Meet Ian!

This months featured cancer cutie began his battle with cancer at the young age of 6 months. His sweet face stole our hearts instantly! Ian, you have given us more strength to continue fighting for a CURE. Stay strong sweet boy!

Read his story below written by his sweet Mommy.

Ian has bilateral retinoblastoma, diagnosed on May 18th 2007 at age 6 months old.  Ian is now 6 years old, in kindergarten and learning to read and write along with his class.  He plays roller hockey and is a yellow belt in Tae Kwon Do.  After a four year battle Ian's cancer has been stable for 2 years now.  This is our story.

When Ian was about five months old we began noticing a white glare in his left pupil.  This white spot was most noticeable in pictures.  I looked in my baby book and didn't find anything about it and it didn't seem to bother Ian any so I waited to discuss it with his pediatrician at his six month check up.   A month later the pediatrician was able to see the white glare and gave me the number of a specialist with instruction to call for an appointment.  She didn't seem overly concerned but did tell me to call her if we weren't able to get into the specialist within the next week or so.  

While sitting in the office of the specialist, pediatric ophthalmologist I recall looking around the room at all of the chronically ill appearing children, and being so grateful for my son's health.  I recall thinking how lucky we were that we didn't have to be here but this one time.  (Little did I know).  We had a long wait and I lots of time to think, we first were brought back and saw a nurse then waiting room again, then saw an optitician then waiting room again, then doctor in training then waiting room again.  After 4 hours and one cranky baby we finally saw the doctor.  I still remember the moment like yesterday.  "It's cancer and it's in both of his eyes."


We were admitted to the hospital directly from the eye doctors office and began the roller coaster that is cancer that very day.  CT scans, MRI's, surgery and chemotherapy soon followed.  Ian had a central line placed in his chest through which he received chemotherapy.  Ian went to the operating room for a dilated pupil eye exam and laser treatment for the tumors on his retina.  Ian's left eye was 80% tumor and the retina was fully detached, his right eye also had tumors and the retina was about 70% detached.  After three days in the hospital we were sent home with a large bag of medication a baby with a central line in his chest and a nurse to come to the house in 3 days.  

For the next six months this was our life.  Three days in the hospital for chemo and a trip to the operating room.  Followed by three weeks at home running our own hospital.  We had six different medications to give both by mouth and through the line in Ian's chest.   The nurse came to the house to draw Ian's blood twice a week.  It was just us mother, father and baby turned nurse, assistant and patient.  While Ian continued to grow and progress like other babies we did not get to enjoy those baby milestones like other families.  Instead of when did he first sit up, get his first tooth or learn to crawl.  We were focused on what time was his last dose of X medicine, what were his labs and when is his next cycle of chemo.  There were no trips to the park, or the zoo too much risk of germs there.  

After six long months Ian finally completed his planned chemotherapy.  Unfortunately it didn't end there.  Ian's cancer quickly returned and at age 15 months Ian began radiation therapy.  Even more horrendous than putting a baby through chemotherapy is putting a toddler through radiation.  One must stay completely still during radiation treatments so the beams can be pointed directly at the tumors.  In Ian's case the beams were pointed along his eyebrow and upper cheek bone.  In order to keep small children still for radiation they are put under anesthesia.  Ian had anesthesia daily Monday through Friday for 22 days.  Anyone who has ever had anesthesia knows this means nothing to eat or drink after midnight.  Daily for 22 days with a 15 month old please, it was torture for him and for us.  Not to mention the radiation burns, blistering burns to poor Ian's face.  Again our home hospital was back in business with round the clock pain medication for the burns and IV fluids. 

Unfortunately Ian's cancer again quickly returned.  Ian had a radioactive implant surgically sewn into his left eye at age 22 months.  Talk about painful, have you ever had an eyelash in your eye ouch.  Now imagine something sewn onto your retina and kept there for 4 or 5 days.  This implant was finally effective at killing the cancer in Ian's left eye.  However we learned about 2 months later that it left him completely blind in this eye.  

After about 2 years of fighting and being told Ian's vision was anywhere from normal to "legally blind" Ian now had vision in only his right eye.  Six months later his cancer came back in this right eye.  We were terrified that Ian would also lose vision in this eye.  As were his doctors.  At age 3 Ian began training to use an orientation and mobility cane (the white cane used by the blind to get around), and he was introduced to braille.  Fearing the worst we applied for and were granted a wish from Make a wish of the midsouth.  As I believe every child should SEE Mickey Mouse we took Ian to Disneyworld and he SAW Mickey, Minnie and the gang.  Despite our doctor's best efforts using laser therapy the tumor in Ian's right eye continued to grow.  Another radioactive implant had to be placed.  Just before Ian's 4th birthday this was done.  We were very concerned this implant would destroy Ian's remaining vision but it had to be done to stop this cancer.  Fortunately, this implant was successful and killing Ian's cancer and did not further harm his vision.     

The treatment for this cancer has left Ian's retina severely damaged.  We have to be continuously concerned about bleeding in the retina, as this could damage Ian's remaining vision.  On our last assessment Ian's vision was 20/80 in his right eye.  Ian has had cataracts, as a result of radiation, removed from both of his eyes.  I would like to ask everyone to go gold for childhood cancer awareness.       

 5 month glare - this picture shows the tumor's reflection from the camera flash 
 chemo - Ian in the hospital shortly after he was diagnosed during chemo treatments
Ian - this picture is of John and Jessica (parents) being caregiver, nurse, mom and dad

 radiation burns - this shows how the radiation burnt his eyes and face
 radiation implant - this picture was taken while he was in the hospital have a radiation disc implanted in his eye

 Ian playing hockey 2013


Kacie said...

Your story brought a fountain of tears as I read. Your family is such an inspiration to those battling childhood cancer.

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