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.
Sunday, 30 September 2012
This morning when he woke his termperature was normal. His blood count showed his WBC was 4850 and so the doctor reminded Ryan that he could escape for an hour later in the day. No real reaction from him this time!
Unfortunatley though later this morning Ryan started shivering and spiked another fever of 38.5 and at the same time the remainder of his blood results were available showing that his CRP (infection marker) had increased from 30 to 150. And so the doctor had to talk to the consultant to see whether they needed to treat this as an infection and change his anti-biotics and not let him leave for the hour.
The consultant said that if his temperature reduced with paracetamol and didn't return this afternoon then the anti-biotics would not be changed (he is currently on 3 third line anti-biotics) and he could go out. At the time of writing his temperature is 37.9 and he is in bed under the duvet so if we do go anywhere it will only be a brief walk around the hospital but at least it a change of scenery after almost 4 weeks in isolation
I also know that some of you would like to know how the 2 other English children are doing and I'm sure they won't mind me telling you:
Vanessa Riddle was a record breaker seeing her first WBC on day +6 and being discharged on Day +14! Her counts have stayed strong, she looks fantastic and has been feeling well until getting a slight cold in the last day or so. She has been attending a day clinic twice a week for the last two weeks and providing her counts tomorrow are still good she will be flying to Scotland on Thursday for approximately 2 weeks before the start of her immunotherapy treatment. Vanessa has become a twitter celebrity and has 32.5K followers! You can follow her story at http://vanessasjourney.com/
Jamie Inglis has also done well, his counts started to show at the same sort of time as Ryan's and have also stayed strong. Unfortunately though Jamie's mouth, and tongue in particular, was damaged by mucusitis making it very hard for him to eat anything. He was moved from isolation to an oncology ward last week as the only thing keeping him in hospital was eating and drinking. He has been getting out most days to the parents house and has been happy and active and has slowly been able to eat again and is now hopeful of being discharged to the day clinic tomorrow. You can follow his story at http://www.keepjamiesmiling.com/
Friday, 28 September 2012
Ryan bought Gareth a remote control helicopter which he is looking forward to flying around the room later today. But Gareth got the best birthday present he could wish for when the doctor announced Ryan's white blood count had increased from 250 to 1,710 (0.25 to 1.71)! Happy 40th Gareth xx
The doctor also said 'If your count stays above 1,000 for two more days Ryan you can go out for an hour'. Ryan replied 'Thanks but i'm not sure I can be bothered, it's too much hassle!' She did laugh! The trouble is he knows that coming back and being reconnected to all the machines is no fun but we will talk him round as the fresh air will do him good, even if he does have to wear a mask!
Thursday, 27 September 2012
We had good news today that Ryan's white blood cells have started to appear and, with the help of IV GCSF, should increase over the next few days; today they are 250 (or 0.250 as they are reported in the UK)
It will take days for the new cells to repair the mucous membrane of Ryan's mouth, throat and intestine. As a result of the chemotherapy the top layers of skin havent been able to renew, some areas are worse than others and obviously we can only see the damage in his mouth but this gives us some idea of the pain he is experiencing and the reason that morphine is needed. There are patches in Ryan's mouth that are white and wrinkled and then that layer of skin will come away and a red raw patch will be exposed until the new skin grows. This is part of the normal healing process but usually the most painful part. This is what will happen throughout Ryan's body, the top layer will come away and then the raw skin will heal - so unfortunately the pain usually gets worse before it gets better. This healing and inflammation of the raw skin causes temperatures and an increase in the infection markers (CRP) within the blood meaning that Ryan will continue on IV antibiotics until his temperature and CRP are within normal ranges.
Ryan is also experiencing back pain which is a result of the GCSF stimulating the new stem cells and although uncomfortable is also a good sign.
And so today is a good day.
Wednesday, 26 September 2012
The doctor reviewed his blood results and said that the first signs of engraftment were showing. He told us that he expected to see an increase in white blood cells in the next day or two but at the sametime we should expect Ryan to develop a fever as the cells cause inflammation around the body as part of a healing/cleansing process. Although this is expected and a good sign it can also cause problems such as fluid in the lungs and the fever has to be treated as a potential infection and so anti-biotics will be given.
