Thursday, February 17, 2005
4/24/04
4/24/04
Jacob has a brain tumor. A one centimeter mixed type pineal germ cell tumor. We found out a little over a week ago after he'd had a week of horrendous, debilitating headaches. They started on Easter Sunday while we are Susan's for a Passover dinner. He started throwing up Monday and his eyes were so sensitive to light we closed the blinds, and layered first one then two sheets over the window.
I took him to the doctor Wednesday (Dr. Greene wasn't available) and she diagnosed it as a migraine and prescribed Imitrex, but it didn't help. I took him back the next evening and saw Dr. Lloyd who gave him a shot of Demerol "to break the pain cycle," still thinking it was a migraine. By midnight the Demerol wore off and Jacob was in pain again.
Friday morning I called the clinic before they opened, asked for the advice nurse and told her that they had to do some imaging. I must have sounded serious because she went and found the doctor, Dr. Strain, who'd seen him Wednesday, and she wrote the order for a CT. We went directly to the CT lab, then back to see Dr. Strain.
Dr. Strain started by saying she was sorry, but the radiologist had seen a mass on the CT. We had to go immediately to the ER at Stanford, and see a doctor named Cheshier. A weird cold sensation ran down my nerves, terror, I guess, but I asked for directions to the hospital and we got up and walked to the car.
We waiting for a while, but eventually Jacob got a bed and Dr. Cheshier came and saw him. We had lugged the CT scans with us, and he put them on up the light box. I could see the mass, a big white spot right in the middle before he even told me what to look for. Then he said the real problem was that the ventricles, fluid filled cavities in the brain, were far too big. The tumor was plugging up the flow of cerebral spinal fluid. That is what was causing Jacob's pain.
He needed to go to the PICU at Packard Children's hospital, but there weren't any beds so we stayed in the ER the rest of the day. The ER nurses put in an IV and started monitoring him. They were great. One had had a child with cancer and gave me a lot of encouragement.
Jacob's hair was blue. Ellie had taken him to a salon in the city to have it dyed as a Christmas present, and I'd taken him back once since. Everyone in the ER noticed and remembered him.
When Ellie arrived, the front desk started to give her the run around, but when she said she was looking for the kid with the blue hair they brought her right back. It was so good to have her there.
Young was in Seattle, teaching a class on technology in the fine metals department. I called him and he got the next plane out and was with us amazingly quickly.
Ellie had gone and gotten our puppy Sparky into a kennel, a complicated undertaking which required her to take him first to the vet for a kennel cough shot. He puked in her new car too.
Once we were in the PICU, things started to feel more under control. The first night they were able to give Jacob painkillers. Tylenol with codeine and, I think it was Fentynal, but maybe that was for something else. Later they needed to watch his pain response so all he could have was plain Tylenol.
That was on Friday. He was so sensitive to light that the nurses turned off the overhead lamps and draped a baby blanket over the lamp they wrote charts by. Even so he kept a blanket over his head until Letty got him a sleep mask.
They were waking him up every hour for neurological checks. One of questions was, "Do you know where you are?" A couple of times he answered, "in the Belly." When we asked, "what?" He tried to explain, "In the belly of, in the belly of the, in the belly of the…stomach." After a while he got so used to the exams that he would go through the grimaces they usually asked for as soon as he woke up.
By Saturday night his pain was getting unbearable, and he seemed only partly conscious ( it was hard to tell with the mask over his eyes) and his pulse and respirations began to drop. Alarms were going off more and more often. We would talk to him and rub his chest the numbers would come up for a while. After a while, it was getting harder to rouse him, and the Neuro-surgery resident came in and said they were taking him to surgery. It was just before midnight.
They had wanted to hold off on surgery until Monday when the head neurosurgeon was there and they could do a more permanent shunt, but the intracranial pressure was too high to wait, so they put in an extra ventricular shunt - a narrow plastic drain tube coming out of the top of his head. It snaked to a pouch on an IV pole with an oddly graduated device for sighting along, to keep the pouch at a certain elevation relative to his head.
When he came out of the anesthesia, he was Jacob. The pressure was relieved and he had no more pain. He didn't need a mask over his eyes. He was hungry! though he was still on liquids only, since they knew he had to go back to surgery. He started making up songs about steroids.
On Monday they did the 3rd ventricular shunt - basically tunneled from the third ventricle to the surface of the brain.
The thing he complained the most about was being hungry (he's on steroids.)
Knock on wood; the internal shunt is working, which wasn't such a slam dunk, so we feel pretty damn lucky. They took out the external one yesterday and we got to come home from the hospital today. His balance and eye-tracking are a bit off, but he is the same loveable, maddening, funny Jacob as ever.
When they put the second shunt in, they also gifted him with a medi-port in his chest, so he's all set for chemo, which probably will start a week from Monday.
In the meantime we are sleeping in our own house for the first time in nine days.
We had such a flood of love and support, its unbelievable. It really changed Jacob's experience, maybe his life, to find out how many people loved him, and it carried us through, too. Ellie and Alex and their partners, Jacob and Letty, have been with us, along with my sister and Young's brother and his family and many friends. One of Jacob's very best friend's mom threw him and his sister in the car and drove down here all the way from Eugene, Oregon to see Jacob, and us.
