s medical team. It was written by Dr Jennifer Kelly, GP and founder of the Grace Kelly Childhood Cancer Trust.

Our thanks go to Dr Bob Phillips (Honorary Consultant in Paediatric Oncology, LTHT), Professor Bernadette Brennan (Paediatric Oncology, Manchester), Dr Laura Roe (Consultant Paediatrician with a special interest in oncology and palliative care, UHNM), Evelyn Ward (Clinical Dietetic Manager, LTHT), Alix Dunlop-Jones (Senior Paediatric Dietitian, LTHT), Linda Sanderson (Nurse Educator for CLIC Sargent, Leeds) and Dominique Miller (Paediatric Dietician, UHNM) for their help in the peer review of this resource and to Allison Semikin for her help as a parent reviewer.

The Grace Kelly Childhood Cancer Trust has made every effort to ensure information is accurate at the time of printing. We are unable to accept responsibility for any information provided by third parties. If you would like more information on the references used to make this publication, please contact us.

The publication of this booklet was funded by the Grace Kelly Childhood Cancer Trust and produced following the guidance of the Information Standard.

About this booklet

If you are reading this, the likelihood is that your child, or a child close to you, has been diagnosed with cancer. This booklet is designed to be an information summary and to answer some of your questions. If you have any queries, please discuss them with your healthcare team.

When a child is diagnosed with cancer you suddenly have to make decisions about things you previously knew very little about. This booklet has been written to help give you more information and to answer some of your questions. We have also included a section on useful tips from parents whose children have experienced some, or all of these devices.

At the back of the booklet, there is a glossary of terms for more information. Words that are included in the glossary are highlighted in bold in the main text. 2 www.gkcct.org

Central access

When a child is diagnosed with cancer, they are usually fitted with a special line or port through which most of their treatment can be given. These devices are called central vascular access devices.

These devices mean that blood tests and treatments (such as chemotherapy) can be done as safely and as efficiently as possible whilst causing the least upset to you and your child.

There are various devices available, but the main types are central venous catheters, vascular ports and peripherally inserted central catheters. The most suitable device for your child will depend on their age, size and the reason they need to have one. Doctors will only Central Venous Catheters suggest the use of central venous access devices if your child needs frequent or Children with cancer are usually fitted with long-term treatment that needs regular a central venous catheter through which access to their bloodstream. they receive their treatment. There are three main types: central lines, vascular access ports and picc lines.

Your child: Lines, tubes and ports 3 Central lines Once in place, if your child does not need to stay in hospital for treatment, you can return Often known as a HickmanTM Line, home. Your child’s care team will provide BroviacTM line, central line or wiggly, this is you with instructions on how to care for a soft thin tube (catheter) that is inserted your child’s line at home. They will usually whilst your child is under a general contact your child’s community nursing anaesthetic. It is inserted into a large vein team who will help you to care for your in the neck and then tunnelled under the child’s line. Usually this involves a weekly skin to come out on the chest wall below dressing change and flushing of the line. the collar bone.

When your child wakes, they will have two tiny incisions. The first is in the neck and A central venous catheter is usually closed with paper stitches, and gives direct access to the the second is where the line comes out. blood stream so care for the This is held in place by a stitch and a see- line is very important, to limit through dressing. the chances of infection.

A central line is designed to give long term venous access for your child. Although this sounds daunting, your child will soon adapt to having a central line. Many children can appreciate their line because they understand it reduces the need for blood tests and cannulas. Although it looks like only one line, a central line actually contains two (or very occasionally three) tubes which divide out into two (or rarely three) ends to allow more than one medication to be given at a time. This makes giving treatment that little bit easier. 4 www.gkcct.org Vascular Port

Also known as an implantable port or portacathTM, this device is placed under the skin in the chest. It consists of a small chamber with a catheter attached. This catheter is then threaded under the skin and into a large vein. The port gives easy and reliable access to your child’s bloodstream and sits just below the skin.

A vascular port is fitted when your child is under a general anaesthetic. When they wake up, they will have two small incisions: one by the port site and the other in the Once accessed, a port can be used for up neck where it was inserted into the vein. to a week at a time so there is no need for a separate needle for every procedure. When a treatment cycle is finished, the needle is removed (the port is de-accessed). This is a simple procedure undertaken by trained staff; the needle just pulls out of the port.

