Last day of this round of antibodies and possibly back ‘home’ tomorrow! Robyn seems to tolerate this particular round of treatment better every morning – it is towards the middle and end of the infusion that she may have a few problems. Her temperature is very up and down and this sometimes happens before she vomits. She also had pain in her tummy at around three o’clock and it is at this time that she gets a bit cranky and demands dvd’s and a sleep. Pauline and I were so grateful when she slept because she had been bossing us around and grumping at us!! Later in the evening Robyn got a rash on her face and neck and then started scratch her legs, torso and face. She was really upset and agitated but as soon as the nurse gave her some Benedryl this settled very quickly. One day is merging into another here now and I really have to think about what has happened during the course of the day. I am so relieved that this round is complete. I have been so very worried about the pain aspect of the treatment but look at what she has been through so far. She still has a fantastic sense of humour and I sometimes think I have Carly from I- Carly as my daughter!! When she sees me tucking a cake or a biscuit she looks at me and says “Mummy, you really don’t need that do you?” as she shakes her head, cocks it to the side and looks at me with pity.
Tom visited today and brought Robyn a lovely teddy-bear (where am I going to put them all??!!) and some DVD’s as ours don’t work over here. He also brought me in some Cadburys chocolate as I was complaining about the chocolate that is on offer here. I told him that I needed some ‘real’ chocolate. Now I have about 5 big bars…. yum…. You’d think I really enjoyed my chocolate but I can usually take it or leave it. It’s when you KNOW you can’t get Cadburys it ends up a must have!
Hopefully we will be able to go home tomorrow. We have been stuck in this room since Wednesday night. Robyn has only got out of the bed to be weighed x2 a day and to use the commode. It will be so wonderful for her not to be attached to so many wires and this week I am going to spoil my special little girl rotten.
What I am typing at the moment is actually quite boring. I think, in this situation, boring is good
I’m missing my boys xxx
Lots of love, Lisaxxx
© 2009 Robyn Higgins Appeal | Site management by Jonathan MacDonald Enterprises
The updates are heartwarming Lisa – nothing you type is boring!
You manage to put humour into a very sad story and we are all very grateful to get regular updates – lots of love to you all xxxx
Hi Lisa
So glad that Robyn seems to be coping with everything at the moment and delighted that you’ll get ‘home’! You’re on our minds always. Thank you for taking the time to keep us all up to date at a time when you must be so busy. Take care and kisses and hugs to you all xxxxxx
Wow well done girls, 1 session done, that seems amazing, and it sounds like she’s coping with all this just as she has done with everything that’s been thrown at her so far, what a star..
We’re all thinking about you and asking about you and praying for you all the bloomin’ time!! You’re a credit to yourselves, and inspirational to us all
Lots of love from the MacDonald clan, esp Fungus head xx
We miss you too… will be there in a couple of weeks. XX
Hello girls,
Well done both of you! How many sessions will Robyn have?
I am glad she is tolerating the treatment well so far as I heard about all the side effect at the Neuroblastoma conference at the New Scotland Yard in November, do you remember? That’s where we met.
Keep going girls and please do not hesitate to contact me if you need anything from the UK.
Londonstana@hotmail.com
Love Jessie and Stana xxx
PS: Jessie saw her orthopeadic doctor on friday and her scoliosis is stable so they want to see us 6 monthly rather than 4 monthly so I guess that’s good news. Her next MRI for her tumour is in March (again six monthly long term follow up now)
fantastic to get an up-date Robyn (and Tommy) are a credit to you and Greg. great to see she’s coping as well as can be expected, but as always keeping that sense of humour. love each days update and look forward to seeing you both soon. xx
Hi Lisa, I’m so pleased to hear that the treatment has been relatively pain-free. I know that must be a great relief for you. Sophie also gets a rash with the anti-bodies – it’s like a switch exactly 5 hrs into the infusion each day this rash on her face appears! Rashes I can deal with, pain not! Good luck and I look forward to your updates! Anne McGuire x.
Hi Lisa
Its so great to hear how you are both doing. Gen has been doing her best to update me. Look forward to more updates here. Love to you all, you are always in our prayers. Only 9 days left of purple hair….will have to think of something else!
Helen x
Great that she’s doing well.
My best wishes to you all.
Paul Wardell