|
 |
|
Brady Lawrence Simmer was born on May 30, 2005. He was a full term 7 lb./
3oz. healthy baby – or so we thought. The first couple of months of his life
appeared to be “normal” but there was one thing that was troubling us –
Brady wasn’t focusing on us. At Brady’s 2 month well-baby exam on August 1,
2005 I expressed to the Pediatrician that I had a few concerns. I told him
that Brady wasn’t focusing, he was looking up all the time and that his left
eye was lazy. I was told that infants don’t typically focus until four
months old and that I shouldn’t worry. If he wasn’t focusing by 4 months we
could see a Pediatric Ophthalmologist. Approximately 2 weeks later, Jeff & I
walked into Brady’s nursery and it must have been the way the light was
shining through the window; but at that moment, both of Brady’s pupils were
white. We immediately knew that this couldn’t be normal. On August 27th I
called the Pediatrician and demanded to be seen immediately. After looking
at Brady’s eyes, we were sent directly over to a Pediatric Ophthalmologist.
As I hurried to get Brady back in the car (in the pouring rain) I remember
being completely terrified of what we were about to learn. |
 |
Brady was seen immediately by the doctor and his eyes were dilated. The
doctor re-entered the room and said, “Mrs. Simmer, you’d better call your
husband. Jeff rushed over to meet with us and it was then that we learned
that Brady had a rare childhood cancer called Retinoblastoma – but even
worse, he had it in both eyes (Bilateral Retinoblastoma). That is where our
journey began. Three days later Brady had an MRI and CAT scan to confirm the
diagnosis and an appointment was made with Dr. Timothy Murray at Bascom
Palmer Eye Institute for the following morning. At that time learned from
Dr. Murray that Brady had the “worst case of Retinoblastoma in the United
States in a decade.” Following that appointment, Brady was scheduled for a
Bone Marrow Test, Lumbar Puncture and surgical procedure to insert his
Port-o-cath that would be necessary for drawing blood and chemotherapy.
Brady had his first EUA (Examination Under Anesthesia) on September 7th and
began his first (of 9) chemotherapy. Brady received the “triple combo” chemo
plus Cyclosporine. The triple combo consisted of Vincristine, Carboplatin
and Etoposide (VP-16). He responded well to the chemo while having all of
the side effects that went along with it. Brady completed his 9th round of
chemo in April, 2006. We had a few bumps along the way and several
hospitalizations for infections and some that included some necessary blood
transfusions – but we got through it.
|
 |
Beyond that point, there were a few months where Brady was stable and a
few where he was treated more aggressively with the laser treatments.
But on September 15, 2006, Dr. Murray reported that Brady had taken a
turn for the worse and that the retinoblastoma had come back with a
vengeance. Our only option at this point was aggressive radiation. We
met with the radiation department on the following Wednesday. Dr. Wen &
his team informed us of the risks/benefits and Brady was taken for a
simulation. He was fitted with a tailor-made mesh mask to protect his
face. They gave us the option of beginning treatment the following day –
so that is when we started, Thursday, September 21st. We were originally
told he’d need radiation every day for a month. However, they cut the
treatments in half and doubled the dose; so he would receive 14 total
treatments. Each day involved waking up early, driving down to Jackson
Memorial and typical pre-op procedures. They gave him quite the sedation
cocktail each day consisting of ketamine and versed and the total
procedure took about 5-7 minutes. Then off to the recovery room for
about 30 minutes and we were sent home until the next day. Other than a
few computer break-downs and an unforeseen Staph infection that month,
Brady recovered well and we continued to move forward. Brady completed
radiation on October 13, 2006. He was seen by Dr. Murray the following
Tuesday, October 17th and at that time he reported “no cancer activity.”
We had another two solid months of good reports from Dr. Murray. When we
returned to Bascom Palmer on December 8th, Dr. Murray continued to
express that “Brady’s eyes have never looked better” but that he wanted
to leave no stone unturned. He informed us that he was having great
success with a new treatment involving the local application of
Carboplatin (one of the chemotherapy drugs) injected directly into the
tissue in the eye. This treatment causes swelling and inflammation of
the eye but does not have the same violently unpleasant side effects of
systemic chemotherapy. Dr. Murray wanted to do this treatment on Brady’s
left eye on January 5, 2007 “just as a preventative measure.” Dr. Murray
felt that he couldn’t treat what he couldn’t see and this treatment
should help with any microscopic activity.
