Children with Cancer

[Twunk]

Sadly we need a second thread :-(

My son Alex was diagnosed with ALL (Leukaemia) in July and we are making our way though the 2 years of treatment that are given here in the Netherlands.

If you want support, or wish to share your story, or can give support please do join us.

It's a shitty journey but together we'll get through it.

[unbuckle]

I didn't know about the red wee and tears, thanks for that, it would have been alarming! Are your dd and dh still in treatment or is the pain a long term side effect? It is great to hear from someone coming out of the other side.

Nocake,any news on the histology yet? Keeping everything crossed for you for a good result.

[Twunk]

I talked to DH last night and he said we can still try - just leave it a few months (tick tock tick tock). So I will be 39.

Is Doxorubicin the same as Daunorubicin? I could just google. Alex has had it as they have it in induction for Leukaemia here and he had slightly cloudy wee but nothing too alarming.

Goodness DianaTrent what a time you've had. You must feel like a nurse.

Thinking of all of you.

[Nocakeformeplease]

Minmooch - your poor poor DS . After everything he's been through it is so fucking unfair that he didn't even get a glance to enjoy settling back in at sixth form. I hope he is okay and felt able to go back in today.

Stinky - I am so so sorry to that you are back with us. So bloody awful and unfair just as he was doing so well.

DianaTrent - it's lovely to hear how well your DD is doing. You mst have had one hell of a difficult couple if years. I'm really glad to hear your DH pain is reducucing.

Twunk - hope you are all doing okay . I hoe the LP tomorrow goes okay and is not too uncomfortable for Alex. That's good news that DH is still keen to try for no 3 - Its horrible the pressure this bloody disease puts on every area of our lives though isn't it.

Unbuckle - how are you feeling? Does I have to go back for a rescan? Thinking of you.

DS seems a bit chirpier today and they said he can try something to eat later . He still seems to be producing a lot of bile though which is a bit worrying as that's is what happened after the first op but he doesn't seem to be in pain like last time so fingers crossed it is just taking his stomach a bit longer to settle down. They meet every Thursday to discuss cases - the oncologist said it was possible they would have the histology back by last Thurs but that they prefer to wait until they have all the information and the full treatment plan so it will most likely not be until our appointment at the marsden this Friday. It makes me feel sick whenever I see the oncologist to think he may already know about DS results and its tempting to ask him but I really do want to try and wait until we see the consulant who will have all his information in front of her if that makes sense.

[unbuckle]

I know what you mean about the feeling the oncologist already knows. We won't have another scan for a month. Who knows what is going on inside our kids?

[Twunk]

I physically shake when I see the doctor. When I first got the news I actually threw up (and I'm not much of a chucker). I can understand why people avoid doctors for the rest of their lives!

We had the MRD (Minimal Residual Disease - essentially what minute numbers of blasts are left in the bone marrow) 2 weeks ago and won't get the results until the next one at the end of consolidation. Consultant says she doesn't know, but I don't know whether that is true or not.

[Stinkyfeet]

Thanks everyone for your kind words. Things are going well here; ds1 has been back on chemo for nearly 6 weeks and has yet to suffer any side effects. No hair loss and bloods all fine. You'd think I'd be happy, but it just makes me worry that the chemo isn't doing its job. Can't win really.

[minmooch]

What chemo is he on Stinky? My DS is now on Temozolomide. He has not lost his hair although it is definitely thinner. He has been sick but he has been sick throughout treatment - at the moment he has just had 8 days of no vomiting but chemo tablets tonight could put an end to that run. It's the first clear week throughout treatment. It's such a hard one as I worry too when he is well that chemo is not doing enough. You are right - you can't win. Xxx

I would never catch the eye of DS consultant after scans and normally had to wait 2 weeks. It's very difficult to not to try and read the way they are looking at you. Fingers tightly crossed for everyone waiting for results xxx

[unbuckle]

Well, i started the new chemo today. I wasn't there, happens to also be my older son's last day before starting school. No red wee yet....

[minmooch]

Fingers crossed Unbuckle that I sails through this part of treatment. It's very hard when you have other children who deserve to have a normal, happy, healthy life too. My ill DS is 17 and my healthy DS is 16 they should both be doing very similar things :-( my youngest is wracked with guilt that he's getting to do things his elder brother isn't. I feel sad for both my boys.

[Twunk]

My sons are also a year apart minmooch. DS1's rude health is a stark reminder of Alex's illness.

