Jacob Hill's Journey: June 2011

Friday, June 24, 2011

Getting Ready for Chemo Cycle 5

Jake went into the hospital on Father's Day. He's been in there for almost a week. They knocked out the infections and the doctors just cleared him to go back to the Ronald on fluids. We get a break on Saturday and then it's back to the hospital on Sunday and Monday for transfusions. He is starting his 5th cycle of chemotherapy on Tuesday.

Friday, June 17, 2011

Waiting on a Fever to Spike

Jacob's ANC ,immune system, is 0.0. The doctors are expecting a fever to spike any minute now and then Jake will be readmitted to the hospital for antibiotics and nourishment. He has mucositis, mouth sores, from the chemo and still won't eat or drink. They are keeping him knocked out to keep him comfortable at this point.

Monday, June 13, 2011

Chemo Reaction

Jacob is having a serious reaction to the chemo. It looks like it is burning him up from the inside-out. It's almost indescribable. He is in so much pain. The doctor said it is rare and the drugs they've given him to help aren't working. I'm just trying to keep him coated in ointment. I'm feeling very helpless right now.

Thursday, June 9, 2011

C Diff Infection On Top Of Everything Else

Jacob's halfway done with chemo but it is really doing a number on him. He's been so sick the last couple of days with high fevers and getting sick to his stomach. He refuses to eat or drink and can't get out of bed. He just tested positive for c diff infection in his intestines, which is causing him lots of pain on top of all the other pain. He looks terrible but is hanging in there and taking everything that keeps getting thrown at him. We are still waiting on pathology to come back. Hopefully sometime later today. Pray for some good news for a change.

Monday, June 6, 2011

Chest tube out, Chemo in

Jacob just had his chest tube taken out. I hate having to help hold him down while they do it, he always screams "Please Stop" but he always feels better afterward. He will be starting his 4th cycle of high dose chemo tomorrow. It's always hard to see him get sick from the chemo but it will be especially hard to see him go through it just 4 days out of surgery with a cut that runs all the way across his belly and up under his arm. I am still waiting on pathology to come back to see how far it has spread. Please pray it hasn't gone up into his neck.

Thursday, June 2, 2011

Surgery ending with some sad news...Stage IV-N High Risk Neuroblastoma

Jacob made it through surgery. He is stable now in ICU, resting. It was a very long 6 hours. Afterward the surgeon came in to let us know how things went. He was able to remove everything that he could see on the left side but told us that there was some right side lymph node involvement that he would have to go after in another surgery. And then we received some even sadder news, Jacob is being reclassified as Stage IV-N High Risk. It has gotten into his lymph system and spread. He is now going to be receiving the most aggressive treatment they offer. Please pray for Jacob, he is in a fight for his life.

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.