Finally we are here and without wanting to sound patronising you can give yourselves an enormous pat on the back for enabling this to happen.  What has happened to Robyn and our family over the last 8 months is too awful to put into words but along the way we have been overwhelmed by the support and love of our family, friends and complete strangers.   The MASSIVE amount of money that has been raised in three short months is testimony to how much people care about Robyn and the truly unimaginable situation we find ourselves in.

We are well aware that people have been shaking buckets outside every consenting supermarket in the freezing cold while they could have been doing their Christmas shopping,  cycling 150+ miles across every borough in the Met, running 5K dressed as Santa, climbing mountains (I kid you not!),  getting up at the crack of dawn to freeze at car boot sales, taking part in The grim and other triathlons, discos, children’s disco/parties,  dinner and dances, Rugby events, holding auctions, swimming ‘The Channel’ ,  making and selling cakes, dyeing / shaving hair, balloon races, dressing up/down?? (CCC) and this is to name but a few activities that have taken place over the last 3 months.  Be warned,  I will  name them all eventually!!

Almost every school in Frimley,  Ruislip and surrounding areas have raised money in some way for Robyn and we thank every child, teacher and parent for supporting our family and helping in this way. A huge thanks to Diane Lyons for writing to all the schools local to Frimley,  this raised an enormous amount of money.

To the Staff , children and parents of The Sacred Heart,  we thank you.  You not only raised awareness and a huge amount of funds but the messages of support send via email, facebook, text, phonecall and good old fashioned letter were so very much appreciated.  The beautiful ‘get well’ cards and presents (in the early, dark days at St Georges) and most recently the Christmas card really cheered us.  I still cannot believe how much was raised by SKIPPING!!  Amazing…   THANK YOU!

To the staff, parents and children of St Augustines, again, an enormous amount donating, fundraising, collecting.  The support and kindness that has been shown to ALL of our family has been overwhelming.  We are so very grateful.  On top of the above I appreciate that there was more than likely some very difficult questions to answer from some very inquisitive children.  For this I do not know what to say, I just hope you found the ‘right’ words…..     A big thanks to Mrs Bray who always found time to visit Robyn and put a smile on her face and she would always bring a bundle of letters, pictures and cards that 2B ( now 3A ! )had so thoughtfully and beautifully written and drawn for Robyn. Also thank you to Mrs Smith and Miss Allen for their support  and kindness over the last 8 months.  This situation has been hard on everyone….

I know that I am a little late in writing updates or blogs but I really do not know how people manage- I often see people have started some kind of blog soon after diagnosis!  I am not ashamed to say that I couldn’t function let alone blog!!  We got away with it for ages because many people use facebook and particularly for fundraising, Robyn’s facebook appeal page had constant activity and words of encouragement.  I acknowledge that not everyone uses facebook and so now I can actually let my lovely Dad know what is happening in our world!!

As for the fundraising,  well I assume that it going well!  I will get in touch with 2Simple (The Charity who support children and families with Neuroblastoma) now that the Christmas/New Year period and Robyn’s tests are over.  I have never agreed with a ‘Barometre’ showing people how much has been raised so far because It was such a huge, unrealistic amount that, in the beginning,  appeared so unachievable.  I remember looking at the JustGiving page and there was £7,000.  People had worked so hard to raise that and yet in the grand scheme of things, it was a drop in the ocean!  It was felt that it could actually discourage donations and be off putting as we were so far from the amount of money needed for us to pay for the Antibody Therapy that people just wouldn’t bother donating at all!

We will still continue to fund raise but not in the mad frantic way that has been necessary over the past 3 months.   Antibody therapy appears to be  improving prognosis by at least 20%  but nothing will give us any guarantees that Robyn will not relapse and there are no relapse protocols in this country aimed at curing a relapsed child.  We were also told this when Robyn was diagnosed – just as bad ( we thought )than the diagnosis…     At the moment for any child who relapses,   America holds the most promise.  This is not to say that there is a secret cure in The States – there are kids succumbing to NB there too but relapse is routinely treated.  Sadly for an international patient this comes at a massive fiancial cost-  Far more than the Antibody Therapy.  If your child should relapse,  then there would be no time at all for fund raising – you have to go and get him/her treated straight away.

So,  my little Princess has been through a biopsy that included putting in a hickman line, a urinary catheter,  bone marrow  aspirates and trephines.  She then endured 9 rounds of chemo given every 10 days (wow!),  stem cell harvest,  9 hours of surgery to remove the tumour,  feeding tube put up Robyn’s nose and pushed down into her stomach (NG tube),  high dose chemo (the clue is in the name) to wipe out her bone marrow,  stem cell transplant to then help recover her bone marrow,  5 days in intensive care with 4 infections that weren’t responding to antibiotics,  eventual central line removal as this was deemed the reason for the infection,  portacath insertion (to replace the infected hickman line – she found this prcedure very painful) and 14 sessions of radiotherapy.    I must also mention the numerous nights spent in Frimley Park Hospital with infections caused because of lowered immunity,  GCSF – the drug that would help boost her blood counts enough for her to hopefully recover for the next round of chemo  being given for 6 days on the trot following chemo administered by the community nurses (half hour infusions),  the 3 MIBG scans (these scans pick up NB cells in the body) where Robyn would have to lay ’statue still’  for an hour and a quarter at a time,  CT scans,  2 more bone marrow aspirates carried out under general anesthetic, constant blood being taken, platelets and blood transfusions and a truly enormous amount of medication.  PHEW!!     I’m sure I’ve missed loads as I have  a lot of blog catch-up to do but as I read back through what I have just typed, it is shocking!!  Every child with Neuroblastoma goes through this.  I was once told by a doctor that there is no other cancer protocol that is as aggressive as the one for Neuroblastoma .

Today Robyn is still recovering from her high dose and stem cell transplant - treatment she endured three month ago,  she is still unable to walk without crutches due to the bruised nerves serving her right leg  (the tumour was attached to this nerve,  and is very weak and extremely anorexic.  We are  proud of our child and we have the utmost respect for her.  She should have been at school doing cart-wheels on the trim trail and trying to improve on yesterdays mental maths score.  This is not right.

So here we are in Philadelphia, not New York.  Why?  Because Greg and I felt that these antibodies would be more suitable for Robyn than the antibodies being offered in MSKCC in New York.  The down side of this is that Robyn and I will more than likely have to remain in the US for the duration of the treatment (as oppose to being able to commute should we have gone to Sloane Kettering).  I could be wrong and I will find out in due course but I think that Robyn may be the first UK child to have these particular antibodies.

There is a very new phase 1 Antibody trial with two arms now being offered in the UK.  Robyn was eligible for this trial and should we have accepted she would have been randomised to either the antibody alone or the antibody and a drug called IL2.  This is NOT the same as the phase 3 antibody trial (ch14:18) that Robyn will hopefully be receiving in Philadelphia.  All children throughout the States receiving these antibodies receive a drug called GMCSF, IL2  and the antibodies themselves -  it is for this reason that we are here but that’s another story for another day!