Children with cancer

[KinkyDoritoWithFairyLightsOn]

Hi all

I'm going to start this and keep bumping it as I don't think there is a thread for supporting anybody whose child has cancer and I know there are others about. In part, this is a good thing as it shows that it is still very rare, however it doesn't feel like that when you are sitting in a children's oncology ward.

I will be around and am happy to chat to anyone who needs it.

My DD is 13. She was diagnosed with ALL in January. She has to have 2.5yrs of chemo in total, if everything goes according to plan.

I also write a blog that is listed on MN. The catchily titled: The Acute Lymphoblastic Leukaemia Diary.

Best wishes to all.

Dear minmooch I'm just a long term lurker on this hread but couldn't not comment on your last psost. Jesus Christ, what a horrific few years you have had! My heart goes out to you

Minmooch I can totally empathise. In 2005 we moved from London back to the north east when I was 37 weeks pregnant with my first child. She was then stillborn at 42 weeks, 6 months later I suffered a miscarriage at 10 weeks then finally had my daughter. At 4 she was diagnosed with acute lymphoblastic leukaemia and is 21 months into treatment. We finish September 20th and I am looking forward to and dreading this in equal measures. I can't remember what it's like not to feel a constant gnawing anxiety and know this is something I am stuck with for the rest of my life.

Thank you Jokat - it's a good job I'm a strong woman really. If I wrote it all in a book I'm not sure it would be believed!

Labtest I'm sorry that you too have had such a tough time. I feel that my life has been one trauma after the other for so long now and I am totally exhausted by it all. No choice but to carry on.

I utterly despise cancer in general and childhood cancer in particular! The sodding disease has ripped apart the lives of 3 families I know, one victim of the illness was one of my close friends, she died when we were 15...her family are still a mess 15 years down the line.

I wish all the families on this thread the best for the future.

Hi P4B. The first 6 rounds of chemo for my son were all different so he had different reactions to each. One or two were not too horrendous, the otheres were. We were in hospital for all of them as he was too poorly to be at home.

He has been at home for a year of maintenance chemo. His is a 9 week cycle. First week he has CCNU and vincristine, the third week he has just vincristine and also on the 6th week just vincristine. Then after three weeks we start the cycle again. Some weeks he is more sicky than others. Some weeks he has little reaction. But in general the tiredness is building up. More so now he is exhausted after his chemo (one is tablet form and the other a quick push through a canula so not given over hours attached to a drip etc). I think his body is just tired after so much chemicals poisoning his body and I think this is cumulative. Poor child!

We have two more sessions and then maintenance is over. I so want his body to have a rest and a chance to feel better.

In a rambling way it would seem to me that there is no real pattern to how my son reacts but there is definitely a cumulative effect of extreme exhaustion.

I hope Beazy picks up soon. It is very distressing not being able to comfort them.

Much love xxx

My little boy has ALL and the effects of his monthly vincristine and dexamethasone seem to be getting worse - this was triggered during the delayed intensification stage when he had three once weekly doses of vincristine and 10 days on, 10 days off, 10 days on of high dose steroids. He suffers with neuropathy and has to take preemptive gabapentin and morphine to cope with the pain. His doses may be reduced slightly in the future to help him cope a bit better. It is heartbreaking when they are distressed and you are unable to do anything to comfort them. We had a night in hospital where he howled with pain all night - it was hideous and I will never forget it.

Our good run is still going - I feel very blessed!

Lots of love to everyone in this horrible club we never imagined joining xx

I believe it is cumulative. The doctors tell me it isn't, but DD definitely seems to struggle for longer after each vinc.

Much love to all of you, as always. I'm so busy I don't have time to breathe, trying to keep head above water at work, having DD who is going through a very dark patch, and doing all the 'house' stuff too.

Why is it that some people seem to get all the shit luck?

I'm so sorry min for the time you have had. It sounds hideous. ADs take the edge off. I feel much less anxious now I'm on them, but I am like a carb junky too. Fuck it. There's far worse problems in the world than eating too much cake. Keep on keeping on.

Sorry, lost the thread there for a while...

P4B I would definitely say the effects of Joe's chemo were cumulative. Although he had different reactions to the different drugs and he coped better during the chemo as time went on, he didn't come "up" so much from the downs inbetween, IYSWIM? He was generally more tired at the end, so Beazy's reaction doesn't sound unusual to me.

