Ooh dear, I haven’t updated for a while….  The last day of antibody and IL2 was pretty uneventful.  Well, when I say that, Robyn had gained a kilo in fluid, had come out in Hives in various places (not bad though) and her eyes were very swollen – due to the fluid gain.

Robyn was discharged on the Monday morning and Greg, Tommy, Bernie and Tom came to pick us up.  We had so many giant helium balloons that I was concerned how they were going to come with us but I am still staring at them now (sigh…) so someone must have managed to transport them!

It took Robyn a few days to recover from this week of combined antibody and IL2.  Bernie came so that thrilled Robyn and took the pressure off of me!!  We had a lovely time whilst Bernie was here but much of our time was spent at the hospital :(

We went to the King of Prussia shopping Mall where Robyn once again went to The build-a – bear store.  The last time she went here was when Amber, Rick and Jade (Nanny’s friends who live here) took her and brought her her beautiful teddy named Sparkle.  They then so kindly took us to Maggianos, a fantastic Italian restaurant and we had a great time. The food was wonderful and Robyn has been begging to go there again ever since.

Bernie left us and then we were on our own for a week.  The time flies so quickly, we are at the hospital practically every day – usually for physical therapy.  A couple of weeks ago it was decided that Robyn would have plaster casts on both legs to fix her feet in 90% angles.  This was very painful for about 10 seconds on Robyn’s poorly (right) foot and because Robyn’s other foot was a bit tight, a cast was put on that leg too.

The change in her was amazing!!  That week she was walking, albeit in a slow and clumsy manner without any help and was actually playing hide and seek with the other children at the RMH.  I found this amazing and very emotional as Robyn has not walked since September the 8th – a long time!!  She had done so well that week that Abbey (Robyn’s Physical Therapist) decided to remove them and when they came off so did a little of Robyn’s confindence :(

On the plus side Robyn has really enjoyed some hydrotherapy sessions in the hospital pool and she wouldn’t be doing that if there were casts in situ.  Robyn finds physio very hard work but she has a very good relationship with her physio and she is so kind but very firm with Robyn-  the perfect combination.

Robyn has been through so much it is very difficult for her to motivate herself to do her exercises.  When I think back to the early days of physio both here and in the UK,  I remember myself wondering whether Robyn had given up on the idea of ever walking again and I could see in her, almost  an acceptance that this was going to be her life now…

In hindsight I now realise that this was the poor child recovering from the most aggressive treatment that the medical world can throw at a human being.  Transplant, as they say here, sucks.   I have been here too long!

Robyn had her transplant at the beginning of October and it is now the beginning of March – over 5 months on and she is still frail, anorexic and fragile to look at.  She is however, eating more, has an improved colour and is gaining strength by the day.

We had a fabulous week with Bernie and it went by too fast!  We were so glad she could come and realised that it was really hard for her and George and he is a credit to her for being so understanding.  It’s a long way for your mum to travel if you’re not used to it and you’re 10.  Well, hopefully we will see them soon- in about a month and a half if Robyn’s Doctor agrees for her to go home for a couple of weeks in April.

Tom continues to be such a support to us.  We went up to his house for dinner and Delores (Tom’s wife) cooked us roast potatoes.

Well not JUST roast spuds- chicken and vegetable too!  It was delicious and Robyn had such a wonderful time playing with Molly, Tom and Delores’ Golden Retriever.  Robyn adores  Molly.  We had such an enjoyable evening and just as Robyn was about to go to sleep that night she said “Actually, Delores roast potatoes were delicious”.  I agreed with her and she then closed her eyes and went to sleep!

The Ronald McDonald house is also still putting up with us and continues to provide delicious food every evening.

Consequently, I continue to balloon and I will bore anyone stupid enough to stick around me long enough about my struggle to fit into my two remaining tracksuit bottoms that did fit…Is  normal to 3 chocolate brownies for dessert?

So for those of you who may be reading this blog because they are thinking  this therapy may be suitable for their child,  this course was harsh but manageable for Robyn.  If your child has a hickman line then access for the drugs should be ample.  For those with one Port – please remember that a hickman line or a second port will probably be necessary.

For those of you checking in to see how we are doing, well we are very much up and down.   This is a very strange journey.  I still cannot believe this is happening to us.   I am very frustrated and upset by the plight of children with Neuroblastoma in the UK and all I would like for them is the same opportunities with regards to Neuroblastoma treatment that the children here in the US have access to.  I live in constant fear for Robyn and I know that as a parent with a child with Neuroblastoma (or any paediatric cancer) I am not alone.

Robyn so desperately misses her class mates and I want her to get back  to school although I am frightened that her mobility will not be as it was before this nightmare by then.  It has been 10 months since she has been to school and I worry how she is going to settle.

I worry, not like I did when she started reception, this is far worse!  I also worry about her finishing treatment.  I hate for her to be pumped full of chemicals and have needles stuck in her and to be prodded and poked but at least this is all keeping the disease at bay.

I do know that,  from speaking to other parents, this is a normal concern.

Thank you to all those people who continue to raise money for Robyn.  It doesn’t go unnoticed!  Many thanks to the Cuckoo Cafe in Hanwell,  All the girls and customers at Angela Francis Salon (as usual!).  A huge thank you to  Olivia’ with her Hip Hop with livvy’.

Genevieve is doing a Bag2School on the 31st March, this time at St Augustines- Thank you Genevieve for organising this and thank you to everyone in advance for any contributions.   Thank you to Sara Stevens and her colleagues from the Cardiff Nuance team who have been raising funds for Robyn too     Marie for her 10k run – wow good for you! Hopefully the next time you plan something like that, I’ll be doing it with you!

I’d also like to thank Gary, a friend of Fiona’s and a parent at St Augustines for asking Fern Brittan to ring Christian O’Connell at Absolute Radio (was Virgin) to see if they could get a donation for Robyn’s fund. I don’t know the outcome to that but a huge thank you for trying. :)

Thank you to Sharon Fagan-Cox who organised a raffle at Stanstead – Is Jonathon whipping you all??

Cara, I thank you too for doing a 10K run for Robyn and I can’t wait for a time when you need to give her hair a trim too.

I know there are a few runs in the pipeline – please just keep reminding me on Robyn’s face book appeal page….

Many of you know that ITN came out to film Robyn. They were supposed to come and then the Haiti earth quake happened. It was felt that the article wouldn’t get the exposure it required and so was delayed. We were filmed in the hospital and at the Ronald McDonald house and those whom know me realise that I hate this. I get very stressed as I worry that Robyn is going to hear the wrong dialogue and that would crush me and frighten her. This footage may or may not be used in the future but if it is, I hope that some good comes out of it.

I started this blog a couple of weeks ago and I can’t seem to finish – it is boring me now!!

We are due back in hospital on the 17th March.

And if anyone has any ideas as to why some of my blog is coming out in different size, then I’m all ears!!

Love to everyone, Robyn and Lisa xxx