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, 7 September 2012

Start of treatment and rules of isolation

Our first full day in hospital (wednesday) was uneventful and consisted mostly of getting settled into the room in isolation which will be Ryan's home for the next 8-12? weeks.  It is going to be quite difficult for me to update the blog regularly in this period as Ryan is obviously my priority but I am going to try and give a summary of how things are going.  Today though Ryan is well and so I can elaborate a bit!


The first day of treatment (Day -12) started yesterday with a test dose of a drug called ATG which destroys Ryan's white blood cells in preparation for the transplant.  This drug is an anti-body and can cause allergic type reactions which vary for each patient but is essential to reduce the risk of rejection.  In anticipation of a reaction patients are given steroids and anti-histime prior to administering the drug and he was monitored very closely with SAT's monitor, blood pressure and electrodes monitoring his breathing.  The infusion lasts for 6 hours and Ryan initially tolerated it well but for the last couple hours was shivering with a really high fever of 39.6 and high pulse.  He fell asleep for a couple hours but when he woke up he felt much better and when we got him out of bed for a bit of exercise he even fancied a bit of a dance!

He continued to be closely monitored until 12 hours after the infusion finished, 6am.  Overnight he received numerous drugs which are administered to prevent Ryan getting an infection or to reduce the side effects of the other drugs.  Ryan had a reasonable sleep but as he is on such a lot of fluids, almost 3 litres a day, he needs to wee often and so woke several times in addition to the observations that were needed.  Overall though he woke bright and cheerful and ready to play the x-box.

So far the second day of treatment (Day -11) has been much the same as yesterday; ok ish this morning and very high fever and pulse this afternoon but today this is persisting although he has managed without a sleep.

Day -10 and Day -9 Ryan will receive this same drug and we hope that his side effects wont get progressively worse.  The first day of high dose chemotherapy is Day -8 which is next Monday.

The rules of isolation

There are many rules in isolation some common sense and some quite extreme but all there for the protection of the patients.  You enter the ward through a disinfection area where you remove your outer clothes such as coats and shoes and change them for a new pair of shoes (we bought some croc types shoes which is what the nurses wear) then you must wash and disinfect your hands before entering the ward.  He has been lucky to get his x-box into his room and has his ipad which has been connected to wifi and so he will be able to facetime friends and family when he is up to it.

Ryan's room has an outer door to his isolation room and an inner door.  The room has an air filter and is pressurised so that when you open the door air comes out the room and does not go in.  Before entering the inner door we must disinfect our hands again and put on a surgical type gown over our normal clothes.  Nurses that enter the room where a mask as they are in contact with many patients but we do not have to unless Ryan gets an infection.  Nothing in Ryan's room is allowed to make contact with the floor with the exception of things that have to like the bottom of shoes and table legs etc.  Electric cables and Ryan's infusion lines must not be allowed contact with the floor to avoid transmission of germs. If they do then they must be wiped clean with disinfectant.

Every day Ryan has to be strip washed, moisturised and dressed in clean clothes that have been washed at 60 degrees and tumbled dried on high.  He doesnt mind this but does tend to get a bit cold as it takes quite some time as we have to use certain clothes on certain parts of the body etc and when he isnt feeling well I can imagine that this will be a chore for him.  He also has a strict diet called a 'clean diet' again this feels very extreme but is there to protect Ryan from any foods which could potentially cause an infection risk - the list of things that he cannot have is very long and includes most of the foods that we want him to eat like fruit and veg although he can have foods that can be peeled like banana, apple, potato.  Only UHT milk and fruit juice is permitted.  Meat has to be thoroughly cooked, over cooked really and highly processed foods are preferred.  Anything in a packet goes really and then has to be cooked for at least 10 minutes.....

The food for patients is selected from a very restricted list of foods such as beef burger, meatballs, sausage, pork.  The patients food arrives cooked and comes cold on a plate to be reheated by parents for the children.  Nothing that I have ordered for Ryan has looked anything like something he would eat but I havent explored the whole menu yet and it takes quite a while when you have to use google translate to interpret what you are ordering!  The other massive downside is that you are asked to reheat the food in a microwave in the parents kitchen.  We dont use the microwave for Ryan but luckily the microwave is also an oven and so that is the way that we are using it despite the fact that it obviously takes about 10 times longer and there is only one means of re-heating and 8 patients and parents wanting to use it.  No-one has complained yet!  There is also a 2 ring hob thankfully.

Luckily he is allowed pasta with sauce, although the sauce has be thrown away 24 hours after opening! He is also allowed pizza and chicken nuggets and so our normal rules about food have to be broken for the time being but I would rather he repeatedly ate the same not so healthy food rather than food that has been heated in a microwave.  Food here is going to be a real struggle, for all of us.  Gareth and I have been trying to eat in the hospital restaurant at lunchtime and that seems to be working out ok.

We are taking it in turns to sleep in hospital with Ryan and have been given a fold up bed to set up in Ryan's room, which we are very grateful for.  Sleeping in hospital is almost impossible, there are regular observations such as temperature, blood pressure and sat's and numerous medications running throughout the night and so machines alarming, etc and then early in the morning the nurses need to take blood.  This is what it will be like for the duration of his stay in isolation and we knew this would be case but want to be here with Ryan to make sure that he settles back to sleep as quickly as possible.  At home he sleeps in our bed, this is an arrangement we are all happy with as long as he isnt doing this when he is 16!

1 comment:

  1. Dear Ryan (and family)

    I am a newly qualified nurse from Tiverton but now am living and working in London on a haematology unit. I am in awe of your fighting spirit and just how brave you all are. I have been following your story and use it to inspire my own nursing practice, education and my patients. I think we could all learn so much from your brave attitude.

    Stay strong and keep being brave!!
    Best Wishes