And so this afternoon Ryan spiked a fever and was started in anti-biotics. Unfortunatelt he reacted to the antibiotics by itching all over and getting hives! He was given anti-histamine and this settled down quite quickly but this has probably been his worst day so far.
Having said that he has managed to have a quick x-box game on-line with his mate Adam who has literally just walked back in the door from treatment in America! And at the same time he was having his laser therapy!
Monday, 24 September 2012
Having said that last night his pulse was high and his blood pressure was low while he was sleeping and so a doctor was called to check him over. His blood pressure was taken every 15 minutes from 8pm until 1am when things seemed to settle down and then the monitoring reduced to 2 hourly. Luckily Ryan was totally oblivious to all of this and had a reasonable sleep.
The doctor looked over his blood results today and said they were perfect but there are no new cells as at this morning, it is still early days but that doesnt stop us wishing for them to appear....
Saturday, 22 September 2012
This morning he says he's ok and is quite cheerful. The low dose morphine is controlling the pain in his throat. He hasnt wanted to eat but is drinking.
You will notice that Ryan always seems to be wearing the same thing in the photo's. Well I brought lots of different t-shirts and comfy joggers to wear in the day and PJ's for night time but there is a constant draught from the air conditioning system that keeps the room pressured and so Ryan wants to wear his long sleeve PJ's all day too. He has a set of 3 that are very similar and are his favourite things to wear and so he wears them all the time :-) This photo took 10 attempts as in the 9 others his eyes were still looking at minecraft!
Friday, 21 September 2012
He has said his throat is sore this morning when eating breakfast and so he will probably start on a continuous infusion of low dose morphine later today as the pain will get progressively worse until the new stem cells graft. In himself he is still happy to see his teacher and play x-box but is noticeably tireder these past few days.
A couple days ago we started a laser therapy which is being trialled and is hoped to reduce the effects of mucusitis. It involves a laser being shone onto the effected area, cheek or neck, while Ryan is sitting in a chair watching power rangers. It is supposed to stimulate the blood circulation in these areas and slow the mucusitis. It has been used for 2 years in a hospital in Stuttgart with some promising results but not for long here. As there are no side effects and its painless Ryan agreed to give it a try. It's ten minutes each area twice a day, although so far we have only managed it once as Ryan's mornings are quite busy with the washing routine, breakfast, physio and his teacher but we are trying to rearrange it so we can do it twice.
Unfortunately I felt like I had a cold coming yesterday afternoon and during the evening was sure I had something so left hospital early. Although I feel ok and 'it's just a cold' and i'm not coughing or sneezing I am going to stay away today to ensure i dont pass anything on to anyone, especially Ryan. I hate being away from him but would hate it more if he caught a cold from me. Im hoping a day of doing nothing and a good nights sleep will sort me out and I'll be fine tomorrow!
Wednesday, 19 September 2012
Tuesday, 18 September 2012
Monday, 17 September 2012
Ryan had a reasonable night and is still doing well, he perked up after a blood transfusion and does not yet have mucusitus so is still drinking and eating small amounts of food although the chemo has effected his appetite.
And to finish the day on a positive note the doctors have just confirmed that they collected enough stem cells in the one day and so I dont need to go back tomorrow. Apparently there are currently 23 million stem cells and 2 million is the minimum requirement. The doctor explained that between 30-50% are lost during the preparation process so the actual number being given to Ryan is not yet known but he will have them all.
Sunday, 16 September 2012
Although he did feel sick this morning Ryan hasnt actually been sick and has eaten small amount of breakfast and lunch and his mouth is still ok. We are very surprised he is so much better today and really really pleased. So he is back on-line on the x-box!
Today is the end of conditioning and tomorrow he has a drug called cell cept which is designed to reduce the risk of Ryan rejecting the stem cells.
First thing tomorrow morning I have to go to a different clinic where my stem cells will be harvested. My sister is coming over for a few days to help out and Ryan is looking forward to her coming. Hopefully I will get to see Ryan later in the day and by the end of tomorrow I should know whether I have to repeat the procedure a second day.
Saturday, 15 September 2012
He did manage to speak to his cousins on facetime earlier and has been on the x-box but I think that now there will be a change in his condition until the new stem cells have grafted.
On a positive note my blood was tested this morning to see how I am responding to the GCSF injections and I was told that the results were perfect. I have 42 white blood cells and 38 neutrophils - both many many times the normal upper limits and a good indication that the harvest will be successful.
