After a lot of research and looking into options at CHOP in Philadelphia, we have made the difficult decision to go with the study offered at MSKCC that involves chemotherapy. It was a hard choice to make because we just didn't want to go down the chemo road again with only one bag of stem cells left and since we were unable to harvest anymore, it means that if they are used, then further options become even slimmer. The study is a Phase 1 protein targeted therapy with two drugs Vorinostat and Etoposide (chemo) otherwise known as VP-16. In a nutshell, the aim is that the Vorinostat opens up the cancer cell after approx a four hour window, then the chemo is given...the door shuts and it destroys the cancer cell. Once the cancer cell is dead, then the body will just absorb the cell after a period of time, and then spots in scans clear up. All studies sound great in theory, but they are just that...studies. We try and see if it works, hopefully one day one will and it will be the end of Neuroblastoma killing our kids. The drug Vorinostat is approved for the use in Adults with great results, lab results on mice show a great response in Neuroblastoma cells, so the study is to see if it works on children with different cancers, and Neuroblastoma is one of them. The doctor heading the trial hopes that the side effects will be minimal but Etoposide (chemo) is a drug that Dylan has had in the past at a larger dose, so we know that he is likely to suffer from nausea, vomiting, counts dropping and hair loss, but there is a small chance he might tolerate this smaller dose better. Vorinostat will be given as a capsule by mouth once a day for 4 days, then the chemo will be on day 3 for 2 days...I think...from memory of the discussion with the doctor. Then Dylan will get 3 weeks off and that completes 1 cycle. In the 3 weeks off, he will need several blood drawings to check different levels of not only the drugs, but also his counts. If he becomes neutropenic (no immune system) then he will be given GCSF injections to hopefully bring them back up again, if he gets a fever while neutropenic then he will of course be hospitalized until they come up. The good thing is that the chemo can be delivered by a peripheral line (regular catheter in the arm) which means he will not be at the usual risk of a line infection during neutropenia. Dylan's only concern...hair loss. Let's hope he falls into the category of kids who do not experience the side effects and he gets to keep his hair. Dylan will have scans next week as the pre-trial work up that is required, then treatment will start on the 2nd of May. The good news is that Dylan gets a mini vacation before he starts all this treatment, he has been kind of bummed out lately, so this will do him the world of good. Dylan leaves for Florida with a friend of ours for 4 nights. Our friend has family meeting up for Easter break and they have a wonderful condo by the beach with a pool and there will be lots of kids of various ages there to play with. Dylan is so excited, and can't wait to spend the next 4 days in the pool! Cain just got back from a school trip to New Orleans for 3 days, as part of his Service club work that he does each week feeding the homeless, doing community services etc. He had such a wonderful time and even got a steam boat ride along the Mississippi river! Tim and I were so pleased that each of the boys were able to have mini vacations, we are unable to afford a family vacation, nor get the time off work, so this was perfect, they both get to have some much needed fun and time to recoup...without us having to figure out how to afford it. Little miracles happen all the time, just when they are needed I guess. Not many people know but Cain is having concerns about his own health right now. It started with a routine check at the doctors for some health certificates to be filled out, one for school and one for The Ronald House to be a volunteer for the summer camp this year. We left the doctors office with 5 referrals to specialists! We are waiting to see a particular specialist at the end of May, so until then I am not going to go into detail, let's just say if he does have what they think he has, it has no cure (of course!) but he can continue to live a long life provided he takes the necessary life saving precautions and restricts his lifestyle. Yes, another blow and mountain of stress on our minds, lets pray that the doctors are wrong and the specialist tells us he is fine. I tell ya, I hate seeing doctors! I am due to go myself but have to get the kids medical stuff done first...to be honest, I don't really want to go because I am scared of what they might tell me! Coming up in May, the boys have the annual concert playing at Carnegie Hall and at the Ronald McDonald House Annual Gala at the Waldorf Astoria. Cain also has a recording studio date to record "his" own original music along with the New York Pops as his back up! Cain's passion for music grows further each and everyday and we thank the Ronald McDonald House and the New York Pops for their continued support for Cain to pursue his dreams. He is also scheduled for 4 weeks at the Summer Music Camp on a scholarship again this year. If your wondering why I have put a photo of Cain in Dylan's journal instead of Dylan, it's because Dylan refuses to let me take photos of him lately. Hopefully he will bring home some from Florida, I am sending him with a camera with the hope that he does.
Please pray for one of my very special Neuroblastoma fighters, Mason. He is about to embark on more treatment at MSKCC and he really needs this one to work. Nick is also in need of serious prayers, Nick and his family are very well known in the Neuroblastoma world, I still remember way back when they first came to the Ronald House, Nick was much younger then. I am so glad that he has found love and she is right by his side, and pray they get to have more time together. I hate this horrible disease!!!
