Update: August 2009 – January 2010
Firstly, let me apologise for such a long gap between updates. Joshua’s very hectic treatment schedule, together with arranging flights and accommodation as well as actively organising fundraising events, has meant that I’ve not been able to keep this group as up to date as I would have liked. As a result – this is a very long update but there is a lot to tell you!
Joshua had re-staging scans and tests at the end of August to determine if his cancer was in remission and after an agonising week of waiting, we were told the fantastic news that Joshua was indeed in remission. However, despite the good news, Joshua still had more treatment to come and on the 9th of September Joshua started his 3 weeks of radiotherapy at University College Hospital, London.
The radiotherapy itself only took about 2 minutes each day but because Joshua had to be anaesthetised beforehand and then recover, it ended up being a daily 3 hour event! We were worried sick how Joshua would cope with having to have a general anaesthetic everyday for 3 whole weeks, particularly as he was still recovering from the high dose chemotherapy, but he amazed us. His appetite was probably the best it’s ever been and despite being nil by mouth for half the day due to the anaesthetic, he always managed to make up for it!
Radiotherapy affects the haemogloben in the blood and it is very important to keep the Hb levels high as some research suggests that the higher the Hb, the more affective the radiotherapy is. Because of this, Joshua had his bloods checked 3 times a week. We got to the third week and just as we thought things were going well we had a phone call from one of the doctors at 11.30 at night asking us to bring Joshua straight in. His platelets had crashed dramatically and they were very concerned. He had a transfusion that night but each day they kept crashing from over 100 to below 5 and he needed platelet transfusions on a daily basis. We were told that this could be a relapse with disease in his bone marrow. We were terrified.
We were sent to GOSH to see Joshua’s consultant and were kept there all day whilst she conferred with other consultants. After much debate, they decided that to have such a high level of disease in his bone marrow to cause his platelets to be dropping so drastically would be causing other symptoms such as pain in his limbs and he was absolutely fine. They felt that it was most likely due to his bone marrow still being fragile after transplant and that the radiotherapy had just upset things. We were still concerned but knew that Joshua was due to be having bone marrow taken the following week so we would know for sure.
It was when Joshua started his radiotherapy that we very suddenly found ourselves in the incredible position of being able to make the arrangements to take Joshua to The Memorial Sloan Kettering Cancer Centre (MSKCC) in New York for the antibody therapy but we had very little time to do this - 20 days to be precise! Everything happened so quickly that I was madly trying to arrange flights, accommodation and liaise with the doctors in New York as well as his consultant at GOSH and still take Joshua to London every day for his radiotherapy! In a matter of days we had arranged what we thought was impossible.
Joshua’s last radiotherapy session was on Monday 28th September and we flew the very next day. We arrived in New York late Tuesday night and went straight to the Ronald McDonald House where we would be staying for 3 weeks
We had no time for jet lag – Joshua had a very busy schedule. On Wednesday 30th September we met with Joshua’s consultant at MSKCC who examined him and explained what was going to happen in the next 3 weeks that we were there. The following few days Joshua had a series of scans and tests to make sure he was still in remission. After receiving the all clear, Joshua was able to start the antibody protocol immediately; however, this was two weeks over their cut-off period of 90 days post stem cell transplant. Despite this, Joshua’s consultant felt it would still be of benefit to him and could increase his chances of survival.
Before Joshua could begin the antibody therapy, he had to start a drug called GMCSF which is an injection given by us on a daily basis. GMCSF works by stimulating the bone marrow to over-produce a certain type of white blood cell which is needed in order for the antibody to be as effective as possible. This is started on the Wednesday before the antibodies and is carried on throughout the antibody week until the cycle is finished.
On Monday 12th October, Joshua started his first round of 3F8 monoclonal antibodies. Both Steve and I were very apprehensive. We were warned by the doctors and nurses that Joshua would be in immense pain, as this is a side affect of the treatment. Other parents at the Ronald McDonald House had told us that nothing can prepare you for it – and they were right. It was heartbreaking to see Joshua thrashing around and screaming in such pain. I felt like such an awful mother knowing we were doing this through choice but we had to keep telling ourselves that this could make all the difference to his survival. As awful as it sounds – pain is a good sign as it means the antibodies are working so although you don’t want your child in pain, it is reassuring.
He had the antibodies for 5 straight days. The pain would last for about 10 minutes then he’d be in a deep sleep for about 5-7 hours afterwards. Although deeply distressing at the time, Joshua would wake from his deep sleep and be up and about playing and be fine the next morning where the whole process would start again. Joshua tolerated the long week very well and we were given the all clear to fly home on Saturday 17th October.
A week after we got home I had to arrange for a blood sample to be sent to New York to be tested to determine Joshua’s HAMA status. HAMA stands for Human Anti Mouse Antibody and because the antibody is made from the white blood cells of mice, the human body can reject this and make its own antibodies against it. Ideally we want Joshua to have at least 6 - 8 cycles of antibodies for the best possible chance of beating Neuroblastoma but if he develops a HAMA then he cannot have another cycle until it has gone.
