Jacob Hill's Journey: October 2010

Tuesday, October 26, 2010

Jacob is out of surgery and doing well in the ICU. The surgeon was able to get the tumors and even miraculously remove the tumors from both adrenals. Early pathology shows them to be favorable.
Thank you all for yor prayers and concern .
God has been so good to us.

Monday, October 25, 2010

Good news on Jacob's bone marrow biopsy. It came back clear so the surgery is a go for tomorrow. Please keep him in your prayers.

Sunday, October 24, 2010

Jacob took us to the Museum of Natural History today. That Mr T Rex is pretty scary looking!! He was ready to go to the Central Park zoo, but Mimi was worn out! Maybe tomorrow...he finished up the day making Halloween cookies at the Ronald!

Saturday, October 23, 2010

Dad (Papa) flew up today. Jacob was glad to see his Papa. We took a subway to the piers and a night cruise of the harbor. New York is beautiful at night. We caught a cab back though.
The people we have met here have all been wonderful to us. It makes it so much easier to be away from home and our family and friends.

Thursday, October 21, 2010

Finally got into the Ronald McDonald House!
This place is awesome. It really gives families security and a welcoming place to stay. Travelers Ins came, provided and served dinner. Then the New York motorcycle club came roaring up on Harleys with a truck full of pumpkins for the kids! Wonderful!

Jake said after having New Yawk pizza, he's never gonna be able to eat Pizza Hut again!
The food here is amazing.
Y'all may have to have an intervention on me, I think I'm becoming a New Yorker!!!

Wednesday, October 20, 2010

Jacob is out of the procedure and had his first dirty water dog - that's a street vendor hotdog for you non New Yorkers. Yum!!
Laura, I'm bringing you a street pretzel - you'll love it !!

Tuesday, October 19, 2010

Update on our little Jacob. We met the surgeon and doctor at Sloan Kettering today. They feel very strongly that Jacob is a rare case and can be treated with surgery alone. No guarantees were given, but they seemed very optimistic. The surgery is considered life threatning so once again I ask all of you to remember Jacob in your prayers.

Leaving for first appointment with Sloan Kettering doctors. Jake is so happy, off to see the big city. I'm so grateful that he is unaware how important today is.

Friday, October 15, 2010

Off to New York City on Monday. We're gonna kick some neuroblastoma butt!!!

Friday, October 1, 2010

Update on Jacob. Had a 4 hour meeting with Childrens Hospital doctors. Got the stage 4 high risk diagnosis confirmed. We were told that he has a very rare cancer with an even more rare tumor type. Thank you all for your kind words and prayers. We all love this little guy. He is so brave.

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.