Planning Monkey's birthday celebrations

In previous years, the 9th of November has always been a day of remembering for me.  I've always taken the day off work, if it's a work day, and had a day's reflection.  Remembering the 9th November 2004 when Monkey made me a Mum.  I look at photos, videos, hospital letters.  I read this blog or take a visit to www.specialkidsintheuk.org and catch up with some 'Monkey' acquaintances.  I keep some sparklers (when I remember!) and we often light them on the 9th but only I know why.  I spell the names of all my children, tying them together in one of the only ways I can. 

It's a day when I smile a bit and cry a lot.  It's a day when I am so grateful for having had Monkey and so sad at having lost him. 

It's not a day that I normally share with the children.  I don't tend to wake up saying 'Today would have been Monkey's birthday'.  I don't want them to have that responsibility of thinking about how that means they should behave on that day.  In years to come, I don't want them to resent, in any way, my own feelings about the day.  I don't want them to say 'you always made us do this or that...'.

But, this year will be different.  Wotsit has been asking about Monkey's birthday.  He wants to know when it is and he wants to celebrate it.  I've drawn the line at presents but I am planning on (asking husband to make) an enormous chocolate cake!

Lumps and bumps

Today I went to the doctors for me.  Something I've been meaning to do for a while.  About 5 weeks ago I found a lump on my breast (less scary than it sounds).  Wotsit had climbed into bed and laid his head on my chest and it had felt a bit tender.  When I got up, I had a proper feel, found a bump under my skin and then mentioned it to husband.  Having spent a couple of hours on google, we were both pretty convinced it's nothing serious but knew it should be checked out. 

Over the last five weeks, I've found lots of convenient excuses not to go to the doctors; too busy at hospital with Wotsit, can't take Wotsit to doctors with me as he's neutropenic, I don't think it's a lump, more of a bump, it's not on my breast, more my chest, I haven't shaved under my arms... The reality is I was putting it off because not knowing is sometimes a safer place to be.  That, and some deeply rooted fear of making a nuisance of myself unnecessarily.  All utterly ridiculous and if a friend had told me this, I'd probably have pushed them (nicely) to one side and insisted on booking the appointment for them.

I finally ran out reasons not to go, plucked up the courage and made the appointment this morning.  And it was fine.  I didn't feel like I had wasted anyone's time, and I feel better about myself for doing what I know was the sensible thing to do.

Thankfully, the lovely doctor agrees that it doesn't feel like anything ominous but has referred me to the breast clinic to be sure.  Appointment to follow.

Update 14/8

So... Wotsit finally had his lumbar puncture on the 6^th August and we got the good news yesterday that his results were positive.  The likelihood of the leukaemia recurring is now within ‘normal’ limits (v small).  The hospital have also confirmed Wotsit’s course of treatment and he will be participating in the clinical trial which is what we were hoping for.  This means that over the next 8 weeks, once a fortnight, he will receive a very high dose of Methotrexate.  This is given intravenously over a 24 hour period.  We will be in hospital for c4 days during this time as he is only discharged once the Methotrexate has cleared his system.  We’re told that children following this protocol don’t seem to suffer too much.  Although of course this varies by individual child.  We’re hoping – given Wotsit’s track record! – that he’ll be in good spirits throughout.  The main side effects are hair loss (he only last about two thirds of his hair before) and mouth ulcers (so far, he’s not had any).  So, fingers crossed. 

This is the third phase of Wotsit’s treatment (Interim Maintenance) and it’s also when the 3 year countdown begins.  I.e. 3 years from now, his treatment (all going well) should be complete.  The fourth phase also lasts for 8 weeks and is called Delayed Intensification (similar to the first 2 phases with some steroids thrown in for good measure).  Then we move into the final Maintenance period.  As Wotsit is having such a high dose of Methotrexate during the current phase, he will not require any chemo via lumbar punctures during the final phase (previously given every 12 weeks).  He will also not be given Vincristine or steroids – we are really pleased about this.

