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.

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.

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!

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.

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.

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

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.

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.

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.

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.

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.

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.

The harvest is over in just two days. They were able to collect more than enough stem cells. Next up...surgery. It's scheduled for June 2nd, followed by his 4th cycle of chemo right behind. It's going to be a hard next few weeks for him but he's a strong little man. Thank you everyone for your continued thoughts and prayers!

First day of harvest is over. He did mostly ok with it. Been a long day and he is worn out. Going in for round 2 tomorrow. I am somewhat concerned about his hearing. It's an almost guaranteed side effect from the type of chemo he's having now. Won't know full damage until he's completed all the cycles but he is starting to show signs of some now. It's hard to witness even knowing I didn't have a choice.

One more blood transfusion today before starting the stem cell collection tomorrow. It's going to be 4 very long 8 hour days of me and Jacob sitting in a chair while he's hooked up to a machine that's pumping blood out while at the same time pumping blood in. Praying he does ok with it and that they can collect all that they need.

Friday Jacob had yet another transfusion. The doctors are having a hard time getting his numbers up. They have pushed his stem cell harvest back until Wednesday, hoping that his numbers will recover enough by then.

More blood and platelets today and the scan went well. I'll find out the results on Friday and let everyone know. Pray for good news.

Jake rested all weekend. He had clinic again today. His platelets are still too low so he will have another transfusion on Wednesday. He's also set up for scans that day. This is a big one, it will show if the chemo is working. Everyone please keep Jake in your thoughts and prayers.

Jake needed a platelet transfusion today and had a bad reaction. He's broken out in hives all over his body but seems to be feeling better otherwise. His appetite has picked back up some and he has started drinking on his own.