Children with Cancer

[Twunk]

The thread you neither want to join, nor leave.

We send our love to Minmooch whose son Will sadly died this week. Min, we hope you feel able to contribute to this or future threads when you feel able.

My son Alex, 4, was diagnosed with Acute Lymphoblastic Leukaemia on 26 July last year. I don't think anything can describe that moment when your world falls apart. You think of suffering, pain, and the very real possibility you may lose your child. Mumsnet has been a wonderful source of support and I have "met" some lovely people through these threads.

If you are in the same situation as us, or wish to show support please do join us. Sometimes people have questions on how to support a family who have just received a diagnosis - we are very happy to help.

Much love to all xxx

[Twunk]

Absolutely nothing to be ashamed of, Paris. This thread is for venting. It's very painful to see any child go through this, and it's not "normal". I hope the tumour is successfully treated and she's well soon.

I'm so sorry about your friend

Our dog has been ill this week, which in the scheme of things seems so little to worry about but I hardly slept. We think he injured himself as he is back to normal now. But he's 10 so we are getting a bit jumpy!

[TheNinjaGooseIsHooking]

well done to your boy Twunk! Hopefully the thought of the xbox will do the trick next time too. Our cat is part of the family too, we had a major panic when she went awol for a couple of days last summer, hopefully your dog has a while yet.

fromparis, hope your niece recovers well

dd had her check up last week, her tumour hasn't grown since her radiotherapy which is good news. Apparently it'll continue to work for a while longer so hopefully it'll start to shrink. Back in 3 months time and a scan in between so all looking good hopefully for now. Although she's now wise to the premed and managed to spit some of it out, nothing gets past this girl!

[missmargot]

Mackerella hi, so nice to see you!

How is everyone else doing? I think of everyone on here much more frequently than I post.

J is doing well at the moment, although his artificial eye is causing some issues at the moment but we knew it would be a long journey.

I'm not doing so well. I semi expected this to happen, I've been running on adrenaline for months and now suddenly I'm overwhelmed with the unfairness of it all. I'm angry and so very very sad. I'm also extremely tired as J also has glue ear and is sleeping terribly. I've been on the brink of going to the doctors for weeks but always manage to find reasons not to.

I know I should be grateful that J is doing so well and I am, I really am, but I feel like there's a black hole that I could fall into all too easily.

Can I ask what help, if any, you've had for yourselves and whether it has actually helped?

[Twunk]

Hi MissMargot I crashed and burned this time last year in a pretty major way, but still somehow continued on (just about) and worked my way through it.

I didn't have outside help beyond friends and family. I didn't really want to talk about it...I could probably do with something eventually - it's like Post traumatic stress and I do need to move on from it. At the moment I can't face it.

However I'm fairly together, I'm less angry and more accepting - a lot, I admit, is owing to Alex's excellent response to treatment, and I put it down to accepting that I will feel like this, and seeing it as part of the whole process.

Sorry that's all a bit confused, which does reflect my thoughts on this. Suffice to say Alex's recovery is mostly physical, the rest of us need to deal with an emotional recovery. It takes time.

[Twunk]

I've had enough of appointments (my other son has a learning difficulty and we've been caught up with that this year too). I just want to be left alone... But others I know have benefitted from "mindfulness" training that you might want to consider?

[Twunk]

Hi all

Just checking in to see how you are doing. We're just getting to the final three months of treatment - can't believe those dreadful words were 21 months ago.

Went for the second immuno globulins infusion on Wednesday - Alex had a sickness bug so was a bit dehydrated so they couldn't find a vein - ended up having to go to the operation recovery room to get an anesthetist to do it. It's funny - when you think you've said "goodbye" to something - there it is again. I've spent a lot of time in that room!

