Yes, I know, I’m way behind!  So sorry but things are always so busy here.   So here’s an update:  Robyn had a new port put in the right side of her chest so now she has 2!  This made the last round of antibodies easier as there wasn’t any needles and searches for the best place to put a cannula – it was however, very bruised and sore so moving around was very painful for a few days.

 

The antibodies were yet again tolerated very well.  Robyn’s doctor felt that she should have Fentanyl as oppose to Morphine as her pain medication because of her previous problems with hallucinations.  The Fentanyl appeared to cover most of the pain caused by the antibodies but it did make Robyn extremely argumentative, moody and emotional.  Either that or she was getting really fed up with me twenty-four seven…..

 

 Robyn had the usual side effects that she suffers from – rash over her face and neck causing a fair amount of itching (but not Hives as she got with the IL2 and the antibody), general feeling of being unwell, absolutely no appetite, agitation, a slight retention of water,  and this time pain in her throat.  She said she felt as though there was something stuck in her throat and so she used the PCA button a lot.  When she was finished with the antibodies she then had ‘fast poo’ which kept us all on our toes!

 

Although she tolerated the above well it was also quite hard going.  Even though the side effects to the antibodies subside very soon after the infusion finishes, It did take her a few days to recover.  She was absolutely exhausted in the days following dishcharge and still found it difficult to both eat and drink.  Consequently she ended back in the day hospital for some fluids and this helped her on her way.  She was like a different child within an hour, asking for a sandwich and talking too much – Ah!  Robyn again! 

 

Her dose of appetite stimulant has been doubled as she had lost weight again but she absolutely refuses to discuss an NG tube.  If I could get her to agree to one,  just for a month, I am sure that I could pour so much goodness down into her tummy that even if she didn’t gain weight she would still be better nourished. 

 

Her physical therapy is coming along well too.  She has had another cast put on her leg for just under a week and yet again Robyn was moving around well.  Robyn’s problem with her right leg began in September when she had surgery to remove the tumour.   If the leg and foot was touched, she would suffer really bad neuropathic pain.  She then had her stem cell transplant (another 6 weeks in bed, very poorly at the Royal Marsden and in intensive care at St Georges) and this made the problem even worse.  She found her leg was more comfortable with her knee up towards her chest and that together with ‘foot drop’ caused much of where we are now.  As time went by Robyn couldn’t straighten her leg AND put her foot at a 90% angle – she could do one or the other though.  Robyn and her Physical Therapist, Abbey, work so hard to get her mobilised and ready to play with her friends again but every time she comes in for a course of antibodies she ends up going backwards as she is in bed for a week or two, unwell.  It is so demoralising for Robyn, Abbey and me!  Anyhow, now Robyn has a new ‘cast’ that she can wear, if she can tolerate it, during antibody therapy.  She can take it off if she gets Hives or is too unwell to wear it, so this is great.

 

Robyn’s next job is to put her heel on the floor and put her weight through it.  I think that when she can master this then her walk will neaten up alot because at the moment she is still very jerky so as to maintain her balance.

 

Robyn celebrated her 8th birthday whilst in hospital and she had plenty of visitors and the all important, Robyn’s favourite –  MATT CADABARA!!  Robyn loves Matt Cadabara (he is a student who comes to entertain the children in The Ronald McDonald House) and it was a fantastic birthday surprise.  Zoe, Stella’s big sister came in and they really enjoyed the magic tricks, and the balloon’s that Matt can twist into any animal you can think of.  That was a very memorable couple of hours and if you had taken my blood pressure during that time you may have had to hospitalise me but that’s another story that I’ll tell you in a couple of months ;-)

 

It was also Delores birthday on the 19th and both herself and Tom came to see Robyn and watch the magic show.  They brought cake, pressies, sweeties and birthday helium balloons.  We had a lovely evening (when my stress levels dropped!) and once again they helped make a difficult situation enjoyable.  Thank you to you bothxxx

 

I have got lots of big, massive, heartfelt  ”Thanking yous’ to do now….
To Emily, Joy, Annie and Susan – Thank you for that enormous beautifully decorated birthday cookie.  Yum!     
Jennifer, Thank you for the bright yellow, tasteful nail polish – she loves it! (I’m coming around to it…) and also thank you to the members of the Peace Lutheran church for the beautiful card that lots and lots of people so very kindly signed. 
Auntie Dee, Tara and Laura – miss you so much.  The tracksuit was lovely and it looks great on her but then, as we all know,  Robyn can wear a bin liner and still look good!
Maureen,  Thank you for the lovely basket of ‘Penn cuddlys’ .  She loves cuddly toys and these ones in particular were fantastic.  Thank you too for the $ and $ worth of dining vouchers!  What a wonderful pressie, you really shouldn’t have but we appreciate them so much…
Ellen and Sue.  You have always thought of Robyn and sent her little presents since she was diagnosed.  Even with your own cross to bear you continue to think of her.  I think of  you both often and Auntie Mel keeps us updated.   Look forward to seeing you soon – we’ll get Mel to take us out to lunch ;-)
Thank you also to the staff at the Ronald McDonald house who arranged a beautiful birthday cake.  Also thanks for putting up with us for the last few months.  Your kindness knows no boundaries and again, we appreciate everything.
Bernie,  Thank you for being you and thanks for the continuous supply of Chocolate.  Thank you for the presents, I cannot remember what they were because, as always,  there was too much!  I do remember a beautiful silver ‘R’ necklace though.  See you soonxxx
Amanda, My other long suffering  friend brought those little plastic pots of  spaghetti and beans – oh and tea bags!  Ever sensible Amanda but still managed to squeeze in some chocolate!  She LOVED her yellow t-shirt ! See you very soon tooxxx
To everyone who sent over cards and presents, you really do not know what it meant this year.  We have celebrated Nanny’s, mine and Robyn’s birthday in hospital and its pants actually. 

 

 
So,  Amanda went, Dad turned up, Mel turned up, Dad left, Mel then left but not before My two boys arrived.  I have found this month to be quite hard going.  There have been at least 10 deaths from children with Neuroblastoma and it is so frightening it is unbearable.  Little Sophie Atay lost her battle with NB.  This is the little girl who was on ITN raising funds to go to The States back at the end of the summer.  Sophie was too poorly to travel in the end and I think her passing hit many of the parents very hard.  Also I found out that 3 of Robyn’s little friends from The Marsden have recently lost their battle with cancer.  How can this be?  What world is this, that our family are now living in?

 

Tommy continues to amaze me and I am in awe of just how he copes with what life has thrown at him over the last year.  It tears him apart getting on that plane to go home and Greg deals with Tommy and resettling him admirably.  It would have crushed me leaving my family in another continent for over a month at a time at his age.  He is well aware of the seriousness of this situation and again he may well be a little ‘rough and tumble’ at times but he is actually far more emotionally mature than most boys of his age.  I am the proudest mother of  the most wonderful son.
See you all very soon I hope,  Lisa, Greg, Tommy and Robynxxxx