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Mini-trazzle and his candles vs. neuroblastoma

(999 Posts)
Trazzletoes Mon 15-Oct-12 22:53:18

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 grin

Hi Trazzle,

Have continued to follow your previous thread, am in awe of your strenght. Thinking of you and Mini Trazzle x

WhereMyMilk Mon 15-Oct-12 23:00:44

Splodging in Trazzles.

Thinking of you all, and wishing you a peaceful night,x

hellhasnofurylikeahungrywoman Mon 15-Oct-12 23:01:36

Hi Trazzle and Mini Trazzle,

Thinking of your whole family and keeping a flame alight for you.

dikkertjedap Mon 15-Oct-12 23:01:54

Hope today went okay and the feeding tube hasn't caused him any distress.

Hope he enjoyed the visit of your DM and his little sister.

Also hope that he will be back home soon after his second round of chemo.

Thinking of you all and especially of Mini Trazzle of course,

x

stickybean Mon 15-Oct-12 23:02:41

I've been following your thread and have lit candles for your little boy. Sending so much love and strength to you and your beautiful family xxx

onedev Mon 15-Oct-12 23:03:41

Saying night again & hoping you all manage a restful nights sleep.

Thumbwitch Mon 15-Oct-12 23:04:48

Just checking in Trazzle - hope that you're getting some sleep now xx

Just checking in, thinking of you all tonight. x

dikkertjedap Mon 15-Oct-12 23:07:42

X-post with other thread. Sorry that having the NG tube being inserted was such an upsetting experience for Mini Trazzle. He clearly is a little fighter. Hopefully, he settles down soon and the doctors will be able to use it to get his strength up.

Hope you all have a peaceful night.

DameFannyGallopsAtaGhost Mon 15-Oct-12 23:08:54

Just lighting a fresh candle for this thread, and squeezing your hand across the internet

Hi Trazzle and the mini Trazzles smile. Just checking in. Hope you're all asleep or at least nearly asleeep

mothermars Mon 15-Oct-12 23:20:24

Hi
I've been following too and just want to wish you all the best. Sending lots of love to your little one xxx

PeppermintPanda Mon 15-Oct-12 23:21:26

My DD was diagnosed with NB stage 4 when she was 3. She is now an energetic little 7 year old, off treatment for more than a year and doing well right now. I remember that other people's positive stories helped to keep me strong through her diagnosis and treatment. Feel free to PM me if you want. I'll have a look for your other thread in the morning. I must go to bed now though since I'm too tired to string a sentence together properly!

LegArmpits Mon 15-Oct-12 23:27:15

Thinking of you often, Trazzles and beautiful little Mini Trazzle. Sending love and light from Barry again. (Barry the place, not the er..person.) x

Thinking of you here in Maidstone, kent, which was a little bit bare on your map. Your story brought a proper tear to my eye and has reminded me there are so many more important things to be doing than worrying about the small stuff. Will be giving my little girl a big kiss in the morning, hope you and your little boy are doing ok x

Sagelyhaunting Mon 15-Oct-12 23:49:35

Hey Trazzle smile Just checking in and wishing you all good things. Stay strong and have a splodge of light from the windy south of France smile

bobkate Tue 16-Oct-12 00:17:05

Thinking of you all x

BuffyFairy Tue 16-Oct-12 00:21:41

Night all the Trazzles. X

VintageNancy Tue 16-Oct-12 02:44:51

Checking in and shining a light here in San Jose, California.

Light still shining in Cambodia. Wishing you every strength Trazzle and your DS.

Pudgy2011 Tue 16-Oct-12 03:02:46

Keeping you all in my thoughts and sending you much strength and love from here in Cayman. Candles lit xxx

DeadQODy Tue 16-Oct-12 03:03:46

Thoughts and love from near to Hythe in Kent xxx

ripsishere Tue 16-Oct-12 03:07:26

A gleam coming to you from Kuala Lumpur.

SomewhereInCanada Tue 16-Oct-12 03:20:21

Candle still burning in Northern Alberta, Canada. Too cloudy to see if there are any Northern Lights tonight!

Sirzy Tue 16-Oct-12 06:38:04

Thinking of you all

elliepac Tue 16-Oct-12 06:45:14

Morning trazzle, mini trazzle and the rest of the trazzles. Just checking in with my splodge from Lincolnshire.

ChasedByBees Tue 16-Oct-12 06:52:34

Sending a light from Oxfordshire. Sorry to hear the feeding tube was difficult and hope his poorly tummy is better today.

lc200 Tue 16-Oct-12 06:57:56

Morning Trazzle, from Derby. Sending you lots of love, and thinking of you often. Kisses for Mini Trazzle.

Trazzletoes Tue 16-Oct-12 07:04:07

Am at hospital now to relieve DH. DS has got through about 15 nappies overnight. Poor poor little man sad

Sirzy Tue 16-Oct-12 07:04:49

Bless can they give him something to help or is it a case of better out than in?

Trazzletoes Tue 16-Oct-12 07:07:47

Not sure but tbh I'd rather wait it out if poss, he has been hooked up to so many different drugs this weekend, im not surprised his beautiful little body is having a hissy fit sad

strictlycaballine Tue 16-Oct-12 07:16:51

Morning Trazzles sorry you and your ds had such a tough day yesterday (and your dh and ds had a tough night too by the sound of it)

Hope they can do something to settle his stomach today x

Fuzzydeepdarkscarywood Tue 16-Oct-12 07:17:15

Just checking in with the S Bucks light splodge. Hope mini Trazzle's tummy settles down today x

BarmeeMarmee Tue 16-Oct-12 07:45:30

Another Bucks splodge checking in here. Sorry it wasn't a great night for DS and DH. Hopefully you managed to sleep well and recharge a bit. Thinking of you all and sending love across the ether.

Engelsemama Tue 16-Oct-12 07:58:39

Thining of you and DS Trazzle. Sending you a burst of light from the Netherlands. x

AuldAlliance Tue 16-Oct-12 08:11:20

Popping in from sunny (but chilly) Provence again. Sorry to hear about the tummy troubles and the tube insertion.
Sending positive thoughts and vibes to all the Trazzles.

thewhistler Tue 16-Oct-12 08:18:09

Poor little one, and lots of love and positive thoughts and light coming to you from a commuter train in to London.

Iteotwawki Tue 16-Oct-12 08:22:36

Was wondering how you were doing. Candles were lit in NZ for you all.

Piemistress Tue 16-Oct-12 09:34:23

Splodge from Aberdeen, thinking of you and your DS every day xx

Trazzle, sorry to hear he's got this tummy upset on top of everything sad

His cancer cells will be as good at fighting as me - that is they'll get scared and run far away as soon as anyone stands up to them. Which your little boy is, admirably.

blizy Tue 16-Oct-12 09:47:07

Trazzle, sorry to hear DS has a poorly tummy. I hope today is better for him.
Splodge of light still shining from Glasgow. x

tholeon Tue 16-Oct-12 11:44:08

So sorry poor little man with his poorly tummy. Ds had horrible poo when he was ill in hospital because of the drugs, probably less distressing for him though as he was a baby. Maybe ask them for some metanium to protect his bottom? Virtual hug.

catsrus Tue 16-Oct-12 11:48:32

poor baby - candles being lit down here by the edge of the English channel too and good thoughts being beamed north!

oxeye Tue 16-Oct-12 12:00:37

splodge of light checking in from central london
poor MiniT with his poor tum, agree with you better out than in, maybe just some cream for his poor bottom?
The NG tube, horrid in, will help give him strength
but handholding to give you strength

Haahoostory Tue 16-Oct-12 12:02:41

I hope your little man is doing ok. Light still burning for you all in Colchester.

pinkbraces Tue 16-Oct-12 12:58:48

Thinking of you all and sending lots of good wishes and prayers

Four4me Tue 16-Oct-12 14:13:55

So sorry the ng was traumatising for him, as it would be for any of our children. And poor lamb having such an upset tummy. Big hugs lovely. We are all here for you. Xxx

yani Tue 16-Oct-12 14:27:54

Hi Trazzle, I have been following you on the other thread.
Wishing your boy a calm day today x

BuffyFairy Tue 16-Oct-12 14:36:48

Hi Trazzle,

How is ds now? Hope his tummy is better and he's getting used to the tube. Poor little darling. He will have been glad to have you with him. It must have been horrid for you to watch.

How many days are they giving chemo for?

Thanks for the kisses from you and dd, she is too cute! We would send them back but dd has hand, foot and mouth and you definitely don't want that. On day 3 of a nursing strike. sad

Big hugs instead.

Ah, THERE you are smile
loads of love to the trazzlesies and a little medal for brave Teddy

ShiftyFades Tue 16-Oct-12 15:50:10

Hi Trazzle, so sad to read about the cells and the poorly tummy sad
How are you doing today? Really wish I could take this away from your DS, no one should go through this.
Luckily, your DS has his amazing family to help him fight (and all of MN).

Candle still burns bright on the south coast of Hampshire

Xxx

cedmonds Tue 16-Oct-12 17:04:20

Splodge of light from surrey. Hope his tummy is better. Its horrid when they are ill and in hospital and having to have lots of things being done.

cedmonds Tue 16-Oct-12 17:05:30

Sorry pressed to soon. I am sure DS will be happier to have you there. You are all being so brave for him. x

ToffeeWhirl Tue 16-Oct-12 17:45:55

I didn't like to post last night in case your last thread filled up, but you were in my thoughts. Sorry you had to witness the feeding tube going in (although it must have been good for DS to have you there) and that your DS is having such a horrible time with his tummy. I really hope it settles down for him soon.

VenetiaLanyon Tue 16-Oct-12 18:12:05

Can't believe how brave and strong you're being - sending not just candles but fireworks in sheer admiration. If anyone can help your DS through this all, it will be you.

Doobydoo Tue 16-Oct-12 19:13:28

Ah now.Hope your little chap has a better night tonight.xx

Another splodge from the South Coast, wishing you all a restful night.

thewhistler Tue 16-Oct-12 20:11:45

Venetia, pming you.

dikkertjedap Tue 16-Oct-12 20:39:24

I hope he is feeling a bit better and getting to grips with the ng tube.

Wishing you all a good night.

x

Chippychop Tue 16-Oct-12 20:49:52

I hope you've been able to eat something and keep your strength up.
We're right behind you and your, all your friends on MN

IwishIwasmoreorganised Tue 16-Oct-12 21:51:24

Glad I've caught up with the Trazzles.

Sorry though to hear how tough the NG tube insertion was for you both and that his tummy is so upset. Hope that settles soon and that the NG tube proves its worth very soon.
Xx

So sorry to read about the extra cells and his poorly tummy sad

Another splodge of light here from Newcastle upon Tyne. (Can somebody put mine on the map please as it won't let me do it on my phone?)

Hope you all have a restful night, you're all still in my thoughts x

strictlycaballine Tue 16-Oct-12 22:25:11

Just popping over to say 'goodnight' and wish you strength for next couple of days. Hope you can get some good quality shut-eye too.

Trazzletoes Tue 16-Oct-12 22:34:10

Hi, so I had a great sleep at home last night. Today DS has been decidedly off-colour, just lying in bed all day very lethargic but I guess that's to be expected, especially after such a broken night. I got to pop home this pm to get DD from nursery and have some lovely mummy-cuddles.

Hopefully we'll be heading home tomorrow. Buffy he's on day 2 of 3 days of chemo today.

As an aside I was very hmm today when a friend contacted me to let me know that cancer is a yeast infection and that if DS drinks bicarbonate of soda mixed with fresh lime, it should see him right.

If only I'd known that before I started pumping him full of drugs to make him sterile, make his hair fall out, possibly give him different cancer and maybe make him deaf, eh?

Oh no Trazzle - how thoughtless. Unbelievable.

I hope DS has a comfortable night and you can all look forward to this round being over soon.
x

Chippychop Tue 16-Oct-12 22:41:05

Big so splodge on the map from Bedford please (not sure how to do it on my phone)

Sending you a virtual lime tree trazzle wink. It will all work out, I promise

strictlycaballine Tue 16-Oct-12 22:41:36

Oh dear Trazzles I guess some people are so anxious to "make it alright" that they say precisely the wrong thing. How wierd though and a bit mad

Hope you can all head home tomorrow again smile x

onedev Tue 16-Oct-12 22:48:40

Some people are so thoughtless. He's a fighter with a strong family so ignore those that don't matter.

I do think it is worth making note of all these weird cancer-bolloxies that people are going to tell you.

There will be plenty and it will help to give us a wry smirk, whilst helping you to avoid a whole group of people.

Lime juice is best saved for Mojitos.
The good drugs are best saved for trazzleboy

Love and light from Malvern xxxxxx

ToffeeWhirl Tue 16-Oct-12 23:06:31

That's unbelievably thoughtless of your friend. Are they well-meaning, but dim, do you think? Well done on retaining your sense of humour in the face of such stupidity.

I'm glad you got to enjoy some lovely cuddles with your DD today. You are doing so well running from one to the other of your DC and trying to be there for both of them. It must be incredibly hard for you.

I hope DS is well enough to come home tomorrow. Night x.

JustSpidero Tue 16-Oct-12 23:24:57

Am totally shock at your friend - I'm all for exploring alternative therapies but that is ridiculous. Even if you believe it why on earth would you voice that opinion under the circumstances.

Sorry to hear your DS is so very under the weather with the treatment. I guess one can only hope that if it's making him feel like that it's making the cancer cells 'feel' even worse and fuck off to the far side of fuck where they belong. Hope the mummy cuddles from your DD gave you lots of comfort and strength.

I will have a Photoshop splodging session on Thursday evening and add candles for everyone who has mentioned their location since last week and update it with links.

Hope tomorrow goes ok and you're all able to get home for a few days. How are the rest of the family bearing up?

ripsishere Wed 17-Oct-12 03:36:49

Lime juice and bicarb eh? I remember John Diamond listing all the things he'd been recommended to take. That one doesn't ring a bell.
Strength for you and your lovely DS coming, once again, from KL.

cynister Wed 17-Oct-12 03:57:22

Good morning, Trazzle! I am sending tonnes of good wishes your way. I am praying for your little boy. Hope today will be gentle on you both..xx

thewhistler Wed 17-Oct-12 08:21:43

Morning Trazzle, this time a bus is carrying a Splodge.. how will you do those, Just? Can't believe it would be beyond the just powers.

Yes, lime juice for mojitos for you, bicarb for cleaning the fridge or your friend's brain.

Not surprised Ds was worn out.

Thinking of you today. Enjoy the mummy cuddles.

blizy Wed 17-Oct-12 08:25:05

Good morning trazzle, I hope your little man has a better day today. I'm shocked at your friend, some people just don't have a clue!

