john evans
Running London for Seth
Fundraising for Anthony Nolan
Story
I will be running the Flora London Marathon on 26th April 2009.
I am running for the Anthony Nolan Trust again this year but this time it's especially for Seth Mills who has leaukaemia.
Seth is just 3 years old and is doing really well but he needs some help, and your dosh will go a long way towards helping.
So, my next 16 weeks will be consumed with training, limiting the alcohol intake .... some of the time ... and eating 'sensibly', just so that I can keep my suffering to less than four hours or if it goes to plan just under 3 hours and 45 minutes , hopefully ..... and that's not really too much of a sacrifice.
Thanks for visiting my fundraising page, and give as much as you can!
Donating through Justgiving is quick, easy and totally secure. It’s also the most efficient way to sponsor me: Anthony Nolan Trust gets your money faster and, if you’re a UK taxpayer, Justgiving makes sure 25% in Gift Aid, plus a 3% supplement, are added to your donation.
So please sponsor me now!
If you don't feel that you can give some cash or even if you can and want to help more, please consider becoming a bone marrow donor - it's worth even more and will not cost you a penny.
You can find details by visiting the Anthony Nolan Trust website on here www.anthonynolan.org.uk/donating/
If you want to follow my progress on the day you can get live updates by sending a text saying 'RUN' to 83040. You'll get a link back where you enter in my number which is 28949. You then should get a text with my times at 10K , half way , 30K and the end.
I am kind of aiming for a sub 4 hour depending on the heat, so it should be about an hour difference for each of the above.
Update from Nathan (Seth's dad) on 25th February 2009
Hello John
We are now into the second Chemotherapy.The effects take place over a 28 day cycle so it is a tough month ahead. We are obviously worried about the effects of it in the longer term too. [PS For the Pharmacist in you he is having Fludarabine and Cytosine at high dose and GCSF to drive myloid cell production, he is supposed with nosinan, ondanzatron to stop sickness and co trixomole, voriconazole, aciclivor to stop infection while he is immuno suppressed].
The next one is the transplant, dates are dependent on his recovery from this Chemotherapy, but it probably will be April, most likely we be watching the marathon from his bedside. It will take place at St James and take around six weeks, all of that time is in isolation. Assuming he makes it through the transplant they are giving him a 50/50 chance of beating the cancer.
Needless to say we are pretty scared.
I am happy for you to do what you think is right to raise as much money and new donors as possible.
Nath
27th February 2009
I suppose the context to the drugs is that they are treating a very rare cancer, Acute Myloid Leukaemia is not often seen in children, predominantly it is an old persons disease.
While my instinct tells me to deal with this horrid thing privately, please do what you think is right with the mail to influence new donors to register, they are so much needed by so many families around the world. Being a donor is such a special gift and really is painless, plus many businesses [including ASDA] will give someone time off to do it. It is also worth saying at this point that we don't actually have a donor for him, the stem cells for the transplant will be taken from an umbilical cord from Italy where it is more common to store them for later use - a living donor would have been great as it gives us more options.
Update from Nathan 1st April 2009
We got the results back from an operation he had last week to check progress, it looks like the chemo has done a good job and the cancer is being held at bay. As he has made a good recovery from the chemo the Doctors are keen to progress with the transplant before it has a chance to come back. We were back in hospital on Momday for a full day of tests and it looks like we will start with the conditioning [removal of his bone marrow] today, assuming the donor cells arrive ok and in time.
We have been worrying about the total body irradiation that was planned for him as part of the conditioning. It has horrible side effects in the long and short term, but some good news, data from Germany and the US is showing that it is not giving any better results than with just chemo alone. Seth will be the first AML in Leeds not to have TBI. The chemo they will use however is still going to be pretty awful and it remains a high risk procedure.
They have found a few problems with the Italian cord stem cells and the German one will now be used for the transplant. The actual transplant will happen on Easter Saturday. After that we don't know what will happen. We understand that it will take around 6-8 weeks for the new stem cells to engraft and multiply to become his new bone marrow. While they do that there is a battle that goes on where the graft [new stem cells] attack the host's system, this can have horrific side effects but is also necessary to attack any remaining cancerous cells. Obviously the graft might not take and then we are really stuck, having to put back the stem cells harvested some time ago, most probably with some cancerous cells among them.
At the end of the transplant we have been told that there is a 50/50 chance of beating the cancer.
From the start of the procedure he'll be in isolation, but we have a computer in the room to stay in touch with the outside world and Kirsten and I will do alternate nights to give each other a break.
Update from Nathan 3rd April 2009
I found out a few days ago that the ANT had found the cord for Seth, so what you are doing is directly helping him. Transplant day is Easter Saturday.
I'm sat by his bed at the moment, watching the chemo going in. It is heart breaking to know what it will do to him, but it has to happen.
Take Care
Nathan
Update from Nathan 12th April 2009
Transplant was yesterday at 2pm. 25mls of cord blood were infused in less than 6 minutes.
It's is frightening to think that if all goes well that 25ml will make his blood for the rest of his life. I know that the ANT were involved in getting the cord over from Dusseldorf Cord Blood Bank.
To clear space in his bone marrow for the new cells, he has been given very high does chemo. It is starting to really hurt him, he has a very sore mouth and gut. The pain killers make him very sleepy. They have had to start feeding him through a tube and he has lots of anti rejection drugs to cope with as well.
We are now waiting for the new cells to find their way to the bone marrow and start growing. This can take up to 60 days, until then he'll remain pretty ill and at risk.
At the moment we have a lot to hope for, so we can cope with it all.
It's is frightening to think that if all goes well that 25ml will make his blood for the rest of his life. I know that the ANT were involved in getting the cord over from Dusseldorf Cord Blood Bank.
