Mumsnetters aren't necessarily qualified to help if your child is unwell. If you have any serious medical concerns, we would urge you to consult your GP.

Joseph's last thread? Here's hoping...

(810 Posts)
Trazzletoes Tue 17-Sep-13 20:47:13

My now 4 year old DS, Joseph, was diagnosed with stage 4 high risk neuroblastoma last October. It's a particularly aggressive cancer with an 80% relapse rate. Long-term survival statistics are not great.

Joe has had 8 cycles of chemotherapy, an operation to remove the main tumour, stem cell harvest, high dose chemotherapy and stem cell transplant as his bone marrow was destroyed, 3 weeks of radiotherapy and now 5 1/2 months of differentiation therapy and imunotherapy.

In April we learned he had relapsed and so had a 5% chance of ultimately surviving. Then, the relapse spontaneously un-relapsed but we don't know for certain what this means for his future. Whether its good or bad news.

He remains bright and cheery and gorgeous throughout.

Trazzles - as I've said recently on another thread, if 5% is what we get then it will have to be enough. It iis enough for hope and a future for your amazing son. Praying everyday for him smile

Just caught up with your last update on the old thread. I know line infections move fast and are very dangerous but yes you should have been listened to and the chest infection thing is quite scary really - because if they were worried about anything it should have been the line rather the chest - iyswim. So doubly wrong.
Is there a specific protocol for temp after the injection? If not could you talk to the consultant about writing one. It might err on the side of caution more than you'd want, and I expect you're worried about abs upsetting his gut when he doesn't need them, but it would at least give you a document to insist they work to or seek consultant advice before a variance.

onedev Tue 17-Sep-13 21:24:21

I'm still with you! Sorry to hear the trauma through the night but glad that the consultants today are listening to you.

We're always here for you to vent & scream & shout - so go for it whenever you need to.

Gingers still crossed very firmly for Joe. Over and out smile

LegoAcupuncture Tue 17-Sep-13 21:27:04

Thinking of Joe and the Trazzle family x

Ragusa Tue 17-Sep-13 21:43:36

Ah mate, crap when people say thing and do another sad Baaaaaah to the ones who do not listen to Trazzle.

Hope wee Joe is doing ok with all the horrible blood tests etc. Stay gorgeous, little chap.

Trazzletoes Tue 17-Sep-13 21:44:41

There's no firm protocol after the injection. It is up to the Doctor who is on. Last time they were going to keep him in and treat him for a line infection until someone called the Consultant (who is running the trial) who told them straightaway to send us home.

They have put him on ABs to err on the side of caution. I get that, but it was IMO completely unnecessary to treat a potential chest infection. The consultants have agreed with me on that today. They have said its the potential line infection (which they also don't think he has but he did have the potential for one on his sats) that is being treated. But no one last night mentioned line infections. Plus they should not have given him medication that I expressly asked them not to.

Unfortunately the night drs are generally massively cautious and simply do not listen. The best we can hope for if we get discharged is to get the drs to confirm we can stay home with a temp for that night. And even then we still phone up and they can still demand us in. I don't know what happens if we flatly refuse to come in but I imagine it would involve social services?

The difficulty is that even though they can be 99.9% certain that the temp has come from the injection, if there are other signs of infection then there's always a risk, alvbeit 0.1% that its something serious and its not a risk they can take.

And today's nurse has been so lovely to me. I like to think that DH and I are generally quite reasonable and don't cause a fuss unless necessary and I would hope that the staff here who know us appreciate that. She brought me a cup of tea this morning, as if she didn't have enough to do already. Lovely lady.

bobkate Tue 17-Sep-13 21:46:43

sad god Trazzles, when you write it all out like that sad. Sorry to read your latest update. No wonder you are so frustrated at times.
Keep going, you should be so, so proud of yourself for being such a fab mum to Joe xx

Trazzletoes Tue 17-Sep-13 21:47:54

northern the 5% applied when he relapsed. Now he's un-relapsed, no one quite knows but we're potentially back in the ballpark of 30-40%. Could be 5%, could be much more like 100%. No one knows. I've stopped worrying about the numbers. I can't count anyway.

LuisSuarezTeeth Tue 17-Sep-13 21:52:45

Trazzle, my thoughts are with you and Joe. I admire you greatly.

Almostfifty Tue 17-Sep-13 21:56:04

Should you get home soon if Joe's temperature stays down Trazzles?

FixItUpChappie Tue 17-Sep-13 22:04:59

What a year you've all had. Your amazing boy has an amazing mum.

Still hoping and praying in your corner Trazzles.

Trazzletoes Tue 17-Sep-13 22:13:00

almost we're in til Thursday morning regardless.

His temp won't stay down - he gets one every night with these injections. However by the time we are discharged with luck they'll have ruled out illness as a cause and should hopefully rely on injections as the cause and allow us to stay at home. We'll see. I'm not holding out any hope right now grin

Fivemoreminutesmummy Tue 17-Sep-13 22:22:23

Still with you and the gorgeous sounding Joe. Gingers crossed and splodging as always.

dublinmary Tue 17-Sep-13 22:47:29

Good luck and God bless

tunnocksteacake Tue 17-Sep-13 22:51:53

Message withdrawn at poster's request.

QOD Tue 17-Sep-13 22:56:56

I often think of you all, feckin cancer sucks

X

ToffeeWhirl Wed 18-Sep-13 00:03:02

Still with you, Trazzle. Sorry you had such a shit time last night, but it sounds as if the day team really tried to make it up to you (lovely nurse to bring you tea smile).

I hope you have a better night tonight.

BoreOfWhabylon Wed 18-Sep-13 00:06:20

Thinking of you, Joe and all the Trazzle family x

BuffyFairy Wed 18-Sep-13 00:22:01

Oh Trazzle, the daily battles you have to fight for Joseph. Sorry I barely posted on the last thread. I'm always with you.

barefootcook Wed 18-Sep-13 00:54:41

Yep- still here. Hope today is better. Love the title!

FayeKorgasm Wed 18-Sep-13 00:58:43

Thinking of you and your little boy.

mynameisnotmichaelcaine Wed 18-Sep-13 05:09:14

Always thinking of you Trazzles. Up right now feeding my 3 day old. He sends you a kiss.

Almostfifty Wed 18-Sep-13 07:11:26

Hope you both got a better night last night.

ancientbuchanan Wed 18-Sep-13 07:33:31

Have name changed but still with you

It's having to remain constantly alert with the medics on top of everything.else that is do exhausting, isn't it. And exposing everything again from new each time.

Hope today gues better.

Thanks for explaining about the numbers Trazzles. It's all background noise anyway isn't it? Numbers say what happened not what's going to happen now. Very sensible not to worry about them smile

ancientbuchanan Wed 18-Sep-13 08:36:32

Explaining, not exposing. Darn phone.

Still with you, Joe, your DH and DD Trazzles

I'm sorry that you're not being listened to. I do understand how frustrating it is not to be listened to by medics. I've in the past had to sign a form saying that I'm taking one of my children out of hospital at my own risk, and against medical advice, it painted the potential consequences of my decision in very stark terms and outlined that the consequences were mine to take. It was a one off decision after following all the instructions and protocols to the letter. I wasn't reported to social services. The nurses completely understood the decision we were taking but the consultant had to, I think, follow the protocols outlined by the NHS due to the risk of litigation. I spent the next 7 days having nightmares and waking every hour to check on the bairn. With reflection I decided being a medic must be the hardest job to do because intuition must often have to be suppressed by the nature of the way healthcare works.

May today be full of tea. Splodging away that you'll be able to get out on Thursday.

LazyMonkeyButler Wed 18-Sep-13 12:23:43

I've read your previous threads about Joe but rarely comment as I am not very good at finding something to say that could possible help you.

I am still here though, sending much love & positive thoughts to the whole Trazzle family smile.

NomDeClavier Wed 18-Sep-13 12:30:39

I also read and rarely comment because I just don't know what to say. You're on such an emotional roller coaster and you're right when you say the numbers don't matter any more. They're just averages and probabilities and statistics and Joe is a unique little boy who is fighting his own battle.

Trazzletoes Wed 18-Sep-13 17:30:26

Buffy I know you are, you lovely lady, you. You don't have to say it.

ninja Wed 18-Sep-13 23:37:11

Still with you and the amazing Joe - I think of you often and all that you've been through in the last year x

BIWI Wed 18-Sep-13 23:40:36

Oh Trazzles. I am sending you and Joe huge hugs. So fucking frustrating not to be able to do anything else sad

MrsShrek3 Thu 19-Sep-13 00:10:41

Also still here with Team Trazzles. Delurking to bookmark :-)

LuisSuarezTeeth Thu 19-Sep-13 01:22:10

Thinking of you all, sorry if that sounds trite, not meant to be, just am.

ChippingInNeedsSleepAndCoffee Thu 19-Sep-13 01:46:48

Hi lovely, I lost the last thread and I can't do any searches, so couldn't 'find you' (tech says he can't fix it, but frankly I think they disabled it - I must have been misbehaving shock. It's bloody annoying though).

It sounds like you'd had a rough time (again) sad

Always thinking of you all & keeping my gingers crossed
xxx

Chipping I can search, message me on fb anytime you want a link to anything.

Thinking of you and J xx

How utterly frustrating. Hang tough.

ChickenLickenSticken Thu 19-Sep-13 19:38:15

Still splodging from Essex having sadly followed from the start.

Trazzletoes Thu 19-Sep-13 20:17:16

Chippingin here is the last thread.

Chicken big up the Essex massive x

Well, I think I've now complained to every single member of medical staff I have come in to contact with. It appears to have been well-documented grin. Without exception they have agreed that I wasn't being daft, generally that they would have started antibiotics but for different reasons than the Dr on Monday night, and that the Dr and both nurses were bonkers for making us wait for Joe's blood count to be repeated when it had been done 8 hours before.

All his blood cultures and, erm, other things have come back clear (ahem, as I expected) so the antibiotics have been stopped which I hope means his tummy upsets will also start to settle.

He has just been awake for an hour with a poorly tummy and being sick. Thankfully that now seems settled and he's fast asleep again. Despite being cross with me for watching TV grin how dare I when I've been forced to watch cbeebies non-stop for the last 3 days...

He's been on Iv fluid since admission too as he was dehydrated, but that's also stopped now. He's being monitored overnight and if he stays ok we can go home tomorrow. It's been a very long week because DH has been away all week on a conference - back tomorrow. I've not seen DD since Monday evening - the longest we have ever been apart. My heart aches to see her. Plus I'm going stir crazy being stuck in with Joe. I've got backache from the camp beds and I need fresh air. I was out for an hour earlier but its very intense in here.

I'm ashamed to say I've lost my rag at him several times to the point of healthcare workers suggesting I leave. It's difficult though when his clothes are dangerously dirty and he is going mad and screaming and refusing to allow anyone to take them off and clean him up.

Very much hoping we can get out tomorrow and will get a pass to not have to return if he gets a temp.

bobkate Thu 19-Sep-13 20:28:09

A tough week for you Trazzles sad - really, really hope you get to go home tomorrow for a little bit of home time. Big hugs xx

ClockWatchingLady Thu 19-Sep-13 20:47:11

Well done asserting yourself with medics, etc. - your instincts are clearly great, and serve Joe excellently. As ever, Trazzles, you remain awesome (and human, in direct proportion to your awesomeness... losing your rag sometimes has got to be par for the course in these circumstances when you love someone like you love Joseph).

Thinking of you all and hoping hoping hoping that you get home tomorrow, and get a long cuddle with DD too.

Trazzletoes Thu 19-Sep-13 21:07:12

I was bored last night and re-read my first thread - v odd as I can remember perfectly exactly what happened but had forgotten a lot of the emotion, except that the couple of nurses who were on the day we were admitted frequently refer to the fact that I was extremely upset. Unsurprisingly really, but I think often people suspect there's something seriously wrong with their child and have been trying to get help for months. For us it was a sledgehammer out of the blue. We had no idea. No idea at all.

I'm still massively over-whelmed by the support we have had on here though. It's been incredible.

Trazzletoes Thu 19-Sep-13 21:07:54

I was bored last night and re-read my first thread - v odd as I can remember perfectly exactly what happened but had forgotten a lot of the emotion, except that the couple of nurses who were on the day we were admitted frequently refer to the fact that I was extremely upset. Unsurprisingly really, but I think often people suspect there's something seriously wrong with their child and have been trying to get help for months. For us it was a sledgehammer out of the blue. We had no idea. No idea at all.

I'm still massively over-whelmed by the support we have had on here though. It's been incredible.

Trazzletoes Thu 19-Sep-13 21:57:04

Can I also please ask you to pray ( or whatever else you feel appropriate) for a little girl with the same diagnosis as Joe that's being treated here. She's been going through the high dose chemo and is in a bad way. She's very poorly.

ancientbuchanan Thu 19-Sep-13 22:00:36

Of course. On my list and candles in my mind. Splodging from a train heading south for both of them.

Ragusa Thu 19-Sep-13 22:03:18

Willing the little girl to get better sad

Sorry you have had a s**t week. Hope it improves....

barefootcook Fri 20-Sep-13 02:00:18

Sure. Can you say her name or is it inappropriate?

RatherBeOnThePiste Fri 20-Sep-13 02:14:59

Big hugs lovely, will be thinking of this little girl too Xx

Trazzletoes Fri 20-Sep-13 02:33:04

barefoot I've not seen her parents to ask so don't want to put her name on the Internet but the nurses have said she is very unwell and has been in Intensive Care for a long time.

Secretswitch Fri 20-Sep-13 02:58:10

Trazzles, you don't know me, but I have been following your threads. I am wishing peace for you and and your family. My prayers go out to your son and this little girl you told us about. Xx

barefootcook Fri 20-Sep-13 08:39:41

No problem at all. Will light a candle for the wee girl.

onedev Fri 20-Sep-13 18:46:42

There are no words Trazzle for you & all the other poor parents going through similar - your strength amazes me.

As always splodging & wishing you the very best. Here's hoping you get home & get to give that gorgeous DD of yours a big tight squeeze.

