Wednesday, 24 July 2013

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 6th 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 5th 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.

Tuesday, 23 July 2013

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.

Wednesday, 17 July 2013

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.

Monday, 15 July 2013

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