Joshua’s Story

In December of last year, Joshua had a urine infection and our local hospital arranged for a routine ultrasound of his kidneys to check all was well. It was during this ultrasound scan that our world was shattered when a tumour was found on his adrenal gland and he was transferred to Great Ormond Street Hospital. It was the week before Christmas. We had an agonising week’s wait, before receiving the devastating news on Christmas Eve that it was cancer – neuroblastoma. We had been looking forward to our very first Christmas as a family for months, and instead of being the happy occasion a baby’s first Christmas should be, we were left numb and shell-shocked at the news that our baby had cancer. As most first time mothers do, I worried about cot death and meningitis but I can honestly say that cancer never even crossed my mind. How could a baby have cancer?

In the weeks that followed we made many trips to Great Ormond Street Hospital for various scans and tests to determine what stage the cancer was. Although we had hoped for the best, we expected the worst, but nothing could have prepared us for the news that Joshua’s consultant broke to us. The cancer had spread all over his little body and it was stage 4. His prognosis was “unfavourable”. Joshua underwent bone marrow aspirates and trephines and had a Hickman line inserted into his chest.

After two biopsies, we were eventually given the third blow – the cancer was MYC-N amplified – the most aggressive and difficult to treat.

Joshua started his induction chemotherapy on Tuesday 27th January. I remember sobbing as the nurses administered the chemo drugs through Joshua’s central line and the start of this awful journey began. Joshua had chemo every 10 days for 70 days (8 cycles). His hair fell out and he was sick with every cycle but he always managed to raise a smile.

The last cycle of induction chemo finished in April and we geared ourselves up for another worrying time as Joshua had his reassessment scans and tests. We were so encouraged when Joshua’s results came back – all 11 areas of bone disease had cleared up and his tumour had shrunk from 8cm down to 3cm. But our optimism was short lived when Joshua hit serious problems with the next part of his treatment, his stem cell harvest. Blood tests showed that his stem cells hadn’t mobilised from his bone marrow as expected so this procedure had to be cancelled.

During high dose chemo, Joshua will receive exactly that – the highest dose of chemo possible and this will completely wipe out his bone marrow and immune system. In order to help him to recover, his stem cells are collected prior to this and are frozen. They are transfused back into him after the high dose in the hope that they will repopulate his bone marrow and go on to mature into healthy blood products.

It was decided that Joshua should go straight into surgery on 13th May and they would attempt another harvest afterwards. Surgery was the next major hurdle we had to get over and we were also told that due to a number of infections, it had been decided to remove Joshua’s Hickman line and put in a second one at a later date.

After being told your child has cancer and the odds are stacked against him, we didn’t think it could get any worse, but the day Joshua had surgery will stay in our minds forever. It was horrific, particularly saying good-bye to him in the anaesthetic room, wondering if it would be for the last time. The wait was awful. Had they managed to take the entire tumour out? Could they save his kidney? Had there been any complications? We were told surgery would take between 5-6 hours so when we were called to recovery just over 3 hours later we thought they had been unsuccessful in removing the tumour. However, we were given such fantastic news! Joshua’s surgeon told us that the procedure had been very straight forward and he had managed to take the entire tumour out and save his kidney. On close examination, Joshua’s bowels, liver and intestines looked clear. This really was the best outcome possible from surgery and news soon followed that the tumour was found to be completely dead.

Seeing Joshua after surgery was heartbreaking, we’d never seen him so ill. But day by day he got stronger and stronger and amazingly, just 6 days after major surgery, he was allowed home. We enjoyed a rare week at home together before we were next back at GOSH for the second attempt at harvesting his stem cells. In order to harvest the stem cells, Joshua had to have a special catheter inserted into his femoral artery under general anaesthetic, as well as another Hickman line fitted and then the following day they tried to harvest his stem cells. We hoped this would be successful as his high dose chemo depended on it but unfortunately it didn’t go to plan. They only managed to get 200,000 stem cells during his harvest and nowhere near the 3 million required as a minimum.

We were sent home. The following day Joshua celebrated his 1st birthday and although we put on a brave face for him, the worry was always there. It’s a terrible thing to say, but I spent the whole day wondering if this was the last birthday he’d celebrate. Joshua should have been having high dose chemo by now but instead we didn’t even have enough stem cells. Knowing how aggressive neuroblastoma is and how quickly it can return was constantly in our minds. Could all that Joshua had been through and conquered have been for nothing?

A very anxious few weeks went by until it was decided by his team at GOSH that they would try and harvest his stem cells again, but directly from his bone marrow this time, instead of from his blood stream. This isn’t ideal as it’s a procedure that has to be done in theatre under a general anaesthetic but we had no choice – he had to start high dose chemo as soon as possible. Luckily this third attempt was successful and added with his previous harvest he had 2.9 million stem cells which his team at GOSH felt was just enough – high dose chemo really couldn’t be delayed any longer and there just was not enough time for a fourth attempt.

This is as far as Joshua’s journey has taken him. He is due to start high dose chemo on Tuesday 23rd June. He has had further Hickman line problems so has to have his second one removed and yet another one inserted (most children have one line that sees them through the whole treatment). We have been told that Joshua is expected to be in hospital a minimum of 6 weeks but with the stem cells being from his bone marrow and therefore not as mature, this is more likely to be 10 weeks. We know high dose is going to be very tough on Joshua and there are so many risks related with such toxic treatment, but we hope and pray he battles through this as he has done with everything else to date.

After high dose chemotherapy, Joshua will have 3 weeks of radiotherapy at University College Hospital. This will be done every day and will mean that Joshua has to have a general anaesthetic each time.

We don’t know what the future holds for our little boy; we can only pray that he responds well to the treatment offered in this country and that we are successful in raising enough funds to take him abroad for further treatment.

Please check Joshua’s update page for the latest news.