[TheNinjaGooseIsHooking]

Hi Twunk, how's your ds doing? Not long to go now!

dd is going in next week for surgery for unrelated issues. Sometimes it just feels never ending, one thing after another. We've had to request an experienced anaesthetist because she's hard to knock out because of non compliance. Hate that phrase but can't think of another way to put it!

[Twunk]

Well we've hit a record today - the number of people who tried to get a vein was 4! Poor Alex is like a pin cushion.

He's very well at the moment and enjoying the school holidays (we get 2 weeks off now rather than at Easter).

I'm sorry to hear that going to theatre is even more stressful than it need be

Nocake if you're around I've been thinking of you and hoping treatment is going well xx

[shits1]

Hi, been away for quite some time. DD, who had secondary AML after initial ALL and had transplant in Sept 2013, has finally gone back to school in January after nearly two years of being away! Her school schedule is really hectic!! She had her first Girl Guides camp two months ago and managed to get a stress fracture in her heel just skipping rope! She finally did a bone mineral density scan last week and we found out she has osteoporosis. Apparently all the chemo and transplant can do this. I kind of suspected, as her calcium levels have always been low and she needs to take Calcium and Vit D daily but she really hates the stuff. I was really upset when I saw the results but her doctor said not to lose sleep over it, and that it is not cancer. Well, I guess he is right!! So the next step is to see an endocrine specialist for the osteoporosis....


We are also catching up on her vaccinations after her transplant...she has had two doses of the 5 in 1, very very spaced out over 5 months because I am a bit paranoid...a parent from the US whom I spoke to whose daughter had several types of cancers said they avoid vaccines now as they believe it could trigger the disease...but her last dose of 5 in 1 was in jan, and her oncologist wants her to get her third dose but apparently there is a shortage worldwide?! so he wants to give her the 6 in 1 even though she has immunity from hepatitis b due to her donor being immune...he assured me it is safe to do so...i also asked her transplant doctor, she says it is ok too...so we might get it done today as her doctor will be away for two weeks and wants her to be vaccinated before then...i am sick with worry but hopefully it will be ok...

In the meantime, she has so much coursework, I am stressed out helping her with her work....I think I am more stressed than her!!!!!



Hope everyone else is hanging in there.

[shits1]

Twunk, I hate it when that happens. A trainee or new nurse poked dc's chemoport last week to take her blood but didn't do it properly and moved her chemoport and she cried. And no blood came out obviously. And another nurse had to take over. I really hate this life.

[shits1]

And while I am struggling to get my head around dc's osteoporosis diagnosis at the doctor's, H is watching movies with the OW.

[shits1]

I am truly sick of this shit.

[Twunk]

Shits! I have thought about you a few times. Firstly I'm glad to hear your DD is back at school. It does indeed sound hectic. I hope she is settling in ok. I'm sorry to hear about the osteoporosis - that's really tough. No it's not cancer but it's another kick in the teeth.

How's your little boy?

As to the H...are you divorcing? He sounds uncaring in the extreme. I hope his willy drops off.

[shits1]

Thanks Twunk...yes it is indeed another kick in the teeth...I almost cried...so pathetic I know, but I was just thinking to myself at that point, just how much shit and bad news really can one person take in in one lifetime before the body just shuts down by itself?

The little one is doing well, he is a perfect little boy, has such a regular schedule for naps, bless him. He has been a bit cranky since yesterday though, I can feel his teeth coming in so I think it is that. It's driving me a bit mad though as I can't help dd with her coursework and it needed to be handed in today! I managed to get a few days extension by saying dd has been unwell...well it is not entirely untrue, she has been to the doctor's 3 times this week for the osteoporosis, the vaccination and also what I thought was a vaginal or urine infection at first but turned out to be nothing.

Hmmm...we are kind of in limbo...I am too scared to divorce, and I think he is too selfish to...

[TheNinjaGooseIsHooking]

sounds hard shits1 how old is your dd? It's the whole one thing after another that is so draining. My dd2 is doing her gcse's currently and I'm struggling to keep up with it all, it's changed so much since I did my O levels!

