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Five weeks in...

Posted by
27 Jun 2017

First time chemo at home

Slightly over five weeks actually, its 40 days since boy was diagnosed with ALL.

We've spent most of that time in the hospital, we in chairs and beds and boy in the sling, holding tightly to an Ikea spoon every waking moment. Now, finally, home and moving on to the scary Regimen C.

Today, boy started the oral Mercaptopurine - the first time that I've given boy his chemotherapy. It didn't seem so bad when it was the nurses pushing these paradoxically toxic medications into him, but tonight it was my hand on the syringe, my thumb pushing the plunger, me doing the damage that's meant to make him better.

Not for the first time - and not for the last time - I had a little moment.




Thank you so much for finding the time to write a blog which with everything that your family are going through at the moment can't be easy.

I can't begin to imagine what it's like to have to inject your son/daughter with chemotherapy knowing that you essentially have to make them sicker before they can get better.

 I'm not suprised in the slightest that you had a moment as a result - I don't think you'd have been human if you hadn't - and I want you to know that you are certainly not alone and help and support is out there for you should you feel you need it.

As a starting point your son's treatment team are there to support you in any way that they can so if you ever have any concerns or worries it's always good to try and contact your allocated clinical nurse specialist as that's what they're there for.

We're also here to listen to you and help you access any additional info or support that you might need. You can either give them a call on 0808 2080 888 or email them at support@bloodwise.org.uk

We also have a number of blogs written by parents who have been where you are which may be of interest to you and I'd really recommend Melody Berthoud's blogs as a starting point if this is something that you're interested in. Here's a link to her profile: https://bloodwise.org.uk/people/melody-berthoud

Do feel free to leave a comment or ask questions on any blogs that you see as the patient community was set up for you to engage with and support one another.

Last and by no means least we have booklets and general info on childhood blood cancer which might be useful to you in the first instance to help you get your head round everything. If you get in touch with the patient experiences team they'll be able to send some out to you :)

Wishing you all the best going forwards. Do stay in touch and remember we're with you every step of the way!


Ed, I can only wish you and your family well, and that the treatment your boy is getting will bring him back to good health. It is tough being a parent/grandparent, and I think doing what you are doing has got to be one of the toughest things you will ever have to do.


Hi Ed,

I remember that feeling clearly even though we are 18 months into treatment.  My son was diagnosed in January 2016 at the age of 10 and we end treatment April 2019.

We were so desperate to get home but did not expect to come home with a sharps box, blue gloves and an assortment of medications including chemotherapy.  It was the start of a whole new life with ALL.  I made spreadsheets, organised and sorted as I had to get this right, literally for my son's life!  

One of the things I always remember was the insistence that we wear protective gloves when handling his chemotherapy.  It didn't feel right.  Something that could be so dangerous to me I was giving it to my son.

Eighteen months on and we're used to it.  We don't like it but that's how it is!  We administer all chemotherapy now as an outpatient.  My son is back at school full time, he plays football twice a week and today is completing his Bikeability course.  Life does go on!

I just wanted to reach out.  Writing helped me immensely, I think it will you too.  If it helps, here is a link to my blogs:  https://mrsbrown.me

Take care and love and best wishes to your family.







Ed, thanks so much for taking the time to write this moving blog. Wow, you have been on quite a whirlwind 40 day journey. Boy certainly seems to have received brilliant hospital care, but what about you the carers whose lives has seemed to have been put on hold with many sleepless, uncomfortable hours at the hospital. I cannot imagine what it would be like having to press the plunger, I think you did brilliantly. Please try to look after yourselves as well as you look after Boy......what's Boy's name by the way, I love his photo?


My son Andrew was 3 at diagnosis for ALL in 2012. Your blog is so very moving. There are endless moments and lows but also happy memories to come I promise. We switched to Reg C too, none of it is nice so we thought why not sock it to it a little bit more. We took things a day at a time, sometimes minute by minute. Then one day you will be 15 months in remission and have moments of forgetting. This is a life altering journey but one you will be supported with every step of the way. Well done for discovering Bloodwise! Feel free to follow me @webeatleukaemia or contact me directly. 

Aileen Lamb

We are all rooting for your wee one Ed. 


Hi Ed, I remember being so nervous about leaving the hospital, with the weight of responsibility now firmly on our shoulders, but at the same time just wanting to be home.  It's scary, but it does get easier and things that seemed completely terrifying at the beginning of our journey (nearly 2 years ago), are now just part of our day.  Stay strong, you can do this.  My son was diagnosed in July 2015, you can follow us on www.lifeloveandleukaemia.blogspot.co.uk if it will help.  Thinking of you and boy x

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