Adam’s CD34 count went up to 13 this morning so they decided to press on and try for a stem cell harvest. He went into surgery late morning and came out with a new line running up through his groin area and into his femoral vein. Adam’s first action upon waking from the general anesthetic was to whip down his pyjama shorts and assess the damage. After a few moments consideration he decided it wasn’t too bad, his leg just ached a little.
A blood count of 13 is still very low and the most probable outcome will be that they get insufficient cells. The worst possible outcome is that they get too many to justify (the cost of) another stem cell harvest but not comfortably enough for two transplant procedures plus some extra just in case we need them in the future. The cells are stored for something like five years and we know (from other peoples’ experiences) that having extra stored away can never be a bad thing. So it’s possible we may need to explore how we can fund an extra stem cell collection and storage. I don’t ever want to get to the stage when one day we look back and wish we had taken more stem cells when we had the chance. The other problem is that because Adam has mobilised without the support of Plerixafor I’m guessing that it’s now less likely they would agree to fund that either, even though it all but guarantees a much better harvest. Again my view is that if all it comes down to is money, however many thousands of pounds it costs to pay for the drug and the procedure and the patient care and the hospital stays, then we should opt for the most effective way possible.
The machine that collects the stem cells is a rather cumbersome looking beast. Doesn’t really look as though it belongs in a modern hospital. However, we’re all old enough to know that looks can be deceiving and what it does underneath the hood is really rather cool.
Blood is drawn out of one of Adam’s lines and enters a centrifuge where is it spun and separated into different components. The bone marrow cells are drawn off into a bag and the remainder of the blood is warmed and returned to Adam’s body using the second line. (Clearly I have oversimplified somewhat but you get the idea). Children often get a strange tingling sensation whilst the machine is operating, caused by the anticoagulant that is added to the blood to stop it from clotting inside the machine. When it reenters the body it lowers the level of calcium by bonding with it. Adam didn’t seem to exhibit this side-effect but we gave him some milk to drink just in case.
The most notable thing about the whole process is just how boring it is. Adam had to lie on the bed generally motionless for several hours whilst three times the volume of his blood was extracted, filtered and returned three times over.
Apart from a shuffle every now and then to get into a more comfortable position the only other noteworthy fact is that it was me on duty when Adam decided he wanted the toilet. Now I don’t know if there is a recommended approach to arranging a child so that they can have a poo in a cardboard tray on top of the bed. Or whether there are any instructions on how best to clean their bottom thereafter, whilst maintaining white bedsheets and retaining all doings in said cardboard tray. All I do know is it’s a skill that I haven’t quite mastered yet. Still we got it sorted out without the need for clean bed linen, which hasn’t always been the case. A quick trip to the sluice, thorough washing of the hands and an apology for the smell to the parents and two sets of grandparents sitting in the bay opposite, and we were back to boring again.
Tomorrow morning we will redo the stem cell harvest. Once that is complete and Adam’s vas-cath has been taken out we’ll be free to go home. All that will remain is to find out how many stem cells we got and how close we are to the target of six million. Not quite enough is my guess, but too many to call it a complete failure. I will let you know...
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