Ryan's story

Ryan was diagnosed with Stage 4 High Risk Neuroblastoma N-MYC amplified in July 2008. He was out of treatment for just over a year when in November 2010 our lives were again turned upside down when we discovered the disease had returned in his bones and bone marrow. After a year of treatment re-staging scans in November 2011 showed that he had again achieved remission.

However just 3 months later, in February 2012, end of treatment scans gave us the devastating news that the disease has returned, this time with a tumour near his spine. In March Ryan started 4 weeks of radiotherapy followed by chemotherapy which is on-going. Re-staging scans in May and August showed no evidence of disease. On the 4th September 2012 Ryan received treatment in Tubingen for a haplo-identical stem cell transplant. He is a happy, active boy who is now enjoying life to the full.

Thursday, 4 October 2012

Sorry it's a long one ........

The past couple days have been very mixed; Ryan continues to do well in that his mouth and throat are healing and his morphine is being reduced, his counts are good, his CRP has started to reduce but his fevers are persisting and when they come Ryan is a difference boy, shivering, tired and feels very unwell. We took him to the parents house the day before yesterday and he had a bit of a kick about and went on his scooter a bit but then asked to go inside and sure enough his fever was returning.

The doctors believed the fevers were either engraftment syndrome but lasting longer than normal, an auto immune response or possibly an infection.

So to ensure they know what they are dealing with the consultant in charge of Ryan requested a CT scan to rule out any infection in his lungs, this was carried out on Tuesday. It was quite a stressful day.

Yesterday morning we were told the good news that the CT scan was clear and that they had done many tests on blood, urine and stool samples to rule out infection of any kind. All tests were negative, this was a huge relief.

And so the doctor said they felt sure that Ryan fevers were caused by prolonged engraftment syndrome, his body reacting to the new cells. The plan was to give Ryan a steroid to suppress his response they felt sure this would stop the fevers.

Then came the news that as he was doing so well in all other respects, and they had a new admission coming in, Ryan would be moved to the oncology ward.....later that day, yesterday. We asked if he would be in his own room and this was confirmed.

We started packing up the room and had almost finished when the doctor came back to say that unfortunately there was no longer a single room and that Ryan would have to share with another child. I think we felt so shocked that we initially accepted this news, as we understand the pressures on doctor and nurses and knew it wasn't the doctors fault. He assured us the child had no infections and was having chemotherapy.

Gareth and I went to see the room without Ryan to see how much room we had for our things. The room had been lived in by the other family for a while and so things were everywhere, after all they must have only just been told too. The realisation hit us that we were moving from a room where we had to strip ryan from his outdoor clothes as soon as he returned to his room to exposing him to 3 other people (child and parents) and their belongings. Gareth took some of our things back to the parents house and whilst he was away from the hospital had time to think about what we were being asked to do.

I felt very uncomfortable but felt we had no choice. Gareth decided we did have a choice, we would simply refuse to move unless it was to a single room. And so after many lengthy conversations, with nurses and doctors who were called in from home, ryan was transferred to his own room in the oncology ward, just for the night. In the morning he would have to move into the room with the other child. We accepted this as in the day Ryan can wear his 'industrial' looking mask that we were told he has to wear everywhere that he is in the company of others, with the exception of close family and friends that know how important it is to be well.

And so today we are sharing a room with Marco and his mum, Ryan is wearing his mask and being really good about it. There is no single room tonight so part of the negotiating that Gareth did was to ensure that whatever needed to happen to get Ryan back to the parents house tonight happened.

The conditions are Ryan must take the majority of drugs orally, must demonstrate he is eating albeit small amounts and must drink a minimum of 600ml as some of the medications are toxic to the kidneys. He is also withdrawing from morphine which can sometimes be a slow process and depends how the individual feels.

In addition his blood results had to be good. Luckily they were better than good - his platelets are in the normal range for the first time in over a year! His WBC is stable at 2400, his HB has increased but most importantly his CRP ( infection marker) has dropped meaning that 2 of the 4 iv antibiotics can stop.

And so the plan is that we can leave the hospital tonight at 9pm and Ryan can sleep with us at the parents house, mask free, and return to hospital tomorrow for 8am. We will have to wake him during the night to give him medicines but he understands and doesnt mind.

This time tomorrow we may be one step closer to being discharged to the parents house.......

No comments:

Post a Comment