I can't imagine how those of you coming to the end are feeling. One of Joe's friends has just finished his neuroblastoma treatment and is waiting for results... I guess you spend so long looking forward to the end of the treatment, and then the end isn't really the end after all and there's ongoing tests and worry and side effects that still happen down the line... And obviously the constant worry of relapse...

you are all doing amazingly.

kinky are you in anytime soon? Give me a shout if you are (I'm going stir crazy in here)

min I have NO idea how you survived 5 months in hospital! We've been in since 5th feb and I feel completely suffocated. I cry on the odd occasion I get to feel sunshine on my face because it is just so horrible to have to come back to this room again. God only knows how Joseph must feel. He hasn't seen another child for weeks, poor lamb.

He is finally turning a corner from the high dose chemo but he can't open his mouth at all because its crusted shut from blood weeping from ulcers in his lips and gums - one of the consultants wouldn't let him have platelets over the weekend even though his count was below the level it should have been. He's been feeling sick today and I'm terrified that he's going to vomit and choke even though the nurse has told me to just pull the emergency cord and they'll suction his mouth - not sure how as there's only a small hole...

Anyway, the important thing is that he is slowly getting better. There's a light somewhere at the end of this particular tunnel.

trazzles next Thursday at 9am for final bone marrow and LP if you are there? It sounds like he's really going through it. I know those bloody consultants not following their own rules - if in doubt, make a fuss. Don't complain on the ward contact PALS as it's their job to liase for you if you need it. I hope his mouth settles soon - it's awful. Sending much love to both of you. xx

P4B - I hope the Drs have been able to find the infection so that they can give the right meds to treat it. Hope Beazy is feeling a little brighter.

Trazzles it sounds like poor Joe is really going through it. I used to demand to know why one consultant wouldn't give a transfusion (either blood or platelets) whilst another would. With my DS they would transfuse blood when his counts got to 9 even though the rule was only to transfuse at 8 as he was so tall and it made a real difference to him. Platelet transfusions numbers are different for brain tumors and I used to have to remind some of the nurses and Drs that his count was not allowed to go as low as for other cancers. Frustrating and frightening to think that me with no medical training knew more about my son's treatment than some of the Drs! I hope that poor Joe's ulcers start to get better soon. It's horrific to see them so low.

The hospital became my home more than my home for 5 and a half months. I only came home one night a week. For much of that time we had to share a room with others so there was no privacy at all. I will never take my bedroom and own bathroom for granted ever. A year out of hospital but I'm not any good any more in busy crowded places. My world got so insular that I feel vulnerable in places I didn't before. I like being home, feel safe and secure there. But I worry that I am perhaps a little agoraphobic now?

Kinky not long now til end of treatment. Hope you are doing ok. Keep that head above water. I'm expecting to have a bit of a melt down in our last chemo - it's all a bit frightening really. Everyone else wants to celebrate and I am terrified of the unknown.

Tabitha glad your run is still good.

It's all so crap really.

Keep on keeping on.

Love and strength to all.

kinky I can't imagine that we'll have gone by then! Drop me a message when you are settled. Joe is due an appointment at Jimmy's on Thursday to discuss radiotherapy but they are doubtful whether he will be well enough to go.

I am absolutely livid with the weekend's consultant because Joe just has a tiny hole to breathe through - he has to have flow back while he's asleep because his oxygen levels sink too low. Last night he felt really sick and I could hear him bringing stuff up - luckily it was a couple of small bits of thick mucus and, after I shouted at the nurses they eventually suctioned his mouth.

It says everywhere he needs platelets at 50. Over the weekend when they were around 40 they wouldn't transfuse and made him wait until they were, like, 18. The other doctors who have seen him since have described as mouth as "horrendous" and have said his platelets must be kept above 50 but I'm so mad that this could all have been avoided. It's scary for both of us that he can't open his mouth at all.

I'm going to chat to DH about it tonight and see whether we are going to talk to PALS about it, but when a Dr comes for ward round I will definitely be mentioning it and how angry I am.

min the consultant's reasoning at the weekend was that he didn't want Joe to have fluid he didn't need because of the VOD. But given that he was already past the worst of it and was getting rid of more fluid anyway and could have just been given a diuretic...

How frustrating Trazzles. I've just looked up the oil that I used for Will when he had mucositus - it's called episil - oral liquid for relief of pain from oral mucositus. It's is an oil in a small bottle that I could easily rub on Wills lips and inside. It does not taste horrid so it's ok for them. It coats the mouth and literally oils it. It worked wonders for Will.