Steamedcabbage Sat 21-Sep-13 11:58:21

Hoping x 1000 that you both got home this weekend Trazzles

Praying for the little girl too ...

SPBisResisting Sat 21-Sep-13 13:24:57

Joining this thread, hopefully for the last time.
Praying for the little girl

Will be praying for the little girl and for your boy Trazzles.

Trazzletoes Sat 21-Sep-13 14:56:59

Yup we got home yesterday afternoon, 90 minutes later Joe got a fever. Called the hospital and they said if it was still over 38 an hour later we were to come in.

It was.

We did.

Thank God the day staff were still there and we were dealt with by a very lovely nurse who knows his stuff and was politely telling the SHO what was and was not necessary. We were out again after half an hour with no extra distress and a promise we could stay home for the rest of the weekend despite temps provided he didn't become very unwell and his blood didn't grow and y nasties in the lab.

Got home and got Joe in to bed for 8pm. He slept through til 7am!!! I got 8 hours sleep uninterrupted! No sickness, no dirty nappies... Top lad.

No word on the little girl. Poor thing.

SPBisResisting Sat 21-Sep-13 15:01:25

Glad he is OK now
Yay to sleep too - how long has it been?

ToffeeWhirl Sat 21-Sep-13 15:05:43

Thank goodness you and Joe managed to get some sleep after all that. It must be lovely to be back with you DD too.

Thinking of the little girl and her parents. It's too awful.

Thank goodness for competent nurses. I bet the SHO was pleased to have her there too. It's rather scary for them at this time of year - just moved to new jobs and big decisions to make. The ones who listen to the nurses are the ones you want treating you and yours.

ancientbuchanan Sat 21-Sep-13 18:02:03

Well done.

At the other end of the age range I am having similar struggles with the health people and my DM who is in hospital. Intensive, exhausting, and so often tbh one knows better than them because one has seen one's parent or child gp through it before.

Hope you are about to enjoy dd

onedev Sat 21-Sep-13 18:53:22

So pleased for you guys & pleased you got some sleep!

Thinking of that little girl.

Quangle Sat 21-Sep-13 20:36:28

Thoughts with you, Joe and the little girl. Thinking of you all and all the other families going through these trials tonight.

LatinForTelly Sat 21-Sep-13 20:56:03

Glad you got home again and got a good night's sleep, Trazzle. Is it too much to hope that you'll all have another peaceful one tonight?

I will think every positive thought for the little girl you spoke about.

Steamedcabbage Sun 22-Sep-13 19:04:36

So glad you got home eventually Trazzles and yay for uninterrupted sleep!

Still sending positive thoughts and prayers for you all and for little girl x

Splodging away still for Joe and the wee girl

goygoy Mon 23-Sep-13 21:11:21

Still lurking, following your updates and splodging xx

Aha! Here you all are.
Just popping in to send love to Teamtrazzles and Joe-over-and-out
X

Trazzletoes Mon 23-Sep-13 21:50:54

Joe is back in hospital for his antibodies and unsettled due to pain, but asleep and on lower pain meds than before when they still haven't been enough.

Oh God, I don't even know how to type this. The little girl was too poorly and the medicines didn't do enough.

It is so utterly horrendous that there are children dying because of the treatment they are given. We have no choice at all. If you don't treat your child, they will die. If you do, the medicine we give them might just make it quicker.

NomDeClavier Mon 23-Sep-13 22:10:20

Oh trazzle the poor little girl and her poor family sad

The treatment is brutal, the illness is worse. You make the best choices you can for your child. That's all you can do. That's what the little girl's parents did. You have to try to save them. I think any of us would make the same choice they did Trazzles, the same choice you have made. You're right, it's not a choice. It's what has to be.

May she rest in peace. Will be praying for her parents tonight and for you. Joe got prayed for this morning smile It's your turn now.

GoingGoingGoth Mon 23-Sep-13 22:24:03

Thinking of you Trazzle, you're doing what you have to.

CoteDAzur Mon 23-Sep-13 22:28:52

You do what you have to do, Trazzle. Be kind to yourself. The treatment is Joe's best chance and it will work for him.

Steamedcabbage Mon 23-Sep-13 22:36:35

Yes it's no choice at all. Thinking of you Trazzles
And still praying x

Trazzletoes Mon 23-Sep-13 23:25:40

I know, I know we've done the best we can for him. And this little girl was behind us in the treatment plan so its from a bit Joseph has already had. It's just so bloody unfair for her family. Why her? I just don't want another family to ever have to live with this. It's just utterly utterly shit.

ancientbuchanan Mon 23-Sep-13 23:55:46

Trazzle, it's shit. My thoughts and prayers for her family, also those and my special splodges for Joe, you and your family.

Focus on the love you have, if you can, the rest us unbearable.

onedev Tue 24-Sep-13 00:27:48

It truly is shit. I don't know what else to say. Thinking of you.

ChickenLickenSticken Tue 24-Sep-13 06:48:29

Oh trazzle. That poor little girl and her family. And you guys - it must be horrifically too close to home for you. It is SO shit but you are all doing the best you can, and these aren't real choices.

Wishing you and joe a calm and comfortable day ahead.

BuffyFairy Tue 24-Sep-13 14:51:39

Oh Trazzle, so sorry to read that. My heart goes out to that little girl and her family. I will ask my church to pray for her.

There was no choice, you have to try.

SPBisResisting Tue 24-Sep-13 15:42:29

Yes it is Shit. No family shoulf have to go through it.

ClockWatchingLady Tue 24-Sep-13 16:00:03

Trazzle, so sorry to hear about the little girl.

Hope you're going OK.

ClockWatchingLady Tue 24-Sep-13 16:00:59

(doing OK)

minmooch Tue 24-Sep-13 16:16:18

Oh Trazzles that's very sad news sad my thoughts are with the little girl and her family.

I hope Joe is more comfortable.

Much love always xxxx

Trazzletoes Tue 24-Sep-13 21:23:22

I know we had no choice. Her family had no choice either. You can't do nothing. Not when there's a chance of clearing it completely. You know they may not survive the treatment. But you kind of put it to the back of your mind. It just brings home how very lucky Joseph is to have got this far.

He was in a bit of pain yesterday but his pain relief didn't have to go as high as last time and he was still more settled though still uncomfortable.

He's been fine on slightly lower pain relief today. He's done a lot of sleeping but has been really cheery this week.

I've just realised I didn't tell you what happened over the weekend!!! This weekend in the last cycle we got an extra day's break because of the bank holiday and Joseph so needed it. He was quite unwell so we weren't expecting much this weekend especially after he had been poorly with the antibiotics.

Saturday morning he asked to go to the park! We agreed to take him on Sunday and went to our local stately home. He had said he wanted to go on the slide and the swings and I was, like, yeah yeah yeah, I've heard that before... He went down the slide 5 times!!! He needed help to climb the steps but he did it!

Saturday morning he had also asked for a roast dinner for lunch. Again we agreed o. Sunday. I cooked my first ever roast (DH cooks at our house but wanted to watch the football...) and Joe ate some chicken. Finished the chicken on his plate and asked for more!! It was so lovely to share a meal with him. I can't remember when he last actually took pleasure in eating - I think it may have been January. I may have cried a little. Tiny steps at the moment but, although progress is slow, it is there.

SPBisResisting Tue 24-Sep-13 21:24:58

not surprised. seeing him eat a good meal and demand more must have been amazing

Ok first time that a child on a slide and a roast chicken have made me cry. What a star he is! smile

ClockWatchingLady Tue 24-Sep-13 21:31:18

That's brilliant Trazzles grin
Slide x5 AND chicken - not surprised there were tears.

Trazzle, what a lovely gorgeous weekend! DH is the roast cooker in our house too we tend to do them on the BBQ and I'm so happy that Joseph got to do something so enjoyable and kid-like going on the slide.

That poor little girl. Unutterably sad and so unfair.

Incapinka Tue 24-Sep-13 21:59:59

More splodges from Dorset. Tears brought to eyes by Joe on a slide and having more roast chicken. There are so many of us willing him on his quest and it is fabulous to hear these steps that he is taking.

And am so sorry for the poor girl. I hate the disease and its many disguises and just wish that something can be done to make the treatment kinder with even higher success rates. Thoughts are with their family and to everyone who is affected one way or another by cancer
Big splodges and crossed gingers

Steamedcabbage Tue 24-Sep-13 22:28:49

Oh that's so great that Joe's regaining his appetite for food and play Trazzles! What a trooper.

GoingGoingGoth Tue 24-Sep-13 22:40:00

Brilliant news Trazzles

ancientbuchanan Tue 24-Sep-13 22:49:09

Lovely chicken slide news.

onedev Wed 25-Sep-13 00:56:56

Tears here too at the slide & chicken! Go Joe - he really is a little star.

BlackberrySeason Wed 25-Sep-13 01:33:46

I cried too - go Joe with sliding and eating! What a brave boy!

barefootcook Wed 25-Sep-13 04:53:46

Lovely news about the slide and the chook. He must be feeling quite well.

ChickenLickenSticken Wed 25-Sep-13 06:02:33

Brilliant strong joe, fab images of him whizzing down the slide and tucking into mummy's dinner :-)

ThermoLobster Wed 25-Sep-13 06:36:10

Don't always post but try and keep up with Joe's journey. Love to you all. Poor little girl. So unfair.

NomDeClavier Wed 25-Sep-13 08:08:59

What progress! And well done you on cooking such yummy roast chicken smile

bobkate Wed 25-Sep-13 21:57:13

So very sorry to read about the little girl - her poor family. Such a waste of a little life sad.
Delighted, though, to read about Joe's pleasure from sliding and roast chicken. Still splodging away for you all x

Trazzletoes Wed 25-Sep-13 22:05:38

Thanks. J has had another good day today. His pain relief was reduced but he still coped well with it. He's been relatively bright, even sitting on his own for half an hour while I took the car in for its MOT.

Everyone seems pleased with his progress and his Social Worker has arranged for us to have a CLIC Sargent volunteer to come and play with the kids for a couple of hours a week so I can get a bit of a break. Hopefully they will take to her.

DH called earlier to say that there was a large lump in Joe's abdomen. The Doctors haven't managed to have a proper feel but hoping its just his tummy muscles and trying to convince myself that's the rational explanation. I hate this. I hate that every twinge, every ache is going to drive us crazy.

janey68 Wed 25-Sep-13 22:19:46

Haven't posted before but have followed your thread.
Worrying but totally natural that every lump and bump will cause you anxiety... I think anyone who goes through a traumatic journey as you're doing will always live with some degree of underlying fears.
So pleased that Joseph is feeling brighter and stronger- all good signs; what a little star you have

NomDeClavier Thu 26-Sep-13 10:18:27

It's all that chicken he ate grin

Continuing to think of you all and praying extra hard that this lump is nothing sinister.

<sobs happy tears at chicken slides>

sad that every bump and lump causes you all anxiety. I just wish it was different for you all sad

Gingers crossed for the CLIC Sargent volunteering being a proper Mary Poppins.

ancientbuchanan Thu 26-Sep-13 15:09:45

Trazzle, what a mixed bag. Great about pain relief and being able to sit by himself, great about clic, and then the lump and worry.

Splodge for them all. Am sitting in sight if a cathedral and if I cam slope off will light a candle there, otherwise it's in my mind.

barefootcook Thu 26-Sep-13 22:23:58

Not another thing! I hope the lump is what you suspect and that you get a little bit of free time soon. Thinking of you guys a lot.

Trazzletoes Fri 27-Sep-13 00:56:07

General consensus has been that he has just had a very very full bladder!!! It's been an ongoing problem during these weeks but good to know nothing serious grin

Tomorrow morning ( or I guess this morning now) is the year anniversary of multiple symptoms and everything starting to happen. We were so happy a year ago. So naive. So stupid. We thought we had all the time in the world.

barefootcook Fri 27-Sep-13 07:52:39

What a relief! I hope this year brings a perfect result.

ToffeeWhirl Fri 27-Sep-13 09:24:50

Phew, thank god the lump was nothing serious.

I'm so sorry for your shit year. You weren't naive or stupid to assume you had all the time in the world though. We all think and hope for the best and your son was terribly unlucky to get this thing. He is very, very lucky, though, to have you as his mum. You have fought for him and supported him every step of the way.

Let's hope that this time next year finds Joe leading a normal life, going to school, making friends and entertaining you all with his fabulous sense of humour ("Over and out" really made me laugh smile).

Phew.

I think Toffee has summed up my thoughts perfectly.

Gingers cross that he continues to empty his bladder in a way that doesn't cause his parents anxiety grin

tholeon Fri 27-Sep-13 13:28:42

Oh bless you, the anniversary must feel difficult and mixed. I loved hearing about him on the slide though. I am glad you are getting a clic volunteer, I hope she is lovely xx

Pleased to hear the cause of lump is nothing to worry about. smile

GoingGoingGoth Fri 27-Sep-13 16:58:40

Another one seconding Toffee, hopefully soon the full bladder incident will be something to laugh at. My first reaction was the lump was the chicken dinner, but didn't want you to think I was making light of it.

It's understandable that you worry over everything, I know I would.

ancientbuchanan Fri 27-Sep-13 22:53:54

So glad about the lump.

ajandjjmum Sat 28-Sep-13 09:41:38

You were never stupid Trazzles - you were living your life as we all do. Thank goodness that the last year is now behind you, and pray that it's all upwards from here.

WheresMyCow Wed 02-Oct-13 09:17:30

Don't post often but have been lurking and following Joes story from the start. Another one here who found everything went a little bit blurry after reading about chicken and slides...well done Joe [smile[

Sending splodges and keeping gingers crossed for more good days x

Trazzletoes Wed 02-Oct-13 17:39:44

Thanks smile it was a year yesterday that we went to hospital and a year this morning since Joseph's first thread. The Doctor told me Joe had cancer while DH was still at home. I didn't want him to know before he drove in so had. 90 minutes sat on my own trying to understand what was happening. I will never forget the support I got (and have continued to get) from you lovely lovely people. I couldn't tell anyone but you were all there for me.

What a different story today - I've been at work but Joe has apparently been playing most of the day and enjoying himself until he threw himself off the sofa and got a lump on his head. I don't know whether to cry or laugh that he's got a normal childhood injury from over-excitement.

