Today Ryan is being discharged to the parents house here in Germany.  Good news I know but for some reason I feel more anxious than excited.  Now he has to eat to maintain his weight, now he has to drink a minimum of 600ml a day.  He has a continuous infusion giving him the essential vitamins and minerals that he is loosing through his kidneys, via a portable pump.  He is far from being well but he is pleased to be leaving hospital after 6 weeks, although the doctors and nurses have all been fantastic.  Every day we will need to come into hospital to the day clinic for a new bag of fluid, for IV antibiotics, GCSF and blood tests.

On Monday we were told that the adenovirus that was in the stool has now also been found in the blood.  The blood test was taken last monday, and at that time the levels of virus were classed as low.  This is a huge concern, as this can be a very aggressive virus, and Ryan's t-cells (which are needed to fight the virus) are still being very suppressed by the numerous medications he is on.   The result of virology tests take several days to analyse and so you only know the situation days ago and not the current situation. 

Ryan blood counts, that had been stable, have started falling again.  We are struggling to get the levels of the immunosuppressant drug (tacrolimus) right, we have to reduce this drug slowly but currently it is still having too much of an impact on his blood counts.  He has need a blood transfusion and platelets in preparation for a further treatment of Extra Corporal Photopheresis (he now has two 4 hour sessions a fort night).

The doctors therefore took the decision to stop the daily IV anti-viral, as this also has an immune suppressing effect, and have further reduced tacrolimus.  Over the course of the next week this should allow the t-cells to multiply, they simply have to.  There is obviously a risk involved in stopping the anti-viral as this targets the HHV-6 virus that is also present in the blood.  The other worry is that if the T-cells multiply too quickly the GvHD will flare up. 

He has been having a drug targeting the adenovirus, every fortnight, and this involves an overnight stay in hospital as he has to have fluids before and after the drug to flush it out of his body.  His next treatment is next Monday and so he knows that he has to come back into hospital then but just for one night. 

Ryan has been feeling very homesick lately, he is tearful at some point most days, the last thing we need is for to get discharged and then to have to be re-admitted and so we are not making too much fuss about him staying at the parents house.  As you can imagine this is a very stressful time; I am trying to stop my insides freaking out but end up feeling like I am holding my breath.  We are trying to focus only on today, deal with what we know today, how Ryan feels today and not think about anything else.  

I haven't really got much change to report, some things have been getting better and some worse, each day it seems that Ryan has another symptom to deal with.

This past week his blood pressure has caused problems again and so the medication had to be increased to 4 times daily, meaning we need to give him tablets during the night.  The kidneys have continued to 'leak' minerals and so an ultrasound of Ryan's liver and kidneys was done to look for possible causes but nothing obvious was found.  And so Ryan has needed to have a continuous infusion of amino acids which replaces the minerals he is loosing and has remained an in-patient.  The doctors are now arranging a portable pump so that Ryan can become an out-patient with daily visit to the clinic and then sleep with us at the parents house.  It is hoped that this will happen sometime next week.

I cannot remember the last time that Ryan actually ate something significant, for example yesterday he ate a third of a banana, thats it, nothing else. He is drinking water and has tried energy shakes but simply has zero appetite and feels full or nauseas.  So he is still very weak and exhausted, his stomach is bloated and he is very thin, which I find upsetting to see, especially as he was at his heaviest ever weight just days before the GvHD started.  

When you look at the numerous medications that he is currently taking it is no surprise that he doesn't feel like eating, each day he has to swallow around 40 tablets/syringes of medicine, (it was more than this) some are to supplement his body and some are prophylactic medicines like anti-virals, anti-fungals etc.  At present all are essential but this can't help the situation with his stomach or appetite.

The viruses remain present in his stool and blood but are not currently causing problems, we just have to wait for his t-cells to multiply and destroy them.

The good news is that the steroids, which have the biggest impact on suppressing his immune system, have been stopped.  The other immunosuppressent drug has been reduced.  His blood counts have been quite stable since the new stem cells have grafted and he hasn't needed a blood or platelets transfusion for about 10 days now.  The GvHD on his skin is barely visible, his mouth is still slowly improving, his liver enzymes are 'ok' but his stomach is slightly worse again as we try and introduce foods.  The GvHD is still clearly effecting the gut, and could flare up again if the immunosuppresent drugs are reduced too quickly.  It is all a very fine balancing act to get the levels of drugs right - enough to control the GvHD but not to increase the side effects.

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Unfortunately the improvement in Ryan didn't last longer than 24 hours; the nausea and headaches returned the next morning and he continued to feel exhausted.  The levels of the immunosuppresent drug present in the blood are now less than half of what they were and so the doctors informed us that the symptoms are probably due to the low levels of sodium in the blood.  Several other levels are also low such as magnesium and phosphate but sodium is the most effected.  Ryan had been taking tablets to supplement his sodium but these were not enough to raise the levels.  The exact cause of these low levels are not known but it is listed as a side effect of the immunosuppresent drug…..

And so on Saturday he was started on a continuous infusion of sodium which has slowly been increasing the levels in his blood.  By Sunday the difference in Ryan was noticeable, the nausea had gone and he was much brighter in himself.  He started eating, albeit very small amounts, but at least that is better than nothing and a step in the right direction.