Chippychop Wed 17-Oct-12 08:27:05

Come on trazzle..., give me that hand... We're off to kick the big c in the ass, clean the fridge with the bicarbonate and use the lime for a mojhito as suggested earlier... Xxxx

Hi Trazzle, I hope you and DS have a better day. Lots of love and light and refreshing sea air from the Sussex coast.

ChippingInLovesAutumn Wed 17-Oct-12 09:31:20

Bicarb & Lime eh - what on earth are all of those researchers wasting their time on then?!

<We need a really good eye roll emoticon!! - This will have to do for now hmm>

His NG tube sounds awful, poor little man sad Have you been able to convince him to leave it where it is & not try to pull it out?

How was his tummy last night? Waitrose do a botty butter that seems quite good for preventing a sore tush and it's nice to apply (well, I can only speak from the applicator end!!).

Any chance of you getting home today?

Lots of love & strength from a sunny Hampshire smile

Hippymama Wed 17-Oct-12 09:32:42

Hello Trazzle, so sorry to read about what your beautiful little boy is going through right now sad

Hugs and a great beam of light coming from north Shropshire xxx

ToffeeWhirl Wed 17-Oct-12 10:04:22

Hope today goes well, Trazzle, and that you get to take DS home.

Astonishingly, there is loads on the internet about baking soda curing cancer hmm. There is even a medical study on it in relation to breast cancer (here). I remain very sceptical, but it does show that at least your friend was trying to be helpful.

ToffeeWhirl Wed 17-Oct-12 10:05:27

Am not condoning her suggestion, by the way!

tholeon Wed 17-Oct-12 10:31:29

Friend sounds pretty dim... Hope you have better real life support, as well as your lovely mum of course?

In north Surrey for light x

Badvoc Wed 17-Oct-12 10:34:37

Thinking of you all xxxx

tholeon Wed 17-Oct-12 10:36:00

Ps i bought a book called what can I do to help by Deborah Hutton when my dad had cancer, for friends and family about how they can help. Might be worth mentioning to people?

pepperrabbit Wed 17-Oct-12 10:41:17

Thinking of you all this morning, another light from sunny NE Hampshire.

ShiftyFades Wed 17-Oct-12 12:53:56

Morning Trazzle and family. Hope you are doing okay today.
hmm at your friend for the inappropriate comments. Even IF it ever turns out to be true, it's not something that should have been said to you. Sounds like she went to the same school of tact as my mum!

THERhubarb Wed 17-Oct-12 14:10:55

The bicarb nonsense was started by a Dr Simoncini who has already been convicted of causing wrongful death and swindling by a judge in Italy.

The idea that cancer is a yeast infection is preposterous.

Keep well Trazzle, there are always nutters around ready to use any situation as a platform for their own silly ideas. Hugs to your dd and ds x

Doobydoo Wed 17-Oct-12 16:11:45

Blimmin heck Trazzle at your so called friend!My friend has Rheumatoid Arthritis and her sister said to just have Milk Thisltle...that will sort ithmm
Hope you all home soon.In my thoughts every day.

dikkertjedap Wed 17-Oct-12 16:50:39

I hope he is feeling a bit better and able to go home today.

How is it going with the NG tube, is your son getting used to it or is he still fighting it? If you need to use the NG tube at home, I know that there is a support thread on Mumsnet in the Special Needs section. I will try to find the link.

Your friend was probably trying to be helpful but unfortunately there are lots of people who don't understand the difference between evidence based medicine and nonsense being peddled.

I hope you all had a better day today and that you can all together have some peace and quiet at home.

You are doing an amazing job, as is your son!

x

dikkertjedap Wed 17-Oct-12 16:52:56
Clumsasaurus Wed 17-Oct-12 17:16:56

Lighting up london for you..

Could I borrow the bicarbonate? I use it to deodorise my DH's trainers!

I hope your DS is hanging in there and giving his fab mummy some smiles when he feels up to it xx

123caughtaflea Wed 17-Oct-12 20:59:11

Thinking of you and adding a new candle flame tonight:

www.gratefulness.org/candles (group = TT)

x

barefootcook Wed 17-Oct-12 21:25:47

Hi there Trazzles- just sending some positive thoughts from Wellington, NZ. Hope your day has been okay and the little guy is feeling a bit more perky.

Badvoc Wed 17-Oct-12 21:34:31

Sending love from rural leicstershire x

whatinthewhatnow Wed 17-Oct-12 21:51:55

hi trazzle, just marking place and hoping you're all doing ok tonight. lime is best in a gin and tonic, quackery is best in the loony bin.

Trazzletoes Wed 17-Oct-12 22:58:01

Well hello! I am typing this while lying in a proper bed with my wonderful DH beside me (tmi!) but this can only mean one thing... We're home!!!

Finally got discharged after 7pm but got DS settled straight in to bed. Managed to set up his pump and overnight feed without waking him up! And administered meds. Soooooo much easier!

DS has just lain in bed all day watching tv. Could barely even crack a smile. His right thumb is totally gross as he's been sucking it near constantly since Friday. As soon as we mentioned going home he was like a different child! Smiling... Talking... He is so beautiful.

Oh and I really love my bed.

Badvoc Wed 17-Oct-12 23:01:06

Wonderful news!
Am so very pleased for you all.
Hope your ds continues to improve now he is home x

Lovely image of a happy DS, hope you all have a good night.

JustSpidero Wed 17-Oct-12 23:02:53

smile glad to see you're home and DS is happier and settled.

Sleep well!

orangina Wed 17-Oct-12 23:14:43

I wish I could press a 'like' button for your last post trazzle..... thinking of you and your lovely ds often. x

onedev Wed 17-Oct-12 23:15:12

So glad you're home.

BarmeeMarmee Wed 17-Oct-12 23:24:27

Fantastic news Trazzle! grin I hope you all have a peaceful night and tomorrow is a good day.

DameFannyGallopsAtaGhost Wed 17-Oct-12 23:55:53

Oh lovely smile

ChippingInLovesAutumn Thu 18-Oct-12 00:05:33

Lovely, lovely news. I hope you are now snuggled up with DH getting some well deserved zzzzzzzzzzzzzzzz's.

I hope DS is feeling much better tomorrow, being home is a tonic of its own! smile

Thumbwitch Thu 18-Oct-12 00:24:24

HUrrah! hope you're all sleeping well just now and that you get some decent rest. x smile

dizzyday07 Thu 18-Oct-12 00:39:08

Hurrah! Here's hoping that being home will give you all the boost you need to keep you going. Cuddles all round x

BuffyFairy Thu 18-Oct-12 00:47:10

Fab news Trazzle! Yay for a happy ds and happy mummy. Glad the ng tube is making things easier.

Hope you have a nice few days at home now.

Love, light and hope xx

barefootcook Thu 18-Oct-12 03:42:21

Wow- lovely news. Hope all the trazzles had a good snooze.

Cadmum Thu 18-Oct-12 04:06:59

Fabulous news! I know what you mean about loving your bed...

elliepac Thu 18-Oct-12 06:53:15

Fantastic news trazzle! hope you all managed a get a good night's rest!

blizy Thu 18-Oct-12 07:04:36

Fantastic news Trazzle!

piratecat Thu 18-Oct-12 07:08:15

hi just found you here. thinking of you and mini boy trazzle xxx

saffronwblue Thu 18-Oct-12 07:18:03

What a lovely post. Hope you are all enjoying being together at home.

dikkertjedap Thu 18-Oct-12 07:57:31

Wonderful news!

x

ShiftyFades Thu 18-Oct-12 08:16:33

Morning, hope you've all had a restful night and that today will be a good one.

Sending you all much love and many hugs xx

gordonpym Thu 18-Oct-12 08:20:06

Soooooo happy for you.

IwishIwasmoreorganised Thu 18-Oct-12 08:23:29

That's great news.

Well done on getting the feeds and meds done.

Hope you all had a great nights sleep
Xx

ripsishere Thu 18-Oct-12 08:27:31

Wooohooo. Great news.
You'll be relieved to know I've lit an incense taper at the Chinese temple, goodness knows what god it is to, but a woman told me if I put a note in a box with some money, the monks/congregation will pray for you.
Consider yourself prayed for.

ripsishere Thu 18-Oct-12 08:28:52

Should be a wink and a hmm after 'you'll be relieved to know.

Just checking in. So pleased you managed to get home smile hope you've had a good night's sleep

strictlycaballine Thu 18-Oct-12 11:03:58

So pleased you got home Trazzles x

BuffyFairy Thu 18-Oct-12 12:49:49

Hope today is a better day and that you're having lovely joint ds and dd snuggles at home.

cedmonds Thu 18-Oct-12 12:52:23

Glad you are home.

ToffeeWhirl Thu 18-Oct-12 13:18:26

Wonderful that you and DS are back home! Hope you have a good day today.

bobkate Thu 18-Oct-12 13:25:57

smile glad you are home and that it brought a smile to your DS's face. Must be extra special to see him smiling at the moment x

Four4me Thu 18-Oct-12 14:07:28

Yeah Mini-Trazzle gets to basecamp!!!!!! Xxx

Sagelyhaunting Thu 18-Oct-12 14:28:15

smile glad you are all home x

RaspberryLemonPavlova Thu 18-Oct-12 19:49:28

A splodge of light from Cumbria, trazzle.

Enjoy your time at home. smile

HedgeHogGroup Thu 18-Oct-12 20:17:46

Hi Trazzle, I've been following your thread since last week and thought I'd give Spiro a job adding a splodge from Liverpool.
I can't imagine what you're going through but hope you know that the thoughts (and prayers) of people around the world will see you through.

Good luck xxxx

thewhistler Thu 18-Oct-12 20:22:06

Glad you both got home and hope it is doing you a power of good.

Milliways Thu 18-Oct-12 20:25:11

I have been lurking and praying here, but today I saw a friends FB status that I had to share with you. A little boy just given the all clear from Stage 4 Neuroblastoma diagnosed in 2011

here is his FB page

Clara35 Thu 18-Oct-12 20:27:55

Hi Trazzle, I have been following your threads & wanted to send a splodge of light from Belfast. Hope you had a peaceful day at home xoxo

DawnOfTheDee Thu 18-Oct-12 20:35:53

Just found the new thread yes I'm a bit slow... Big fat splodge here in Leeds.

Glad to hear you're all home - it makes such a big difference doesn't it?

Btw, tell your friend that if you mix 5 tbsp mustard, 2 raw eggs, some prune juice, 3 anchovies and a big dollop of curry sauce together then down it it'll instantly stop you being an insensitive arsehole. Fact.

DawnOfTheDee Thu 18-Oct-12 20:36:33

Big fat splodge of light I meant. Though looking at me it's an easy mistake to make..... grin

Trazzletoes Thu 18-Oct-12 20:49:34

Oh Dawn, you dafty :D

Thanks for all the positive stories of children beating this bastard disease. They have such strength.

DS has had an ok day - very tired and lethargic. I may call the hospital in the morning if he hasn't perked up to see whether they checked for anaemia before he was discharged...

I'm getting word perfect on The Lion King, but I used to work at The Disney Store so it's not exactly torture for me! We got some smiles and the occasional laugh out of him today which was just wonderful. I was reading a book to him to help children understand cancer (thanks Rhubarb) and the little boy lost his hair. I asked DS how he would feel if he lost his hair and he said it would make him very sad <cries>. I need to get on with learning to crochet so I can make him some funky-ass hats!

At least I've been able to give him his meds through his ng tube which is a squazillion times easier than previously.

He's normally very much a daddy's boy but has latched on to me these past few days, which is lovely for me but tough going for DH who can barely get a hug at the moment, let alone a bedtime story sad.

Buffy twas a v good plan but I dropped Dd's last feed just after the diagnosis because I couldn't guarantee being around to feed her with any regularity. Yes, he can eat solids, but at the moment the tube makes him cough and sneeze (which he says hurts) when he has anything substantial. Ta also for the offer of the console but DH also has an old one - DS currently doesnt have the co-ordination to manage one :D

Sirzy Thu 18-Oct-12 20:52:25

Trazzle - if you want hats making then put a shout out to MNers! I can't help because my attempts at hats would probably end up as scarves but I am sure plenty will be willing to make some funky-ass hats for him!

Trazzletoes Thu 18-Oct-12 20:54:13

Oh, and there has been good news today too. A friend's brother fell down a flight of stairs 4 years ago and damaged his spinal cord. He lost all use of his legs and hands. It was fairly unlikely he would ever regain use of his limbs. He seems to be fairly bloody-minded and determined though, and this week my friend posted a video of him walking across a room with help. They are the first steps he has taken in 4 years. He is awesome.

It's reminded me that incredible things do happen. Anything is possible.

Trazzletoes Thu 18-Oct-12 20:56:17

Honestly, sirzy the MN community has already been very extremely generous to us Trazzles. I couldnt/ wouldn't ask for anything more.

IwishIwasmoreorganised Thu 18-Oct-12 21:06:07

What great news about your friends brother.

Amazing things can and do happen. This is perfect timing to remind us all of that.

Please do ask Trazzle for anything that anyone might be able to help with while you are all fighting this. I'm not able to produce anything anywhere near a funky hat, but would live to help in any other way that I might be able to - postcard or present to your ds or your dd, practical help like a supermarket delivery, whatever.

Please do just ask, there's lots of us out here to share things out amongst.

Xx

If tiddlytrazzle's hair DOES go...you can guarantee a lorry load of amazing hats will be coming your way.
I am thinking Viking, lumberjack, cowboy, beanie, beret, rasta the list is looooooong and jolly.
Stephen Fry calls them a 'head joy' smile

You are sounding so strong and positive, but you do know you are allowed to sound pissed off as well? We will still hold your hand.

Love and light xxxxx

Trazzletoes Thu 18-Oct-12 21:59:52

Norks it is definitely going. 100% certain. They use SERIOUS drugs against this shit. He WILL be sterile. He WILL lose his hair and his bone marrow WILL be destroyed.

Hearing loss, kidney and heart damage are possibilities.

Believe me, I am angry.

thewhistler Thu 18-Oct-12 22:00:50

Lots if people would love to do hats, of all sorts. I'm hopeless but can just about do a beanie. Having fun soft hats to choose from might be good. A friend says soft is really important. Silk Pirate bandanas could be a possibility.

JustSpidero Thu 18-Oct-12 22:10:45

Debenhams have a lovely soft Gruffalo hat and mittens set at the moment if he's a fan of the books.

123caughtaflea Thu 18-Oct-12 22:20:13

Trazzle, you are allowed to be angry. Please be angry.

