All pumped up

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)

Ondansetron- antiemetic

Iv fluid drip- hyper hydration. Meaning a great amount of fluids per hour- lots of peeing!

Cyclo iv

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 chips

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

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5 thoughts on “All pumped up

  1. Hi All,

    I had this dream last night that I was seriously ill in some unknown way and my mum was with me. The doctors had given me a tube to put down my throat myself, but i couldn’t bring myself to do it, so i ended up getting rushed to hospital. There was some time pressure, which meant when i got there it was all really frightening. I woke up feeling really afraid and I just thought of how brave you are all being (not because hospitals are how this dream one was) but because it really made me feel just for a minute what it must be like to be subject to a whole other structure not of your choosing, even if it is one that is helping you. All of the apparatus that is foreign to you and the chemicals and medicines that make you feel strange. Forgive me, because I don’t know really what it’s like, i’ve not had much experience of the reality of going through any kind of treatment in hospital, certainly nothing over an extended period.

    I think of you all a lot. Slowly, slowly I know there will be light at the end of the tunnel. You’re wonderful, Kathi for just being yourself in the way you are. It’s really a special thing to be able to read here what you’re experiencing. Thanks.

    Much, much love

    Laura xxx

  2. ok so I withstand all the chemo n treatment bits as had half of them myself – I smile at your description of ‘hospital time’ (people used to ask me “so what do you do all day?” – fucking get through the regime!!) – but Kathi the image of the Disney incantation has tears rolling down my cheeks!!!! What an incredibly heart rending yet sensitized pictured. Your wonderful Vega ‘knows’ and holds so much and the loss is so deep. I grieve for and with you. You write with such ‘realness’ and it is profoundly moving. Thank you for sharing with me, with us all here so that we may walk with you. I hope as time goes on you will know more and more how much you are all loved and held in our hearts and that your little flower will ‘gleam’ anew again, shining her light as always on others. Ooooooooodles of love to you Sue xxxxxxxxx

  3. I am so, so moved by Vega’s ability to connect with her own reality and finding something that really speaks to her. That she can find some healing in all this. She is amazing, what a trooper. How we underestimate children and she has just reminded me of their own knowledge and wisdom. Tears streaming at how powerful that incantation and her connection with it is. I agree with Sue above, in some way we can walk with you through this. Thinking of you all, much love and compassion xxxxxx (Rosa and Ivy’s Mum)

  4. Honey – I now will only read your blog with tissues to hand!! What an emotional thing to listen to at night – bless her!

    I agree with everyone else, you write about all this so amazingly and I am always in awe of your coping ability.

    lots and lots of love and hugs.x.x.x.x.x.x.x.x

  5. Dear Kathi,
    thank you for sharing, i do not know where you get this clear mind to find these clear words. To read you is easy and painful, that’s why i can feel your pain when i read your blog and i cry when i read this words from Rapunzel that, understandable, Vega likes to hear over and over again…. we are here, not so far… we are also walking with you and we carry you
    in our minds and hearts,
    love from us all

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