To use the port (to access the bloodstream), a special type of needle is inserted through the skin into the chamber in the vascular port. The skin where the needle is inserted can be numbed using a local anaesthetic cream or cold spray. Usually a port only has one chamber, but it is possible to have a port with two chambers (lumens) which would allow more than one infusion to be run at the same time. How a port may look once the site of insertion has healed

What is pain?

Pain is an unpleasant feeling that can occur as a result of an injury, Why it is important to target pain illness or medical procedure. You do not need to see physical damage to Pain is a symptom that most children have pain and it can affect infants will find distressing. When pain is not and children of all ages. adequately controlled it has a big impact on how happy your child is and Very young children and those with causes anxiety for you both. Assessing disabilities may find it difficult to tell us and managing pain appropriately about their pain, so we use a number of makes a huge difference to your child’s Please see our booklet “Managing your child’s pain,” for further advice ways to assess the amount of pain they experiences and allows your child to play are experiencing. and “be a child”.

Why do children with cancer experience pain?

Children with cancer can experience pain on pain management during needle procedures for your child. for a number of reasons. Both cancer itself and the treatments that your child needs to undergo may cause pain. Blood tests and other procedures, surgery, chemotherapy and radiotherapy can all result in pain. Each child is unique in how they experience pain so every effort will be madeGrace by your Kelly child’s team to minimise the pain theyChildhood experience. Cancer Trust

Managing your child’s pain Managing your child’s pain 3 Your child: Lines, tubes and ports 5 Which Device should we choose? Dependent on the age and size of your child and the type of treatment they require, they will usually be offered a central line of some sort. Certain treatment regimes are better suited to a certain device so your child’s care team will help to guide you as to which device is most suitable for your child.

Hickman line Vascular port

Accessing the line No need for a needle to Requires a needle to access (taking a blood sample) access the line and can the line. This can be made be accessed even when easier with numbing cream sleeping. Excellent for a but can be distressing for child distressed by needles. some children.

Bathing Bathing in a shallow bath Once healed and not only and the line needs to be accessed, there are no issues taped out of the way. with bathing.

Swimming No swimming due to Once healed and not infection risk unless using a accessed, swimming is specialised dry suit. possible in between treatment courses.

Dressings Weekly dressing changes Once healed and not required. These can be accessed, there is no need distressing for some children. for dressings.

6 www.gkcct.org Hickman line Vascular port

Infusions Easier to run multiple More challenging to run infusions if a lot of multiple infusions unless a medications are needed. double lumen port is used.

Emergencies Must take emergency Unless port is accessed, dressings and clamps with special emergency you wherever you go. equipment not required.

Physical activity Greater limit to physical Participation in physical activities due to risk of activities is easier but contact damaging lines. More easily sports are still not advised. damaged.

Size Larger and more Smaller and more discreet. cumbersome. Lines can be seen through clothes (often a problem for older children).

Reminder Physical reminder is Once healed after insertion, constantly there which can there is little physical cause added anxiety for reminder once hidden under child and parent in between clothes. treatments.

Risk of damage Young children may tug or Less easily damaged. pull on the lines.

Infection Provides direct contact to When not accessed and fully the blood stream meaning healed, infection less likely there is an increased risk of than for a Hickman line. infections. Children need to be monitored closely for signs of infection.

Your child: Lines, tubes and ports 7 Peripherally inserted central catheters If your child needs long term treatment, they are usually fitted with avascular port or central venous catheter. For shorter courses of treatment, or to tide them over until another type of device can be fitted, they may be given a peripherally inserted central catheter (PICC).

When a PICC is inserted, a catheter is A PICC line gives direct inserted into a vein in the arm just above access to the blood stream the bend of the elbow and threaded so care for the line is very through the vein towards the right important to limit the hand side of the heart. A PICC is usually inserted under general anaesthetic chances of infection. Your but is occasionally done under local child’s care team will give anaesthetic. It is kept in place in a variety you instructions on the best of ways and then held down with a see- way to do this. through dressing.

8 www.gkcct.org Feeding for children with cancer

Chemotherapy, radiotherapy and other treatments can cause children to struggle to eat enough food to keep their weight stable. Treatments can make them feel sick, alter their sense of taste or make it uncomfortable to swallow.

Eating hospital food and being away from home can also mean a child does not eat as much as normal. It may be that eating high energy snacks and meal supplements along with small frequent meals may be enough to keep your child’s weight steady. A dietician will usually be available to provide advice on your child’s nutrition.

