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.

Friday, 15 June 2012

The meeting...


Ryan thoroughly enjoyed himself at the circus and sleeping over at his cousin James’ house.  He was understandably a bit tearful at bedtime but was perfectly happy in the morning and snuck into his cousin’s bed to wake him up!  Here is James and the cheeky chappy.

Our trip to Tuebingen was straightforward enough I guess, the only direct flight we could get was from Heathrow (or even worse Stanstead).  Unfortunately there were 2 full flights checking in on just 2 desks and it was a bit chaotic to say the least and so despite arriving with plenty of time to spare by the time we checked in there was only enough time to make a quick dash through to the departure gates.  Then, as people were boarding, an announcement was made asking for 2 volunteers with hand luggage only to fly out the following day as the flight was over booked??!!  Madness really but I am assuming someone volunteered and took the 250 euros compensation and over night stay in a 5 star hotel….

Our hotel was near the airport, in an industrial estate actually and being a Sunday the restaurant had closed 3 minutes prior to our arrival, perfect.  The helpful receptionist did give us directions to an Indian take-away which also did Pizza – so that was tea sorted!

The next morning we arrived at the hospital and, in the way that we had become accustomed for our treatment in Greifswald, we first had to complete registration and then we had to pay for our consultation and then we got to meet with the consultant.  It is during registration that you wished you knew more languages, especially German!  Dr Lang was a very pleasant gentleman but made us no promises of a wonder cure.  He talked us through the treatment, the intended purpose and the risks involved.  It is difficult to describe how you feel during such a meeting.  You almost have to detach yourself from the situation and not think that you are talking about what could happen to your precious child.  The risks, and there are many, include heart, liver and kidney problems, rejection of the donor stem cells and graft versus host disease to name but a few.  But the greatest risk is of infection during the period where Ryan’s bone marrow has been wiped out completely and the period where the new stem cells are grafting in his body, which can take approximately 2 weeks before we begin to see signs of engraftment.  All of these risks can be fatal. 

During this time Ryan will be kept in isolation in the transplant ward of the hospital.  There is an air filter fitted in each room and the ward can only be accessed through a changing room where you must remove your outdoor clothes and shoes and put on clean ones. He will be on numerous anti biotics, anti-virals and anti-fungals all to try and prevent any infection.  Ryan will have a restricted diet for 100 days so that there is no risk of infection through the food that he eats.  Although during this time he will have mucusitus, and so eating will not initially be a concern, it will be managing his pain while we wait for the new cells to graft and repair his body.  He will not be forced to have an ng tube and he will be supported by TPN (IV Nutrition) both of which was our request.  Ryan had an ng tube for 9 months between age 2 and 3 and as he remembers this he has no desire to have one again, so when he can eat he does eat, with a lot of encouragement from me and Gareth! 

Strangely the hospital do not have a policy of having a parent sleep in hospital with the child, we had been warned of this by another family who had already made the trip out, and so we asked about this and made it clear that we would not be leaving Ryan at any point and so would sleep in a chair if necessary.  This did not seem to be a problem and we were told we could sleep at the hospital with Ryan, thank goodness!  After the meeting Gareth and I had blood taken which will be tested to see who  will be Ryan’s donor.  A sample of Ryan’s blood will be sent to the hospital and then we will find out the results.  We also discovered that the stem cells will be taken from us peripherally, which involves being connected to a harvesting machine for many hours with IV lines in both arms – something else to look forward to!  This will be during the period when Ryan is receiving high dose chemotherapy prior to his transplant.  We will also have to have GCSF injections twice a day for 5 days prior to the 2 day procedure! Little price to pay though although I will probably pass out based on my track record!  

Luckily the actual transplant for Ryan is nothing more than a blood transfusion into his central line, usually several small bags of stem cells which look just like blood depending on the number of cells harvested, it does not involve surgery as the name suggests.  Overall the trip was a success and although we both felt rather subdued after the meeting our minds are still made up.  The only problem being that the hospital does not have a bed available in the transplant ward until the 12th August.  This will mean that Ryan will need to continue to have chemotherapy until that time.  This is quite a worry at the moment as his counts are still not recovering from the 2nd cycle and he is now 3 weeks late starting the 3rd cycle.  This is not unexpected in view of the extensive amount of treatment he has had since relapsing in November 2010 and is a sign of how very weak his bone marrow has become.

Ryan will have another count on Monday and we have everything crossed that his counts are sufficient to start.  The type of chemotherapy has been changed to one that is not so toxic to the bone marrow to see if Ryan is able to tolerate this better.

3 comments:

  1. Praying that all will go safely and smoothly - and 100% successfully - for Ryan's treatment. Thinking of you all from the East of England.

    Nigel xxx

    ReplyDelete
  2. Pretty much the same as Connie and I were told.....your right, it does sound scary! however as you say, what are the options! Think positive, our motto. Anyway, looks like we will be there just before you, be good to have company I'm sure

    Chris Riddle

    ReplyDelete