Friday, 30 March 2012

London, and the tough road ahead...

Well, what a ball Oscar had in London, and what a positive experience it was for us!  We were obviously quite anxious about what would be discussed and what it would mean for us, but overall we feel reassured and ready to climb the steep hill ahead.  Oscar was behaving quite badly on our journey Belfast side, which none of you will believe (NO MORE HORRID HENRY DVDs), but he had a sleep on my knee in the plane, and once we arrived in London he was back to himself.  It's funny the looks you get when you are trying to be stern with a child so obviously unwell - but they still need discipline in order for them to return to a normal life down the line!  It was his first ever flight, but he took it all in his stride, take-off was the highlight.  He loved the hustle and bustle of getting the train, then the cab to our hotel, and is still talking about all the ambulances and fire engines he saw during our stay!

The hotel was quite grim (to say the least), but as it was only 1 night we decided to grin and bear it.  We found a gorgeous Italian restaurant nearby, and Oscar ate garlic bread and pizza dipped in olive oil and balsamic vinegar like it was going out of fashion!  He has quite advanced tastes for a 3 year old, we discovered in the Merchant Hotel he loves breads and tapenade!!!  He even got to meet the chef, which is his favourite thing to do if we eat out.  We wandered around the UCL Hospital area, saw a really interesting art display about medieval medical instruments (some of which brought tears to our eyes with both laughter and horror - Fakir's sandals impressed me the most!), and got our bearings of our potential new home for a while.  We made sure we knew where we were to go the following morning, and had an early night, writing our list of things we wanted to cover with the consultant the following day.

We were awake from the crack of dawn on Wednesday morning, had breakfast (I couldn't even eat with nerves), and made our way to UCLH.  What a lovely modern and well equipped hospital it seems!  Oscar absolutely loved the playroom with the "real" motorbike, and all the staff were really friendly and helpful towards us.  We met the consultant who has been in discussions with our Belfast team about what is best for Oscar, and we had a full and frank discussion about the path ahead.  No need to bore you with the finer details, but the outline for us is this:
1. another stem cell harvest procedure
2. TVD chemotherapy (which is very toxic and has a lot of side effects)
3. MIBG therapy (radiotherapy involving nuclear medicine) in London for 4 weeks
4. stem cell rescue (Oscar is given back some of his harvested stem cells to help him recover)
5. high dose chemotherapy
6. stem cell rescue (Oscar receives more of his harvested cells to recover a second time)
7. immunotherapy?

Oscar's consultant here in Belfast is drawing up a timetable, but this treatment plan is due to begin next week.  I am so eager to get back onto treatment, even though it is an AWFUL process to go through.  His hair, eyelashes and eyebrows are growing steadily at the moment, but everytime I look at them all I think about is what else is growing inside his little body.  I've often thought about keeping another private blog "The thoughts of a mother...", but I think it's best to keep those shut away and only occasionally unleashed on you all (as in last Thursday's angry post!)

I'm sure you appreciate reading this list that a very tough few months lies ahead for Oscar and us, and his little body is about to take a huge battering.  But we have to keep our eyes on the end prize, and just help Oscar through this as much as we possibly can.  Our little warrior, we are fighting this fight with him every step of the way, and just couldn't be any prouder of him than we are.  Every day we see his little smile and get a hug is a GREAT day.  Love you Oscar (and Izzie of course!) XXXX

*Photos to follow, too tired to upload them now!*


  1. Martina Miskelly31 March 2012 at 08:13

    Leona you are so strong, and your wee man is a fighter. Oscar and your family are in our thoughts and prayers. Take care Martina x.

  2. you really are an inspirational mum, if I'm half as good as you I'd be very happy. Glad to hear you've got a plan again.
    Lara x

  3. Your little warrior is right! Stay strong Leona. You're little boy is soo fortunate to have such a wonderful mother. Thinking of you all everyday, Kiera xxx

  4. Hi Leona, sorry to write here I can't find any contact details on your site. Im Corey's mum, we are due home this week having come here for immunotherapy.
    I hate to give you more stress but I would start to fundraise for immunotherapy abroad. Corey was randomised in the uk to receive no drugs (il2 or gmcsf) and only when we got here, did the experts tell us how important they feel those drugs are.

    Feel free to email me if you wish The best advice is to have money in a pot so all your options are always available. Jo x