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.

I wrote a long message thanking you last night Naoko but I got chucked out as i posted it (probably thanks to the penis beaker. There's a sentence I never thought I'd write).

I will have a proper look when I get home but no I've not heard of them so thank you!! Very kind of you to look that up for me. The only thing is we're on a relatively high income. Well a middle-level income I guess. I just think they'll say we're too well off for help (though we're not well off).

We're going to be here until the weekend at least. Alex is loads better but they want to see his neuts up before we can go. They think he's been brewing this for a while since his bloods have crashed whereas they were holding up before.

Hugs to all.

Oh and Alex's doctor this time is gorgeous. I'm not usually one to notice or care but he is lovely too.

Hazlinh - every cloud

You never know what will happen. As we keep being told take every day as it comes. It gets boring...but I suppose it's true. I hope she continues to do well. You have a real fighter there xxx

Twunk so true. That is my mantra now. Taking it one day at a time. I used to be the type that buys plane tickets a year in advance to save money. Not anymore. I no longer know what we will be doing tomorrow...or two weeks from now..let alone a year.
They took bloods today for a dna test to see if her cells are the donor's. Am so nervous...

Got everything crossed for you. Legs, fingers, even my eyes. Hugs to you xx

How is everyone? I'm still lusting after the doctor (I think I must be ovulating - this isn't like me at all!)

We're in at least until tomorrow. I'm in this room 24 hours a day near enough. Prisoners get treated better!

I love my son but my god I need some time alone.

Thanks! xx
Yes tell me about it!! I am going crazy!!!!! Prisoners have it so much better. I am lucky if i get to go down for a cuppa tea or a bite to eat. Was exciting last week as starbucks just opened in the new building nextdoor!!! I have a bit of a break now as my darling mum came. to stay in the ward til wed while i go home to rest a bit (we have been in for nearly four weeks!!!) but during the day i still go to the hospital and give dd a shower and all her meds (she is on so many! Glutamate, potassium,paracetamol and now tamiflu as she suddenly has a blocked nose and a bit of sneezing!!)

Gee i wish we had a gorgeous doctor lol

I am just nerve-wracked with anxiety and worry...am hoping this is it....

From what I remember of my friend's parents when their younger daughter had a BM transplant, it took about 3 months for them to settle (and about 5 years for them to believe it had actually worked), their daughter settled much faster and just sort of got on with things.

Wishing your family, and especially your DD, well.

We're still waiting for a surgery date. Saw one of the surgical team last week and mentioned how hard it is to be in hospital 24-7 with a baby. He looked pretty aghast and said surely most people wanted to be there all the time.... I guess he is lucky and has never been on the other side . Hope you don't have too much cabin fever hazlinh. I tend to go over the edge after about a week and get stressed about being institutionalised and row with everyone. But perhaps i wouldn't if we also had a gorgeous doctor like twunk!

We're home now so will have to just have to be happy with my gorgeous husband

My god you'd have to be some sort of masochist to enjoy being in the hospital for days/weeks on end. I don't leave because my son is there and I will be where he is, but it's soul destroying at times.

Bugger know what we did before the internet.

Hello everyone.

Actually things are going quite well here - Alex is really well and happy at the moment. We have a bone marrow biopsy/lumbar puncture tomorrow then interim maintenance starts next week. That sounds calmer than we've had but actually we will be in hospital for 4 or 5 days every 2 weeks for high dose methotrexate.

How is everyone? You're all in my thoughts xx

Hazlinh - I hope your lovely DD is still doing well. That must have been a very hard conversation but it sounds like you handled I brilliantly. FWIW I think it wil be a lot easier for her to accept having known from a young age, rather than finding out out of the blue when she is older. I hAve everything crossed for the blood tests x

Reenypip - thanks for that, DS wold love it so will tae a proper look later

Unbuckle how is little I doing? Any news on the surgery date? I think we can safely say the surgeon hasn't been on the other side. D had his last radiotherapy session this morning - while we were waiting we met another couple with a young baby with stage 4 Wilms. He was having his first session today.

Twunk lovely to hear Alex is doing well. I didn't realise th maintenance stage meant staying in so much. Will you be on a ward or in isolation?

So D had his last radiotherapy session today. I have to admit I'm very glad it is over. The process itself is quite quick and painless but I found it very hard, laughing and joking with him (to keep him calm), and all the time knowing the horrific side effects it might cause in years to come. He's doing very well in himself though and is really enjoying school. His hair has come back too - I have been assured several times that this is fine, but it still makes me a little anxious. I spoke to his key worker yesterday and his next scan wil be in about 4-6 weeks, so I'm trying to enjoy and make the most of the next few weeks befo i start stressing about that.

Hi to Minmooch, Carebear, Stinkyfeet and Trazzles xx

Spoke too soon! D was admitted last night with a temp. Anti biotics started so will be here until at least Sunday. We're at our lovely local hospital - obviously I'd rather be at home but if we have to be in hospital there is no other hospital or ward I'd rather be on, the nurses are fantastic.

Hope everyone else is okay x

Oh no! Same as me last week! It's boring but necessary. Glad you like the hospital!

Hope he feels much better soon.

Alex's bone marrow biopsy didn't go ahead yesterday as it has been rescheduled (no one told me though...). The delays have meant that we will be in hospital for Alex's first high dose methotrexate on my husbands 40th birthday

And possibly for Sinterklaas too. Sinterklaas is where Christmas comes from - it means St Niklaas. Similar idea only it's more for kids and you don't get a bank holiday!

