He is now 8, is in his 3rd complete remission and enjoying being a 'normal' boy, and doing all the things that normal boys do. We are happy to share Ryan's treatment experiences with anyone that would like to know the detail, if it can help with decisions you are facing. You can contact us via our facebook page using the link on the right of this page.
Treatment update 6th October 2012
Ryan continued to react to ATG with high fevers and low pulse but once that phase of conditioning was complete we were surprised at how well he tolerated the chemotherapy phase of the treatment. It was not until Ryan received Melphalan that we was actually sick, the supportive care during treatment is excellent and so anti-sickness are given routinely, however if the children are sick additional drugs can be added to try and stop the sickness and in Ryan's case we opted for a continuous infusion and it worked really well and the sickness did not reoccur.
My stem cells were collected on Day -1 and I was fortunate in that enough stem cells were collected in the first 6 hours and so I did not need to have the procedure repeated the following day. In fact 23,000 stem cells were collected and 10,000 is the figure they are hoping to collect over the two days. The stem cells are processed in a lab and given to Ryan fresh the next day, Day 0. We were told that between 30-50% of the stem cells are lost during processing but in Ryan's case he received 18,000 stem cells which is a huge amount.
At this point in the treatment Ryan was still eating and drinking well, he had no signs of mucusitus and looked great. He had been active and happy throughtout the conditioning treatment. This is such a huge contrast to the condition he was in at this point in treatment for his auto-logos transplant in 2008.
By Day +3 Ryan showed signs of developing a sore mouth and throat but said he didn't need any pain relief. TPN (IV nutrition) is started on day +1 and so there was no longer any pressure in him to eat
although he continued eating small amounts until Day +5. During the next week he was less active and felt tired but still happy to see the play lady, teacher and physiotherapist that all came to see him day sine he was admitted.
The care that he received in the KMT ward was excellent, in every aspect. The nurses were experienced and knowledgeable about treatment and had more authority that the nurses are permitted in England for example they are able to increase morphine the minute the patient experiences pain without having to wait for the authority of a doctor. The doctors were friendly, extremely knowledgable and reassuring and we all had a great relationship with everybody on the ward. If you
are reading this information because you are considering this treatment please don't hesitate to get in touch if you would like more detailed information of Ryan's experience, we know that all children are different but knowing someone else that has had a positive experience is always a good thing. We can be reached at firstname.lastname@example.org
On Day +8 Ryan spiked a temperature which persisted, routine anti-biotics were given but no evidence of infection was found and his CRP was unremarkable. After thorough investigation the doctors confirmed that Ryan was experiencing prolonged engraftment syndrome, which meant that his body was reacting to the new stem cells and so they started him on a steroid to suppress his body's reaction. At the same time we were told that in all other respect Ryan was doing extremely well and
would be moved into the oncology ward while his temperature stabilised and he withdrew from morphine. We were assured that we would have our own room but at the last minute that did not materialise and so after much negoiation we pushed for Ryan to spend the nights at the parents house and the days in a shared room wearing his mask. With continued pushing by us his withdrawal from morphine was expedited and his transition to oral mediation was done at a faster rate that normal and we are hoping to be discharged tomorrow, Day +19.
Treatment update 9th September 2012
Ryan has been admitted to the KMT Unit in Station 16 of University Children's Hospital, Tubingen. He has settled in his room in isolation which will be his home for the next 8-12+ weeks. His treatment started with a a test dose of ATG which is used to destroy Ryan's T cells in preparation for the transplant, providing the test dose does not cause severe problems Ryan will then receive 3 days of the drug at full dose. The main side effect of his is severe allergic reactions ranging from high fever, to heart and breathing problems. On the test dose and first full dose of ATG Ryan did experience high fevers, high pulse and low blood pressure and was in need of platelet and blood transfusions but after this the side effects improved. Treatment starts on Day -12 and counts down to Day 0 being the day that Ryan receives my stem cells.
Treatment update 20th August 2012
Ryan underwent a multitude of tests and investigations in preparation for the haply-identical transplant and with the exception of an MIBG scan all were kindly performed by our local hospital in Exeter who bent over backwards to do these tests in a way that kept Ryan out of hospital as much as possible during his last weeks before travelling to Germany.
The scans confirmed that Ryan remained in full remission, his bone marrow was received and processed in Vienna and that is also completely clear. This puts Ryan in the best possible position for the treatment ahead.
We received communication from the consultant in Tubingen that there was to be a change of plan and I was to be the donor of stem cells instead of Gareth, despite the fact that I had anti-bodies to a virus in my blood. The reason for this was that I am a 7-8/10 match to Ryan's bone marrow whereas parents are usually approx 5/10 and this may reduce the chance of Ryan's body rejecting my stem cells. I will start a 5 days course of injections on the 13th -17th September in preparation for the stem cell harvest.
There will be a period of time that Ryan will have no treatment before travelling to Germany and in that time we hope to keep him fit and well.
On the 16th May Ryan had an MIBG scan at Bristol Children’s Hospital; this involves him being injected with a radioactive dye the day before the scan and then lying under a scanner without moving for approximately an hour. There are 4 or 5 images taken and each one takes 10 minutes so he can stretch briefly between images but it is still a long time.
Treatment update 30th April 2012