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.
Monday, 24 December 2012
Friday, 21 December 2012
Monday, 10 December 2012
Friday, 7 December 2012
It has been snowing in Tübingen the past few days and the city is covered in a blanket of snow. We built a huge snowman in the garden of the parents house yesterday and as the snow has continued to fall all day today Ryan has persuaded Gareth to buy him a toboggan with a steering wheel so that he can go tobogganing and cause me even more stress!!
Our little friend Jamie has remained stable the past 48 hours which has been good news, we know that he is still very poorly but stable is good and gives his body chance to fight the virus that was the initial cause of his problems. We did have some other good news this week, Marco, a teenage who had his transplant on the same day as Ryan and who failed to graft has finally gone home after almost 3 months in hospital! The anonymous donor agreed to give a second donation of stem cells which grafted and essentially saved his life. It takes a very special person to give such a gift to someone that they have never met, and I think that one day the family will be able to thank them in person if both parties are willing to meet.
Tuesday, 4 December 2012
I haven't felt much like writing an update lately as there is a lot of sadness here at the moment and I can't write about how we are without mentioning it. I feel like I am constantly distracted with thoughts of the other children that we have become so close to in the 3 months that we have lived here.
Friday, 30 November 2012
|Inside the empty arena watching practice sessions|
It was fantastic, we hadn't expected to see any of the show and had prepared Ryan just for a quick meeting with Travis.
|Ryan meets his hero Travis Pastrana|
Ryan had thought of some questions that he wanted to ask Travis:
|with Travis Pastrana and Josh Sheehan|
Oh my god! I don't think we could believe it! Ryan said 'Travis can I meet Lyn-z please?' and so while everyone was waiting Travis took Ryan into a changing room where Lyn-z was setting up her skateboard ready for the show. Ryan had been waving to her during the practice and they had a quick chat before the three of us and Sally and Travis and about 9 of the Nitro Circus crew walked through the corridors backstage towards VIP area. Along the way we bumped into other members of the team and each time Travis would stop them and introduce them to Ryan explaining what did in the show. For me this was the best bit seeing Ryan walking next to such a huge super star gazing up at him and the look on his face said it all.
Then we had to take the lift up to the VIP area. To be crammed in a lift with such famous, yet down to earth, people was a very surreal experience.
|with Jolene Van Vugt|
Ryan saw the reaction of the crowd when Travis walked out into the VIP area and waited excitedly for him to return. The show started at 7.30 and so eventually the time came for Travis to leave us. I had worried that Ryan might get a bit upset but he didn't, he gave him another hug and said Bye, and just before Travis disappeared into the VIP lift Ryan shouted 'Bye Trav' and they waved a final goodbye.
We cannot thank Travis Pastrana, the Nitro Circus crew and Make-A-Wish enough for giving us all this opportunity of a lifetime. Seeing Ryan bursting with happiness was the best feeling ever and this day will give us all a good feeling for a very long time.
To end : Ryan telling his friends about his experience. Ryan: 'I saw TRAVIS yesterday!!'
Wednesday, 28 November 2012
We are driving (5 hours) to Dusseldorf today and meeting him tonight at 6.30pm! Wont be able to see show but Ryan understands why and also knows that no-one else will getting a private meeting.
He didnt really believe it when we told him. He said 'seriously' 'are you sure!'
Then a bit later he said ' Its not going to be like meeting Santa on that Santa flight is it?' (The Santa was so obviously not the real Santa, you could see the elastic on his beard!) 'No we said this is going to be the real thing!' Ryan did a Big Smile!
Saturday, 24 November 2012
Wednesday, 21 November 2012
Sunday, 18 November 2012
Tuesday, 13 November 2012
Saturday, 10 November 2012
The implications of this new development are have not yet been discussed until the full details are known but its clearly not good news.
In the meantime Ryan is having daily GCSF injections to keep his WBC above 1 and by not having it IV he is able to have these out of hospital, he lets Gareth do it for him. He is really enjoying seeing my mum and dad and we ventured into Tübingen town centre yesterday and let Ryan spend some time and money in a massive toy shop. Its the first time he has been in town and although it was a brief visit, he really enjoyed it.