I have lit a candle for justified anger tonight . . . not sure it makes sense, but there you are:

www.gratefulness.org/candles (group = TT)

KnottyLocks Thu 18-Oct-12 22:25:21

Checking in with a splodge.

We have a woolly army, my lovely.

Hats are no problem at all smile

Trazzletoes Thu 18-Oct-12 22:30:01

Just I've found and when I've finished my online food shop I'm ordering it! Beautiful!

123 I am angry but if I let myself give in to it, I will go completely to pieces. I can't let myself go or I will be so broken that I won't be able to put myself back together and then what good will I be to DS?

Trazzletoes Thu 18-Oct-12 22:59:38

Ordered them <squeeeeeee> hope he loves them as much as I think he will... he ADORES the Gruffalo... will need to catch him while he is in the right mood, I think... too excited!

onedev Fri 19-Oct-12 06:19:46

Gruffalo is ace, I'm sure he'll love them smile

thewhistler Fri 19-Oct-12 07:11:08

Really hope he loves them.

Really sorry too about the implications. In a more minor way have been through this with our Ds and some of the long term issues are the same. And completely agree that you feel you can't let a chink in, because the structure will disintegrate. But it means that you need to cherish yourself more, iyswim, to keep things going and maintain that precarious balance.

Hope today is a good one.

crashdoll Fri 19-Oct-12 08:03:32

Trazzle, I have been following your threads and I just wanted to be another friendly face screen name sending love. I'd love to send both your mini-Trazzles a little something if you feel comfortable sending your address but obviously, I completely understand if you don't. Also, wondered if you'd heard of www.postpals.co.uk DS and DD can get sent cards and gifts and you don't have to give your home addy either. Another thing is, have you heard of wiggly bags? There's a group on FB who make bags for the tubes from the line in the chest and the bottom of the NG tube to go in. Anyway, hope today is kind to you and the rest of the Trazzles. All the best! x

Engelsemama Fri 19-Oct-12 08:10:26

Just checking in to let you know am thinking of you trazzle. x

checking in. Wish this was over and your boy was home for good. Glad he's home for now.

ShiftyFades Fri 19-Oct-12 09:06:31

Morning Trazzle, glad you got the Gruffalo set. My DS loves it too, think I shall have to check it out too.

I understand what you are saying about the anger, the fear of losing it completely sad
Your strength is amazing and mini T is so lucky to have such a fantastic family to support him through this fight.
Sending you all my spare energy, love and determination so you have extra to call upon.
Xxx

ChippingInLovesAutumn Fri 19-Oct-12 09:25:21

Great news about your friends brother, I hope he goes from strength to strength.

How has DS been sleeping? How is he today?

I know what you mean about not giving in to the anger/sadness/grief etc as you feel like you wont be able to put yourself back together - but you need to be careful, bottling it all up can be disasterous too - your DH, your friends and all of your MN friends will glue you back together when you feel able to let it all go x

Sending lots of love & strength
xxx

THERhubarb Fri 19-Oct-12 09:58:36

This is such a horrible and cruel thing to happen! I just keep looking at my own son Trazzle and I can almost feel your pain. sad

But you are an inspiration. You have not dwelt on the sadness but have just picked yourself up and got on with it. I'm sure I'm not the only one to say that I have been watching your threads now with pure amazement at your courage and selfless attitude. You are extraordinary.

Thinking of you and your little man always.

BuffyFairy Fri 19-Oct-12 11:30:32

Oh Trazzle [hugs]. I'll second what Rhubarb says as she puts it so eloquently.

tholeon Fri 19-Oct-12 11:33:30

Do they offer counselling for parents in your position at the hospital? I would have thought a safe space where you felt you could give way to letting go might be useful, sometimes...

So glad he is home, much nicer for you all xx

JustSpidero Fri 19-Oct-12 12:49:21

Latest maps UK and world smile.

Hope your little man is doing ok today and that he likes his Gruffalo hat when he gets it.

desertgirl Fri 19-Oct-12 18:38:06

JustSpidero, there were several of us (in the earlier thread, not 100% sure about this one as haven't been keeping up properly) making splodges of light from Dubai, but it's not lit on the map??

Anyway here's a light shining brightly in Dubai for mini trazzle and all the trazzles. xx

JustSpidero Fri 19-Oct-12 19:09:03

I may have a made a rough guess as to where Dubai is and got it horribly wrong blush will make sure to add some Dubai splodges v. soon!

desertgirl Fri 19-Oct-12 19:37:33

Ah ok fair enough!! sorry, am very impressed that you produced the maps at all and wasn't meaning to make you blush

JustSpidero Fri 19-Oct-12 20:14:35

S'alright - I was doing it just before the school run so guessed and plonked you in the middle of Saudi Arabia!

All fixed! grin

FourEyesGold Fri 19-Oct-12 20:59:14

Couldn't read all 47 pages and then not post. Just another Sheffielder sending lots of love and support to you, your lovely DCs, your DH and absolutely fab-sounding DM!

Goldenjubilee10 Fri 19-Oct-12 21:17:49

Another splodge of light from Inverness. Wishing you all the best.

chocolateistheenemy Fri 19-Oct-12 22:05:52

I wish, pray and hope for nothing but good things for you all. I can't say anything more because it is so bloody shocking.

Trazzletoes Fri 19-Oct-12 22:12:33

47 pages at once?! You are hardcore!

I don't think anyone has mentioned counsellors... But I'd be surprised if there weren't any at all...

DS started off the day very lethargic again but around tea-time he really rallied and suddenly burst in to song!!! He rarely sings anyway, so that was brilliant! We took lots of pictures and videos of him being funny. We watched Sleeping Beauty and he had me in stitches trying to say Maleficent. Bless his cottons.

Tomorrow we have yet another lazy day but I have to call BA to cancel our just-booked flights for holiday2013 sad. We hadn't bought any insurance yet (had literally bought the flights a week before this all started) so its not a conversation I'm looking forward to!

Really pleased with DS so far though.

calypso2008 Fri 19-Oct-12 22:29:27

Thinking of you and DS every day Trazzle, sounds like your son has inherited your strength and some, lovely he is singing.

JustSpidero those maps are amazing!

thewhistler Sat 20-Oct-12 06:03:16

Trazzle, enjoy your lazy day and good luck with BA.

Love the Sleeping Beauty scenario.

Good morning trazzletoes and the rest of the trazzlefoot
If you want help with BA, DO employ the might of MN...maybe start another thread.
Loads of people will pile in to offer advice and practical help.

Let's hope tiddlytrazzle keeps singing today.

Love and light x

barefootcook Sat 20-Oct-12 08:16:30

Good morning Trazzles-hope the energy surge continues for Mini Trazzle. Good luck with the BA. Just Spidero-how do I get on the map? I notice there are 4 kiwis there already-which is great.

Trazzletoes Sat 20-Oct-12 09:15:47

Hi, DS had a good night and is currently watching Sleeping Beauty (again!) but is sat on the sofa, rather than lounging disinterestedly. He was sick as soon as he got up this morning but think that is to be expected as we increase his feeds overnight.

Just as an aside, it's DH's birthday shortly. I was thinking about getting him some fingerprint or handprint cufflinks. I know they're a bit twee, but thought they might be nice. Does anyone have any companies that they can recommend or to avoid?

Thanks.

blizy Sat 20-Oct-12 09:37:10

Trazzle, I'm glad ds had a good night. I bought Dh some footprint cuff links for our wedding day, I used a company called pickled pumpkin (sorry, I can't link from my phone) they were fab.

pinkpinkeverywhere Sat 20-Oct-12 10:00:07

Hi, I've been lurking and wish you and your family every ounce of support I have.
I know of a company called Smallprint who do this jewellery. I think they are nationwide maybe on a franchise basis?
Best of wishes and a splodge of light from South Leicestershire.

ChippingInLovesAutumn Sat 20-Oct-12 11:43:55

How lovely that DS perked up yesterday and you got some lovely videos & photos smile

This might sound a bit odd, but bare with me. We took photos of my godson from the beginning all the way through, we thought that it was better to take them & never look at them again, than it was not to have taken them. As we went, I made up an album - there are some truely dire photos in there, but he looks at it now & he's pleased to have it. I think he feels it's validation of what he went through, but only remembers bits of, and in a strange way it makes him appreciate how well he is now. I don't know how else to explain it and you might think it's a horrible idea - but I just thought I'd mention it.

The footprint cuffs are a great idea - surprisingly easy & fun to do with a great result. I'm sorry, I can't remember the name of the company we used.

I hope you all have another good day
x

ShiftyFades Sat 20-Oct-12 14:42:11

Trazzle it's lovely to hear that you are having some fun together.

For DH's first fathers day I took James to a local "paint your own pottery" shop and did a hand print and foot print into a plate which was then glazed.

It was lovely and hangs, pride of place, in our hall.
I did ones for godparents on his christening day. One of my friends was so overwhelmed that she cried buckets blush
I wrote appropriate words on them too, they had special, fine, paints to do this.

Worth looking into so you can all share the memory xxx

ToffeeWhirl Sat 20-Oct-12 17:34:50

I'm glad your DS had a good night and has been enjoying watching telly. I hope he has another good sleep tonight.

And good luck with BA.

Badvoc Sat 20-Oct-12 17:58:46

Lovely news.
Thinking of you all here in Leicestershire xxxx

Leoboy Sat 20-Oct-12 19:25:58

Fingerprint jewellery do cuff links, they also do something called little Picasso where your DS could draw a little picture, a smiley face or something and they put it on a key ring or necklace, not sure about cuff links though. He maybe a bit young to do that though?

IwishIwasmoreorganised Sat 20-Oct-12 19:48:54

We used Smallprint too.

Our local lady was excellent and the necklace that we had made really is lovely. I have one of each ds's fingerprints on each side of it.

I think it's a great idea.

Thelobsterswife Sat 20-Oct-12 20:03:05

Posted on other thread but didn't give location. Splodge of light from Northampton. Lighting a candle now. Glad Mini Trazzle has been on good form. Xxx

ComeIntoTheSpookyGardenMaud Sat 20-Oct-12 20:03:17

Bit late to join the thread, but sending light from sarf London.

focuson Sat 20-Oct-12 22:26:20

Trazzle, wee trazelle and co my heart and wishes and a Candle burning bright from hackney east Londonxxx

Trazzletoes Sat 20-Oct-12 22:42:03

Thanks all - today has again been a better day. Each day brings a gradual improvement, which is good for all our spirits. This morning he finally got off the sofa and was playing with DH - fighting me off with his toy saw and chasing me around the kitchen! He tired himself out and had to recharge his batteries, but that's to be expected. As the chemo fades in to the distance and his nightly feeds are increasing, he's coming back in to his own a little bit and we are getting his character poking through again. I hadn't realised quite how much I missed him.

The feeds are going well - can't remember whether I've already mentioned he was sick this morning, but he rallied straight away and fortunately his ng tube stayed put - I'm terrified of him vomming it up!

He even made our pudding tonight - banoffee pie. It was yum and he managed a couple of mouthfuls. It's lovely to see his cheeky grin...

As for BA. Well. I guess that they get calls like mine a lot, but it's really not nice to have someone bluntly say: well, you should have bought travel insurance then, shouldn't you? When I pointed out that we'd been saving for the flights and didn't have the spare cash to buy the travel insurance there and then I would have thought that they could have come up with a more compassionate response than: well, these things are usually bought at the same time.

Anyway, having got nowhere at all with BA - their offer is to refund a little bit of the tax so we basically get back a quarter of what we paid for the flights because we bought non-refundable tickets. I know, I know, don't say it...

They suggested I speak to my credit card provider who politely informed me that I should have bought travel insurance. NO S**T!

Was just about to call BA back and beg and beg whilst pointing out that they have 8 MONTHS in which to resell our seats... when DH (may the odds be ever in his favour) suddenly remembered that we have a silly bank account that we have to pay for (it gets us money off our life insurance) that also came with... wait for it... TRAVEL INSURANCE! WHOOP WHOOP! Quick call to them - yes, we would be covered if our GP confirms that treatment will be ongoing next summer and DS can't travel...

Thank God for stupid bank accounts that come with daft extras that you never use grin. I pretty much cried with happiness. This is what my life has become! Tears because we haven't actually lost our savings for the past year or so. Not sure how we are going to break it to DS that he isn't going to go on a fast aeroplane to visit his Uncle, Aunt and Cousin next year though. He is SO excited. We live by an airport so he sees the planes constantly and is always going on about it. Maybe if we just ignore it, it might go away? It's a long time away, right?!

Oh, and DS' Little Hug arrived today. It's beautiful. He loves it. Every time he sits on the sofa (a lot!) he asks for it. It's perfect.

123caughtaflea Sat 20-Oct-12 22:52:25

Sending light to the good times . . . may the improvement continue.

www.gratefulness.org/candles (group = TT)

THERhubarb Sat 20-Oct-12 22:56:05

Sending virtual hugs to you all. I only wish I had a magic wand xxx

What a relief about the insurance. I'm glad DS has perked up a bit this last couple of days it must do him the world of good having some time to just be normal in between treatments. I saw the Little hug photo on the Woolyhugs facebook page, that is something to treasure. Hope you all have a good night and a nice day tomorrow.

BuffyFairy Sat 20-Oct-12 23:18:43

I'm so happy you've had a lovely day and that ds' cheeky spirit is coming back.

I saw his little hug on the Facebook page too and it's gorgeous.

Great news about the insurance. It's the only reason I pay for my bank a/c. Any chance they could visit the uk? You could take ds on a simulator flight or is he not as gullible as I was?

<says the child who believed she had gone to the moon>

I know it's not the same by far.

Don't use silver imprints. I had to wait ages and then they sent the wrong order. It's a lovely idea.

ToffeeWhirl Sat 20-Oct-12 23:53:56

Can't believe BA are so heartless (well, actually, I can), but hurray for bank accounts with extras! I'm so pleased MiniTrazzle had such a good day today and even managed some banoffee pie.

Chippychop Sun 21-Oct-12 00:58:41

Glad there is some positive rays shining on you, you can have all my rainbows and pots of gold as long as mini trazzle continues to smile xxx

ChippingInLovesAutumn Sun 21-Oct-12 01:09:30

Heartless bastards aren't they angry It's not as though they'd even be losing any money this far in advance. I could even understand them asking you for a Drs letter or whatever, but a flat out 'tough shit' is just crap.

