They started transplanting Isita’s stem cells back into her yesterday afternoon. The process was simple but left no room for error. Once the bag of cells was defrosted, a pair of nurses had 20-minutes to get them into Isita’s body, which they did. Organisation and precision are vital to getting this right as there is no second chance. The substance used for preserving the cells in the freezing process smelt strongly of sweetcorn. Soon it was as if someone was cooking chowder right there in our little room. It is fairly toxic. Marta and I have been told to drink lots of water and to wash our hair the evening after we have left the hospital. Isita is being given fluids to wash out the toxicity, but still felt quite sick during the procedure, which will be repeated today.
We won’t know for about a fortnight – so maybe Wednesday 2 August – whether the cells have engrafted successfully. I have wondered why they can put the cells back into her body while the worst ravages of the chemo are still ahead. Why doesn’t the chemo kill the transplanted stem cells too? The answer is that the drugs are no longer free in her body. They have been taken up by the cells and are now doing their work. The new cells will not be affected as they start to regrow her marrow and white blood cells.
Along with keeping Isita free of infection, achieving a successful engraftment is a big part of getting through this treatment. But for the next fortnight we will do more than play a waiting game. We will be keeping Isita happy, motivated and strong. This is a good job for a parent; Marta and I are more than up for it. We desperately miss all the ‘aunties’ and ‘uncles’ whose company and love lifted Isita’s spirits (and ours) over the past few months, but the isolation policy is more and more necessary every day from now on.
Aside from our family and friends, it is humbling to enumerate the extraordinary resources, goodwill and generosity which are on hand to help us at GOSH. At the simplest level, every day Ruby comes in and scrupulously cleans Isita’s room from wall to wall. Each room has its own mop. She is always asking ‘how’s my princess?’ We appreciate her efforts and her cheerfulness equally. Her work, as much as that of Vicky the nurse practitioner and Mariam the ward sister who oversaw the transplant, is a mark of the attention to detail which is crucial to getting this treatment right.
They are all part of a great crew of cleaners, housekeepers, volunteers, play specialists, psychologists, student nurses, healthcare assistants, staff nurses, nurse practitioners, specialist nurses, ward sisters, dieticians, microbiologists, radiologists, anaesthetists, surgeons, registrars and consultants not just in the oncology team and wards, but the renal team and the gastro team whom we rely on for their dedication, diligence, judgement and care. As I run through the list, there are about 80 members of staff at GOSH who have played a role, more than half of whom we see extremely regularly.
These days – not just because of what we are going through but also because of what is being reported about other cases – it seems particularly important to state that whether you look at the individuals, the teams, or the whole institution, GOSH is a supremely caring place. It is awe-inspiring how many people spend their working days and nights caring for our daughter and all the other children, and how well they do it.
When NHS is good it’s not only that, it’s second to none and am stating this literally. Would you allow me to post this on Facebook? Or post it to a journalist friend? I believe GOSH should be advertised more and applauded as widely as possible. As well as every single person working there.
Saw Mohamed two days ago and first thing he asked was: how is the little girl? And I answered that we are all sitting tight. And of course thinking of you…
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Excellent report.Apart from willing the treatment forward for Isita,your description of all those involved in her care brought tears to my eyes. They are a stunning bunch and I for one am proud to be associated with them.
So lovely to chat to you last night. Fun evening.
As parents I give you 5 Gold Stars!!!
lol
Henrietta
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It says so much of you as a family to thank the staff at Gosh in such difficult times. It’s reassuring they can comfort you. All my love x
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