Thursday, 8 November 2012
Ryan will have platelets today but we are going to wait a while longer for the red blood and see what happens. He copes well with low HB and would rather see his Nanny and Grandad who arrive later today for a couple days then have a blood transfusion.
A T-cell analysis was taken today and we anxiously await the results.
Tuesday, 6 November 2012
On Monday we had clinic for blood tests. Ryan's HB was stable, his platelets had dropped but only by 10 to 22, but his white blood cell count was the best it had been in about 2 weeks at 2.3!
These results could indicate the T-cells given 2 weeks ago have started to attack Ryan's own T-cells. They could have been a false reading....
We went back to clinic today to check whether his platelets had dropped further and all his blood counts were almost identical to yesterday.
All very encouraging but too early to say what is happening... 'We must wait' as the Dr said today. Enough said.
Saturday, 3 November 2012
Yesterday was a long day, we got to hospital at 9am and left at 4pm. The day started with an appointment in radiology to discuss the risks and side- effects of the Total Nodal Irradiation that will be given to Ryan's lymphatic system to kill his remaining T-cells. The consultant in charge of Radiotherapy had to contact Bristol Children's Hospital to find out the exact dose of radiotherapy that Ryan's body has received before he was able to agree to giving him more treatment. They had to determine exactly how much treatment each of his organ's has received in order to ensure that they did not exceed the recommended maximum dose. Using this information they have confirmed that instead of giving Ryan the treatment in one dose, it will be split into 2 or 3 fractions which will reduce the biological dose of radiation his body receives, and will reduce the immediate risks. Not the best start to a morning. Then Ryan had to have CT scans and measurements so that they can ensure that the radiotherapy is only given exactly where intended. He was really good for the scans right up until they drew 3 crosses on him and covered the crosses with a plaster - at which point he got really upset - plasters for some reason has always been something he absolutely hates on his skin. They need to stay on until he has the treatment - and at present there is no set date...
Then we had a clinic appointment where we were anxious to learn Ryan's blood counts; it turns out that they had all dropped since wednesday, but only slightly. This meant that he still has bone marrow function albeit a very poor one. He was borderline for needing both a blood and platelet transfusion and so we are expecting to have both on Monday. At 3 o'clock we met with the consultant in charge and learnt that the T-Cell analysis was disappointing and showed that all of Ryan's T-Cells still originate from him, however the earliest that they could have had an impact was Wednesday and so all is not lost. There were also certain markers in his blood count which the consultant found 'of interest' and showed him that the bone marrow was still functioning. Because of this he informed us that he had decided that it was too soon to admit Ryan for re-conditioning and instead he was going to give Ryan 50,000 of my stem cells. The first time Ryan had been given 25,000 and because these did not cause Ryan any adverse side effects, such as Graft Versus Host Disease (GVHD), the dose was doubled. Whilst Ryan has some form of bone marrow function there is still a SLIM chance that the situation can be reversed and so the waiting continues.
Gareth and I were both quite surprised by this turn of events but very pleased. The last thing we want is for Ryan to have more treatment unless it is absolutely essential. And so we both came away a little lost for words but happy to be in the position that we can continue waiting.
This weekend will be a quiet one due to his low counts and we have been given an injection of GCSF to administer to Ryan on Sunday in the hope that this will keep his white blood count and neutrophils where they are now - both are between 0.5 and 1.0.
All the snow from last weekend has long gone but I thought you would like to see a photo of the snow we found at the castle last weekend and Ryan earlier this week at the park we found in Tübingen. (You can tell who always takes the photo's!) I also wanted to thank you for the kind messages that we have received on our facebook page, by text and e-mail and to everyone that is praying for Ryan and sending him positive thoughts - we really do appreciate it and are sorry that we can't reply to everyone individually.
Thursday, 1 November 2012
Meanwhile Ryan is fine and really enjoyed a halloween treasure hunt in the garden last night with Jamie.
Monday, 29 October 2012
Gareth had a series of tests and examinations today, along with 24 phials of blood taken to check he is fit and healthy enough to be the donor. He will get the results tomorrow and I think he is pleased that he can finally help although didnt want these to be the circumstances.