I'm pleased that your 'stupid' bank account has earned itself some gold stars & you will get your refund! If you possibly can, lock it up in an investment so it's there when DS is up to travelling and you can go at the drop of a hat then smile

It's great that DS is getting some of his energy back and seeming more himself smile

I wouldn't tell him you have cancelled it, let him carry on believing it's all going ahead - he's too young to understand how long he might be unwell for and it's not something he needs to think about anyway. When the time comes he'll either be unwell due to the treatment and will understand why you can't go right now, or he'll be well enough to travel and you can re-book. No point in upsetting him over it at the moment. Put it in the Santa Claus/Tooth Fairy 'nice lies' box x

MacAndCheese Sun 21-Oct-12 01:23:36

Hello trazzle I've been lurking but send my best wishes & lots of positive thoughts your way for all of you. smile

thanks

I noticed up thread that you said Mini Trazzle likes the Gruffalo? I found this just now. I thought you might like to take a look. Not particularly helpful, but there are lots of things on there your DS might like. I quite like the socks! blush

Trazzletoes Sun 21-Oct-12 04:07:43

Ugh. DS has had an unsettled night so far, culminating in throwing up twice so he has no benefit of his night feed tomorrow. He is literally skin and bone already. I'm so scared.

We've also run out of bedding for him, but that's ok because when we put him down this time, he demanded his Little Hug instead of his duvet. It was so wonderful to see him wrapped up in it.

Can't sleep though for worrying how we can get him to put on weight if he can't keep his night feeds down.

I'm starting to wobble a little bit.

I'm scared. Really really scared.

BarmeeMarmee Sun 21-Oct-12 06:07:06

Trazzle you are allowed to wobble and be scared-you wouldn't be human if you didn't. Sorry to hear mini trazzle has been unsettled-has he settled now? Hopefully so and you are all getting some rest. There are bound to be some times when he's sick and can't tolerate his food but the hospital should be able to monitor/advise. And he had such a lovely time today from what you said! Hopefully it's a "blip" and tomorrow will be good too and he'll be back to tolerating his foods again.

Sending you all unmumsnetty hugs through the dark, my splodge of light is shining brightly for you.

tholeon Sun 21-Oct-12 06:30:24

You poor thing, four am is a horrible time to be awake, thinking scary thoughts.

How was the rest if your night?

You are allowed to wobble and will need to, sometimes.

Re the big aeroplane ride, that is sad, but he is a little boy, and perhaps there are other more local, lovely treats that would also make him happy.
Virtual hug x

gordonpym Sun 21-Oct-12 06:34:46

I know, Trazzle. It's normal to be. But the weight will come back, then go and come back. I remember my friend's DD being so skinny she looked like a little bird, and now six years later, she's tall and so beautiful. You would never tell. It's a long and horrible road to recovery. But you're proving to be such a wonderful mother and together you'll get trough.
And don't worry about the cancelled (and refunded ) trip, there will be others and they'll have an added flavor! Focus on them. And Mini-Trazzle can understand. It may even be a goal. "We have to get rid of that illness, we have plans".
You can't travel now, but we, Mumsnetter spread around the world or England" , could send you postcards you could pin to the wall, and then play games with your lovely DS. PM me if you think it may help.
A big hug from Barcelona (pouring rain this morning!!)

SarahJinx Sun 21-Oct-12 07:20:15

Hi Trazzles, a bit of a sleepy splodge of light from the fens here for you and your beautiful boy.

Love to think of him wearing a hug, don't forget that you're wearing a hug too, we're here whenever you need.

notonthehighstreet.com do loads of beautiful things, including fingerprint jewellery and other lovely personalised stuff.

Badvoc Sun 21-Oct-12 08:33:43

Sorry to hear minit has been ill during the night...glad he is snuggled up now.
4am is a bitch.
Remember...at 4am everything is scary!
Thinking of you and praying for you all xxxx

ChippingInLovesAutumn Sun 21-Oct-12 09:44:27

Oh my love, it is utterly miserable all around isn't it sad It is horrible being woken in the night at times like this as going back to sleep is so difficult, your mind just goes around and around. As Badvoc said - 4am is a bitch! & everything is even more scary.

MiniT's feeds are dense, the odd night of them not staying down is horrible for him (& you) but he will still be getting so much from the other nights.

I hope you have a nice day today
x

((Trazzle))

thewhistler Sun 21-Oct-12 11:52:26

Hugs to you and Trazzleminor.

The three o'clock and four o'clock blues are well known. Nothing looks possible then. And you have so much to put up with. You'd be mad not to be upset.

But I would have thought that the feeds so far have been helping to improve underlying stamina. The example if the girl above sounds lovely.

Thinking of you.

ToffeeWhirl Sun 21-Oct-12 11:57:07

I can't add to the wise counsel here, so am just sending you another virtual hug. I hope today is better.

strictlycaballine Sun 21-Oct-12 21:36:22

Sorry you both had a debilitating night Trazzles 4am watch is the toughest. Hope tonight is better. Wishing you continued strength for the week ahead x

ShiftyFades Sun 21-Oct-12 21:48:46

Hope your day has been better. Sending you the biggest hug on the Internet.

Always here for you, always thinking of you all xxx

Trazzletoes Sun 21-Oct-12 21:57:31

Thanks all. DS has been brighter still today. That is, until he totally missed his nap time and turned in to a pre-school terror. Hell hath no fury like a hungry and tired 3 year old who won't eat or sleep.

It is so hard to discipline him at the moment, but the tv is off tomorrow (a rod for my own back apparently!) because he spent approx 4 hours (no kidding!) SCREAMING at me. He has eaten at mealtimes which again is something. He's back on the feed tonight but we've reduced the level and given him some anti-sickness meds. Cross your fingers!

Off to hospital tomorrow for a kidney function test. I'm feeling organised because my bag of goodies is already packed! grin this is a first!

Buffy hope the nursing strike is over.

VenetiaLanyon Sun 21-Oct-12 22:07:06

Glad to hear that you and DS had a brighter day, and hoping he has a better night x

Badvoc Sun 21-Oct-12 22:46:12

So pleased to hear he has had a better day smile
Have been thinking of you all today.
My ds1 and i lit candle for your ds at church today, I hope you don't mind?
No TV?
Blimey, you are even braver than I thought! smile
Hope tomorrow goes well x

onedev Sun 21-Oct-12 22:47:50

Glad to hear he's had a brighter day. Hope you all get a good nights sleep & all the very best for tomorrow.

CharlieBoo Sun 21-Oct-12 22:58:15

I hope you have a better night... X

ChippingInLovesAutumn Sun 21-Oct-12 23:03:12

No TV? That sounds much more like a punishment for you, not him shock
I'd let him 'earn it back'... very easily!!

It is really hard to discipline them when they are this ill (and upset/scared/unsettled) and you do have to let a lot go, but you do have to draw the line for his sake and yours - and I have no doubt that your 'line' is drawn in a very appropriate place x

It's good he's been eating again (more that it shows he's feeling 'ok' than for the actual food really).

Fingers crossed for tomorrow smile & for a decent nights sleep for you all
x

ToffeeWhirl Sun 21-Oct-12 23:34:15

Sorry for your difficult day after an already difficult night, Trazzle. It must be so, so hard to discipline in these circumstances. I like Chipping's idea re the TV punishment of letting your DS "earn it back" again - perhaps for being well behaved for the kidney test?

Crossing my fingers for a good night for you and MiniT tonight.

Trazzletoes Mon 22-Oct-12 06:26:38

No idea whether he'll be sick this morning, but he was chipper when he called me in an hour ago to point out that, at bedtime, I'd forgotten to do piggy supermarket (or: this little piggy went to market!) on his toes like I'd promised grin. Also he remembered we're off to hospital today and that it's not going to hurt <phew>.

Hope you have also had nice sleeps.

Trazzletoes Mon 22-Oct-12 06:28:35

Oh, and tv punishment was, unsurprisingly, DH's idea. He just came out with it and then it couldn't be unsaid.

Think I will modify it to: no children's tv before we go to hospital. I can't stop him watching it while we're there anyway!

Good morning trazzletoes and tiddlytrazzle

Am pleased to see that tt has a strong sense of justice. The omission of pig related tickling games is seriously contravening his toddler rights. smile

Hope you have a successful day.

pinkbraces Mon 22-Oct-12 09:42:52

Good morning Trazzle family,

occasional poster here, I hope it goes well today, sending you a big splodge from the grey skies of Manchester x

THERhubarb Mon 22-Oct-12 10:00:58

Still splodging light here in Wiltshire too x

ShiftyFades Mon 22-Oct-12 11:04:25

Hope the kidney function test goes well.

Sorry to hear that yesterday was a bad day, I find it hard to discipline my DS because he's just so cute, I'd be flipping useless if he were ill!! blush

Earning back the TV is an excellent idea grin

Splodge of light from Cambridge here and hope the kidney function test goes well today x

dikkertjedap Mon 22-Oct-12 13:58:02

Hope all goes well with the kidney function test today. Very good that Mini Trazzle has been eating a bit and insist on his tickling rights! grin

Very tough for you that you have had such disruptive nights.

I also wouldn't ban TV totally, maybe try to limit it a bit or stick to DVDs so you have a good idea what he is watching and it is not too hyper.

thewhistler Mon 22-Oct-12 19:01:53

Trazzle, hope it went as well as it possibly could.

Fabulous he had enough energy to scream, for four hours! It's only when people start to feel v slightly better they get grumpy. So the feeding must be giving him energy.

Agree hoe difficult it is to maintain discipline. But you won't need to normally, he will be fine. It's fear of the jnknoen

thewhistler Mon 22-Oct-12 19:03:02

Unknown. Sorry, on phone. The jnknoen is indeed scary.

Trazzletoes Mon 22-Oct-12 23:20:12

Results outstanding on kidney function test. However DS' potassium levels were low so he has been kept in overnight. DH is with him.

I found an information leaflet the consultant had given us and decided to read it. Big fucking mistake.

I've been studiously avoiding survival rates and there it is, in my face, in black and white. 35%. Without factoring in the likelihood of a relapse. Which is incurable. And highly likely. 35% fucking percent chance that my beautiful boy will have a first day at school. Shit do we need a miracle.

I can hardly breathe I'm crying so hard. Today he was asking why his tummy hurt and I was explaining about the tumour. He told me to just take it out and make him better. I can't. I can't protect him. I'm his mummy. Protection is what I should fucking specialise in ffs.

I'm trying to put on a brave face and tell myself that someone has to be the lucky one. That there ARE success stories. That he is this special, he can be even more special and get through this.

This is the absolute worst I have ever felt in my entire life, without question.

35 fucking percent.

And his hair has started to fall out.

BASTARD BASTARD FUCKING CANCER. I FUCKING HATE YOU!

MacAndCheese Mon 22-Oct-12 23:23:15

Oh Trazzle

I have nothing to say, except if you want to rant, we're here. And we'll continue to be here.

((hugs))

hellhasnofurylikeahungrywoman Mon 22-Oct-12 23:23:19

Nothing I can say will make it better and I am so, so sorry you are having to go through this but you are doing your very best for your little boy. None of this is your fault. Sending a huge hug and a big splodge of light tonight.

So sorry here too, words are hard to find, but please know that there are such a lot of people out there thinking about you and praying for the best outcome. XXX

dikkertjedap Mon 22-Oct-12 23:28:29

Oh Trazzle, that is so awful. I just have no words for it.

The only thing I imagine to focus on is that 65% do survive and we all have to believe that your boy is one of those 65%. And yes, there are lots of success stories and treatment does keep improving.

It must be so hard to explain to him what is going on and why he is feeling so rotten. Can they not give him more medication so he doesn't feel the pain?

Good news about the kidney test though.

Let me know if there is anything I can do please.

Lots of hugs.
x

Trazzletoes Mon 22-Oct-12 23:34:58

No Dikkert. 65% die. 35% survive.

dikkertjedap Mon 22-Oct-12 23:47:33

OMG, I am so so sorry.

Your son has to be in the 35%, the doctors will be doing everything they can, he is doing everything he can, you and your family are doing everything you can.

Hugs.
x

toomuch2young Mon 22-Oct-12 23:52:07

No words on a screen or indeed in person will take even an ounce of your pain away. But if only prayers and thoughts were enough your little boy would be better tomorrow.
We will be here throughout the journey and as previously said if their is anything that could send to bring even the smallest smile to miniT then message me.
Wish was something that we could do.
Hope your getting plenty of RL support xx

saffronwblue Mon 22-Oct-12 23:59:24

Thinking of you trazzle and all your family. Statistics are awful to think about. All you can do is keep being the most loving mother in the world to your little boy. Virtual hug.

Your thoughts on cancer are echoed by so many of us. You just said it more eloquently!

We're all here for you and will do anything within our power to help. xx

HairyPotter Tue 23-Oct-12 00:18:51

I am so very sorry. There are no words sad

I wish there was something we could do to help. I can offer a hand to hold and a splodge of light from South Lanarkshire.

If there is anything else, please let me know. Would honestly love to send a wee something in the post for him to open.

Hugs xx

ToffeeWhirl Tue 23-Oct-12 00:41:49

I'm so sorry, Trazzle. So, so sorry. Try to focus on how much MiniT has in his favour, if you can - a dedicated medical team and a loving family. He has an excellent chance of being one of the 35%.

bonnieslilsister Tue 23-Oct-12 00:42:01

Oh Trazzle I am so so sorry. We are all sending you so much love and strength xxx

Thumbwitch Tue 23-Oct-12 02:55:53

Ah Trazzle, I have tears in my eyes just reading your posts there - your pain is utterly palpable and completely understandable. (((hugs))) and I have everything crossed that he will be in the 35%.
I just wish there was more that we could do for you and miniTrazzle.

BarmeeMarmee Tue 23-Oct-12 03:38:03

Oh Trazzle I'm so sorry. Echoing what has been said already that LittleTrazzle HAS to be in that 35%. As terrifying a statistic as that is, remember it is just that - a statistic written on a piece of paper, nothing more. Easier said than done I know. Thinking of you all. Splodging away still in Bucks.

barefootcook Tue 23-Oct-12 04:21:18

Hi there Trazzle-I'm sorry you are so down. Someone has to be that 35%group and our Mini Trazzle will be in there boots and all. I have a good feeling about it! We are praying for you all. I know that you probably don't want his name on this board but if there is anyway you can get his first name to me I can get our whole congregation and 500 boys on the case! If not, will just go with Mini Trazzle- no problem at all.

gordonpym Tue 23-Oct-12 06:08:09

Yes , it's a f$%& hideous bastard. But Mini-Trazzle starts his war at 100%. He is unique, and he may not have many of all the characteristics used for the stat. Age, background, etc.... These stats are general. Nobody can tell you what his chances are, and they may well be wrong. My very best friend's DD was diagnosed with a rare form of Leukemia and given less than 5% of chances of surviving. More than six years ago. And you should look at her, now. Running with my kids on the beach chasing them. They just don't know.
And Mini-Trazzle is not alone. He has a great family there, best medical treatment available, and lots of people ready to fight for him and with him. So throw the leaflet away, it's not describing your son.
It's a long and hard road. You help your son during the day and we MNetters will help you during the night.
Hair falling is quite distressing but it proves the meds are working.
Big hug

Fivemoreminutesmummy Tue 23-Oct-12 06:30:23

I'm so sorry to hear that, mini trazzle is in all our thoughts and prayers. Could you have a chat with the consultant about your DS's specifics as survival is hugely influenced by cell type within the tumour and response to treatment? I know that might be scary but it may also give you more information to deal and work with.
Will be sending you positive thoughts and a big hug.

thewhistler Tue 23-Oct-12 07:40:28

Trazzle, I'm so sorry.

