Ryan has been discharged from hospital

Since my last update lots has happened but mostly good things; mainly Ryan being discharged just 19 days after having his transplant, which meant a hospital stay of 31 days.  Even as I write this I can't really believe that it is true, it is totally amazing, he is totally amazing.  He walked out of the hospital back to the car while I walked behind with the empty buggy!

I wont bore you with the details of our stay on Station 14 - the oncology ward.  It was stressful, with poor Ryan having to wear his mask all day, and was not how we envisaged his stay in hospital would end but we have to be thankful that Ryan only needed to be there a few day while he was weaned off morphine and the IV drugs were changed to oral ones.  At least we were fortunate enough to be able to take him back to the parents house in the evening before returning to hospital early the next morning.  Luckily the little boy that we shared the room with in the day was lovely and they understood our concerns and reasons for not wanting Ryan to share a room.  The two boys got on well despite the language barrier and both enjoyed watching Tom and Jerry DVD's.  On Sunday he was discharged to the parents house after a review with the doctor in charge of the ward.  The doctor said that Ryan has done amazingly well and was in very good shape, he just needed to start eating.

Ryan has been very happy back at the parents house, the first thing that we had to do was set up the x-box of course but he has happily prized himself away to play with Jamie who is a couple weeks ahead of Ryan and also now doing really well.  Both boys love Power Rangers so run around the ground floor of the house fighting invisible baddies - it really is great to see them having fun together.

Yesterday Ryan had to attend his first appointment at the Day Clinic where he is seen by more new doctors and nurses.  His blood results were all good and for those interested his counts are now: WBC 3.42, HB 10.8, Platelets 234 and CRP 0.6! All of which are fantastic.  We have to attend clinic twice a week and so now have 2 whole hospital free days which feels fantastic.

In himself Ryan is happy and feels well BUT is noticeably tired after short bursts of energy.  This is obviously to be expected but hard to convey.  He does run around, go on his scooter etc but then needs to rest which is something that Ryan finds very hard to do!  Over the next week or so, as he gets stronger we hope to take him out to see a little bit of the local area but at the moment it is more important that we focus on eating, drinking and medications.  He has to drink a minimum of 600ml each day, ideally 1 litre, as some of the anti-biotics, anti-fungal, anti-viral and anti-rejection drugs are toxic to the kidneys but he is managing this and is also eating 3, albeit small, meals a day.  Each day he has 9 medicines to take, most of them he has to take morning and evening!  I'm surprised he has any appetite with that lot sitting in his stomach.  All in all he is doing amazingly well and we can't be more proud of him than we are today.

Sorry it's a long one ........

The past couple days have been very mixed; Ryan continues to do well in that his mouth and throat are healing and his morphine is being reduced, his counts are good, his CRP has started to reduce but his fevers are persisting and when they come Ryan is a difference boy, shivering, tired and feels very unwell. We took him to the parents house the day before yesterday and he had a bit of a kick about and went on his scooter a bit but then asked to go inside and sure enough his fever was returning.

The doctors believed the fevers were either engraftment syndrome but lasting longer than normal, an auto immune response or possibly an infection.

So to ensure they know what they are dealing with the consultant in charge of Ryan requested a CT scan to rule out any infection in his lungs, this was carried out on Tuesday. It was quite a stressful day.

Yesterday morning we were told the good news that the CT scan was clear and that they had done many tests on blood, urine and stool samples to rule out infection of any kind. All tests were negative, this was a huge relief.

And so the doctor said they felt sure that Ryan fevers were caused by prolonged engraftment syndrome, his body reacting to the new cells. The plan was to give Ryan a steroid to suppress his response they felt sure this would stop the fevers.

Then came the news that as he was doing so well in all other respects, and they had a new admission coming in, Ryan would be moved to the oncology ward.....later that day, yesterday. We asked if he would be in his own room and this was confirmed.

We started packing up the room and had almost finished when the doctor came back to say that unfortunately there was no longer a single room and that Ryan would have to share with another child. I think we felt so shocked that we initially accepted this news, as we understand the pressures on doctor and nurses and knew it wasn't the doctors fault. He assured us the child had no infections and was having chemotherapy.

Gareth and I went to see the room without Ryan to see how much room we had for our things. The room had been lived in by the other family for a while and so things were everywhere, after all they must have only just been told too. The realisation hit us that we were moving from a room where we had to strip ryan from his outdoor clothes as soon as he returned to his room to exposing him to 3 other people (child and parents) and their belongings. Gareth took some of our things back to the parents house and whilst he was away from the hospital had time to think about what we were being asked to do.