However, if your child is becoming upset by eating, or is not managing to maintain their weight, it may be better to have a nasogastric tube (NG) or percutaneous endoscopic gastrostomy (PEG) fitted. Through this they can be given the extra nutrients they require, usually in the form of a specialist feed. Alternatively, some children may be fitted with a PEG before their treatment commences to avoid feeding struggles.

Your child: Lines, tubes and ports 9 Nasogastric tube

A nasogastric tube is a thin, soft tube that is passed through the nostril, down the throat and food pipe (oesophagus) and into the stomach. Once inserted, it is usually held in place with tape.

An NG tube can enable your child to receive feed directly into their stomach when they feel unable to eat. If they are struggling with sickness, this feed is often given slowly whilst they are asleep. An NG tube can also be used for feeding if your child has problems with sucking and swallowing.

Inserting an NG tube Most oral medications can be given down a Inserting the tube is usually quick and it nasogastric tube which goes down relatively easily if your child is can reduce the stress of able to stay relaxed. The tube can be quite uncomfortable when being passed but having to take unpleasant once in place most children get used to it tasting medications. relatively quickly. Occasionally, some children with cancer opt to have an Where possible, it is worth asking for a NG tube simply to take their play therapist to be at hand to help distract medicines if they struggle your child during the procedure. This will make it less stressful for you all. Once in to take them orally. the correct location, it will be taped onto your child’s cheek to help keep it in place.

10 www.gkcct.org Care of a nasogastric tube Tips to help your child keep their NG tube in: When your child has an NG tube, it is important to follow the advice given to • Lots of praise and encouragement. you by your child’s care team on how to look after and use the tube. It will need • Distraction whilst they get used to it. changing every few weeks depending on the type used. • Hold onto the tube by pinching their nose if they do a big sneeze or are sick. Unfortunately, the NG tube can This can help stop it coming back up. sometimes come out. Young children will However, if it does come back up, just let it. sometimes pull it out or it may come up It is important not to push it back down. if your child vomits or sneezes forcefully. If your child vomits, occasionally the Nasojejunal tube tube may come up and come out of their mouth. This is easily dealt with by pulling Sometimes, your child may not be able to the NG tube from the nostril. You will be tolerate feeds directly into the stomach. given advice on this by your child’s care If this happens, one option is for them to team. If your child’s NG tube comes out, have a nasojejunal tube. often it will mean a trip to the ward to have it reinserted. This is where the tube is passed into the stomach and then guided through into the jejunum (part of the small intestine). This can make a big difference to a child in tolerating feeds.

A nasojejunal tube can be a little more complicated to insert and care for, but your child’s care team will help support you if your child were to need one.

Your child: Lines, tubes and ports 11 Gastrostomy feeding device

This is a device used for feeding and it is inserted via a small incision into your child’s stomach. A gastrostomy is often used if your child has been reliant on a nasogastric tube for a while and is likely to need a feeding tube in the long term as it can be more comfortable and safe option over time. It is also more discreet which is especially important for older children.

A gastrostomy device is often used in children who have tumours on their face, or neck. Surgery and radiation can make these areas unsuitable or uncomfortable to have a nasogastric tube passed so a gastrostomy feeding device is fitted before treatment commences.

When first fitted, usually percutaneousa endoscopic gastrostomy (PEG) is used. In time, this is often replaced with a balloon device (a button or tube) which is a little less bulky. There are a number of different devices available so your child’s team will talk through the options with you.

How long will my child need to be tube fed?

Your child will need to be tube fed until they are able to eat or drink enough by mouth to meet their nutritional needs. Some children will have medical conditions that mean they may always need some degree of tube feeding, but others often reach the end of intensive treatment and start increasing their oral intake again. Over time this often means the feeding tube can be removed.

