Sunday, 23 March 2014

Still here

Whilst 'still here' could be referring to the unplanned and rather long absence from writing on this blog, it's actually referring to Monkey.  Woke up this morning to Pickle insisting I go into his room to listen to a CD he's rediscovered (on the CD player he's recently rediscovered in his very untidy bedroom)!


Wotsit's in there too.  "Mummy, you have to listen to this."  I flop down on Pickle's bed (it is 6.30am on a Sunday morning after all).  Pickle hits play and climbs on to the bed.  Wotsit follows.  We have the best cuddle and then Pickle says "I think I would cry Mummy if instead of Bonnie, it said Alex.  Bring back my Alex to me..."  Me too Pickle.  Me too.


He jumps up and shows me on a piece of paper a list of numbers.  "These are the songs that remind us of Alex, Mummy".


I'm not sure how number two son became such a sensitive soul.  I suspect it does stem from us losing Monkey when he was so young; perhaps it's something about the way I was when he was little.  I don't know but I hope he can harness it in some way as he grows up.


Anyway, Monkey - it is wonderful to know that you are still here.  Not only in my thoughts but in their's too.

Wednesday, 25 September 2013

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!

Tuesday, 24 September 2013

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 6th 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 21st 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 27th.  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.

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.