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

Meet Cami

This month's cancer cutie is very dear to our hearts. Our dear friend (and business partner), Chelsea, is watching her daughter battle for her life with her 2nd round of cancer. Cami is something special. If you have ever been around this girl you know exactly what we are talking about...she is inspiring and wiser beyond her 8 year old self! Chelsea, we love you so much and are here fighting this battle with you every step of the way! 

Here is Cami's story written by her amazing mom:

Our oldest child, Camryn (Cami) was born on August 30th, 2005.  Sweet Cami has always been a very vivacious, spunky girl.  She has a great sense of humor and an optimistic zest for life that is contagious.  Cami is extremly outgoing and easily makes friends where ever she goes.  She is funny and has a great sense of humor, even during difficult times.  She is beautiful and bright, wise beyond her years and we just adore her!

On July 9th, 2010, an otherwise normal Friday morning our 4 year old Cami woke with leg & hip pains.  She had been complaining about this for a few weeks but we figured it was just growing pains.  As the day progressed, she was limping a little, lethargic and running a low grade fever.  I called and made a last minute appointment with her pediatrician.   Our Dr. called late that night and said Cami’s blood work came back with some abnormalities and told us to take her directly to Primary Childrens Hospital  After a long agonizing night, Cami was diagnosed with acute lymphoblastic leukemia (or B-cell ALL) Our Cami had cancer!  There are no words to describe the pain and agony we felt  They immediately admitted us to the oncology floor.  Before we even had time to process what was happening she was scheduled for surgery for a portacath placement, a spinal tap, bone marrow aspiration and her first chemotherapy all within 8 hours of her diagnosis.   (Read more about Cami's diagnosis here.)  

4 year old Cami in the hospital after her diagnosis

After our week long hospital stay we were sent home with dozens of prescriptions, schedules and chemo dates.  Over time, we had to learn to clean differently, prepare food a certain way and isolate Cami from the outside world.  Cami was also very sad to know that she would not be able to attend Kindergarten that she was so looking forward to, she lost her precious princess hair, got poked by thousands of needles, learned the art of swallowing handfuls of pills each day and learned to live with the  many side effects associated with her treatments.  Our courageous little girl was forced to grow up way too fast but handled her disease with strength and her normal positive attitude.   Cami's went through 2 1/2 years of chemotherapy and then went off therapy September 9th, 2012.  

Watch her end of treatment video here:

Once Cami went off treatment, we had a HUGE goodbye to cancer party and our life pretty much went back to normal!  Cami made it through her entire year of 1st grade, loved not having to take her daily pills and the nasty chemo effects even started to wear off!  Then one perfectly normal summer day, Cami started having intense hip pain which eventually led to her oncologist giving us the news that every cancer family fears...  Cami has relapsed.  It is a feeling of panic and utter shock all at the same time.  Cami's cancer is back and we have to once again fight for her life, but this time her fight is a much harder one.

She will have to endure many months of extremely intense chemotherapy and radiation, followed by a bone marrow transplant from an unknown donor.  She has a long road ahead of her.  We know it wont be easy, we are all terrified and still in shock that our life once again, revolves around medication, hospital stays, Dr. visits, IV poles, and a sick daughter.  Cami has captured the hearts of all her caregivers at Primary Children's Hospital along with countless others.  She touches hearts daily as she fights her battle with a smile.  Despite our fears, we know that we can do this!  We know that our Cami is strong, she is a true fighter!  We will never give up fighting for her, laughing with her and loving her along this journey.  We will stay Cami Strong!!!

We love you SO much Cami and are here cheering you on every step of the way! We can't wait to throw you a big PARTY that you have kicked cancer's butt once and for all! LOVE YOU!