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.

Clinic today and another blood transfusion. He's set up to have a platelet transfusion on Friday. His counts are really low. He's still just so weak and sleeping most of the day and night. He started a daily shot to try and boost up his numbers quickly for the stem cell harvest in a couple of weeks. He's currently sporting a huge black eye. He bruises so easy because of the low platelet count.

Had clinic today. Jake still has no strength and will hardly walk. This round of chemo has been the worst on him by far. He is refusing to drink so his electrolytes are low and was sent home on fluids again for the next couple of days. I'm hoping that will help perk him up.

Going to see if we can get in and see some fire trucks at one of the local engine companies. Jake keeps asking. He is very weak and asking to ride in the stroller which he has never done before, his strength is completely wiped out but hopefully we can make it for an hour or so.

Jake finished his last day of chemo this cycle. He's very weak and sleeping alot. Each night we come home with a bag of fluids to help flush the toxins out as fast as possible because it's going to damage his kidneys and hearing and the faster they can get them out of his system the less damage will be done, hopefully. Stem cell harvest and surgery before next cycle. Thanks everyone for keeping him in your prayers.

(From Mimi)

Jacob is leaving for New York tomorrow. He'll be gone for about 8 weeks. I'll be up there with him in about 4 weeks when he has surgery.. I'm going to miss him and his mama until then though.

Jacob is getting ready to go into the hospital for a few days for 2nd round of chemo.
Tomorrow is his 3rd birthday. It makes me cry to know how sick he's going to feel on his birthday.
I HATE CANCER !!

It's official - Jacob is bald! I'll post a picture later - he's still a cutie. The right side of his face is having a reaction to the chemo and is partially paralyzed. Still cute though!!

We got the treatment plan from New York today. Next chemo will be in Dallas then off to NYC on April 20th for stem cell harvest and surgery. He's bounced back from round 1. Playing like normal. He's walking around with my old stethoscope around his neck. He told me he was a doctor. Go Jacob!! His hair is really shedding today. I'm looking for cute caps!!!

Jacob got out of the hospital today. He's only lost a little hair so far. Yea! For a little longer at least. :( He seems to be feeling pretty good which makes his Mimi very happy!

Jacob is back in the hospital after getting a transfusion yesterday. He was admitted last night with a high fever. Doctors aren't sure why yet. He is very weak from the chemo and will likely need another transfusion. So hard to see him so sick.

Jacob is out of the hospital now. He's very quiet and not feeling very well. We were told to expect this, but he's always such a happy acting little guy, it's kind of hard to see him like this.

Prayers answered!! MIBG test came back. No cancer anywhere except the abdominal tumor we knew about and the new tumor by his kidneys. It's major wonderful that it isn't in his bones, bone marrow and lungs. The Power of Prayers. Thank you all! And the greatest thanks to God. The battle's not over but I am grateful for some good news. PS.. Chemo is doing a little rear kicking. He's really sick tonight.

Jacob had a long day. X-rays and a 3 hour sedated nucleur test specific for Nuuroblastoma and then chemo. Again, he handles it like a champ. Sat up and ate a cheeseburger after all that!! He has everybody he meets up there charmed by his sweet smile and pure cuteness.

Day started with bad news. Drs said it was in his spine. Tons of tears and visit to my Pastor later, I got to the hospital and all thanks to God, we got good news. Tests came back and there's no cancer in his bone marrow and the lung fluid is negative for cancer! Dr said he thinks there is no spine cancer either after re-reading scans. We'll have to wait on one more test tomorrow for that. Our God is so Awesome!

It's begun.

Jacob just got back to his room. He had a 5 hour sedation to finish up all the scans. Papers are signed and the drugs have been ordered. At 8:00am the chemo begins and his life changes.

Jacob has surgery to remove bad port and put in the new port for chemo. He's doing well. Main doctors from Childrens Dallas just came in. Said there are multiple areas of tumors in abdomen. Said it is extremely important to start chemo immediately without waiting on tests. Shannon is going to call Sloan NYC in the morning. We need their direction, but main doctor is away this week. Lots of decisions!

Jacob's pneumonia turned out to be blood from tumor cells by his lung. The one small tumor that was to have been rfemoved is now a large one, with another by his kidneys. It's now full scale WAR on the cancer. AS soon as he is stabilized, we're off to NYC to begin a 2 year treatment plan.

Jacob is in the hospital with pneumonia. He's been trying to shake RSV for six weeks so he can have surgery, but it's settled in his lung. He's doing good. Just being Jacob - cool calm and collected. He still has major surgery ahead. We're waiting on a CT scan to check our that tumor. Please keep him in your prayers.

Jacob's surgery was cancelled until Feb 25th. He has RSV and it's too risky for surgery until he is better. The surgeon told them today that even though the MIBG test didn't show it, a CT scan has picked up worrisome lymph nodes near his aorta.

It could be only inflamed lymph nodes from previous surgery, but they have to come out immediately. Very dangerous surgery again especially combining it with the positive tumor in lower abdomen. Just wanted to give everyone an update

Update on Jacob. Tests came back. Good news: no cancer detected in arms, legs, bones or abdomen - sites where it would likely appear if it was coming back.
Not as good news: the remaining tumor in very lower abdomen has increased from 1.5 cm to 2 cm. Enough of a change to remove it immediately. Surgery is set for Monday.
Please keep him in your prayers.

(From Mimi)

My little grandson Jacob is about to leave for NYC in a few minutes. He still has one tumor that we know about. Please keep him in your prayers that it has not grown and is not the aggressive type and the doctors will be able to remove it safely. Please pray for his complete recovery. We love him so much.