Friday, 14 September 2012
Thursday, 13 September 2012
He is eating well and genuinely seems very happy. Today he skyped our local hospital and loved seeing all his lovely doctors and nurses. He said afterwards that he missed them all.
Want he really needs at the moment is a good nights sleep but it might be a while before that happens for any of us !
P.S. My injections have started and after waiting over an hour for a nurse to be free to inject me I decided to do it myself. Im sure that not many people enjoy injections and I will count myself among the majority who dont but all I had to do is think of all the wonderful brave children I have met over the past few years to realise that the little part that I play in all of this pales in significance compared to what they have been through and are still going through. A shining example being my wonderful son.
Wednesday, 12 September 2012
Just before bed he was chatting on the phone to his mate Adam who is in America having treatment. Out of the blue Ryan says 'My mum starts injections tomorrow Adam' and Adam replies 'About time she had a taste of her own medicine!' Cheeky! Here he is multi-tasking...
Tuesday, 11 September 2012
We both had a bit of a rubbish night, less fluids but still 100ml per hour - 24 hrs a day. This is because the drugs Ryan is having are destroying cells in his body, when cells die they release uric acid, when many many cells die the amount of uric acid can damage the kidneys. So the fluid is to ensure the kidney's are flushed, in addition Ryan is also given a drug to make him wee frequently. Last night his nappy leaked at 10, 12, 2 and 5 plus he also woke for a wee in between! He refused to bother to go back to sleep after 5. He said whats the point! Tonight we are trying some additional padding in the nappy but today is going to be a long day.
Hopefully though he will feel well like yesterday and we have even managed to get x-box live working and so when his friends are home from school he can play on-line with them.
We were amazed to learn the Vanessa, one of the other children from the UK, is being discharged to the parents house this afternoon after approx 4 weeks in isolation! Jamie, the other english child, is doing ok although was hopefully at his lowest point yesterday with mucusitis and several other unpleasant side effects from treatment. Although he is on morphine he is coping and the doctors are hopeful his new stem cells will start to graft in the next few days. Their experiences are very encouraging for us to hear but nothing can be taken for granted and they all still have a long way to go.
Monday, 10 September 2012
Saturday, 8 September 2012
Friday, 7 September 2012
TreatmentThe 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 isolationThere 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!
Tuesday, 4 September 2012
We arrived in Tubingen yesterday at 23.45 local time after leaving our home in Exeter at 9am. Ryan was as good as gold on the journey, he did occasionally moan about how boring it was and kept asking how much longer but mostly played happily on his new ipad (kindly given to him by the local charity Richard's Wish) and watching Power Ranger movies (loaned to him by Adam). He was asleep when we arrived at the house but as promised we woke him so that he could see the house quickly and he went straight back to sleep. The house is beautiful, just over a year or two old I think and very clean and modern. This is where either Gareth or I will be sleeping while Ryan is in isolation with the other of us. We will take in turns staying with him, even though the nurses tried to talk us out of staying in hospital as we will get very little sleep but this is little price to pay although of course it will take its toll.
Today we had to go into Klinik at 11am for Ryan to be checked and for me and him to have more blood taken. One of my tests needed repeating and Ryan's tests were just routine. Then he had to be checked over by a doctor and the inevitable paperwork had to be completed. Then we were free to go until 3pm when Ryan was due to be admitted to hospital.
We have met the other english families and were really pleased to hear that they are both happy with the care that their children, Vanessa aged 12 and Jamie aged 7, have received. They have both come here for the same treatment as Ryan. Vanessa has been here approx 3 weeks and Jamie approx 2 weeks and both are tolerating the treatment well. This obviously doesnt mean that they have sailed through it but does mean that so far there have been no complications and everything is going to plan - we hope and pray for the same to be true for Ryan. Both families are fundraising with NB Alliance UK and we all have a lot in common and it is certainly good to see some friendly english faces.
To cut a long story (afternoon) short in summary we didnt end up getting to see the doctor until after 7pm and so after some discussion it was agreed that we could all go back to the parents house for one more night and return to the unit in the morning. Initially Ryan wasnt happy about this as he said he didnt want to be woken up early and rushed into hospital and so he wanted to stay in hospital??!! but somehow he managed to negotiate a 9am arrival instead of 7am! Such a grown up boy!