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.
Thursday, 31 May 2012
We have arranged to have a consultation with Dr Lang in Tubingen on Monday 11th June. We need to fly from Heathrow the evening before for a morning appointment. It is not mandatory for Ryan to come, and as we never really like to talk about treatment in front of Ryan, we have decided he can have his first sleep over at his cousin's house. He was excited about this but after some thought has decided he will miss us! After all we are never apart from each other so its only natural but hopefully he will enjoy it.
This week Ryan should have started his 3rd cycle of chemo but his blood counts, platelets and neutrophils, were too low. He has continued to need GCSF injections to boost his neutrophils and his platelets today are only 13 so he will be having a transfusion tomorrow.
This morning we were in hospital for a synacthen test. Ryan stopped producing the steroid cortisone as a side effect of dexamethasone. This has meant we need to give him hydrocortisone 3 times a day and carry an injection of cortisone with us at all times in case he become unwell as the body needs cortisone to respond to a crisis situation. In such a situation the pituitary gland in the brain releases a hormone which gives a signal to the adrenal gland to produce cortisone.
Today we didnt give him his morning dose of hydrocortisone but instead went to hospital at 9 o'clock for a special test. Ryan was injected with a synthetic form of the hormone released by the pituitary gland and then blood taken at regular intervals to see if his body could respond appropriately.
We also had a review with Ryan's lead consultant from Bristol and he is going to start the process of applying for funding for treatment, although it is expected it will be declined!
This afternoon Ryan has a review with his tutor and her manager to assess how his home tuition is going. We are really pleased with his progress and despite the fact he only sees his tutor twice a week for one and a half hours, she says he is doing really well. He didnt see her at all for 5 weeks when he had radiotherapy but she says he had remembered everything she had taught him so she could pick up where she left off. I have to be honest though and say that he still thinks learning is boring and would rather be learning stunts!
A bit about our fund raising; THANK YOU, THANK YOU, THANK YOU!! We cant believe that in the last month the fund has increased from £30,000 to just over £60,000! Its just amazing and we are so so thankful to everyone helping us.
I have spent some time updating the events page with all the public or sponsored events I know about and will try and keep it up to date. Thank you to everyone supporting these events. We try and attend any that we can and I'm sorry that we can't make them all but this past weekend we managed to catch up with the Robinson Family Cycle Relay team after they finished their 80 mile relay. I've added some photo's and news of amounts raised at recent events to the events page, please take a look.
Saturday, 26 May 2012
Ryan’s MRI scan is clear, there is no sign of the tumour that had been in his spine encasing his spinal cord. It has gone. Gareth and I didn’t dare believe this was true when we heard it on the phone on Thursday evening. We didn’t allow ourselves to believe this. There must have been a mistake, it can’t have vanished, they told us it was a possibility but extremely unlikely. We needed to wait until we met with the consultant, face to face, and saw the images.
But it is true. Even typing this makes me cry, happy tears though. We asked if they were sure, really sure, that it has gone. Yes it was double checked and we were shown the MRI from February and then the MRI from last week. They are noticeably different. There really is nothing left. This is truly the best news we have ever had and feels like we have won the lottery. But at the same time I know that we both feel a sadness for the other families that we know that have recently lost their beautiful children to the disease or those that are still fighting, and fighting hard. We, like them, will never take a day with our child for granted, and will continue to live life day by day, enjoying every single moment.
What does this mean for Ryan? Well this means that there is now no visible sign of neuroblastoma in his body but the key word is ‘visible’ sign. This is not a guarantee that there are no individual cells, dormant, waiting. When Ryan originally received remission he was 2, he had had 3 months of aggressive chemotherapy followed by an 11 hour surgery to remove the remaining tumour from his tummy. The scans after this were clear as they are now. He then had high dose chemotherapy, a stem cell transplant (a type of bone marrow transplant where you receive your own cells back) 14 fractions of radiotherapy and 6 months of cis-retonolic acid (similar to oral chemo). Despite all this treatment he went on to relapse at the age of 4, as unfortunately most children with this disease do. We had been told right at the start of treatment that Ryan’s chance of survival 2 years past diagnosis was 30%. We have never been under any illusions that this was an easy cancer to beat.
As you know he then endured 6 further cycles of chemo, and MIBG therapy (internal radiation treatment) before going to Greifswald, Germany for immunotherapy. After the 4th cycle of treatment again his body was again clear of disease but just 3 months later a new tumour had appeared in his spine. No one saw this coming but when his original scans were examined we were told that the site of the latest tumour had showed signs of disease back in 2008 and so it was likely that cancer cells had remained dormant until this year, when they started to grow again.
