Anthony G.
Connecticut
Birth Date - November 12, 2008
Diagnosis - B Cell Lymphoblastic Lymphoma
Theme: Military
(No Coast Guard)
Due Date: 9/1/18
Anthony's Story
Anthony was diagnosed with B Cell Lymphoblastic Lymphoma in August of 2016. It took 6 months to diagnose because it is very rare. What started out as some small headaches (dx: Tension), led to severe headaches and vomiting (dx: Virus), to even more severe headaches (dx: Migraines), to the headaches becoming even more sever, one-sided paralysis, and at times unable to speak. He also started having trouble with his vision. We thought he was having a stroke and called 911. He was admitted to our local hospital. A neurologist diagnosed him with "hemiplegiac migraines" or migraines accompanied by one-sided paralysis. That made total sense. He was given a new medicine and the migraine subsided after 12 very long days.
As we were driving home after being discharged from the hospital, the headache returned. We treated him daily with a medicine that should only be used 3 times a month at most. A week later Anthony experienced a 3-day excruciating headache that worsened each day. I had had enough on the 3rd day and took him back to the hospital. Upon arrival he had a low grade fever. All symptoms pointed to Meningitis, so he was rushed back and a spinal tap was done. It showed elevated white blood cells and a diagnosis of Meningitis was made. We were sent 90 minutes away to the Childrens hospital for treatment. He was treated with antibiotics and the white blood cells decreased. For once he was totally headache free. We were elated and went home. Four weeks later the headaches came back. We went for another spinal tap. The white blood cells were higher than the first tap but nothing too alarming. Again his headache was alleviated. We were again sent to the Childrens hospital. He saw many different medical specialties. Not one could pinpoint the problem, and all but one had no answers. The one was a neurologist who was intrigued by Anthony's odd string of events. She researched and found a very rare disorder called HaNDL ... a syndrome of transient headaches with neurological deficits and lymphocytic pleocytosis.
The following month the same thing happened, and we went back for another tap. This time the amount of white blood cells had skyrocketed through the roof. Something was very wrong and we were rushed back to the Childrens hospital. Again with no one knowing what was wrong. One doctor, a neurologist, said he wanted to get hematology/oncology on board. We were told it was just a precaution, and it was very unlikely it could be cancer. I was relieved but also had a gut feeling that he could be wrong. Another spinal tap but cytology was done this time. The next morning, August 25, 2016, the neurologist came in and told me they found blasts in the spinal fluid and further testing was being done. The blasts were either an infection of some kind or cancer. That night we received the news and heard those 4 little words no parent ever wants or thinks they will hear "your child has cancer".
The following day a port was placed and chemotherapy started. Anthony would endure weekly spinal taps and outpatient chemotherapy treatments. Within a month all cancer cells were gone and he achieved remission. His treatment would continue for the next 2.5 to 3 years. We had no idea what was to come. Through the course of his intensive treatment Anthony went into septic shock 4 times, and suffered a grand mal seizure. Things just continued to get worse. Anthony stopped eating and became skin and bones. On January 10th, 2017, Anthony's heart rate shot up to 211 and he became unresponsive. My little boy who had beaten cancer was dying in front of me. The code blue button was pushed and 40 people came rushing into our room. His heart had stopped beating. I could hear them performing CPR and the sound of the defibrillator shocking his little body back to life. Thankfully he was revived. It was a total nightmare but so thankful he made it through!
In May of 2017, Anthony was done with the intense treatments and began his phase of long term maintenance for the next 2.5 years. This means low dose chemo given at home except for monthly spinal taps and outpatient chemotherapy infusions. He has returned to school in 3rd grade after missing all of 2nd grade. His hair has grown back and things are pretty much back to normal. As normal as they can be after a cancer diagnosis. Life will never be the same again but we live it to the fullest and keep Anthony as an inspiration when times get rough. He helps us all push through the tough times. For this we are truly grateful!!
"Anthony received his quilt. I think it's safe to say he absolutely loves it. Thank you to all who were involved in making my boy (and all of us) smile extra big."
