Update 24/4

What a lovely week we've had! Wotsit has been adorable this week and really well. Today is day 7 of his treatment and he has remained chirpy & cheeky throughout. We've had lots of lovely visitors and both boys have been spoilt rotten. Wotsit has had loads more energy, has been running around the playroom and playing football, very energetically. He's written a fab poem for his classmates (mostly describing his toilet habits!) and he's even made friends with the clowns! We occasionally have to remind ourselves why we're here...

Medically;
Wotsit's had a few nosebleeds and needed some extra platelets and he's had a couple of blood transfusions. He was on fluids 24/7 to flush through the kidneys as the leukaemia cells breakdown. These stopped on Monday so he's no longer attached to the drip all the time, which is fab, and we both get a lot more sleep. (Only up once last night.)

The results of his first lumbar puncture confirmed that the leukaemia cells had not reached the central nervous system - yay.

His appetite has increased as a result of the steroids and he wakes up talking about his breakfast (4 weetabix), the snack trolley and the hot dog he's going to have for tea! There are some things he's going to miss about the hospital... Thankfully, the steroids don't appear to have impacted his mood - yet.

Getting him to take his oral meds was a real challenge. Stickers, bribery and physical force have all been enlisted at some point. We've now found a happyish medium with Wotsit taking some as a tablet and lacing his milk with the rest.

Today we noticed he is walking on the points of his toes, and has some pain in his foot/leg, which is a worry as a side effect of one of the chemo drugs is foot drop. He does seem unable to put his foot flat to the floor, in stark contrast to yesterday's football. We are seeing a physio tomorrow to try and help with this. He has only had one shot of this chemo so far and has 4 more to go in the induction phase so not ideal.

Tomorrow Wotsit is going to the 'sleepy room' and actually looking forward to seeing the doctors in their blue pyjamas! He will have another lumbar puncture which will tell us how much the leukaemia cells have reduced by. However, I learned today that we don't need to wait for the results to be allowed home!

Roll on Friday...

Update 17/4

Yesterday Wotsit successfully had his portocath inserted (a line that goes directly into his side). It sounds terrible but is actually amazing and means no canulas required in his hands. This stays in for the 3 years of the treatment to enable his drugs to be administered easily. However, the line (that dangles on the outside) is removable and the 'hole' is effectively under the skin so when we're not in hospital, Wotsit doesn't have to have any dangly bits so can still run around and wreak havoc when he feels up to it.

When asked he says that nothing hurts so don't think it's too painful. However, once he's had some painkillers, he seems a bit happier so guess he must be a bit sore.

Following yesterdays bone marrow sample, Wotsit's diagnosis was confirmed today as ALL which is good news. It's the most common and most treatable form of leukaemia. His age and his white blood cell count (whilst high, it's not in the really high category) also go in his favour meaning the survival rate for this type of leukaemia is in excess of 90%.

His treatment starts tomorrow. This is the induction phase and lasts for 4 weeks.  It comprises one steroid med, taken orally for 28 days, and two chemo drugs (one given intravenously five times during this period and one injected twice).  He'll probably end up on other meds to help combat the side effects - anti nausea drugs etc.

On day 8 of his treatment (next Thursday) another bone marrow test will be done. If this is okay, we may be allowed home on Friday or Saturday. We are already very excited about this!  

We're still awaiting the results of the lumbar puncture which ascertains whether the leukaemia has gone into the central nervous system but there are no early indications that would lead the docs to think this is the case.

Other things we learned today -

It's probably a couple of months before he's back to school. It's mainly down to how he feels post chemo. He may be able to do more a bit sooner, we'll see.

There are 5 treatment phases in all. The first four seem to last about 7mths, if everything goes swimmingly. Then the final maintenance phase continues for c3 years.

Infection control is crucial.

Oh, and Wotsit's scared of the hospital clowns...

Think that's about it. Hope that's not too much detail. Pickle is good, v happy to visit his brother today. We are also doing okay, just tired (combination of snoring parent opposite, creaky nhs bed and Wotsit weeing every 2 hours because of the amount of fluid he's being given to flush his kidneys).

Finally, just wanted to say a big thank you for all your good wishes. If good wishes could fix our boy, we'd be home by now.

Letting the world (well, school Mums) know

I want to record this time so Wotsit and Pickle can understand a bit more when their older, should they want to.  To catch up on last few weeks, I'm posting some of the updates I've sent to friends and family. 