It was being trialled when Will had it so don't know how readily available it is. But it is really worth asking for if you haven't tried it yet. I used to keep putting on Will long after his mucositus went so that it never came back as bad.

Big hugs xxxx

Thanks min is completely forgotten you had mentioned that before

Bit of an update: I kicked up a bit of a fuss because this afternoon it transpired that there is a piece of dried blood inside Joe's mouth - could be part of the stuff on his lips, could be from the roof of his mouth which is also covered. Either way it's a choking hazard... Fortunately it is still attached to something though.

We'be since had plenty of medical input and apologies(!) apparently the most likely reason for withholding the platelets is firstly that a sealed mouth was unforeseen (I guessed it was going to happen but the nurses have never seen anything like it before) but also apparently the body can develop antibodies to platelet transfusions so it wasn't as simple as we first thought - it makes the decision easier to understand though.

Joe is back on anti fungals and antibiotics because they don't know what is happening in his mouth and can't see his tongue anymore due to this extra bit inside.

We are basically hoping that nothing comes loose inside before the stuff on his lips breaks off(!!!!!) and especially that it doesn't happen while we are both asleep but the maxillo-facial surgeons are coming to look at him tomorrow and children's ICU are aware of him.

So stuff has now happened and its all a bit clearer now so slightly more relaxed... apart from the choking bit...

Jesus Trazzles. I am keeping everything crossed that the surgeons can help the situation today. It's just awful.

The things they go through.

I'm having another one of 'those' weeks, but nothing compared to you.

Washing machine broke on Sunday. I had an inspection in work Monday, so no time to contact anyone until Tuesday when DS was ill so had to stay off. Washing machine buggered, even though it is 10 months old and will cost the same as new machine to repair. Because it is under guarantee, can get manufacturer out to fix it, but pining them down has been a mammoth task. Anyway, fast forward to last night when DD gets horrendous - and I mean horrendous - episode of D&V, everywhere. Up at 3am cleaning her, cleaning bathroom and wishing a plague upon washing machine manufacturer. Am going to try and ring them to shout today, but had me on hold for over an hour on Tuesday. SIGH. If I can't get them out, might have to get a new one fitted which we can't really afford, but we don't have a laundrette anywhere near here and I don't have anyone to ask, especially for pukey sheets.

You couldn't write this stuff. I'm sure people think I make it up.

I'm also notching up my unpaid days off again.

Oh Trazzles that sounds so terrible for Joe and frightening for you. I hope you all managed some sleep last night. I hope that the facial surgeons are able to help sort out his mouth so that you are at least not worried about choking. Xxx

P4B I hope that Beazy starts to pick up soon. People don't realise how difficult it is when your child is desperately ill and things like going to the toilet is impossible. Even though Will was older I still had to tell a nurse if I was leaving him to go to the loo and preferably I'd ask them to sit with him as it always seemed he'd be sick in those moments I was away. Come on neutrophils - start climbing back up! Xx

Kinky. Aaaaarrrrggggghhh for you and your washing machine. I once had an ongoing telephone disagreement with Currys over a faulty tumble drier, the number of days I had taken off work for their engineers to fix but never show up. In the end I got a friend to help me put it in my car and drive to the shop I had bought it from. When we got there I carried the drier and put it down in the middle of the automatic doors so they couldn't shut. I sat on it and loudly started telling customers about the horrendous service I had received from the store/company. The manager was called and very quickly agreed to give me a full refund. I then wrote a letter and sent it to all members of the board of directors of the parent company and got £200 as an apology from them. It was only a tumble drier but the hassle it gave me! I hope both your children recover quickly and you get your washing machine sorted out quickly. Xxx

kinky oh sweetheart it never rains but it pours can I get my mum to drive to yours for a laundry run?

min I love your style! Is it Currys who are still in business? If so, I hate them - they are so entirely incompetent with no customer service.

The maxillo-facial dr has been and they're going to remove the clots on joe's lips today. I'm a bit nervous about it, but happy to be able to relax a bit more about the choking, although obviously he'll still have the gunk in his mouth, at least there's a possibility it will find another way out of his mouth!

Oops that was my one year old.
I am a long term lurker and often think of all of you and wish you strength to carry you and your dc through the horrors of dealing with this evil disease. I am in awe you and your wonderful children. X