Robyn has been admitted for her second round of antibodies today and what a busy day it had been.  She will have four continuous 24 hour infusions of IL2 and that will finish at about 3pm on Monday.  We will then be allowed to go back to the Ronald Mcdonald House until Wednesday, all being well.

 

Robyn has had no side effects from this infusion of meds – apart from being sick a few times but this could have been because of eating too much as oppose to a side effect of the IL2 – Yes, Robyn has her appetite back!  (with a little help for a tiny amount of appetite stimulant) At times she tends to over do it though…  She is also doing very well with her stretching and did in fact manage to ‘walk’ a couple of paces yesterday and today.  I may not sound as excited as you’d think I’d be about this but I need to make sure that she is not literally hopping  along as this isn’t walking as she should be.  She needs to get her heel right down on the floor in order for her to walk as she should.   I will now tell you that I did have tears in my eyes to see her moving without my help or her crutches across the room - It has been over 5 months since my warrior princess has walked – 5 months  too long.

 

Today we had a very stressful half an hour as Robyn’s portacath isn’t behaving as it should and it started to leak (The IL2 was being infused into the port).  The nurse had to de-access the port and they couldn’t put any magic cream on the area to numb it again as there would have been a risk of introducing infection.  Robyn was so upset and was screaming at the nurses to put some cream on first.  She is not stupid,  she knew this was going to hurt and i am not going to lie to her and tell her otherwise or she will never trust me again.  So the nurses had to do what they had to do and it did hurt but it was over and done with in no time.  We were both exhausted after,  It must be the come down after the adrenaline!  It is at time like this when I get very upset and angry.  Why her? Why Neuroblastoma? And why is the bloody port not funtioning?

 

Robyn has been talking about school a fair amount this week,  she misses school, she misses her friends and you can clearly tell when you speak to Robyn that she has spent far to long trapped in a room with me.  She is still a very innocent 7 year old but she has a sense of humour WAY beyond her years.  She has me in fits, she is quite wicked!  She does sing me beautiful songs that she learnt in French class with Mrs Bray though.  I really do enjoy this but have you ever heard Robyn sing?  Oooh it’s painful!

 

We are off ‘home’ (RMH) hopefully tomorrow so we can spend some time with Greg and Tommy before Robyn has to be admitted again (Wed) and the boys go home :-(

 

So, for those reading this blog because they are planning for their little  (or big!) person to have these antibodies – this week has been ok .  Next week is the one I am very concerned about as I have been warned that the  combination of IL2 and antibody can be quite hard on the child – but saying that we have met a beautiful little 5 year old girlie called Brooke who is having that exact combination at the moment and I keep walking past her door expecting to see her really poorly but she is sitting up watching TV and chatting!  So there you have it, every child is different…..    John and Vikki, I know you are reading this with baited breath!!  Hope you enjoyed your night out by the way, let those who judge cope with a child with this sort of cancer and see if they do things any differently than you do.  You are all doing so well :-)

 

We are so looking forward to Bernie coming on Saturday,  I may as well just go and stand in a corner on my own for the duration of her stay as Binnie will have no time for me!  We really do miss Nanny Pauline though but we had her for one extra day as her flight cancelled because of the snow blizzard.  Now, that’s another story, I have never seen anything like it!  What a huge amount of snow!  but it gets cleared so quickly and life appears to carry on functioning as soon as possible – no complaints about salt shortages here ;-)

 

A little Star Wars fan who really needs the force to be with him at the moment is Ashley who relapsed just before Christmas.  He is in hospital at the moment and his family are trying to sort out treatment options for him.  Please pray for this little man and for Amelia and Sophie who are very poorly at the moment because of this disease.  And of course please, please pray for my Binnie, my special long, gangly, perfect giraffe of a baby girl.

 

love to you all, 
Lisa and Robyn :-)    xxxxxx