 

To the school Mums - 15/4

 

Unfortunately Wotsit was diagnosed with Leukaemia on Friday.  He is fine so far, just pale and tired with a few aches and pains and already a bit fed up with being prodded.  He is undergoing tests today to confirm his diagnosis which is believed to be ALL (Acute Lymphoblastic Leukaemia).  This is the most common and most treatable form of Leukaemia and the prognosis is as good as you could hope for.  His treatment will start immediately and will be chemo rather than radiotherapy.  He’s at the Royal Marsden so in very good hands.  We’ll be there for the next week to 10 days and then I think we’re allowed home if all has gone to plan.  The treatment for Leukaemia for boys goes on for 3 years and this will be mostly at the Royal Surrey, some at the Royal Marsden and some at home.  He will at some point return to school but no idea at the moment of when that is allowed to happen.  When he does return, the biggest concern will be infection control, ensuring that he doesn’t catch anything nasty that his white blood cells can’t cope with.  The school will help us all understand how we best do that at a later date.

 

A couple of children have asked where Wotsit is and, if you’re happy to, I think it would be useful to let them know he is in hospital and a bit poorly.  Mrs H will talk to them all in more detail later in the week once you’ve had a chance to do this. We’ve explained to Wotsit that his white blood cells aren’t working properly so he can get sick very easily and they’re also taking up too much space which means there’s not enough space for his red blood cells which is why he feels tired and is pale and achey.  He is cross with his ‘naughty white cells’!  There is a good resource which explains how the blood works if you feel it’s helpful to explain in more detail.   http://mytransfusion.com.au/sites/default/files/AmazingYou.pdf . He will lose his hair over the next few weeks and will probably gain weight from steroids and be moody etc so we will be thinking about how we explain this to him, and to Pickle, in due course.  We haven’t done so yet and would prefer if all the children learn this together if possible at the appropriate time so that Pickle isn’t asked questions he may not yet have the answers to.

Our primary concern is to get Wotsit well and for Pickle to remain secure and stable at school.  Pickle is very much missing his little brother, they are very close.  Whilst I know that everyone will wish us well and will be keen to know how Wotsit is getting on, we would really appreciate it if you would talk to us at pick up before we have collected Pickle.

Please don’t worry about what to say when you see us!  It’s fine.  Email if you want to (it’s sometimes lonely in hospital) and phone reception is terrible.

Wotsit's poetry debut

After a few days in hospital, I'm encouraging Wotsit to do some writing.  We settle on a poem about being in hospital that he can share with his friends at school.  And here it is...

My poo is sloppy
I have to wee in a pot
I sleep on a bed with bars
And it can move up and down
My medicine is disgusting
I eat it on a spoon with a yoghurt
I have a drip
My drip gives me fluids, blood or platelets
I don't need my 'antibotics' anymore
I've had lots of lovely presents and cards
I miss my friends.

Apparently, it was loved by RH!

Summing it up

I've been wanting to blog for a while but my Mum's been staying and somehow I don't feel I can blog when she's here.  Too worried she'll want to read it! 

Anyway, I wanted to record this message a friend sent to me soon after Wotsit's diagnosis - it summed up well just how I was feeling.

"It doesn't seem fair that you and Ben have another trial to go through after the heartache of losing darling Monkey.  This parenting lark has not been kind to you two... Our worst moment has only been a broken arm.  I don't believe in God so I can't pray for Wotsit but I wish with all my heart for a full and speedy recovery."

If I stay in bed...

Do you ever think, if I stay in bed and don't get up to face this day then maybe it won't happen? Today is one of those days.

I slept at home last night (7.5hrs of precious, uninterrupted sleep) so that I can take Pickle back to school and explain to his and Wotsit's teachers about the leukaemia. The thought of facing everyone at school who, on the face of it at least, will be going about their normal uncomplicated lives, is making me feel sick.

Then, later, I'll head back to hospital before Wotsit goes down to theatre to have 3 procedures under general anaesthetic. A bone marrow sample, a lumbar puncture to check no leukaemia has made it into the central nervous system and a shot of chemo for good measure to stop it going there. Finally, a semi permanent line will be put in his arm. He will wake up sore and grumpy.

I know it's what needs to happen and it's all helping Wotsit get better but somehow my bed seems more appealing. However, seeing as I can't stop time, here we go. Let's start this day.

Today

Wotsit told me it has been a good day. Not bad for a little boy who knows that his white blood cells are being naughty. Pickle also took the news well and asked lots of really good questions.

Wotsit has charmed a ward full of nurses and Pickle has demonstrated, as ever, that he is an amazing big brother.

I've phoned a lot of people and texted others, confirming again what I already knew - our friends are amazing too.

I've cried some* tears today. I think the realisation of what's to follow is sinking in and I'm sad about the impact this will have on my children's childhood.

Some good news tonight though. We are being transferred to the Royal Marsden tomorrow and the leukaemia appears to be ALL which is the most common and curable form with a 90% survival rate. Whilst our luck (clearly) isn't legendary, we are hoping for the best.

Night night x

*bucket loads