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.
Tuesday, 28 August 2012
As you can see from this photo taken from the the bridge across the Neckar river in the centre of Tübingen, it really is a beautiful town. It has a completely different feel to Griefswald, where Ryan had his immunotherapy treatment last year. Although the next time we go we wont see much of it for quite some time as we will be with Ryan in isolation in hospital but we will have plenty of opportunity once he is well again.
I have to admit to feeling quite anxious as I sat in the waiting room. I was eventually called in to see the nurse and it was immediately apparent blood was the first thing to be tested. I saw my name on a little pot containing 5 empty vials, I didnt see that all the other pots behind also had my name on! When the nurse picked up 4 little pots I laughed and said 'They aren't all for me are they?' 'I'm afraid they are' was her reply. Gareth said my face was a picture and he had great pleasure counting the vials and announcing that there were 23 that needed to be filled.
After that it was just routine tests; ultrasound, x-ray, lung function, urine tests and ECG. The hospital was very organised and there was very little waiting between tests. Then there was a short wait before a talk with the consultant in charge of the stem cell collection procedure. She talked us through what was required of me, the side effects and the risks involved. In short I will need to have injections twice a day for 5 days from the 13th - 17th September to force my body to produce stem cells, then on the 17th and 18th I will have one line inserted into each arm, the tubing will connect me to a cell separator machine and my blood will flow out of one arm, inside the tubing, to the machine where it will spin around at high speed. The spinning separates the different components of the blood into layers based on their weight. The stem cell layer will then be collected and the remaining blood will be returned via the other arm. This process takes approximately 5 hours, each day. Enough said about that then. I've borrowed some chick flicks to try and distract myself. We were shown the room where this will take place, there can collect from 4 patients at any one time and you have to remain in bed for the duration of the process but Yes you can be disconnected to use the bathroom - I asked!
My stem cells are then processed by a laboratory and will be given to Ryan fresh the following day.
We have also been in touch with the parents house where we will be staying and were pleased to here that they are expecting us. They didnt have a problem with us arriving late in the evening and will be leaving a key for us as we anticipate arriving between 10-11pm on the 3rd September as Ryan is due in hospital on the 4th.
Ryan told me yesterday that he is quite excited about going to Germany. When I asked why he said he wants to see his new hospital room, he can play the x-box as long as he likes, he gets his new x-box games and he will be 'duffing up' his baddie at the same time. That just about sums him up.
We havent pretended to him that is going to be easy, we have explained the treatment to him in a way that he can understand; he knows that his baddie is in for a big fight and he knows that is going to be hard on him, he will feel rubbish, have a sore mouth and tummy, will sleep much more than he wants to but although he hears all of this he only focuses on the positive things and that is what will get our beautiful boy through this.
Monday, 27 August 2012
Ryan continues to look and feel really well, he has been happy and active and has been enjoying all his early birthday presents. He has been to the skate board park with a couple friends and his new JD Bug scooter which he loves and has generally been having lots of hospital free time.
This weekend we took him to a fund raising day at the Coaver Club who have made Ryan their charity of the year. As the weather held off and all the events could take place outside there is less chance of Ryan catching an infection and so we decided to let this be his last day of mingling with so many people - he had a great time on the bouncy castles, penalty shoot out, dancing, and generally running around like a looney. His energy amazed people, those that knew him and those that met him for the first time, he really is an amazing boy and I really believe that his attitude helps him cope with everything that he has to endure.
On paper his counts have been stable, his platelets are hovering around the 20's, his HB is holding around 8 (borderline for a transfusion) and his neutrophils are wavering around 1 and so he has needed the odd shot of GCSF. He is having a count tomorrow to see if he actually needs blood this week and on Wednesday he has been invited to a day out courtesy of CLIC Sargent at an airfield and has the chance to fly in a small aircraft with one parent (Gareth) and apart from that we are having a much quieter week to ensure that he remains well before travelling to Germany.
Sunday, 19 August 2012
We are just waiting for the bone marrow results......
Wednesday, 15 August 2012
Thursday, 9 August 2012
This week though has been far from great. On Monday Ryan had bone marrow trephines (a core of bone) and aspiates (liquid) taken from both sides of his back under GA. While he was asleep the consultant also had to do nasal aspirates which involved washing out his nasal passages with saline. This was requested by germany to identify any potential infections prior to transplant. But there wasn't any mucus there, only a couple boogies apparently! Unfortunately, despite having gone to sleep quite happily, ryan woke very tearful, sobbing uncontrollably for quite a while. He didnt seem to recognise Gareth or I for what felt like ages. Apparently he had wriggled during the procedure so was given additional anaesthetic which may have caused him to feel so emotional. The bone marrow was packaged up and sent to Vienna again for analysis and this time it was received in good condition and is currently being processed.
Tuesday was a quiet day at home with his x-box. He was very sore and stiff and after talking with his consultant we gave him some morphine which helped a lot. But his friend Ben came over for the afternoon and stayed for tea which cheered him up lots.
Yesterday we had to go to Bristol Children's Hospital for the first part of an MIBG scan. We put numbing cream on both his hands so he was ready to have a cannula when he arrived, which he really wasnt looking forward to. There were lots of tears and it really hurt when it went it and unfortunately really hurt when the radioisotope dye was injected so a rubbish time for him. But his back is loads better and he showed us by performing a dance act early in the morning!
We spent the night at Sam's (the clic sargent house) and all the staff there were pleased to see him. This morning he had to lie still for about an hour for the scan and we are heading home now and await the results.
This weekend we have arranged his early birthday party which he is excited about so at least after such a pants week he has something fun to look forward to!