Ossie boys fund

Our Journey  

Ossie was first diagnosed in July 2013 with a rare childhood cancer called Neuroblastoma which is a cancer of the nervous system: he was 7 years old at the time. Neuroblastoma children are diagnosed before the age of five but the majority being under 1, so Ossie's case is very rare.

Ossie had led a very active and healthy life, he played with an extensive football activities program, being scouted for Arsenal and Watford football clubs alongside playing for his beloved local football team, Everett Rovers. He had played with Everett Rovers since he was four years old he was doing five days a week football up until falling ill on a family holiday. During this holiday Ossie required an ultrasound and is when they discovered a massive mass encasing a large part of his abdomen. He was sent for immediate X-rays and an emergency MRI and his parents were then told the devastating news, he had a childhood cancer. Ossie was transferred to the care of Great Ormond Street hospital (GOSH) where his full diagnosis was given.

After a number of other tests, unfortunately, Ossie was diagnosed with stage 3 intermediate risk Neuroblastoma, which was a huge solid tumour encasing lots of parts of his abdomen. His parents were told that he was in a better position because it was not within his bone marrow and he was able to start an intensive chemotherapy protocol straight away.

Ossie underwent six, five day, very hard chemotherapy sessions over the next six months. This ended up being extremely hard for Ossie and made him very poorly. He was allergic to one of the chemotherapy medicines which made things a little harder as well. After the 6 rounds of the five different type of chemotherapy's, his disease was reassessed and unfortunately there was only a limited amount of shrinkage, but he was still put forward to have the tumour removed.

Thankfully on the 8th January 2014, Ossie had a full removal surgery over a 10-hour operation, and they managed to save his right kidney. He recovered from surgery very well and was put on six-month course of oral chemotherapy. Ossie remained 'No Evidence of Disease' (NED) whilst on this medicine

In July 2014, when he had finished the last course, he had reassessment scans  and devastatingly to his parents, they were told that the cancer had returned and there was another tumour. He immediately had another four-hour surgery to remove the solid tumour and underwent fifteen radiotherapy sessions over three weeks in October at University College London Hospital. The radiation had to have time to finish working as it carries on working in the body for months after. Scans were booked for March 2015.

Before the scans took place, the "Rays Of Sunshine Charity" sent Ossie and his family to Florida to visit the theme parks. This was a well deserved holiday, after all, they had been through and they cannot thank this charity enough for it.

In March 2015 Ossie and his parents were again devastated to find out that he had relapsed for the second time in seven months. He was immediately re-staged as stage 4 and started on another gruelling chemotherapy course, having to have hours of Intravenous hydration as the new chemotherapy he had been put on were so damaging to other parts of the body. In May 2015 Ossie was reassessed and his parents were told that the two chemotherapy treatments that he had been on, the two medicines that had made him so very poorly were not working and he now had three tumours.

The doctors changed the chemotherapy treatment and he was really only well for a couple of days out of each cycle, he ended up having seven rounds of this harrowing medicine before it was stopped. Ossie received more scans, which showed he had progressed to five tumours. All chemotherapy was stopped. Nothing seemed to be working to control the disease.

Ossie was put forward to have MIBG high dose radiation at UCLH (An MIBG scan is used to look for uncontrolled or abnormal cell growth in the body. It works by injecting a substance called an isotope into a child’s veins. The MIBG scan is named after the chemical ‘iodine-131-metaiodobenzylguanidine’ or MIBG for short) and a stem cell transplant to recover. Before he could start this next treatment he underwent yet another intensive treatment to try and control the disease as he had now progressed to eight tumours. He was unable to see any of his brothers, sisters, friends and normal visitors. Even reduced contact with his parents was required as he was so radioactive. Because he had reduced contact with his parents and nurses one of his godmothers, Nikki, signed a disclaimer to say that she knew she would be in danger to be near him, but she wanted to help care for him as well as his mother.

Finally after scans six weeks later his parents had some good news, no new tumours were visible. Although only slight shrinkage on one tumour, there was certainly less activity within the others. Ossie was then to further his treatment to high dose chemotherapy with another stem cell transplant back at Great Ormond Street which he has been receiving since the middle of December, which unfortunately meant Christmas away from home. This high dose Chemotherapy was by far the worst he has had to suffer, He spent Christmas in a very bad way with his mother by his side and they saw the New Year in together. At present Ossie's is at home recovering and waiting for news on another trial Chemo.

 If the NHS does not offer any more treatment then we plan to get Ossie to another country that can provide a new trial for his condition. 