To clear space in his bone marrow for the new cells, he has been given very high does chemo. It is starting to really hurt him, he has a very sore mouth and gut. The pain killers make him very sleepy. They have had to start feeding him through a tube and he has lots of anti rejection drugs to cope with as well.
We are now waiting for the new cells to find their way to the bone marrow and start growing. This can take up to 60 days, until then he'll remain pretty ill and at risk.
At the moment we have a lot to hope for, so we can cope with it all.
Update from Nathan 22 April 2009
His first 10 days of conditioning chemo was pretty bearable, we have our own room in isolation and he was exceptionally well through it. On the day of transplant [day 0, Easter Saturday] he was also fine.
However since then we have had the most awful time and we have been told to expect worse to come. The chemo he had was really tough and has hit him hard. It's primary job was to remove all of his bone marrow, it means that he has no ability to make his own blood and therefore no immune system. The main side effect is that his GI tract is ulcerated from mouth to bum. It is causing him a lot of pain and causing him to pooh green gunk every 20 minutes. The ulcers are allowing bacteria which naturally occurs in the stomach to break through into his blood stream, because he has no immune system it effectively is running riot and causing him fevers of 40c. They are treating this with strong antibiotics and as they also think he has a fungal infection, anti fungal drugs too. He started being fed through a tube and has now moved to being fed through a drip. He is on lots of pain killers, including morphine through a constant drip. Last night we feared his gut has perforated, but the xrays they took showed not. We have a CT scan under general anesthetic tomorrow to confirm this as well as check his liver, kidneys, lungs and spleen.
He is on a huge cocktail of other anti rejection and prophylactic drugs, plus having lots of blood transfusions. His drip stand is like a Christmas Tree, there are over 6 pumps running to get all the stuff into him.
We are not sure what has caused it but he is covered in a rash head to toe, it might be caused by the chemo, one of the drugs or something to do with the stem cells. It is really itchy an causing him more agony.
We had to cut his hair off today to stop it falling everywhere, as it was last time, it was just heart breaking, a real symbol of what we are doing to him.
It is day +10 of the transplant today, we are waiting to see new blood cells being generated by the stem cells which have been put in him. Nothing yet, it can take many weeks for them to start, especially when from a cord. They may not start which is a disaster scenario for us. The other disaster scenario is that when they do come up, they are from his old bone marrow and with cancer cells amongst them. What we ideally want is that when they do come up, they will destroy any of his remaining old cells, including the cancerous ones. This battle inside him can cause more horrendous side effects, but needs to happen to beat the cancer. All this stress is to come.
However since then we have had the most awful time and we have been told to expect worse to come. The chemo he had was really tough and has hit him hard. It's primary job was to remove all of his bone marrow, it means that he has no ability to make his own blood and therefore no immune system. The main side effect is that his GI tract is ulcerated from mouth to bum. It is causing him a lot of pain and causing him to pooh green gunk every 20 minutes. The ulcers are allowing bacteria which naturally occurs in the stomach to break through into his blood stream, because he has no immune system it effectively is running riot and causing him fevers of 40c. They are treating this with strong antibiotics and as they also think he has a fungal infection, anti fungal drugs too. He started being fed through a tube and has now moved to being fed through a drip. He is on lots of pain killers, including morphine through a constant drip. Last night we feared his gut has perforated, but the xrays they took showed not. We have a CT scan under general anesthetic tomorrow to confirm this as well as check his liver, kidneys, lungs and spleen.
He is on a huge cocktail of other anti rejection and prophylactic drugs, plus having lots of blood transfusions. His drip stand is like a Christmas Tree, there are over 6 pumps running to get all the stuff into him.
We are not sure what has caused it but he is covered in a rash head to toe, it might be caused by the chemo, one of the drugs or something to do with the stem cells. It is really itchy an causing him more agony.
We had to cut his hair off today to stop it falling everywhere, as it was last time, it was just heart breaking, a real symbol of what we are doing to him.
It is day +10 of the transplant today, we are waiting to see new blood cells being generated by the stem cells which have been put in him. Nothing yet, it can take many weeks for them to start, especially when from a cord. They may not start which is a disaster scenario for us. The other disaster scenario is that when they do come up, they are from his old bone marrow and with cancer cells amongst them. What we ideally want is that when they do come up, they will destroy any of his remaining old cells, including the cancerous ones. This battle inside him can cause more horrendous side effects, but needs to happen to beat the cancer. All this stress is to come.
Update from Nathan 6th May
John
Hope the legs have recovered. Your picture is Seth's screen saver in the room.
Since the last update I sent he has made progress recovering from the chemo. The burning on his skin is easing, his gut is healing and they have stopped feeding him through an IV line. His infections and resulting temperature are now starting to come under control too. He is still however being fed through a tube into his tummy and his blood chemistry is still not right so he is on a long list of supplements. He also gets a blood transfusion every other day.
To help the new stem cells that produce the blood 'settle in' he has a lot of anti rejection drugs, one of them was causing the really bad rash all over his body so it has been changed to a steroid, it is causing a few headaches in that he has a foul temper with it and high blood pressure.
We are starting to see some Graft V Host disease as the new cells engraft (settle in), it is manageable and desirable at the moment as it indicates that there is Graft V Leukaemia going on too. ie any remaining cancer cells from Seth's blood are also being attacked and destroyed by the new cells. However, it can become chronic so we are watching carefully.
One piece of stop press news for you, I have just been told by the consultant who has been looking at the DNA of the small number of blood cells that have been produced that they are 100% donor. That is really good news as it means it is likely that the old bone marrow has been successfully removed and while it is no guarantee, it improves the chance of the cancer having gone too.
We are still in isolation at St James.
Thanks again for doing the run.
Nath