October 12, 2010 changed our lives forever. My son Jacob was born on March 5, 2010 weighing 8lbs 3oz.  My husband and I were so excited to become parents.  We tried for nine months before we got pregnant.  The six months before Jacob was diagnosed with retinoblastoma we did not have any concerns with Jacob’s health. He was gaining weight and any developmental goals for that age were being met.  At times, we did notice his left eye moving inward or just all around.  Everyone kept telling us, “oh it’s probably just a lazy eye.”  We also noticed in pictures that Jacob’s left eye had this white glare but we didn’t think anything of it at the time.  We have never known anyone with retinoblastoma or what to look for if we thought he had it.  We took Jacob for his four month check-up and our new pediatrician recommended we see an Ophthalmologist.  She did not say what it could be, but just that it would be in our best interest to see one before his six month appointment.  I made the appointment, but they could not see Jacob for two months.  If I knew at that time what they were going to tell us, I would have argued for an earlier appointment, but our pediatrician did not make it sound urgent. I still thank her every time I see her for telling us to see an eye doctor.         
 
Now it is October 12, 2010 it’s my husband’s birthday. He’s off because of Columbus Day and takes Jacob to his appointment.  I was sitting at my desk at work when I got the phone call.  I remember it like it was yesterday. The eye doctor confirmed that it was retinoblastoma and that we needed to see Dr. Carol Shields right away. I left work immediately thinking there is no way my baby has cancer. Even when Jacob’s eye doctor called me that night to talk to me about cancer and what the next years would be like, I still didn’t believe him.  The following week we took Jacob for his first MRI.  I was still in denial about it all even as they took him back. I felt like I was out of my body watching someone else go through what we were going through.  Later that week, we went to Will’s Eye Institute in Philadelphia and met with Dr. Shields and her team.  They confirmed it was bi-lateral retinoblastoma; Jacob had tumors in both of his eyes.  The only good part of those few weeks is that the cancer had not spread to his brain or spine.
 
The following week they scheduled Jacob for his first eye exam under anesthesia (EUA). After Dr. Shields examined his eyes, she explained to us that his right eye was a C and his left eye was a D.  With those results Jacob would have to go through 6 months of chemotherapy, which consisted of 2 days a month of chemo, weekly blood work, and monthly EUA.  During his EUA appointments, Dr. Shields would freeze, laser, and at one point she had to cut into Jacob’s eye to reach the tumor.  Jacob also had a port placed a month after his diagnosis.  After Jacob’s first round of chemo, he got a fever and we spent a week at Nemours Children’s Hospital.  That was the longest week of our entire lives.  We needed Jacob’s white blood cell counts to rise to a normal level before we could take him home.  The beds for children in that place are just awful, a metal cage they expect him to sleep in. Still at that time I couldn’t believe this was all happening.  We had all these plans and now they had to be put on hold for how long we didn’t know.        
 
Jacob handled chemo well, he did have to receive two blood transfusions but never had to stay overnight in the hospital again.  After the 6 months of chemo was over I felt like now what are we supposed to do.  Will the cancer keep growing?  On May 5, 2011 we went for Jacob’s sixth EUA, we received the best news after that appointment.  Dr. Shields told us that all of Jacob’s tumors are dead and he is in remission.  Jacob also didn’t need to be seen by Dr. Shields for the next three months.
 
We enjoyed our summer taking Jacob to the beach for a week and doing as much as possible with him, it was time to relax for a moment.  The relaxation ended on August 31, 2011.  Jacob was back at Dr. Shields’ office for his EUA.  I actually thought while sitting in the waiting room we have nothing to worry about, we’ll go out to lunch after he’s done, we won’t have to come back for another 3 months. I was wrong!  Dr. Shields told us that a new tumor “seed” was growing in Jacob’s left eye. I just felt like someone ripped a band-aid off of me and an old wound opened.  I think I even asked her if she was sure it was Jacob.  Dr. Shields was positive that with the freezing it would die but we would have to follow up with her for the next two months.  I was heartbroken. I went out in the lobby and just cried and cried.  My poor baby has to go through all of these treatments and I can’t even tell him why he is going through this.  It also showed us that day that cancer will never be gone, it will always be a part of our lives.  It was just heart breaking to know that Jacob was no longer in remission.          
 
Dr. Shields asked that Jacob see his eye doctor before his EUA in October.  My husband took him and the eye doctor confirmed that Jacob, in so many words, is blind in his left eye. His right eye is his “good eye” meaning that his right eye is the eye he uses to see the world.  Jacob will have to wear protective glasses one day so that he never loses his vision in his right eye.  The eye doctor was also happy that his left eye still responded to light, which means Jacob does try and use it.  He said some kids won’t use the blind eye and that eye will die which if that happened, it would have to be removed.  I hope this never happens. Jacob will contiune to see Dr. Shields until the age of 5.  He will also need an MRI every 6 months until the age of 5 to make sure the cancer didn't spread to his brain or spine.  Jacob runs the risk of other types of cancer as he gets older, but we hope this will never happen.
 
I want to end this on a good note.  My son is amazing.  He has been through so much and he is only 18 months old.  He doesn’t know the lives he has changed but he will one day.  He is not only my hero, he is a hero to everyone he comes into contact with.  Jacob loves playing outside, chasing our dog Marley, eating, talking and boy does he love to dance.  I hope all of our children who suffer from cancer continue to dance the rest of their lives.  I hope like any other family whose child has cancer, that there will be a CURE one day and no other family has to hear the words “Your child has Cancer.”   Love to all of you, Lisa, Evan, and Jacob.
 
Written by the Kallish Family
September 2011