He managed to get through the antibodies alright last week, just about! And is enjoying being home again.

Almostfifty Wed 02-Oct-13 17:53:57

I'd laugh. He's lovely Trazzles.

mynameisnotmichaelcaine Wed 02-Oct-13 18:32:44

Awwww. Lots of love.

nemno Wed 02-Oct-13 18:47:14

Thank you for your updates and sharing your story Trazzles. thanks

ancientbuchanan Wed 02-Oct-13 18:53:19

Laugh, with a slightly moist eye.

And you were at work! Wow, fab.

Well done, keep going, and remember that it is this sort of support that keeps us all human . You do it for various of us too.

Ragusa Wed 02-Oct-13 18:56:24

I can't believe it's a year.... but I bet it's been the longest year of your life.

Glad he's enjoying some rough and tumble.

TwentyTinyToes Wed 02-Oct-13 19:11:45

Oh bless Joe, great to hear about him playing grin

Cancer attacks 'normal' life. Today Joe bumped his head whilst you were at work. What a normal, normal thing to happen. Bloody well done grin. Here's to more 'normal' days than we can ever count or describe smile

onedev Wed 02-Oct-13 21:31:28

Here here Northernlurker.

barefootcook Thu 03-Oct-13 01:27:47

I'd laugh- it's just a normal everyday event in all homes with kids. He sounds full of beans. Good to hear you are able to go back to work too.

Gaun yersel Trazzle, that is PDB. Not the bump on the head. The rest. You at work, Joe playing. Honestly, I'm so chuffed for a glimmer of normalness.

And you know what? I've learnt a lot from you, your family and Joe. Thank you for sharing with us.

Wishing more normalness and playing. I will continue to light my Joe candle for you all.

ajandjjmum Sat 05-Oct-13 20:32:21

Hope you Trazzles are all having a great weekend!

bobkate Sat 05-Oct-13 22:37:29

Hope Joe is continuing to progress well and enjoy himself at home - still splodging away xx

tholeon Mon 07-Oct-13 06:51:11

Lovely to see that there has been a little bit of normality for you guys xx

Hope you and the Joe-ster have had another week of normal.

Still thinking of you

Haven't posted for a while but never stopped lurking.

I am ridiculously happy that you are managing to enjoy some 'normal days'.

You, Joe and all of Chez Trazzle are remarkable and so often in my thoughts.

Always splodging x

Trazzletoes Mon 14-Oct-13 12:44:58

Hi there, apologies, I fell off my own thread!

We have had a lovely fortnight at home. On Saturday we took the DCs to Thomasland - it was a day out we had arranged when he relapsed (but had to postpone due to bad weather) - going to see Thomas was on his list of things to do when he was in high dose and so poorly. He had a fab time - it was so nice and we really appreciate having it as a positive memory. It could still go horribly wrong but the day itself could have been so very different.

Joseph himself is doing well at the moment. He still doesn't eat consistently or very often. He is enjoying popping in to nursery and making friends. I'm off to start looking at schools for him for next year as well - another thing which could otherwise have been very painful knowing there was a reasonable chance he may not live that long.

Obviously we don't know what the future holds, but I am so grateful that he is ok at the moment.

We're in hospital at the moment for Joe to have the first day of injections today. Currently waiting for a platelet transfusion (thanks) and then hopefully injection and then home after an hour.

And then begins the wait for the fever and back in to the ward.

Slimchance Mon 14-Oct-13 13:55:59

I fell off your thread too Trazzles! [SC here]

Just wanted to say "yay to normal childhood injuries!!" grin

So great to hear that Joe is able to go to nursery now and make friends as well.

Hope injections go OK today x

onedevil Mon 14-Oct-13 18:48:35

Thomasland is fab - glad you all had fun! So pleased things are progressing well. Thinking of you & sending you my very best wishes as always!

Trazzletoes Mon 14-Oct-13 20:36:29

His temperature is 37.6. I'm not hopeful.

Am so tired, I could really do with a full night in my own bed.

Do appreciate how fortunate we are, though , that he is getting this set of injections.

Torn in two !

ancientbuchanan Mon 14-Oct-13 21:06:38

Oh Trazzle, sorry to hear about temp, but glad to hear about Thomas and nursery. You've done so well keeping him a normal little boy in awful and abnormal circs.

Splodging on the train for you, for his temp to come down and sleep to arrive for you.

ancientbuchanan Mon 14-Oct-13 21:06:56

Oh Trazzle, sorry to hear about temp, but glad to hear about Thomas and nursery. You've done so well keeping him a normal little boy in awful and abnormal circs.

Splodging on the train for you, for his temp to come down and sleep to arrive for you.

ancientbuchanan Mon 14-Oct-13 21:07:50

Obv double Splodge! Sorry.

Well I'll be crossing my gingers for a lower temperature and some sleep dust for you.

My heart feels all warm and mushy that you're able to enjoy some normal things after all you've been through and positively melts that milestones like applying for school can be done with hope in your heart.

Trazzletoes Mon 14-Oct-13 23:54:39

Thanks for the crossed gingers...

Didn't work.

J and I are up at the hospital waiting for the Doctor to come and stick needles in his arm and then find out what the heck is going to happen tonight * sigh*

Ragusa Mon 14-Oct-13 23:57:03

Ah balls. Hope you aren't at the hozzy long.

onedevil Tue 15-Oct-13 00:47:27

Oh that's shit - hope they can sort things quickly & you're both able to get some rest. Good luck! xx

barefootcook Tue 15-Oct-13 01:52:28

Lovely to hear about Thomasland- what a great day out- especially as he was well enough to really enjoy it. Hope you got some good photos. Also, hope the school hunting goes well. I am sure everyone will be very kind and you will find the right place for Joe. Hope you get home soon to your own beds.

Awwwwwwww <channels her inner 3YO> <stamps foot> that isn't fair.

Sorry Trazzles

<hard stares at gingers and goes back to splodging>

Slimchance Tue 15-Oct-13 09:07:27

Hope you got some sleep Trazzles

Hope you guys are doing ok.

Trazzletoes Tue 15-Oct-13 20:19:19

Hi yes, thanks, had a sensible Dr on last night who checked with the Consultant and sent us home after taking some blood samples from Joseph to check for infection. In bed by 12.45am.

The upshot of all that is that, although he has had another temperature already tonight, because he is basically well in himself and has already had the blood samples taken, he can stay at home with a dose of paracetamol unless he becomes unwell.

Tomorrow night we will have to go in again though as the blood sam

Trazzletoes Tue 15-Oct-13 20:20:15

Gah!

...blood samples are only good for 48 hours.

He's coping ok so far albeit that he's very tired but that's expected.

ancientbuchanan Tue 15-Oct-13 20:52:18

Well done him and you.

Splodging on a train again.

Well that sounds better than last time. Good to see changes have been made. Bloods and then home is a decent compromise I guess. Why does it always happen late at night though - sods law? Or it it just the time elapsed after the injection? In which case they should shift it to a 7pm slot and you could go home and sleep and then take a feverish child in for bloods in the morning!

God luck looking at schools - how exciting. What's entry like round your way? Are you likely to have a real choice or is it cross your fingers and hope not to get somewhere a bit grim?

bobkate Sun 20-Oct-13 18:29:50

Just checking in and wondering how the wonder boy is doing? And also how are you doing? You must still be so exhausted by this past year I'd imagine but really hoping you're getting some time for you ( if you're needing/wanting it now! )

Trazzletoes Mon 21-Oct-13 20:26:51

Sorry, it's been a massively stressful few days...

Why is the temp always late at night? It's the timing of the injection. He gets calpol an hour before and that holds the fever off for a while - he mostly hits 38 degrees about 7-8 hours after the injection. It's meant to be around 12-1ish which is fine. But generally something gets delayed. Last week we had a lost prescription, deep cleaning of the ward and 2 platelet transfusions delaying things.

The most frustrating time is when you take his temp just as you're getting ready for bed and it just scrapes 38!

This week he gets the jab some time between 11 PM and 2am. But he's also on regular paracetamol so that helps.

He has had a good weekend but another difficult day today . It's the first day of the antibody infusion. He coped well for about 3 hours (a record!) but then started screaming again. He's asleep but unsettled and has an oxygen mask by his face as his pain relief is so high it interferes with his breathing sad

DD is also running a fever at home. This is hugely stressfull. I get texts about her breathing and there's nothing I can do, or even advise. I want to give her a cuddle and make her all better sad

Re: schools. I don't think we have a great deal of choice. Our local school is over-subscribed. The cut-off was just a bit further along our road. We are on the edge of our area of the city (nothing much behind our house) and the cut- offs of the other schools don't come as far as us.

There's 1 school in the next bit along which took everyone who applied last year but I'm nervous - our local comp is very good and has recently changed its criteria to prioritise people who live in our postcode. I'm scared that they may also narrow it in the next few years to prioritise those who go to primary school in our postcode.

Our local school also has limited wrap-around care and because it's so small there's only one childminder that does drop offs and pick ups. No idea how we are going to work it if he gets in. I have enough stress in my life already!

Ragusa Mon 21-Oct-13 20:49:09

Sorry you having a tricksy time. Hope all the temps bugger off soon and that Joe's pain levels improve. Brave little sausage.

Re the schools, nearly all (except religious) give preference to those with a compelling medical or social need above distance, so if there is an oversuvscribed one you would prefer you should be able to make a good case.

<squeezes Trazzles>

Oh that all sounds really overwhelming <sends getting well vibes oop north>

WRT schools. Have you looked at whether Joe could make an application based on special educational needs? At the very least, if your local school is the one for him, there are some very knowledgable posters on MN who would be able to advise how to prepare to appeal should you not get in. And I completely understand the challenges of wrap- around care. I don't understand how there is so much encouragement to get everyone working and so little practical help. With DS1 my BFF had to travel 90 miles to pick him up after school in his second week when I was working away shockhmm

LeonardoAcropolis Mon 21-Oct-13 21:50:41

Hello Trazzletoes, sending lots of get well vibes to both Joe and your DD.

There are some VERY knowledgeable posters on the Primary Education board who could help you with admission queries.

cestlavielife Mon 21-Oct-13 22:42:17

Put in a case for school on socio
medical grounds. Your gp and consultant and specialist nurse can write letters to support
You need close to hOme less stress all round given the difficult year etc etc

LatinForTelly Mon 21-Oct-13 23:37:34

Still thinking of you all, Trazzle. Hoping Joe's pain is as short-lived as possible and that DD gets better soon too. So tough for you.

The poor wee lamb. Hope tomorrow is better for him sad

ancientbuchanan Tue 22-Oct-13 09:27:37

Temperatures are sickening in that they always go up st night anyway, and when you have the extra boost to them late it must be infuriating. So sorry for poor Joe, and you, and DD.and your DH.

Yes, get the medical crew working on the sen thing. It won't be the normal sen because he doesn't sound as if he has any learning difficulties whatsoever, so you may need a bit of extra advice. But the MNrs will be able to tell you the best way to go.

Quangle Tue 22-Oct-13 09:29:53

Trazzles, this sounds so horrible. Poor little mite to have to have so much pain control. Thinking of you all.

ClockWatchingLady Tue 22-Oct-13 11:06:11

Oh Trazzles, it sounds so very hard sad

Echo what others say about medical grounds for schools.

Thinking of all of you, and of you in particular. X

Oh gosh, very very stressful, you poor thing. Hope all resolves in the best possible way.

bobkate Thu 24-Oct-13 21:34:48

Thinking of you, agree it all sounds like added stress you could do without. Hope there's some bright news very soon for you x

Trazzletoes Fri 25-Oct-13 07:09:32

Hi there, Joe has had a reasonable week this week and has coped ok with his meds. We are still hoping to get him home over the weekend. Since July he has been on a tube feed called Neocate. We have to make it up ourselves from powder several times a day which is time-consuming and quite a pain. But it's a feed that is very easily digested - broken-down amino acids or something.

Anyway, once Joseph is home we are going to try putting him back on his old feed! So much more convenient as it just involves attaching a plastic tube to a sachet and going. Also it is higher calorie so he needs less of it, so has less time connected to it and more opportunity to move around. I am so so hoping that his digestive system can cope with it.

I can't believe there's only 6 more weeks of treatment, all being well!

ClockWatchingLady Fri 25-Oct-13 10:39:33

Wow, 6 weeks! I'm guessing that feels exciting/nervewracking/unprocessable/incredible/indescribable?
So, all being well, treatment finished before Christmas...?

Sending lots of positive get-Joe-home-over-the-weekend vibes. Hope transition back to the old feed goes smoothly.

bobkate Fri 25-Oct-13 16:37:20

That sounds promising re the feeds - let's hope his tummy can tolerate it and only 6 more weeks - what a great end goal to have smile Fingers crossed it all pans out that way xx

ajandjjmum Fri 25-Oct-13 20:43:08

Glad to hear there's light at the end of the tunnel! smile

I hope that precious little tummy can cope with it too.

I continue to think if you all lots. Every morning when I get my Yorkshires out of the tin and pop on the kettle in fact wink

Hope super-Joe gets home for the weekend.

What happens after six weeks? Apart from the fact you all collapse in a heap before coming up with a new routine.

FunnyRunner Fri 25-Oct-13 21:27:07

Still rooting for your lovely Joe Trazzles. You are doing so amazingly thanks

barefootcook Sat 26-Oct-13 06:24:50

6 more weeks!! Wow- I really hope it goes without a hitch. XXX Thinking of you as always.

onedevil Sat 26-Oct-13 14:07:32

Another thinking of you. Gingers crossed for a smooth 6 weeks!

Trazzletoes Sat 26-Oct-13 16:38:52

Well, he's still in hospital... His blood pressure and oxygen levels got too low last night and he had to have an oxygen mask on his pillow.

One of the side effects of the treatment is that it can make your capillaries leak, so fluid ends up in all sorts of places where it shouldn't be. This time it seems to be round his lungs which is making him breathe more rapidly but less effectively. Until he starts dumping the water, his oxygen levels will stay low and we will have to stay in sad .

