Dylan went to hospital Thursday and needed a platelet transfusion. Currently Dylan has no access as he is in between having his broviac removed and replaced with a medi-port. So Dylan had to have an IV placed into his arm and boy did that hurt. He was so brave though, he knew it had to be done and he refuse to have the numbing cream, he just wanted it over and done with. After the transfusion the IV was removed and we went back to the Ronald McDonald House. Dylan’s weight is maintaining t around 16kg, and we are pleased about that. GCSF injections have stopped but he is still suffering with leg and foot pain. On Tuesday we will return to hospital for a check up and pre surgery exam, then on Wednesday he will have an anesthetic to have the medi-port put in place. We appeared on E news last night for a short interview, but I was unhappy that they edited most of the things I said about Neuroblastoma and the bigger picture of pediatric cancer, I was also upset that they did not display his website address. We have an interview scheduled on Sunday with the “Today Show” for channel nine in Australia and on Monday with “The Insider”. I am not sure how motivated Dylan is about the interviews, he seems to be picking up on my anxieties of dealing with the media. It’s not that I dislike the media attention, on the contrary, the media is exactly what the Neuroblastoma world needs. I am just very frustrated with all the editing and errors they do when I am trying to save other children’s lives by making people aware about Neuroblastoma and the problems that families are faced with. All the attention about Nicole and Angelina’s visits is great but all the publicity it is generating should have something worthwhile come of it. There are many children in different parts of the world who have Neuroblastoma, and these families are faced with the heart ache of knowing there is no cure for Neuroblastoma. Then after exhausting all avenues in their own countries, some learn about MSKCC and all the clinical trials they offer. Dylan is the lucky one, Dylan is here and getting the best treatment in the world to try and help him recover, and I am experiencing a sense of guilt, maybe that’s not the right word but I can’t describe it. It sickens me to think of all the children who are dying of Neuroblastoma back home and in other parts of the world that may have benefited from a clinical trial. I know MSKCC doesn’t have a cure, but they do have many trials available that no one else can offer and for that reason they also have the highest success rate for getting these children into remission. The Australian Government decided that Dylan’s chance of a successful outcome was not high enough for them to grant him any funding for treatment abroad, this may be true, but if there is even a 1 percent chance of a new treatment working, doesn’t every child deserve that chance, that opportunity? In Dylan’s case, surgery was refused in Australia and without it he would have died in as little as 2 months, but due to the generosity of the Australian public, Dylan was able to get to New York and have the surgery, which is the only reason he is still alive today. Dylan has a quality of life and is still alive to try the trials on offer in an attempt to rid the cancer that remains in his bones. Let me ask a question to every parent out there, if your child gets sick with a life threatening illness and you can only get that treatment overseas and you don’t have half a million dollars to pay for it, what are you going to do? The government won’t help you, no insurance cover will cater for overseas treatment and it can happen to anyone, it happened to me, and I never thought it would. Currently I know of a child in the UK struggling to raise the fund to get to MSKCC and another in France is trying to get their campaign off the ground. I have met another family from the UK who arrived in New York 2 weeks ago after a huge fund raising effort to get here. There is also a family here from Hong Kong who did the same thing. These are not poor countries, yet they cannot fund a small minority of children who need these treatments. Not all children with Neuroblastoma need to come to MSKCC as some respond well to the usual chemotherapy protocols, but there are others, such as Dylan, who are classed as refractory or have relapsed and no longer respond to chemotherapy which is all that the standard protocols can offer. The simple matter is that Neuroblastoma has little funding and as a result, little research. MSKCC in America is the only hospital in the world who are leading the way with research and treatments for this cancer. They have an entire Neuroblastoma team, some who have dedicated their career to Neuroblastoma for over 20 years. Take this link to see Publications written by Dr Cheung on 3F8 monoclonal antibodies from as early as 1985. There is a lot more issues on this subject, which would take a very long journal entry to address. What I want to do is create a type of mission statement from the Dylan Hartung Campaign combined with Team Continuum and once this has been done, I will provide a link to the issues we would like to address to the governments and health ministers and hopefully make a difference to many families of children with life threatening illnesses needing treatment abroad.
Thank you everyone who continues to support us. Thank you for all your inspirational guest book entries and emails, they keep us strong.
