Tuesday, 28 May 2013

Update 28/5

Another week with minimal medication and no steroids since Wednesday; the induction face is finally complete.  As a result Wotsit’s appetite is subsiding, along with his cheeks and tummy, and he continues to be a little more active, which is so lovely to see.

Unfortunately the results of Wotsit’s MRD test today puts him in the ‘risk category’ (they’re not allowed to say ‘high’!) of the leukaemia recurring.  The stats, for those who like them, are a 30% likelihood of the leukaemia coming back.  All this means is that they change his ‘consolidation’ treatment plan with the aim of significantly reducing these odds (back to under 5%).  So, we are switching from Regimen A (the 3 week walk in the park I mentioned last week) to Regimen C, a 10 week much more intensive treatment plan.  Naturally we’re disappointed, as it will mean a much tougher time for Wotsit.

It will also mean that he is likely to be neutropenic again in the not too distant future.  Coupled with a) the number of medical appointments and b) how he is likely to be feeling, I think it is unlikely he will make it back to school (at least in any consistent way) for the remainder of this year.  So, I will need to up the ante on the home schooling!

A few people have asked what the overall treatment schedule will be.  We think the future looks something like this, but don’t hold us to it:

-          Consolidation phase – to end July (camping in France is looking pretty slim!)
-          Interim maintenance phase – to end September (yay, we should get to celebrate Wotsit’s birthday at a time when he’s feeling pretty good and hopefully get him settled in Year 1)
-          Delayed intensification – to end November
-          Maintenance phase – to end November 2016 (I promise not to send weekly updates, every week, until then J)

Hope all is well with you all.

Update 21/5

Just a quick update to say all is well.  It’s been a couple of weeks since the last update and Wotsit’s doing brilliantly.  There were some tricky days at the beginning with Wotsit resisting some of the procedures but he is now completely amazing.  Doesn’t even need a cuddle when the line is going in – simply holds his breath.  Removing dressings is still a bit distressing but much improved.  It’s amazing how quickly little people adapt.

Tomorrow we will have completed the ‘induction’ phase and Wotsit has fared very well.  The steroids have been the trickiest bit by far with Wotsit begging for spaghetti carbonara (and, more recently, cabbage!) on a daily basis and wanting to eat almost permanently.  He has also been a fraction grumpy on occasions.  Particularly when he was nil by mouth until midday last Thursday – it was a v long morning.  However, the end is now in sight and he takes his last dose tomorrow.  We are all very excited!

We met the (very nice) consultant leading Wotsit’s care today.  He had the results of the bone marrow which shows the leukaemia is in remission (i.e. less than 5% of his bone marrow is now made up of leukaemia cells).  We are awaiting the MRD (minimal residual disease) results which should be available early next week.  This is a DNA analysis which is able to determine the likelihood of the leukaemia recurring.  Ultimately, this will determine his next course of treatment.  However, we begin the ‘consolidation’ phase before we have these results – we simply switch to a different plan if the MRD suggests they need to throw more treatment at the leukaemia.  The consolidation treatment we are currently expecting is a 3 week plan, comprised of 3 lumbar punctures delivering chemo into the spine and a daily dose of oral chemotherapy as well.  In comparison to the induction phase, it feels like a walk in the park.

Wotsit’s blood is also looking good.  This is great for lots of reasons.  He has more energy and has really started to properly play with his brother and friends again.  He even cycled all the way around the block today as well as walking to school twice.  He was so proud of himself – almost as proud as I was of him, I think.  Plus he is no longer neutropenic which will stand him in good stead for fighting infections.  His blood results will fluctuate as the chemo continues to give his body a battering but it’s great to know, that without a transfusion, it is starting to do its job again properly. 

So, we will hopefully be planning his return to school at some point after half term – once the community nurses have been in to school to help them understand how they can best support Wotsit.  Wotsit is excited about this but worried that Mummy won’t have anyone to talk to!

Pickle continues to be amazing.  He has handled Wotsit’s mood swings/outbursts with a maturity beyond his 6 years of age (sometimes beyond my 40 years...).  He’s been very patient and incredibly kind and he is so happy to have his brother feeling a lot more lively.  He has had his moments of being a bit grumpy/clingy/emotional/challenging but I think that’s pretty normal.

All in all, we’re really happy with how everything is going and looking forward to (fingers crossed) a little bit more normality in the weeks to come.

Monday, 13 May 2013

Update 3/5

Wotsit was discharged last Friday and we've had a great week at home. Having the whole family in one place is undoubtedly easier and a lot more fun. Wotsit's highlight of the week would probably be chips and ketchup at the local pub. He talks of little else. The steroids have kicked in big time and are now affecting both appetite and moods. I hate to think what will happen if we ever actually run out of houmous!

Medicine became a huge battle again once we came home (tears all round) but Wotsit has decided that 'quickly is best' and is now being a superstar. No fuss at all. He was sick a couple of times last weekend but anti-sickness meds are currently doing their job v well.

The community nurse visited Wednesday and reattached Wotsit's line so she could take blood. Not a pleasant experience. Wotsit doesn't seem to mind the needle but has a pathological hatred of cold cream and tape. I feel sorry for the neighbour who was knocking on the door at that particular time! I'm hoping that this will become another minor procedure which Wotsit will learn to tolerate soon. The blood results weren't too bad but he's had a blood transfusion today just to boost his haemoglobin and platelets.

The tippy-toe walking, brought on by the Vincristine, has reduced but still need to watch for this (and continue the physio) as the drug builds up in his body. Wotsit's not particularly keen on walking far at the minute so we've borrowed a pushchair to help us venture to the park. However, I think he's enjoying being pushed a little bit too much...

Wotsit's provisional bone marrow test yesterday wasn't required, as last week's test showed a good enough reduction in leukaemia cells. A good sign at this stage.

Chemo today. All good, just a lot of hanging around. Appointment at 10, left hospital at 11.45. Then back for blood transfusion at 2.15. Finally home at 6. Luckily, Wotsit has been showered with gifts (thank you & no more please) making entertaining him pretty easy. If that doesn't work, I just ply him with food.

We've had a few visitors this week and it's been great to see some friendly faces. Wotsit's been tired so hasn't been running around with his buddies but he has enjoyed their company. I think they're a little more entertaining than Mummy!

I'll try and update weekly but if you don't hear from us, please don't worry, it means there's nothing exciting to say and therefore all must be well.

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...

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."