T29, T30, T31, T32. Home Sweet Home.

After what seems like the longest time one minute, and an amazingly brief time the next, we are now at home. It is an enormous relief to be here. Of course, getting here was the usual Woolley family mini-epic.

At one point I thought Son was going to suffer some mental trauma induced by the scale of the clean-up operation at home whilst I was doing the last shift at Fox Ward. In typical fashion, she set herself very high standards and then met them all, with the result that the house was not only as hygenic as it has ever been by a comfortable margin, but Saffy's room was a pink paradise covered in (left-over Xmas) presents when she arrived. The look on her little face was priceless. Son will freely admit that she could not have got close to getting everything done without the drive, determination and elbow grease of Margaret, her mum, who came down for 3 days from Worcestershire, just to help out.

Saffy is now spending her time going and finding all her favourite things at home and in between time just grinning. She seems really well 'in herself', as they say. Going home seems to have given her another boost, as did the red blood cell transfusion and the white-blood-cell-boosting G-CSF infusion that she had just before leaving hospital. Both counts were a little on the low side and the doctors wanted to give her body a little extra help to cope with the outside world. Or the limited part of it that she will see from inside the house.

We have set up a M*A*S*H*-style field hospital in Palmers Green with syringes, medecines and other paraphernalia around the house. So far, managing the medications has been fine - Son and I supervise each other to make sure we're putting everything we were told into practice. Keeping the house hygenic is a challenge - Reuben and Saffy managed to wee on or near each other and on the floor within about 1 1/2 hours of getting home.

We have a way to go yet - it's only been 48 hours since we got her home - so, we do not want to take anything for granted, but while the hospital stage that we have just completed is still fresh in our minds, we wanted to note a few things that felt like they had worked for us for anyone reading this in the future preparing for their own child's BMT. This all comes with a health warning because neither we nor anybody else knows anything for certain, but for what it's worth, here goes:

Things Outside Our Control:

We had a good match - even though it was an unrelated donor (10 /10 tissue match, later further refined to 11 /12).

Our donor was physically large, meaning that we could get a lot of marrow - the large volume may have had something to do with how quickly Saffy started showing neutrophils post-transplant.

We had a male donor. Male to female transplants are the most desirable. Frankly, we can't remember what the reason is for this, but the outcome tends to be less severe GvHD.

The support we receive from our friends, family and employers is as much as anyone could wish. Seeing other families cope with less has brought that home. Because of this we have been able to devote ourselves to Saffy and Reuben during this time. If we get through this whole process relatively unscathed, this will be part of the reason why.

The team at GOSH. They are absolutely brilliant. Just brilliant.

Things Within Our Control:

All of the things above (plus luck) probably account for over 90% of success in BMTs. Through what we did we tried to squeeze in another few percent difference. What we did was:

Set very high standards of hygiene. We took the cleanliness rules as gospel and wherever we were told 'do this 3 or 4 times a day' we tried to make sure we did it 4 times, not 3. It is quite possible that either Sonja, Erika or I will have obsessive-compulsive disorder in later life.

Think like a germ or 'If I were a rotovirus, where would I hide'. When you're not doing anything else, look around and find spots like door handles, the tops of high shelves etc and get happy with the alcohol wipes.

Find the nurses who have been on the ward the longest and quiz them. Find out everything you can. Nurses with a strict demeanour are the best for this. We loved the strict nurses, because they weren't afraid of hurting feelings, they just said what they thought was best - for example good ways of separating gloves used for different functions to different parts of the room. Sounds anal. It is. But these nurses really knew their stuff and it makes really good sense.

Talk to everyone. The housekeeper can tell you really useful things like where it's safe to get bread in the middle of the night when the frozen, individually-wrapped portions have run out in the special BMT kitchen and you have a girl suddenly demanding toast after 36 hours. The cleaners are sometimes the same ones who prepare rooms for green precautions - they know more about killing germs in your room than you do and they're full of tips.

Be strict with each other. The 3 carers helped by policing each other - it is really easy to forget instructions when you hear so many, so it helped that we reminded each other.

Take short shifts if you can - 2 nights was our ideal when possible. There is a lot to do, it is stressful in different ways and the nights are always broken, so being able to rotate carers regularly is a good idea.

Write everything down. Take notes when you are learning about things. Also, write everything down during the day. You won't be able to keep a note of when she drank what, which cream you applied when, how many times you did the oral care routine and everything else, all in your head.

As well as all of this, try to make the experience as much fun for your child as possible. This might sound strange, but when you're a kid, there can be fun in anything. Saffy enjoyed watching her old favourite videos as much as she wanted (I can kill at the mere sound of the Balamory theme tune now), getting lots of new sticker books and even playing the 'Who can sellotape up most hair from the pillowcase' - a game that you can only play under very few circumstances! Most of all, stay happy yourself so you create a positive atmosphere.

None of this is rocket science. More an extreme form of common sense. Don't feel too daunted - we learned everything from friends with previous experience, but mainly from the staff at the hospital who are used to guiding families through this, and who could, if necessary, take your child from beginning to end of the process without you.

Anyway, enough top tips. We'll let you know how well things are going at home soon.

All the best from a very happy Team Saff.

Martin

PS. I also matched Son's 'Raspberry Nipple' cock-up, when we were getting the last few thngs together before leaving. As I tried to reach a particularly elusive get well card from a high shelf, I over -reached, but managed to grab it. As I turned to leave the room I was almost knocked down by the charge of nurses and doctors arriving within seconds from other patients' rooms. Obviously in over-reaching I had leant on the crash alarm placed out of the way high on the wall and they were arriving to save somebody's life. I was left in no doubt what a medical faux pas I'd made as I walked past that same team on our way out....