Saturday, April 02, 2005
Oge noticed a tremor in Danilo's hand on March 26th that has not recurred. Danilo has a rash on his shoulder. I believe Oge is meeting w/neurologist and neuropsychologist on April 20th about speech delays, etc.
Tuesday, January 18, 2005
Danilo had his final dose of ACTH the day before yesterday. Cross your fingers.
Friday, November 12, 2004
Danilo has been going to preschool for two weeks. Oge thinks he might go off ACTH by the end of the year. He turns five on November 22nd. Hurray for Danilo!
Wednesday, June 16, 2004
Surgery Went Well
Oge says they were able to remove the tumor with the thoracoscope, so they didn't have to open up Danilo's chest. Whew! Danilo doesn't even have to stay overnight at the hospital. Oge took him home about 8:30 pm.
The pathologist looked at the mass already and determined it was a benign neuroblastoma. Danilo slept a long time after the surgery, but Oge says he is in good spirits and hungry.Maybe Oge will post more later.
The pathologist looked at the mass already and determined it was a benign neuroblastoma. Danilo slept a long time after the surgery, but Oge says he is in good spirits and hungry.Maybe Oge will post more later.
Tuesday, June 08, 2004
Appointments with Dr. Mitchell and Dr. Shaul
Blood Pressure
Oge took Danilo to Dr. Mitchell Monday. Danilo's blood pressure medicine patch has been giving him rashes. So, Mitchell prescribed something different.
ACTH
In July Danilo's ACTH dose will decrease again. Mitchell and the oncologist, Dr. Anderson, will be at a neuroblastoma conference in Italy next week when Danilo has his surgery.
Surgeon
Went with Danilo and Oge to meet the surgeon, Dr. Donald Shaul. He said he's done about 50 neuroblastoma removals. His hands didn't look shaky. So far so good.
MIBG as detector of neural tissue
The result of the MIBG scan was inconclusive as to whether the mass in Danilo's chest is in fact a neuroblastoma. There's a chance it could be a lymph node, but it's the only mass they detected in the scans.So, they're going to remove it and test it.
MIBG detail
The scan showed them more detail about the location of the mass. It is in the fold of the diaphragm. It is oddly placed between bone and diaphragm muscle. He is not sure if he will be able to get it with the thoracoscopy. He'll have to make an incision to open the diaphragm muscle and it may be hard to see.
Surgery
Shaul plans to make an incision on the right side of Danilo's chest. If getting it with the scope doesn't work, he'll make a bigger incision on the right side of the chest. Inserting a chest tube will be necessary with the more invasive surgery and Danilo may be in the hospital for 5 days instead of 2 if they go this route. Shaul said he consulted with some national expert in Pittsburgh about Danilo's case because of the weird position of the mass. I guess his strategy is partially informed by his exchange with this dude. I didn't catch the name.
Diaphragm
He says the diaphragm is the muscle that helps you breathe, but cutting the muscle it is not a concern. (Cutting the nerve to the diaphragm would be bad though)
Sympathetic Nervous System stuff
If the mass is a neuroblastoma, it is part of (has sprung out of?) the sympathetic nervous system. Cutting these nerves could have a side effect for Danilo Shaul called "Warm foot." It would be a temporary phenomenon where the blood vessels on his right side would dilate. I guess there would be increased circulation on his right side. He said surgeons sometimes do a "sympathectomy" on purpose with old people who need more circulation going to their extremities.
Anesthesiologist
The anesthesiologist will give Danilo "stress steroids" before surgery. I didn't the significance of this.
Pre-op stuffOge has to go through Danilo's pediatrician to get his blood typed. If any of us donate blood for him, we have to do it by Friday and we need to have his medical id# at Children's Hospital. Danilo is getting a pre-op exam probably on Monday between 8 and 4.
After the surgery he has an appointment with Anderson on June 30th.
Oge took Danilo to Dr. Mitchell Monday. Danilo's blood pressure medicine patch has been giving him rashes. So, Mitchell prescribed something different.
ACTH
In July Danilo's ACTH dose will decrease again. Mitchell and the oncologist, Dr. Anderson, will be at a neuroblastoma conference in Italy next week when Danilo has his surgery.
Surgeon
Went with Danilo and Oge to meet the surgeon, Dr. Donald Shaul. He said he's done about 50 neuroblastoma removals. His hands didn't look shaky. So far so good.
MIBG as detector of neural tissue
The result of the MIBG scan was inconclusive as to whether the mass in Danilo's chest is in fact a neuroblastoma. There's a chance it could be a lymph node, but it's the only mass they detected in the scans.So, they're going to remove it and test it.
MIBG detail
The scan showed them more detail about the location of the mass. It is in the fold of the diaphragm. It is oddly placed between bone and diaphragm muscle. He is not sure if he will be able to get it with the thoracoscopy. He'll have to make an incision to open the diaphragm muscle and it may be hard to see.
Surgery
Shaul plans to make an incision on the right side of Danilo's chest. If getting it with the scope doesn't work, he'll make a bigger incision on the right side of the chest. Inserting a chest tube will be necessary with the more invasive surgery and Danilo may be in the hospital for 5 days instead of 2 if they go this route. Shaul said he consulted with some national expert in Pittsburgh about Danilo's case because of the weird position of the mass. I guess his strategy is partially informed by his exchange with this dude. I didn't catch the name.
Diaphragm
He says the diaphragm is the muscle that helps you breathe, but cutting the muscle it is not a concern. (Cutting the nerve to the diaphragm would be bad though)
Sympathetic Nervous System stuff
If the mass is a neuroblastoma, it is part of (has sprung out of?) the sympathetic nervous system. Cutting these nerves could have a side effect for Danilo Shaul called "Warm foot." It would be a temporary phenomenon where the blood vessels on his right side would dilate. I guess there would be increased circulation on his right side. He said surgeons sometimes do a "sympathectomy" on purpose with old people who need more circulation going to their extremities.
Anesthesiologist
The anesthesiologist will give Danilo "stress steroids" before surgery. I didn't the significance of this.
Pre-op stuffOge has to go through Danilo's pediatrician to get his blood typed. If any of us donate blood for him, we have to do it by Friday and we need to have his medical id# at Children's Hospital. Danilo is getting a pre-op exam probably on Monday between 8 and 4.
After the surgery he has an appointment with Anderson on June 30th.
Thursday, May 27, 2004
Surgery will be June 16th at CHLA.
Tuesday, May 25, 2004
Here are some upcoming appointments:
5/26 - bone scan, meeting with oncology Dr. Anderson
6/2 - MIBG injection
6/3 - MIBG
6/7 - appointment with Dr. Mitchell, neurology
6/8 - appointment with Dr. Shaul, surgeon
The tumor surgery (tumorectomy??) will be on either 6/11 or 6/16.
5/26 - bone scan, meeting with oncology Dr. Anderson
6/2 - MIBG injection
6/3 - MIBG
6/7 - appointment with Dr. Mitchell, neurology
6/8 - appointment with Dr. Shaul, surgeon
The tumor surgery (tumorectomy??) will be on either 6/11 or 6/16.