Dd3 had a her surgery and all seems to have gone well as far as that was concerned. Although as a side finding they've discovered a cyst in her other eye that has grown since her last scan. It might not develop into anything but given her history it's ringing alarm bells everywhere. On top of that we saw the geneticist yesterday who thinks there's a genetic link to all the cancers we've had in the family but not the one we were originally referred for. So we're being enrolled in a study for childhood cancer genetics to see what, if anything comes back. And also a genome project for her genetic syndrome. Has anyone else here been signed up for any studies?

[Twunk]

No, Ninja only one to do with the treatment for ALL and as it turned out Alex wasn't eligible because he was "standard risk". It sounds good though because it means she will be closely monitored - I'm sorry to hear you qualify though and also sorry to hear you have the added worry of the cyst.

Well we have 2 months of treatment left! 2 months! I can't believe it from those dark days at the beginning.

[Queenmarigold]

Please can anyone advise me. We are 4 years out of treatment with serious life changing side effects. It is becoming more and more obvious we will be ignored, left out, not invited by some 'friends'. Usually I'd just not see them again but they are part of a circle which we socialise with. I am so upset, I valued these people and they were my DC's friends. They just don't get that cancer affects everything, always and forever

[Twunk]

Oh QueenMarigold you poor thing. How old is your DS? Is it his friends or are you also friends with the parents?

We have not got beyond treatment yet, and Alex is very young, so I can't advise beyond advice I would give anyone.

Just out of interest, and I'm not sending you elsewhere, but have you tried the SN boards on here? Might be somewhere you can also try.

This journey is shitty enough without it being made more shitty. Much love to you xxx

[BlackSwan]

I think people distance themselves QueenMarigold - they see you and your problems and think well that's their life, they have to accept it. People can be extremely selfish and not notice or care if they leave you behind, exclude you intentionally or not (or intentionally, but without wanting to acknowledge it). If you can't keep up, either physically, or socially, with what everyone else is doing - people can be downright brutal and leave you behind. I get it. I've seen eyes glaze over when I talk about our latest MRI. Fuck them.

[TheNinjaGooseIsHooking]

thanks Twunk not long to go now at all, hopefully the last few weeks will go smoothly!

QueenMarigold we found the same happened when it became clear that dd3 had special needs, people didn't know how to handle it, what to say, how to act etc, it's crap, really crap that it's times like this that you find out who your friends are. It's a common theme on the SN boards unfortunately. That said, since then things have got much better, we have new friends who mainly also have kids with SN or health issues so no worries about understanding each others issues and those from before that have stuck with us have done so because they really were good friends in the first place. Stick with the ones you know are your real friends, groups change and evolve over time and things will get better.

[shits1]

Hi...how is everyone doing? DD had her monthly blood tests last week at the oncologists and saw the endocrinologist for hormone blood tests. He says her FSH level is high which means she should have started her periods by now. But she hasn't. So her ovaries seem to be late in responding. So he said she may need to take oestrogen to try and kickstart everything. But there is a chance that may not work either, then she will have to be on the pill for life. Well, when she had her bone marrow transplant done nearly two years ago, infertility and ovarian damage was one of the things that stared me in the face when I stupidly consulted google, so I guess I have been bracing myself for this. But I didn't really expect her to hit puberty (as it were, not sure if she will hit puberty like other normal children due to all the chemo she has had and the transplant, although when I asked her transplant team two years ago, they assured me she would) so early, she is only 11, and I only started my periods when I was 12. But my gynae did say she may be starting soon, after she had the discharge on and off earlier this year, as it is apparently a sign that her period might be coming.
Anyway, I asked a friend who is a gynae, and she said not to worry, we can afford to wait until she is 14, as dd has not fully grown yet, and taking oestrogen will halt her growth and we don't want that. Am so relieved I asked her! Yet another kick in the teeth...am just so tired of it all. When will it end...