All love and prayers and hugs and light Splodge to you and little one.

ShiftyFades Tue 23-Oct-12 07:43:07

trazzle sad
I wish I could take away your pain, those stats are horrid and should be chucked in the bin.
Your DS has everything he needs to fight this, most importantly he has the best mummy in the world fighting for him.
You are amazing and cancer is a fucking bastard, it's evil, it's rotten. You will win this fight Trazzle.

We are all here for you and mini T, through the good times and the bad.

Sending you so much love and hugs for your whole family, I am constantly thinking of you all xxxx

Badvoc Tue 23-Oct-12 08:05:01

Trazzle.
My youngest son is only a little older than your ds.
I look at him and think of your precious boy.
I look at him and am angry that anyone has to endure what he and you are going through.
I look at him and try to imagine what you must be feeling and cannot.
Life is unbearably cruel at times.
I wish I had any words of comfort for you.
All I can say is grasp the positives...his kidney function was outstanding...that's great.
Your are all in my thoughts and prayers x

CelticPromise Tue 23-Oct-12 08:19:01

Thinking of you Trazzle. My DS was very premature and given a 10-15% chance of survival. He's just started pre school. Someone has to be in the 35%.

Have asked my mum to put a word in for your little boy.

VenetiaLanyon Tue 23-Oct-12 09:37:24

Like Celtic Promise said - someone has to be in the 35%. Will hope against hope that it's your DS. Take care.

THERhubarb Tue 23-Oct-12 10:41:20

Trazzle, hold onto the positives. You had an outstanding result on his kidney tests, his potassium levels are bound to be low with the treatment, but he is strong and the cancer is being blasted at the moment. With every day that he goes in, it's another day that the cancer cells are zapped.

The hair will grow back but the hope is that the cancer will be gone forever. So keep holding onto those positives, to the fact that he is responding to treatment. Miracles happen every single day and you have to look at those statistics in more detail - how many of those include very young babies? How many include children who had underlying illnesses to cope with too? Your boy has a fighting chance. People have survived worse odds.

Take every day as it comes and focus only on the positives. Every day the tumour is being attacked. Every day it is hopefully getting smaller. Every day is another day closer to the end of chemo and another day closer to recovery.

We are all sending you so much love x

ShiftyFades Tue 23-Oct-12 10:48:15

I read "outstanding" to mean "still outstanding / not back yet" blush

dizzyday07 Tue 23-Oct-12 10:51:52

Trazzle - Statistics are like CRB checks - only valid on the day they are produced! Those figures could have been from 1, 2, 5, 10 years ago. With every case the doctors treat their knowledge of this awful disease gets a tiny bit better so helping to shift the balance of statistics more favourably for everyone.

Trazzletoes Tue 23-Oct-12 11:02:46

shifty you're right blush. Not at work for 10 months and I'm still talking like a solicitor grin

moajab Tue 23-Oct-12 11:39:13

Ignore those statistics. Just remember that everyone is 100% trying to make him better. Will be thinking of you all. xxx

ChippingInLovesAutumn Tue 23-Oct-12 11:58:40

Trazzle - I missed your post last night, I'm sorry not to have been there when you were feeling so incredibly shit sad I would like to reiterate what Gordonpym said (and I quote) Yes, it's a f$%& hideous bastard. But Mini-Trazzle starts his war at 100%. He is unique, and he may not have many of all the characteristics used for the stat. Age, background, etc.... These stats are general. Nobody can tell you what his chances are, and they may well be wrong. My very best friend's DD was diagnosed with a rare form of Leukemia and given less than 5% of chances of surviving. More than six years ago. And you should look at her, now. Running with my kids on the beach chasing them. They just don't know. And Mini-Trazzle is not alone. He has a great family there, best medical treatment available, and lots of people ready to fight for him and with him. So throw the leaflet away, it's not describing your son. It's a long and hard road. You help your son during the day and we MNetters will help you during the night. Hair falling is quite distressing but it proves the meds are working.

35% is NOT MiniTrazzle's possible survival rate. Those rates actually mean jack shit to an individual - MiniT's could be much much higher than that and I actually think you were doing the right thing initially and not reading stuff like that. It just scares the shit out of you and doesn't actually tell you anything about your sons unique chances of pulling through this. At this very early stage you have to believe he has every chance in the world of surviving this.

We are all here for you, through all of this - until he too is running along a beach x

Trazzle, still here, cancer is fucking awful

cestlavielife Tue 23-Oct-12 12:33:10

look at it as quite significant chance of survival. this is not a 99.9 percent non-survival rate. this is a cancer which can have a good outcome.

mini trazzle is unique, you and the doctors will do all they can for him.
today, the treatment is ongoing and everything is moving in the right direction. when it goes a step backwards you will deal with it. dont jump ahead of yourself, one step at a time...
thinking of you

Alibabaandthe40nappies Tue 23-Oct-12 12:40:49

Keep typing various things which sound trite and awful.

I'm so sorry you are going through this. ((hug))

tholeon Tue 23-Oct-12 13:02:35

Virtual hand holding. You are doing the best, most wonderful mummy job. The hardest one anyone can do. Have you spoken to the doctors about the stats you read?

It is hellish for you. We will keep hand holding. I wish we could do more.

blizy Tue 23-Oct-12 13:07:50

Oh trazzle, I am so sorry you had a crappy nightsad. You are right, cancer is a bastard, but not unbeatable. I echo and agree with everything chippingin said, wise words from a wise lady.
I hope you are having a better day (and miniTrazzle too).

drjohnsonscat Tue 23-Oct-12 13:18:22

Poor darling boy and poor you. Trazzle I can hardly imagine what you are going through. It's unspeakable. But there is every reason to think your son will get through this - he's in the right place and he's having everything thrown at his treatment. Thinking of you and wishing you both strength.

ShiftyFades Tue 23-Oct-12 13:19:23

trazzle I think I read it as you intended due to my horrendous lovingly produced accountancy investigations... I write some stunning ones wink
Outstanding means "still waiting" to me too grin

Four4me Tue 23-Oct-12 13:23:31

Oh Trazzle, massive hugs. Throw the leaflet in the bin and concentrate on today and today's decisions and challenges. Let tomorrow look after itself. To quote Thumbwitches advice to Cup and Bea 'don't borrow trouble ahead of time.'

When I had ds1 and they told me he had downs syndrome, I drowned myself in information and books and quite honestly it spirally me downwards. I was thinking far too far ahead for my three day old baby. No one is text book and therefore as Chippingin so rightly points out it is impossible to know how miniT is going to react to treatment, so look at your boy as an individual not a stat in a leaflet.

Massive hugs XXXXXXX

NatashaBee Tue 23-Oct-12 13:46:42

Oh, Trazzle... I feel awful for you. I would steer clear of reading any more leaflets unless they are care instruction related. They will only make you feel awful, and reading them can't affect the outcome. 35% is an average. The fact that he has a feeding tube in so is getting the nutrition in he needs (I think I read on your other thread that he had a tube fitted?), is having an aggressive course of treatment, and is doing well on his tests even in the middle of chemo, hopefully swings the odds in your favour more.

cestlavielife Tue 23-Oct-12 14:09:20

also ask about make a wish charities - get your family and ds something to look forward to - your family deserves as much as anyone

eg www.make-a-wish.org.uk/wishes/
www.whenyouwishuponastar.org.uk/
www.rtcw.org/
etc

onedev Tue 23-Oct-12 18:25:32

Oh Trazzle, as others have said, bin the leaflet as it means nothing. Your gorgeous boy is unique & will fight it. He's got an amazing mum & family on his side.

Hope today has gone well.

thewhistler Tue 23-Oct-12 19:12:11

Trazzle, atm I am waking regularly at 3 and 4. Whilst I can't MN you without waking DH, be aware that that is my meditation/prayer time for you, mini T and the other Ts. So if you are awake then, as well as Splodges from the antipodes there is a Splodge in sarf London burning then.

Trazzletoes Tue 23-Oct-12 19:18:44

Natasha I didn't read it on purpose! It was the details of the meeting where they gave us the diagnosis. I assumed that it was details of the actual meeting, not thinking that they have so many of these meetings that they have a standard set of notes. We hadn't asked about survival rates but of course most people do so the info is in there. The notes are care-related, they detail his anticipated treatment.

Today has been ok. He's been permanently hooked up to a feed but has also been ravenously hungry which I'm taking as a good sign! He has barely stopped eating today. Unfortunately we have the only bed on the (full) ward that has a broken tv so it is a trying few days ahead! A friend lent us an old DVD player which has been amazing but I think it's had enough today after being on for several hours straight!

We were initially told we'd be going home tonight but then it was tomorrow night. Now he's likely to go straight in to his next chemo on Thursday so we'll be in til the weekend, most likely.

He was awake so late last night that thank goodness he has fallen straight to sleep tonight. No mean feat with People across the ward watching the Simpsons on full volume.

He's veered between being a gorgeously cute angel today and a complete pita. This afternoon he's had me tearing my hair out and I've shouted at him a few times. I know, I know, my parenting style leaves a lot to be desired. I feel bad enough about it without anyone else pointing it out, believe me.

DH's aunt and cousin popped over today which was lovely. DH's aunt had a party planned for saturday to mark a significant birthday and wedding anniversary. I mentioned that DH still hoped to go but they've cancelled the party because they didn't want to celebrate while DS is sick. I understand that but feel terribly guilty.

It would be lovely to be a perfect parent! Most of us don't mange it while dealing with half of what you're going through. Your son needs you not some creepy stepford mummy.
As for your aunt, I can completely see why she's done it. She won't have done it out of fear of what you might think, but because she doesn't feel lik celebrating. You'll have to throw a huge party when your ds is better ans she can blow out her candles there grin
Oh trazzle, I wish there was something I could actually doooo!

Badvoc Tue 23-Oct-12 19:33:39

Trazzles, don't beat yourself up.
You are allowed to get cross.
You must both be so bored and anxious.
Not conducive to getting on well all the time!
Great that he is hungry.
I am sorry you will be in til the weekend and hope the Simpsons idiots people keep the volume down tonight x

AuldAlliance Tue 23-Oct-12 19:37:06

Oh, Trazzle, you have so much going on and you are being so strong, in spite of the meltdown last night. Seeing those figures would have affected anyone that way, no matter how steely, but I agree with others that it's best to try and carry on seeing your DS as anything but a statistic. Your initial instinct to avoid looking at rates was a good one, I think, as they are utterly abstract, whereas your DS is totally unique.
Your guilt about the party is normal (and a sign of your usual selflessness), but you have other things to focus on now and so does your DH.
Please, please don't feel guilty about shouting at your DS, and don't think anyone on here judges you for it. You are under so much stress, shouting is inevitable and does not make you a bad parent. <<stern face>> I shouted at mine today and I sure don't have anything like your mitigating circumstances <<shamefaced face>>

ShiftyFades Tue 23-Oct-12 19:50:40

Lovely to hear that he's hungry and is sleeping normally, have you had the kidney function results yet?

Hope you get a good nights sleep too.

Any of us would do what DH's aunt is doing, they won't want to party when one of the most precious little boys in the whole world is poorly. I'm glad you have such fantastic, thoughtful relatives.

((hugs))

strictlycaballine Tue 23-Oct-12 20:07:27

Trazzles - shouting is perfectly understandable in such stressful circs and and prob. v. good for your ds to know that it's "business as usual" and be treated as normal ifyswim.

DD and I took the liberty of lighting a candle and saying a prayer for you and mini-Trazzles this afternoon in local cathedral. Just want you to know you and your family are still very much in our thoughts! Sending strength and positive vibes through Eurotunnel to you and yours ...

D0G Tue 23-Oct-12 20:17:03

Message withdrawn at poster's request.

NatashaBee Tue 23-Oct-12 20:24:26

Sorry Trazzle, i wasn't making a dig at you regarding reading the notes, I hope you didn't read it that way - its not surprising that you read them through thoroughly as you were presented with them at the meeting. I think other posters have summed it up much better when they say your DS is not just a statistic and is on a good footing so far.

dikkertjedap Tue 23-Oct-12 20:31:28

Oh, Trazzle, nobody is a perfect parent all the time in spite of our best intentions. You are under far more stress than the majority of parents, so it is totally normal and understandable that you know and then lose your cool. Children forget these things almost straight away, it is us who keep remembering when it happens to us. Try not to beat yourself up, you are doing so well, supporting your son so well and helping him through this difficult time.

Is he able to go to a playroom during the day or does he has to stay in bed? Otherwise he may play a bit, do some games or some colouring maybe or reading stories instead of TV if the TV does not work. Do you have access to a laptop? As far as I know you can play DVDs on laptops as well but you may need simple earphones as the sound is not always very good.

It is great that he is getting lots of food to become as strong as possible. Have they changed his anti sickness medication or has his sickness he had over the weekend gone away by itself?

Is it going to be his third chemo session on Thursday? As others have said, it is not nice that his hair is starting to fall out but it will grow back. It is in a way reassuring as it means the chemo is having an impact and killing the cancer.

I hope you are all back home soon.

ChasedByBees Tue 23-Oct-12 20:42:20

Just huge hugs Trazzle, sending prayers and a splodge of light from Oxfordshire. x

Trazzletoes Tue 23-Oct-12 20:46:49

Natasha I didnt for one second think you were having a dig. I also hope I didnt come across as pissed off. Maybe I was aiming for slightly whiny... But but but I WASN'T mummy!

NatashaBee Tue 23-Oct-12 20:52:08

No, not at all - but i read my post back and it sounded very bossy and scolding! I hope you have an OK night tonight.

Badvoc Tue 23-Oct-12 20:55:07

Thinking of you tonight xxxx

ernestbear Tue 23-Oct-12 21:08:43

So sorry you're having such a terrible time, am here hoping and praying for you both

gordonpym Tue 23-Oct-12 21:18:00

Hunger is a good sign and being a pita another one! wink.
And I'm pretty sure nobody here will think bad of you because you had one (or 2) shout at Mini-Trazzle. First you're human and going through so many emotions, stress, fear, hope, you just name it. Second it allows you to reduce the anger and the pressure. Not the anger at Mini-T of course, but the F&%$& cancer.
At least he is sleeping now, and you should rest too.

