Terminal diagnosis support group

[ScaredOncologyMum]

First thanks to @Mumsnet for setting up
the children’s cancer chat. I have posted under other names before and had so few replies. I asked in Young Lives if there was anywhere for prebereaved/anticipatory grief parents to get support, and then thought Mumsnet might help. Am delighted there is now a children’s cancer topic. So here I am. (Under a new name).

we have been told DD is chemo resistant and nothing more can be done. No timescales, and DD is well, at school, no lines, no medication, no knowledge of what is to come. An Immunotherapy trial drug will be made available when her tumour markers start going up
again. So we are effectively waiting for her to die.
I am trying tolet her live a normal life. I get her to take some supplements and am trying to feed the family a v healthy diet as have been sucked down some of the adult ‘eat your way out of it’ cure pages in FB. We haven’t told other people because she doesn’t know and we don't want her to be treated differently.
of course we remain hopeful about the immunotherapy. Some days I convince myself that the diet and supplements are keeping it at bay.
But the ache of sadness never leaves me. It is not right to watch a child go from ‘normal’ to death and I have no idea what to do with it. By which I mean the sadness, the pain, the fear. So much ‘she looks so well!’ from well meaning family and friends. But I know there is residual disease and an official relapse is weeks/months away.
Within our ‘being normal’ we are trying to have fun and enjoy life, and I echo the gentle parenting comment mentioned in the ‘new thread’. I am a different person now entirely and cannot unsee or unhear the things experienced (especially on Lion) and I don’t think anyone can understand.
Am hoping others from the YLvC chat will join here so we can support each other through this nightmare.
sorry for the long opening message 😫

Hi Downtoyou I just wanted to let you know that I am thinking of you and your beautiful Jake. No words really - just that. Take care

@barefootcook thank you for your kind words, I have only just seen this.

We are doing okay, it's been 10 weeks already since we lost Jake and I'm not sure if time has sped on or slowed down, it's a weird feeling. My pride in him is keeping me going right now.

Downtoyou - he must have been amazing!! I hope that his funeral helped you in some way too.

@barefootcook His celebration of Life was an incredible day. There were around 300 people at the ceremony, they spilled outside and so they put screens out so everyone could watch. His school closed early so that staff and pupils could pay their respects. We passed through the school grounds and there were hundreds of people lined up clapping as we drove through, it was incredibly humbling and so special. Jake chose his own music and his celebrant started dancing at the end as we said our final goodbyes, and his friends started a conga and all tapped his coffin as they went passed. Sounds crazy, but I can't help but smile when I think of that. It was perfect, and just so Jake!

Some of the national newspapers have covered our story, I am so proud to be able to tell everyone what an incredibly brave and amazing boy Jake was and to raise awareness for his cancer.

I'm so so sorry for all that you are all going to. I anaesthetise these children at times and it breaks my heart, I can't imagine what you are going through

If any of you are inpatients at Kings and need a hug or snacks dropping off at any point please feel free to message it's the least I could do

Trying to not give medical advice but please be cautious delaying attending for electrolyte abnormalities, they have to be very abnormal / risky before we call people in out of hours

Xx

Sending love and prayers

@Downtoyou Thank you for sharing that. You sound like an awesome family in the wake of such sadness. Jake's celebration will be memorable for all who loved him. Take care

@Downtoyou oh my, it sounds wonderful! The conga and the dancing and the tapping your boy's coffin. I get such a lot of comfort when I think about the brilliant funeral we had for my dad. Thinking of you and your family now.

@Destiny123 anaesthetists are the absolute best of doctors. I don't understand how or why, but we never forget your kindness and humanity when you take care of our children. I often think about the female anaesthetist at King's who noticed my little one noticing the tv screen showing graphic images of the previous neurosurgery as she had to lay down ready for her neurosurgery. The anaesthetist quickly moved it away as she saw my girl seeing something she shouldn't. I think about the anaesthetist who let me hold his hand down to the theatre for my daughter's first urgent craniotomy as I was in shock and the one who came to visit my girl on the ward a few days after a shunt revision. Your kindness is so appreciated, noticed and needed.

