How can I help DS aged 6 having chemo come to terms with the regular blood tests?

[Taranta]

Hello,

My DS aged 6 was recently diagnosed with cancer, and his treatment involves v regular blood tests and accessing of his port (Hickman line type) for chemo meds.

He’s on the pathway for ADHD diagnosis which for him comes with some sensory issues, controlling what happens to him, and intrusive thoughts particularly around visual stuff, like needles. He’s also v v stubborn.
Every blood test he has is a battle, with tears and outright refusal. Even in his home environment it can take 30 mins just to allow the nurse to look at his port. It’s unbelievably stressful for him (and me).

I’ve just had another home session end with no bloods taken and now I’m going to be taking him on to hospital for it.

Can anyone offer any advice on handling it? Or perhaps you have had this situation and it’s gradually got better?

I’m so sorry to hear this.
is it a kids hospital doing them?
They will have a play therapist team who can get involved - they are a fantastic resource and can help distract etc.
alternatively if it’s something that he needs to get used too, I have seen the tough love, no cajoling, straight from the off it’s a hold down and over and done in 2 minutes technique work very well.

you know your little one best but have a chat with the hospital and see what you think!

Definitely as above ask if they have a play specialist who can help. Traumatic procedures which have to be done often just get worse and worse without correct intervention- paeds nurse. 6 is a difficult age but he does sound like he has a lot going on. Could you make some visuals for him to give him some control so he could put the pictures in order of when he wants the nurse to do things. Have a safe word etc but absolutely get the hospital and team on board to help him. Such a difficult time for you all, wishing you all the best and hope things improve for him and he’s cancer free soon

I’m so sorry to hear this, it sounds so stressful.

I was in hospital at lot at around that age and has zillions of injections and blood tests. I’m NT, so don’t have quite the same challenges. But the big thing that helped me was some sort of sense of control.

We always made sure that the doctor/nurse and I would say ‘1,2,3’ and the needle would go in on 3. It’s a tiny thing but it helped me feel more involved.

If nothing is working, I wonder if it’s an option to have a port or cannula put in? I’m not a medic, just thinking about what my mum had when she had trouble with her veins during cancer treatment.

I'm sorry about your son's diagnosis. My son had lots of intervention starting from 3 and for the next few years - it was very hard, lots of tears and screaming - varying in intensity. It was very stressful. The numbing cream /magic spray didn't cut it. Play therapists just made him more mistrustful - he would swipe away any ipads or where's wally books.

He hated anyone accessing his port or even touching the access on the port... also using alcohol swabs on anything. Also swallowing medication/ wearing any kind of mask was horrendous.

We just used to have him sit on our lap & hold him tight.

Some kids just find it really distressing & it's just a matter of getting through it, rather than having them be happy about it. At 6 I would focus more on bribery & rewards. Take care of yourself.

I'm really sorry to hear your son has to go through this. I had to have chemotherapy and can't imagine what this must be like for children. Can you ask them to check the port is fitted correctly i.e. it's not actual pain causing his distress. Also try McMillan who have a lot of resources.

Sorry to hear about your son’s diagnosis. Chemo is shit as an adult so I can’t imagine what it is like for a 6yo. I think you need to ask the professionals for help, they will be used to situations like this. Good luck.

could you try some hypnosis on him? Sorry if that’s a silly idea but my mum used to hypnotise my nephew somehow when he was 7 and having painful procedures done due to having cancer.

Thank you so much for your v helpful and kind advice. I'm sorry it's taken a me a while to get back to reply, been at the hospital!

There are play specialists available, but so far this haven't gone well. He was talked through the process of having the Hickman line inserted using a duck as a visual (!) but for him that was way worse. Anything visual he struggles to get out of his mind, so he needs a 'describing with words' approach. He's 6 with the intellectual capacity of an 8 year old, but the emotional capacity of a 5 year old, so it's a tricky balance. He's also developed a distrust of doctors after one doctor in hospital told him she wanted to just look at his hand, and then promptly stuck a needle in him for a cannula. That was right at the beginning and it's stayed with him :-(

@BlackSwan the situation sounds very similar to yours, he hates the texture of cream and coldness of the spray, won't let anyone else touch the port etc. I really feel for him. I have to tough it out and tell him he has no option but it can take an hour to get anywhere, with tears and upset, and pleading with me not to let them do it, so traumatic!

