|Introduction||3. Summer clothing||6. Consider a PEG||9. Workout a rota|
|1. Fatten up your child||4. Lots of pyjamas||7. Become an entertainer||10. Over Christmas and The New Year|
|2. Get them drinking||5. Short hair||8. Look after yourself||11. Ask lots of questions|
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As we are now well into our second son's transplant we thought it worth committing to paper some 'tips' that we have learnt along the process of seeing a child up to and through a bone marrow transplant. This paper is not intended as a medical guide to BMT, we are far from qualified for this, but picks up on some of the useful practical tips that can help make the process easier - and that aren't always readily apparent as you prepare for transplant. Some of the tips require action months ahead of transplant (for example getting them to put on weight or drink more) but they should all make the process that bit smoother. Some of the comments are also potentially useful for adults preparing for transplant.
If you have any queries on the content of this paper then please check with your own medical staff. They are the ultimate authority and you should follow fully their guidance.
IMPORTANT - BMT treatments will differ from hospital to hospital and country to country and the protocol will change over time, so please take what we say here as generalisations only.
Often children going into transplant have limited 'fat' on their bodies due to the condition that the transplant is treating. However it can be expected that a child will loose upwards of 10% of their body weight during the transplant process. There will be times when they will not want to eat, or possibly with a sore mouth or throat simply unable to eat. And the weight does seem to come off very quickly.
So do all you can to add the kilos on before transplant, if you can 'fatten up' your child it will potentially make the transplant and recovery period easier.
We always thought our children did 'drink well' but were surprised at the additional volumes they were expected to consume once on the hospital ward. Because of the need, particularly through the chemotherapy stage, to 'flush through' toxins it is very useful if your child is a good drinker. For example it is expected that our 8 year old would drink around 1.7 litres of fluid a day (water, milk, squash, juice etc.) and our 12 year old around 2 litres. The actual amount is dependent on their body weight at time of transplant.
So again look to encourage your child to drink that little bit more, so that by the time they come to transplant they will find handling the volume easier. Also please be aware that the sterile water that they have to drink during a BMT tastes nothing like normal tap or bottled water. So we would recommend that you ensure that your child can drink water with a squash (orange, apple, blackcurrant etc.) This hides the flavour and makes the water much more palatable.
Despite the time of year you will almost certainly find that the ward temperature will be mildly tropical. So ensure that both you and your child dress appropriately. We have found that whilst on the ward our boys wore shorts and t-shirts for most of the time.
If you are looking at a transplant date in the autumn or winter be prepared to buy 'summer clothes' when you can.
For children not in nappies you should prepare to bring in a large supply of pyjamas and particularly pyjama bottoms. The children are likely to suffer from acute diarrhoea at some point during their transplant and accidents will happen. We have had nights when we have gone through 4 pairs of pyjama bottoms 9
So buy in advance of coming in, particularly if it is a transplant scheduled for the autumn or winter when you will want to buy 'shorties'.
One day about 7 to 10 days after transplant your child's party piece will be pulling out clumps of their hair….. and you may wake up one morning to find the child wearing what looks like mohair pyjamas. We found the most effective way of removing the hair is during bath time, when it can in effect be washed out. Electric trimmers are also available to be used.
For most boys the onset of loosing hair is no big deal, but we suspect that this is not true for most girls.
Do try and ensure that their hair is as short as possible when they first come in for their transplant, as there will be less to loose.
A PEG or Percutaneous Endoscopic Gastrostomy is something that most parents should at least consider for their child. This is a small medical procedure that in effect puts a semi permanent tube straight in to the child's stomach. All 'oral' medicines and feeds can go through the PEG rather than having to be swallowed. It is particularly useful if your child has had bad experiences of nasal gastric tubes or struggles to swallow the medicines they are on now. Also it is likely that at some point after the chemotherapy your child will have a very sore mouth and throat. For our eldest son it was the thought of an NG tube that really freaked him out, and with the 'smoothness' of how the PEG has worked we have had no hesitation in getting one fitted for our second son going through transplant.
The downsides are that the child will need a small operation and over night stay to have the tube fitted. Because the stomach may be 'pumped up' to allow the operation and this can be uncomfortable. Plus it does mean an additional operation, and this also has risks.
But we do suggest that you seriously think about it.
You can expect a BMT to take between 6 weeks and up to 3 months (the later being the time that our eldest son was in hospital). This is a long time for active children and whilst there will be times when they don't want to do anything, there will also be very long Sunday afternoons.
So try and plan ahead and think through activities that you can do with your child. For many parents and guardians you will never have so much quality time with your child as this - use it. For our boys we invested in various craft type activities (model planes for the eldest, drawing and crafts for the second). We even developed 'A 101 things to do with a sick bowl'. Check out if there is a games machine (PS2) in their room and computer access.
Encourage friends and school mates to write in and possibly even send small gifts. The arrival of the post is one of the highlights of the day.
Whilst all of your attention will be rightly on your child it is important that you ensure that you stay in the best possible health. Ensure that when you are on the ward that you drink and eat well. Ensure your child understands the need for this. Most supermarkets do an excellent range of micro wave ready meals when you are tired of the hospital canteen (about day 3).
And if your child's transplant is over winter then consider having a flu jab.
If you are unwell enough you will not be allowed on the ward.
Every parents or guardians situation will be different, but for us living about 100 miles from the hospital we found that 5 days on, 5 days off is about right. Some families on the ward alternated daily, and some had both carers there full time. Discuss it with your partner but be prepared to be flexible.
We would recommend that if the transplant is scheduled to go over the festive period that you check exactly what consultant, dietician, immunology etc. cover will be available. We had a distinct impression that significant parts of the hospital 'shut down' for 10 days and access to key personnel was not easy over this time. Talk this through with your medical team.
There will almost certainly be 'swings and roundabouts' as you go through transplant…… And there will be times when you have great concerns over how well your child is doing. Ask the medical team to be brutally honest with you and to share detail. We have always found them to be most obliging and they do find the time to sit down and listen to your concerns and answer you fully.