Thankyou :) we try our best. All the Kings anaesthetists are super lovely (tbh vast majority are, only met 2 grumpy in 8y of the job), it's the little things that make the differences

Greetings from King’s, home of the loudest iv pumps in the land……😉
suspected viral infection, really nasty rash. Suspected measles but testing for epv and vzv and a tonne of others too. Apparently lots of
measles going around (this is south London for the non locals).

And for any visitors to this thread, my child
was fully vaccinated but chemo can wipe the immunity. She has had so much chemo that very unlikely she has any left. Her blood has been taken to see if she has any immunity to measles, if not she can have a measles specific anti viral. But the results are not back yet because the cyber attack on London hospitals several weeks back is still causing delays as some elements of automation not back up and running.

The staff here had MMR boosters recently as so many cases of measles seen recently. I can’t believe the recklessness of not vaccinating a child. Don’t reply or try to engage in anti vax views with me here, it isn’t the place. I hope
it is something else and I hope can get out soon but suspect DD is on the 48 hour iv antibiotic protocol.

Oh no @ScaredOncologyMum . Having been through similar ourselves, I am so sorry you and your DD find yourselves back in Kings. If I can bring anything to you (coffee, food, crappy magazines etc), please just shout.

Glad her immunity levels are being checked (Kings missed this with us), as it's important to know. Have they said how long the antiviral regime will be, and if it has to be given via IV or can it be pills taken at home? (Apparently DS could have had anti viral pills for his chickenpox, if it hadn't spread to his brain.) I hope you get the results of the blood tests soon, and it us something that won't require a long hospital stay. X

Not posted for ages, so a quick update. The rash remains a mystery. No results came back from any of the tests so discharged after 5 days. A decision was made that as the last scan showed disease progression despite oral chemo it was best to take a break from chemo and build strength and enjoy life without worrying about neutropenia and mad rashes etc.
so a relaxed summer followed, few trips, outings, all v chilled. Later in the summer she started with back pain again. There was growth in spine and she had a dose of radiotherapy to calm that down. She’s had PET and CT and then last week had a really worrying breathless episode that resulted in an xray. The lung mets are merging and causing irritation- the team are amazed she is doing as well as she is considering how the xray looks.
have been offered more palliative chemo. She is of an age now that she has to consent to that. Going to have yet another GFR to assess whether renal function could cope with more chemo. Am so torn. I would so love more time. But even if renal function would cope, is the neutropenia, low platelets, sepsis risk, sickness and hairloss worth it to push the inevitable down the road a bit? What if it makes her so sick that kills her?
Impossible decisions. We even started down the end of life care planning/ DNR discussion today. And yet she is at school. It is like a hideous parallel universe we live in. I don’t even know how or what to feel now except sad and overwhelmed.
If any of you have had experience either way with palliative chemo please let me know your thoughts. Hope everyone else is doing ok

Hello @ScaredOncologyMum So sorry to hear scans show further disease progression. I don't know what to say. It must be so overwhelmingly awful. What does your DD think about more chemo? I think all you can do is be guided by what she wants at this point. X

Thanks @C152 - we haven’t discussed it yet but will have to. The parallel universe means we just avoid these hard conversations but cannot carry on doing that. It is the right thing to do and also the hospital won’t do anything without consent now. All so grim. Hope things better for you

Jesus, how awful. How old is your DD now? I thought she was about 13? It's astonishing the hospital switch from actively ignoring children's wishes (in our case, anyway) to suddenly saying they can't act without your child's consent. I don't know whether that's a good thing or not. I don't even know where one would begin to have that conversation with their child...

I was as honest as I could be with DS from the start (which his consultant gave me shit for), but I still don't know how much of it he understood/understands, or how much he has deliberately forgotten to try to protect himself. I do wonder what they think to themselves about all this, but don't want to say out loud or talk to us about. Does it weigh on them as much as it does on us, or do they just, for the most part, get on with being kids and the scans etc are just blip bad days that they put behind them as soon as they're over? I hope it's the latter.