BuffyFairy Tue 23-Oct-12 21:22:03

Oh Trazzle I am so sorry I didn't check in earlier. Huge hugs for you. Others have put it far more eloquently so I shall just reiterate that mini T is not a statistic and is receiving the best possible care and a massive amount of love.

You are a brilliant Mum. Don't stress about shouting now and then. On the positive side at least mini T had enough energy to play up!

It must be hard to see his hair fall out. Any requests for hat patterns? That chemo will be putting the bastard cancer on its place.

I am so, so sorry you are going through this. I wish I could take your pain away.

DD is better now and back nursing. Thanks for thinking of her.

Shifty I read outstanding the same as you - accountancy brain here too.

Good luck for the kidney function results.

Huge splodges of light here xx

Love and candles tonight and every night xxx

Please don't feel guilty about anything. Parties, shouting NOTHING is to feel guilty about.
You are dealing with the hardest thing any mother has to do, look after an ill child.
Guilt is not called for.

Trazzletoes Tue 23-Oct-12 21:32:34

SPPB don't we all. I hate feeling so completely powerless and at the mercy of something as innocuous as a cell. And a cell that is MEANT to be part of my DS.

But your lights, thoughts, prayers and support ARE something. Don't forget that. It is immensely comforting to DH and I to know we aren't fighting this horrible battle alone.

There is a playroom here but DS is struggling to get too in to it at the moment. This chemo session really did knock him for 6. He isn't required to stay in bed but he's constantly hooked up to a drip so we only move to places when necessary!!! I've asked the nurses if we can move to a bay with a working tv tomorrow when one becomes available. Should be fine. It's just hard for him to hear his favourite tv programmes when he can't understand why he can't watch them.

No kidney results yet. Right I'm settling down with, hopefully, a DVD on the ropey player. I meant to bring some wool and crochet hooks and LEARN TO CROCHET! My pet project for the year that has never got off the ground. Ah well.

It makes me laugh that people are describing me as selfless! BuffyFairy has known me for more years than we care to remember and she will stand testament that I am, in the main, selfish and can be an evil cow bag :D I just love my DS unconditionally, just like everyone else. You would be the same if you were sat on this beautifully-swirly-patterned wipe-clean armchair bed listening to someone else's tv and your beautiful DS snoring peacefully. Damn he is beautiful and I love him so much.

Oh God trazzle as if you weren't going through enough, you are learning to crochet.

I am SERIOUly crafty, and crochet is impossible. Anyone who can do it is certifiable as a genuine witch.

Trazzletoes Tue 23-Oct-12 21:48:28

Norks the stitches are easy enough... My problem is I can't bloody well COUNT!

Trazzletoes Tue 23-Oct-12 21:49:53

PS. DH thinks MNet is a load of tosh. He also doesn't cry. But he was moved to (a small amount of) tears by DS' little hug.

gordonpym Tue 23-Oct-12 21:53:00

Well, but some witchcraft wouldn't be such a bad idea right now given the circumstances. So I say : go for it, and go straight for a big blanket. I am sure there are some you tube videos .... wait ... here [http://www.youtube.com/watch?v=eqca00LdmAc]. No excuses!

gordonpym Tue 23-Oct-12 21:53:27

Please can mrtrazzle be caused to wander in here and receive the full force of a nest of vipers' love and support ?

bobkate Tue 23-Oct-12 21:55:42

Trazzles, as someone said further up thread, I keep writing and rewriting things, but all sounds so trite and utterly pointless, but I am willing mini trazzles on and wishing him a comfortable night ( and you ). Essex splodges for you all x

Trazzletoes Tue 23-Oct-12 21:57:18

Norks: babysteps... Babysteps... He laughed out loud at the snail though :D and doesn't object that I bring it to hospital and it stands guard over DS.

FiercePanda Tue 23-Oct-12 21:57:48

Splodge of light here for you and MiniTrazzle in Stirlingshire. Cancer's a total twatbasket. X

Trazzletoes Tue 23-Oct-12 21:58:38

bobkate no offence to the rest of the support here but as an original Essexer myself, I do appreciate that <whispers> Essex splashes are the best...

Trazzletoes Tue 23-Oct-12 21:59:28

Twatbasket. My newest and most favouritest insult grin

BuffyFairy Tue 23-Oct-12 22:02:01

Trazzle I will stand testament that you are one of the loveliest people I know. True fact.

You're only an evil cowbag to the meanies who deserve it! grin That's why we luffs you.

IwishIwasmoreorganised Tue 23-Oct-12 22:06:45

Resplodging here from South Wales.

Sorry to hear that the leaflet was so stark but as others have said, it wasn't written about your son, and his cancer.

No-one that the leaflet was written about had you as their Mum and your DP as their Dad, your amazing family supporting them and your team of specialists treating them. I'm also pretty sure that none of them would have had such a special snail above their bed, or a whole army of MN'ers ready to help in any way that they can.

Hope you both sleep well tonight.

Xx

Am a native Essexer as well grin
Whenever I make something PARTICULARLY sparkly, that is my excuse, I am from Essex

ESSEX HOORAYYYYYYYY!

Trazzletoes Tue 23-Oct-12 22:14:42

I luffs you too Buffster.

Just checking in, I hope the ward is all quiet now. A splodge from Hampshire for you.

I took up crochet last year to make squares for MN blankets, I have progressed to various other projects now, all thanks to helpful MNers, so ask away if you want any tips.

ShiftyFades Tue 23-Oct-12 22:25:42

<polishes splodge>

Ahem.... South Hampshire Coast ones are blooming bright too you know.... Aided by my unnatural love of anything sparkly wink

ShiftyFades Tue 23-Oct-12 22:27:30

Buffy maybe we should help Trazzle with this counting lark? wink

BuffyFairy Tue 23-Oct-12 22:43:14

Shifty everyone knows accountants can't actually count wink

<looks for calculator>

BuffyFairy Tue 23-Oct-12 22:45:30

Trazzle take up knitting instead.

Hope ds has a good night's sleep.

Trazzletoes Tue 23-Oct-12 22:46:58

Shifty my DM was born and bred on Hampshire's coast. It has a special place in my heart and fond memories of summer holidays.

Trazzletoes Tue 23-Oct-12 22:47:56

Buffy, I tried but I can't cast on. Or off. Fail.

dikkertjedap Tue 23-Oct-12 22:52:17

Yeah, agree with BuffyFairy, knitting is much easier. Also, with big needles and thick wool (and there are lots of lovely colours available, including mixed colours) you make very quick progress and depending what you make you don't need to count much ....

I love knitting .... grin

ToffeeWhirl Tue 23-Oct-12 22:52:30

Another native Essexer with a love for the sparkly stuff here grin.

Trazzle - thinking of you and sending you lots of positive thoughts. A virtual candle is burning for MiniT here.

I'm the other way round Trazzle, Ddad is from West Yorks but we're all in Hampshire now, I wasn't born here but I can't imagine living anywhere else. My Dad's family are all in W. Yorks still, so it's a special place for me.

crochet is easier than knitting

CrystalTits Tue 23-Oct-12 23:03:31

Another South Hampshire coast splodge for you all, Trazzle. Thinking of you.

BuffyFairy Tue 23-Oct-12 23:10:52

If I get to see you when I head up north in Dec then I'll teach you my MIL's casting on technique. Even I manage that one grin

You tube video's are your friend.

Halfling Tue 23-Oct-12 23:31:03

Sending lots of love and hugs to mini trazzle. And a big splodge of light from Berkshire.

onedev Wed 24-Oct-12 06:55:53

It's good to know then Trazzle that mean evil cowbags must make the best mums grin.

All the best for today & hope you get a bed with a working tv.

onedev Wed 24-Oct-12 06:58:28

Obviously meant to add that the reason it's good is because I definitely fit into that category myself often grin

KnottyLocks Wed 24-Oct-12 07:19:56

<waves from Hampshire coast>

One certifiable crochet witch (according to Norks' theory grin ) here to help with any hooky questions.

Sending big hugs and loads of positive thoughts.

Trazzletoes Wed 24-Oct-12 07:44:52

Knotty you are definitely in fond memory territory if it was you that sent the hug...

Ok, so the other problem I have, apart from being unable to count, is that after I've done my chain, and a stitch or two, I can't work out where to put the hook for the next stitch so really I need a witch to sit with me for a while and talk me through it. I'm a bit simple grin

KnottyLocks Wed 24-Oct-12 07:52:34

YouTube is your friend here then. Do you have access to it at hospital? If you do, I'll gather some links for you.

KnottyLocks Wed 24-Oct-12 07:56:01

I still have a bit of the blue spotty fleece left if the little chap fancies a hat to match his hug.

Trazzletoes Wed 24-Oct-12 08:02:03

Oh bless you Knotty and yes, I can access YouTube here.

Trazzletoes Wed 24-Oct-12 08:03:54

<whispers> he's in size 4-5 clothes...

KnottyLocks Wed 24-Oct-12 08:08:05

Ok. Am on the case smile

smilesmilesmilesmilesmilesmile

A coven of crochet witches

saffronwblue Wed 24-Oct-12 09:09:23

Evening splodge from Melbourne. Trazzle even while you are in this awful situation you are first and foremost and always a mum and mums shout!

A friend of mine found doing patchwork very therapeutic - I believe you can get kits (I'm a complete craft virgin so know nothing), but she found that being able to do a piece at a time helpful, enough to distract her but quick enough to finish in short bursts IYKWIM.

All the best.

pinkbraces Wed 24-Oct-12 09:22:04

Another closet Essex girl sending a big splodge for the Trazzles. No help with the crochet, I cant even sew.

Trazzletoes Wed 24-Oct-12 09:43:24

Uh oh... DS just sent me out for a Greggs sausage roll <ducks> grin

As I was leaving, one of the nurses described DS' bay as a "nightmare" this morning. Which, to be fair, it is. He is throwing food on the floor and being naughty. But he's the only one who hasn't kicked someone yet this morning...

hellhasnofurylikeahungrywoman Wed 24-Oct-12 09:44:00

Sending an I-hark-from-Essex-but-was-born-in-Hampshire-and-now-live-in-Cambridgeshire splodge to you today.

tholeon Wed 24-Oct-12 09:51:46

Being naughty excellent sign. Also wanting sausage rolls. Bring on the Greggs..

Do you have an iPod? Could you beg steal or borrow one? Then he could watch his shows and play games from his bed? Loads of brilliant apps for three year olds..

ShiftyFades Wed 24-Oct-12 10:17:38

grin at the Greggs sausage roll grin

Would he like a Fruit Shoot to go with it? wink

Hope you got plenty of rest last night.

Buffy I've lost my calculator or some sick bastard has stolen it from my desk sad I'm having to use Excel now angry

ChippingInLovesAutumn Wed 24-Oct-12 10:38:21

Oh blimey - it sounds more like a zoo than a hospital grin

How far from the hospital do you live? If he's well enough to fancy food & be a PITA can he not go home for the rest of the day/night and back tomorrow?? If not, I hope he at least gets to move to a bed with a working TV!

Oh - and shouting/telling off 'as per normal' is perfectly fine (and normal!!) 'business as usual' is a good thing!

How is MiniT coping with his hair falling out? Have you considered giving him a number 2 all over so that his hair loss isn't so obvious for him? I suppose you have and I'm grasping at straws to do/say something even vaguely helpful.... sorry.

Trazzletoes Wed 24-Oct-12 11:29:38

We've moved beds... Cbeebies is ON!

We're fairly local but unfortunately our reason for being in (low potassium) has nothing to do with how he feels in himself. He's hooked up to a drip constantly so we can't leave. On Monday he was weighed and had lost over 2 kg since the start of the month. He got weighed again this morning and is less than a kilo down on his starting weight. I'm not lying when I say he's been eating like a horse!!!

Trazzletoes Wed 24-Oct-12 11:32:33

The patchy bits of hair are at the back so he's not really noticed yet except that his top and pillow are covered. We've talked about it a lot and he says he'll be sad when it falls out.

I have considered cutting it short but, entirely selfishly, I want to leave it as long as possible so I can run my fingers through it and remember how it feels til it grows back. Oh crap I'm crying again...

BarmeeMarmee Wed 24-Oct-12 12:11:54

Trazzle, big hugs. Tears are perfectly understandable and more than allowed. Do you have a lock of his hair to keep? I know a friend of mine's hair grew back curly after treatment when previously it had been straight! Sorry I don't know if that's a bad thing or a helpful thing to say.

Still splodging here in Bucks for you.

ChippingInLovesAutumn Wed 24-Oct-12 12:19:10

Sorry - I forgot about the pesky damn drip!!

Wow, he must be eating like a horse grin If he can do this between doses of Chemo it will help x

I totally understand you not wanting to cut it off sad I have some of my godson's in a locket from when he was in hospital, it's not the same as you can't run your fingers through it, but it's lovely to have. If I was you, it would break my heart to cut it too, but I just thought it might make it a bit easier on him not actually seeing it falling out - if it's already short he wont notice it so much.

Big hugs - wish I could be there to give you them in person!!

HATS - hats hats hats - MNers are a knitty lot, you really need to let us know what you think he would like most?!

BuffyFairy Wed 24-Oct-12 12:45:02

Cry away Trazzle. Let it all out on here.

Fantastic news that he's put some weight back on. That will make him stronger.

D0G Wed 24-Oct-12 14:14:35

Message withdrawn at poster's request.

ShiftyFades Wed 24-Oct-12 18:09:44

That's fantastic weight gain grin

So sad for him to find his hair like that sad

But great news about the TV grin

Big hugs Trazzle, always thinking of you xxx

PedallingSquares Wed 24-Oct-12 19:24:51

I am de-lurking to say I am thinking of you and sending splodges of light and positive thoughts across the North Sea to you and Mini-trazzle and all the Trazzle family.

Badvoc Wed 24-Oct-12 19:29:28

Great news re weight gain smile

KnottyLocks Wed 24-Oct-12 19:55:08

Ok, interrupting this to bring you a crochet moment!

Catherine Hirst more or less 'taught' Pistey how to crochet along with a few of us on here.

her online tutorials are here She teaches right and left handed crocheters. She is American but uses UK terminology which in my opinion is easier to follow in patterns.

Hope that gets you started ok.

witches, you are all witches!
videos of witches are still witches

envy

I am NOT a crochet-witch sad

sending love tonight and every night to the entire trazzlefoot

KnottyLocks Wed 24-Oct-12 20:02:33

But you could join us, Norks!