Now we have several choices. This time it is different. We have never had choices before, not really. Sorry this is going to be a long one…..
Our first choice is we can do nothing, we can stop treatment. There is a possibility that the disease has really gone this time, gone for good. We can try and resume our normal life and wait and see…. This is so very tempting as Ryan, our beautiful only son, has surely been through enough, more than most people would have to experience in a lifetime. But if it comes back again…. If it comes back again it is very unlikely to come back as an isolated tumour, it is more likely to come back with a vengeance in his bones and marrow as it did before. He would need chemotherapy to take control of the disease but he has now had every type of chemotherapy known to work on the disease. He would need a strong bone marrow to allow his body to tolerate such treatment, but Ryan does not have a strong bone marrow. His counts have not been in the normal ranges since November 2010 and it is likely that it will be many years before they would return to normal. His options would be to try whatever new trial treatments were available at the time, most likely abroad, but you need to meet criteria to join these trials and most need a strong blood count at the start of treatment.
The other options that we have been given are to put Ryan through another bone marrow transplant, originally it was suggested with his own cells but unfortunately we have been unable to collect sufficient stem cells for him to have a second autologous transplant (his own cells returned).
So we could choose to have a matched bone marrow transplant from an unrelated donor. To minimize potential side effects, this type of transplant would use transplanted stem cells that match Ryan’s own stem cells as closely as possible. ‘People have different sets of proteins, called humanleukocyte-associated (HLA) antigens, on the surface of their cells. The set of proteins, called the HLA type, is identified by a special blood test’.
‘In most cases, the success of allogeneic transplantation depends in part on how well the HLA antigens of the donor’s stem cells match those of the recipient’s stem cells. The higher the number of matching HLA antigens, the greater the chance that the patient’s body will accept the donor’s stem cells. In general, patients are less likely to develop a complication known as graft-versus-host disease (GVHD) if the stem cells of the donor and patient are closely matched’.
But this option is not proven to offer a chance of a cure, this option is what it is, an option based on the knowledge and experience of Ryan’s consultants. Ryan would have a new immune system, which over time would grow stronger and the hope would be that the cancer would never return.
And then we have the option to go to Tubingen for a Haplo-identical transplant. In Tubingen, they have a specialist clinic where they have been treating children with neuroblastoma for many years, trying to find a cure. They use the stem cells from a parent but they are not looking for an exact match. The idea (in layman’s terms) is that the new cells have an anti-cancer response when infused into the body, they destroy any remaining cells, which is the job that should have been done by Ryan’s own immune system but it is not able to. The flip side to this is that the donor cells also attack healthy cells in Ryan’s body, this is known as Graft Versus Host Disease. GVHD sometimes develops when white blood cells from the donor (the graft) identify cells in the patient’s body (the host) as foreign and attack them. The most commonly damaged organs are the skin, liver, and intestines. This is a serious condition and if it cannot be controlled can effect quality of life. But in Tubingen they prepare the donor cells in a way to maximise the anti-tumour effect and minimise the GVHD. GVHD is only one of the many risks associated with this, and other, types of bone marrow transplant.
Our consultants have talked through the options and possibilities with us and are genuinely not able to advise us the option that is best for Ryan. The ultimate decision lies with us. Our decision is unchanged; we intend to take Ryan to Germany for further treatment. Again there are no guarantees that this will cure Ryan but there is a chance. This is the hardest decision we have ever made, but it also feels like the right one. To do nothing feels wrong and the other options have no evidence to support there success or otherwise.
So we have contacted Tubingen to make an appointment to discuss the treatment further, to ask questions and to understand the risks involved. At the same time our consultants will do the same and within the next few weeks we should have a timescale for the transplant.
Then to the financial side of things; we are hoping to raise the full amount of money, but it is now looking unlikely that we will raise it in time. The charity that we are fundraising with, The Neuroblastoma Alliance UK has kindly agreed to step in to provide the additional money from its charity reserves if there is enough available when we need it. However we are committed to continuing our fund raising efforts to try and cover all the costs of Ryan's treatment. This means when another family comes forward, there will be funds available for the next child that needs help. The Charity has said that they will confirm whether they can support us early next week.
