Ryan's story

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.

Saturday, 26 May 2012

Better news than we could ever have hoped for....


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.

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