High dose chemo and beyond. Onwards and upwards hopefully!

[Trazzletoes]

Another continuation thread for Joseph's ongoing fight against the aggressive cancer, neuroblastoma.

Fingers crossed for no temperature. As mentioned above, it must be a good sign that Joe feels up to playing. Comes on, those neutrophils!

How are you doing, Trazzle? You must be suffering cabin fever. I hope you are managing to get yourself a break now and then (although I know Joe wants his mummy close). I also hope your gallstone pain has settled down?

Here's hoping there's been more playing today and really hoping that the temp didn't materialise xx

Hi!

Cabin fever = YES! I get out for maybe in total 1-2 days per week, plus half the nights and 30 mins to an hour per day. I'm fed up of sitting in this chair snacking! I need to exercise. I cannot wait to wake up with my family all under one roof! Still, a new shopping centre opens here on Thursday so that will divert my attention on breaks for a week or two

J is ok... Liver is still improving (hooray!) and his tummy barely hurts anymore. He also doesn't feel sick. Yay! BUT he has developed leg pain (this panics me because that's where his active cancer was left) and until yesterday none of the Drs could work out why his legs hurt but now we've been told it is likely his bone marrow (ouch!) where it is filling in the holes made by the chemo.

His neutrophils were 0.27 yesterday and I was terrified they were going to go down again today but they have rallied (3 cheers!) at 0.35. Again, a long way to go but every bit helps.

His skin is really starting to peel now - or rather, it just rubs off! It's creepy... His skin has gone very dark and then there are light pink patches of new skin. The inside of his mouth is a bit better but now his lips and gums have started to crack. He has huge chunks of dried blood all over his mouth so he can't close it. You can't get them off because they just bleed more. It's a case of waiting it out now. The neutrophils will help with that too - with healing his little body.

What I'm not looking forward to is that this renewal of skin is happening inside too. I'm promised some "interesting" nappy contents some time soon and, to be honest, I might just be sick. I'm really not good with gunk!

Gallstones - well I have my ultrasound appt for after Easter so that's good. I've also been surviving solely on chocolate for the past few weeks and the pain is much less so I guess that's a good sign because it would get worse, I guess, on such a poor diet.

But we also have worries about DD's feet. She is starting to walk with assistance now but walks entirely on the inside of her feet - the outsides are clear of the ground - because she has weird ankles. So she's off to the Dr tomorrow to see whether anything can be done.

J can't sit up anymore because of his leg pain but he is improving slowly and steadily. He's doing this

Oh the brave little sausage! :)
Thinking of you all as ever xxxx

Joe is so brave, and you are a great mother. Thinking of you often.

Just read latest update. Well done all the Trazzles on your resilience and strength. (even if you don't always feel that way!)

Glad the neutrophils have gone up a bit, that's great news. So good to hear that Joe is smiling! It must be painful with his chapped lips, but it's brilliant he is still smiling despite this. I hope his leg pain improves. Poor little thing, it's one thing after another, isn't it?

Good news about the gallstones, let's hope the pain is kept at bay at least until after Easter.

Is it a new shopping centre opening in the hospital? Hope there are some interesting shops for you to browse in other than the inevitable WHSmith and card shops. I got cabin fever after being in a hospital room with my DS for a week (obviously nothing compared to your situation), and I got such restless legs. I really sympathise. One thing I found helped the feeling of needing to get out and just run somewhere was standing up very slowly onto the tips of my toes, and then slowly and steadily lowering my heels back down to the ground. If I did it 20 or 30 times, it gave the backs of my legs a nice 'tired' feeling. And if you don't mind looking like an idiot if the nurse comes in and catches you at it, you can raise your arms above your head and breathe deeply into your ribcage as you do it.

Aah, well done micro-Trazzle for walking with assistance (sorry, I don't know DD's name, but since Joe was mini-Trazzle, she can be micro!). Fingers crossed the ankle thing is one of those things that self-corrects as she grows. I hope the appointment goes okay tomorrow.

Hang in there, you're doing great. Thinking of you all xx

Hurrah for the neutrophils and the improving liver! Hope the leg pain subsides very soon and is nothing to worry about.

Poor DD! Hope they can sort her funny ankles out for her.

Kalypso the shopping centre is in the centre of town, but the hospital is close enough that I can get there and back, with browsing a couple of shops, if I can get out for an hour.

Joe is super-brave and still lovely despite having to go through all this awfulness. I'm still amazed that he shares half my genes

If I remember rightly you're in Yorkhill Trazzles?

I went past the shopping centre yesterday, lots of clothes being put into the stores. Enjoy!

So glad to see Joe is doing ok, I keep popping on just to see how things are going.

I'd forgotten it was this Thursday! I am really looking forward to the new cinema but that's not until Late April according to the website.

I think you are both super-brave.

almostfifty ohhhh no, sorry, we're at the LGI in Leeds.

Good Morning trazzles

As it very often is, my first thought this morning was of Joe. Glad to see that things are going in the right direction.
I am not at all surprised that he shares half of your genes, that is some strong, loving, patient and courageous DNA you have passed on.

Sending love from Malvern as always

Trazzles, your descriptions of Joe and what he is going through always hit me with a slap in the face as I sort of forget exactly what is going on because you are always so positive. This is a good thing because if you are this positive with us the you must be doubly so with joe, and positivity is one of the best medicines. With you in his corner he is a very lucky boy.

My ds is just a year younger than joe, and it breaks my heart when he has a cold asked is miserable. I cannot imagine the heartache you must be feeling.

But he is a fighter, just like mummy. He will get through this.

I wish him as pain free a healing time as is possible and you all the love in the world. That includes dd and dh too.

Big squishy hugs (or bosies as we call them where I'm from)

Oh sorry Trazzles!

I hope you enjoy your hour or so out! Keep positive.

Glad to hear that he appears to be getting better.

Sounds like a good update yesterday

Feels like a good day for this blessing

Joe,
May the road rise up to meet you.
May the wind always be at your back.
May the sun shine warm upon your face,
and rains fall soft upon your fields.
And until we meet again,
May God hold you in the palm of His hand

Early morning here. Thought I'd splodge in and let everyone else know I've reported the twat above me

Hope today brings more good news trazzle. :)

More splodges for a good day from Solihull too.

P4B, splodging for you also.

Glaikit says what I want to say. I hope that Joe is continuing to improve and you are keeping strong x

Morning trazzle, he sounds super lovely and I am in awe of him. And you. Both of you are so strong.

Splodging for Joe and for Beatrice too. Hoping for continued improvement.

Trazzles it really doesn't surprise me that he shares half your genes - he is an amazing little boy, and you are an amazing woman.

Bless you all xx

Checking in on little Joe. Hope his leg pain is easing and his neutrophils continuing to climb (and his nappies haven't been too horrendous for you!) He sounds such a stoic little boy. I'm in awe of you both. Everything crossed for continued improvement.