Saturday, July 29, 2006

The Amazing Daniel is still NED! [Post #12 2:30 PM] [making popcorn; watching dogma]

On July 23, 2004, when Daniel was 5 months old, we noticed something wrong with his right eye. After several visits to the pediatrician and a pediatric ophthalmologist, we were sent to a neuro-ophthalmologist down at The Children's Hospital of Philadelphia (CHOP). On August 16, 2004 he tested positive for Horner's Syndrome. [Horner's syndrome is a relatively rare disorder characterized by a constricted pupil (miosis), drooping of the upper eyelid (ptosis), and absence of sweating of the face (anhidrosis). The underlying causes can vary enormously, from a snake to cancer.

Because we did not know the cause of his Horner's, we scheduled an MRI of his head, neck and chest on August 30, 2004 to rule out any tumors. We also had blood and urine tests done to rule out certain cancers. The blood and urine tests came out negative and the MRI did not show any tumors, however we were told it did show a swollen lymph node on the right side, the same side as his Horner's. We were told to wait 6 months, and when he was 1 year old, to repeat the MRI and check on the node. He had no other symptoms.

We did not think anything else about his situation for the next 6 months. On March 15th, 2005, (Daniel was now 1 year old) we had another MRI done to follow up on that swollen lymph node. Three days later we got a call from the neuro-ophthalmologist and we were shocked to find out that the lymph node had gotten significantly bigger. A biopsy surgery was scheduled for April 4, 2005. That is when everything changed.

Daniel was diagnosed with Stage 3, non N-Myc amplified, neuroblastoma with favorable histology. His bone marrow scan and bone marrow biopsy came back negative. The MIBG scan did show a little something in the left side of his neck, which bumped his prognosis up from low risk to intermediate risk. Daniel had a central line port surgically placed in his chest through which he received 4 rounds of chemotherapy and as of July 28, 2005 he is NED – No Evidence of Disease! He is currently on the follow up program of having CT Scans and MIBG Scans every 3 months to make sure the cancer has not come back.

On April 5, 2006, almost a year to the day of his initial diagnosis, we learned that there were suspicious looking lymph nodes in the same location of the original cancer site. We are currently undergoing more tests and then we will decide on a treatment plan if necessary. Update: July 25, 2006 HOORAY! Daniel is still NED! And he has reached the 1 year off treatment milestone!

Nikki’s Notes: Yea for the great news on Daniel! He’s still NED!
From his picture, I think he is just the biggest doll baby ever! You’ll have to visit his website to see for yourself! Please visit Daniel at


Blogger Shelly said...

Those cheeks are made for pinching,
yeah, that's just what I'd do,
One of these days,
I'll tickle all over them too!

7/29/2006 02:49:00 PM  
Anonymous Barbara Cooper said...

Hi Nikki - Great job on the blogathon today! I have been following all day! Since you were kind enough to feature Daniel, I felt I needed to comment. Hooray! for exeeding your goal! The blessing in all of this is that I am truly getting to see and even meet some of the unbelievably caring, considerate, compassionate, and giving people in this world. Looks like I have found another one! Thank you!

7/29/2006 02:56:00 PM  
Blogger nikki the red said...

you're welcome!

7/29/2006 03:10:00 PM  

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