My Daughter's Cancer - Thank you to everyone that donated to TCT

LukeTC

Seriously glad to hear things are progressing in the right direction

gabriel959

Those are fantastic news, I am very happy your daughter is doing well.

meanredspider

Latest news is that we've finally had the results of the tests that show how well the chemo is working. It's good news: Eve is in "remission". She starts chemo again this week to mop up the remaining cancer cells.

It's far too complicated to explain but there's still a load more stuff involved with her long-term prognosis but this is an important first step. There are still a number of ways, too, that it could go badly wrong but we remain totally positive. Treatment will last another 3-4 months (assuming all goes well) with visits to Addenbrooke's at least every other day.

Thanks for the support!

gabriel959

So happy for you mate! Great news for the family.

davesnothere

Happy to hear your positive news, everything crossed here for the next few months for you all.

Kudos to you for your positive attitude, it must be incredibly difficult. I can't imagine how I would cope if I were in your position.

Sending big love to you all x

veronese68

Brilliant news, a good step in the right direction. Hope the chemo doesn't affect the rest of her too badly.

rjsterry

Just spotted this, MRS. Obviously very sorry to read the first post, and very happy to read the last couple of posts. Consider me reminded to get back into the habit of giving blood.

meanredspider

Thanks, all. It's already been a pretty tough journey that turns everything on its head. It doesn't help that we're based 500-odd miles from home (where youngest is doing his final year exams at school and that we're selling in the summer) and 120-odd miles from work. But then you see what some of the kids and parents are going through on that ward and we know how lucky we are. My wife was talking to a parent whose child hasn't responded to treatment - that's a desperate place to be. We take what we've been given without complaint.

keef66

That is marvellous news; I'm so happy for you all!

meanredspider

Thanks! We're back in today starting next chemo. Docs are very happy with her detailed results - no detectable disease which is even better than the preliminary result they gave us on Tuesday.

meanredspider

Such are the highs and challenges of cancer treatment- had to rush Eve into A&E last night as her temp spiked and we're under strict instructions to get her in within an hour if this happens. 3am we were back up on the TCT ward and here for the rest of the weekend most likely. Almost certainly just a reaction to one of the chemo chemicals as she's fine again now (apart from the usual grimness of chemo). I feel slightly less human than I do after the 14-hour flight from Singapore (it's nicer than A&E at midnight on a Friday). We were in the outpatient unit for 9 hours yesterday too.

rjsterry

meanredspider wrote:

Such are the highs and challenges of cancer treatment- had to rush Eve into A&E last night as her temp spiked and we're under strict instructions to get her in within an hour if this happens. 3am we were back up on the TCT ward and here for the rest of the weekend most likely. Almost certainly just a reaction to one of the chemo chemicals as she's fine again now (apart from the usual grimness of chemo). I feel slightly less human than I do after the 14-hour flight from Singapore (it's nicer than A&E at midnight on a Friday). We were in the outpatient unit for 9 hours yesterday too.

Hope it is as you say and you are back home soon.

navt

Hope your daughter is healing up well. 25th donation last week and was thinking of her.

graeme_s-2

Thinking of you and your family MRS. Crap situation to be in.

meanredspider

Thank you, folks - appreciate the thoughts and deeds.

meanredspider

Quick update because I know a few people wonder how things are going.

Last week was pretty tough. Eve was admitted to the ward with a potential infection. Then, on Monday, we were told that the detailed tests that they do because she is on a trial showed that she was not in "molecular remission" - this meant that, without more radical treatment, she was at high risk of the leaukaemia returning. This treatment is a more brutal regime of chemo followed, most likely, by a bone marrow transplant.

For those that are interested (skip this para if you're not), a bone marrow transplant works like this: basically they destroy Eve's marrow with very strong chemo then infuse her with the stem cells from someone else's blood which find their way into her marrow and replace hers. She effectively ends up with someone else's immune system. This obviously comes with risks: she has no immune system for a while and the new immune system might not like the new body it finds itself in. The transplant itself is therefore pretty easy (relatively) - the months following are clearly fraught with risk. To cap it all, the chemo that destroys her marrow will also destroy her ovaries. They hope to harvest eggs before this happens (2/3 of my potential grandchildren will then be in a freezer somewhere: Eve's in Cambridge, Charlie's in Glasgow).

Anyhow, back to last week and, in a horrible stroke of irony, the IV antibiotics Eve was given seemed to cause her to have a fever all week. Finally, after running out of ideas as to what was causing the fever, they stopped the ABs and she recovered. Unfortunately that meant she was tired and had hardly eaten all week. That's really mentally and emotionally tough as they were threatening her with a feeding tube.

In more positive news, she was selected to trial a new combo of chemo which is less harsh that the usual regime but expected to be as effective (chemo is a fine balance of poisoning the patient to levels that they can just about tolerate). Also, it seems that the search for donors has already turned up 100 potential matches (the better the match, the lower the risk).

As an appeal, young males are ideal donors and donating isn't much harder than giving blood or platelets and is only needed to be done when someone actually needs your stem cells. Before donating, you get a dose of drugs that allows your stem cells out into your blood stream then, after a week or so, you get hooked up to a machine that draws off your blood, spins out the stem cells, then gives you your blood back. Charlie had it done (for himself) when he was 13 - it's very easy and really has the potential to save someone's life for just a few hours of yours. The Anthony Nolan Trust is the place to go to register. Thank you.

Eve has been through the mill emotionally- I think we're all going to go through some more of that before things get better but we're still staying incredibly positive.

Thanks again for your messages of support - it's totally appreciated and very humbling.

