Mini-trazzle and his candles vs. neuroblastoma

[Trazzletoes]

Hi, continuity thread for my little DS (3) who was diagnosed with neuroblastoma last week. Much gratitude for all the support the Trazzles have received. You nasty nest of vipers, you

Fab news all round, and so glad about all the kindnesses. You guys need and deserve it. Go team joe x

Wonderful news :)

Great news

That all sounds fantastic. It's great to read such a positive update.

Xx

I have never understood why a diagnosis of cancer isnt enough to start DLA without having to jump through hoops to get it.

Glad everything else is going well x

Wonderful results Trazzle, just wonderful.

I found filling in the DKA forms horrific, having to describe how disabled my son now is, it really was quite traumatic :-(

Many hugs

Hi Trazzles

Just popping in to say Hi. Lovely news about the meal rota, test results ( especially) and completion of the form. Yeah.

That's fantastic news! Love and best wishes to Joseph.

Really great to read such positive updates! [understatement]

Popping in with a big ol splodge and to say YOU ARE A STAR TRAZZLE!! Beautiful crochet and thank you for the Jammie Dodgers!

Big hugs

Xx

wowsers - such promising results....so brilliant he's responding so well to the chemo, and great to hear that he's finding the side effects a little easier this time round. Way to go Joe . Been thinking of you and wee Joe lots x

Oh that sounds great on the results front, Trazzles! Hurrah for chemo working, so pleased. Hope that ii continues in the same way! :)

Hope Joe's still doing well & enjoying some advent chocolate!

Hope Joe's still doing well & enjoying some advent chocolate!

Hope the weekend is going well for Joe and that he is still coping well with the latest chemo.

Hi, yes, apologies for the lack of updates. I'm currently trying to work out why I ever married DH in the first place, as well as how I'm going to be in hospital with Joe on Friday morning and at home with DD at the same time... (DM is going home for the weekend and DH wAs meant to take time off to help out. What a surprise: he now has a terribly important meeting... More important than his children and marriage. As always).

Joe is up and down - he has been sick a bit this week despite the anti-sickness drugs and has brought up his feeding tube so had to go in to get that refitted... Then they were concerned about his kidneys but it seems ok now.

His white blood cell count is high which is good so the daily injections have stopped until the next chemo.

However DD is still poorly and it seems Joe has a poorly tummy now so we can't go to the party that the charity has put on for the children . Also had to miss Santa switching on our local lights yesterday .

I was really low yesterday and I think it's because I love Christmas time so much but the realisation that there is a decent possibility that Joseph won't see another one is a bit too much for me. I'm putting too much pressure on myself to make this amazing but I want it to be perfect.

I'm pissed off with DH who is having his 3rd lie in in a fortnight by just refusing to wake up. He had a lied own during the rugby yesterday... No doubt my lie in counts as the extra half hour I got yesterday when DD slept in. DH is a knob.

Oh Trazzle,

My heart goes out to you. Your post made me cry because initially I felt that I could relate to your feelings about your dh. Men handle stress and anxiety much differently that mum's do. My dh loses himself at work and hibernates without thinking of my need for extra help or rest.

I can't relate to the anxiety surrounding the possibility that this might be Joseph's last Christmas. (Our trials have involved miscarriages and stillbirths that tend to happen around big moves and when dh us out of town.) As with everyone on this tgread, I genuinely hope that this is not his last Christmas and that you have years of Christmases together...

Your frustrations and anxiety are fully justified. Please keep posting. I don't seem to be finding the words to express my feelings today but I wanted you to know that I am reading your posts and that I have asked similar questions in far less serious situations.

Oh Trazzle. I have no idea what to say.

Trazzle, is your DH as heartless and stupid as he sounds? I'm not surprised you're pissed off with him, he's being completely selfish and thoughtless.
Very sorry to hear that your DD is still sick but good news about Joe's white count - there's your silver lining. :)

Again you've probably answered this elsewhere but is there any other family or friends who can help out and give you a chance to rest? Otherwise you could end up ill as well and then won't be able to be around Joe :(

Your DH really needs to man up and step up to his family job - it's a very immature response to do what he's doing. :(

PMing you as well.

