Denika - Newfoundland

Denika is a beautiful girl we met almost 2 years ago now. Amazing to think back when first meeting and mentally review everything you have gone through together. She lives in Newfoundland and we have been friends pretty much since she was diagnosed. Her mom found me through Haven's web site. At the time she had just had the same surgery Haven did to remove her Ganglioneuroblastoma Tumor and was officially diagnosed with ROHHAD Syndrome. She then went on to Sick Kids in Toronto where I was contacted by an Endocrine doctor that wanted more information about my child. I put her in contact with our doctors immediately and asked them to help this little girl. Our doctors are so awesome they immediately took it on to work with her - they contacted me for permission to discuss Haven and off they went. Denika slowly began to follow Haven's treatments and what she had started with. Then suddenly Denika was found to have a second Ganglioneuroblastoma Tumor - this one in her chest. I couldn't believe it. Still Denika has battled on.........

A couple months ago her mom told me they were looking to go further in to the treatments and really do what Haven had done. Of course I was excited - I only want her to feel better and end this ridiculous disease. I told our doctors and randomly keep them updated on kids anyway. But in this case - they already knew.

Denika underwent her third surgery for a PICC line. Haven has a Cath-o-Port which is definitely much easier than a PICC/Hickman line. With the PICC line it is so easy to get infected or pulled out. We only had to endure the Hickman for 2 months and it was enough to make me crazy.

Denika has spent most of the last year in hospitals in preparation for these treatments. Not to mention three surgeries just for the PICC line. She was finally let home for Christmas to spend time with her family. They weren't sure she was going to be able to.

At the end of January/Early February Denika hopped on another flight to Toronto to begin her 4 day treatment of Hi CY. This is what Haven went through in 2009 - almost 2 years ago. Denika has been doing the IVIG treatments for almost 6 - 8 months now. She is just so adorable....I love her!

When she arrived in Toronto they immediately set her up with a sleep study to get her base line readings and prepare her for an extended stay.

About 2 weeks after Hi CY I received an email from her mom that Denika had lost her hair but her spirits were up. She had an infection while on antibiotics but was doing much better. She even told me that in just those couple of weeks they'd noticed a difference in Denika. I believe our first sign that something was working on Haven was the drop in blood pressure and being able to take her off the medication she'd been on for 2 years. Then it was that she was suddenly potty trained during the day.


On March 1st Denika celebrated her 6th birthday at the hospital. The pictures are amazing. I love seeing her smile. She looks like she was having a blast.

Now it's March 7th and Denika was allowed home on a day pass to visit with her family. We've been keeping up on Denika and are certainly happy she is doing well and able to come home even if for a day.

I was also contacted by a mom in CA that will begin following Haven's treatments. The doctors have been working through many of the details. Then our sweet Sophia in Massachusetts is being worked up to begin the treatments. She is currently in the beginning stages.

I am amazed daily at these children. The way they fight through treatments, medications, and being judged by their cover and not their poetic stories. I am honored to know all of these children and be part of their lives.