tag:blogger.com,1999:blog-57888602009-03-02T04:28:11.703-08:00Updates regarding Danilo's health and progress.Mun Munhttp://www.blogger.com/profile/09604761491208138697noreply@blogger.comBlogger70125tag:blogger.com,1999:blog-5788860.post-1112478793459784652005-04-02T13:48:00.000-08:002005-04-02T13:53:13.460-08:00

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.

Mun Munhttp://www.blogger.com/profile/09604761491208138697noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1106089793786884432005-01-18T15:09:00.000-08:002005-01-18T15:09:53.786-08:00

Danilo had his final dose of ACTH the day before yesterday. Cross your fingers.

Mun Munhttp://www.blogger.com/profile/09604761491208138697noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1100329735748417362004-11-12T23:07:00.000-08:002004-11-12T23:08:55.746-08:00

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!

Mun Munhttp://www.blogger.com/profile/09604761491208138697noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1087444071486821372004-06-16T20:47:00.000-07:002004-06-16T20:47:51.486-07:00

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

Mun Munhttp://www.blogger.com/profile/09604761491208138697noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1086753725845441642004-06-08T21:02:00.000-07:002004-06-09T14:50:50.016-07:00

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

Mun Munhttp://www.blogger.com/profile/09604761491208138697noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1085685034370883052004-05-27T12:10:00.000-07:002004-05-27T12:10:34.370-07:00

Surgery will be June 16th at CHLA.

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1085515486317036602004-05-25T13:02:00.000-07:002004-05-25T13:04:46.316-07:00

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.

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1085128297752179762004-05-21T00:35:00.000-07:002004-05-24T17:12:16.183-07:00

I tagged along with Danilo and Oge to their appointment on Tuesday at Children's hospital. We were supposed to meet with the surgeon, but he had been called into emergency surgery. So, we talked to his associate, a paediatric surgeon named Kasper Wang. We thought that Danilo would get scheduled for surgery to remove the neuroblastoma. However, Dr. Wang said Danilo needs an MIBG scan first. The

Mun Munhttp://www.blogger.com/profile/09604761491208138697noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1084816355255037002004-05-17T10:42:00.000-07:002004-05-17T10:52:35.256-07:00

Here are some excerpts I stole from some online information sites. Danilo's tumor is very tiny, by the way ... : Neuroblastoma is predominantly a tumor of early childhood, with two thirds of the cases presenting in children younger than 5 years. In rare cases, neuroblastoma can be discovered prenatally by fetal ultrasonography. Neuroblastoma originates in the adrenal medulla or the paraspinal

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1084579608956319572004-05-14T17:05:00.000-07:002004-05-14T17:06:48.956-07:00

His eyes are bloody, but the strabismus appears to be gone. We saw the ophthalmologist this morning and she checked his vision and it's pretty darn good so he should heal up fine.

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1084319296672569342004-05-11T16:41:00.000-07:002004-05-11T16:48:16.673-07:00

We had an appointment with the oncologist this morning. He said that Danilo's tumor is technically a neuroblastoma, but they are not as feared these days as they used to be. He is not expecting Danilo's tumor to be very aggressive and he's not expecting to have to fight it with chemotherapy. They are excited about removing it and doing all kinds of lab experiments on it though. The surgery is not

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1083879808981965712004-05-06T14:43:00.000-07:002004-05-06T14:46:42.140-07:00

Tuesday he had his CT scans at Children's Hospital. They found a tiny peanut sized mass. I talked to Dr. Mitchell today. She says the mass is located in the T11 area on the right, above the diaphragm. They will go in with a scope to remove it. I also talked to the pediatrician today. He contacted Dr. Kimiko at Cedars who looked at his scans last year. Kimiko claims that he looked at it again and

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1083089946328209042004-04-27T11:19:00.000-07:002004-04-27T11:22:10.546-07:00

She' starting him on a blood pressure medication. Also, by the end of May, he will be taking 1/4 of the amount of ACTH that he was taking when he started. They are very impressed with his progress. Due to the anesthesia, we may have to postpone the CT scans on Thursday because he has a slight cold. We'll see how it goes.

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1082582088921617042004-04-21T14:14:00.000-07:002004-04-21T14:17:47.280-07:00

April 21, 2004 Dear Health Net Appeals Officer: I am writing to you to appeal for the payment of the attached bills. My son, Danilo, came down with a rare illness called Opsoclonus Myoclonus Syndrome (OMS) in August of 2002. He was 2 ½ when it all started. For one and a half years, he was unable to walk due to severe ataxia and due in part to the fact that he was badly misdiagnosed. When it all

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1082581959937198012004-04-21T14:12:00.000-07:002004-04-21T14:15:38.326-07:00

Checking for neuroblastoma once again.