See above grin

Thinking of you and your darling boy, Trazzle x

Trazzletoes Wed 24-Oct-12 21:33:32

Hi, so DS carried on eating all afternoon. One of the other families in the bay shouted him a McDonald's, which was lovely of them. His potassium levels are back up but his magnesium levels are a little on the low side do he's now on supplements for both.

Chemo #3 starts tomorrow. He let me snuggle up with him on his bed which made me so happy. We have never co-slept and he very rarely snuggles.

He has been, again, a lot happier today. I'm so pleased with his weight gain, it's just been phenomenal. He is such a little star, I still can't believe he's going through this. It doesn't feel real to me.

My mum was at a meeting yesterday where they were talking to the DC's nursery about what's coming and she was told when DS has his surgery they will remove a kidney. She was really upset by that and was really surprised that it doesn't really bother me. I mean, I know it will make life a little more awkward but if having 1 kidney removed and not having kids is as bad as this gets, well, jeez, I'd take that a squill ion times over.

Hooray for guzzletrazzle. Sooooo glad to see that he is eating Gregg's and McDonalds, not mung beans and tofu smile

You are still sounding positive and confident and I completely understand your feeling that if that's the deal...you will take a mono-kidneyed cuddly, snugly, tiddleytrazzle and thank the stars above for him.

As do we all.
Night night, love and light

onedev Wed 24-Oct-12 22:18:27

Glad he's eating - such a strong boy you've made there.

dikkertjedap Wed 24-Oct-12 22:31:45

Such good news that he is eating so well, it will no doubt give him lots of strength and he will much better be able to cope with what is ahead.

Also great news that he is feeling happier and hopefully a bit less tired.

I hope he can go home as soon as the chemo session has finished.

Have all a good night.

bobkate Thu 25-Oct-12 00:05:43

Trazzles - if you did want to try knitting instead, I have some spare needles ( straight and circular ) that I'm not using. I would happily post them too you if you'd like x
Glad he's eating well and that you've got a bed with Cbeebies now smile

ToffeeWhirl Thu 25-Oct-12 00:08:23

So glad you are sounding more positive and have had a good day. Well done MiniT on eating like a horse!

Hooray for snuggles and weight gain, night night.

lisad123 Thu 25-Oct-12 00:39:19

Marking my place to come catch up tomorrow at a decent hour blush
Hope all is well x

ChippingInLovesAutumn Thu 25-Oct-12 00:48:06

Lovely to snaffle some snuggles smile

We're going to have to change his name to MaxiTrazzle if he keeps this weight gain up wink

I hope you don't mind me asking, but why will they take one kidney away when they do the surgery?

I hope you both get some sleep tonight
x

Trazzletoes Thu 25-Oct-12 06:49:17

Chipping, it was the Macmillan nurse who said that, not our consultant so it may not necessarily be correct anyway. His primary tumour is on his adrenal glands, right by his kidneys. I assume they take out some surrounding healthy tissue and there's no point leaving half a kidney?

Glad to hear this latest update, have been following but not posting much as I am rubbish with words and others say it so much more eloquently...

Keep eating MiniT and keep your spirits up smile

Thinking of you all x

Trazzletoes Thu 25-Oct-12 08:02:04

Maryland cookies for breakfast? Dont mind if we do...

Yay! for Maryland Cookies - the breakfast of choice for discerning diners (or breakfasters!) grin

Have a good day, will be keeping you in my thoughts x

Trazzletoes Thu 25-Oct-12 08:08:18

I just googled adrenal glands and they are a blob on top of the kidneys. Not certain that they're not actually attached to them so removing the kidney would make sense.

dikkertjedap Thu 25-Oct-12 08:57:20

I am all for cookies for breakfast (very Italian I would say .... they like to have a sweet breakfast).

Would you be able to speak to the doctor so he can give you some more information about having to remove the kidney. As you say, it probably has to be done because of the position of the adrenal gland. I have no idea of half a kidney is any good (eg whether it can grow back or not). However, many many people live perfectly happy lives with one kidney.

Hope you all have a good day with lots of nice things to eat for MiniTrazzle.

Trazzletoes Thu 25-Oct-12 09:04:59

Dikkert we'll cross that bridge when we come to it. It's the least of my worries at the moment. I know a couple of people with 1 kidney and it doesn't really affect their lives.

I don't think kidneys do grow back but I'm not medically trained

PedallingSquares Thu 25-Oct-12 09:47:43

Just wanted to send you lots of positive thoughts and strength for Chemo #3

You'll get there, one step at a time Trazzle.

Thinking of you all x

ToffeeWhirl Thu 25-Oct-12 10:16:16

Did you know there is a Neuroblastoma Society, Trazzle? I expect you have been given the information by the hospital, but, if not, there's a link here. They have befrienders so you can talk to other parents who have been in the same situation. They also have a downloadable book, suitable for pre-school children, about being treated for cancer.

I hope today goes ok with Chemo #3 and that you get some more snuggles.

smile

saffronwblue Thu 25-Oct-12 10:41:34

It is great that minitrazzle still has a 3 year old boy appetite between his treatments. Good luck for today.

Trazzletoes Thu 25-Oct-12 12:03:59

Another Greggs run this morning!

Thanks for the link - we had been told about them but I hadn't looked at their website.

Four4me Thu 25-Oct-12 13:57:30

Afternoon, just checking in to say I hope the chemotherapy goes smoothly. Nom nom to Maryland and Greggs breakfast!!!!!! X

THERottenRancidRavingRhubarb Thu 25-Oct-12 14:43:49

Greggs is great! However I'm wondering if there isn't someone nearby who can get stuff in for you, to save you having to go to Greggs? Sainsbury's and other supermarkets have some great 'potted breakfasts' including yoghurt with crunchy toppings and lovely smoothies. Having a supply of ready-made meals would save you so much time.

I'm praying the chemo will blast this cruel cancer to smithereens and give you your lovely, gorgeous ds back.

Trazzletoes Thu 25-Oct-12 14:58:28

Rhubarb my breakfast is already sorted. As is DS'. The Greggs is his morning 'snack' for the moment, and definitely not when we're back home!!! It's the only thing he fancies so his dietician has basically advised us to get him what he wants and any calories are good calories. He gets nutrition through his feeding tube overnight. Plus a quick walk to Greggs is a nice break from the ward.

There's been another trip this afternoon!

It looks like his nurse forgot to give him his potassium overnight sigh so his levels have plummeted again to the point where they might delay chemo.

I know the nurses are doing an excellent job and I know they work hard, but it's just frustrating that we might have to stay for the weekend because she didn't follow his chart properly.

Argh!

Still, I've been trying to crochet this morning and have managed a few rows. I might post a picture later for Knotty's perusal grin

dikkertjedap Thu 25-Oct-12 15:14:13

How annoying for want of a better word that the nurse forgot to give him the potassium shock.

You are right, they do work incredibly hard (well many of them anyway) but they should follow the charts and you should be able to rely on them doing that.

I would actually raise this as an issue with his consultant and from now on I would question the nurses if you are unsure if they are doing what they have to do.

It is really annoying but there is too much at stake and the last thing you want to have to deal with is stupid mistakes. I have had similar situations in hospital where a crucial machine was not switched on by mistake, since then, I have learned to try to understand what has to be done and when and to check it myself and question if unsure. Most nurses don't mind this at all.

Hope they can start the chemo as soon as possible so you can all go home soon again.

Good luck with the crochetting! smile What is your first project?

Witch grin

Besides which, there are proteins and vitamins and actual food EVEN in Gregg's.
Even if there weren't, the habit of eating is not one you want to lose.

When anyone is ill, you say 'what do you fancy' and something with salt, sugar and fat are the normal responses.

If tiddlytrazzle were demanding gin, then you MIGHT have something to worry about

THERottenRancidRavingRhubarb Thu 25-Oct-12 16:18:14

I reckon it's Trazzle who might need the gin!

Trazzletoes Thu 25-Oct-12 17:00:06

Right, they're starting his chemo today.

glad to hear it's not delayed

onedev Thu 25-Oct-12 18:12:46

Glad the chemo is starting today.

KnottyLocks Thu 25-Oct-12 18:14:10

You can post pics of crochet anytime!

Glad that chemo is underway. If I could blast the nasty bugger with my crochet hook, I would.

dikkertjedap Thu 25-Oct-12 19:05:37

Glad that they can start today, hopefully, you will all be home for the weekend.

Hope MiniTrazzle can keep up his brilliant appetite.

IwishIwasmoreorganised Thu 25-Oct-12 19:38:33

Great news that things can still run according to schedule.

Have you considered investing in shares of Greggs? wink

thewhistler Thu 25-Oct-12 20:00:14

Trazzle, hope chemo going well. On diet, GOSH gives exactly the same advice, give them what they want and will eat. So much more sensible than the food stalinists we met elsewhere. And maccy d has toys and protein and even bits of veg.

Good luck with the crochet. It's very calming. Could teddy have a scarf after his courage ?

DawnOfTheDee Thu 25-Oct-12 20:04:03

Glad the chemo is not delayed. Delays are the last thing you need right now, especially ones that could've been avoided.

Good luck with the crochet. I have started knitting. I seem to keep adding stitches though so the scarf I am making for my friend is getting progressively wider. Have no clue how i'm doing it. It looks pretty awful. Am slightly worried my friend will think I don't like her or something....wink

By the way you can get Greggs gift vouchers! My friend won some as the booby prize at a quiz. Maybe something to request when people ask if you need anything....? grin

strictlycaballine Thu 25-Oct-12 20:33:18

Just popping in to say g'night and good luck with next round of chemo. Hope you will be able to get home for this w/e x

blizy Thu 25-Oct-12 20:43:43

Just popping on to say hope the chemo goes well and that miniT does not feel to poorly with it. My splodge is still shining for you all.

ChippingInLovesAutumn Thu 25-Oct-12 21:11:18

Regarding his kidney, I hadn't heard of it being done before, but when you think about the location of his tumor it makes perfect sense. However, as you say, worry about that when it happens and we come with a spare wink

Loving that he's turned into a Gregs hound! Of all things, it had to be Gregs grin As long as he's got the feeding tube in, I'd let him eat whatever he wants, when he wants it - in hospital or at home. As they say - any calorie is a good one smile <shame I can't harvest a few off of my hips for him!!>

I'm pleased his treatment isn't being delayed & I hope you can both get home for the weekend.

I know the nurses are busy - but really?! hmm

Good Luck with the bloody crochet. Pidj tried to teach me - I was terrible!! I'm sticking to knitting - much much much easier!!

MrsMoosickle Thu 25-Oct-12 21:12:44

Just adding my good luck and prayers too. Hope tonight is peaceful for you all.

Mrs Moosickle

Trazzletoes Thu 25-Oct-12 21:24:21

The crochet is going ok, although I can't post pictures from my phone. No project at the moment, as such. I'm just learning stitches. But hoping I may be able to make a square for cup's blanket. It depends on whether a very wobbly square of double crochet counts.

After that, my sister gave me some patterns for amigurumi. I can dream...

<arf> at Greggs gift card, Dawn!!!

Spoke to another neuroblastoma mum today. She is a very positive person. She confirmed to me that the statistics are very out of date since they look at survival rates after 5 or 10 years. An awful lot changes in that time with regards to treatment. Survival is still by no means certain but it equally should be significantly better than 35%. I hope!

DS has had a lovely day. He's been so much himself we had to instigate a time-out! And again eaten like a veritable horse. He even giggled! I haven't heard him giggle since September <melts inside at his utter gorgeousness>.

KnottyLocks Thu 25-Oct-12 21:38:37

Awww, giggling is fabulous. Bless him smile

Sounds like your chat with the other mum was one worth having.

As for wobbly squares, I can work with those. Don't you worry. The thought and love gone into a square is the most valuable thing smile

You working with UK or US terminology btw?

AuldAlliance Thu 25-Oct-12 21:43:25

Trazzle, I'm so glad to read your last post.
I know I've said it before, but if there is anything French that mini-Trazzle would like, do PM me. (Though we don't run to Gregg's sausage rolls down here in Provence, sadly wink)

Trazzletoes Thu 25-Oct-12 21:50:22

Knotty: UK I think? Double is the most simple crochet, right?

Auld: thank you - don't know about DS but there's another special place in my heart for France. I lived in Lyon for a year at uni and very much still miss a daily, fresh-baked pain au chocolat and of course beer with my menu best of mcnuggets grin

fatzak Thu 25-Oct-12 21:54:01

Hi Trazzle. Keep checking on your updates to see how your DS is doing. I'm not sure if I ever found out if you are in LGI? I wonder if you are as I often did the Greggs run when DS was in there smile We're also under the dieticians at LGI so again I am imagining who you might be seeing! Over active imagination here but thinking of you very much x

AuldAlliance Thu 25-Oct-12 21:55:50

Blimey, that's a bit of a challenge!! How to get freshly baked pain au chocolat and a MacDo with beer from here to the UK in record time...
Maybe a Gregg's sausage roll would be relatively doable, after all!

Am intrigued at the US/UK thing. Is there a transatlantic language barrier that extends even to crochet?

Trazzletoes Thu 25-Oct-12 22:22:00

Fatzak: yes we are. Maybe I'll see you at the Greggs on great george street sometime soon grin. I'll be the haggard one with no make up asking for a sausage roll and one of their ring buns.

Auld: grin if I'm right, our most simple crochet is double crochet, which in the US is single crochet. Our treble crochet is then double crochet... I hope I'm right!

Trazzletoes Thu 25-Oct-12 22:22:49

I could just get a macdo and buy a beer from tesco... Could be easier?

barefootcook Thu 25-Oct-12 22:26:42

Great news about the Chemo starting and you meeting another mum in the same situation. The giggles are wonderful. He must be feeling a bit better. Hope the Trazzles have a good night and get home soon.

AuldAlliance Thu 25-Oct-12 22:38:10

Well, other than the beer-cum-MacDo, if I can send something mildly forrin to your gorgeous, funny, naughty, snuggly, brave, guzzling, giggling boy, I'll do so in a second.

Ahem, trazzle if nothing else, your last post explains why anyone who understands the arcane and mystical arts of crochet is a WITCH envy

ChippingInLovesAutumn Thu 25-Oct-12 23:12:40

I'm really pleased that you have met & spoken to another positive NB Mum - hopefully you can be RL support to each other?! How old is her child? I wonder if she's an MNer?

Sadly, I don't think I'll be the haggard one with no make up asking for a sausage roll and one of their ring buns will mark you out in the Gregs near the hospital sad I think you'll have to drag your crochet along with you and wave it about a bit grin

Hope you both get some sleep tonight
x

Trazzle -well done with the crochet. I started 18 months ago with a very wobbly square which went into a MN blanket and I have found it very easy to progress onto more complex items, there are some photos on my profile.