Still no progress for us, we are waiting for a date and also a location as we had a pretty terrible experience at the hospital they normally use and don't want to go back. Not sure we will have any choice tho given the risk of the operation as he is having surgery on both kidneys. Thinking of all of you in hospital. X

How annoying Twunk - what did you have planned for his birthday?

It must be very frustrating waiting to find out when/where Unbuckle. I'm assuming the hospital you are talking about is the one Daniel had his ops. I have to admit I felt the same after his biopsy - the nursing care wasn't great on that occasion. In the main I was better when he had his actual op, but it did vary depending on who was on.

Well we're on home leave now, which means we get to go home but they keep his room and we have to go back once a day of the antibiotics. It's only 5 mins away so its not too bad really. The blood culture confirmed it was a staphylococcal infection. Hopefully the antibiotics should sort it out - he certainly seems much better now so fings crossed.

I am really stressing about his hair growing back. At first I put it down to the fact that he had almost 4 weeks without treatment during his surgery/recovery and then only had vinc, but 3.5 weeks ago he had doxorubicin (which last time caused his hair to fall out within a couple of weeks). This time nothing and everything I have googled suggests that hair always falls out on this drug. His key worker said it is fine and doesn't mean anything but of course i am panicking that if it isn't stopping the hair cells dividing, maybe it's not stopping the cancer ones either? On the other hand his neutrophils went down as expected so I don't know. Can't believe I was so upset when it fell out the last time and now I'm willing it to fall out...

Nice you are on home leave!

Alex still hasn't lost quite all his hair nearly 3 months in and I know he was an early responder. He still has a fluffy head and a tiny bit if fringe. He has humongous amounts of chemo because that's pretty much the only treatment for his type of leukaemia.

My parent(s) are coming so one or other or both are going to come to the hospital to look after Alex and DH and I will go for lunch! Thankfully our previous plans hadn't got far - we were going to stay in a hotel in Utrecht and go out for dinner. The original original plans involved a weekend in London . I've decided we will celebrate next year, as we will also have been married for 12.5 years in May, which is a mile stone here as it is half of 25.

Isaac still has almost a full head of hair 3 months in and has not been neutropenic yet so i understand what you mean about worrying the drug isn't working. It is a teaching hospital in london i am concerned about having a) been there and b) spoken to other nhs staff. And yes it is the nursing not the surgery. And the cleaning inspection. And the man who came to grout the tiles. And the 30 other interruptions and interventions a day that left him sleeping only about 5-6 hours a day and not eating at all. But i think it's inevitable we will end up there.

Oh, forgot to wish you a good night off twunk!

Sorry I fell off the thread again - have just caught up.

Apologies but have been thoroughly caught up in the real life stresses of having to deal with this. My family is exploding apart.

Joe is in this week for his 4th round of antibodies out of 5. Strange to think there's a reasonable chance he could be finished treatment in 7 weeks - 49 days!

Or of course, that could just be when we get conformation he's relapsed and our worlds fall apart again.

I was due to look round a school for him tomorrow but DM's just called to say DD is unwell at home so that's unlikely now - I don't want to risk passing the germs around plus one of us needs to be here with Joe, so the other can't take a sick dd to look round a school .

I hope you and your DCs are all doing well.

Thank you Andro.

Unbuckle yes it is pretty obvious he has been very lucky and never needed to stay in for as long as we do. DD spent exactly 33 days in hospital this time for her bmt. I have no idea how we both made it through without going on a murderous rampage throughout the hospital. Actually I know how I survived, my mum came and took over half the time...plus the nurses and social workers have been pretty amazing...

Nocakeforme hugs to you and DS.

Twunk when DD had ALL, we spent every single holiday and festive season and birthday in the ward for the two years that she was on treatment. It became a bit of a joke after a while. In fact she was first diagnosed with ALL on Christmas Eve. On her birthday, my very kind sil paid for a clown to come and entertain her in hospital. One of the best birthday presents ever.

Trazzletoes so sorry...I guess we all have our own family explosions when we have to go through this shit

Anyway, the latest from us: dd was discharged on Friday!!!! with a big bag of new meds!!! antivirals, antifungals, anti graft rejection drugs, steroid cream, bum cream, nasal spray etc etc. docs practically shooed us out of the ward despite us insisting that dd wd be safer in the infection-controlled environment! i was so nervous about her being sent home!! she still had some fever and mild diarrhea (3-4x a day of watery or mushy stools) and watery eyes and rashes all over but they insisted she was fine. Her neutrophils were good and her ANC even hit 1.65 so they said she was engrafting and she had engraftment syndrome (with the rashes and fever) so I had to quickly disinfect and prepare the house, wash the curtains and send the carpets for cleaning (don't plan to unroll them once they get sent back to us). dd's dna test results are out today. it's really good news, her cells are 100% donor cells which was what we were hoping for. so hopefully it will stay that way...they will test again on Day 100, Day 200 and so on. She did a bone marrow on fri, and the results aren't out yet. she had her first post-bmt check up today. unfortunately her bp was a bit high, and combined with low platelets, the doc decided to admit her. so we are warded for one night....blerghhh. the anti graft rejection meds can cause high bp so they have stopped it until tomorrow morning.

Hugs to everyone xxxxxx

Hazlinh!!! I am cautiously very optimistic for you!!

Trazzletoes you must be terrified after the relapse/unrelapse thing before. I have every hope and wish Joe will continue to be a medical marvel (in the good sense).

Sorry so many individual messages - my brain cell is having a night off. Hospital sounds like a nightmare. I hope it will be better than last time x