I've been blind for most of my life, due to retinoblastoma, a rare form of aggressive eye cancer, which can spread to the lungs, brain and bones, and, which only effects children under 8 years of age.
When I was 12, a blood sample was taken which was said to prove that I couldn't pass it on to my children and, since I had received that information, I never looked it up. If I had taken the time to google it, I would have healthy children today.
My eldest son is 14 and, was lucky enough to escape the RB-gene, which of course confirmed what I already knew, there was no heredity...
He did how ever get a bad genetic draw anyway and, was born with cataract, which means that we've had frequent contact with different eye clinics throughout his life. Never in all these years have anyone suggested to me that the information I had was wrong, though they have checked his eyes for tumors anyway as a part of his regular eye examinations. Just to be on the safe side.
I wanted to give him siblings, but unfortunately, life don't always turn out the way we plan and, when my son was going on 7 years, I gave up on the idea. I even did a pretty good job of convincing myself that I didn't want any more babies, now that my boy was getting more and more independent by the day.
Until they found a benign, but quite large tumor in my uterus, which could offer a possible explanation to my premature contractions and deliveries as well as my early miscarriages and, I found myself longing for a baby, even as I refused to admit it, caught as I was in a memory of a fragile little body turning cold in my hands and, tiny little hands and feet that would never get bigger.
Many people, including that earlier version of myself, just don’t seem to understand that when you want to have a baby, you REALLY WANT TO HAVE A BABY. It’s like your whole body aches for it, and screams for it. It’s nagging and painful and impossible to ignore. I guess unless you’ve felt it, you don’t really know.
I wasn't in a place where I could consider having more children until I met B online when my son was 10 and, though it would be another year before he crossed the ocean in pursuit of our dreams and, 2 more years of detours and, "what ifs" before he was finally living here, legally and with a residency permit, we were finally ready to try to make our fairytale complete come fall 2010.
I got pregnant right away and, we were cautious enough not to tell anyone , just in case things didn't work out, but we were hopeful just the same and, we were able to relax more and more as the days were slowly ticking by.
B was just about to tell his family in Iowa the news, but at 16 weeks I started having contractions and, from that moment I was on bed rest off and on throughout the rest of the pregnancy, so he didn't even tell anyone except his sister, until we had our rainbow baby here safe and sound.
Our little miracle was born in May 2011 and, as he was in a bit of a hurry to join us and, arrived via c-section 6 weeks early, we spent his first 11 days in the Nicu. While there, I asked for a referral to the eye department, so that they could check his eyes for tumors, just to be on the safe side...
We got his appointment for a first eye examination when he was 8 weeks old and, according to the doctor, there were no signs of any dreaded malignant tumors They would just follow standard procedure and schedule another appointment in a year.
3 months later, I got a phone call from the same eye doctor, where she said that she had spoken to a specialist from the eye hospital in Stockholm and, that she needed to examine our little miracle again as soon as possible. A nurse would contact us in a few weeks, as the examination required that he'd be under anesthesia this time.
I later learned that she would never have been able to do that first examination, since there's only one hospital in this region where they are allowed to put babies under 1 year of age under anesthesia, so what she should have done was to refer us to that hospital.
Instead I received another phone call, from another eye doctor in about a month and, it turned out that the "standard procedure" would be quite different from what we had been told and, experienced with my eldest.
Our little rainbow would have to go through an EUA every month until he turned 1. Every other month until he turned 3. Every 3 months until 5 years of age and, then every 6 months until his 8th birthday.
"I'm sorry, but it's been scientifically proven, that Since you yourself had the cancer in both eyes, there's a 99,4 % chance that you carry a gene mutation, which could cause your children to develop the retinoblastoma as well."
But it had also been scientifically proven that I didn't carry the gene mutation... Or had it not?
At first I suspected that my parents had somehow come to their own conclution just because my siblings didn't run the risk of getting the same thing and, nobody in my family had ever been diagnosed with Retinoblastoma before. I remember having the test taken, but my medical record only shows that the test was taken to clear my brother and, I was too young to remember anything but that the doctor said that the test showed that we didn't have to worry. But I recently found out that an acquaintance of mine had been told the same thing, there was no heredity. This, even though she had also had the tumors in both eyes, which is synonymous with having the rb1 gene mutation that can be passed on to one's children.
Either way, our lives had now been turned upside down as effectively as if a tsunami had come crushing in over us...
I had never been curious about the eye cancer. It was just the reason that I had lost both my eyes. Something that I couldn't even remember and, as natural as the blindness itself and, only interesting because of the stories my mom and dad told me about what a little warrior princess I had been.
Other than that, I knew that I had been crying and, asked them over and over to turn on the light after that last time, when they had realized that the radiation treatment wasn't helping and, finally decided to remove my right eye as well. The left one had been taken right away to prevent the tumors from spreading along the optic nerve to the brain. .
I had also heard about how they had to chase me down the corridors of the children's oncology clinic and, how they could barely catch me even though the sedative I had been given to calm me down before the anesthesia had me staggering like I was drunk.
The story of how I had always asked for my bottle as soon as I woke up in the recovery ward was often told as well and, I knew that I had been drinking from life in much the same way I once drank from that bottle ever since that day when my mom decided not to be overly protective of me, when she found that I had climbed on my rocking horse and was standing up on it's back, even though my world had been turned into darkness only a couple of months earlier.
From that day I was a survivor, a winner, competitive perhaps to a fault as a child. It was just something that I had accepted as a part of life and who I was.
I would love to be able to draw upon that certainty of my own invincibility now, when I spend my days waiting for the cancer to hit.
I do have some blurred memories of the hospital in relation to the tumor they found in my leg when I was 3. but it was always said that there was no connection between that and the retinoblastoma. Something, which have turned out to be another piece of misinformation. 50% of those who have the rb gene develop some other type of cancer before their 50th birthday.
I don't remember the pain, but they had blocks that one could build into a car big enough to ride around in the waiting room. I always wanted one of my own and, I even looked for something similar for my son, but I never found it.
Other than that I don't remember anything, except the mask. I remember how I hated and dreaded that mask...
I remember the nasty smell and, the panic when they held me down until I fell asleep. The same panic I felt when I saw them do it to my 7-month-old baby recently and, I know why that little girl fled down the corridors of the pediatric oncology ward...
If I had googled it earlier, I could have read that all children whom get the Retinoblastoma in both eyes have a gene mutation, which automatically means that there's a 50-50 % chance of passing it on to their offspring, but I never did, since I already thought I had the answer.
Instead I received the worst shock of my life in January his year, when my 7-month-old was diagnosed with the disease.
As I'm writing this, 5 months after he was diagnosed with the cancer., my little Joshua is cancer free. We have been lucky, the tumors were small and, far away from the optic nerve and, have not seriously damaged his eye sight. But our journey is far from over. They will have to keep examine him every month to make sure that the cancer doesn't come back and, an MRI will be done every 6 months to make sure that no tumors are forming in his brain.
Also, since his genetic code is damage, and the rb gene is present throughout all the cells of his body, he'll always run a high risk of developing new tumors.
But there is hope... There is always hope...
****
Our little miracle is now almost 15 months old, and today, at the 16th of august 2012, it has unfortunately been confirmed that one of the tumors in his right eye is once again acctive. It is still small however, and will at present be treated with laser therapy. We're of course very sad, we were so wishing that those terrible months of chemotherapy would have been enough to get rid of it all together. But as always, we remain hopeful.
