MAD About Harry - APPEAL
Harry Banks is a ten-year-old bubbly, smiley, very cheeky, but completely adorable boy.
In late 2014 we were given the devastating news that Harry had Stage 4 Neuroblastoma, a very rare and aggressive children’s cancer. After bravely enduring two years of intensive chemotherapy, continuous investigations, major surgery, high dose chemotherapy, radiotherapy, immunotherapy and more, Harry had two and a half years in remission and rung the bell to mark the end of his treatment, although we knew he would continue to be monitored. Devastatingly, once again our world has been turned upside down – in November of 2018 we were given the distressing news that he has had a neuroblastoma relapse to the CNS (central nervous system) and had to have an emergency operation to remove a tumour from his brain. Neuroblastoma has one of the lowest survival rates of all childhood cancers, and a CNS relapse is so rare – it’s the worst. Harry desperately needs your help in any way you can.
'Mad About Harry' was set up in 2014 to raise funds for Harry in the event he would need a ground-breaking trial abroad. If the fund was not going to be needed then once he was no longer at risk, the fund would be donated to help other children suffering from this horrible condition. Mad About Harry now aims to raise £500,000 for a ground-breaking trial at Memorial Sloane Kettering in New York or Barcelona. The NHS has been fabulous with the care and treatment they have been able to provide for Harry so far, but he is now in unknown NHS waters. This privately funded treatment is the only lifeline available. Please help us raise £500,000 by March in any way you can, thank you for your help it means so much to us. x A HUGE thank you from all Harry’s family and friends who really really don’t want a world where children go through the journey that Harry is treading, it means so much to us and to them.
Please also see our auction - all proceeds going to Harry. http://madaboutharryauction.org/
Last week Harry had more chemotherapy in Oxford every day ‘to keep it at bay’ before we go away. I can’t tell you how amazing he was. Harry has in the past had real problems taking medicines, tablets, dealing with it all, which causes incredible stress and anxiety on a daily basis, and often many times a day for both Harry and me but this week something clicked, he was absolutely brilliant! OK so we have a reward chart (which helps but costs me!) but we have had that for some time, so it was more than that and I am so proud of him! He even made it into school for the last lesson on three days, despite being sick from the chemo bless him, but it was his decision and thankfully he has not felt too unwell at all this week. There have been so many battles and upsets over the last 4 and a half years, this week has been a huge deal for me!
We have ongoing discussions with Harry’s consultant, Barcelona and MSKCC but no firm decision as yet. We have however been told that the 8H9/Omburtamab is definitely available in Barcelona now and Dr Mora has already had his first patient there, however Harry is number 4 on a waitlist so there is an unexpected delay if we go. We have also learned that Harry will need to have a high dose chemotherapy, as part of the protocol of the trial, before we travel, which of course is worrying. Russ and I will finally get the online consultation with Dr Kramer at MSKCC that we have been waiting for and then we will make plans. If it is not detrimental to Harry to wait a few more weeks then to go to Barcelona is I think our preference, and we are happy now we have spoken in detail with Dr Mora, but ultimately we HAVE to do the right thing for Harry.
It continues to overwhelm us how many events have taken place in support of Harry and we can’t thank everyone enough for the kind words, the support, the generosity and goodwill from every one of you, near and far. Harry will get the treatment he needs and hopefully we can help others too. The MAH Trust will ensure the funds are used in the correct and best way, and thank you to Simon Stone from Kingsley David Solicitors too, for your help with this.
As always thank you for reading and caring so much, I will try to keep you all updated when I know more.
Harry was looking forward to a week of ‘normality’ with no scans, tests or hospital visits this week and time to be in school with his friends. Sadly this was short-lived. Harry and I had to come into MK hospital last night as he fell unwell with a high fever quite suddenly. He is on antibiotics although the cause has not been identified yet so they will keep him in for now. The highs and lows can come about so fast, it frightens me. Everything frightens me.
I think that only those that have been in this situation can possibly understand the burden. The enormity of it all is overwhelming - we sacrifice our privacy and dignity to ensure that the fundraising could be a success, we open our hearts to the world and tell everyone how we are feeling, the good and the bad moments are all documented, whilst all the time we are trying our hardest to look after our sick child and to give them the best care that we can, the time and attention that they deserve and need, along with the siblings too. Work has to be put on hold, the stress that goes with that, for now and the future. You can’t plan anything outside of the hospital plan as things can change in an hour or less, and you go when they say to go, holidays are only a dream and cannot be planned yet either. Above all the worst part for me is the constant stress and anxiety of knowing what your child is going through and how terribly unfair it is. It broke my heart when Harry said as he cried to me this week that to get cancer once was really hard but to have it twice and to go through it all again is just not fair! And it isn’t! Oscar always knows what to do in a situation like this - he came into Harry’s room and made us both smile.
So this last week I have also been getting closer to working out Harry’s treatment plan with Russ and all the professionals/hospitals involved. The relevant hospitals have all the information they need and most of our questions have now been answered, which has not been easy! We have though finally heard that Barcelona is in fact going to be recruiting patients on to the 8H9/Omburtamab trial in time for Harry, which is to us really good news as now we have the choice. Thanks to each and every one of you who have helped take the financial burden away, for that we are truly grateful. We are still waiting for a full consultation with MSK, and then Russ and I will make a decision, and it will probably all have to happen fairly quickly after that. I still have to take one step at a time, for me it's the only way to deal with the enormity of it all.
Thank you for continuing to support Mad About Harry and for all your wonderful comments.
Harry was determined though to be well enough to meet Dele Alli yesterday when we got home, after the day he had had, Harry’s strength was ridiculous! Dele kindly went out of his way to come all the way to our house and meet Harry, Oscar and a few of their friends. That was a real highlight for the boys and I am so grateful Dele made the time for Harry and Oscar, despite us having cancelled on him a couple of weeks ago when Harry had flu!
We are half way through radiotherapy now and are getting closer to a plan for the trial (Omburtamab/8H9) Harry will have to have further tests and an operation to place an Ommaya port (tube that goes into his CNS) in readiness for the treatment abroad. We think this will likely start early April but the hospital is yet to be confirmed.
The fundraising has continued everywhere and every event seems to be a huge success which shows how much Harry’s gorgeous smile and sad story has touched each and every one of you! We cannot thank you enough for everything you do. Our hope is that we can help others as well as Harry, by raising awareness of Neuroblastoma too, so thank you for maintaining the incredible support, it truly means the world xx
Your support has resulted in Nina and Russ being able to focus on the most important thing now which is looking after Harry and preparing him for the difficult treatment ahead.
We will continue with all planned events and keep the campaign live, as all monies raised will support any further treatment Harry may need or help other children and the fight against Neuroblastoma.
All funds raised have been placed in a trust to be used for Harry’s current and future treatment and associated costs. At a point where no further treatment is required, or can reasonably be expected, the trustees and the family will agree how best to apportion the funds as set out on the website: neuroblastoma research; and children and their families that are affected by this cruel disease.
Thank you for all your messages of support and for making a difference to Harry’s tomorrow.
Hey guys can you please share my story I am trying to keep a roof & food underneath my two siblings head, we just got kicked out. Search | Unexpected Moving Expenses Maria Padilla | on GoFundMe. Please we would be extremely grateful, if you guys would share our story. We’re getting kicked out by our cousin on February 1st & they are in danger of getting taken by cps if I can’t provide a home...
The children and staff at Ducklings preschool on Springfield have been coming into preschool wearing their PJ's this week. Our wonderful families have been giving in donations all week. Together we have raised £63.
Faith is a great cure and there is plenty here. Good luck little fella: we're all with you.