It’s been a long while waiting for Wotsit to have the lumbar puncture and to get the results but it has meant that he has been chemo free for c4 weeks, so he is on top form.  Pickle is very happy to have his playmate completely back and we have had a lovely summer break so far.  The next 8 weeks (starting on the 21^st August) will be particularly tough on Pickle as he will miss his brother (possibly his Mummy) and will be a bit frustrated, and maybe worried, if Wotsit’s not feeling great.  Hopefully he’ll get through it okay with lots of support from us, school, grandparents & friends.

We’ve managed to keep Wotsit’s birthday a ‘treatment free’ day so looking forward to celebrating that on the 27^th.  He will also be able to attend his first day of Year 1 (although he will be whisked to hospital at 3.15pm the same day!).

We’ll keep you posted on how he’s getting along and see some of you soon.

Lots of love

xx
 

P.S. Participating in a ‘trial’ seemed quite scary initially when you’re trying to ensure your child is fully fixed from leukaemia.  Rest assured, they’re not allowed to do anything crazy!  The protocol Wotsit will be following is tried and tested in other countries and is the method the UK is hoping to adopt as it should give children a much better quality of life during the treatment.    

10th August 2013

The post I've been meaning to write for a while...

It's been 6 years since Monkey died.  Every year on the 10th August, for as long as I can (i.e. for as long as my children will indulge me!), I've promised myself we'll do something nice with people we love.

This year, it fell on a Saturday.  I had it all sorted weeks in advance, planning a trip to visit my best friend and her family for an overnight stay.  This year though, I did not wake up remembering the significance of the day or the reason for our trip.  Until I had a text from my Mum, it could have been any old Saturday.  I felt a bit odd when I realised this.  A bit lost for a few seconds.  But I know it's okay.  You are always here Monkey - whatever the day. 

We had a fab day, I got an extra big hug from Auntie S.  We played in the park and ate yummy ice-creams.  All was calm.

x 

Update 24/7

It’s been 6 weeks since my last update and I thought you might like to know how we’re getting on.

 

Wotsit has been amazing.  We are at the end of the intensive 10 week consolidation phase and he has been really well.  He’s been at school perhaps 30-50% of the time with the chemo having very little impact on his energy levels and general wellbeing.  Participated in sports day, went on his school trip, progressed hugely in his reading (still need to work on the writing!)...  He was admitted to hospital last week as had a slight temperature but, in himself, he was never anything more than ‘a little under the weather’. (Which made containing him in a 10 by 12 foot room for 5 days, even more tricky).  He’s needed the odd blood transfusion and some platelets but has otherwise been really well.

 

He was supposed to have a bone marrow test yesterday where they repeat the MRD test.  However as his neutrophils are currently 0.0, it was postponed as there’d be no cells for them to look at.  The test should now take place next Tuesday and we’re hoping for the results on the 6^th August.  At that point, the next course of treatment will be agreed.  Assuming the MRD results show Ollie as being low risk, we would need to decide if we’d like to participate in the next part of the clinical trial.  This would mean a higher dose of chemo in the next 8 weeks (requiring hospitalisation once a fortnight for 4-5 days) but as a result, there would be no lumbar puncture every 12 weeks in the last phase of his treatment (lasting about 2.5yrs).  On the trial, there is also a chance that in the last phase, he might not have to have Vincristine (our least favourite chemo drug) or steroids (my least favourite drug by far!).  However, the trial is randomised.  So, even if we opt for it, we may be chosen to follow the standard path.  If the MRD is not low risk (which occurs in only 2-3% of cases at this stage) then alternatives such as stem cell transplants are considered.  We shall see...    

 

An emotional last day of term today.  We’re hoping we’ll be able to fit in some fun during the summer holidays as well as a 5^th birthday party for Wotsit!

 

Lots of love...

 

Holding back the tears... or not

So today was an emotional day in our house. By the time we left for school there'd been some shouting (from Pickle, Wotsit & me) and loads of tears (from Pickle, Wotsit & me).  Tensions were high.  Pickle was saying goodbye to his Year 1 teacher who is leaving the school.  He loves her (I love her too). Wotsit was disappointed he wasn't going to school (I was disappointed too) and hoping to sneak in one last hug with Mrs H and say goodbye to his year 6 'special friend' (and maybe collect a present or two...).