No one should ever have to be in the horrible, heart-breaking situation you are in. Again, it's a useless thing to say, but I am so sorry. I imagine you all want to spend as much time together as a family that you can, but if you want even a 15 min break to get outside and have a coffee or shout at the heavens, let me know. X

You are all such wonderful, brave human beings ❤️

Me again. Everything rapidly changed since last post. She had the radiotherapy and seemed pretty ok and then over the course of a few days got super sleepy and nauseous and I thought we were losing her. I took her to local and they scanned and turns out a large brain met causing pressure, headaches, sickness. Heartbreaking conversations followed about what to do. Very difficult. She has known all along, said she didn’t worry about it as she might be hit by a bus, and she decided to have surgery. Tumour successfully removed but there are other smaller mets they cannot reach.
she recovered amazingly well, out of bed next day and back to school within a week. Amazing highs. But now we all have a nasty virus, she’s sleepy again and accepting oxygen and started a new chemo (the oral one we were considering when I last posted). So cannot really distinguish what is disease, what is drugs, what is virus.
The palliative team have delivered a locked box of iv meds which is a bit off putting, but they are all nice people. Maybe this chemo will stabilise or shrink. Hoping counts don’t plummet
over xmas. The parallel worlds have collided and started telling people irl. Which is hard. Other children (older) not sure what to do. This is exhausting and terrifying in equal
measure.

Your DD sounds amazing, @ScaredOncologyMum . I'm glad they were able to remove the tumour and your DD is home. I wish there was more they could do to remove the rest.

How shitty that you've now all also got this awful virus. I imagine it may have hit your DD harder, given all she's been through recently. I'll be hoping she remains stable/improves, so you don't have to go to hospital over Christmas.

Having the lock box of meds must be scary. It must also be pretty horrific having these two worlds you've kept separate for so long, colliding. But now that it's out there, is it possible you will now have more support, even if it's just the freedom to talk to more people about the situation, if you wish? I don't have any experience of siblings, but from seeing how other children generally behave, they will probably take their cue from you and your DD as to how they carry on.

That must be so hard for you all to now be telling people. I hope no one has said anything annoying.

@ScaredOncologyMum So sorry to read your update ❤️. Why oh why are we having to deal with this shitty life. It is just so unfair that our children are not getting to live the lives they so deserve. Your DD sounds like an absolute superstar, what a wonderful brave girl you have.

Despite DS1 having a second craniotomy and being in the middle of 6 rounds of oral chemo, the bastard tumour is still growing. Chemo changed to more aggressive strength - IV, a tablet the same day and then a 10 day course of different chemo - 4 cycles over 6 months. Scan results on the 30th Dec, but we already know it’s still growing as a couple of weeks ago he suffered a massive seizure and had to be blue lighted to hospital. CT showed a lot more growth. This was our local hospital rather than the one that he is being treated at, but they upped his seizure meds and sent the scan across to our consultant.

I'm sending my love to you all x

How utterly unfair, exhausting and terrifying, you write with such strength and love. I'm so sorry.

@BellaVita So sorry to hear your update. It is horrific, what our children have to suffer.

Me again. Another twist in the tale. Terrible headache, call to main hospital, advised on pain relief, vomited and felt better. Then vomited in sleep so another call and long story short: 999, ambulance, resus, more very difficult conversations, brain scan again, admission, 4 nights non responsive but calm and surrounded by family and friends and now it is over. No more chemo, no more scars, no more pain and sickness. She has been treated with amazing grace and kindness by all the staff here.

She was born here and she has died here.
love to you all. Thanks for being out there

@ScaredOncologyMum I'm so sorry for your loss op, it sounds like your daughter was a wonderful girl who put up one hell of a fight while taking it all in her stride.

Sending my thoughts and prayers to you and your family