On January 5th we took Brady in for his 19th EUA. We were not prepared
for the news that was delivered to us. For the first time in over a
year, Dr. Murray came out of the Operating Room and looked worried. He
said Brady had yet another relapse. Both of his eyes were again engulfed
with tumors. He said that instead of just injecting the left eye, he had
injected the right eye too. He said that we’re about out of options. The
only way to go from here is this intraocular chemo together with
additional systemic chemotherapy. Jeff & I felt like our hearts got
ripped out of our bodies. From there we went over to the clinic to meet
again with Dr. Toledano whom told us that IF this treatment worked, it
would be a miracle. He went ahead and scheduled Brady to be admitted for
chemo on Monday.
Distraught & devastated we returned home and Brady began the recovery
process from the dual eye injections. Both of his eyes were swollen shut
and he appeared to be emotionally unstable as the little bit of vision
that he has was temporarily taken from him. Jeff & I had to give him 2
different types of eye drops 4 times a day to help with the inflammation
and to prevent infection. Brady slept all day and night and most of the
next day. That was when I took action.
I put out an emergency email to my friend Abby White, a bilateral
retinoblastoma survivor. I found Abby’s website (www.orphancancer.org)
by accident one day. I reached out to her and she and I became friends.
She received my email and called me from London on Sunday. She advised
me that we shouldn’t do anything until we speak to Dr. Brenda Gallie
(from Sick Kids Hospital in Toronto, Canada). Jeff & I had always
thought about seeking HER second opinion. When Abby and I hung up the
phone she said that she would ask Brenda to call us. About 30 minutes
later, we received a call from Brenda.
Brenda advised that we should not admit Brady into the hospital for
chemotherapy on Monday until she had reviewed his medical records and
given us a comparison to the Toronto Protocol. She also advised that the
first chemo was the most important. I had done some reading prior to our
conversation and learned that Brenda & Toronto specialize in recurrent
retinoblastoma. For this reason we were more inclined to heed her
advice. I spent all day Monday faxing and signing medical release forms
to & from Toronto and to and from Bascom Palmer & Jackson Memorial. By
Monday evening Brenda phoned again and told us that the Toronto Protocol
was significantly different. They use the same drugs (Carboplatin,
Vincristine, VP-16 & Cyclosporin) but they use higher doses over a
shorter period of time. Brenda was ready & willing to treat Brady in
Toronto. Now we had some critical decisions to make.
On Tuesday evening Dr. Murray called. He was very sympathetic to our
feelings and our situation and we know that he truly has Brady’s best
interest at heart. To this day I don’t think Jeff & I could have asked
for a better doctor much less a better man to be caring for our son. Dr.
Murray expressed his concern for us leaving the country with Brady to
have chemotherapy. I explained to him that Jeff & I were prepared to be
on a plane on Friday. I further explained to Dr. Murray that Jeff & I
have to live with this decision for the rest of our lives – and we also
be able to explain to Brady what he went through in his infancy. We
realize that this treatment is our last chance of saving Brady’s eyes.
So I told Dr. Murray that if we stay here and do it “their way” and it
fails, we’ll always wonder what would have happened had we gone to
Toronto. The only way to minimize this would be to ask Dr. Toledano to
give Brady the Toronto Protocol here. Dr. Murray said that what we were
asking was not unreasonable. Brenda also mentioned that with this
Protocol Brady would have a 60% chance of keeping each eye. So now we’ve
gone from “a miracle” to 60%. The Toronto Protocol was the only way to
go – here or there – but the only way to give Brady the BEST LAST
CHANCE.
Dr. Murray phoned on Wednesday morning to inform us that Dr. Toledano
agreed to give Brady the Toronto Protocol. What a relief. I know that
all of these doctors do have Brady’s best interest at heart – and ours –
and now we don’t have to leave our home or our country for treatment. We
were scheduled to be admitted on Friday and Brady would have the chemo
on Saturday and Sunday. We’re not sure how many cycles he will need and
we’re not sure what the outcome will be but with or without eyes or with
or without vision – Brady is a FIGHTER and already a champion!!! He is
happy & confident and very well adjusted and will have a wonderful life
full of love, laughter & support!!
To read a more detailed journal of Brady’s life & treatment since his
diagnosis and current updates on his progress please visit
Brady’s Medical History. |
|
 |
|
