Tuesday 8th September

Busy day today with all things health related. Treatment went ahead as usual, as did the Tuesday research questionnaire discussion.  The treatment should finish in just over a week so thoughts of follow-up are starting to form.  They are keen to get as much info as possible and it sounds like they are somewhat used to the home hospitals not always remembering to send check up information to the PSI, in the following months and years, and also the varying amount and quality of it.  They like to do their own check ups if it's possible.  I can see why too.  It must be a real challenge trying to draw out common themes of side effects when everyone has a different cancer, in a different location, in a different aged child, at a different stage/grouping and on different treatment protocols.

Toby has now had a nose bleed every day for the last week and the doctor at PSI was keen I discuss this at the Kinderspital at the appointment later in the morning (11.30).  I was also informed of an appointment  at the Universitätspital, at the eye clinic at 1 pm.  Great they were on the same day and close together.  Luck or good planning?

Toby's bloods are already low, just a week into this chemo cycle.  His Neutrophils were 1.03 and if 0.9 or less the chemo would be witheld.  The doctor suggested the oral daily cyclophosphamide is continued, but the Vinorelbine was reduced to a 60% dose. They managed to completely distract him from the 'wire' and yet again he's offered a sweet from a tin that appears miraculously at the appropriate time.  The platelets and haemoglobin were good though, so no real concern on the nosebleeds, especially as they are very quick and mild.  He's not losing more than a few drops really each time.  They also checked with ENT about the nosebleeds but really the recommendation is just to continue with the cream, but put up the nose now as well as on his eye area.  Think that'll have to be when he's asleep.  Keeping him still enough for eye drops is a challenge and one that we regularly fall out over! 

On a positive note, he seems very comfortable at the Kinderspital now, knowing his way round, keen to ring the bell when we drop his blood samples off, happy with being examined, loving the playroom and happy to go out to play there while the doctor and I finish any conversations.  Everyone comments on how active he is, and he's starting to get people admiring that beautiful blonde hair that's well on its way back, thank goodness.

The appointment at the eye clinic (Augen Klinik) was much better than the first time!  Toby had a couple of photos taken, and a sweet appears as a well done again.  (Just leaves me worrying about his teeth rotting...after all I haven't got enough to worry about!). They looked at the optic nerve, and the cornea as best they could, given his light sensitivity.  Both appeared normal, which was a bit of a relief.  Obviously it's the long term where things can also develop, but it's still good to know the cornea is smooth now in the throws of the treatment and not damaged due to him scratching it too much or the radiation itself.  They wanted an appointment for the end of Sept or early Oct, but given we'll be back in England, they think it's something Q.C can follow up on.  I think we have an appt in with the othoptic team then anyway actually!

Got home and opened up the new supply of chemo to give today's dose.  The labelling isn't cyclophosphamide so I rang the hospital to tell them.  Given their mistake the first week I didn't want to take any chances!  They assure me that Endoxon is the name of the medicine and that cyclophosphamide is the active ingredient.  Better to check and be on the safe side though.  Mind you, might just go and Google it.  I know, I'm a nightmare!