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Joe vs. The Cancer

(1000 Posts)
TrazzleMISTLEtoes Sat 08-Dec-12 23:26:34

My 3 year old DS, Joseph was diagnosed with the cancer Neuroblastoma in October.

Survival rates are approximately 1 in 3.

He's coming to the end of chemo and so far, chemo is kicking cancer's butt. 3 cheers.

thewhistler Wed 16-Jan-13 17:46:00

Great that Spiderman is energetic . Nuisance about feeding tube but better that they spotted it.

toomuch2young Wed 16-Jan-13 19:17:50

Hopefully tube is repositioned by now and you all have a relaxed evening and good nights sleep at home.

Your family are in my thoughts and prayers trazzle big Cheshire splodges as always.

Please don't worry at all about being self indulgent, that is almost the definition of what MN is for, to support those who need help. And that is you.

If you want to be a marshmallow, we will be your hot chocolate. :0

Trazzletoes Thu 17-Jan-13 03:39:14

You guys always know the right thing to say. <hugs>.

Our Macmillan nurse came and sorted out the tube easy-peasy. I know it's a little thing and easily sorted but it was something I'd been concerned about, I had mentioned it, my concerns had been dismissed, they had the scans for a full 24 hours and it was just by chance someone noticed... On the whole the staff are amazing but when they cock up on the little things, it stresses me out because I worry about the bigger things - are they sure they have enough stem cells? are they storing them correctly? Are they labelled correctly? Without these cells transplanted back, he can never make his own blood again - they will save his life and if I can't count on them to get the small things right...
And this admission had more niggly things than most, unfortunately, and being on a different ward, the staffing ratios were 1 nurse to 2 beds rather than our normal 1nurse for 3-4 beds, and Joe was not exactly a high needs patient yesterday.

DH sent DM and I out to see Les Mis tonight (Hugh Jackman is one of my favourite people ever) which was lovely. I'm only awake now because I had to change Joe's nappy (or rather, I noticed his nappy needed changing when he called me in to make his legs "snuggly and ugly under the duvet". all good because they've changed his laxative as he's been horribly constipated for weeks and now it actually seems to be doing something. Phew!

His operation will also cause short-term problems with pooing as his digestive system will move slightly so if it can be more comfortable by next week...

I'd better get back to sleep as I'm up at 6 to go to work, but just wanted to let you know he woke me up in hospital on Tuesday morning ( on the ward!) by singing "Santa Claus is coming to town" as loud as he could grin. That's my boy!

Trazzletoes Thu 17-Jan-13 03:50:24

I don't want to be a marshmallow. I hate being a marshmallow. I want to be titanium.

But I'm not.

dikkertjedap Thu 17-Jan-13 09:24:06

Glad the feeding tube was put right easily.

It is very understandable that you are worried about the hospital getting things wrong sometimes. It is something everybody who has to deal with hospital/medics worries about. The only thing you can do is to remain vigilant and if you have concerns to tell them and to be persistent if you feel that it is really important. However, in general very little mistakes are made if you consider how many things they have to do, that doesn't make it good, but it is important to put it in perspective.

I hope Joe's laxative has started working and he feels more comfortable.

Brilliant that Joe is in such good spirits grin.

Both Joe and you (and the other Trazzles) are doing so well. You can be really really proud of yourself, how you take everything in your stride and how you support Joe and how you keep your sense of humour.

Sorry you didn't manage to get any sleep, hope work is not too demanding today and you can have an early night tonight.

x

Bloody hell Trazzle up in the wee small hours and work. You are supergirl to go along with spiderman.

And laughing (sorry) at your marshmallow grump. You'd sink in chocolate if you were titanium. Though thinking about it I'd like to be oak - strong and beautiful tries to forget old and stumpy though suspects it is more likely

thewhistler Thu 17-Jan-13 19:10:43

Isn't it lovely when they sing Christmas songs at the wrong time? My 15 yo has just been doing that and Joe will too when he is 15.

Well, if you are a marshmallow you are one with sprinkles on it. And personally I would not want titanium in my hot chocolate, nor I suspect would Joe when he is up to drinking it.