 Updated 30/01/16

 Ossie went back to Great Ormond Street Hospital (GOSH) after having a high dose of Chemotherapy to have a series of MRI's MIBG scans, CT scan's and bone marrow tests. After a few days of waiting, we were told that his disease had stabilised. After this treatment, there were no new tumours found and some of the eight tumours had become slightly smaller and some were less aggressive. This has meant that he could go onto a trial here in the UK which would be funded by Cancer Research UK. The trial consists of five cycles of treatment, each being three weeks on treatment and two weeks off treatment, and then he will repeat another six-month course of treatment. 

 Ossie arrived at GOSH on the 15th of February to start an IL2 GD2 antibodies treatment. This has again been an extremely hard treatment for Ossie to bare. Firstly he had to have daily injections of the IL2 which he had huge reactions to and it made him very poorly. He was meant to have ten doses of this, but after the 6th dose, the doctors decided that his reactions were too severe and so they stopped them. He started the long-term infusion of antibodies on day 7 and as a result, Ossie had a huge amount of pain in his back and legs and had to be put on IV morphine and ketamine alongside other strong pain killers which still did not relieve his pain. 

Unfortunately, Ossie has had to be fitted with an NG tube as he was not eating and he had completely lost his appetite which has required him to have his medicines through and enable him to be fed.

Ossie has just finish cycle 1 of his immunotherapy and has been sent home with oral chemotherapy, ten tablets a day until he is due back on the 21st March for Cycle 2.

Updated 09/03/16

Ossie's immunotherapy trial has been cancelled and will be put onto another Chemotherapy trial, we are in the process of an official/detailed write up on this. 

Updated 15th June 2016

  Since April after completing three rounds of the aggressive il2 immunotherapy trial Ossie had a series of scans. Unfortunately he had a mixed response and some tumours had got bigger, some had become less active but more importantly, there was a new tumour situated in his liver. Ossie was put forward for some trials at the Royal Marsden hospital but sadly all tests from a biopsy of tumours meant he didn't meet eligibility of the trial. Ossie was given another aggressive chemotherapy in the hope that he could be given another stem cell harvest for another round of aggressive radiation therapy  (all of his previous saved cells had been used in the aggressive treatment in November and December) that would hopefully 'blast' the tumours as it was a trial that he hadn't had. Ossie got extremely poorly from this round of chemo and ended up getting shingles which meant more time in hospital. After this round, gosh were unable to collect stem cells as the shingles had affected his immune system.
Ossie was then was put forward to collect T cells in a harvest to hopefully go on a new trial being brought to GOSH, which was extremely successful and GOSH were able to collect plenty of cells. The cells went to the lab to be mutated and would be available in August. 

 Ossie's family were extremely grateful to be given the opportunity to access this treatment here in this country. Ossie would be patient 1 in Europe having phase2 carTcells this was all thanks to GOSH and cancer research UK.  Ossie and his family waited for cells to be ready and Ossie had another round of chemo at GOSH. Before Ossie started the carTcells trial he was scanned again and after another two rounds of chemotherapy there was progression in his tumours. He started the trial on the 11th of August and tolerated it quite well. He has again been scanned this September and devastatingly the carTcells hasn't worked in fact we have more progression, particularly in the liver tumour. 

Ossie is currently on an oral chemotherapy to hopefully buy some time before he starts another trial either at gosh, the Royal Marsden (which aren't available yet) or UCLH or America all of which is being looked into by our consultant Professor Anderson  at GOSH.

At the moment Ossie is quite well enjoying spending time at home, some school time and even playing his beloved football (when he's not able to play he bugs his coaches and managers with his fantastic football theory mind!!) He's having great fun gradually working through his bucket wish list  and being with his friends and family.
Updated 9th October 2016

On 16th October 2016 Ossie was awarded man of the match after a match with his Everett Rovers . Ossie had been very ill this week after his most recent chemotherapy but he was determined to play and even scored an amazing goal!   

10/02/17
Update on Ossie, he recently started his MIBG Radiation at UCLH. They have just stopped this trial as he is too poorly to carry on with the second round.

Unfortunately the care that he received was not good and he ended up getting an extremely bad infection which has had a massive complications. Ossie has been transferred to his favourite ward at Great Ormond's Street Hospital and today he will have his stem cell transplant and hopefully that will pull him back from the MIBG treatment.

Ossie was made up when he finally got to Great Ormond's Street and can finally see his brother and sisters who have had to stay away due to the high Radiation at UCLH.

The nurses put on a warm welcome and he was greeted with a room full of gifts.

We as a committee will carry on raising funds for Ossie's trials, we are also setting up another campaign to cheer him up. We have his bucket list with some expensive items we needs fund for. Please donate to your choosen cause, either his bucket list or his trials abroad. Well wishes from people are flooding our facebook page, every body wants Ossie to beat this.

Sadly Ossie passed away on the 4th May 2017.