Joseph's ongoing journey with Neuroblastoma

[Trazzletoes]

I've lost count of the thread number now, but my 3 year old DS, Joseph, was diagnosed with an aggressive cancer called neuroblastoma last year.

Part-way through treatment he has relapsed (currently still clarifying that, but it's almost guaranteed) and at that point long-term survival is less than 5%.

He is beautiful and wonderful.

smartie gets a double YAY YAY :)

Once for bleeding and once for nagging :o

I am ashamed to say I cannot get DH to donate...yet. He is scared. I have done my very best nagging persuasion, but he needs to get there in his own time (25 years we have been married, I am a VERY patient person)
I think once DD has done it he might just be shamed

Glad to hear Joe is doing ok still

Just wanted to let you know I gave my 15th blood donation last week and thought about Joe during it

YAYYAYYAYYAYYAYYAYYAYYAYYAYYAYYAYYAYYAYYAYYAY for ooh

And YAY for me, because I finally managed to get to a donor session this afternoon so a pint of Malverns finest is on its way to someone somewhere.

And :( for DD who has invisible veins, and they couldn't get one to pop it's head up and be counted. She is REALLY cross and sad that she went through all the boring forms and bits and bobs and didn't actually get to give up any blood. She is going to ask her Boyfriend to donate on her behalf.

yay for you norks! and booo for your DD, tell her to keep trying - my first couple of attempts were like that!

Can't bleed but have done the organ donation sign up.

Thanks norks and darcy

Joe is still doing fine though he is noticeably more tired as we get to the end of this week. Only 2 more radiotherapy treatments though which is good.

Am feeling a little despondent though as was talking to another neuroblastoma parent whose child was diagnosed 2 years ago. Every child treated at our hospital that they met during treatment and every one since, up to Joseph, bar one child who is still undergoing treatment, has relapsed and all but 2 of those have already passed away. It's gut-wrenching and has made me feel quite reflective.

Also feeling precious as we would have been going on holiday tomorrow to the west coast of the USA to visit my DB and his family. I miss them. I was so looking forward to a fortnight of sunshine and beach and fun. Joe was so excited about going on a big plane. God only knows when we will be able to go - I can't see that we will ever be able to afford the insurance for Joe to go. At least not for 10 years and who knows after that. I know holidays are a luxury but we haven't been abroad since 2010 and were so looking forward to a proper sunshine break.

And I've had a text tonight from a friend who has organised a meet up of some old friends in a nearby city... But J is likely to be in hospital and DM will be mid-holiday so I won't be able to go. I'm just feeling crap about all of this. I know it's selfish and I know J is going through so much more but I just never get a break.

Apologies for the pity party.

(((Hug))) to you trazzles

((hugs)) from me too.

Thanks.

I know I'm just being silly and frankly should be bloody grateful for what I have. And I am! I just am sad for missed opportunities.

And I watched Tuesday's Panorama which both upset me and have me the rage so it's everything combined!

Hi Trazzles I'm glad that Joe is feeling fine but tired - radiotherapy knocks them for 6 as well. You are not being selfish, your life as an individual, as a couple and as a family has been put on hold. You are pulled in every direction without the ability to make plans. It's immensely tiring and incredibly hard. Big hugs xxx

Trazzle,

It's not silly, it's natural. If you weren't upset by whatever was on Panorama, ( sorry, didn't see), by the tales of the hospital and if you didn't miss your freedom and fun you would be inhuman and that isn't what your DH and dcs need and love.

I wish we could put you on s magic carpet and whisk you to the US or a sunny clime. The US has long been out for us and we only used to get abroad where the consultant said we could go ( Switzerland) and we could get back to GOSH in 5 hours or less. But all being well, you will like us get to interesting places.

Love and hugs and gin and tonic, and as a colleague says, wine and whine.

min I hope you had a good break and that your DSs have too.

Hi Trazzle

Just wanted to check in and say I am thinking of you. You have every right to feel down- it's totally understandable. Hope Joe starts to feel more energetic once the radiotherapy finishes.

Oh trazzles, bless you. I feel like that sometimes and I have nothing to feel sorry about. If make a wish can get you to Florida, can't they get you to yr dbros? Sorry if that's a stupid question.

Someone at work was speaking about the panaorma programme, I can understand why it would upset you.

Maybe speak to yr friends and see if they can pop by the hospital for a coffee and cake. Or is there anyone else who can give you respite? I would be there in a flash if I were nearer.

Anyway, I should be around all day if you want to chew the fat. O en repair man is coming! :o

Oven, not quite sure what an O en is!

I'm not surprised you're feeling as you do & the good thing is you can get it all out here.

Still splodging & wishing you all the best.

Trazzles You are not selfish or silly to feel the way you do - it is totally totally natural and justified!! Minmooch said it better than I can. Is there any way you can give yourself just a small break (even just an hour) for pedicure or quick meet up with friend???

[sorry - I know those are pretty woeful suggestions - just wondered if you could take a break for an hour or so]

But Trazzles remember that your little man defied all the odds when the initial signs of relapse spontaneously disappeared.

Surely that can give you some hope that perhaps Joe s case is not like many others x

I am still on a mission to get OH to sign up as a blood donor (as a former recipient, I can't donate) but he is rather needle phobic, so is rather reluctant.

I shall keep trying..slowly slowly catchy monkey..

Hugs to the Tazzle clan, you are doing so, so well

Hope you've all been able to enjoy some sunshine. Still splodging.

Just checking in. Glad Joe seems well. Sorry to hear about your unhappiness Trazzles - it really isn't fair that life is effectively on hold for you until Joe's treatment is over (and probably for a while after)
Blood donated. I have to say I had a panic in the car on the way there at the thought of it which is very unlike me. And then I gave myself a slap and remembered the thousands of children who are going through much more invasive procedures.
And FWIW it was fine - anyone reading this, don't be a wuss like me :o

Hi Trazzles, apologies if you already know about this charity, and I am not sure if it would be possible for you (and obviously not until radiotherapy is over) but have you contacted the Make a Wish foundation? make-a-wish.org.uk. Close friends of ours, whose little girl has stage 4 Wilms, have just been to Disneyland in Florida for a week, organised very quickly (and entirely paid for, including insurance, plus spending money!) by this amazing charity. They stayed in a 'village' nearby, which is set up for children who are suffering life-threatening illnesses. Our friends said they were pampered for a week - didn't have to cook, drive or do anything they didn't want to do. Might be worth a look? Wishing you and your family all the best.

Yay for stealth! You are bleeding wonderful!

If anyone is entitied to a pity party it's you trazzles.
So sorry about your missed holiday. You must be so gutted.
Glad to hear joe is doing ok, albeit tired.
I am not posting often due to health/family stuff but you are all in my thoughts xxxx