[Stinkyfeet]

He's on etoposide and cyclophosphamide. And to be realistic, it was the radiotherapy that made his hair fall out last time - it started to grow back when he was on chemo! I think I'm just being paranoid.

Hope the new chemo goes well unbuckle

[Twunk]

Alex's hair has just started falling out. Was beginning to think we'd got away with it too. I nearly cried when I realised today.

[Stinkyfeet]

The hair loss symbolises so much I think. Are you able to cut it short? Ds1 had a no 1 all over when it started to fall out last time - he hated waking up with it all over his pillow.

[unbuckle]

Isaac is a twin. At least they are not identical. Quite a lot of tears last night but no other obvious ill effects. He still has hair, although chunks are coming out. twunk, i'm sorry to hear Alex's is going, it symbolises the condition.

Hope everyone is coping ok with the new school term.

Nocake, are you still in hospital? Hope things are getting more manageable.

[Twunk]

It was pretty long (see photos) but is now about an inch long. I can easily cut it shorter and will give him a buzz cut once it starts really getting going.

Gosh unbuckle such a lot for you to do! Twins then all this on top. It must be exhausting at times.

[minmooch]

The floodgates have opened tonight and I can't stop crying. The boys are with their Dad so it's just me and the dog. I don't want my son to die :-( I can't bear the thought that he will be on his own if he dies, I won't be there with him. I love him so much. I haven't cried for ages, felt slightly numb for a while, felt like I've been speaking about a child that's not mine, a mothers pain that's not me. But it is my child, it is me.

[unbuckle]

I don't know what to say, min. I have tears just reading it. I hope you have someone with you now.

[DianaTrent]

unbuckle my DD finished her treatment almost two years ago now. She was high risk on her MRD so we just have to hope that's it all over. DH had the whole tumour removed a year ago this month. He is getting no further treatment, only yearly scans at this point (it was benign, but was life-threatening due to proximity to and compression of the top of the brainstem). Their pain is a long term side effect for both of them.

Yes, Twunk, I definitely have - I do work in healthcare (not nursing though) so it's been something of a busman's holiday, all this. Doxorubicin and Daunorubicin are very closely related, but they are not exactly the same. Sorry about the hair, I remember that feeling so well. On a practical level, if you can get hold of a pile of the sticky rollers for pet hair, I found it really helped to have one always to hand whenever DD's hair was falling out to roller all the moultings off whatever bit of the pillow she wasn't lying on when she was taking a nap so it wasn't so tickly on her face and off her shoulders when they got furry. When it's all gone, you can try to make the best of it by having some fun with facepaints. DD absolutely loved having things like blue hair, mouse ears or butterflies painted onto her bald head, daft wee sausage that she is. I bought some electric blue and silver eyeliners with glitter in too to make sparkly bits on painted-on crowns.

(((min))). I'm so sorry. Thoughts very much with you and your DS. I hope the weather is nice where you are today and you can get outdoors and go for a walk or do something to give yourself a boost or even just a change of scenery. What the universe is expecting of you is so far beyond reasonable there are no bloody words.

to you all.

[Twunk]

(((Minmooch)))

No words. Just thinking of you. I hope you have lots of support. You must ask people if you need help with practical things. I hope you have someone to talk to, as well as coming here.

[Twunk]

I love the idea of face paints! Not sure Alex will though as he hates getting pen etc on him. I would enjoy expressing myself through the medium though.

I've cut his hair short and tbh I'm not finding massive amounts of hair anywhere. Yet...

[Trazzletoes]

Hi there, just signing in. Sorry it's been so long. I just don't feel like I have the time or the energy to do anything anymore.

I'm so sorry that you all are having such a tough time of it. min massive hugs. Your DS won't be alone. Ever. No matter what. He will always be in your heart and you will always be in his.

My 4yo DS, Joseph, was diagnosed with stage 4 high risk neuroblastoma last October. He's finished the active treatment and is now on immunotherapy in the hope that his body will recognise the cancer if/when it comes back.

In April he relapsed, but then spontaneously un-relapsed within a couple of weeks. We feel incredibly lucky but at the same time we are unsure what it means for his future.

Me, I've had enough of all this. I don't know how I can carry on even as we near the end of treatment, which seems so ridiculous. I've had a row with drs and nurses at 2am this morning because they weren't listening to me. They subsequently have treated Joseph without my consent but I just don't have the energy to argue anymore.