Me?  I was tired - waiting up for husband to come home last night - and I was sad.  Sad for the boys and sad at moving on from two lovely classes that have helped us so much this year.  I wrote jaw-droppingly sentimental thank you cards and smudged the ink in all of them.  I even emailed the headmistress to tell her how wonderful I thought her team were.

We made it out the door and walked calmly to school with Pickle needing the occasional hug.  As soon as we got to the playground, I was teary again.  So many children excited about their last day at school, so many parents celebrating the end of their child's first year and looking forward to the summer ahead.  It hurt.  I felt really sorry for us, for me.

Finally, cards and hugs delivered and presents collected, we headed out of the playground.  Me with my head firmly down, avoiding eye contact of any kind.  I think a new friend saw the pain, she pulled over alongside me on the way home and invited us to the park after school.  Her kindness meant I welled up again.  Still, I had to refuse as Wotsit's not up to parks just yet.

We had a chilled out morning, made a model aeroplane, cleaned up and went shopping.  School finished at 1.30pm.  We waited for Pickle at the front of school (so Wotsit's not loitering amongst any germs) which helped us avoid the celebratory, end of term playground spirit.  We collected Pickle who was sad but cheered up when he was told he was popping in to see his friend.  And that was our tuning point.  It was lovely, and necessary.  The children played beautifully, I got to share some of the things going on in my head and, 3 ice lollies later (who needs wine?), I finally relaxed.

Certificate assembly

Wotsit and I snuck into school today for 5 minutes.  A lovely moment.  Whole school assembly, angelic singing coming from the hall.  As the children filed in past us (we were semi-avoiding germs) all the reception and year 1 children called to Wotsit who responded in kind.

We were called in for Wotsit to receive his certificate for amazing progress in reading (see what we've been doing when he's not been at school..) and his big smile.  His lovely class teacher tried to hold it together as she spoke but failed - I wasn't far behind her.  And I saw Wotsit's reaction (an enormous smile and his whole face lit up) at the point he found his brother in the crowd, smiling back at him.  As we left the school he turned to me and said "Mummy, I'm really proud of me too".

Me too, Sweetie.  me too. x

It's hard...

Wotsit's back from his short stay in hospital - 5 days in all.  In himself, he was never anything other than a little under the weather.  Which made staying in a 10 by 12 foot room for 5 days reasonably challenging!  He missed his brother passionately (Pickle popped in on Days 3, 4 & 5) and the feeling was mutual.  Tough going on hubby and me as you don't see each other and you're never quite sure how long it's going to go on for.  Missed out on an evening with new friends too.  And whilst our overwhelming priority is to get Wotsit well, it's hard to miss out on the fun times.

Now reasonably back to normal (except for appetite remains suppressed and he is losing weight - currently down to 18kg) although Wotsit's missing the last few days of term as his neutrophils are currently 0.0 so no immunity to speak of.  The low count also meant that today's lumbar puncture was postponed to next Tuesday.  Not the end of the world but hardgoing as it means we are still unsure about what the next treatment phase will entail (as it depends on the results and - if we participate in the clinical trial - which route he goes down).  Planning our summer is proving tricky...

It's hard to know whether we should participate in the trial or not.  The trial would mean that in the next 8 week phase, Wotsit would have more intensive chemo that would require 4-5 days in hospital every fortnight.  There goes the summer holidays and Wotsit's 5th birthday... But, as part of the trial, there is a chance that in the maintenance stage (lasting 2 and a half years) he wouldn't have to have a lumbar puncture every 12 weeks and possibly no Vincristine (our least favourite chemo drug but not all that bad) or steroids - I'd give quite a lot for Wotsit not to be on steroids! My gut feel, driven primarily by my head, is that we opt for the trial.  I think it would give Wotsit the best quality of life during his treatment.  However the trial is randomised so we may not get that option anyway.  So, I guess we need to go with the flow - whatever will be, will be...

Reading this back, I've used the word 'hard/tough/challenging' 5 times in 3 paragraphs.  Think that probably says something about where we are right now.  It is hard.  BUT it is also fine.  We are together, Wotsit is relatively well and our children are gorgeous.

Day 51

I should prefix this post by saying how well Wotsit has been. In at school c50% of the time, fully participating in sports day (a few tears from mummy) running, climbing, bouncing, cycling and paddling. He's having a high dose of chemo and requiring blood and platelets intermittently but has carried on as usual. He's been neutropenic for weeks but has been amazingly well.  Quite frankly, I was beginning to think (hope) he was superhuman.