12 www.gkcct.org Useful tips for the care of lines, also make them and give them out free ports and tubes of charge. There is also a company that makes shower proof central line holders • Dressing changes can be quite that can make showering that little bit upsetting for some children. To make easier. For more information, take a look dressing changes that little bit easier, it is at www.centrallineholder.com possible to get adhesive remover sprays It is important to ask your child’s care and wipes. An example is AppeelTM team if these would be suitable for your spray which is usually available on child before using them. prescription and can also be bought over the counter. Many children find this • It is also possible to get feeding tube pads makes a big difference. made out of material to go around PEG tubes and buttons as an alternative to • If your child’s skin is becoming irritated sticky tape and dressings. Many parents by dressings, it is worth asking your find these are kinder to their child’s skin. nurse about barrier sprays that can be Speak to your child’s care team to check put underneath the dressing to protect that they could be suitable for your child. the skin. • A major retailer has brought out a clothing range for children with additional needs. Included is a body vest which has poppers along the tummy to give assess for a feeding tube or wiggly.

• Some charities can offer the loan of “Dry suits” to enable children with a central venous catheter to go swimming safely.

• Many wards stock “wiggly bags” for your child to put their lines in when they are not in use. A number of organisations Your child: Lines, tubes and ports 13 A Glossary of terms for parents

Cannula (Intravenous) General anaesthetic A tiny, flexible tube that is placed in a vein, An anaesthetic that affects the whole body often in a hand, arm or foot. It can be used - the child is put to sleep and is free from to give medicines or fluids. pain. This is given by an anaesthetist.

Catheter Local anaesthetic gel A thin tube used to take liquids out of the A gel which is put on the skin to numb it body or to put liquids (for example fluids for 4 – 6 hours. It is useful for blood tests, and medicines) into the body. port accessing and minor procedures. Examples include AmetopTM, EmlaTM. Central vascular access devices These provide access to your child’s Nasogastric tube (NG) bloodstream via a large vein to enable A thin, soft tube that is passed through treatment to be given more easily. They your child’s nostril, down the throat and include central venous catheters, food pipe into the stomach to provide vascular ports and peripherally inserted fluid, food and nutrients. central catheters. Nasojejunal tube (NJ) Central Venous catheter A thin, soft tube that is passed through Also known as a central line, Hickman your child’s nostril, down the throat and Line or wiggly. This is a soft tube that is into the stomach and then small bowel. inserted whilst your child is under a general anaesthetic. It is designed to give permanent Percutaneous endoscopic venous access to give medications, fluids gastrostomy (PEG) and to take blood samples. A way of introducing food, fluids and medicines directly into your child’s stomach by passing a thin tube through the skin and into the stomach.

14 www.gkcct.org Peripherally inserted central Vascular Port catheter (PICC) Also known as an implantable port or This is a thin tube which is inserted into portacath. This sits under the skin in your a vein in the arm above the elbow and child’s chest and has a small chamber threaded through the vein towards the which can be accessed with a needle. The right hand side of the heart. chamber has a thin flexible tube attached which then feeds into a major vein.

Other Publications

Please take a look at our website for details of our most recent publications.

Childhood What is pain? What is pain? cancer and going to the toilet Pain is an unpleasant feeling that Pain is an unpleasant feeling that can occur as a result of an injury, Why it is important to target pain can occur as a result of an injury, Pain is a common experience during illness or medical procedure. You do illness or medical procedure. You do treatment for cancer, but it usually not need to see physical damage to Pain is a symptom that most children not need to see physical damage resolves after treatment ends. When a child has cancer, it can have pain and it can affect infants will find distressing. When pain is not to experience pain. We know that Unfortunately, for some children, the pain impact on the simple bodily Children with cancer can develop and children of all ages. adequately controlled it has a big infants and children of all ages does not improve in the way we expect. functions that we normally take problems with constipation, diarrhoea impact on how happy your child is and experience pain, however young. This can be called chronic pain. for granted. This can be especially and controlling how and when they Very young children and those with causes anxiety for you both. Assessing upsetting for older children and pass their urine (wee) or faeces (poo). In disabilities may find it difficult to tell us and managing pain appropriately young people who may find this some children, this can result in urinary about their pain, so we use a number of makes a huge difference to your child’s embarrassing to talk about. incontinence or faecal incontinence or ways to assess the amount of pain they experiences and allows your child to play sometimes both. are experiencing. and “be a child”. Whatever the age of your child, the best Why do children with cancer approach is to be as honest and as open experience pain? as you can and to ask for advice when needed. Children with cancer can experience pain for a number of reasons. Both cancer At the back of the booklet there is a itself and the treatments that your child glossary of terms for more information. needs to undergo may cause pain. Blood Words that are included in the glossary are tests and other procedures, surgery, highlighted in bold in the main text. chemotherapy and radiotherapy can all result in pain. Each child is unique in how they experience pain so every effort will be madeGrace by your Kelly child’s team to minimise the Grace Kelly Grace Kelly pain theyChildhood experience. Childhood Childhood Cancer Trust Cancer Trust Cancer Trust

