Today was our hospital day at the Marsden. The Royal Marsden Hospital in Sutton is where we meet our consultant and where Vega has all the big procedures and lengthy chemos. We also receive shared care with Kings College Hospital and through a team of pediatric district nurses who visit us at home. But today was a Marsden day. Hospital time works different to the rest of the world time. Everything is slower, takes longer and never seems to end. Even the simplest of things becomes an undertaking that could last hours.
Today Vega started part two of her augmented BFM consolidation, sorry if this sounds like googlyhubbs, I shall put a link to her protocol so it all makes more sense. In essence there are always trials going on to improve the treatment for childhood leukaemias. There is currently no open trial so all children diagnosed now being treated with what was found to be the most effective course of treatment at the closure of the last trial. Vega’s protocol is called Regime C high risk of the UKALL 2003 trial. If you are interested then you will find plenty of information as well as all the treatment regimes and flowcharts.
Vega’s regime is a 118 week long course of chemotherapy- here is the link for her flowcharts, just to give you an idea of the intensity of the whole darn thing. People ask me every day “Is chemo finished now? Has she had any today? She is in remission, right?”
Achieving the remission part is relatively easy and usually achieved within the first 28 days. Remaining in remission is the tricky bit and the idea of the treatment is to wipe out the white blood cells over and over again to give the body a chance to “reboot” itself over and over again, hoping that eventually it will reboot with only healthy white cells and not with any cancer cells.
So if you look at the flowcharts, you will find the weeks at the bottom and all the various chemotherapy drugs at the top, little arrows indicating when they are being administered. We are at week 11 and today we had the pleasure of cyclophosphamide, a variation of world war 2 mustard gas, and cytarabine, also known as Ara c. Cyclo is nasty to your bladder so although the actuaI iv administration only takes 30min they hook the children up to a drip with iv fluids for 4hours. That’s 4hours in hospital time, meaning it feels more like ten! Ara c has quickly become one of our favourites over the last week as it is a real blood killer and is the reason why Vega has spent most of the easterbreak hooked up to a transfusion drip. It just totally wipes everything out, good or bad, red or white or yellow, it is not picky.
All these drugs are taking about 7-10 days to take real effect so watch this space come next week! The Ara c is being administered for four consecutive days, for two weeks, which will be done by the district nurses for the rest of this week and then again next week after I picked up our stash of poison from the Marsden on Monday.
Anyway, not to bore you all to chemo death, I thought it would be shockingly interesting what Vega had pumped into her today-
Antibiotic x2 this morning (one she takes every week for two consecutive days as a prophylactic, the other is a course she is finishing due to her hospital stay last week)
Iv fluid drip- hyper hydration. Meaning a great amount of fluids per hour- lots of peeing!
Cytarabine push (means directly inserted into her line)
Antibiotic x2 this evening
Mercaptopurine– another chemotherapy drug that I give her orally at home in the evening
Surely she is pumped up to the brim? Which also must be the reason why this is what she ate today-
Half a small pot of yoghurt
Two kernels of sweetcorn
Bite of broccoli
Bite of banana
Bite of croissant
Despite all this Vega was in quite a jolly mood today and took it all like a trooper once again. We even had a very unfortunate accident in the playroom at the hospital and ripped her wiggly needle out of her port- ouch!
This evening she was very tired, didn’t want to eat and asked to lie on the sofa with a blanket, which is a sure sign that all the pumping up with poison business is taking its toll. She was also refusing to sleep in her own bed again, so here I am writing wedged between Alys and Vega while Ray will join Lyra in the bunk. Whenever Vega sleeps with me in the big bed she requests to listen to the healing incantation from the most recent Disney rapunzel movie on repeat until she falls asleep. It is such tragic irony that she wants to listen to this, not only because the film is pretty much all about hair, but also because of the incantation which I will leave you to ponder over tonight. Vega so absolutely knows what’s going on.
Flower, gleam and glow
Let your power shine
Make the clock reverse
Bring back what once was mine
Heal what has been hurt
Change the fates’ design
Save what has been lost
Bring back what once was mine
What once was mine