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1081360189748584802004-04-07T10:49:00.000-07:002004-04-07T10:52:33.653-07:00

We saw the ophthalmologist yesterday. She said Danilo is a poster child for amblyopia. The vision in his lazy eye has really improved. The surgery will be cutting a muscle or two in the eye and reattaching them so that they are more taut (or something like that). Still waiting for CT scans although the authorization went through. Potty training is going quite well. He's not as ravenous as he

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1080001296120660592004-03-22T16:21:00.000-08:002004-03-22T16:24:04.450-08:00

I just have one correction - Danilo's next appointment with Dr. M. is on 4/26. His CT scans are still up in the air, although I talked to Beverly just now and it should be straightened out in a couple of days.

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1079987729391491592004-03-22T12:00:00.000-08:002004-03-22T12:41:35.466-08:00

I went along with Oge to Danilo's doctor appointment today. Danilo has gained 5 pounds only since his last visit. Weird, 'cos it looks like more. His face is a little puffy from the steroid treatment I guess. His blood pressure was slightly high (131/77), but Mitchell doesn't think he needs blood pressure medication at this point. Danilo has been getting 1 cc of ACTH daily. For the rest of March

Mun Munhttp://www.blogger.com/profile/09604761491208138697noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1079467004893507402004-03-16T11:56:00.000-08:002004-03-16T11:59:06.560-08:00

I just heard that insurance authorized the new MRI so finally we'll get the scans done again. Maybe they will find something? Hm... As a side note, I took Jon Carlo to see Linkin Park last night. Yay!

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1079157877051525322004-03-12T22:04:00.000-08:002004-03-12T22:06:55.856-08:00

Just had dinner with Oge, JC, and Danilo. Danilo's walking is better and his intention tremors have diminished. Oge says the drooling and snoring are much less. His verbalizing continues to improve and his appetite is huge. He's already put on weight and looks better. The strabismus in the left eye has switched to the right eye.(It's done this at least once before and switched back I believe)

Mun Munhttp://www.blogger.com/profile/09604761491208138697noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1077916091658862052004-02-27T13:08:00.000-08:002004-02-27T13:10:16.030-08:00

Danilo has a cough and a cold today. He is walking steadier and steadier every day now. He's got physical therapy today so I'll be interested in what his therapist says about his progess. The microscans are in limbo still. Beverly doesn't have the request so I emailed Dr. M. She actually emails me back very quickly most of the time. It's really nice. We'll probably get our own blood pressure

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1077667912986706982004-02-24T16:11:00.000-08:002004-02-24T16:13:54.450-08:00

Yeah, I would agree he is much more easy-going emotionally. I'm not sure if it is the ACTH or if he is just so happy that he can walk around. Last night I asked him to come and sit with me for a few minutes, but he said he was busy. He's got much more important things to do than sit around with me. His appetite and his sleeping are about the same as always I think.

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1077665072874660192004-02-24T15:10:00.000-08:002004-02-24T15:26:34.216-08:00

I just visited Danilo on his 4th day on ACTH. On a scale of 1 to 10, I'd say before treatment, Danilo's ataxia had been fluctuating between 8 and 10. Today I'd say it was a 5. His ability to walk and stand unassisted is markedly improved. I didn't see a huge change in the intention tremors, but Maria seemed to think he was less shaky. She indicated that he seemed more easy-going emotionally, was

Mun Munhttp://www.blogger.com/profile/09604761491208138697noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1077565789937600492004-02-23T11:49:00.000-08:002004-02-23T11:51:49.700-08:00

He screams a bit and fights, but when the needle comes out he holds the alcohol swab himself, gives me and the nurse a stern look and then walks off to play. And he is making up for a year and half of not walking without assistance. He will not sit still. He has to get up and walk around. Still wobbly, but getting better. I have noticed that he is a bit more inquisitive too and people are able to

Ogehttp://www.blogger.com/profile/06276924206384596165noreply@blogger.comtag:blogger.com,1999:blog-5788860.post-1077331277376733752004-02-20T18:39:00.000-08:002004-02-20T18:54:54.983-08:00

The ACTH and syringes arrived! (Hey, Oge: I fogot to ask you - Didn't Dr. Mitchell say she was going to do microscans to look for a neuroblastoma? Is that scheduled? Or in insurance-limbo?)

Mun Munhttp://www.blogger.com/profile/09604761491208138697noreply@blogger.com