He's had a diuretic and has dropped around 500ml so far! When they weighed him he was carrying at least 2 extra kgs!!!! We were hoping to be out by mid-afternoon but his O2 levels are still bouncing around and he is being reviewed at 6pm.

onedevil Sat 26-Oct-13 16:43:11

It's so tough for you all - hope the 6pm check goes well & you get home.

Trazzletoes Sat 26-Oct-13 19:55:42

The Dr walked through the door and, predictably, Joseph's oxygen levels plummeted. So we 're staying an extra night (at least).

I know it needs to happen but IT SUCKS!

SHRIIIEEEKFuckingBearBlood Sat 26-Oct-13 19:56:30

X

SHRIIIEEEKFuckingBearBlood Sat 26-Oct-13 20:06:19

X

ajandjjmum Sat 26-Oct-13 20:23:08

I am sorry Trazzles.

ancientbuchanan Sat 26-Oct-13 21:01:34

Oh Trazzle, so sorry, yes it sucks. Bugger.

But we are still Splodging for you. Said prayers for you all today. How is dd ?

Trazzletoes Sat 26-Oct-13 21:51:02

She's much better thanks. Still not 100% but I think this week has shaken her up. She's felt rotten but the 2 people who she should be able to rely on most have barely seen her.

I'm scared we are giving her extra trauma to grow up with. That we are scarring her, that she feels unloved when she is SO loved and so wonderfully precious to us. She is perfect. They both are. I worry that she will grow up always feeling that she is "Joseph's sister". She is such a wonderful person in her own right. I hate not being there for her. She needs us too.

onedevil Sat 26-Oct-13 22:04:34

She will know she's loved, no doubt about it. She'll also know that she has a mum & dad who will do whatever it takes to give their children the best possible chance & never give up on them. She'll just feel that as thankfully, she's too young to remember all the crap that you're all having to go through.

She'll also grow up thankful that she has a typically annoying big brother, who drives her crazy, but who she loves with all her heart (& hopefully will have good looking friends!).

So sorry things are so shit - sending much love as always & just wishing there was more we could do for you. xx

BuffyFairy Sat 26-Oct-13 22:20:06

6 more weeks, wow, really hope it goes as well as can be.

Sorry that Joseph has to stay in tonight, hope he's home tomorrow.

Your DD knows you love her and how precious she is to both of you. I know that won't stop you feeling guilty but honestly I doubt she will grow up to remember much, if any, of this time. She has so many people who love and care for her, that's what she will grow up knowing and feeling secure in.

Big hugs x

ancientbuchanan Sun 27-Oct-13 04:12:35

Buffy and One are right. There were big ishoos in my family when I was one to about three and I can't recall them at all, all I can recall early on are the normal toddler things and how lovely it was to sit on my DF's knee and have stories told by him.

Hope you aren't awake at this moment but if you are, know that you are being thought of.

ClockWatchingLady Mon 28-Oct-13 11:23:41

Hi Trazzles. Hope the lovely Joseph's been able to get home now. And, if not, that it'll happen very soon.

DD will know - from all manner of unverbalisable clues - how much you love her. Your and your DH's love for both of your children manages to radiate warmth, intensity, ferocity, depth (I'm sorry for the inadequacy of these words) even over the impoverished medium of an internet forum. DD and DS will feel it every minute of every day.

Trazzletoes Mon 28-Oct-13 13:06:49

He did get home.

For 6 hours.

Now he's back in with a chest infection as of last night.

We 're not on our usual ward and it is extremely stressful.

ClockWatchingLady Mon 28-Oct-13 13:18:32

sad
So sorry you're back in hospital.
And a different ward on top of it all.
Is there any chance they're going to move you to the usual one?

ajandjjmum Mon 28-Oct-13 13:55:35

That's rotten Trazzles - so sorry you're having to deal with a strange ward on top of everything else.

onedevil Mon 28-Oct-13 17:59:43

So sorry to hear that Trazzles, that's crap. Hope it clears up soon.

Ragusa Tue 29-Oct-13 19:46:03

How you getting on Trazzles? How's Joe sad?

Trazzletoes Tue 29-Oct-13 20:06:08

Tired and frustrated. Still in isolation on the "other" ward. A nurse pops in every few hours. And then pops out again.

Still, I'm off to work tomorrow.

Joe is doing ok. The drs have differing opinions on whether he has a chest infection or excess fluid around his lungs. They have him on antibiotics. I think its a bit of both. His temp has stayed down since Sunday night which is good but he needs to manage a whole night without additional oxygen.

He's fine during the day but once he's asleep his sats drop. The drs thought we'd be going home tomorrow but have now said realistically it will be not before Thursday.

I miss my home. My husband. My DD. My sofa... Desp need to tackle the washing pile! I'm just so tired...

DearlyDepartedMrsFinch Tue 29-Oct-13 20:06:34

Gosh trazzles, I remember that very first thread and I always think of Joe when I see your name.

I can't imagine how difficult life is for you and your family at the moment, but know that I am wishing you all well and keeping you and your beautiful boy in my thoughts.

Trazzletoes Tue 29-Oct-13 20:07:41

Thank you thanks

ancientbuchanan Tue 29-Oct-13 22:34:09

Yup. Remember that map of lights. They are still there for you all..

Hope you get back to your ward if you have to stay. Wish I could do your washing for you.

Just popping in with a long overdue splodge (temporarily relocated to Brighton, but normally in Malvern)

I still think about you and Joe every single day, every time I see a little cheeky boy, every time I see/hear/read/think about blood donation, every time I see a snail blush. He has a little place all of his own in my heart.

Thank you for sharing him with us all, and, as always, gingers crossed smile

Splodging in Bath for you and your boy too.

I think about you all everyday too. I think of you when I have a couple of tea, when I light my candle and when my Ryan is being cuddly which isn't that often to be honest.

I wish I could gift you a long sleep and do something to lighten your burden.

SHRIIIEEEKFuckingBearBlood Wed 30-Oct-13 08:17:30

x

SHRIIIEEEKFuckingBearBlood Wed 30-Oct-13 08:18:03

(shorthand for "everyone else has said what I'm thinking but I'm still thinking about you and Joe")

minmooch Wed 30-Oct-13 14:37:51

Me too Trazzles I often think of you and your little family. It's horrible being torn between your children I spent 5 and a half months in hospital with eldest DS. The ward was closed to school aged children for most of that time (Noro virus risks) and I only managed to get home one night a week to see my other DS. He was older so he understood butit was more emotionally hard for me. We got by using skype.

Much love to you and yours. Xxxx

bobkate Wed 30-Oct-13 15:35:33

Such a trying time for all of you sad Still splodging and thinking of you all often. xxx

LatinForTelly Wed 30-Oct-13 18:17:28

Thinking of you. Very much hope you get home tomorrow xx

tholeon Wed 30-Oct-13 18:30:42

Just adding to the chorus of people still thinking of you. Your Dd will be ok. She knows she is loved, children just do, even if crap that life throws at us stops us giving them the life we want to. Love to lovely Joe. I hope you are all together at home again soon xx

Trazzletoes Thu 31-Oct-13 01:21:22

Quick update: we're all at home tonight (for how long though?). Joe did marvellously last night and didn't need oxygen so was discharged today. He is so happy to be home.

HOWEVER he is (and has been) really suffering with D&V - side effects of the treatment. He was thin to start with. He's lost a ton of weight this week and all his bones are jutting out. Unless his stomach speeds up and his gut slows down in the next 24 hours of so, he will be straight back to hospital for fluid and nutrition. He needs it but that will mess up his liver again and delay his treatment.

Going back to hospital now will be a huge setback for him. Please - I know I ask a lot of you all - but any prayers/ positivity etc is so welcome at the moment.

ChippingInNeedsANYFUCKER Thu 31-Oct-13 02:19:18

Yay - try to live in the moment tonight flowers Snuggle into your bed and get some sleep x

I know I don't post very often, but I think of you every single day and send you all love & strength.

I feel for the poor little mite - it is such lot for his little body to cope with, if only there was a way we could all take a little bit of his treatment each for him, we would.

I am sending super duper speed up stomach vibes tonight!!

You don't ask a lot, you don't ask very much at all - I wish there was more we could do!

Lots & lots & oodles of love and strength zooming it's way over now!!!

Sleeeeeeeeeeeeeeeep
x

barefootcook Thu 31-Oct-13 02:37:57

Hi Trazzle- I will light a candle and send lots of positive thoughts. Hope things inprove and you can be at home together.

SHRIIIEEEKFuckingBearBlood Thu 31-Oct-13 06:24:39

Positive thoughts your way x

Allthebees Thu 31-Oct-13 06:31:28

I've followed joe's story since the 'start' and think of you all lots. You've come such a long way, sending you love and strength for this bit too.

Come on little dude!

SuperiorCat Thu 31-Oct-13 06:34:16

Love and positive thoughts with you

Millie2013 Thu 31-Oct-13 06:49:32

Buckets of good vibes heading your way xxx

indecisiveandclueless Thu 31-Oct-13 08:02:01

Thoughts and prayers with you and J, keeping everything crossed for his tummy to improve. flowers

AnnaConda Thu 31-Oct-13 08:12:54

Praying for little Joe x

Glad you got home and will be praying you stay there.

ajandjjmum Thu 31-Oct-13 09:01:37

Prayer, love and hugs to you and Joe.

Quangle Thu 31-Oct-13 09:40:30

Thinking of you and hoping Joe can stabilise a bit so you can stay at home, where you should be.

Wishing good days to little Joseph and all of you too.

greenhill Thu 31-Oct-13 10:32:10

Sending positive thoughts your way x

JemR234 Thu 31-Oct-13 10:37:26

Thinking of you and Joseph, I hope his tummy is better soon x

toffeelolly Thu 31-Oct-13 17:51:51

Pray for your little Joe every day Trazzle .x

Twunk Thu 31-Oct-13 18:16:42

Hi Trazzletoes just come over from the Children with Cancer thread to see how you're getting on. It's quite a marathon! I am sending all the positive vibes I can muster towards you and Joseph xx

bobkate Thu 31-Oct-13 19:18:40

Yep more positive thoughts for you and Joe from us here too xx

tholeon Thu 31-Oct-13 19:46:00

Love and prayers, I hope you are still at home. You really don't ask a lot at all. X

Praying for Joe.

Praying for Joe tonight.

TheCountessOlenska Fri 01-Nov-13 18:55:30

Thinking of you xxx

LatinForTelly Fri 01-Nov-13 23:40:10

Sending every positive thought x

FunnyRunner Fri 01-Nov-13 23:46:06

Praying for you. Praying hard xo

barefootcook Sat 02-Nov-13 04:21:26

A candle is burning for your gorgeous Joseph. Hope things are improving.

Trazzletoes Sat 02-Nov-13 09:46:27

Thank you all - he really turned a corner yesterday. Everything is going in and staying in. Or at least coming out at a more normal rate! He's so much better in himself and more like his we thought he would be.

Thank goodness his Consultant is sensible - once it looked like he didn't actually have a chest infection, his antibiotics were stopped completely which is giving him a chance to recover. Otherwise he would still have been on them til next Wednesday with little time for his gut to recover before the next treatment.

Thanks for all your support.

Chathampocket Sat 02-Nov-13 10:52:06

Hurrah! So glad things are going well - lots of love to you and J x

ZingWantsCake Sat 02-Nov-13 10:59:49

lurking on and off - but wanted to say I'm so glad he is getting better!thanks

ChippingInLovesAGoodBang Sat 02-Nov-13 11:25:31

YAY grin

Loving his consultant, a nice bottle of wine for that man!

brew & cake for all the Trazzels this morning!

toffeelolly Sat 02-Nov-13 12:12:24

Great news

ancientbuchanan Sat 02-Nov-13 13:07:01

Good news.

barefootcook Sat 02-Nov-13 18:09:51

No problem! Hope the rest of the weekend goes well.

onedevil Sat 02-Nov-13 18:17:26

Glad to hear some good news. thanks & wine for the weekend. xx

Woohooo! Hooray for joe's tummy realising what it should be doing and three cheers for sensible consultant!

Now, I haven't nagged for a while, but if anyone is thinking of giving blood and is a bit scared, please think of wonderful Joe and children like him, who put up with MUCH more than a teeny tiny needle and some weak squash every day of the week.

Please give blood wine < not blood smile

Nag ends. Thank you

tholeon Sat 02-Nov-13 22:42:46

Great news x

Brilliant news grin

Fab news. Well done Joe.

bobkate Sun 03-Nov-13 14:14:13

So pleased to read this, have been hoping you've had some better news. xx

Brilliant! Norks, thanks for the reminder, I seem to remember October being the next appointment time for me so I'm already over.

ClockWatchingLady Mon 04-Nov-13 20:10:56

Thinking of you all every day Trazzles.

What great news! X

Ragusa Mon 04-Nov-13 21:35:21

Oh good boy. Well done Joe smile And Trazzle for getting through it all.

Good reminder from Norks - I can now give blood again, for the first time in years. Think I have some wierdy blood group so I really should. Hopefully I won't pass out this time smile smile smile.

CelticPromise Mon 04-Nov-13 21:54:26

It's been a while since I caught up with Joe's story. Just checking in to send some love. I will say a prayer for you all.

Trazzletoes Tue 05-Nov-13 11:54:37

I've just cut his hair grin (badly)... First time in over a year!

YAY for stealth
YAY for ragusa

Bloody brilliant!

ancientbuchanan Tue 05-Nov-13 22:38:48

Hair cut?

Wow!

Moisture come a me eye.

bobkate Tue 05-Nov-13 23:17:33

Your last post Trazzles has brought a smile to my face. Lovely x

ninja Tue 05-Nov-13 23:46:15

I just couldn't ignore the post about the haircut. What a long way he's come x

Trazzletoes Wed 06-Nov-13 22:26:48

You would grin if you saw what a botch job I've made of it!