Poor him and the digestive system. Poor you.

Get some sleep tonight.

toomuch2young Fri 18-Jan-13 23:20:09

Hi Trazzle just checking in to see how you and the lovely Joe are getting on?
Have you had snow? Hope Joe has been up to enjoying a little of it.
Re Marshmellows, I think they are highly under rated. They are really very tough and in a much warmer, nicer way than any cold metal. I'm sure Joe prefers Marshmellows to metal any day. grin
Lots of splodges and thoughts as always.

Trazzletoes Sat 19-Jan-13 08:06:33

Hi too much, we are fine thanks. It's snowed overnight so hoping for some snowman building today. It's looking increasingly unlikely that DD's party will happen tomorrow sad and there's no alternative date sad sad so I'm feeling quite down about that, but Joe is as happy as larry.

Meanwhile I'm dreaming about kidneys <gip>

Hi trazzle. Just wanted to say a quick hello. Dd won't allow a long post so forgive disjointedness.

I totally get you re fears of medical mistakes. I am paranoid they'll get the chemo dose wrong. DH is paranoid they'll remember to put it in the saline! I was paranoid about them getting her blood group right for the transfusion... It's endless!

Good for you for being positive about the snow. I'm not keen at the best of times and now all I can think is that I hope it doesn't delay us getting in to hosp for our various appointments.

Hope you have a good weekend.

ToffeeWhirl Sat 19-Jan-13 09:36:57

Sorry about your DD's party, Trazzle. At least she won't know any different and she will enjoy all the fuss and attention from you, DH and Joe.

I'm sure Joe will love building snowmen today. I'm glad he's feeling happy. You must be doing a good job at helping him to feel that everything is fine, in spite of your own fears (so sorry about the bad dreams sad).

Praying - I'm so sorry you are going through this as well.

Cookingupastorm Sat 19-Jan-13 09:47:53

Adding my own positive thoughts and prayers to the hundreds and hundreds already flooding your way. How about being titanium outside and marshmallow inside..it's a lot more cuddly x

Trazzletoes Sat 19-Jan-13 11:33:50

Was feeling positive until I've just seen my credit card bill... Post-Christmas...

I think I need a spending diet to go with my eating diet faints. Though, to be honest, the 2 may be linked... Less chocolate = thinner Trazzle and more repayment money. Hurrah! Simple!

dikkertjedap Sat 19-Jan-13 13:40:30

Brilliant that Joe is in such good spirits. smile smile smile

I hope that he can build a beautiful snowman today! grin

Pity of dd's birthday party. Is it because of the snow? For your dd it will be brilliant anyway given how little she is, she will not even notice.

I think many people over spend during the X-mas period, especially if you have a very ill child.

However, nothing stops you trying to limit it from on, setting yourself achievable targets.

Sometimes buying stuff is just a way of coping with stress. In that case, you may need to seek another way to deal with stress (counselling, hobby, exercise, etc.) - easier said than done. What doesn't help in the UK is the high credit card limits, one way would be to pay off a bit and then lower the limit. I hope you can sort something out, as it is not only good for your bank balance but will make you feel better as well.

Thinking of you all.

x

ShiftyFades Sun 20-Jan-13 01:47:03

Hi Trazzle, glad the tube was easily sorted and I'm sure they are extra careful, check and double check when it comes to the really important stuff like stem cell collection. You have to have so much trust and faith in these people as they are helping your most precious little man, and it sounds like you have trust for them in bucket loads.
Last year I sang at a local theatre, it was my first time of being on a stage. (With a very small group of about 10) The rehearsal was awful, words were forgotten, wrong verses sung etc. we only rehearsed once... Come the performance we were faultless. (Mainly due to me because I was the only one who learned the words properly).
So our rehearsal was like the feeding tube, it wasn't the most important bit, but it was necessary. The performance was like the stem cells, it had to be right, we would have made the organisers look crap if it had gone wrong.
<shite analogy but all I can come up with at this early hour>

Trazzletoes Sun 20-Jan-13 07:00:48

I'm sure they will have made sure its alright, I'm just so scared.