Jacob has a brain tumor. A one centimeter mixed type pineal germ cell tumor. We found out a little over a week ago after he'd had a week of horrendous, debilitating headaches. They started on Easter Sunday while we are Susan's for a Passover dinner. He started throwing up Monday and his eyes were so sensitive to light we closed the blinds, and layered first one then two sheets over the window.
I took him to the doctor Wednesday (Dr. Greene wasn't available) and she diagnosed it as a migraine and prescribed Imitrex, but it didn't help. I took him back the next evening and saw Dr. Lloyd who gave him a shot of Demerol "to break the pain cycle," still thinking it was a migraine. By midnight the Demerol wore off and Jacob was in pain again.
Friday morning I called the clinic before they opened, asked for the advice nurse and told her that they had to do some imaging. I must have sounded serious because she went and found the doctor, Dr. Strain, who'd seen him Wednesday, and she wrote the order for a CT. We went directly to the CT lab, then back to see Dr. Strain.
Dr. Strain started by saying she was sorry, but the radiologist had seen a mass on the CT. We had to go immediately to the ER at Stanford, and see a doctor named Cheshier. A weird cold sensation ran down my nerves, terror, I guess, but I asked for directions to the hospital and we got up and walked to the car.
We waiting for a while, but eventually Jacob got a bed and Dr. Cheshier came and saw him. We had lugged the CT scans with us, and he put them on up the light box. I could see the mass, a big white spot right in the middle before he even told me what to look for. Then he said the real problem was that the ventricles, fluid filled cavities in the brain, were far too big. The tumor was plugging up the flow of cerebral spinal fluid. That is what was causing Jacob's pain.
He needed to go to the PICU at Packard Children's hospital, but there weren't any beds so we stayed in the ER the rest of the day. The ER nurses put in an IV and started monitoring him. They were great. One had had a child with cancer and gave me a lot of encouragement.
Jacob's hair was blue. Ellie had taken him to a salon in the city to have it dyed as a Christmas present, and I'd taken him back once since. Everyone in the ER noticed and remembered him.
When Ellie arrived, the front desk started to give her the run around, but when she said she was looking for the kid with the blue hair they brought her right back. It was so good to have her there.
Young was in Seattle, teaching a class on technology in the fine metals department. I called him and he got the next plane out and was with us amazingly quickly.
Ellie had gone and gotten our puppy Sparky into a kennel, a complicated undertaking which required her to take him first to the vet for a kennel cough shot. He puked in her new car too.
Once we were in the PICU, things started to feel more under control. The first night they were able to give Jacob painkillers. Tylenol with codeine and, I think it was Fentynal, but maybe that was for something else. Later they needed to watch his pain response so all he could have was plain Tylenol.
That was on Friday. He was so sensitive to light that the nurses turned off the overhead lamps and draped a baby blanket over the lamp they wrote charts by. Even so he kept a blanket over his head until Letty got him a sleep mask.
They were waking him up every hour for neurological checks. One of questions was, "Do you know where you are?" A couple of times he answered, "in the Belly." When we asked, "what?" He tried to explain, "In the belly of, in the belly of the, in the belly of the…stomach." After a while he got so used to the exams that he would go through the grimaces they usually asked for as soon as he woke up.
By Saturday night his pain was getting unbearable, and he seemed only partly conscious ( it was hard to tell with the mask over his eyes) and his pulse and respirations began to drop. Alarms were going off more and more often. We would talk to him and rub his chest the numbers would come up for a while. After a while, it was getting harder to rouse him, and the Neuro-surgery resident came in and said they were taking him to surgery. It was just before midnight.
They had wanted to hold off on surgery until Monday when the head neurosurgeon was there and they could do a more permanent shunt, but the intracranial pressure was too high to wait, so they put in an extra ventricular shunt - a narrow plastic drain tube coming out of the top of his head. It snaked to a pouch on an IV pole with an oddly graduated device for sighting along, to keep the pouch at a certain elevation relative to his head.
When he came out of the anesthesia, he was Jacob. The pressure was relieved and he had no more pain. He didn't need a mask over his eyes. He was hungry! though he was still on liquids only, since they knew he had to go back to surgery. He started making up songs about steroids.
On Monday they did the 3rd ventricular shunt - basically tunneled from the third ventricle to the surface of the brain.
The thing he complained the most about was being hungry (he's on steroids.)
Knock on wood; the internal shunt is working, which wasn't such a slam dunk, so we feel pretty damn lucky. They took out the external one yesterday and we got to come home from the hospital today. His balance and eye-tracking are a bit off, but he is the same loveable, maddening, funny Jacob as ever.
When they put the second shunt in, they also gifted him with a medi-port in his chest, so he's all set for chemo, which probably will start a week from Monday.
In the meantime we are sleeping in our own house for the first time in nine days.
We had such a flood of love and support, its unbelievable. It really changed Jacob's experience, maybe his life, to find out how many people loved him, and it carried us through, too. Ellie and Alex and their partners, Jacob and Letty, have been with us, along with my sister and Young's brother and his family and many friends. One of Jacob's very best friend's mom threw him and his sister in the car and drove down here all the way from Eugene, Oregon to see Jacob, and us.
# posted by Jacob's Dad @ 12:21 PM 