Joshua’s blood tested negative which was great news – he was able to have another cycle of 3F8 and we flew back to New York on 7th November for the second cycle of treatment. I felt better prepared this time as I knew what to expect but things were very different. Joshua had no pain at all – his heart rate didn’t even go above 120 bpm, nothing like his racing heart rate previously. The doctors warned us that it was highly likely he’d HAMA’d (HAMA positive) and blood results a few weeks later confirmed this.
Joshua had a repeat blood sample sent just after Christmas to see if his HAMA had come down and he was now negative but unfortunately he is still testing positive. This isn’t doing him any harm – it just means that the antibody treatment will no longer work whilst he remains positive. This brings us to the current day and I am now in the process of making the necessary arrangements to go back to New York in the next two weeks. There is a treatment used on children that test HAMA positive before they’ve received the desired number of 3F8 cycles and it involves a different antibody drug given over the course of 2 weeks together, with a chemotherapy drug. This kills certain white blood cells that are responsible for blocking the 3F8 antibody but is only affective in 60% of cases. We are crossing everything that Joshua will be in this 60% and his HAMA status goes back to negative so he can carry on with the antibodies and receive his third cycle.
On the 16th of November Joshua started 6 months of oral chemotherapy. He has 2 weeks on followed by a 2 week break. This is a very nasty drug and side effects include very dry/sore skin, sickness, tiredness and liver problems so Joshua is monitored carefully and has all day blood tests at GOSH every cycle as well as his normal blood test every week by the community nurses. This treatment is to mop up any microscopic cells left in his body.
Joshua remains very well in himself and took his first steps just two days ago! He has put on some weight which his consultant is pleased with.
Despite starting the 3F8 antibody therapy, we are still actively fundraising - more so than ever now as the money raised so far covers this basic treatment, but not the additional treatment which Joshua now requires. Also, in just a matter of weeks, two of Joshua’s friends have relapsed with this awful disease and we have to face the awful reality that this may happen at any time to Joshua. If this were to happen, time is critical and we would have to be able to act instantly and take Joshua out to the US for treatment.
We still have a great deal of money to raise and with spiraling costs and bills from New York, we have to work even harder to achieve this. Please get in touch if you have a fundraising idea, an event or are able to help in any way at all.
Again, we are so grateful for your continued support. Thanks for reading this,
Amy (Joshua’s mum)
Update: June – August 2009
Joshua went back into GOSH on 23rd June. He had his third Hickman line fitted in theatre during the morning and once they were happy that he’d recovered from his anesthetic, he then started his high dose chemo in the afternoon. He had 4 daily infusions of the most toxic chemotherapy drugs pumped into his body for 6 straight days and within hours of the first infusion, Joshua started to suffer the effects. Because the chemo had to be toxic enough to kill such an aggressive type of cancer, it also killed the mucus cells lining his mouth and throat, all the way down to his digestive system and to his poor little bottom. In the days that followed, he vomited thick mucus which at times built up so much that he’d have trouble bringing it up. His bottom became blistered and bled and to top it all off he caught the bug c difficile which caused horrendous diarrhoea.
On the 30th June Joshua had his stem cells that had previously been taken, transplanted back into him. This was done over 4 days and after about 7 days, his bone marrow began to work again. He went from needing platelet and blood transfusions twice a day, to every day then every other day.
From the start, Joshua was weighed and had the girth of his tummy measured twice a day. The high dose can cause a liver disease called Veno Occlusive Disease (VOD) and he was monitored closely for this. This complication is usually expected within 1-3 weeks of high dose chemo so by the 4th week we thought Joshua was well on the road to recovery. How very wrong we were. On the 19th of July (my birthday) Joshua started to show signs of VOD. Within a matter of hours his belly had swelled so much and his heart rate and blood pressure were all over the place. The crash team were called and once he was stabilised the doctors explained he was very ill.
VOD is swelling and clotting of the blood vessels within the liver. Because of the clotting, fluid couldn’t be processed and so built up in his tummy causing it to swell. In the early hours of the following morning the crash team were called again and at this point we were warned that Joshua would probably be in ICU by the end of the week. We tried to prepare ourselves but seeing him so ill was truly awful. He’d been through so much already but had never been anywhere near that ill. His fluid intake was strictly monitored and after the most worrying week imaginable, Joshua started to show signs of improvement – he thankfully never made it to ICU.
After 3 more weeks of care, Joshua was finally allowed home on 13th August. A whole 7 weeks and 2 days had passed and at times, we never thought we’d bring him home again. We are now faced with dreaded scans and tests before the next chapter in Joshua’s treatment begins - a gruelling 3 weeks of radiotherapy.
We will keep you updated.