TheNinjaGoose, she is 11....ooh..I would be so interested for dd to join a study like that, we have cancers in both families too. When I had DS last year, I asked if it would be possible to test for cancer genes as I was petrified he would end up getting leukaemia like his sister, but I was told it wasn't possible to test for that....

QueenMarigold, I know exactly what you are talking about. People do not realise how it changes your entire life, it just consumes your entire life and being. Hell my H did not understand and still does not, and during dd's transplant somehow expected me to take care of him and his needs.

[shits1]

I know this is out of topic, but does anyone know anything about hip dysplasia in babies? Just posted a new thread on this:

I took ds who was 8 months old last month to the doctor's for a checkup as he had some red things in his stools (stool test turned out normal, it was probably watermelon or undigested fibres?) but as the doctor was examining him, he said his hips felt loose for an 8 month old and said usually they start tightening up by about this time or they feel tighter than this. There could be something wrong and I asked what, and he said maybe dislocated hips. My face must have changed because he then said ok, let's not talk about it, because it could be nothing but he said to give it a month and when I bring him in for his next vaccination or checkup at 9 months he will have a look again and maybe send ds for an X-ray....

We saw another doctor last week, and he examined DS and he says he can't see anything wrong, and he also said an X-ray may or may not be able to see the problem if it is very small, and there isn't any treatment and he will have a limp. And as they get older, maybe a hip op. Is this true??

Has anyone had this, and what were the symptoms? DS is very active and mobile, started crawling very early at around 4 months, and standing just a few months ago and is trying to walk now whilst holding on to furniture. I have read some previous threads on here which say their child who has hip dysplasia was also fully mobile but would like to know more...

I know it isn't really serious in the scheme of things, and as my other doctor might have told me "It is not cancer" but I am still just a teeny weeny bit heartbroken at the moment. I am not sure if I can deal with something like this if it turned out to be the case. Why isn't there a crying face emoticon when you need one.

[TheNinjaGooseIsHooking]

both my youngest 2 have been checked for hip dysplasia shits1 ds2 was fine, dd3 has low muscle tone but no hip issue. It's an ultrasound usually that's used to diagnose so if further tests are needed ask for one of those, much harder to keep a small wriggler still for an xray I was told treatment varied depending on severity so there are things that can be done, it's also possible to 'just' have an immature joint that they grow out of. Actually thinking about it the hv thought ds1 might have hip issues because the creases on his legs didn't line up so sent us to the gp who manipulated his hips and said he was fine. The gp was quite cross that the hv had panicked me over nothing, at that time he was running around, no sign of a limp or pain. It might not be serious but that doesn't that doesn't stop us worrying! Hopefully he's ok, doubt very much my ramblings are useful but have been there and worried too for my lot.

my dd was supposed to be going in for her checkup this week but was cancelled as her consultant is sick. It can't be helped I know but it doesn't help my nerves in the slightest having to wait another week.

[shits1]

Oh thank you so much TheNinjaGoose...i really hope it is nothing and that he was wrong...after what you said, i feel a bit better now.

Hope your dd's checkup goes well next week. I know what it is like, it can be nerve-wracking having to wait one whole week when the consultant is away for some reason! Hang in there :)

[Twunk]

Alex had a brace for 6 weeks when he was 4 months old. Here they routinely scan all children with an increased chance of hip dysplasia - and he was breech so he fell into that category. I think they only do the brace up to 6 months because otherwise things have settled too much. He was symptomless and his angle was only very very slightly out so the orthopedic consultant was (IMO unecessarily) erring on the side of caution.

Funnily enough (not!) we are seeing the physio next week as he has inward turning hips - he might grow out of it but I would like someone to check him over.

In hospital at the moment getting Alex's FINAL IV immunoglobulins! Just over 3 weeks to go to the end of treatment.

Shits I hope the world gives you a break from worry soon.