Jacob Hill's Journey: Catching Up

Sunday, February 19, 2012

Catching Up

Sorry I have not posted in awhile, it's been a tough few months for everyone. For those of you who don't know, Jacob's dad is no longer with us. He disappeared last May while we were up in NYC. We are not sure exactly what happened to him, but Jacob has had a really hard time with the loss on top of everything else he is having to deal with right now. While we were there, Jacob's scans showed that his disease had become refractory, not responding to the chemo. This was a huge blow. He still has disease in the bone and marrow of his spine. The doctors decided to start a new treatment protocol of additional chemo and HU3f8 antibodies. We did one cycle in New York and went home for Christmas and finished a second cycle in Dallas. We are back in New York again for scans, but it is already not sounding very good. His doctor has ordered more tests, which is exactly what happened the last time when we found out about his disease being refractory. He has an MRI set for Monday morning and we are praying hard that everything ends up being ok so he can go forward with the HU3f8 at the end of the month. I'm still waiting on the results from the CT and MIBG scans he had last week. Hopefully I will know something in a couple of days. He has been having pain in his side and chest. He cracked his ribs while we were home, all of the high dose chemo has made his bone very brittle. The pain is most likely from that, but you never know with this disease. Needless to say, we are very worried right now. Thank you for your continued thoughts and prayers for Jacob.

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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.