Glad you've found the other mum, that makes a lot of sense about the statistics. Have a good night. x

oxeye Thu 25-Oct-12 23:30:53

been away so just catching up - so glad about weight gain!
I wonder if you might want to keep a wee bit of TT hair since it often grows back very differently - colour and/or texture?

onedev Thu 25-Oct-12 23:36:42

Glad today was a better day. I've never even considered crocheting & reading this sounds like gobbledygook so think I'll still be staying away as I obviously don't have the skills!

Hope you have a peaceful night & another good day tomorrow.

ToffeeWhirl Thu 25-Oct-12 23:43:25

Great news about the chemo starting in spite of the nurse's error. I hope this means you will all get home this weekend. And I'm glad you've met another mum in the same position - especially as she was able to allay your worries a little about the statistics.

Lovely to imagine MiniT giggling. You convey his utter gorgeousness very well. smile

SaggyOldClothCatPuss Thu 25-Oct-12 23:44:46

Logging in for support. xx

BuffyFairy Fri 26-Oct-12 00:05:34

Awww at miniT giggling. I think my heart will melt at his cuteness. It sounds like he's coping really well, in the way that only children can.

Great news that his chemo didn't get delayed.

No, not crochet! Knitting I tell you! grin Seems like you're doing fab. I don't get crochet at all.

I'm glad you've met another neuro Mum (although shame she's having to go through this too). Her positivity is a much needed boost.

Sleep well Trazzles. X

onedev Fri 26-Oct-12 06:50:25

Just checking in this morning to wish you all well for today. smile

Jamillalliamilli Fri 26-Oct-12 09:00:55

Trazzle so sorry I've not been able to properly keep up, (nothing to your problems, but we’re still trying to deal badly with sea of mud here and one day quickly becomes another) but wanted to wave and say your all in our thoughts and prayers and wishing chemo 3 to go well. x

RatherBeOnThePiste Fri 26-Oct-12 09:03:00

Definitely crochet, not knitting smile Morning trazzle X

tholeon Fri 26-Oct-12 10:03:10

Lovely news re gorgeous giggling boy. So glad chemo is starting, in spite of error, and glad you have met another mum. You are doing so well, big pats on the back. I couldn't crochet under the best of circs!

Trazzletoes Fri 26-Oct-12 10:32:04

<whispers> it doesn't appear to be as hard as I thought grin

RatherBeOnThePiste Fri 26-Oct-12 10:36:02

The skill trazzle is making out that it is tricky so that everyone is really impressed smile <nods>

Badvoc Fri 26-Oct-12 11:32:00

Wishing you all well for today x

Trazzletoes Fri 26-Oct-12 12:51:11

To be fair Pistey I've only tried straight rows of double and treble. The idea of doing a granny square terrifies me somewhat...

KnottyLocks Fri 26-Oct-12 13:00:45

If you can go trebles, you can do a granny square smile

Seasy!

RatherBeOnThePiste Fri 26-Oct-12 13:06:48

I found going round and round easier than lines. And I am talking crochet here smile Catherine Hirst taught me, bless her, patience of a saint that one grin

KnottyLocks Fri 26-Oct-12 13:24:47

She needed to have smile

dikkertjedap Fri 26-Oct-12 13:57:05

Sounds like it was the booster you needed to speak to the other NB mum. You are absolutely right, so much has changed in the last five years, many trials are ongoing and the information which comes out of them is fed through in other trials really quickly.

Lovely to hear how well your DS is doing!

Hope you can all go home soon.

thewhistler Fri 26-Oct-12 15:44:09

Brilliant news about the giggles, the eating, the chemo and the nb stats. Things change so much so fast in the medical arena. When I was growing up both prostate and breast were fast, whereas now, caught fast they are curable or chronic. And globalisation has helped hugely in sharing treatments worldwide. In the immuno world we knew the same is true. So I hope you have a lovely weekend with lots of mummy cuddles.

JuSt checking in with this evenings delivery of love, light and all good wishes.

thanks

Trazzletoes Fri 26-Oct-12 23:39:38

Hi, DS has had another reasonable day today, fuelled mainly by sausage rolls and Maryland cookies grin. Apparently the children tend to tolerate each cycle of chemo better. I wish they'd told me that before(!) as I was expecting him to go steadily downhill!!! His appetite has slowed a bit but that's not necessarily a bad thing.

My knuckles are red raw. I have no hand cream so have resorted to a spare tube of Lansinoh. Ow.

DS' naughtiness has carried on today, but he's realising that we won't let him get away with murder just because he's in hospital and feels rubbish. It doesn't help that the other boys who have been in our bay have been kicking everyone in sight and saying things that I don't think are great for DS to hear constantly for a week <middle-class emoticon>. One called his dad a turdbrain today and his dad just laughed, for example, so to some extent I think DS is trying his luck.

Happily he loves his gruffalo hat and gloves (thanks for the tip!) and has been putting them on and rrrrrrrrrraaaaaaaaarrrrrrrring all afternoon.

I also have some thank toys but I can't remember who to do will try and PM you all.

In much much sadder news, there are I think 4 children being treated at the hospital with neuroblastoma and one of them tragically passed away this afternoon. He was younger than DS. I didn't really know his family too well but I think he had a very bad infection.

It's utterly terrifying and I can't imagine what his family are going through. It's so bloody unfair. DS is getting an extra big squishy cuddle tomorrow whether he likes it or not and I am thanking my lucky stars that we still have hope.

DD came to visit today and it was lovely to have some special time with her too. And DS asked me for snuggles a couple of times. How could I refuse? Well, I couldn't, of course!

ToffeeWhirl Fri 26-Oct-12 23:39:58

Hope today went ok, Trazzle.

ToffeeWhirl Fri 26-Oct-12 23:45:24

X-posted! Good to hear your news and that the chemo will get easier, not harder. How difficult for you to have to manage your DS's behaviour on top of everything else when all you want to do is cuddle him. Hopefully, it's a good sign that he's feeling up to being cheeky though.

I am very sorry to hear of the other family sad.

Hope you manage a restful(ish) night (not sure how likely that is on the ward) and that it includes snuggles with MiniT.

Trazzletoes Fri 26-Oct-12 23:47:19

Knotty you haven't seen my trebles... They are denser than my doubles and look nothing like the picture in my book confused

Trazzletoes Fri 26-Oct-12 23:48:44

Toffee, I'm in my own bed tonight. DS is hopefully being discharged late tomorrow night. Night - so I can enjoy my comfy big bed.

Zzzzzzzzzzzzzzzzzzzz.

ToffeeWhirl Fri 26-Oct-12 23:52:56

Oh good for you! Sleep well.

thewhistler Sat 27-Oct-12 00:28:21

Have a lovely weekend with lots of squash cuddles.

thewhistler Sat 27-Oct-12 00:36:16

Squishy, not vegetable..

And hope you get some rest.

How's he doing today?

KnottyLocks Sat 27-Oct-12 09:30:49

Hope you managed to get some rest last night.

Thinking of you all x

tholeon Sat 27-Oct-12 09:32:32

You are defo doing the right thing trying to discipline him as normal, am sure he needs that for his own sense of security. Tough though. So sorry about the other little one.

I remember the hospital red raw hand thing well. Get one of the many people desperate to help to get you some posh hand cream. I would if I knew where you were...

RatherBeOnThePiste Sat 27-Oct-12 10:31:40

brew
Morning, hope you had good sleep in your own bed, my thoughts are with you all X

Trazzletoes Sat 27-Oct-12 11:10:12

News from DH I'm trying to sound calm but am crying with rage which I know is an inappropriate response, esp given the trials that other people are facing is that, instead of the time decreasing til DS can leave tonight, his treatment actually wont finish til gone 11 so I'm to stay in again. It's ok though because we can leave first thing <sarcastic emoticon>. Grrrrrrrrrrrrrrrrrrr.

BarmeeMarmee Sat 27-Oct-12 11:46:51

Oh Trazzle how disappointing for you all. I'm not surprised you're feeling angry-all geared up for what you thought was happening and that's been taken away. I feel for you. Big splodge of light heading your way from Bucks still.

onedev Sat 27-Oct-12 12:04:01

Sorry to hear that - no wonder you're upset. Hope today goes ok otherwise.

OH no Trazzle how disappointing. i hope everything goes to plan today.

Re the handcream, I find Lansinoh is brilliant on mine but the stickiness is a problem, not suitable for quick daytime use. Especially not if you are trying to crochet. My favourite for when the skin is getting bad is Neutrogena. I guess you are having to use hospital soap, it might be worth getting something gentle of your own and taking that in with you? I find block soap better for my skin than even the supposedly gentler liquid ones. Are you having to use a lot of alcohol gel too?

dikkertjedap Sat 27-Oct-12 13:26:16

Trazzle, I am not surprised you feel angry and upset, it is very disappointing as you are all so much looking forward to getting him home again. Why is it that he has to stay longer, does it have to do with the forgotten sodium drip or is it taking longer than anticipated for other reasons?

I hope it all goes well today and that at least he can go home tomorrow.

I found that for very dry sore hands, the Elizabeth Arden 8 hour cream skin protectant very good. It is a peachy colour and almost as sticky as Lansinoh. However, you only need to use very small amounts and it soaks in very quickly (you can also use it on your face). I put plastic disposable gloves on whilst it is soaking in. Not sure about your DS, you would have to ask the staff, but I was also able to use it on DD, in spite of her having extremely sensitive skin and breaking out in rashes really quickly.

Also, I found that the alcohol gel really dries your hands a lot, you can get Vicks First Defence hand foam which remains active for four hours at Boots/online pharmacies etc. The difference with other hand gels is that most hand gels kill the bacteria/viruses on your hand when you are applying but if you then touch something contaminated again you need to reapply. Vicks first defence hand guard creates a thin layer on your hands which keeps killing bacteria/viruses for up to four hours as long as you don't wash hand/put hand cream on etc.

Trazzletoes Sat 27-Oct-12 18:42:21

Hello all. We are DEFINITELY in for the night but are assured that everything will be in place for us to wake up and leave first thing tomorrow.

We had a lovely visit from 2 of DS' godparents this morning, and then an old friend of mine who now works at GOSH popped by this afternoon. He told me off and explained its very hard for nurses to get drips sorted for any specific time.

DS has been a bit more up and down today. He's had his moments but has eaten less and is more grumpy and less interested.

DSis is coming to visit tomorrow which will be lovely.

I'm going to try my first granny square tonight. Please can someone direct me to the thread for cup's blanket? I can't find it anymore - thank you.

GlaikitFizZombie Sat 27-Oct-12 19:09:12

cups thread there is also a crochet support thread , but I'm a knitter so I don't have the link.

I hope you both have a better night.

Trazzletoes Sat 27-Oct-12 19:36:47

Thanks Glaikit, I was looking in Crafts! Doh.

DS has had his insuflon (a kind of cannula in his leg) fitted... All ready to go in the morning... Until... Getting him ready for bed I noticed that the dressing on his Hickman line needs changing. Not going to happen tonight as he is shattered and so we can go once that's done. Hopefully won't be much of a wait...

ChippingInLovesAutumn Sat 27-Oct-12 21:22:55

Oh bugger - there's always something isn't there!

It is hard to discipline them when they are this ill - but necessary or he'll be a nightmare & that wont be good for any of you. As for the others... it's a bit painful at times isn't it, being stuck in a confined area with children who are brought up very differently to your own, it makes everything a bit of a trial.

sad xxx for the family of the little boy who died yesterday, it's bloody unfair.

I hope you get some sleep tonight and get away home sharpish in the morning
xxx

Trazzletoes Sat 27-Oct-12 21:29:34

grin could have done the bloody dressing because he's still bloody awake.

thewhistler Sat 27-Oct-12 21:30:06

Thinking of you overnight. Hope you get some rest.

ChippingInLovesAutumn Sat 27-Oct-12 22:23:42

Little bugger grin Can you knit him to sleep?

ChippingInLovesAutumn Sat 27-Oct-12 22:24:19

Mind you, just noticed your post was an hour ago - so hopefully he's asleep now!

strictlycaballine Sat 27-Oct-12 23:36:56

G'night Trazzles hope dressing gets done quickly and you can get out of there speedily in the morning x

ToffeeWhirl Sat 27-Oct-12 23:54:52

Night, Trazzle. Hope he's asleep now and that you get out of there asap tomorrow morning.

BuffyFairy Sun 28-Oct-12 01:26:12

Night Trazzle. I hope you and ds are getting some sleep now and that you're not hanging around too much in the morning.

So sad for the little boy who died sad

Loved the pic of mini T being a gruffalo grin

Sending my splodge of light from Norwich tonight.

I have a parcel to send you. It contains hand cream!

Trazzletoes Sun 28-Oct-12 04:00:51

Oh Buffy.

And give my love to Naaaridge. Gosh, I haven't been there in about 8 years... I bet its completely different now sad

DS' drip has finished now. YAY! We had an epic battle at 3am though - he didn't want his nappy changed... Because he has been on fluids, he's been weeing like a racehorse. He kicked me. First time ever sad.

And he suffered the ultimate sanction of cuddly toy removal.

I always win...

Trazzletoes Sun 28-Oct-12 04:33:20

Ugh. Can't sleep. Worried sick. The poor children on this ward. My poor little guy.

PseudoBadger Sun 28-Oct-12 04:49:50

I'm here. I haven't posted before but I'm following, and I'm not so good with the words so I'll just hold your hand xx

Trazzletoes Sun 28-Oct-12 04:52:12

Thanks Badger. <squeezes Badger's hand tightly and maybe takes the liberty of borrowing Badger's shoulder to sob on>.

PseudoBadger Sun 28-Oct-12 04:55:35

Of course. I have 2 shoulders and a tissue smile

MaudTheGardenTheBlackBatNight Sun 28-Oct-12 05:04:32

I'm here too drat the insomnia so feel free to grab a hand.

Good morning dear trazzle and tiddlytrazzle

Night worries really are the worst aren't they?mthye creep up and develop a life entirely of their own even when you are in your own bed with nothing more to worry about than the Tesci delivery time and whether you can send something back on eBay.

But, the great thing about MN is that we ae always, always here (apart from when tech nips to the pub) to talk you down or listen and hold your hand.

I am here to hold your hand and cleave you to my ample bosom

Trazzle, another one who never really knows what to say but is lurking and wishing your little boy all the best

GlaikitFizZombie Sun 28-Oct-12 07:58:50

Hopefully you should both be getting ready to go home right now.

Hope you can see my splodge of light because its really foggy here, I'll put it on full beam smile