He's had a great day today (while I've been at work) - eaten a bit of banana, half a fish finger and 6 baked beans - fab! And spent over 90 minutes at nursery, lots of that time without DM being there, doing painting, building, making friends... MAKING FRIENDS! Tomorrow he's even planned to ask people what their names are grin

bobkate Wed 06-Nov-13 22:51:51

grin Way to go Joe grin - lovely, lovely, lovely to read. Wonderful to hear he had such a positive and fun day smile Bet you're made up! x

ancientbuchanan Wed 06-Nov-13 23:02:36

Oh wow, again. Food and friends. Just lovely.

onedev Wed 06-Nov-13 23:30:10

He's a star!

barefootcook Thu 07-Nov-13 02:39:27

That's great- making friends- wow! I'm sure they'll love him.

saffronwblue Thu 07-Nov-13 03:24:15

Go, Joe! So gorgeous to hear of him having nice times - and what great social skills he has!

ajandjjmum Thu 07-Nov-13 08:42:46

Brilliant - hope he gets to know lots of names today!!! smile

ClockWatchingLady Thu 07-Nov-13 09:59:54

Go, Joe! Brilliant.

greenhill Thu 07-Nov-13 10:15:35

Brilliant, long may it last smile

tholeon Thu 07-Nov-13 16:36:54

Lovely! X

Oh you're meant to ask people's names. This is where I am going wrong.

So pleased he had a good day. And what a lunch gringringrin

Trazzletoes Fri 08-Nov-13 12:55:07

We're at the hospital today. He's very very pale so we've come to find out whether he's anaemic and needs a blood transfusion.

Hope he is ok x

ancientbuchanan Fri 08-Nov-13 15:05:29

Oh, poor you, how worrying. Splodging for you. Let us know.

Trazzletoes Fri 08-Nov-13 15:12:46

We're home. His blood is just good enough(!).

ajandjjmum Fri 08-Nov-13 17:08:05

Happy weekend Trazzles!!!

onedev Fri 08-Nov-13 18:31:11

Yeah!! It must definitely be wine time then!! winethanks

bobkate Fri 08-Nov-13 22:07:19

Thank goodness for that. Well done Joe's blood smile Hope the weekend is a lovely one for you all x

Bloody Nora! He keeps you on your toes!

So glad he's ok and you're home.

Grab the gin Trazzles

ancientbuchanan Sat 09-Nov-13 15:51:45

Deo gratias.

Now relax as far as you can.

onedev Sun 10-Nov-13 21:13:36

Hope you've all had a lovely weekend at home with plenty of rest & cuddles.

Trazzletoes Mon 11-Nov-13 14:23:56

We ended up having quite a busy weekend as a lovely friend had let us use her holiday cottage by the sea.

Back in to hospital this morning for a raft of tests and Joe will be starting his last course of injections this afternoon. It was a bit touch and go as he's anaemic and his blood results should have been a bit higher but thank goodness they're pushing on regardless. He needs 2 transfusions this afternoon though so waiting for those. He can't have his injection until after the first one so every minute hurts me at the moment! I'm impatient.

Joe managed to graze his face on a seemingly innocuous children's game (I think it's still in production but definitely one I played as a child) - not technically a board game but that kind of thing. Bet you can't guess which one! (Relieve the tedium, please!)

ABitterPIL Mon 11-Nov-13 14:52:43

Good luck with it all. Transfusions are amazing! They will make him so much stronger x

Trazzletoes Mon 11-Nov-13 14:57:02

Oh goodness, totally forgot the thanks to the blood donors.

Trazzletoes Mon 11-Nov-13 14:57:24

And the blood donor botherers!

LatinForTelly Mon 11-Nov-13 15:01:52

Good luck for the transfusions and last set of injections. Everything crossed that they go smoothly.

Can I have two guesses? Operation or Kerplunk?

pinkbraces Mon 11-Nov-13 15:02:19

Lurker here - Ive kept up with all your threads but very rarely post. Still sending you lots of positive vibes and love

ABitterPIL Mon 11-Nov-13 15:03:08

I guess hungry hippos

duchesse Mon 11-Nov-13 15:11:56

Did he get synthetic turf burn from Subbuteo?

Trazzletoes Mon 11-Nov-13 15:12:41

No, no and no grin

You're on the right lines but you need to think of something more innocuous - no flying balls(!), sticks or tweezers.

Trazzletoes Mon 11-Nov-13 15:13:20

Laughing at subbuteo - he doesn't quite have the coordination for that.

BuffyFairy Mon 11-Nov-13 15:28:28

Good luck for Joe's transfusions and injections this afternoon.

Guess who?

Trazzletoes Mon 11-Nov-13 15:42:14

Buffy you cheat! You read that on Facebook [ grin]

Yes, Guess Who. Not in general a game that needs a health warning. Only my son could graze his face on it.

BuffyFairy Mon 11-Nov-13 17:06:09

Hand on heart I hadn't seen that FB update grin loved the silly walking photo.

Definitely not a game I'd imagine getting injured by.

How's Joe doing?

bobkate Mon 11-Nov-13 21:34:06

Hope today went ok and all as it should xx

Trazzletoes Tue 12-Nov-13 00:24:06

So he got platelets today at least. By the time they and his injection were done, the clinic would have closed well before he finished his blood transfusion (they take 3(!) hours) and as it wasn't desperate I suspect the nurses had better things to do than find a ward to take Joe for an hour so they sent us home. Back early tomorrow to get the blood in.

And, of course, back in now anyway as he has a temperature. We'll see what happens...

Trazzletoes Tue 12-Nov-13 02:34:46

Well, time for an update. Joe was neutropenic this morning. This means he didn't have enough white blood cells to fight off an infection. Standard procedure is if a child is neutropenic and they get a fever = automatic antibiotics.

Joe is fine in himself. I am as sure as I can be that he doesn't have an infection. But they have rerun his bloods. If he's still neutropenic ( likely) then he will be on strong antibiotics for several days. This will be a massive step backwards for him. Massive. If he's not neutropenic ( considerably less likely) then we may be able to go home.

I'm so tired. I am so fucking fed up of this shit. I know its 4 weeks left but I can't see how I'm even going to make it through tomorrow. I'm just exhausted. I've got nothing left. I just can't take this anymore. I can't cope with the Doctors repeatedly making Joseph more and more sick. I'm just tired of having to live with this. I just don't want to do it anymore.

madwomanintheatt1c Tue 12-Nov-13 02:45:38

Oh Trazzle. Chin up and try and get some sleep xx
(())

FixItUpChappie Tue 12-Nov-13 02:56:14

It's such shit Trazzles but you've all come SO far - hang in there and as madwomen says, try to have a cup of tea and get some sleep.

Xx You and Joe are often in my thoughts and prayers

Trazzletoes Tue 12-Nov-13 03:00:24

I can't sleep. I'm sat on a chair like we used to have at school.

May be going home after all. Still waiting on one more blood result. He wasn't neutropenic this morning, just nearly neutropenic.

I've been up for 22 hours now. Joe usually wakes up being sick at around 5am so if I'm lucky I may get an hour's sleep tonight. Have to be back in for a full day at hospital by 11am so no chance of rest in the day.

And then like this every night for the rest of the week.

Trazzletoes Tue 12-Nov-13 03:17:00

No. Not going home. His blood pressure is too low.

Any guess as to WHY that is? Well,because he didn't get his blood transfusion today <screams>

It was yesterday , wasn't it.

Trazzletoes Tue 12-Nov-13 03:17:40

I am past caring a flying fuck what they do with us.

I just need some fucking sleep.

Turnipsandpumpkins Tue 12-Nov-13 03:37:59

Hope you are getting some sleep Trazzles. I haven't posted before as I didn't think anything I could say would help, but you are all often in my thoughts.

Trazzletoes Tue 12-Nov-13 03:42:00

Nope. Sadly still awake. No sign of any kind if bed.

madwomanintheatt1c Tue 12-Nov-13 03:53:17

So nearly there. Can you go for a wee walk if he's sleeping?

Such a long journey for you all, it's no wonder you are exhausted xx

Turnipsandpumpkins Tue 12-Nov-13 03:55:30

Sorry Trazzle, that is beyond poor. A stupid question, but why can't they find you a bed? Still hope you are managing to snatch some sleep

Icepickinyourheadofthepops Tue 12-Nov-13 03:56:04

Thinking of you both. Can you get a milky drink? So sorry you're having such an awful time tonight.

Trazzletoes Tue 12-Nov-13 03:58:51

We've been in the treatment room this while time. There's no space for a parent bed. Joe is sleeping on a trolley.

They are sorting his bed on the ward now. I'll have a bed then but can't be fucked to go to the car to get my clothes.

claraschu Tue 12-Nov-13 04:21:15

You poor thing. I am so desperately sorry, and wish that there was any way to offer help or comfort to you. I don't know your whole story, as I have only read a small part of this thread, but I would give so much to be able to help. I wish at least I were a writer, so I could give some power to my words. I hope you are asleep at last, getting a moment of respite.

Oh trazzle. I know youre his mum but is there anyone who coxuld do a shift with j, allow you to get 6 hours inbroken sleep? You must be exhausted

Allthebees Tue 12-Nov-13 06:58:51

Just this final stretch, you're nearly there. You must be exhausted from the past year not just last night. Hope you both got some sleep in the end and that the coming days are as kind as poss.

Chathampocket Tue 12-Nov-13 07:06:18

Sorry it's so so hard - hope you've managed to get some rest and that today is better

saffronwblue Tue 12-Nov-13 07:12:13

Thinking of you Trazzle. It is just so damn hard and unfair. Keep putting one foot in front of the other and know that there are many of us virtually holding your hand. Wish I could do something more practical. x

minmooch Tue 12-Nov-13 07:38:56

Aaaaarrrrgggghhhhhh Trazzles a horrible, horrible night for you and Joe. I think when the end of treatment is in sight then it actually gets harder to deal with any delays/anything that may elongate the whole process. You are exhausted and everything is shit. But you are also amazing and you are doing everything you can to help your son through this. Much love and hugs to you xxxxx

DawnOfTheDee Tue 12-Nov-13 08:06:45

Still following your threads and lurking. Sorry you've had a shit night...hope you get some rest soon. Thinking of you, Joe and the rest of your family xxx

Sounds like an awful night. sad Praying for you both.

LatinForTelly Tue 12-Nov-13 11:05:31

Hold on, Trazzle, hold on xx

Trazzletoes Tue 12-Nov-13 11:28:12

Feeling much better now I've consumed my body weight in caffeine and chocolate and it's daylight.

Need to keep reminding myself it's the last week of this ridiculous malarkey.

Icepickinyourheadofthepops Tue 12-Nov-13 13:26:37

Apologies for a trite suggestion of milky drink. Was awake and having been lurking wanted to post in a supportive way. Best wishes and much admiration.

barefootcook Tue 12-Nov-13 20:26:57

Hi Trazzle- hope you both finally got a bed and some sleep. You WILL make it. Don't buckle at this late stage. Am thinking of you all.

ChippingInLovesAutumn Tue 12-Nov-13 21:14:13

Hi my lovely - how was the rest of your day? Not long now kiddo, not long now x

Trazzletoes Tue 12-Nov-13 21:39:26

Hey. Joe ended up being kept in for observation last night and we finally settled down at 4am. The upshot to this was that he got his blood transfusion earlier than expected - at 9am so that was good. And it meant he could have his injection as early as possible too. They can bring it forward by 2 hours on the previous day. The earlier the better as if we have to go in, it's better at 7pm than midnight!

He's already had a temperature tonight but because he's already had all the investigations done in the last 48 hours then we don't have to go to hospital unless he becomes unwell. So it's a bit of a tense few hours! Tomorrow night though, we will have to go in again. Boo!

Trazzletoes Tue 12-Nov-13 21:40:36

Btw a milky drink was in no way a trite suggestion! If have killed for one but no access to hot chocolate and I couldn't leave Joe as one side of the trolley was down and he was hanging off the edge! He likes to be by the edges and corners of things.

ChippingInLovesAutumn Tue 12-Nov-13 22:03:47

Great that he got seen to earlier smile I hope you can all get a good nights sleep at home tonight! Bugger that you have to go in tomorrow night as well - but really, there is light at the end of the tunnel now isn't there?

The need some Hospital Mums don't they - people doing nice things for people, like getting them a hot chocolate smile

FixItUpChappie Wed 13-Nov-13 04:17:20

Hey Trazzle - thinking about you and Joe. Hope your okay.

Sending well wishes into the universe

Onwards, onwards, onwards smile Hang in there Trazzles.

ToffeeWhirl Fri 15-Nov-13 05:58:47

I lost this thread but gave blood this week and have been thinking of you and Joe. So sorry to see that you had such an awful night on Tuesday. I hope things are a bit calmer now.

Delighted to see that Joe is able to get to nursery for a bit now. It must mean so much to see him doing normal things.

Turnipsandpumpkins Fri 15-Nov-13 06:08:30

Happy and hopefully vibes from all the Turnips too

Badvoc Fri 15-Nov-13 17:52:29

Still here and still thinking of you and dear joe x

Trazzletoes Sun 17-Nov-13 21:45:30

He's had a good week last week, less sick than last time and coped reasonably well. Had a call yesterday from one of the Doctors to say one of his blood tests had grown a nasty bug and how was he doing? He was absolutely fine so it looks like it isn't him that is infected but that it got picked up off his skin or something - common and that less there. Phew! If it gets in to his line then it would make him extremely unwell and delay his treatment a few weeks and could lead to surgery to remove his line etc.

We are due in tomorrow to start hopefully the last week in hospital. I called the ward this afternoon and so far as planned there's no bed available for him - lots of poorly children at the moment. I really hope they can find a way to squeeze him in. We're so close to the end of this bit now. I just want it over.

I've got yet another cold as well. Can't wait to start getting some sleep again sometime!

Ragusa Sun 17-Nov-13 22:27:55

So close to the end of this load of treatment. Keep on pushing through Trazzles.

Really pleased to hear Joe's doing well and not been as sick as previously. That's great. Will you be able to get out and do some gentle stuff again with him once this immunotherapy is over and once you've all had some proper sleep??

Look how far you've come. What a road, but you've come a long way along it flowers

onedev Sun 17-Nov-13 23:02:30

Glad he's doing well. You've all come so far with this & nearly there now. Good luck for this week. Splodging & gingers crossed as always b

ToffeeWhirl Sun 17-Nov-13 23:50:43

I'm so glad to hear Joe has had a good week and really hope he gets a hospital bed tomorrow. I'm not surprised you just want this bit all over and done with.