Oh Trazzle, I really feel for you & it's good you can come on here & vent.

I agree with the poster who said men handle things differently & burying himself in work is likely his way if coping. Doesn't help you obviously, but I'm sure his job isn't more important to him than you guys are.

FWIW, I've felt that way about my DH too, for far less serious / worthy reasons.

It's a stressful time for you all & everyone here is wishing you all the very best. Hope today goes more smoothly & you get your rest too.

Oh Trazzle you are having such a rough time, I really hope next week will be better.

If dd feels better next week could she go to nursery on the Friday so you can be with Joe in hospital?

Sometimes if people cannot cope with the reality of life they bury themselves in work, not sure if your husband is doing this and of course it is no excuse, but he wouldn't be the first or last to do so. It is not always the case that they are men either, I recall that Nicola Horlick once mentioned in an interview that when her dd was so seriously ill with cancer she just worked and worked and worked whilst the nanny was with her daughter (in hospital I presume).

I would be outraged if my DH had done that at the time, but luckily enough he didn't so I didn't face your predicament. I feel for you though, this feeling that everything rests on your shoulders is the last thing you need/deserve.

I know it is almost impossible but do try not to put too much pressure on yourself to have everything perfect. Your kids would be most happy to be home with you and your DH at X-mas, that is the greatest gift to them. Of course, we are all very much hoping for many more Christmases for all of you but nobody can look into the future.

I hope your dd gets better soon and that Joe's tummy bug is short lived. I also hope that your DH sees some sense and gets his priorities right.

Lots of strength,
[Hugs]

Sending lots of love Trazzles x

Hey Trazzle, I've been lurking on and off on your thread since it started.

Christmas is an awful time for people in the boat you and I are in. My DH was diagnosed with terminal cancer in August and the oncologist, without saying it, made it pretty clear DH wouldn't make it to Christmas.

But he has. And like your fabulous Joe, my DH is responding really well to chemo. But it is bloody tough, this whole thing. It takes over your life and makes totally sure that life is completed dominated by it. I find it hardest with the contrast between our life and that of our friends. The ones who can go to parties, christenings, sports matches while we battle on with hospital visit after hospital visit and the awfulness that this disease brings.

I can't allow myself to drift on to think about next Christmas. I am forcing myself to enjoy just one day at a time and not to try thinking ahead. I try and remember that last Christmas we had no idea that we would be in this position now and we enjoyed it for what it was.

I cannot imagine dealing with this awfulness affecting a beautiful child - I cannot imagine that at all.

We were told to apply for DLA under special measures - can you do the same thing? It makes the form v simple to fill out!

Trazzle, poor poor you.

Agree with all the posters about how men react and are trained to react, and people like Nichola Horlick..but although it takes the blame out, it doesn't help on the tiredness and emotional exhaustion.

Christmas can be unbelievably grim at the same time as being beautiful. Every silver lining has a cloud. But I know you will make it as lovely as you can. Just remember that things being perfect are less important than people not being over tired , and mistakes and disasters of the material kind can usually be turned to laughter. It's the love that counts, nor the perfect icing.

And you need to cherish yourself from time to time. Soaking in baths with scented candles and a glass of wine, before coming down to wrap the presents or change a nappy. You have to look after yourself so you can be the smiling mummy.

I'm sure you will be brilliant and stoic. Raising a cup of tea to you.

Poor you. I have a feeling my dh might be similar, were he ever to be tested like yours is being. We had a lot of rows about priorities when my ds was in hospital as a baby. X

Your DH needs a bit of a kick up the backside really because it's just not on :( You are being so strong and brave but it's important for you to be able to take a bit of time away from the situation too. I sometimes have to point out to DH when he's using work as an avoidance strategy - I girds it's natural to bury yourself in something where you can see a positive impact but it's selfish.

Christmas will be perfect. The trimmings don't matter, just enjoy what you can do.