Well it’s been a very difficult couple of days for Robyn but let me begin by telling you that we have just finished singing  ‘A mouse lived in a windmill in Old Amsterdam’ , so be assured that she is okish at the moment.  (just wish the child would mime and leave the singing to me!)
Yesterday was awful.  A rotten day.  She had many side effects from the antibody and IL2 but the worst thing about the day was yet again,  her IV .  This was salvaged on a 2 occasions but finally had to be removed as it was causing too much pain and I think it had moved slightly rendering it useless.  The nursing care Robyn has received since she began treatment here has so far been excellent and I felt that this was really magnified yesterday.   Robyn’s condition changed by the half hour so there appeared to be someone constantly attending to her.    Her nurse yesterday, Laura, was fantastic and has built up a great relationship with Robyn.   She ‘gets’ Robyn’s Britishness and Robyn is learning to trust laura even when the situation is very traumatic.  All the staff who cared for Robyn yesterday were great but for me, thank goodness Laura was there….
So the IV team salvaged Robyn’s IV twice but it finally had to come out and after trying three times they didn’t manage to get a vein for another. (I think they may only be allowed 3 attempts).  I cannot tell you how dreadful this was.  Here we are, in a position where the therapy that Robyn is receiving is supposed to be causing all the problems and it’s the IV access that’s so dreadful!    So plan B was to get someone from the ER to come up – so that would be casualty or A&E to you and I ;-) the idea here was that they may manage to find a suitable vein as they have to put in cannulas very quickly in very demanding situations.   Plan C was to get someone from the neonatal baby unit who was used to finding tiny veins.  Well, plan B worked and with much drama and Robyn telling people exactly where to go  (those poor IV nurses…) it was done and she now has a new IV in her arm as oppose to her hand or wrist.   Somewhere during this day she also suffered from dreadful stomach pain, leg pain hand pain and  shoulder pain.  Plenty of morphine and hot packs really helped and this just left the vomiting, swollen eyes, hives and itchiness.  All of these side effects were really well managed but after the iv drama she had, quite rightly, had enough.  Last nights hives were the worst I have ever seen them and she was extremely itchy and agitated.
Robyn is weighed twice a day because another side effect that really needs observation is fluid retention.  Apart from the swollen eyes and cheeks this isn’t proving too much of a problem.
Unfortunately Robyn has hardly eaten since Thursday morning and when I think of all that hard work trying to put on a little weight I feel slightly disheartened.   On the other hand,  yes, I desperately wanted her to gain some weight but more importantly I also wanted her to have something to fall back during this demanding therapy.  I hope the little she had gained will give her this cushion.
Every night during this treatment I try to blog the happenings of the day.  Yesterday I was too upset and too tired to because of what had occurred.  Today has been demanding too with the same complaints as yesterday.  Robyn woke with very swollen eyes and think that I actually saw her right eye wander inwards towards her nose on a couple of occasions.   She has also had pain in her hand (bottom of thumbs), legs (knee area)  and inside her ears.  She has been sick once and was just thoroughly miserable for much of the time .  The hives haven’t made an appearance today so that was a blessing.  If I think of any other side effect I will add them tomorrow. 
I have tried to describe what is happening to Robyn in very basic ‘parents’ terms.  My aim is not to scare monger but to let people know what they may expect with this therapy.  Yes, so far, there have been times that it has been VERY hard on Robyn but having problems with her port or IV has proved worse!!  If you are considering this treatment for your child then they would have gone through high dose and transplant.  So far, for Robyn, this is nothing like that.  Thank goodness.   
Greg and Tommy spend much of the day with us.  Tommy has spent much of his time here sitting in a hospital room but he has been fantastic.  She even has half hours when she feels ok and they ‘link up’ ? on their DSs’   and in the middle of all this drama they still manage to have a spat!! 
Bernie arrived this afternoon and so this has cheered Robyn up.  Apparently, Greg says Bernie has brought hardly any clothes – her suitcase is full of chocolate.  Double deckers, cream eggs, mini eggs, crunchies, flakes…..   I love Bernie!
I’m tired now, cannot spell, need some ZZZZZZZZZZZZZZZZZZZ’s
Lisa& co    with lovexxx