Thursday, 24 May 2012
Monday, 21 May 2012
A bit about our fundraising:
In Portsmouth on the 10th June Alex and Ben Keyte have arranged a family fun day in aid of Ryan's appeal. They have never met us or Ryan but have been so touched by his story after hearing about him from his Auntie Vicki (Gareth's sister) that they have given up hours of their spare time organising their event. Alex is Vicki's hairdresser. I appreciate that most people that read this blog do not live near Portsmouth but in addition to arranging a fun day they are also having an auction. The items for auction are incredible and there is no reason why anyone needs to miss out as they intend to accept e-mail bids for the items on offer. Full details of the auction are on the poster and events page but include:
- Signed Manchester United Football with certificate of authenticity (COA)
- Signed Steven Gerrard photo with COA
- Signed Arsenal Team photo with COA
- Signed Leon Spinks Boxing glove with COA
- Signed Amir Khan Boxing Gloves with Letter
I have added details of the auction to the events page and also added a poster to the Downloads page in the hope that you might print it and display it at work or anywhere that it would get notice by the right audience.
To read an article about Alex that appeared in the local paper in Portsmouth click here. Thank You to both of you, Alex and Ben, for everything you are doing to help Ryan.
Sunday, 20 May 2012
But we have done a good job of keeping busy! Ryan is well, yesterday he went on his motorbike again and came off a couple times as he is getting a bit too confident! He is unscathed though thank goodness. Today he cycled for several miles to Exeter quayside where he watched some mountain bike stunts and free-runners - right up his street! He also saw a glimpse of the Olympic flame runner but was very unimpressed!
Tuesday, 15 May 2012
Thursday, 10 May 2012
The sun shone for our Great West Runners; Claire Channing who ran the half marathon and for Gary, Andrew and Alan Hayes who ran the 5K. Between them they raised a total of £677.93. There is a photo of the Hayes family runners in action on the events page. There is also an update from Kate and Alice Butler who, with a team of 16 friends and family, raised a massive £1,047 by completing their 9 mile sponsored walk.
Tomorrow night there is a karaoke and sponsored waxing at the Royal Oak at Nadderwater and this weekend there is Zumba for Ryan. All abilities are welcome, don't worry if you haven't done Zumba before - now is your chance to give it a try. Registration for the event is from 1.30 at Walter Daw School, Woodwater Road.
Also on Saturday is the Pig Racing at the Jubilee Club at Pinhoe - the first race starts at 8pm. Full details of all these events can be found on the events page. There are lots of new events listed and lots more sponsored events on the justgiving team page - Thank you to everyone who is organising a sponsored event for Ryan, we really do appreciate it.
Good Luck to Charlotte and Buster who are doing their sky dive for Ryan this weekend. They have smashed their target of £1,000 and have so far raised a total of £1,454 between the two of them.
Tuesday, 8 May 2012
In his usual style Ryan didn't admit to being tired and still wanted to go out on his motorbike, so yesterday afternoon he met up with Jack in a wet muddy field. Both boys found the conditions harder than last time but still had fun.
His blood counts didn't fall much more and today his neutrophils were 1.5 and so he has started his second cycle of chemotherapy. Fingers crossed he tolerates it as well as last time.
Saturday, 5 May 2012
However at 4pm when we were packed and getting picked up his cheeks were glowing again so I checked his temperature and is was 38.3. He was therefore admitted to hospital and started on IV antibiotics. Which means a minimum of 48 hour stay in hospital. He was upset at the time, as he was meant to be seeing his mate Adam and family this weekend, but we have assured him, and Adam, that we will get together as soon as possible.
In himself he is tired but ok, we have his beloved wii and he is re-discovering his games as he has been playing the x-box at home lately. (he does have a half hour time limit at home though!) His chest sounds tight and congested and he has a bit of a snuffy nose but if his temperature stays down he can come home Sunday night. He cheered up when his good friend Josh came to visit and the two of them were soon laughing and joking and playing games on the wii.
He is due to start chemo Monday but it has been delayed to Tuesday due to the bank holiday. But if his blood counts don't recover it will be delayed until he is not neutropenic (neutropenic means you have no means of fighting infection as your white blood count is low)
Ryan is hoping for a speedy recovery as he is hoping for another go on his motorbike on Monday apparently!
Thursday, 3 May 2012
Dan's full body wax is now on YouTube! If you want to share his pain click here. It brought tears to my eyes and not just because of the pain but because Dan did this for Ryan :-)
You can find this link again and a write up by Vicky, Dan's wife, on the events page. Dan is so close to hitting his target of £2,500 and is sure to do so after the event is seen in today's Echo - to view the article on-line click here.
Wear Red for Ryan day has so far raised over £1,100 but money is still coming in. Money has also been added to Ryan's main justgiving page and I have been sent some great photo's which I will be adding to the bottom on the Events page.
There are updates on several of the events that have taken place on the Events page. I have also added a link to Gareth's YouTube channel on the right on the screen.
Finally Good Luck to Gary, Andrew and Alan Hayes and Claire Channing who are all running the 5K Great West Run for Ryan on Sunday 6th May.