DBA UK Conference 16th - 18th May 2014

BMT…what to expectPractical elements of having a bone marrow transplant

HEPA filtrated cubicle…a temporary home….

Preparing your child for admission

✤ Talk honestly with your child about the admission and what it will involve

✤ Make a plan of who will be staying with them and when and who will look after their siblings and pets while they are in hospital

✤ Make a list of things they wish to bring in for hospital

✤ Read the preparation material you have been given and ask lots of questions if you have them

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How do I prepare for my child’s admission?

✤ Employer - explain your situation and have a plan of what you are going to do, can you work flexibly? can you take leave? can you work set days?

✤ Friends & family - identify those who are good for emotional support and those who are better at practical solutions. Pick your 3rd carer if you have one

✤ Divide your jobs between you for your home life and balance them with being at the hospital

✤ Now is not the time for major home improvements, life changing events or the addition of pets to your family home

✤ Think of something to do to record your journey through transplant, it will help you to explain to your child as they get older exactly what you have all been through

Family & Friends

✤ Isolation and decreased social activity takes its toll…go out to open areas and make use of facilities that are quieter during the day

✤ Have a family gathering before your admission for BMT

✤ Family and friends may be able to offer practical help during transplant and the immune suppression period

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Managing stress✤ Take one day at a time and let

the events of the previous day go

✤ Don’t bottle things up…if you feel it. Say it.

✤ Stay positive, your child may sense anxiety and stress

✤ Think of how you manage stress in other situations and how you may be able to relieve it whilst you are admitted with your child

Investigations and preparation for BMT admission

✤ Blood tests: performed on donor and recipient, HLA typing done in duplicate & virology

✤ Scans: full comprehensive assessment is done on the recipient as we know that DBA is a condition affecting the entire body, additional tests are done such as a GFR

✤ Fertility review: age dependent and needs to be clinically stable prior to proceeding to BMT

✤ Iron overload and chelation: chelation is intensified and re-evaluated on a 3 monthly basis with FerriScans, once the iron is within the accepted range proceed to a repeat liver biopsy to ensure scarring has been reversed

✤ Dental reviews: infection prevention, dental caries pose a serious risk of infection once immune suppressed and in the presence of mucositis

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A daily planThe play specialists will meet with you and develop a daily plan. A routine is helpful to help the child cope while they are admitted.

We are admitted - what happens now?✤ The first day (or d- 10/9/8 depending on your

conditioning protocol) is day to come in and settle down, find your way around the ward while we monitor your child for 24 hours

✤ Commence prophylactic medication to protect against viruses and bacteria

✤ A medicine given via a nebuliser (pentamidine) is given on admission and then every 4 weeks whilst immune suppressed. Females of child bearing age should not be present in the room while this is being given - A job for the Dad’s!

Practical jobs…

✤ Daily showering - avoiding the Hickman line

✤ Mouth-care

✤ Moisturising

✤ Encouraging food and drink

✤ Collection of all bodily fluids

✤ Medication

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Day 0 - transplant day

✤ Plan a way to celebrate the day

✤ The infusion length can vary depending on the source of the cells

✤ If you are having a combination of different stem cell sources it may be given over 2 days

✤ Sibling donors: how does the harvest happen?

✤ Unrelated donors: how do the cells reach us?

✤ Adult related & halpo-identical donors: the adult haematology service and donating GCSF primed bone marrow

Waiting for engraftment

✤ This is often the most turbulent and unsettling time - waiting is never fun…

✤ This is the point where your child will most likely have an infection or develop one of the complications associated with BMT: VOD/mucositis/GVHD

✤ Hair loss occurs

✤ Difficulty with maintaining adequate nutrition and fluid intake

Getting ready for going home!

✤ Practice drawing up and giving the medication and remembering the do’s & dont’s of a particular drug

✤ Getting the house ready for a immune suppressed child

✤ Overnight leave

✤ Be prepared to be re-admitted at short notice

Long term follow up

✤ Iron overload

✤ Lifelong penicillin prophylaxis

✤ Revaccinations

✤ Annual assessments