Another piece of positive news is that yesterday Ryan's platelets incremented, without a transfusion, for the first time since October.  They were 34 on saturday and today they are 66.  Still a long way to go until they hit normal ranges (150-600) but a positive sign that the stem cell boost that was infused 19 days ago has grafted and his body is trying to produce new cells. His HB seems stable but his white blood cells are still being suppressed by the steroids and immunosuppresent medication.

And finally we would like to wish my lovely niece Chloe, who is 18 today, a very Happy Birthday.  We are all sad to be missing her birthday celebrations but hope that she enjoys her special day.

We didn't get to leave hospital after all.  The blood pressure became quite a problem causing severe headaches and nausea.  Ryan stopping eating again and generally felt quite rubbish.  The cause is suspected to be the higher levels of the immunosuppresent drug Tacrolimus.  The switch from IV drugs to oral has meant the drugs are effecting Ryan differently and it is a fine balance getting the levels right.

The immunosuppresent drug has now been reduced and the nausea has gone but the blood pressure may take a little longer to correct itself.  Ryan has been started on blood pressure tablets and today has been his best day since the problems started last weekend.

And so instead of being discharged to the parents house Ryan has been moved out of isolation in the bone marrow transplant unit and into a room in the oncology ward.  (There is no longer swine flu on the ward, thankfully)  We have our own room and as Ryan has an infectious virus in his stool we are 'barriered'. This means that we are not allowed to use the communal kitchen, as children with low immune system eat in the kitchen on this ward, and so if Ryan or us want any food or drink we have to buzz for a nurse to get it for us. (As if they haven't got enough to do!) This is not ideal as you can imagine, although the staff assure us that is has to be this way.

Looks like tea and toast will be on the menu for Gareth and I of an evening, although Gareth is considering buying steak and potatoes to see if the nurses would cook steak and chips for him!  

I talked a lot about treatments but I haven't really gone into much detail about how Ryan has been feeling in the last couple updates so thought I would take the time to try and put it in writing.  

I had said that Ryan is still very tired, although weak and exhausted would probably have been a better description.  He is thin and has lost muscle as he has been in bed so long.  

The need for him to be an in-patient has changed now that his stomach is repairing and can tolerate the medicines orally.  Most of his medications have now been switched to oral to enable him to be discharged to the parents house later this week.  He is on so many medicines, several of which have unpleasant side effects.  The most recent side effect to materialise being high blood pressure causing headaches which have also made him feel sick.

His treatment will continue though and it will mean that every day he has to come into hospital for either ECP or IV anti-virals, anti-body and/or anti-biotics.  Although it is a positive step it will actually be harder on Ryan initially.  He will need to drink a minimum of 500ml per day and will need to eat as his IV nutrition will stop when he is discharged.  His taste buds are not back yet, his tongue is still coated with a layer of dead white cells although it is improving. 

At present he is eating the equivalent of about one meal a day and drinking about 250ml.  Apart from obvious reasons he also needs to eat to ensure there is something in his stomach other than medicine, as the medicine alone will make him feel sick.  Already it feels that we are constantly asking him to swallow medicine, eat or drink.  He also needs creams applied 4 times a day, something that he hates.  

He is feeling quite low, tearful at times, and misses his home and friends very much.  He still manages to play on-line with friends for a bit each day but often has to quit because he is tired or has a headache.  The ECP causes his eyes to be sensitive to UV light, including the TV, and so he has to wear special UV glasses.  He is currently wearing some which are too big but has now chosen his own orange (!) ones which should be arriving in the next few days.

Unfortunately there is still a long way to go before there is any talk of Ryan returning home to the UK, something that he is very keen to do.  For the time being this is the best place for him.  

Over the past week Ryan's stomach has slowly continued to improve, so much so that he did not open his bowels for over 24 hours and when he did it was not completely liquid.  As of today he can return to eating the 'clean diet' that he has been following since his transplant in September.  Although this is still restrictive it is a lot better than he has been allowed in the past few weeks and he is very pleased about this.  

His liver enzymes are still elevated but only 1 or 2 of them and not all, there is only minor evidence of GvHD on his skin and his mouth is slowly but surely improving although he can not taste everything yet.

Unfortunately the viruses are still present as they were last week; ADV in the stool and HHV-6 in his blood plasma.  He has been started on additional anti-virals to try and contain them.  The doctors are also keen to reduce the immune suppressing steroids as quickly as they can to enable his t-cells to multiply and attack the viruses and so in the past 7 days they have reduced the dose from 12mg twice daily to just 5mg twice daily.

Each time they are reduced Ryan gets a temperature, although it cannot be assumed that the reduction in steroids is the cause, each time it has to be treated as a potential infection.  It happened again this week and the doctors said the cause could have been one of 4 things: the reduction in steroids, the engraftment of the new stem cells, the virus or a bacterial infection.  Either way in the past 24 hours the fever is subsiding and the steroids have not needed to be increased again.  

It has been 11 days since the stem cells were infused but there is still no sign of his blood counts improving; today he is having a blood and platelet transfusion.  They usually appear 10-14 days after infusion and so we are hopeful to see signs of engraftment in the next few days.

Ryan is mostly feeling very tired, quite understandably. There is so much going on in his body.  But the doctors are very pleased with his progress and are still talking about possibly discharging him mid-week if he continues as he is.