Jacob Hill's Journey: September 2012

Friday, September 21, 2012

Back to Reality

Sorry for the long gap between posts, but we've been busy enjoying life. Me and Jacob have been home for almost 3 months now. The longest amount of time, in one stretch, in over 2 years and we've enjoyed every second of it. I had almost forgotten what it's like doing the everyday little things like laundry, taking and picking up the girls from school, getting dinner ready or just catching a movie over the weekend. It was our little vacation from reality. Our reality of having a child and brother with Neuroblastoma. But our vacation is over. New York wants us back up there for scans and to see if Jacob's levels have dropped enough to start his antibody therapy back up. Jacob's been HAHA positive this whole time, which is not a good thing but has allowed us to stay home for so long. To bridge the time between treatments, here at home Jacob has been on Accutane, very nasty stuff, in the hopes of killing any neuroblastoma cells in his body. But we will have to wait until next week to find out if it's been doing it's job. I will keep everyone up on the test results when we get them back.

About Jacob

Jacob was a happy, healthy (according to his regular checkups), energetic 2 year old. Running around all day chasing after his 3 older sisters and getting into trouble like little boys should. I was a work from home mom with 4 great kids and all was right with the world. But on September 17, 2010, our nightmare began. Jacob was diagnosed with Stage IV High Risk Neuroblastoma. A rare, aggressive and deadly childhood cancer. Jake woke up that morning complaining that he hurt. I, thinking it was just pain from a little spill he had taken off his scooter the day before, redoctored a scrape on his knee and told him it would be better in a day or so. He seemed ok after that. But later that afternoon, just out of the blue, something told me to take another look at him. I laid him down on his back and starting at the top of his head began working my way down his body feeling for anything abnormal. Everything seemed to be alright until I got to his belly. I pressed down and initially didn't feel anything. But once again, something told me to press a little harder. So I did, and that's when I felt it. A hard spot deep in his abdomen towards the back of his body. Having no medical background I had no idea what it was but I did know that it should not be there. I called the doctor and insisted he be seen that day. At the office the doctor began to exam Jacob, he did not even have to say a word. I will never forget the look on his face when he said that he too thought he felt something there and that we needed to go immediately to Childrens and have some test done. 10 hours later my worst fear was confirmed. Jacob had several masses in his abdomen, on both adrenal glands, up in his chest and around his spine. Jacob had cancer known as Neuroblastoma. An 8 hour surgery was performed the next day to remove the massive tumors in his belly that were pressing on organs and causing his pain and a port was placed in his chest so his chemo could be delivered more efficiently. And although the surgeon was able to completely resect the tumors in his abdomen he had to close Jacob up with cancer still inside his little body. In a state of shock, I googled his disease looking for the place where Jacob would receive the absolute best care. The nightmare was just getting worse and worse with every word I read. Then I saw a website about a hospital in New York, Memorial Sloan Kettering, that was the world's leading Neuroblastoma hospital. There they have a world renowned Neuroblastoma surgeon, a true miracle worker, a team of world renowned Neuroblastoma doctors and treat more children with Neuroblastoma than any other hospital. I contacted Dr. Kushner at Sloan Kettering who got back with me right away. He listened as I told him about Jacob and told me that he thought he could help. I was now faced with a very difficult decision to make. There are also other amazing hospitals around the country that treat this disease but they treat it very differently than they do in New York. It was an almost impossible decision to make. There was no way of knowing which choice was the right one. I only had my instincts to go by and they kept telling me NY was the place he needed to be. So I decided to place Jacob in the hands of the doctors up there and we were on our way to NYC. Since being there Jacob has had 3 additional surgeries to remove tumors from both adrenal glands (one adrenal was removed completely the other partially) chest, pelvis, around his spine and to many lymph nodes to count. Jacob was treated with an agressive treatment plan which included 6 cycles of high dose chemotherapy, stem cell harvest and 14 doses of radiation. Sadly we received some discouraging news this past November. After his latest set of scans, Jacob's Neuroblastoma has been classified as Refractory. Meaning that it is not responding to the chemo any longer. The tumor in his spine is still there and possibly progressing. He has received 2 more cycles of chemo and hopefully at the end of February will start to receive the HU3f8 antibody. Although this is a very scary and upsetting setback, we will continue to battle on. Jacob and I will remain in New York at the Ronald McDonald House for the remainder of his treatment, leaving behind his three sisters, family and our home. Jacob's courage and sweet spirit throughout this whole ordeal has been an inspiration to all who know him.