Jacob Hill's Journey

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.

Friday, March 16, 2012

I Hate You Cancer !!

Jacob woke up yesterday morning with a few little bug bite looking spots on his leg. While we were at the hospital that afternoon for labs, I had the doctor take a look. She agreed that they did look like bites and sent us back to the Ronald with some medicine for itching. That night I gave Jacob one more once over like I do most nights and put him to bed. The bites didn't really look any worse. Maybe just a touch bigger around but nothing to freak about. Nothing to freak out about until this morning that is. Overnight, the reaction had gotten worse. By like a thousand! I grabbed him up and rushed him to the hospital. I didn't even call. I told myself I'd call on the way but I was getting him seen one way or another so there wasn't any huge urgency in getting ahold of anyone other than to give them a heads up that we were coming in.
So here we are again. Another record breaking severe reaction from
his treatment. Probably from the antibodies he's been receiving these past two weeks. They are admitting him for observation and more meds. I will keep everyone posted.

Monday, March 12, 2012

Here we go again, again!

I can't sleep. My mind is going a million miles a minute. Jacob's second antibody infusion is just a few hours away. I know the pain will be as bad as it was last Monday, that's a guarantee, but I'm worried now that it might actually even be worse this time. They said the pain sometimes increases with each dose. I hope this is not the case for him. The week was rough. Jacob had lots of pain all over his body until Wednesday. From Thursday on, he still had pain but it seemed to be just in his hands and feet. The doctor said it was most likely neuropathy, which is basically a pins and needles sensation from damaged nerves. It is a fairly common side effect and unfortunately sometimes permanent. He has also developed a nasty cough that is getting worse every day. I have read this is happening to some of the other kids that are receiving the HU3f8. I don't even want to think about what kind of damage these drugs are doing to his lungs. Just another worry to add to my ever growing list. At least we got a small break today with his one and only day off from the hospital. We just kicked back on the couch and watched movies, ate pizza and drank lots of chocolate milk. Everyone please keep
Jake in your thoughts tomorrow. It's going to be another hard day!

Sunday, March 4, 2012

Just a few hours away!

Jacob is just a few hours away now from starting the Hu3f8 antibodies and I can't sleep a wink. Feeling sick to my stomach. We have to be there at 8:00 in the morning but he has a lot of premeds first so he actually won't get started until around 10:00 or so. Everyone please keep Jacob in your thoughts and prayers that the pain medicine works and there will be little pain and that the antibodies do there job and keep this horrible disease stable.

Thursday, February 23, 2012

The Resuts Are In

I finally met with the doctors and got the word. Jacob's disease is still lingering in his spine. The last two cycles of chemo that he received after they discovered the cancer had become refractory did not work to reduce the tumor. My next meeting was with the doctor leading the Hu3F8 antibody clinical trial. She explained that because Jacob is not NED(no evidence of disease) that he did not qualify for the antibody treatment we were hoping to get him on. Instead, Jacob will be starting the Phase 1 study for another version of these antibodies. Actually he will be the first to receive the highest dose of this treatment that has yet to be administered. The good news is that he'll be getting the maximum dose that's been given the bad news is because this is a phase 1 study they aren't sure how well this works on humans, if at all. The hope is that the antibodies will keep the cancer stable. Not a lot to go on but there is at least still something to be hopeful about. Thanks for the continued thoughts and prayers.

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.

Jacob

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.