Richard

veronese68

Eurgh, that's really tough. Glad they are trying the new combo rather than the stem cell stuff at least. They threatened me with that at one stage so I know it's not pleasant. I can't imagine how hard it must be for you and your family to be going through this sort of thing again. You do seem to be positive and I hope you are all getting the right support.
Agree about marrow donation, I can't myself but my son is on the list.
Anything sounds trite given the circumstances, but really hoping for the best for all of you.

graeme_s-2

Thinking of you and your family MRS - it sounds really rough. I'm sure your daughter couldn't want for better support than you and your family are giving her.

To register for the Anthony Nolan Bone Marrow Register you need to be under 30 (although you stay on it until your 60). I thought that meant I couldn't register, but I've just discovered there's a separate NHS registry (both are searched when they need to find a donor), and they accept men aged 17-40 who already donate blood. Apparently you can register at your blood donation.

http://www.nhsbt.nhs.uk/bonemarrow/qa/index.asp#howcan

I'm not able to give blood at the moment, but as soon as I start going back to my 3 monthly donations I'll ask to be added to the bone marrow register too.

davesnothere

ahh man, breaks my heart reading this. Thank you for the update, sending all the positive thoughts that i can to you.

We had a very minor hospital stint with my youngest daughter a week ago. She fractured a vertebrae in a trampoline accident. Thankfully all will be well, no neurological problems, she has to wear a back brace for a few weeks and take it easy but 6 weeks or so she should be right as rain. What it has done it brought a lot of stuff into perspective. I met another dad in the hospital going through a similar experience to you with his 12 yr old son. It made our situation seem so insignificant.

Once again hats off to you and your family (especially Eve) for your strength and bravery. Hoping to hear some better news from you all very soon xx

Ben6899

Ah man, this is really tough. All I can do is send positive vibes and keep you all in my thoughts.

I'm not allowed to give blood - ever - so I presume platelets and the rest is also out of the question.

apreading

I missed this post until now - went on a bit of a rollercoaster reading it as things went from bad to looking good then took another downturn. Its not until you have lost people close to cancer and have children of your own to understand the bond that is formed that you realise just how hard something like this must be.

We know someone who has had similar for three children now - it's really tough. They have come through it though and prognosis is currently favourable.

It takes alot of strength though - qudos to you and your family for the way you are dealing with it and to your daughter for putting up a good fight.

I hope things look better before too long and the new trials help get that outcome that you are working towards. In the mean time, all the best thoughts from so many on here will be with you, myself included.

MrSweary

My thoughts are with you and your family MRS. Puts everything into perspective.

meanredspider

Thanks all - very kind of you.

Yes - it puts things into perspective. 2 or 3 of the kids who attend the ward have been told in the last 10 days that their disease is terminal. That also puts things into perspective. Cancer is utterly brutal.

I had been planning some sort of epic ride like an attempt on the double Cingles but Eve is adamant that she doesn't want me to do that. She may be right. Compared to what she's going through and what Charlie went through, it seems trivial. After all, it's just riding a bike up a hill.

slowbike

TBF - any charity fund raising event seems trivial compared to what the sufferers and their families get put through both physically and emotionally.

All I can say is good luck and thank god for our health professionals & support staff - it must be very rewarding for them when they can send people home to carry on/rebuild their lives - but horrific when they can't do any more.

meanredspider

Slowbike wrote:

All I can say is good luck and thank god for our health professionals & support staff - it must be very rewarding for them when they can send people home to carry on/rebuild their lives - but horrific when they can't do any more.

Yup - I remember Charlie's orthopaedics surgeon saying how nice it was to see the ones like Charlie who have had a good outcome because, he said, by definition you get to see far more of the patients for whom it doesn't go so well.

The last few weeks have been interesting lessons for me. I've spoken to a few people on behalf of Eve who will deal with her benefits and a more caring and helpful bunch of people you couldn't hope to deal with (you may already know this but I've been lucky enough never to have needed any government help). Same goes for the NHS doctors and nurses and support staff.

In stark contrast, I've been fighting the idiots at BUPA who seem totally incompetent and incapable of telling me what policy benefits Eve might receive under my employer's policy. At the same time I've also been doing battle with John Lewis over a faulty Hotpoint/Indesit fridge freezer we needed for this house - again, utterly incompetent.

As I've got older, I've become more "liberal" in my politics (not sure liberal is the right term - but I've often thought the Scandinavians have got quite a lot right in this area) and I'm certainly growing to hate dealing with most businesses who seem to be losing sight of what customer service is.

rjsterry

meanredspider wrote:

Thanks all - very kind of you.

Yes - it puts things into perspective. 2 or 3 of the kids who attend the ward have been told in the last 10 days that their disease is terminal. That also puts things into perspective. Cancer is utterly brutal.

I had been planning some sort of epic ride like an attempt on the double Cingles but Eve is adamant that she doesn't want me to do that. She may be right. Compared to what she's going through and what Charlie went through, it seems trivial. After all, it's just riding a bike up a hill.

I think it's perfectly natural to want to 'do' something practical to help, all the more so when in this sort of situation you have to let others do the 'doing'. I think the 'epic ride' also has a (very valid) coping mechanism aspect to it. But at the risk of sounding very trite, being there is the bit only you can do, so of course she is right. Fingers crossed for you all.

meanredspider

Thanks - yup - there's definitely a feeling that you should do something. There is also a feeling that everything is easy after this (had the same feeling after Charlie's treatment - and, its right, everything is easy). I'd only be thinking of doing it in 2018 - but not if she doesn't want me to do it.

lostboysaint

Only just seen this thread. So frustrated and angry for you. Went through a load (testicular and blood) with my 25 year old son last year and he's now recovered so know a little of your pain, frustration, concern, drive, desire and all the other emotions that we go through as a parent and your desire to do something "normal" to help. Very best wishes and love to you all from us "darn sarf".