Managing your When pain does Going tofor childrenthe toiletwith cancer child’s pain Managing your child’s pain not go away When pain does not go away Going to the toilet / for children with cancer 3 3 3

Managing your When pain does Going to the toilet child’s pain not go away - for children with cancer

Grace Kelly Today I am getting my NG tube. Childhood It is soft and bendy and goes Cancer Trust into my nose. www.gracekellyladybird.co.uk www.gracekellyladybird.co.uk What is a rhabdoid tumour? What is a rhabdoid tumour?

Rhabdoid tumours are rare tumours that mainly occur in young A rhabdoid tumour is a rare childhood cancer that can start in the kidneys, children. Rhabdoid tumours include malignant rhabdoid tumours brain, spine or other part of the body. There are 3 main types of rhabdoid I need an NG Tube (MRT), extra renal rhabdoid tumours (ERRT) and atypical teratoid tumours, grouped together by the locations in which they originate: rhabdoid tumours (AT/RT). Most rhabdoid tumours in children occur simply due to chance 1. (sporadic). However, some do occur as part of a hereditary syndrome Malignant renal rhabdoid tumours (MRT) - these occur or originate in the kidney (renal). called Rhabdoid Tumour Predisposition Syndrome (RTPS). 2. Extra renal rhabdoid tumours (ERRT) - these occur elsewhere in If your child is diagnosed with a rhabdoid tumour, your medical the body, such as in the liver, lungs, skin and other soft tissues. team will refer you to a clinical geneticist who will talk to you about rhabdoid tumours, their genetics and potential risks. 3. Atypical teratoid / rhabdoid tumours (AT/RT) - these affect the brain and spinal cord (central nervous system).

Confusingly, the term malignant rhabdoid tumour is sometimes used as a general term to describe extra renal rhabdoid tumours as well. For example, some consultants may refer to a

liver (hepatic) rhabdoid tumour

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A children’s guide to having a nasogastric tube 3 A children’s guide to having a nasogastric tube

I need an NG Tube The Genetics of Rhabdoid Extra Renal Rhabdoid - a children’s guide to having tumours - information tumours - information a nasogastric tube for parents and carers for parents and carers

www.gracekellyladybird.co.uk www.gracekellyladybird.co.uk What is a rhabdoid tumour? What is a rhabdoid tumour?

A rhabdoid tumour is a rare childhood cancer which may start in the A rhabdoid tumour is a rare childhood cancer that can start in the kidneys, but can occur in the brain, spine or other parts of the body. brain, spine, kidneys or other parts of the body. There are 3 main There are 3 main types of rhabdoid tumours grouped together by the types of rhabdoid tumours, grouped together by the locations in locations in which they originate: which they originate:

1. Malignant renal rhabdoid tumours (MRT) - these occur or 1. Atypical teratoid / rhabdoid tumours (AT/RT) - these affect the originate in the kidney (renal). brain and spinal cord (central nervous system). 2. Extra renal rhabdoid tumours (ERRT) - these occur elsewhere in 2. Malignant renal rhabdoid tumours (MRT) - these occur in the the body, such as in the liver, lungs, skin or other soft tissues. kidney (renal). 3. Atypical teratoid / rhabdoid tumours (AT/RT) - these affect the 3. Extra renal rhabdoid tumours (ERRT) - these occur elsewhere in brain and spinal cord (central nervous system). the body, such as in the liver, lungs and skin.

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Malignant Renal Rhabdoid Atypical Teratoid / Rhabdoid tumours - information tumours - information for parents and carers for parents and carers Your child: Lines, tubes and ports 15 Grace Kelly Childhood Cancer Trust

The Grace Kelly Childhood Cancer Trust is a UK children’s cancer charity that concentrates on funding research and providing support for children with rare childhood cancers. We also work to provide education on the signs and symptoms of childhood cancer and how it may present.

For more information please see our website.

Grace Kelly Childhood Cancer Trust www.gkcct.org

gracekellychildhoodcancertrust

@GraceKellyTrust

Registered charity number 1167783.

Information produced following the principles of The Information Standard.