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.

Wednesday, 4 April 2012

Such a long day...

Ryan got back into the routine of radiotherapy with no problem. He is now on the 2nd phase of treatment which means only 2 beams and not 4 so the treatment is even quicker and he can only listen to half of his selected song - usually Scooter belting out at full volume!

We went to the park yesterday and had tea before coming into hospital. We had good and bad news - the good news (as it turned out) was that ward 34 was full but they found us a bed in Ward 37 (Renal) and it was in a cubicle! The bad news was that the special drug that Ryan was being given to mobilise his stem cells into his blood stream needed to be given at 3am and was by injection into his leg. We only learned this on arrival as had previously been told it was IV. What made it worse is that earlier in the day Ryan had asked if he needed any more injections and we had reassured him No, so he was also cross with us thinking we had lied. He said how stupid it is to wake children up at night and and do horrible things to them and why did everything he needed to have done to him have to be so horrible (meaning the vas cath) There is not much you can say to this other than we wished it was happening to us instead but this doesn't really help as he never wishes the same.

Our room wasn't quite ready when we arrived so we spent some time in the playroom and managed to get Ryan asleep by 8pm. We had just been having a conversation about the fact I was concerned that Ryan's platelets were not high enough for surgery and Gareth was pointing out i wasn't a doctor so should stop stressing when a doctor turned up and said they wanted a blood count as they were concerned his platelets weren't high enough for surgery.....

So at 9 ish Ryan was woken up for a blood count! And was examined by a doctor to ensure he was fit for theatre. Later that evening we were told that after radiotherapy at 8am Ryan would have platelets then go to theatre at 8.30am. That was the plan, there was not a minute to spare in fact we had to find an extra ten minutes from somewhere as radiotherapy takes ten minutes and platelets take half hour!

At 2am Gareth who was the choosen one to sleep in, put numbing cream on Ryan's leg covered in cling film - which we adopted in Germany as suggested by Corinna (thank you!) Ryan stirred but went straight back to sleep. At 3am the nurse came in with the injection and Ryan decided that Gareth should give it and the nurse should cover his eyes. He was a bit anxious but managed it without tears, what a star. He was awake about an hour, asked to play the wii - with a grin on his face as he knew the answer was no - then fell back to sleep again.

At 5.45 the nurse came in again to take blood for a stem cell count - although this is the normal procedure we had been told that Ryan would not need this. In fact as we had been told this and knew isnt was unusual we had checked this information directly with his consultant ( that's just what we are like) he confirmed that a count was not required as Ryan was having a special drug to mobilise his stem cells. But Gareth didn't see the point in arguing and Ryan was woken again for a blood count ....

I arrived at 7.15am, the same time that the anaesthetist was in the room explaining the procedure to Gareth. And so Ryan woke up and the first thing he said was what a lovely sleep he had had?!

At 7.30 we suggested that Ryan be given cover (anti-histamine) before radiotherapy so it in his system by the time the platelets were connected. This is what usually happens in Exeter. By the time they found his drug chart it was 7.45, by the time they prepared and checked the drug it was 8.00.

Today was always going to be stressfully, full stop. The importance of a successful harvest is stressful in itself without all the other complications and a surgical procedure.

As the nurse was about to come into our room ( I was loitering in the corridor looking out for her) the phone rang and the blood service wanted to know Ryan's count, as it had been done last night and not this morning they wanted another one! Now!

We got to radiotherapy by 8.10, literally running down the corridors. We looked for the staff who are usually waiting in the control room by the machine and they weren't there. We wandered to the other machine and found all the nurses and 2 engineers. Both machines had failed their daily checks, had faults and were not working! They told us they hoped that at least one would be working in the next 5 minutes! 5 minutes that we already didn't have!! We tried not to show our stress and frustration as this would not help Ryan and quietly explained the situation to the nurses. We all cheered when the engineer declared the machine ok at 8.20!!

At 8.30 we were running back up the corridors to ward 37 for platelets and bumped into the anaesthetist who was going to insert the vas cath, she was lovely and said not to panic, they would be waiting as soon as he was ready.

The ward had the platelets ready when we got back and connected him almost immediately. But then they wanted him to go straight to theatre, whilst having the platelets. Ryan didn't like this idea but it seemed like that's what would be happening. Although it seemed obvious we asked the nurse if theatre staff would flush off the platelets when they were finished and they said yes, of course. (if they are left in the line the line will block)

Ryan got anxious when he was about to go to sleep but the lady doing the anaesthetic had an American accent so Gareth said that was where Travis was from and Ryan asked her if she knew of him. She didn't so as he went to sleep he was telling her all about him.

