Jake was quite likely born with retinoblastoma. His mother,
Janice, took him to several doctors because Jake’s eyes would
often cross as an infant. The pediatricians told her that without a
bridge on his nose infants often cross their eyes. When he was
still crawling, he often crashed into the furniture. At first he used
his right hand, and then suddenly he started doing everything
with his left hand. Janice went to the pediatrician again, at least
5 times in fact, because she felt that something was not right,
and she was told each time that everything was fine with the
boy, that it was postpartum depression and that she was
panicking for no reason. Janice was again told that it is normal
for small babies to look cross-eyed.
But one morning Jake was playing in his crib and the first thing
Janice noticed when she walked in the room was that his eye
was completely white and flipped up as if he had no control over
it at all.
Janice immediately called her pediatrician who finally agreed to
take a closer look at Jake. Jake’s eyes were dilated and while
they waited what seemed like forever for the pupils to dilate and
Jake was getting fidgety…they even thought about whether to
just go home, but Janice didn’t give up. They waited for the
examination and Jake’s pediatrician told the Coney’s that he
believed there was a “scratch” on Jake’s eye, and that he had to
go to the hospital the next morning to have it addressed.
The first examination at the hospital though showed that Jake
had Stage 4 Retinoblastoma. The exam also indicated that Jake
was already blind in that eye. The retinoblastoma had begun to
spread to the nerves of the eye and they had come to the
hospital just in time. Jake was two days from his first birthday.
No one in either of Jake’s parents families have had
retinoblastoma but it was confirmed that Jake is the first to
present with the RB13 gene.
Two days after diagnosis, the family flew from Malta to London
for another confirmation of the diagnosis and to start
chemotherapy. Jake went through eight grueling months of
chemotherapy, each and every week.
It became too difficult and tiring for Janice and Jake to fly to
London so often, so the family decided to move to Canada to be
treated by a team she’d heard about there. Janice was born in
Canada and news of the amazing Dr. Brenda Gallie and her
team at Sick Kids Hospital in Toronto had reached her in Malta!
Janice was surprised that Dr. Gallie’s team was so much more
informed about Jake’s illness and was relieved that at Sick Kids
Jake was not another patient…he was Jake.
The Coney’s knew they were in the right place for Jake’s
treatment. After several additional tests in Canada, the doctors
shared the news that it was possible for Jake’s type of
retinoblastoma to spread to the bones. That was really tough
news to hear but while Jake did have to undergo multiple laser
therapy treatments, we are happy to say that with his watchful
team, Jake has now been eight years in remission.
Janice tells us that she was not aware of this disease when her
son was diagnosed, but she knew in her heart that something
was not right. She is disappointed that it took so long to get
Jake’s diagnosis and that even the doctors she initially visited
did not know much about Jake’s diagnosis.
Their journey has been difficult but Jake and his family are
incredible fighters and are true heroes. Despite all the difficulty
and adversity, Janice knows it has all been so worth it. Jake’s
eye was saved even though his sight in that eye was not.
Jake is now 9 years old and with the support of his family, he is
catching up with his peers in all areas of life. He is a confident
and proud nine-year-old boy who we know will be an incredible
role model for others. We are so thankful that he has such an
extraordinary family and such incredible doctors guiding him
through and we at KTG wish Jake all the best and look forward
to watching him grow and continue to inspire others!