Trazzletoes Mon 18-Nov-13 20:46:05

Pleased to report that a bed was found and Joe is well on his way through the first course of antibodies this week. He has coped much much better with the pain this week - he hasn't needed it to be increased from 30 whereas usually it has to go up to 40 and even then he's still struggling.

At least the first few hours have gone well...

nemno Mon 18-Nov-13 21:04:49

Gosh I've got everything crossed for you; for this week and beyond. I am so in awe at how you have coped/got through/stayed sane this last year. I wish your dearest little boy a joyous return to proper childhood very soon xx

ancientbuchanan Mon 18-Nov-13 21:11:44

Excellent, gingers crossed and ginger in my gin ( great combo with angostura) so lots of gingers around for you. Praying and thinking candles in my mind. V close to the finishing line and he will be the best winner ever.

ToffeeWhirl Mon 18-Nov-13 22:30:35

Great news! I hope the next few hours in hospital pass quickly and uneventfully.

onedev Mon 18-Nov-13 22:38:12

Nemno said it perfectly thanks

saffronwblue Tue 19-Nov-13 06:41:37

Yes indeed. Thinking of you and little Joe and hoping everything stays smooth and on the up and up.

bobkate Tue 19-Nov-13 11:07:57

So pleased a bed was found for him. Here's hoping it's as smooth a week as it possibly can be xx

Canthaveitall Tue 19-Nov-13 22:07:06

Long time lurker. I just wanted you to know I am thinking of you and Joe.

Trazzletoes Wed 20-Nov-13 22:07:38

Joe's fluid retention hasn't been so bad this week... Well, it was but he was dehydrated because all the water was where it shouldn't be.

So he's had a catheter fitted today ( poor little mite) and got rid of 2 litres of fluid. 2 LITRES!!!

OMG. That's a lot of liquid. Bless him.

You're so close to the finish now. I'd love to sweep you up and carry you all over the line.

Come on Super Joe and your amazing family. <waves pom poms>

Trazzle and Joe - just to let you know you are in my thoughts often x.

ancientbuchanan Wed 20-Nov-13 23:21:52

2 litres.. he must have been so uncomfy. I hope he is happier now.

Splodging for the home straight.

kohl Wed 20-Nov-13 23:35:17

You and Joe are in my thoughts and prayers often. You are incredible, and every ginger crossed for a sprint over the line.X

Trazzletoes Thu 21-Nov-13 04:49:31

He's just been sick and it was really really green. Which suggests his gut has stopped working. Or is stopping working.

I could cry. I can't deal with this again. Not now we are so close to the end.

I just can't.

madwomanintheatt1c Thu 21-Nov-13 04:55:12

Big deep breath and refuse to think about it, trazzles.

Only a couple of hours until morning and everything will look better.

Hang in there xxxxxxxx

Trazzletoes Thu 21-Nov-13 06:13:57

I can't refuse to think about it. He keeps vomiting dark green. It's unavoidable to think about it.

I am so fucking fucked off with all this now.

Turnipsandpumpkins Thu 21-Nov-13 06:22:30

Oh Trazzles.
That is unspeakably shit.
Thinking of you both, wishing we could help. (I'm crap at writing supportive words - sorry)

tunnocksteacake Thu 21-Nov-13 06:22:45

Message withdrawn at poster's request.

Thinking of you & hoping it means something non dramatic..
Good luck keep those gingers crossed

mynameisnotmichaelcaine Thu 21-Nov-13 06:39:48

How rubbish. Thinking of you.

sybilfaulty Thu 21-Nov-13 06:42:48

Thinking of you Trazzles. Hope today brings reassurance. Hugs

I've just caught up with your thread and have had you in the back of my mind for months.

I have been just where you are with my DH and I'm crying with the memories of the way you feel - worried and awake in a hospital in the middle of the night over and over again; the smells, the noises. It was the same. Never ending. And awful.

You are doing more than is humanly possible for your lovely Joe - as much as you can and more besides - and even though each new problem, each new admission feels overwhelming, you are doing the most amazing job.

Keep going. You are incredible.

<squeeze>

RubyrooUK Thu 21-Nov-13 07:28:15

Big hug. Don't often post but thinking of you. Hope things improve today. X

TheCountessOlenska Thu 21-Nov-13 07:38:08

never know what to say Trazzles so don't post often but think of you and Joe every day.
Can i just double check - do i definitely need to wait till the baby is 12 months before i can give blood?

saffronwblue Thu 21-Nov-13 07:58:29

Splodging and thinking of you.

saffronwblue Thu 21-Nov-13 08:07:11

Splodging and thinking of you.

upto11 Thu 21-Nov-13 08:37:25

I haven't posted for a while, but I think of you and Joe often. All gingers crossed for a better day today. Splodging from Devon.

ToffeeWhirl Thu 21-Nov-13 11:29:39

So sorry, Trazzles. Just hang on there. This will pass, just as all the other unspeakable shit has passed. Big ((hugs)) to you for always being there for Joe when he needs you.

Thumbwitch Thu 21-Nov-13 11:47:15

Hi Trazzles, also just caught up on what's been going on.

So sorry to hear that Joe is having more digestive problems again sad

Hang in there - I realise you have pretty much no choice but to do so, but remember that you have a huge amount of support from around the world.

Splodge of light and crossed gingers from Australia for you and Joe - hope it's resolved very quickly and he gets through this last round successfully xx

greenhill Thu 21-Nov-13 12:11:04

Hang on in there. I hope things pick up for you and Joe very, very soon.

I haven't posted for a while, but am still thinking about you all.
xx

nemno Thu 21-Nov-13 14:36:07

Sorry to hear your latest. Thinking of you x

X

JetcatisBack Thu 21-Nov-13 14:49:36

I don't think I have ever posted Trazzles (maybe once) but I always read for updates, and every day you are all in my thoughts - sending you all lots of strength and best wishes xx

pepperrabbit Thu 21-Nov-13 18:24:39

Oh Trazzles, thinking of you and Joe. I hope they can sort it out.
Hugs. x

tholeon Thu 21-Nov-13 20:25:40

I am so sorry, this disease is tortureing you. I hope and pray things improve xx

DawnOfTheDee Thu 21-Nov-13 20:30:59

Thinking of you and Joe and have everything humanly possible crossed that things improve x

Almostfifty Thu 21-Nov-13 20:43:17

Oh you poor, poor things. I hope it's settled down now.

I keep checking for updates but rarely post too, but I have been keeping an eye on things.

onedev Thu 21-Nov-13 21:50:17

Oh that is shit, especially when you're so close to the end. Hang in there. Sending lots of love - splodges & gingers crossed. xx

I v much hope things have settled by now.
Wishing you and Joe a peaceful and restorative night x.

Sillybillybob Thu 21-Nov-13 22:21:03

Message withdrawn at poster's request.

howmuchworse Fri 22-Nov-13 07:11:20

Another occasional poster but frequent lurker, am often thinking of you, J and your wider family. Good strong thoughts winging their way to you. One day/hour/minute at a time like before, you can do it.

How are things now trazzles?

Thinking of you Trazzles x

bobkate Fri 22-Nov-13 19:26:06

Aw shit Trazzles, sounds awful. Gutted for poor old Joe, and you. Must be terrifying to be on your rollercoaster sad. Huge love to you all, such a bloody ordeal you're living through xxx still sending Essex splodges all the time xx

ancientbuchanan Fri 22-Nov-13 21:58:58

Splodges from south London. Hoping the weekend us good.

LongStripedScarfWearer Fri 22-Nov-13 22:01:04

((((*Trazzles*))). Thinking of you x

Trazzletoes Fri 22-Nov-13 22:18:41

Thanks all. His tummy is hanging on for the time being.

Tonight could be his last night in hospital! Except it won't be because he's had constant temperatures all week so we are bound to be back as soon as he is discharged but there you go...

He is just having his last round of antibodies flushed and then his last nasty injection. Hurrah! This part of the treatment is just so nasty I cannot wait for it to be done.

He has been so amazing this week. I am so proud of how he copes with all this.

Funnily enough his nurse tonight was his very first nurse in oncology and is also his favourite so I'm pleased about that.

I can't remember whether I mentioned that they found a nasty bug in his blood last week but suspect the blood sample was contaminated. They are retesting for it now. Usually if his scans come back clear he would keep his Hickman line in his chest for a few more months but if he has this bug it will hide in his line and make him extremely poorly so they will just take his line out to prevent that. We shall see.

He is a little superstar anyway, as always.

bobkate Fri 22-Nov-13 22:24:10

A little superstar with a superstar mummy smile Good on Joe's tummy xxx

Love and strength to you all x.
So glad he is (a bit) better - and that you sound still-standing as well.

I have a Joe too (3.7) which makes your Joe's story just that little bit closer for me iyswim.

Hope you do get home v soon.

ancientbuchanan Fri 22-Nov-13 22:43:37

He is an absolute super star. And so are you.

Canthaveitall Fri 22-Nov-13 23:27:32

Sounds like good news. I wish you both a restful night.

barefootcook Fri 22-Nov-13 23:29:03

What a week Trazzle. Can't believe you are almost there! I really hope the last bit goes smoothly. Thinking of you guys, as always.

onedev Fri 22-Nov-13 23:44:15

Superstar indeed. Go Joe!

ajandjjmum Sat 23-Nov-13 15:01:43

Hope you all have a great weekend Trazzles.

Trazzletoes Sun 24-Nov-13 22:42:01

Hey, just a quick update that Joe finished his treatment early Saturday morning and was discharged at tea time yesterday. He's doing ok - it takes him a few days to brighten up after the antibodies so he's not quite himself but he has enjoyed being in his own bed and watching a couple of films.

Tomorrow we start the last fortnight of tablets! That's all that now stands between him and relapse so hopefully it's already worked well.

He's very glad not to be having more injections in his legs though. He hates them and they've been in his treatment at the start (when I had to do them) and at the end. And they are painful.

Because he still has a line in his chest he is at risk of serious infections ( the children get extremely sick extremely fast - ambulances and the like) so we still go in if he gets a temperature. Another member of the household has developed a fever tonight so has strict instructions to stay well away!

Fortunately for us the Consultant who is on this weekend is fairly chilled out about things. That, and the fact that they are hugely short on beds, meant that we were allowed to give Joe paracetamol at home for 24 hours after discharge, which is great, provided we took him in if he was actually unwell. It just saved a lot of temperatures and a lot of phone calls to them and trips in.

ajandjjmum Sun 24-Nov-13 22:56:01

Fingers crossed that Joe continues to cope, and will soon be feeling brighter. So glad you're seeing that light at the end of the tunnel - even though keeping everything crossed still! smile

You're an amazing Mum Trazzles.

ToffeeWhirl Sun 24-Nov-13 23:08:55

Fantastic news, Trazzles. So glad you and Joe are home now.

You're an amazing Mum Trazzles.

^^
And this.

onedev Sun 24-Nov-13 23:34:00

Well done guys - so close to the finish line now. Your strength & determination are an inspiration. Gingers crossed temp stays down & you get to stay at home. Splodges.

Hoping everything goes very smoothly for you now. Praying for Joe and for you all. smile

Zhx3 Sun 24-Nov-13 23:59:38

I am crossing all of my fingers and toes for you and Joe, Trazzle x

Turnipsandpumpkins Mon 25-Nov-13 00:43:38

Great news that Joe is home, will be thinking of you over the next few days x

ancientbuchanan Mon 25-Nov-13 09:07:00

V glad you are at home and hoping for no fever nor infection.

Splodging like mad.

pepperrabbit Mon 25-Nov-13 12:43:33

Glad to hear you are home now Trazzles smile

bobkate Mon 25-Nov-13 17:42:54

What a relief you're home, really hoping these next two weeks go as quickly as they can. I bet it'll feel like a lifetime to you. Hope you don't mind me asking but at the end of the fortnight, what happens then? Will he have to have more tests to see if the treatment has been successful or is that something you just have to wait and see what happens?
Another wishing for no infections or fever for super Joe xx

DawnOfTheDee Mon 25-Nov-13 19:37:07

So glad to hear you're home - fx it stays that way x

RubyrooUK Mon 25-Nov-13 19:37:18

So glad you are home x

Almostfifty Tue 26-Nov-13 22:26:51

What lovely news.

I am so pleased for you all.

Trazzletoes Thu 28-Nov-13 20:24:29

So Joe has posted an actual proper real fever tonight so I'm back with him in hospital waiting for confirmation he has a chest infection.

It's my own fault for getting excited about the ward charity Christmas party at the weekend with Santa and presents... He missed last years' because he was in hospital with an infection. Oh wait...

RubyrooUK Thu 28-Nov-13 20:27:54

Oh bugger. Will send you all my most infection-fighting vibes and hope that fever cools down quickly....

kohl Thu 28-Nov-13 20:34:36

Have everything crossed that it clears up asap. Have been and will continue to pray for you guys.X

onedev Thu 28-Nov-13 21:17:11

Crap! Sending lots of good wishes.

Me too. Hoping it clears soon x

greenhill Thu 28-Nov-13 22:02:26

Hope it clears soon. You are in my thoughts x

Trazzletoes Thu 28-Nov-13 23:11:27

He's had an x ray and doesn't have a chest infection but is dehydrated a bit so is staying in on fluid. They'll put him on antibiotics just in case and get the oncology drs to make a decision tomorrow.

ancientbuchanan Fri 29-Nov-13 07:37:00

Thinking of you for today.

saffronwblue Fri 29-Nov-13 07:40:14

It is such a damn rollercoaster. Thinking of you.x

ajandjjmum Fri 29-Nov-13 18:40:02

Hope Joe's feeling better today.

Hassled Fri 29-Nov-13 18:48:28

Oh blimey - was thinking of you and just caught up on the last couple weeks (I lurk, crap at ever knowing what to say). Just hoping he gets to see Santa. How you've stayed so sane and strong and lovely is beyond me.

I don't think I've posted since the first thread, as I'm another who doesn't know what to say, and by the time I think of something passable others have posted, so i go back to lurking.

