Sanity juice

A bottle of wine appeared through the post not so long ago with this fab message:

"Sanity Juice!  We know you have no choice but to deal with life when it throws its troubles at you, but there are few people who would do it so well.  Thinking of you.."

Thank you lovely people.
x

Update 12/6

A short update to let you know that Wotsit is doing really well.  So well in fact he is going to school (in his words) ‘for the whole day’.  I am feeling a bit lost...  Really pleased that he’s going in and not too worried about how he’ll be.  The school have been fab, Pickle and his 'girl' friend are poised to look after him and I know someone will call if there’s any problems.  My only worry is about the germs lurking at school.  This is a risk we have weighed up and have decided, for now, that socialising with his friends and maintaining some normality is important if he is to make the transition to year 1 successfully in September.  Wotsit has promised he won’t use the water fountain!  And the school will let us know if there are any serious illnesses present.  We’ll see how he goes.

The next milestone for us is the repeat MRD test which takes place on 23^rd July with the results c10 days later.  We’ll update you then.

x

This is the public version - in reality I am feeling a lot more lost than this describes.  Walking home without Wotsit today was significantly worse than his first day at school.  Creeping into my mind was this sickening thought that one day he might not be here.  I know the odds are good (along with my perspective) but every now and again I imagine the worst.  Not helped, I think, by my father-in-law last night reminding us that 'we're not out of the woods yet'.  We know that, and we are very fortunate that we get through most days without worrying but every now and again we slip.  At least I do.

What was lovely today was seeing Pickle with a protective arm around his brother (showing him the new water fountain he's not allowed to drink from).  And yesterday, at the hospital, Wotist was also awesome undergoing an intramuscular injection which he doesn't like with only a few minor squeaks.  And that is where I get my strength from.  My amazing children. x 

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.

xx

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.

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...

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.