Robyn Higgins

We had a great flight (if you don’t suffer from a flying phobia)  and we arrived in Newark on Monday 4th.  We were getting our bags from the over head lockers when I looked over and noticed 3 police officers.  For a moment I thought that I had not had our visas processed properly – Arrrrgggghhhh!  All the way here and they are going to deport us??   No, these very kind people came and ensured that we got off the plane and got through customs promptly.  They then took us to our hotel and then very kindly picked us up in the morning and took us to  Newark  Amtrak station where they safely put us on a train to Philadelphia.  (The reason  why we flew to Newark was that originally Robyn was supposed to go  Sloane kettering in New York on the 21st December- we could change the date of the flights but not the destination)

When we arrived at Penn station in Philadelphia (only an hour away from Newark) we were then picked up by Tom Hoban and a couple of his colleagues.  May I take this opportunity to thank Paul Ryan for introducing us to the wonderful Tom.  A HUGE thank you Tom for organising ALL of the above help.  It must have been a time consuming undertaking to co-ordinate the pick ups and drop offs.  Everyone was so very kind to us and it made a very stressful situation almost pleasant.

We arrived at the Ronald Mcdonald House in Philadelphia on Tuesday afternoon.  It is fantastic here, a stunning house with dark oak pannelling and ornate engraving everywhere.  Very beautiful.  We have an extremely large room with 2 double beds and one single and an suite bathroom.  It is very cosy.  You can make yourself meals whenever you want and every afternoon a large family (maybe from a local church) or a department from a local organisation come and cook a huge meal, buffet style.  It’s great that every night at 6pm somebody has taken the time to prepare, cook and lay out about three separate meal choices for so many families with poorly children.

So, that was our first two days.

On Wednesday 6th Jan at 8.30am Robyn had her first appointment with a Dr called Dr Maris.  He appeared really kind and asked many questions.  She then had port access, labs, urine test, height and weight, evaluation by anesthesia,  echocardiogram and  also met up with Dana the social worker and Diane the nurse practitioner- Wow!  she was really tired after all of this…

On Thursday 7th Robyn had a Bilateral bone marrow aspirates and biopsies under general anesthesia followed by an MIBG injection (for the MIBG scan the following day).  This took all day :(   On the plus side, I do not know what kind of  ’magic milk’ they gave her to put her to sleep but she woke up in a fairly happy, content mood and tucked into the the McDonalds she had placed an order for beforehand!   She usually wakes up and screams – yes,  screams for a full 30 mins!!  Can you imagine Robyn screaming and being so irrational?  It’s so out of character but that’s what these drugs do to some children……    Oh and she had the swine flu vaccine and the seasonal flu vaccine whilst she was asleep too.

On Friday 8th at 8am Robyn had an MIBG scan.  Once again she was perfect and lay completely still for an hour and fifteen minutes.    She then went immediately to have a CT scan of her chest, abdomen and pelvis.  Robyn is in a lot of discomfort from yesterdays bone marrow aspirates procedure,   all her pelvis is bruised and the little puncture sites are still weeping slightly.  After lunch Robyn had a Pulmonary FunctionTest.  This entailed much blowing and sucking of breathing tubes with a peg on the nose whilst sitting in a glass box!  Strange…

We all had the weekend off after such a busy week and a lovely lady called Jean invited us down to the skate rink at Penn’s landing where she teaches ice skating.  I told her that Robyn was unable to walk so skating wasn’t that great an idea and she told us they had little sledges.  We had a fantastic time and I cannot tell you how many times Tommy went fell head first into the side on the rink.  His nose was bleeding and he hit his face but you know Tommy, he wiped his nose with  his sleeve and off he went!

We have just received the last of the tests results to ascertain that Robyn is still in fact NOD (no evidence of disease) and all so far is good.  There are no NB cells detected but there are also not many healthy cells either.  It is felt that this is because she has not long finished radiotherapy.  Her bloods are ok so this is encouraging…..

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!

The total amount in the appeal fund now stands at approx. £200,000 and we are aware of many events still to come over the coming weeks!

The full events list can be found here.

Thank you so very much for your continued support for Robyn – just £100k to go..

x

There is now an online shop with over 1500 retailers inside and every purchase earns commission for the Robyn Higgins Appeal!

We would REALLY appreciate it if you could do as much of your shopping as possible through this – the more you spend, the more we raise to help Robyn.

Click below to visit the store (or here to see how it works):

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From now on, please see updates on the Just Giving page which you can get to by clicking here.

Thanks for your support – it is greatly appreciated xx

The current JustGiving total is £25,000. Please note, there are other ‘offline’ donations, including cheques and transfers into the account which are not included in the above.

Remember – the best way to donate is via our JustGiving page which means we can claim Gift Aid.

Thank you all so much for your support – it is very much appreciated, and we hope that with your help we can drive this toward the £300,000 we need for Robyn’s treatment, by the end of the year. x

Thank you for your patience in waiting for updates!

Now we have a JustGiving page (which you can visit by clicking here), we are in the process of adding up the Paypal, Bank Transfer and Cheque totals so we can let you know what the running total is.

As we mention on the donations page, ideally all donations will now be via JustGiving, as the appeal receives ‘Gift Aid‘ for every donation. This means that every eligible donation receives an extra 25% in tax relief which goes straight to Robyn. For example, a £30 donation gives Robyn an extra £8.46!

Thanks for your continued support and we will post a Facebook update (and an update on this page), when this total is known.

If you are not already on the Facebook Group, please click here to join. If you don’t already have a Facebook account, click here to set one up.

Thanks again from all of us x