I'm just popping up to say you're both superstars. I daren't even imagine what you're going through/gone through but I'm crossing everything Joe sees Santa this year!

Splodges from the north west

ClockWatchingLady Fri 29-Nov-13 20:45:09

Thinking of you and Joseph every day, Trazzles.

XX

bobkate Fri 29-Nov-13 21:58:21

Yep - same as clockwatching, thinking of you all x

onedev Sat 30-Nov-13 09:49:00

Another thinking of you. Hope today is a good day.

ChippingInLovesAutumn Sat 30-Nov-13 10:23:19

What a year sad Still, he doesn't have a chest infection, he has completed all of his treatment and hopefully you can go home this weekend & stay there!! Much love xxx

LatinForTelly Sat 30-Nov-13 22:15:41

Is it too much to hope that Joe got to the party, Trazzle? Thinking of you all, as ever.

Sillybillybob Sat 30-Nov-13 23:42:35

Message withdrawn at poster's request.

Fingers crossed that Joe gets home tomorrow.

(BTW do you need to check your name?)

Trazzletoes Sat 30-Nov-13 23:48:16

The party is tomorrow afternoon [grimace].

Today I've been on my annual Christmas shopping extravaganza with a friend so DH has been in the hospital. Today's Dr said that "because he had been so sick on admission" he needed 5 days I/v antibiotics.

The fact that he was "so ill" was news to us as, apart from having a temperature he was pretty chipper! And all his levels had been good etc. DH questioned it and fortunately Joe's nurse today was a Charge Nurse and had been there when we were admitted and could tell the Dr that he had been broadly fine. So the Dr has spoken to the Consultant, Joe's paracetamol has been stopped and if his temperature stays down he could be discharged tomorrow in time for the party. I am not holding my breath but quietly hopeful.

He's had a good day though. We took him in to the play room for a bit and he's been quite bright. He'll be discharged on oral antibiotics but he will be home. Hopefully.

onedev Sun 01-Dec-13 09:55:57

Gingers crossed he gets to go to the party! Thinking of you all as always. 1st December already - it's been a long hard road for you, but you are all doing so well. Keep plodding on, you're getting there & your strength is an inspiration. thanks

Oh, fingers crossed here too, Trazzletoes, I so hope he makes it to the party.
Did he have a chance to open the first door on an advent calendar today?

ajandjjmum Sun 01-Dec-13 15:58:42

Hope you're enjoying the party as I type! smile

How did today go?

ancientbuchanan Sun 01-Dec-13 21:14:55

Hoping so much today was good and he got to see Santa.

bobkate Sun 01-Dec-13 22:48:22

Really hoping he got to go to the party today x

Trazzletoes Mon 02-Dec-13 06:55:31

Hi! Sorry to be so slow updating - busy day!

The lovely lovely Doctor on the ward bumped Joe to the top of the ward round so he could be discharged on time if at all possible. Party wAs at 1pm, and we arrived a few minutes after.

Massively grateful to all the staff on the ward who did everything in their power to get him there.

We all had a wonderful time - Joe tired quite quickly so we left well before the end, but he loved meeting Santa so much and they got great presents - he is now absolutely convinced of Santa's magic because the presents he and DD were given were so perfectly chosen.

I said to DM that it was sad that so many children are having treatment. She pointed out to me that every child in that room was happy fsmile

And of course too many faces were missing.

The Doctors think Joe had a virus so have sent him home without antibiotics - hoping they are right as we have exciting plans for next week and I really hope he doesn't get poorly again!!!

Trazzletoes Mon 02-Dec-13 06:56:57

Oh yes, and if you are on Facebook and like pictures of children having fun, the Candlelighters page has a link to the photos from the party.

saffronwblue Mon 02-Dec-13 07:29:41

yay for Joe and Father Christmas! So, so happy to read this. x

smile How lovely!

pepperrabbit Mon 02-Dec-13 12:18:50

I'm so pleased you got to the party smile
Fingers crossed for a healthier week.

ClockWatchingLady Mon 02-Dec-13 12:42:03

Hurray for Joe, you, the Christmas party and so many happy children fsmile

Ragusa Mon 02-Dec-13 14:25:08

Woo Hoo!

bobkate Mon 02-Dec-13 14:41:59

So pleased he got to the party....and wow, no wonder he didn't want to miss it. Looked like a wonderful time if I've found the right photos. And there were lots and lots of smiling children in them. What a wonderful organisation. Here's hoping Joe gets to take part in those exciting plans of yours! x

ancientbuchanan Mon 02-Dec-13 19:39:18

Eyes a little damp here. So glad he got there. Hurrah for Santa and Joe.

barefootcook Mon 02-Dec-13 20:10:02

Wonderful news Trazzle. Hope Joe keeps enjoying the festivities.

onedev Mon 02-Dec-13 21:42:40

So pleased he got to go. smile

CrazyThursday Tue 03-Dec-13 21:37:10

Wow that looked like a fab party - and the kids looked delighted and happy and smiley. I'm so glad that joe was wel enough to go too. I hope that's set the scene for a happy healthy Christmas for you all.

kohl Thu 05-Dec-13 11:08:26

Just thinking of you all in the run up to Christmas, and hope it's a peaceful and happy time for you.

Trazzletoes Sun 08-Dec-13 08:06:04

It's the last day of treatment today. Fingers tightly crossed it's the last day of treatment ever... I just desperately hope it has worked.

Scans start tomorrow and are spread over the next fortnight. Am terrified.

We feel so incredibly lucky that he has even got this far. So many children don't. And Joe oughtn't.

I've started dreaming about his funeral again though and we had a moment the other day - we were listening to some music and a song came on and suddenly DH and I were crying. I guess we could both imagine it being played at his funeral. I am just so scared now. I feel like I'm walking along a cliff that could give way at any second. I just want the cancer out of him.

RubyrooUK Sun 08-Dec-13 08:17:06

Trazzles, I will be wishing with every particle of my being that Joe's last day of treatment goes well for you and that horrible thoughts like his funeral stay only a bad dream. X

Trazzle [hugs]

I am wishing you the results you are hoping for with all my heart.
Isn't the subconscious a strange thing?! I hope you live to never see Joe's funeral.

ancientbuchanan Sun 08-Dec-13 08:39:01

Trazzle,

Thinking of you, praying for you, off to light a candle for you.

FeastOfPhteven Sun 08-Dec-13 08:40:29

Keeping every finger and toe crossed that this is the last treatment. Such a brave amazing boy.

CelticPromise Sun 08-Dec-13 08:41:37

I will say a prayer for positive scans and a joyful Christmas for the Trazzle family. Your little boy is amazing.

Trazzles...as ever I don't know what to say in the face of what joe and you and your family have been and are still going through.
But I think of you all so often, and pray for you.
Thinking of you all over the next 2 weeks xxxx

SarahJinx Sun 08-Dec-13 08:58:57

Ah Trazzles, praying hard for you and e beautiful, brave Joe.

ToffeeWhirl Sun 08-Dec-13 09:13:27

I wish you strength, Trazzles. It's unbelievable what you have to go through. I just hope you have good news by Christmas. xx

MelanieRavenswood Sun 08-Dec-13 10:33:20

Hoping, wishing, crossing everything. Xx

saffronwblue Sun 08-Dec-13 10:36:23

Everything crossed and light splodging for Joe.

onedev Sun 08-Dec-13 11:32:02

As the others have said - everything crossed & wishing you the best of luck & that it truly is the most magical Christmas ever.

ajandjjmum Sun 08-Dec-13 13:41:55

Joining in the prayers for Joe and all of you. x

Fivemoreminutesmummy Sun 08-Dec-13 15:19:38

Not posted for a long time but still thinking of you and joe and hoping so much that you get good news.

NomDeClavier Sun 08-Dec-13 15:25:06

Still thinking of you and splodging away here too. Fingers crossed that the scans go well and you get positive results.

barefootcook Sun 08-Dec-13 19:30:43

Am thinking and praying for you both at the moment. I hope the last day of treatment goes well and your two weeks of tests bring perfect results.xxx

Ragusa Sun 08-Dec-13 19:56:47

Was thinking of you and Joe while putting up Christmas tree this afternoon.

Everything crossed for good results and a properish Christmas for you this year. xxx

ClockWatchingLady Sun 08-Dec-13 20:09:06

Another member of the MN Trazzleteam here, thinking of you all (every day, but today especially) with everything crossable crossed.
X

kohl Sun 08-Dec-13 20:36:08

Everything crossed, you remain in my prayers, especially in the next fortnight.X

cupcakeicing Sun 08-Dec-13 20:47:25

Been following thread too, Trazzle. All the best wishes in the world to you for the next couple of weeks.

toffeelolly Sun 08-Dec-13 21:18:40

Trazzle will be thinking of your little man over the next couple of weeks. We are all praying.xx

bobkate Sun 08-Dec-13 22:18:07

Everything will be crossed and doubley crossed for you and the gorgeous Joe. I hope today's last treatment went ok and my goodness I am wishing and hoping for good scan results and mustering as many positive thoughts as possible for you all. Splodging and splodging and splodging huge, fat, enormous splodges xx

minmooch Mon 09-Dec-13 08:16:04

Sending you tons and tons of love. I cried buckets at the end of my DS's original planned treatment - through relief, fear, the unknown, happiness.

I hope, hope, hope that you get good news from these scans xxxxxxxxx

pepperrabbit Mon 09-Dec-13 09:56:40

Trazzle, I have everything crossed that the scans bring good news. x

upto11 Mon 09-Dec-13 13:22:18

Everything crossed here for good news from the scans. X

Thinking, praying, crossing and splodging.

So so hard xx

tholeon Tue 10-Dec-13 14:51:36

Praying too xx

nemno Tue 10-Dec-13 16:06:17

Willing for you to receive good news and for you to be able to relax a little. So much goodwill out here for all your family xx

ToffeeOwnsTheSausage Tue 10-Dec-13 20:54:58

Trazzles - I hope the last treatment went well and the scans bring good news.

PacifistDingDong Tue 10-Dec-13 21:53:11

I was thinking of you and Joe yesterday.
Everything crossed for him here thanks

Incapinka Wed 11-Dec-13 16:04:08

Am thinking of you all now and the next couple of weeks. And can't imagine how stressful and worried and frightened you are all feeling. I hope you get the news we are all hoping to hear too. Come on Joe. You are a little superstar who is loved by so many of us even though you will never meet us. Hugs, splodges and gingers crossed xxx

ninja Wed 11-Dec-13 18:52:29

Positive thoughts from me too - joe has been so strong to get to this stage and will continue to be so x

RubyrooUK Wed 11-Dec-13 20:25:27

Also thinking of you and Joe x

ToffeeWhirl Thu 12-Dec-13 00:04:16

Another one here hoping for good news for Joe and you very soon. x

ClockWatchingLady Fri 13-Dec-13 21:32:54

Hope this week has gone well, Trazzles. X

ilovesmurfs Fri 13-Dec-13 21:45:53

Sending love and strength hoping for great scan results.

I was 5madthings amd am long time lureker, occasional poster on joes threads xxx

fizzly Fri 13-Dec-13 22:57:43

and me. (friend of a friend of yours, have NCd but we have PMd before).

xx

barefootcook Fri 13-Dec-13 22:59:59

And again from me Trazzle. I will light a candle at the nativity tomorrow.

Ragusa Fri 13-Dec-13 23:00:42

And from me. Been thinking of you this week.

ChippingInLovesChristmasLights Sat 14-Dec-13 15:41:21

How have you all been this week??
x

Checking in to say our Joe candle still burns bright. Hoping for strength for you and DH and good news for SuperJoe

ancientbuchanan Sat 14-Dec-13 22:59:24

All of the above from me, too.

Trazzletoes Sun 15-Dec-13 09:19:56

Hi there, he's had a good week - Monday was hearing test, kidney function test and heart echo. His hearing is affected at the very top level - he misses very high frequency sounds but it seems to be no worse than it was in February. We know 1 kidney will go over the next 2 years as well, it's just a case of exactly when.

Then Friday was an MRI of his head, chest and abdomen. Next week he has something called an MIBG where radioactive stuff is injected in to him and it sticks to neuroblastoma and then lights up on the scan. It only sticks to neuroblastoma but there's a small proportion of neuroblastoma tumours that don't suck it up so they have to do the MRI as well.

His recovery this time off treatment is slower but you can see he feels much better than he has in ages. He is smiling SO MUCH! His stomach is tolerating a feed that is harder to digest which means he doesn't need to be connected to it so much during the day. He's walking a tiny bit. He's trying tiny bits of food.

Thank you so much for all your support x

Trazzletoes Sun 15-Dec-13 09:29:19

Ooh I forgot - he's also now stopped his medicines for pain relief and anti-sickness. Feels like there is some progress!

ABitterPIL Sun 15-Dec-13 09:41:22

Here is hoping for the all clear so you can all reallt celebrate christmas xxx

saffronwblue Sun 15-Dec-13 10:30:07

So pleased for the good week and what sounds like so far so good results.

PacifistDingDong Sun 15-Dec-13 10:54:50

Trazzle, what good news and progress for Joe and you all smile.

Wishing you a very peaceful and happy run-up to Christmas x.

ToffeeOwnsTheSausage Sun 15-Dec-13 11:30:57

That all sounds very positive.

I don't know if this helps but my son was born deaf and can now hear so things can change in that department.

LatinForTelly Sun 15-Dec-13 15:16:05

Glad Joe's feeling so much better and his tummy is improving. I'll keep everything crossed for his MRI results and other scan next week.

Hoping so very much that you can all have a happy and peaceful Christmas x

ancientbuchanan Sun 15-Dec-13 16:11:15

Oh, Trazzle, little steps but ones with smiles, lovely boy.

As above, hoping a lovely run up to Christmas and a happy Christmas itself.

onedev Sun 15-Dec-13 16:16:07

All sounds like good progress. Keeping my gingers tightly crossed.

tholeon Sun 15-Dec-13 18:54:55

Bless him lovely smiling boy, I will pray for continued good news xx

Ragusa Sun 15-Dec-13 21:12:11

Fabulous nuggets of good news. Hope this week carries on in the same way.