I felt very uncomfortable but felt we had no choice. Gareth decided we did have a choice, we would simply refuse to move unless it was to a single room. And so after many lengthy conversations, with nurses and doctors who were called in from home, ryan was transferred to his own room in the oncology ward, just for the night. In the morning he would have to move into the room with the other child. We accepted this as in the day Ryan can wear his 'industrial' looking mask that we were told he has to wear everywhere that he is in the company of others, with the exception of close family and friends that know how important it is to be well.

And so today we are sharing a room with Marco and his mum, Ryan is wearing his mask and being really good about it. There is no single room tonight so part of the negotiating that Gareth did was to ensure that whatever needed to happen to get Ryan back to the parents house tonight happened.

The conditions are Ryan must take the majority of drugs orally, must demonstrate he is eating albeit small amounts and must drink a minimum of 600ml as some of the medications are toxic to the kidneys. He is also withdrawing from morphine which can sometimes be a slow process and depends how the individual feels.

In addition his blood results had to be good. Luckily they were better than good - his platelets are in the normal range for the first time in over a year! His WBC is stable at 2400, his HB has increased but most importantly his CRP ( infection marker) has dropped meaning that 2 of the 4 iv antibiotics can stop.

And so the plan is that we can leave the hospital tonight at 9pm and Ryan can sleep with us at the parents house, mask free, and return to hospital tomorrow for 8am. We will have to wake him during the night to give him medicines but he understands and doesnt mind.

This time tomorrow we may be one step closer to being discharged to the parents house.......

Day +13

He got out and here is the photo to prove it:

He actually enjoyed the hour and I cannot begin to explain the happiness I felt watching him walk out the transplant unit. There is still a long way to go, he still has a fever, CRP and is on morphine and many other iv drugs but this hour was a momentous achievement. But I know Gareth felt the same. When Ryan left isolation following his autoglous bone marrow transplant transplant at the age of 2 he cried in pain when he tried to bear his weight as he had been in bed so long. With our help he managed to walk the 30 paces from isolation to non-isolation before getting back into bed. It was heart breaking. This time though he wanted to walk, we visited the small play areas within the empty hospital (it was deserted as it was a sunday) and then ventured outside to the slide and basket swing. He did need the buggy on the way back to the room but it was still amazing to see him.

He was as good as gold coming back into the room. We had to remove the clothes he had worn outside, wash him and get him reconnected to his iv machines.

His temperature is persisting and with only paracetamol it isnt going below 38.0 so this morning, he is very tired. The consultants here have never known anyone be allergic to novageen and as it is so effective against fever they wanted to be 100% sure that Ryan was reacting to it. So this morning when his fever reached 39.1 they wanted to give him a half dose of novageen and monitor him, with anti-histamine at the ready. Ryan was not impressed and told the nurse they were really mean making him get hives.....  Sure enough within 5 minutes he started coughing, went pink and got hives! But even with a half dose his fever reduced to 38.2!

Today, without the help of GCSF, his WBC is 4,740 and so today he has 2 hours of freedom. His CRP has also increased but we are told this happens during engraftment but as his temperature is persisting unfortunately also means he will change to 4th line iv anti-biotics until the CRP is less than 1 (today it has increased to 3.0 or 30 as it reported in the UK)

He has to wear a mask everywhere except for in our room at the parents house, the car or in his room in isolation and will need to do so until Day +100 but so far isn't complaining. His 'clean diet' has to continue for the same period.

Day +12

Well yesterday had been going really well and then late afternoon Ryan spiked a temperature, he was given novageen (a medicine very effective with fevers and pain that he had a lot during immunotherapy) and unfortunately he reacted by going red and getting hives again. So now we know that it wasn't the antibiotic that he reacted to a couple days ago but the novageen. This has never happened before apparently but means that Ryan can now only have paracetamol for a fever.  They do not use neurofen as it has an impact on platelets.  The fever persisted over night reaching 39.2 but Ryan mostly slept through the hourly observations.

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/

Day +10

This morning Ryan woke with a sore throat again. Today instead of increasing his background morphine we requested a bolus to give him extra pain relief for a few hours until he has managed to drink and lubricate his throat. Once that kicked in we got busy decorating the room for Gareth's birthday.

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!

Day +9

Ryan woke up again with a sore throat and mouth despite the morphine having been increased yesterday and so this morning the morphine has been increased again.  It is still considered a relatively low dose but has really helped and he is much more chatty today, although still very tired.   Although he has been in pain his condition has been better than we expected, as he has still been able to swallow and talk.

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.

Day +8

Yesterday was much the same as the past few days.  But this morning Ryan woke up and wasn't his usual chatty self. He eventually admitted his throat hurt and once the morphine was increased he started to feel better.

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!