I just wish I could swap places with him. :-(

I don't know if it makes you feel any better but my much older NT child also hates the line. They are able to rationalize to some extent that it's better than a load of needles, but still hates it. I think it becomes the focal point for the dislike of all that treatment.

Have you tried one of the Molly Olly lions? It's a soft toy lion with a Hickman line in that comes with story books and different colour wigs! We used it to explain to my youngest what was going on.

Also make sure everyone is consistent in their approach to it eg the name they use for the line, that they ask before they look at it etc. My DC hates people calling it a wiggly for example. It also helps if your dc becomes the expert in their line e.g which lumen works better, which is for chemo or blood, and that health staff ask for DCs opinion.
Sorry that you are going through all this it is properly crap.

Hi, so very sorry to hear what you are going through.

I work in the labs and we and many others have set up a scheme whereby children having regular blood tests can visit the lab and see where their blood goes, look down a microscope etc. We have specially sized lab coats and children are made to feel important and in charge of the process. Might this help?

If you are interested I am happy to put you in contact with your local lab.

I've been there, with a 6 year old diagnosed with ALL who is also autistic. I'm so sorry that you too are going through this. We had days when it took two hours to access his port. Other times he ran away and hid. But it did get better.

We had the play specialist come and spend time with DS independent of his being accessed, and do stuff with him that was totally unrelated. Then she started being there when he was accessed.

Another thing we did was get DS to write out his own rules of access plan. For instance, I always had to rip the sticker off fast (the one with the numbing cream) and then it was 123 needle in.

It got better. By the time he was 7/8 he no longer needed numbing cream, or me - he used to have his blood tests done at school.

But I really, really feel for you. I know how hellish it is.

(My DS had no interest in chemo duck either.)

I've also been there with my son who has Downs. Nightmare. So many tears. We saw a psychologist who really helped him. Can you ask to see one?

Does he have a port or a Hickman (they are different).

A port requires a gripper needle to be inserted to take blood / admin drugs and a hickman is always there and can be accessed without a needle?

If he has a port and needles are a big trigger changing the access device type might be worth considering.

However before you get there it is worth accessing the play therapy +/- psychology teams. Sometimes having a very clear routine where he plays a role/ controls the situation can help e.g I've worked with kids who are allowed 20 seconds to panic before you cannulate them (this was instituted by the psychologists and amazingly it works - you set a timer, they freak out for 20 seconds and then give you their hand....)

Any plan should be written down and all future clinicians briefed. We are all very respectful of such documents (although the odd cock up does happen and when it does everyone always feels really bad about the impact on the kid).

Building Trust is so important - it's better to not break it in the first place but it sounds like that ship has sailed for your son so it should be all about getting that trust back from him.

I recently read about a virtual reality app called OVRcome that provides therapy for needle-phobia. It is designed for adults so I'm not sure if it will work, but it might. You work through at your own pace at home and learn to control your emotions.

What a fantastic idea!!

@Jofergo thanks for your v helpful message.

Well, in terms of what he has, I was told it was a Hickman line...? It runs from his jugular vein past his heart and ends in a what they called a port, a chamber beneath the skin that he has a wiggly fixed to. It seems to have a short needle that goes into the skin over the chamber, a little dot on the skin marks it. He has numbing cream over the dot for an hour and then they plug the wiggly in.

The play therapy hasn't been so successful. He doesn't want to see any visual representation of what they are planning to do and it upsets him more, and bats off any toys or anything which are 'for babies' in his words. We are due to see the psychotherapist but there's a waiting list. He's been prioritised because of his reaction and we have a call this week.

Spent the day at the Marsden today, it took an hour to get the wiggly in, and then another half hour for him to accept the chemo, and the wiggly coming out. Once both those things were done he was fine about it, but furious at the plaster coming off that held the wiggly in place, as he said it was so so painful. We've tried the magic water to take them off but he hates the wet sensation. What works is for him to take it off himself, but it takes a LONG time to get to the point where he is prepared to do it. We are going to try without needing the plaster next time, which will work if he's prepared to crack on with it, but not if he's going to take a long time to allow anything to happen.

I'm going to write down a plan and see if I can get him to help me work out a plan that he is comfortable with. Then that can go on his file, I hope. He's treated under the Marsden but with two associated hospitals for some things, so there's been a bit of miscommunication with some things so far, which of course happens, but hasn't been that helpful.

I do appreciate all your comments and suggestions. I feel mentally exhausted at the end of a day like today, keeping it together and getting it all done. When I come home I just want to lie in a dark room! X