Make A Child Smile

Davyn's Story
written by mom Stephanie

Davyn has been a little miracle even prior to conception. I had severe endometriosis and underwent a uterine suspension. Matt and I decided we wanted to try to have another child (a boy) and were told it was not possible, the endometriosis was coming back and I wouldn't be able to carry with a uterine suspension. One week later, we found out I was pregnant. The pregnancy was not easy though. I almost lost him in the first trimester and had to take progesterone and then got shingles. In the second trimester, I was bedridden and he was born 5 weeks premature, during an emergency c-section.

He did very well in the ICU the first few days, but then he stopped eating. They would then tube feed him and the next feeding he would try to eat, but it would regurgitate straight out his nose. He then endured massive testing and scoping to see why the formula was coming out of his nose. With no evidence of anything else, they randomly diagnosed him with GERD. Davyn was released 18 days after his birth. His 1st Christmas was spent in the hospital.

After being home, Davyn was on thickened formula and various medications for GERD, with no improvement. He appeared worse on the medicines and did not appear to have any symptoms of GERD, so we took him off the medicine and he thrived. Other than the occasional vomiting out of the nose, slight food aversions and ear infections, he was a normal happy baby/ toddler and a blessing and wonderful addition to our family. That was the beginning of his life, but our story really begins in June of 2008.

On June 22nd, 2008, Matt and I noticed Davyn's eyes seemed to be crossing. We watched this for the better part of the day, not knowing this could be a serious condition. Throughout the day, this crossing of the eyes appeared to be getting worse with the left eye floating not only inward but outward. We contacted our pediatrician who told us to go to East Tennessee Children's Hospital's ER immediately. Once in the ER, Davyn was diagnosed as having a lazy eye and we were told to follow-up with a Pediatric Ophthalmologist. Davyn has never had any vision problems before, and this did not sit well with me.

The next day, I made an appointment with out pediatrician who upon exam, did not believe Davyn was seeing out of his right eye as it did not appear to be responding to light. The doctor scheduled Davyn to see a Pediatric Ophthalmologist that day. The eye doctor diagnosed Davyn as having a sixth nerve palsy and ordered an MRI. On June 25th, Davyn had his first MRI at East Tennessee Children's Hospital which indicated the presence of 5 brain lesions with extensive swelling around the lesions.

Davyn was admitted to the hospital that same day and started on intravenous steroids, Solumedrol. The following day, Davyn had a spinal tap and blood work. The CSF fluid and blood work appeared within normal range for most things with the exception of increased protein and glucose levels. Davyn was released from the hospital after three days on steroids with a follow-up MRI. Davyn had a follow-up MRI on July 3rd that did not show any change in the swelling or the lesions following the steroids. Davyn then underwent two courses of IVG treatment on an outpatient basis with yet another follow-up MRI.

A few days later, Davyn developed Bell's Palsy (paralysis) on the right side of his face. On July 7th, we met with his Neurologist, Neurosurgeon, Infectious Disease and Pediatric Ophthalmologist, no MRI was ordered though. The Neurosurgeon did not want to do a biopsy at this time as he did not feel the benefits of that procedure outweighed the risk, as all the lesions lie in deep grey matter of his brain. The Infectious Disease doctor did not feel they could help us as Davyn did not appear to be suffering from an infectious disease. On July 15th, Davyn had another MRI which showed these lesions had tripled in size and the swelling had also tripled. At that time, Davyn was scheduled for a brain biopsy on the 17th. Davyn went through the cerebellar craniotomy (opening of the skull) very well with no new neurological deficit.

Davyn stayed in the hospital until July 21st and was treated with IV fluids, antibiotics and Dexamethasone. A repeat MRI was done which showed a very slight decrease in the swelling and the lesions. They believed this was due to the Dexamethasone, and decided to continue him on it. Davyn was continued on the Dexamethasone at home with a gradual decrease.

The pathology reports from the biopsy reflected that Davyn had Histiocytosis. Histiocytosis is a rare blood disease that is caused by an excess of white blood cells called histiocytes. The histiocytes cluster together and can attack the skin, bones, lung, liver, spleen, gums, ears, eyes, and/or the central nervous system.

We have since transferred to Vanderbilt Children's Hospital in Nashville, TN. Davyn underwent a chemo regimen of Vinblastine, Methotrexate and 6MP with alternating periods of steroids and antibiotics from August 2008 to January 2009. He began doing very well on this regimen with a slight decrease of the lesions noted. However, on January 19th, 2009, we received devastating news that the brain lesions got bigger, new 10+ lesions developed in his bones (listed in med reports as innumerable in his legs and arms) and three lesions were found in his lungs; he was no longer responding to the treatment. The same day, we began another chemo regimen known as 2CDA. He goes into the hospital five consecutive days, once every three weeks. His WBC has dropped severely low and we are praying he will receive his next round on time. Also, he appears to have a worsening of symptoms with complaints of headaches, leg pain and continual eye crossing.

The type of Histiocytosis Davyn has is very rare and usually responds to the 1st regimen we tried. It is not known what results we can expect from the 2CDA. Please join us in our journey and pray this works.

(Story and Interests were last updated February, 2009)