It’s time to announce the second biggest decision we have had to make, the first being to come to America for Dylan’s treatment. We have made the decision to return to Australia by the end of the year or a little earlier. This decision was not taken lightly and we have weighed out all the pros and cons of such a decision. I will attempt to explain it all as best I can. Everyone we have told and discussed this with so far has been very supportive and agrees completely with our decision.
Why we came to America for Dylan’s treatment in 2005
Dylan was 5 years old when he was first diagnosed with cancer, after 3 rounds of chemo, we were told that there was no more they could do and that they would not do surgery to remove the huge solid tumor in his abdomen that was wrapped around his aorta and straggling him from the inside. The reason they gave was because after surgery they had nothing to offer him for treatment for the cancer that was still in his bones, and that surgery would be a waste of time. We were told he had 2 -12 months to live, take him home and love him. After research we discovered MSKCC in New York who agreed to do surgery and that they had many clinical trials on offer after the surgery. Dylan had a successful removal of his entire tumor in February 2005. Dylan was 6 years old, and apart from long hospital stays, he was a happy kid who found enjoyment out of toys and celebrity visits, media interviews and the activities at the Ronald McDonald House. Dylan has done a total of 15 rounds of chemo, radiation, 9 clinical studies and various other drugs such as Accutane, Celebrex & Thalidamide.
How life is now that Dylan is 13 years old
Dylan is now 13 years old, and his disease remains the same…Stable. This is something that we did not anticipate, nor the doctors either in Australia, or America anticipated. We thought that Dylan would either die in a few years or be cured. By the end of 2012 Dylan will be 14 years old and we will have been here almost 8 years. Dylan has not been on any treatment for months and is doing great. We waited for hot 3F8 that was supposed to be “the one” and then we waited for the humanized 3F8 another one that was supposed to be “the one” and his body continues to reject that treatment. There are no treatments that appear to be having a huge positive impact on children with Neuroblastoma who are HAMA & HAHA positive. We continue to follow treatments being done elsewhere and do not find any that would benefit Dylan right now. We are waiting for something that does not exist yet…a cure that works for Dylan. Some children these treatments have worked for, and many remain NED, or they did not work for them, and they have passed away. Dylan is in limbo and has been for many, many years. Dylan’s treatment is not only medical but also quality of life, especially if his life expectancy is short. Nobody knows when Dylan will progress, ever though progression of disease is anticipated and his chances of a full life is extremely slim. Dylan has been stable for 7 years, yes we had a few scares, but his urine markers have never raised and progression was out ruled in those cases. Dylan’s quality of life over the past few years has not been the way we like it to be. He stays in his room and plays playstation and sleeps. He does an hour a day of home schooling and has only internet friends. We never have any money to do anything when we are not at work and he is too old now for toys to bring a smile to his face. Dylan’s needs have changed. He is a teenager now. We feel that if we returned home our lives would be very different and Dylan’s quality of life would be much better. In Australia we will have a car, and we can travel to the beach, to the country, to friends and family. Dylan will have his cousins and his grandparents. We as a family will have more money to do things and be able to provide Dylan with the life we want him to have.
The reality of Dylan’s cancer
If Dylan progresses tomorrow, MSKCC will only have to offer us high dose chemo known as ICE. He will use his last bag of stem cells and he will be very sick. If his disease progresses rapidly, the chemo will only buy a few months. We do not know if that's how we would want Dylan to spend his last months. If Dylan progressed a week after returning to Australia, we could still do high dose chemo to buy a few months or we could be surrounded by friends and family, and be home. In saying this, Dylan may remain stable for 2 more years, or ten more or even fifty more. We just do not know and neither do the doctors. We are living with the “what if’s” and have been living like this for way too long. What if Dylan progresses, what if Dylan stays stable, what if we cannot get back into America if we leave, what if I get hit by a bus tomorrow, we just cannot live like this any longer.In Australia we will live instead of exist. Why exist if you do not live your life. There is no point on Dylan having these extra years if he cannot live them. We asked Dylan if he wanted to go home. His response was “I thought I had to be in America to live” we replied that he used to have to be, he had to come here or he would have died. But now he can be alive in America or Australia because there is no more treatment here for a cure and if we wait for a new treatment, it could be years, and if a “cure” is found, we will move heaven and Earth to get him back here to have it. He replied “Hell yeah I wanna go home” I wanna go to Queensland, the family vacation we planned before I got sick and we will be able to do so much more things like Phillip Island, I wanna see the penguins again! I wanna see Nana, Gran and Pop and Uncle Rick and I wanna have a backyard. We told him by the end of the year we plan to leave and later that night he came to us and asked if we could go home sooner!
Did we stay too long? No we do not feel like we have. We had to give it a go for as long as we could and on an average Dylan has done more than one clinical trial a year to try and find the cure. But when is enough, enough. Do we do this for the next ten years? I always tell people who come to me for advice to follow their heart and their gut instincts, and now we have to take our own advice. We do feel this is the right decision, in our heart of hearts. We are going home on our terms, not because we have been told to, not because Dylan has died and not because the hospital recommends it…it is our decision and we have finally made it. Over the years we have seen many international families do the same as we have, and travel to MSKCC for their child’s treatment. Many of those children died, some were cured and went home, and others like Dylan went home with stable disease and continue their lives at “home”. We feel we have more than tried EVERYTHING possible and given it our best shot. It’s now our turn to go home and “live” and we are so grateful that we are doing this with Dylan and not taking him home to bury.
