Kip Update 27th June

With Rabbit, his constant companion.

So last Tuesday was the clinic review and readmission with suspected fungal infection. We saw lumps on ultrasound and CT scans, which the team believe are lesions caused by infection (as opposed to malignant tumours).

Further scans revealed lesions in his brain, adding to ones in the kidneys, liver, lungs and spleen.

Analysis of bloods, his bone marrow, swabs from all over his body, spinal fluid and everything else all pointed away from fungus – and happily away from leukaemia – but towards a viral infection.

The only virus that’s been found on or in him for ages is the Epstein-Barr Virus, or EBV. It’s one of the most common viruses affecting humans and when the average person gets it sufficiently badly they get glandular fever.

In Kip it’s slightly different.

Kip now has a profliferation of B-Cells carrying a certain protein, which are prompted to reproduce by the virus. These B-Cells are gathering in clumps around his body, causing the shadows/lesions we’ve seen on the scans.

The protein on these B-Cells (CD20 if you’re interested!) makes them stick out a bit and, fortunately, there is a drug which specifically targets B-Cells with CD20 proteins, called Rituximab. Kip was started on this on Friday, along with dexamethasone steroids to wipe out the nasties.

We were hoping to see some improvement over the weekend but this morning Kip had lost the ability to stand or even sit up unaided. Sarah was worried, and I was terrified. I drove into town in tears, ostensibly for changeover but mostly expecting really bad news.

I didn’t get much response from him when I arrived and as we sat together we were braced for the worst. I took Kip down to radiology for another CT scan of his brain, and we waited for the results to come in.

To our immense relief, the scan showed no progression of the lesions in his brain, and no change to the swelling. Nothing has got better but, most vitally, nothing has got any worse.

We discussed the progress with one of the consultants and were told to expect good days and bad days that look like backward steps. Being “prepared” for it doesn’t make it any easier I can tell you!

We don’t know how things are going to pan out yet. Kip is really quite unwell, he’s not himself and clearly unhappy. He sleeps nearly all the time, which we suppose is good in that he’s not distressed. It’s just heartbreaking to see our beautiful boy knocked flat by such a common little virus.

We’ve also had to let Millie know what’s going on; sharing all of this to an 8 year old about a 5 year old is something that just shouldn’t happen.

Needless to say we’ll keep you all posted.


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