This week has been comfortably far off for so long and now the operation is so real and so scary.

I think I've worked out the credit card (need to check though...) the bill has pretty much exactly doubled so I guess I forgot to pay this month - I can cope with payments at the current level - just - but not at twice that, which was what was panicking me so am slightly less anxious! I hadn't spent THAT much! And am going to try and squirrel away some every month to cover birthdays and Christmas this year as we never do and it's always my credit card that gets hit.

Anyway, my lie-in today so I really should get back to sleep, but had a lovely evening yesterday with work colleagues from a job I left 5 years ago - most of whom know nothing about Joe's illness so had a nice break from the reality of it all, although there were a couple of good friends who asked a bit about it, and a couple of "Facebook friends" who smiled at me, acknowledged me and then immediately turned away and studiously ignored me for the rest of the night. I guess they didn't know what to say?

ShiftyFades Sun 20-Jan-13 09:15:23

Oh Trazzle hmm horrid time for you.

So how is the snow? Do you think some people might be able to make the party so you can still have it, albeit on a smaller scale?

thewhistler Sun 20-Jan-13 09:49:41

Trazzle, yes, it is that they didn't know what to say and were terrified of saying the wrong thing. I've been in that position myself and still find it scary. It isn't that they are not concerned for you.

Trazzletoes Sun 20-Jan-13 10:00:56

When really I was just enjoying having different topics of conversation for once and with people not tilting their head when they talk to me grin. No harm done.

onedev Sun 20-Jan-13 10:15:28

Glad you had a good night - you sound a very understanding friend. Enjoy DDs birthday tomorrow - she'll have a great time regardless of who can make it. All the best for the coming week.

You are right, I bet they didn't know what to say. I don't know what to say and am terrified of saying the wrong thing too. And you sound so lovely - putting yourself in other people's shoes - and finding the positive in everything.

This week has been comfortably far off for so long and now the operation is so real and so scary

Brings to mind a quote that has stuck with me "The future has a habit of arriving unannounced". You've had so many steps to get to this point. And you've managed them with grace, passion and love. Adding fear to this next stage is completely understandable and you wouldn't be human or Joe's mother if you didn't. I guess one question is how can you harness your feelings so it helps you and your family ride the storm of the next few days?

Despite a somewhat shaky relationship with religion ... I will pray for you and yours this week.

<squeezy hugs over tinternet>

barefootcook Sun 20-Jan-13 18:52:40

Hi Trazzle

I just wanted to tell you I am thinking of you all and that the operation is a total success. I will also be praying for little Joe on the day. Please tell us what time the operation is scheduled for. You have all done so well this far.

Trazzletoes Sun 20-Jan-13 22:33:16

Party was cancelled this morning, but at least the house got a bit tidier!

Tomorrow we should be heading across the city to our old home area for a party with Joe's friends but it depends on the weather again. The fritters have been fantastic until now but seem to have abandoned our road today so the snow is building up now.

And an old friend of mine who is also a children's nurse should be moving up here in a couple of months so I'm really looking forward to that.

We don't know the time of the operation yet. We don't even know when or where we are being admitted. But I'll keep you updated. I think I would be fine with the prospect of the operation if it weren't for the boy who has been left brain damaged. I know logically that its extremely unlikely but I can't stop myself from wondering whether this is either our last weekend at home with him like this, or whether its our last weekend at home with him at all.

We had great fun playing in the snow and wrapping up DD's presents so at least we have good memories to get us through the next few months.

I noticed at bedtime today that Joseph's eyelashes are just starting to grow back and his hair is about half a mm long. It will all come out in a couple of weeks again, and tbh looking at it frightens me that the cancer could be growing back too, but it is good to know that normal service should resume in the end.

Thank you for your support. It is appreciated.

thewhistler Sun 20-Jan-13 22:39:20

Trazzle, scary stuff but as you say, some great memories of all the snow etc

I.hope it goes well and will be thinking of you. Love the idea of the fritters being out, BTW.

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