We have some concerns about where we will have Dylan’s basic medical needs tended to. We are not comfortable with the oncology team at the hospital in Australia he was diagnosed at. But there are other options we are exploring. We will just continue with his supplements and have scans done every 4 months or so to see where we are at. We are unsure about whether we will be able to return to the USA due to the complex visa laws, however I do believe in my heart that we can jump those hurdles and maybe return once a year for scans at MSKCC and stay a few weeks and return home like other international families do. We also have so many dear friends we want to visit and just love our oncology team at MSKCC and will want to see them. We will not have the financial hurdles to return, since we had health insurance that has finalized any debt at MSKCC now. We also have funds still in the Dylan Hartung Fund that will cover the costs of scans at MSKCC and any treatment we may want to do. In saying this, we will only do more treatment if it already has shown to make a huge difference to patients, Dylan has done his share of jumping on new clinical studies, now we will watch and wait from Australia.
Are we giving up?
No, we know one day a cure will be found, but we do not know when. Everything IS Possible, it’s possible Dylan will continue to be stable for many many years, it is also possible he may be called to heaven in a few years. We are victorious, we had a 5 year old with 2 – 12 months to live. Now we have a 13 year old with stable disease and an unknown life span. We set out to save our son by going overseas, and we have done just that, we still have him. We may not have him cured but he is here and he is generally well. He does suffer some fatigue, have some hearing loss, bad teeth, short stature and some occasional leg pain, but they are small prices to pay to still have your life. Now he has to LIVE it.
I have to say that I truly do have the most amazing 17 year old in the world. I am so proud of the man he is becoming and could not have ever wished for a better son. As a parent we always question our parenting skills and if Cain is any example, then we know we did a great job. We knew that this decision was going to hit Cain the hardest. He is established here and is the only one out of all of us that actually has a life he is living. We dreaded telling him, we even held it back until after his service club travels with school to Alabama & Tennessee because we did not want to spoil his trip. To ease the burden, we decided to let Cain make his own decision. We explored the idea of him asking his godparents in Long Island if he could stay with them until he finishes his high school diploma in 2013. We did not ask them until we told Cain to see if that was an option he wanted to pursue. For us leaving Cain behind would crush us, but he is almost 18 and in Australia you’re an adult, and we were making huge decisions when we were 18. The day after his trip he went to rehearsal and on his return we sat down with him after dinner. I had made a pros and cons list for him to look at after we explained the decision and why we have made it. After a while of us explaining everything his eyes glazed over, and he gestured for us to stop talking and he began to speak. He said that he completely agreed with our decision and that Dylan is not living his life with quality. He said that through everything we have been his rocks and he has done so well because he wants us to be proud. He said music is his life and that he has done so well at it because of us. We all cried and told him how so amazingly proud we are of him and even though we would be heartbroken to not be with him, we want him to do what he wants to do, he deserves this choice. He said that he came to this country not knowing we would be here this long and he also knew that eventually we would go home with whatever outcome it may be. I handed him the pros and cons list of staying here a year longer without us and he pushed them away saying we came as a family and we leave as a family, that if anything ever happened to Dylan while he was not with him, he would never forgive himself. After more tears he went for a walk. It’s been a week now and he is doing better with the decision. He told me his teacher cried when he told him, and that his girlfriend is crushed. We have always told Cain that planning for his future here is hard and that at any given time we may leave, there may come a time when our visas are not approved or when Dylan’s medical condition changes. He is so smart and wise, and it’s so hard for him, but he knows that he will have a life back home and that he can return to the USA for his music career if he aspires to. He can audition for the College of the Arts in Australia and apply for scholarships to continue music schooling in the USA if he so wishes. Music is his life, and I believe that if you want to do something or you want to become the best your possibly can, then you will, whether you’re in America, China, Italy, Australia or Timbucktoo! The music world opportunities are definitely better in America, but there is no reason why he cannot continue his music career in Australia and return one day.
We are staying until the end of the year because of our rental lease and because we want Cain to have another summer at music camp. We also want him to finish the 11th school year. We also need to pay off our debts and gather Dylan’s medical records. We will only be bringing our personal belongings back, the cost of shipping furniture would be more than buying it at home. We of course no longer have a home…we lost it and our furniture, but will have a couple of plans in the pipeline on staying with friends and eventually renting a place to call home. It will take time but we will get there eventually. We have employment lined up and once we get cars we can start working. The trick is to get money to buy the cars to go to work LOL, or the job to get a loan to buy the car. We will iron out those details and soon be on our feet, after all, we are Hartung’s and we have amazing friends and family anxiously awaiting our return. We will miss New York and the friends we have made who have become part of our family. I am sure my future journal entries will reflect that.
I know this will spark many comments, emails and so on. Bare with me when it comes to replying :) Oh speaking of Bear, yes he will be coming home with us, of course! We cannot live without our Boo Boo Bear.