So we waited in the ward until we were told that Ryan had come around. He was very upset, his leg hurt and he kept saying he didn't want the thing in his leg. We had expected this but had not expected him to still be connected to the platelets. The machine had been turned off but nothing else had been done! The platelets must have finished at least 20 minutes earlier and would be sitting in his line clotting our first thoughts were that his line would almost certainly be blocked. A worry we definitely didn't need at this time and so before Ryan had even been transferred from the stretcher into his bed he was flushed off the platelets and amazingly his line was fine!

He was then carefully moved from the stretcher into bed and once he was settled in a comfortable position, he calmed down. His leg ached and so he was given paracetamol and started playing on the x-box. He had already declared that today was a day that he would be in charge and that he would be eating when HE wanted and playing the x-box and wii all day. He had specifically requested to be visited by his cousin James and our friend Darren as they were both great candidates for a day of computer games. As James wasn't feeling 100% he didn't come but my sister came for a couple hours in the morning and Darren for a couple hours in the afternoon.

The harvest started just before 11am but within half an hour the machine started alarming due to pressures - the flow of blood out of Ryan's body wasn't sufficient. The nurse had to use a syringe to draw off blood and found a clot had formed in the vas cath. She started the machine again but within 10 minutes the same thing happened. Again she had to disconnect the blood supply from Ryan to the machine and use a syringe to withdraw blood. This time a bigger clot came out of the line. This solved the problem and the harvest recommenced but within 20 minutes the same thing happened. This time the clot was too big to get out of the bung attached to the line that she had to remove the bung! However removing the bung and connecting Ryan's line directly to the line into the machine seemed to solve the problem and for the rest of the harvest there were no further problems.

While Ryan was in theatre the nurse had explained to us that the machine is primed with blood so that as Ryan's blood was extracted the blood in the machine was returned to him. As the blood passed through the machine it was mixed with an anticoagulant. The side effects of the anticoagulant were low levels of calcium in the blood which could cause tingling in the lips, nose and/or finger tips, stomach ache and vomiting. She told us that should Ryan experience any of these symptoms she would give him calcium to counteract the side effects. I asked if it were not possible to give the calcium beforehand to prevent symptoms but this is not normally how it's done apparently. She said she would explain the side effects to Ryan and ask him to let her know if he experienced any of them. Once he had settled back into bed she explained all of this too him - he said ' I know, why don't you give me the calcium now so I don't get any of those feelings?' I promised I hadn't primed him to say that!! The nurse obviously liked him and agreed to call her superiors to get permission to give him a preventative dose - and that is what she did. So Ryan felt reasonably well throughout the whole experience. His pulse and temperature were slightly raised but that can sometimes be as a result of a surgical procedure and it didnt escalate.

By 3.30 the final harvest was done and Ryan was disconnected from the machine. Ryan then did his first wee of the day which was difficult as he couldn't bend at the hip because of the siting of the vas cath.

We expected to hear late evening whether or not sufficient cells had been collected and whether the harvest would continue into a second day but by 5.20pm our consultant came to tell us that they had only collected 0.14 (the minimum for a successful harvest was 2.0) He said he did not feel that a second day would achieve the required difference and so had decided to abandon the harvest. This is obviously very disappointing news. However he was going to arrange for a bone marrow harvest (which is where the stem cells are collected directly from the bone marrow in the pelvis by needle aspiration) He hoped to arrange this next week.

This meant that the vascular catheter could be removed. This is done without anaesthetic. The tube was held in Ryan's leg by 2 large stitches and a large plaster. We knew this was not going to be a pleasant experience for Ryan and we hoped to get it done before it was too close to bedtime.

It was just before 7 when the nurses came to remove it, this isn't because they forgot or were putting it off, this is simply how long things take in hospital when nurses have several children to look after. They were fantastic, really reassuring and patient. I kept right out the way on the other side of the room as I hate the sight of blood. Gareth was sat next to him and the 2 nurses persuaded Ryan to let them first remove the plaster. Then they had to remove the stitches and then pull out approx 6 inches of tube from his artery! They had to apply pressure to his groin for about 5 minutes until the site stopped bleeding. There were obviously lots of tears while all this happened, and distressed shouting and pleas to stop. I can't help but feel upset when this kind of thing is happening, I don't let Ryan see any tears but it's hard to hear your child frightened and in pain without feeling upset. In his usual style though Ryan calmed down quickly and watched Tom and Jerry with the nurse until she could remove the pressure pad. He then gave her a picture he had drawn earlier and thanked her for looking after him, bless him, he's such a star.

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