The Information Book Edition 3 - Paediatric Integrated Cancer Service

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Participation in a clinical trial is voluntary. It is important to know that if youdecide that you or your child will not participate then the best known andestablished treatment will be given. You can withdraw yourself or your childfrom a trial at any time, without any effect on the ongoing medical care.What happens if side effects occur from taking a medicine ina clinical trial?By the time a medicine reaches the clinical trial stage it has already beenextensively tested for likely side effects. However, especially with newmedicines, there might be additional side effects. It is not possible to predictin advance if any side effects will occur but, if they do, appropriate care willbe provided to you or your child.What happens with the results from clinical trials?The results of clinical trials are made available to doctors so that they canbe used to improve future treatment for other children and adolescents. Theresults are also published in medical journals and other relevant publications,and are available on the internet.In addition, study doctors will be notified of the results of the study as theyare made available. Records are reviewed during the trial and if importantinformation is discovered, it will be reviewed. All details about your or yourchild’s treatment are kept confidential even when the results of the study arepublished. Results of the treatment will be analysed, but confidentiality isassured.What else do I need to know about clinical trials?Questions you can ask include:• What is the purpose of the study?• What are the treatment choices for me or my child?• Why is this treatment expected to be effective? Has it been tested before?• What kind of tests and procedures are involved?• How do the possible risks, side effects and benefits of the study comparewith the standard treatment offered?• What will I or my child have to do as a part of this clinical trial that isdifferent from standard treatment?• How long will the trial last?• Will it be necessary to be hospitalised?Cancer Sec.3.27Updated July 2012
• What will happen if I or my child suffers a serious side effect as a resultof the trial?• Will I or my child have access to the treatment after the trial is over?”Whatever your decision, your child will still get the best known and establishedtreatment.A decision not to participate in a study will not affect the Children’s CancerCentre team’s attitude towards you or your child.Sec.3.28 CancerUpdated July 2012
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The Information Book has been devel
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4Updated July 2012
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2.2.1 Monash Children’s2.2.2 The
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4 ContentsUpdated July 2012
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CCC fax 9345 6524RCH Consumer liais
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Ronald McDonald House - Monash Medi
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Social WorkSocial Work Department 9
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YOUR CHILD’S DIAGNOSIS:Your child
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Your child’s treatment plan or pr
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Sec.1:6 Your ChildUpdated July 2012
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The ward - Kookaburra WardLocation:
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WaitingSometimes there can be a wai
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At the hospitalThe following table
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ServicesOthersFamily Resource and R
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• Meals prepared at home must be
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• Encourage your child to partici
Page 43 and 44: Quick HelpIf you are concerned abou
Page 45 and 46: The wardLocation: Level 4, Main bui
Page 47 and 48: Children have a variety of treatmen
Page 49 and 50: ServicesLaundry Available in the Ro
Page 51 and 52: Being with your childParents are we
Page 53 and 54: Discharge planningPlanning for disc
Page 55 and 56: Quick HelpIf you are concerned abou
Page 57 and 58: The wardLocation: 9th Floor, Tower
Page 59 and 60: If you and your child have not met
Page 61 and 62: At the hospitalThe following table
Page 63 and 64: ServicesOthersActivity cupboard - g
Page 65 and 66: School-age children and adolescents
Page 67 and 68: Hospital locations, VictoriaRegiona
Page 69 and 70: Over the past fifteen years, the cu
Page 71 and 72: Tests and procedures to diagnose ca
Page 73 and 74: Lumbar punctureWith some cancers, s
Page 75 and 76: Cancer treatmentsOnce it is establi
Page 77 and 78: SurgeryMany children with cancer wi
Page 79 and 80: Hints to help your child take table
Page 81 and 82: Complementary medicine and alternat
Page 83 and 84: Side effects and what to doTreatmen
Page 85 and 86: Platelet countPlatelets are needed
Page 87 and 88: A number of medicines called ‘ant
Page 89 and 90: Hints for managing weight loss:•
Page 91 and 92: Other drugs containing Aspirin or I
Page 93: What are the benefits from particip
Page 97 and 98: What is LTF?Long term follow-up is
Page 99 and 100: Sec.3.32 CancerUpdated July 2012
Page 101 and 102: • If you live in the country your
Page 103 and 104: Chickenpox, Measles and MumpsThese
Page 105 and 106: Helping your child cope with illnes
Page 107 and 108: Helping your child cope with testsa
Page 109 and 110: • Breathing/relaxation: Telling y
Page 111 and 112: Offer a balanced dietGood nutrition
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Page 115 and 116: • Keep raw meats away from all ot
Page 117 and 118: Oral and dental careMouth careDurin
Page 119 and 120: How schools can support young peopl
Page 121 and 122: Suggestions to maintain links inclu
Page 123 and 124: Other educational support available
Page 125 and 126: Things to remember• A consistent
Page 127 and 128: Exercise and activity during treatm
Page 129 and 130: Taking care of your relationshipsHa
Page 131 and 132: • Some siblings benefit from canc
Page 133 and 134: With your workmatesSometimes, conti
Page 135 and 136: Sec.4.34 Caring for your child and
Page 137 and 138: Other Medical StaffClinical fellows
Page 139 and 140: Mental health clinicianMental healt
Page 141 and 142: Support StaffAdministrative staffTh
Page 143 and 144: Sec.5.8 Your child's treating teamU
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Other assistanceAmbulance transport
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It is the primary source for consum
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Childhood Cancer Support GroupsList
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LARCH —Auxiliaryof the RCHLeukaem
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Sec.6.10 Support and assistanceUpda
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Make A WishMyRoomRedkiteRonaldMcDon
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3. Qualifications of editorial staf
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• Use blogging provider sites wit
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8 Frequentlyasked questionsDuring y
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What is a high-energy drink for whe
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9 GlossaryWhat does that word mean?
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DRUG LEVELS - drug levels in the bl
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OSTEOSARCOMA - a cancer of the bone
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What does that abbreviation mean?AL
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Options for providing feedbackI wan
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