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