Plan B as it stands at present is to admit Ryan to the transplant unit on monday to begin re-conditioning. This will involve a regime of chemotherapy and radiotherapy to his lymph glands, the latter targeting his t-cells. Ryan having to have more treatment is what upsets me the most, i cant even begin to put into words how i feel. I think part of how i feel is due to the fact that it was my stem cells that havent done the job that was intended, I know I am not to blame but still cant help that feeling of utter disappointment.
However Plan B will not commence until everyone is certain that the T-cells infused on the 17th have had opportunity to establish themselves and so a blood test to determine the origin of Ryan's t-cells will be done on Friday and urgently on Monday. The results usually take 5 days but I believe they will be expedited.
In himself Ryan remains well, still an x-box addict but we managed to steal him away from it on sunday and took him to the mountains to visit a castle where there was loads of snow! We had a tour and saw the armoury and the crown of the Prince of Prussia and Ryan seemed to find it interesting. After clinic today we went to a park and fed the ducks - always a favourite and Ryan scooted around the lake oblivious to everything going on. Exactly as it should be.
Friday, 26 October 2012
In the meantime plans are in place for Gareth to undergo the necessary tests for him to be the donor, starting with blood tests on Monday....
Thursday, 25 October 2012
The reason for this is that somehow some of Ryan's own T-cell survived the conditioning treatment and are essentially attacking the bone marrow that originated from the new stem cells, and are destroying it. The centre here in Tübingen have been doing haplo-identical bone marrow transplants for over 15 years and we had been told that for other cancers the host rejects the donor stem cells in 10% of cases. However they have been doing haplo-transplantation for neuroblastoma for over 2 years and have not have a rejection for the 30+ children that have so far had the treatment. Why oh why does Ryan have to be the exception the rule again!?!
The doctors and consultants here need time to get together and discuss the best plan for Ryan.Yesterday they gave him GCSF to try and force the new stem cells to reproduce. The T-cells that were infused last week will not be effective until next week at the earliest, the hope was that they would be stronger than Ryan's T-cells and be able to destroy them before they destroy the new bone marrow. However now there is only a very small chance that the new bone marrow will survive long enough for my T-cells to establish themselves enough to destroy Ryan's, it is only a tiny glimmer of hope.
However there are options, and the doctors say there are good options. One option would be that Ryan be given back his own cells however although Ryan has a back up of his own cells but they were collected when he had 20% contamination with neuroblastoma cells and so we never want to use these. He also has a small number of his own stem cells that were collected when his marrow was clear. These are not enough for a successful transplant but may give him some bone marrow function. This option would only be used should the powers that be decide that they want Ryan to go through the conditioning again and then for Gareth to be the donor. The other option would be that Ryan is re-transplanted with my stem cells. He would need immunological conditioning to destroy his surviving T-cells and should not need chemotherapy. But at the moment this is all just hypothetical as the decision will not be ours. But we will ensure that we understand fully the reasons behind any plan that is made. We may get a plan tomorrow but it may be early next week.We are obviously devastated, and very shocked by this news. I swing from feeling really upset to really pissed off. The thought of putting Ryan through more treatment when he already had more than 99% people would have in a lifetime breaks my heart, it really does. But we have to choice as he without a functioning bone marrow he cannot survive.Ryan is totally oblivious to all this stress, he is happy and active, eating, drinking and sleeping well and he looks great. He is the heaviest he has ever been and is really enjoying his food, although still only really wanting my home made spag bol most nights! The likely hood is that he will very soon have to be admitted back into the bone marrow transplant ward and so we have tried to explain to Ryan that his body is fighting mummy's new stem cells and that the bad news is that his body is winning. We have told him the doctors will have a plan but that he will need to go back into isolation. His first concern was would he need to have a wash every day? and his next was that he had better not have a small room like he did the first time!Anyway onwards and upwards! What other choice is there, sitting in a corner and crying isnt going to help Ryan one bit and wont do me any good either so after we heard this devastating news yesterday I went food shopping, just like I had planned to do before I found out. It did take a little longer than usual as I kept forgetting what I was looking for but hey.I promised to try and upload the video of him screaming all the way down the roller coaster and here it is for your enjoyment but best not have a cup of tea in your hand as you might spill it laughing!
