Wyatt was born on May 4, 2006. A year later, at the age of one, is when his symptoms really became noticeable. The symptoms included:
- Crying uncontrollably at times
- Frequent vomiting, especially upon awakening
- Choking on food or beverages
- Restricted movement in his neck
- Poor balance as he favored leaning to his left
- When his lack of balance caused him to fall, he would not put out his arms to catch himself.
From May to August of that year, we made five separate trips to the hospital emergency and they could not come up with any answers.
Finally in August, they did a 12 hour M.R.I. (Magnetic Resonance Imaging) which is a medical imaging technique used in radiology to visualize detailed internal structures. The M.R.I. revealed a solid mass inside his spinal cord starting at level C2 and going all the way down to C7. (The cervical vertebrae are numbered, with the first one (C1) located closest to the skull and higher numbered vertebrae (C2-C7) proceeding away from the skull and down the spine.)
They informed us that his brain was swollen as well as his brain stem and cord. They admitted him to the Critical Care Unit until they could get the swelling down to where it was safe to try to surgically remove the mass.
Five days later, after heavy doses of steroids were administered, a 12 hour surgery was performed and the tumor mass removed. After examining the tumor, pathologists determined it was a ganglioglioma tumor, a tumor that arises from ganglion cells in the central nervous system.
The surgery was extremely risky due to its delicate location, so close to the brain stem which controls all major body functions. And damage to the spinal cord could cause paralysis from the point of injury down, which for Wyatt would be from the neck down. That paralysis would have the effect of paralyzing his breathing capabilities.
Wyatt came out of the surgery grabbing at and trying to remove his breathing tube. He was able to move his arms and eventually regained his sense of balance. Happiness was all of ours once again.
It was decided that M.R.I.’s needed to be administered every three months to monitor the possible re-growth of the tumor.
He came to be monitored by a large team of physicians, an oncology neurologist, a neurosurgeon, a physical therapist, an occupational therapist, a physiotherapist, a urologist, a cardiologist and an ophthalmologist specialist.
In the summer of 2011, it was clear that the tumor had returned. This was confirmed by the increase in his symptoms and the latest M.R.I. showing growth. The symptoms at this point included:
- Trouble walking
- A lot of pain in his neck, back and legs
- Slowly losing control of his bladder and bowels
The tumor appeared larger on the M.R.I. spinal cord transports, causing the conclusion that another life-threatening surgery needed to be done. On September 19 of 2011, a second surgery was performed to remove the new tumor. We were told that this type of tumor is able to be fully resected (removed surgically) with a good chance of not growing back again.
We were elated at the report from the surgeon immediately following Wyatt’s surgery. It appeared the entire tumor had been removed. And Wyatt amazed all of us at how fast he began his recovery as we was sitting up the next day and was soon bright eyed and smiling to all who came to see him, to the utter amazement of all his visitors, family and friends.
He expressed daily determination to get back home to his farm and after one week in DeVos Children’s Hospital and one week at Mary Free Bed Rehabilitation Hospital, Wyatt got his wish as he returned to his beloved farm and life on the farm.
But at first he still had to go to outpatient therapy four to five times a week. But by the end of February here in 2012, he has now been decreased to two times a week and both times on the same day. The pressure type therapy they apply has been especially helpful with his headaches, which he suffers on a daily basis. He also will be having therapeutic horseback riding sessions, when the winter weather breaks. Wyatt loves horses so this will be an amazing and exciting form of therapy for him.
Wyatt has a tougher time in the mornings and is a very slow starter. He suffers the most pain in the morning after lying down and putting pressure on his spine during his sleeping hours but once he gets going, it is hard to slow him down.
He still is scheduled for M.R.I.’s every three months and his latest one in December revealed a spot that had his surgeon, Dr. Stanley Skarli, concerned. He said it could be a tumor, scar tissue, or imaging. He said only time and further M.R.I.’s will tell.
But then the oncologist caused us new consternation with her diagnosis that the tumor is located next to a large blood vessel that feeds the spinal cord. She tells us that the tumor will never be able to be completely removed. She said her prognosis is that Wyatt will be able to live into his teens with surgeries every four to five years to de-bulk the tumor and relieve his symptoms.
So here we are waiting for another M.R.I. in March and hoping and praying for the best but prepared for the worst of the above diagnoses. Many prayers are very much needed. And we are now involved in actively supporting research into these tumors in hopes a cure can be found in the not-too-distant future.
At this point in time, Wyatt drops a lot of things due to his inability to feel with his hands from the injury to the spinal cord but it is amazing to see how he compensates. Sometimes he has a lot of painful tingling that he likes to call “bee stings.” This sensation is most likely due to the nerves being restored after surgery but we are still not sure if he will get the feeling back over time. They say it can take up to eighteen months to know.
Currently, Wyatt is homebound schooling due to his pain levels but hopes to go back to half days at school very soon. He is registered as a kindergartner at Alto Elementary School.