I am so very pleased Trazzle

FeastOfPhteven Sun 15-Dec-13 21:54:18

Pleased to read he is progressing.

Good luck for the forthcoming tests x

ajandjjmum Sun 15-Dec-13 22:17:45

Hope the Trazzles family are beginning to dare to look forward to Christmas. xx

Incapinka Sun 15-Dec-13 22:25:08

Am keeping everything crossed for you x

ToffeeWhirl Sun 15-Dec-13 23:39:11

This is great news. I'm so pleased for you all. x

Trazzletoes Mon 16-Dec-13 10:39:31

Stopping the anti-sickness meds appears to have been a mistake grin

Pyjamas day it is then!

JanePurdy Mon 16-Dec-13 10:53:36

thinking of you often Trazzles family.

ChippingInLovesChristmasLights Mon 16-Dec-13 10:58:02

That's good news about Joe's hearing - well, obviously not that it has been affected at the high frequency levels, but that it hasn't got any worse and that overall he hasn't lost too much of his hearing.

It is a shame that he will definitely lose one kidney - but as you said from the begining - if that's the price he has to pay, even that isn't too bad. How is the other one?

When will you get the result of the MRI? Will you get that before he has the MIBG (which sounds horrible sad ) or will you get both lots of results together - and how long will you have to wait? Fingers crossed for no sticking and lighting up!!

He is doing so so well - happy tears this time x

Sorry to hear coming off the anti sickness meds wasn't such a great idea envy << that is not envy!

How are DD, DH & Mum?

... how are YOU?
x

IsabellaMilborne Mon 16-Dec-13 11:07:32

Here's hoping that you can all have a good Xmas together; so glad to hear he's more perky smile and good luck with the tests this week.

ClockWatchingLady Mon 16-Dec-13 13:19:27

The smiles sound awesome, Trazzles.

Hope the sick clean-up is done, and nice clean PJs were available.

Also keeping everything crossed for lots more fgrins this week, for Joseph and for you all.

Slimchance Tue 17-Dec-13 15:57:32

Haven't been on here for a while but have been thinking about you all Trazzles and sending usual prayers and positive vibes across the channel. Congratulations to you and Joe and all the family on getting through the treatment: it must have taken huge reserves of stamina, commitment and downright grit on all of your parts.

Sorry to hear anti-sickness meds still required but hopefully not for much longer and good luck with MIBG/MRI results xxx

bobkate Tue 17-Dec-13 22:36:10

Really hoping all this week's tests go well. Thinking of you and willing for good news x

RubyrooUK Wed 18-Dec-13 08:37:19

So pleased there is good news. Will be hoping you have an amazing Christmas as nobody could deserve it more than the Trazzles family. X

Candustpleasefuckoff Wed 18-Dec-13 08:41:14

V pleased that he is feeling a little better. I have everything crossed for the scan results. Come on little man! He has the whole of mumsnet behind him. X x x

upto11 Wed 18-Dec-13 11:25:12

Lovely to read your Sunday update, and hear positive news. Hope the tests this week go well. And just everything, everything crossed for the news we all want to hear next week. X

onedev Wed 18-Dec-13 18:13:40

Still splodging & wishing you all the best.

kohl Wed 18-Dec-13 21:06:36

Hoping and wishing so hard for good news for you this week. I can't imagine what you're feeling. The Trazzles family are epic.X

Trazzletoes Sat 21-Dec-13 06:51:40

Hiiiiiiiii, Joe's consultant called last night. They can't find any evidence of cancer on the scans! He's finally in remission!

Cautiously optimistic as we know this can change in a heartbeat - one family we know discovered their DS was terminally I'll less than a fortnight after they were told he was in remission...

But for now DS is healthy. I can look at him and see my son, not my son with cancer.

Thank you for being here and holding my hand through this, as always xxxxx

Merry Christmas fgrin

wine cake wine cake

fgrin
Merry Christmas trazzles
fgrin

Candustpleasefuckoff Sat 21-Dec-13 06:54:57

Merry Christmas trazzletoes. I have tears in my eyes, such amazing news. Bless joe's heart. Have a wonderful Christmas. X x

earlymidlifecrisis Sat 21-Dec-13 06:55:45

What incredible fabulous news and just in time for Christmas! The best present for you all, ever. Wishing you all a wonderful, happy and healthy Christmas.

DirtyThree Sat 21-Dec-13 06:57:38

Trazzle that is soooooooooooo fantastic to read. I've followed you guys from the start and whilst I appreciate its not the end it's bloody marvellous news.

Big kisses to you all especially your amazing little dude.

Have an amazing Christmas. Will continue to splodge from the Essex riviera for you but my splodges have big fat grins on their faces now.

BelleOfTheBorstal Sat 21-Dec-13 06:57:38

Fabulous news. Hope you guys have an amazing christmas.

Sillybillybob Sat 21-Dec-13 07:00:35

Dirty please give my love to Essex fgrin.

My heart is so huge and full of love right now I have plenty to spare!

Trazzletoes Sat 21-Dec-13 07:01:15

Bollocks I'm crap at name changing!

Trumpton Sat 21-Dec-13 07:05:54

How wonderful. Happy Christmas to you all

Loonytoonie Sat 21-Dec-13 07:15:44

Tears reading your post.
What a Christmas gift to have.

beatofthedrum Sat 21-Dec-13 07:31:04

This is amazing news, so so happy for you! How wonderful after all you have been through. Wonderful wonderful news xx

Incapinka Sat 21-Dec-13 07:32:31

Whoop whoop!! How amazing!!!!! Clever, brave Joe fighting so hard and what an inspiration you have been through this journey Trazzles. Have a fan-bloody-tastic Christmas xxx

lazydog Sat 21-Dec-13 07:36:49

fgrin fgrin fgrin fgrin x1,000,000

That is the BEST news!!! Merry Christmas wine

Christmascandles Sat 21-Dec-13 07:39:40

Am delighted for all of you wine

Merry Christmas x

Alibabaandthe40nappies Sat 21-Dec-13 07:42:40

Trazzles what fabulous news. Merry Christmas to you all grin
Xx

tholeon Sat 21-Dec-13 07:53:55

Merry Christmas indeed. Lovely news, I opened this thread with trepidation, and am so happy now. Super boy xxx

SarahJinx Sat 21-Dec-13 08:01:26

The most wonderful news Trazzles, enjoy every second of your Christmas xxxx

Boxofbugs Sat 21-Dec-13 08:02:41

I have always lurked on your threads Trazzles but just had to post to say that is incredible news. Happy, happy Christmas.

SugarPlumpFairy3 Sat 21-Dec-13 08:21:23

Wonderful, just wonderful.

Have the loveliest Christmas with your dear boy fsmile.

windywoo26 Sat 21-Dec-13 08:29:18

Merry Christmas, your post Trazzle has made me cry! Fantastic news xx

Oh!
I have no words!
That never happens to me!
smile
Merry Christmas dearest trazzles and joe xxxxx

PacificDingbat Sat 21-Dec-13 08:44:06

Wishing you and all your family the happiest Christmas imaginable.
What a wonderful gift that news must have been.
May Joe's remission last forever fsmile

onedev Sat 21-Dec-13 08:52:53

I'm another crying tears of joy!! That really is the best news. Merry Christmas to you all!

MissBartlett Sat 21-Dec-13 08:56:00

Long term lurker here wishing you a very very merry Christmas!! That is the best present ever!

ExcuseTypos Sat 21-Dec-13 08:59:36

How fantasticfgrin fgrin fgrin

Have a magical Christmas fgrin

ToffeeWhirl Sat 21-Dec-13 09:00:26

fgrin fgrin fgrin

Best news ever! Have a truly happy Christmas!

meerschweinchen Sat 21-Dec-13 09:03:18

Amazing news. Best Christmas present ever. So thrilled for you, after all you've been through.

nothruroad Sat 21-Dec-13 09:04:43

I have tears in my eyes reading this and I don't even know you. Cannot imagine how you must all be feeling. What fabulous news and at such a lovely time of year. Have a great Christmas - hope you can manage to relax a bit and start to recover yourself.

Mouldypineapple Sat 21-Dec-13 09:15:10

Brilliant news. Hope he gets stronger every day and you can all enjoy Christmas together as a family. Joe is lucky to have such a strong mummy. Sending you hugs and chocolate!

thornrose Sat 21-Dec-13 09:27:11

What a Christmas present fgrin

Toomuch2young Sat 21-Dec-13 09:31:25

Happy Christmas Trazzle family!
Wonderful news, enjoy every moment x

Dinkydoos Sat 21-Dec-13 09:50:49

I have cried reading that update. Have followed your threads from the start. I am just so so pleased for you, you deserve this news.
And now you can concentrate on your best Christmas ever fgrin

ilovesmurfs Sat 21-Dec-13 09:54:59

Best Xmas present ever! Well doen Joe, you superstar!

Hope you all have a fabulous xmas and joes health continues to improve in the new year xxx

Ragusa Sat 21-Dec-13 10:02:13

oh.oh!! Also speechless. Also never happens to me.

Clever, wonderful Joe and family trazzles.

So pleased fgrin fgrin fgrin

saffronwblue Sat 21-Dec-13 11:23:36

Wonderful news! Fireworks of light over here for you!x

ToffeeOwnsTheSausage Sat 21-Dec-13 11:35:16

So pleased for you all

MERRY CHRISTMAS!!!!!!!!!!!!!

winecakebrewwinecakebrew.

ancientbuchanan Sat 21-Dec-13 12:41:41

Trazzle,
Unashamedly crying.

Well done Joe, well done you personally and both of you as parents and your family,well done the hospital and deo gratias, alhamd'alllah.

Have a wonderful Christmas and may 2014 bring you all nothing but good.

Your son, your daughter. Lovely.

ajandjjmum Sat 21-Dec-13 12:42:34

Fantastic Christmas present for all of us too! Have a brilliant time, all of you!

lougle Sat 21-Dec-13 12:54:56

How fantastically wonderful for all of you, Trazzles. My 6 year old niece has had a 'should have killed you' tumour and she, too, is miraculously in remission, to the amazement of the doctors.

Enjoy the moment, and long may it last cake

Jbck Sat 21-Dec-13 13:06:16

Best Christmas present ever!

Enjoy the holidays Trazzles, big hugs to all your family.

Greydog Sat 21-Dec-13 13:09:23

Wonderful news - have a fabulous Christmas x

RubyrooUK Sat 21-Dec-13 14:22:52

Amazing. So so happy for you. X

SoullessButSunny Sat 21-Dec-13 14:35:27

Wonderful news fsmile

Wishing you all a very happy Christmas xxx

Can't believe I've only just seen this now. This is utterly brilliant, I'm so happy for you.

BEST NEWS EVER ON MUMSNET flowers
grin grin grin

I am absolutely totally and utterly delighted, thank you for sharing this with us fgrin

So so happy for you grin

Have a very happy Christmas xxx

KindnessAndLove Sat 21-Dec-13 16:03:44

I have just read through the whole thread

Amazing news, I am so happy for you. Have a great Christmas!

SantasLittleMonkeyButler Sat 21-Dec-13 16:07:41

Fabulous news! Amazing fgrin.

Have a fantastic Christmas xxx

Myrrhtle Sat 21-Dec-13 16:28:06

Best Christmas present you could wish for! Have a wonderful celebration!

Slimchance Sat 21-Dec-13 16:42:23

Ohhhhhh, such fantastic news Trazzles - the absolute best!!

God bless and wishing you all a wonderful Christmas!!!

xxxx

NorthernLebkuchen Sat 21-Dec-13 16:57:46

Trazzles - so thrilled to read your update. I will keep on praying for Joe. I plan to be doing so for years and years. Prayers of thankfulness for his health and life. Wishing you a wonderful Christmas smile

ChippingInLovesChristmasLights Sat 21-Dec-13 17:03:51

Trazzles cake wine flowers wine cake

That send shivers down my spine - amazing, amazing news, just in time for Christmas fgrin Try to live in the moment, try not to think about 'what if', try to enjoy THIS moment - remission. Wow xxx

MelanieRavenswood Sat 21-Dec-13 17:16:15

Wonderful news. Merry Christmas, Trazzle family xx

WaitingForPeterWimsey Sat 21-Dec-13 17:27:23

So so pleased to read this - don't post much on mn but always thinking of you.

elliepac Sat 21-Dec-13 17:29:56

Yay, yay, yay, yay!!! I cannot express in words how happy this makes me. Much love to all the lovely trazzles family. I hope you have the best Christmas ever.

OLittleTownOfBarflehem Sat 21-Dec-13 17:34:58

Another oner who has been reading without posting, bloody marvellous news, well done Joseph, and Merry Christmas

upto11 Sat 21-Dec-13 17:49:29

As someone said up thread - best news ever. Seriously. Wishing you all the most wonderful, wonderful Christmas xxx

RifRaf Sat 21-Dec-13 20:21:07

Tears of happiness here too, amazing news. Enjoy your Christmas x

RunRunRuby Sat 21-Dec-13 20:22:22

Wonderful news, merry Christmas to you all! fgrin

Howstricks Sat 21-Dec-13 20:24:53

A very merry Christmas to all the Trazzle family and many more to come x

lalamumto3 Sat 21-Dec-13 20:26:57

I am so happy for you, wishing you a very happy Christmas

Lovethesea Sat 21-Dec-13 20:58:45

Woo hoo. Praying and hoping xxx

NomDeClavier Sat 21-Dec-13 20:59:46

Bloody wonderful news. So, so thrilled for you!

Enjoy your Christmas fgrin

Lovely, lovely news.

RosesOnTheWane Sat 21-Dec-13 21:08:19

Hooray Trazzles

And a VERY merry Christmas!!!!!

DingDongHairyPOnHigh Sat 21-Dec-13 21:12:31

What wonderful news!

Wishing you all especially Joe, a peaceful and happy Christmas xx

BuffyFairy Sat 21-Dec-13 21:22:22

That is the best news ever! Thrilled for you. Merry Christmas. 2014 is going to be amazing for you xx

ABitterPIL Sat 21-Dec-13 21:23:02

Amazing news. Merry xmas to all the trazzles

A