Tuesday, 23 October 2012
Wednesday, 17 October 2012
The dynamic of Ryan's t-cells have changed so that the majority are now his. This is a concern as his t-cells could be capable of causing his body to reject the new stem cells. However usually when the majority of t-cells are the host's the normal blood counts are low and not stable but Ryan's counts are still all great. So at present he is an exception to the rule but this may change.
The doctors are concerned but not panicking, they have seen this before but cannot predict the outcome or how long it will take to try suppress Ryans T-cells.
Yesterday the steroid and immune suppressant drugs were stopped to 'take the brake off' the new cells. Today Ryan was given an infusion of my t-cells which were frozen in the lab. (I wasn't even aware there were any frozen!) This will be repeated again every 2-4 weeks to try get control again. The flip side of this is that being off the steroid could trigger the fevers to return and the new T-cell activity could trigger Graft Versus Host disease. We will be monitoring him very closely.
This will delay immunotherapy and our return home but we can deal with both of these things.
We are in the best place to deal with this situation. Probably one of the best places in the world. We trust the doctors and know that they will be closely monitoring Ryan. But equally they respect us and dont hide anything from us.
We are obviously very concerned but will deal with this day by day and not assume the worse. There is a plan b, if plan b is needed.
Ryan is looking really great and i think is feeling less tired. Today he was a little upset that Jamie was going home, albeit only for about 10 days, and he wanted to know when he could go home too. So this afternoon we had to tell him we couldn't go home as soon as we thought, in fact we didnt know when we could go. We expected him to be upset or even kick off but instead he simply said 'That's fine, dont worry, after all there's nothing stopping people coming to see me is there!' We had to explain about school etc but you have to love his attitude. His spirit really does keep me going.
Tuesday, 16 October 2012
Ryan continues to attend Day Clinic twice a week to be reviewed by a doctor, have his weight checked and routine blood tests. This week the plan is to try and reduce the steroid that was prescribed to stop his high temperatures. It was originally 20mg twice a day and this week we are down to 7.5mg twice a day so it's a case of monitoring his temperature to see what happens. If his temperature goes above 38.0 we have to take him into hospital so that bloods can be taken and he can be seen by a doctor - as annoying as this is to us it is not safe to assume that a rise in temperature is purely down to the reduction in steroid as Ryan is obviously very susceptible to infection at the moment. We discussed this with the doctor and he said that providing his blood tests did not show any infection and his infection/inflammation marker was not raised then we could simply increase the steroid and try to reduce it again the following week.
Since the last update we have taken Ryan to a dry toboggan run for half an hour - he had great fun zooming down the run screaming to his Dad to go faster and 'don't brake!' - good to see that he hasn't lost his davedevil streak! He even had a go with me and said 'Mum you weren't as fast as Dad but you did great' - high praise for me then!
Friday, 12 October 2012
Mia, a little girl we see at the parents house who also has neuroblastoma, had her planned surgery 3 days ago to remove the residual tumour but after the operation a blockage in an artery cause her heart to stop. She was immediately opened up again so the surgeons could massage her heart while they looked for the blockage. This happened twice. This kind of news is devastating, she was always running around and was doing really well. Now her mum is waiting to hear if she will make it. When I woke in the night I thought of her straight away and said a prayer.
We also know that a teenage boy who had his transplant, from a matched donor, on the same day as Ryan is still waiting for his counts to increase to repair his ulcerated mouth and stomach and stop the attack of shingles that has reactivated.
Then there is the little girl in the isolation room next to Ryan's. She had a haplo transplant the week before Ryan but failed to graft and so she was given her own stem cells back and is still waiting for her own cells to graft. And a little boy from Ireland who I saw photo's of sitting in the pilot's seat on his flight to the USA to start immunotherapy but due to complications was immediately rushed to intensive care where he is stable but fighting his hardest fight ever.
So much awful, sad news which I cannot help but be effected by. We protect Ryan from this news and smile and joke like things are normal but right now lots of good news would be nice to hear.
Tuesday, 9 October 2012
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.
Thursday, 4 October 2012
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.......
Monday, 1 October 2012
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.
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!