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

847 replies

Trazzletoes · 17/09/2013 20:47

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.

OP posts:
BelleOfTheBorstal · 03/01/2014 22:19

Yayyy! You guys got to spend christmas together!
Pardon the french, but Fucking Amazeballs!
Hope it all continues smoothly xxx

toffeelolly · 04/01/2014 11:25

Great news, trazzle hope you all have a good year.

desertgirl · 04/01/2014 17:10

still thinking of you all and hoping the good news keeps coming :)

saffronwblue · 05/01/2014 21:03

Hope the new normal is going smoothly for you all.

ClockWatchingLady · 07/01/2014 11:50

Thinking of you all lots, Trazzle. Hope you're enjoying 2014 so far Smile

jugglejugglejuggle · 13/01/2014 19:22

I think of you all often too Trazzles. Hoping that no news is good news and joe is getting stronger day by day.

bobkate · 13/01/2014 19:55

Same here Smile Hoping all going well xx

onedev · 13/01/2014 21:10

Me three - splodging as always.

ajandjjmum · 15/01/2014 17:19

Sending you good wishes Trazzles - hope 2014 is fab for you and your family.

nearlyreadyforstatelyhomes · 22/01/2014 21:33

How are you and joe Trazzles?

KnitActually · 22/01/2014 21:40

Hi Trazzle, so happy to see that Jo is doing well x

onedev · 26/01/2014 09:23

There's a thing going round my Facebook at the minute saying 'Sometimes real superheroes live in the hearts of small children fighting big battles' & I thought of Joe when I read it. Hope you're having a good January & Joe is still making great progress. Splodging as always.

kohl · 27/01/2014 19:12

Hope the Trazz family are enjoying January at home!x

sanschocolat · 31/01/2014 23:29

Just dropping by to say "hi" and "hope you are enjoying the new normal"

Still splodging prayers/positive thoughts too! x

NorthernLurker · 08/02/2014 19:38

Hoping everything is continuing very ordinary and normal for you all. I continue to pray for Joe and you Smile

onedev · 08/02/2014 23:28

Exactly as Northern says from me too. Smile

barefootcook · 09/02/2014 02:04

I do too Trazzle. I hope things are chugging along peacefully. Have you made any progress with a school place for Joe?

Trazzletoes · 09/02/2014 09:28

Oh gosh sorry I've missed all your messages! This thread dropped off my TIO. I guess that's a good thing... Lots to tell you!

Joe had been doing very well with movement and a fortnight ago he managed to get to Socatots and play football with DH! Amazing. He hasn't walked again since then though. At all. As his leg hurts. We've had him checked out at the hospital and nothing came up on x ray so his consultant is waiting to see what develops, if anything. Tense.

He has his first check up next week at 2 months post-treatment. If he's not back on treatment by 1st march we can stop boiling water and sterilising everything and give him yoghurt to eat! (If he eats it... Grin )

In very exciting news, Make A Wish have agreed to grant his wish to go to Mickey Mouse Land so we head off in a couple of months... Too exciting! I just really hope he doesn't get sick beforehand. Or while we are there.

He has been a bit under the weather on Wednesday which led to a trip in to hospital but they thought he had a virus so sent him home - fine. We were then called on Friday to be told he is growing a big in his Hickman line. Took him back in and they assessed him as being reasonably well (he is completely normal in himself) and have sent him home with stronger antibiotics. Line infections can be very serious and make children very unwell very fast - like ambulances, intensive care etc so we are very much hoping the antibiotics work well. However he is having his line flushed on Monday and again the following Monday so those are typically the times he would get very unwell so we will be keeping an eye out. I guess the bugs multiply in the line and then when you do anything with the line it forces all the bacteria in to the body at once and it can't fight back effectively. I have no idea whether that's true or not...

So broadly, yes, he's doing great. My DM moved back home a couple of weeks ago so we are very much back to finding normal.

OP posts:
onedev · 09/02/2014 10:51

So glad it's positive - still emotional obviously, but glad 'normal' is happening.

Gingers crossed for Disney - it's amazing & you'll all have a fab time. Your DD must be getting so big now too & loving having her big brother to play with.

NorthernLurker · 09/02/2014 19:58

Oh brilliant. Ok will be praying especially about the line and the leg.

saffronwblue · 09/02/2014 20:01

sounds as if it is a still a rollercoaster but lots more upswing. Will be sending thoughts re line and leg.x

barefootcook · 09/02/2014 20:10

Wow- sounds like things are going really well. Good for you.

pepperrabbit · 09/02/2014 22:07

Trazzles how nice to hear from you, and lovely to have something to look forward to for the family.
Hope all goes well with his line and the abx kill the bugs.

ExitPursuedTheRoyalPrude · 09/02/2014 22:12

Yay for the holiday.

PollyPutTheKettle · 09/02/2014 22:48

Lovely to hear your news. Fingers and toes crossed for the leg and line.