By Christine Foster
Once upon a time, Dylan Stephenson was a bright, playful 4-year-old. He complained of having severe headaches, but he was a happy, loving little boy. Today he is a four-year old suffering from a rare (12 in 100,000) disease of the pituitary gland of his brain. On April 22, his parents, Rodney and Sophia, took him to Scott & White where the doctors scheduled surgery for May 6.
The doctors at S&W were confident in their ability to help Dylan and felt the surgery was necessary and would be successful. And it was! It worked exceptionally well. Dylan had a rapid and positive recovery; talking, playing and, happily, not suffering from the debilitating headaches he had experienced previously.
This joyous period lasted for three weeks. Then the headaches returned. His parents rushed him back to the emergency room at S&W where a CAT scan showed no tumor. Dylan was sent home with the diagnosis of a clogged sinus, a side effect of the surgery. Dylan continued to decline, gradually becoming even sicker than he had been prior to the surgery.
In July, the Stephensons requested that another MRI be done and it was on July 23, two days later, the neurosurgeon advised them that the cyst had returned and that it was much more serious than originally diagnosed. This cystic tumor, a craniopharyngioma, was something S&W was unable to address and the Stephensons were directed to the Texas Children’s Hospital in Houston.
On Aug. 2, the Stephensons saw the neurosurgeon in Houston and received the best news they could have hoped for. This physician sees approximately two of these cases a week and believes in taking a minimally invasive first approach. The family was given three options ranging from the nasal entry procedure to a cranial surgery involving an incision the entire length of his hairline. The endoscopic endonasal operation would remove the entire pituitary gland. The doctor said that gland is no longer functioning because of the cyst. The degree of success with this procedure may depend upon the amount of scar tissue left from the S&W surgery.
There is an 80 percent success rate for this surgery over the first five years. In the meantime, however, Dylan has diabetes insipidus, which is common with this illness, plus he needs thyroid and steroid medications. In 12-24 months he may also need growth hormones.
Even with a 100 percent successful outcome to this surgery, little Dylan and his family still have an uphill financial and emotional battle. Their out-of-pocket expenses in traveling to Houston continue to mount and the original $30,000 cost estimate seems low when you consider that the S&W expenses totaled $68, 000.
The family was overwhelmingly optimistic with the diagnosis from the doctor at Children’s Hospital and were ready to face the challenge although they realize they have a long road ahead of them.
“We were so relieved with the surgeon’s news,” Sophia Stephenson said. “It was the best news we could have received! We are so confident in our doctor and know Dylan will be okay. We have to have faith and we do.”
Since Dylan has been referred to a hospital in Houston, the Stephenson’s insurance may decline part of this claim. Because of that possibility, an account has been set up at the Extraco Bank in Dylan’s mother’s name, Sophia Stephenson. They have currently raised approximately $1,000.
The Stephensons are asking for your prayers and donations to help defray the enormous cost of this little boy’s medical expenses.
“The news we received back in April was devastating and when we heard that it returned again, and larger, simply broke my heart,” said Dylan’s aunt Morgan Rivera.
As of Aug. 7, after a grueling l2-hour surgery, little Dylan Stephenson is tumor free! As the surgeon had planned, he was able to access the tumor through the nasal passage, the less invasive procedure. The entire pituitary gland and cell walls were removed and a subsequent CAT Scan and MRI showed no more tumor tissue.
The Stephensons have been warned that this condition can recur, but, for the moment, they believe all their prayers and those of so many others have been answered.
Dylan and 3,500 other children who suffer from Craniopharyngioma have been selected to be part of an oncology study. The study is to determine if chemotherapy could be a viable cure for this illness. As Sophia Stephenson pointed out, the study won’t help Dylan now, but maybe it can help other babies in the future.
Amidst all this good news, however, looms the cost of these procedures and Dylan’s future care. He will be hospitalized for another week to 10 days; fortunately it appears that Dylan will not need radiation at this time, but a definite decision on that treatment plan will not be made for three weeks. He will require MRIs at least every three months for the next two years. The oncologist told the Stephensons it is very rare for this type of cyst to reappear after five years, though not impossible.
For more information or to make a donation, please contact Morgan Rivera at Dylanscause@yahoo.com or find the Stephensons at facebook.com/DylansCause.com.