I feel like I might need some medical help myself to get through this, but then it seems silly when we are so close to the end (83 more days if no more delays)

[unbuckle]

Hi trazzletoes. I always have huge rows with doctors too, not sure if that is any comfort but i suspect it will be them, not you- being in hospital is so dehumanising and as a parent i tend to feel like i don't even have a name... Perhaps you're right to seek help yourself, as even when treatment is over there is a lot to come to terms with either way. I have seen the psychological support team and found it helpful. Fingers crossed for you that the unrelapsed stays unrelapsed.

I meant to post before, someone - nocake?- mentioned finances and applying for DLA. Our claim for DLA was accepted at the highest rate (we don't get the mobility piece as he is a baby) on the grounds of him needing personal care more than once or for a prolonged period at night, so my experience is it is worth going through the horrible depressing forms. Or preferably getting someone else to do it.

[Twunk]

I don't think we have such a thing as DLA here - wish we did as hospital etc is expensive. I am fortunate though as our financial position has not changed, other than running a second car.

Trazzletoes - I agree it's surprisingly dehumanizing being the parent. I've been told by medical people I "must look after" myself. Hmmmmm...the hospital provides me with no breakfast though both the hospital and insurance companies rely upon me being there all night and all day to care for my child. I have no problem getting lunch and dinner but there is often a lot of treatment and activity in the morning and a couple of slices of bread with some jam would be pretty helpful. //rant over

I don't think that our brains cope very well with sustained stress and sometimes it's much worse after the cause of the stress has gone. It wouldn't surprise me if any of us needed extra help getting through the last few weeks or months of treatment and a while after.

A therapist I've been in touch with has recommended something called "mindfulness" - I've not read much about it, but it seems like a version of CBT with a bit of woo thrown in. Might give it a go.

We're in the middle of a very intensive part of treatment right now - daily oral chemo, plus cytrabine 4 days in a row. Alex needs a blood transfusion tomorrow too. He has an ulcer in his mouth and his tummy hurts a lot. Feel awful about what he's going through .

[minmooch]

Hi everyone. I'm still shattered from my emotional release - more yesterday as well. It has been discovered that my family has a faulty gene that is linked to the bowel, ovarian and brain cancer in our family. I went to pick up my results yesterday. I have tested negative for the faulty gene. It means my DS brain tumour is just other bad luck rather than my dodgy genes. It means my other DS is at no more risk than the general public. Kept crying yesterday with relief for my youngest and sadness for my oldest.

Trazzles are you on any antidepressants? I have them to help with anxiety. I have little energy for most things now. I can't remember the last time I ever felt refreshed. The times I am leaping around feels more like mania than energy - it's all exhausting and feels never ending. No advice on that one as two years in I haven't found a way of dealing with this. I have no time nor energy to arrange counselling. Much love. Xxx

Twunk so sorry that Alex is suffering. I hope Drs are keeping an eye on the mouth ulcer as this can be indicative of mucositus - where they have ulcers starting in their mouth and all the way through their digestive system and all the way out. My DS was very poorly with this.

Much love and strength to everyone xxxxx

[hazlinh]

Hi everyone, signing in after a long time of being away. Things are moving very fast for DD 9 who has high-risk secondary AML. She had ALL when she was 5. Was in remission for a year and a bit before diagnosed with AML in May. It was a huge blow for us. The first time was awful. But the second time was a million times worse.

She was enrolled in a clinical trial and received clofarabine. Also some cytarabine and daunorubicin later (it made her wee go pinkish red), and then thioguanine as we searched for donors for her bone marrow.

After some false starts (we found four potential matches but they were unavailable or declined) they found a matching cord blood fr a baby in the US!

We also went through unnecessary stress and fears of delays thanks to our insurance who dragged their feet to approve the cost of the transplant potentially jeopardising the life of a little girl, we are on track and DD has started conditioning for the transplant! We are excited and nervous and anxious. The transplant is on 27 Sept. Today is Day -9.

The docs say this is the easy part. The worst will come after the transplant where she is at risk of Graft Vs Host Disease and could get really sick. She has to shower daily even though she hates it cos she has a Hickman Line. And she has to use two tyes of mouthwash several times a day to reduce the risk of mucositis.

And of course there are worse scenarios...

I do hope we are doing the right thing for her...

Am worried about her also as she is having more and more mood swings lately...she has been shouting at the doctors and nurses every day. she is probably nervous about the transplant but does not want to talk.

Wishing everyone lots of love