So, Day 51 of Wotsit's treatment starts as usual. We scoot to school to drop off Pickle. Wotsit tells his teacher he'll be in after lunch. I say "we'll see". He's due chemo at 10am and I'd prefer it if he didn't go straight back into school. We scoot home. 

I squeeze in 30 mins of work before heading to the hospital. As normal everything takes a little bit longer than it should but it's all done by 11.45. Our lovely chemo nurse says she won't see us for a while as the next phase of our treatment will be at the Royal Marsden, unless Wotsit is ill. We say "in that case, we hope not to see you for a quite some time" and head off. 

We have a quietish afternoon and Wotsit seems a bit subdued (but then, he has just had chemo). We sneak in and watch his brother's end of year performance for siblings just in case Wotsit doesn't make it to assembly the next morning (what foresight!). We chill at home and then collect Pickle in the car after school as Wotsit is a bit tired. (Plus it's 30 degrees outside and we're all close to melting point). 

The boys play beautifully, they've missed each other at school today. Just before tea, Wotsit tells me he's cold. Given it's now about 120 degrees outside, I realise that's not quite right. His temperature is just over 38 degrees so we wait the designated hour (in which Wotsit refuses tea) and take it again. The same. 

So, here we are. Back much sooner than we thought. Admitted for 48hrs for a shot of IV antibiotics and some blood for good measure. No obvious signs of infection; hopefully it's just viral and we'll be home again soon.

I confessed to the lovely chemo nurse that I'd been hoping Wotsit would achieve some kind of record - the most number of days into his treatment without needing to be admitted. She said, he did.

Just one wish

If Pickle found a magic lamp with a genie in it, he would use one of his three wishes to make his brother's leukaemia go away. In fact, even if he had only one wish, that's what he'd wish for. As he thinks it's pretty unlikely he'll find a lamp anytime soon, he's suggested we all write to Father Christmas instead! Beautiful boy x

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.

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

Sleepy talk

"Mummy, Katie's being a good hospital person."
"She is darling, yes".
"Mummy, I'm having porridge for breakfast. Katie doesn't know if there's raisins." Pause. "We'll just have to wait and see."
I love that Wotsit is praising Katie in the middle of the night as she sorts out his drip. I also agree - she's awesome. And I love that he's still thinking about food!

Beautiful, beautiful boy x

A new journey

Today we found out wotsit has leukaemia. He's been pale for a few weeks and tired. A few doctors appointments later, we're referred to the hospital for a blood test. Five hours later, three doctors enter the room and ask if I'd like to call anyone. That's when you know it's not good news.

Wotsit so far thinks it's one big adventure. Thinks it's brilliant we're having a sleepover in hospital. Tomorrow we'll find the best way to explain to a four year old that his white blood cells aren't working properly. And then we'll tell his brother.

I'm hoping this story will have a happy ending. I will not lose another child.

When I'm grown up I will forget you

Wotsit is now 4 and a half.  No less cheeky, no less gorgeous.

At bedtime tonight, I sang (Monkey's but now Wotsit's favourite goodnight song) Hush Little Baby.  And then,

Me: I love you
Wotsit: I love you too Mummy.  I'll always love you.  I'll always love you... until I forget you.
Me: You won't forget me darling.
Wotsit: I will.  When I'm grown up I will forget you.
Me: Sweetheart, you won't forget me, I haven't forgotten my Mummy and I'm grown up.
Wotsit (voice trembling):  But when I'm really really really old, I won't be able to remember you.
Me: Don't be sad my love, yes you will.
Wotsit: Not when I'm really really really really old.
Me:  But remember sweetheart, you can't forget me because I'll always be in your heart.
Wotsit:  I know but when you die Mummy I want to have a statue of you in the garden (if I have a garden) so I can always see you and never forget you.
Me: You could look at some pictures of Mummy.
Wotsit: I want a statue.
Me: Okay darling, I love you so much.
Wotsit: Night Mummy, I love you too. 

Well that's settled then Wotsit.  I hope you have an understanding wife...