Unique stories
Happy ending for twins Laura and Emily
After a trouble-free pregnancy for twins, I delivered my identical twins Laura and Emily as planned in the 39th week of pregnancy.
Everyone told me that the girls were very cute and that they had such wonderful eyes.
They were real dolls.
The girls were perfectly healthy, had no problems adjusting and were at a perfectly acceptable weight.
Our luck was perfect.
At last we were complete, a family of four.
November 24, 2012 was the day our world started to get out of hand.
My girls were just 9.5 months old.
A few days earlier, I had seen something flash in Laura’s left eye, once, so quickly, so like a flash, that I thought it was just an oblique flash of light.
On Saturday, November 24, 2012, Grandma’s birthday, Laura was sitting on my sister’s lap and playing Hoppe Hoppe Reiter.
Suddenly I heard my sister say to my mother in the kitchen: “Mom, I saw something in my left eye, a yellow glint. You need to see a doctor straight away.”
She had read an article in a magazine (Spiegel, Stern or whatever) about a rare tumor in infants that would be just as noticeable in the eye.
I remember that I objected: “Oh nonsense, we’ve had all our check-ups so far and the paediatrician looked both children in the eye at their last check-up 6 weeks ago.”
And I had read in some pregnancy guides at the time that this glow should be permanently visible, and especially in photos. But that wasn’t the case with us … or so I thought…. Since both my sister and my mother kept pestering me over the weekend to call the pediatrician, I finally did it. So that they would shut up… so that we could be sure that there was NOTHING there….. The appointment was then on Thursday morning, 29.11. Of course, the pediatrician couldn’t see anything with his harmless flashlight. He later told us that he had never heard the word “retinoblastoma” before, but remembered from his studies that the professor had said: “If parents ever come to you with exactly these symptoms, send them to an ophthalmologist IMMEDIATELY”. He gave us a referral to the ophthalmologist with the note “Examination for retinal changes”.
From then on, everything happened very quickly.
The ophthalmologist saw nothing in the eye in its normal state.
She dilated both pupils and then she saw “it”: “A yellowish substance in the left eye, next to the optic nerve, which doesn’t belong there!”
Then: “I have to refer you to the nearest university clinic.”
Not a word about eye cancer, let alone retinoblastoma.
But after speaking to the university clinic on the phone, she didn’t come back to us.
One of the receptionists came to us and gave us a note with the appointment at the University Eye Clinic in Bonn on November 30th.
We shouldn’t worry and just go there the next day.
And it was best to take the twin sister with us.
When we went out and I saw the ophthalmologist in a quiet corner, turning her back on the public, I began to understand that the expression “don’t worry” was just a phrase.
After a restless night, my mother and I – my husband had to work – drove to the eye clinic in Bonn.
Numerous examinations followed: a doctor looked into the wide-dilated eyes, an ultrasound of the awake child’s eye, an examination by the senior physician and a first eye test.
Then came the statement that I will always resent Bonn for: “We have to examine your daughter under general anesthesia on Monday to make a reliable statement. It is most likely a small retinal detachment. Take a bag of things for yourself and the little one. If we can fix it, you will need to stay overnight.”
I believed this statement for exactly 10 minutes, until the moment I read “probably yellow tumor in left eye” in Laura’s chart while waiting for the anesthesia to clear up.
I still wonder today why, if they already knew, they didn’t refer us directly to Essen, but had us come back on Monday.
Monday was the anesthetic in Bonn.
After about an hour, an assistant doctor came to us and told us that Laura had a left-sided retinoblastoma.
This was a malignant, fast-growing tumor.
At that moment, I was on the edge.
The optic nerve was healthy.
She would probably have chemotherapy and radiotherapy.
The treatments would cause her to lose the sight in the affected eye – one step closer to the abyss… And then I fell into the abyss: “You need to have the twin sister examined too. It’s likely that she has it too.”
We were sent to the university clinic in Essen for further examinations and treatment, the specialist clinic for patients here in western Germany with this tumor.
So we drove on as soon as Laura had woken up from the anesthetic and had eaten something.
Essen picked us up again and put us back on our feet, and not just figuratively speaking.
After hearing a brief outline of our story, the assistant doctor there gave us his first encouraging words: “This is finally a case whose speed between first being noticed and finally arriving here in Essen (10 days) is exemplary!”
We had our first anesthetic appointment the next day.
Dr. Holdt, the specialist at the time, confirmed the findings of the retinoblastoma on the left retina.
The tumor was 8.41 mm in size at the time and was located on the nasal side of the eye.
The optic nerve was exposed.
All the prerequisites for eye-preserving therapy were met.
He showed us that the tumor would first be treated with chemotherapy until it was small enough to be treated with brachytherapy (local radiation treatment using an applicator).
This would probably take about 3 chemo blocks.
This initial prognosis was then confirmed by the tumor conference and an MRI.
As there was no sign of another tumor at the time, the doctor was pretty sure that the probability of Emily having the disease as an identical twin was somewhat increased and that she would of course have to be examined under anaesthetic in the near future.
But since the disease had not yet occurred in our family, it was not very likely that Emily also had it.
At the interim examination before the start of the second chemo, it was certain that Laura’s tumor was reacting to the therapy.
The tumor was already almost half the size it was before.
And to make our luck perfect, we received the news that Emily was healthy.
For 1000% certainty, a human genetics test was initiated, which after a year also gave the result of non-hereditary retinoblastoma.
This reduces Emily’s risk to that of a normal sibling.
Laura was examined before each chemo block.
And the tumor shrank and shrank.
Until no more change was detected before the 4th chemo treatment.
Now the time had come for brachytherapy.
Because of the size of the tumor, 4mm, we stayed in isolation for almost exactly 1 week.
A time that Laura didn’t sleep through, but woke up in the morning like at home, played, ate, played pranks, bathed….
In fact, except that she wasn’t allowed out and led a completely normal life.
If a doctor or nurse came to visit and forgot to close the door, she would immediately run to the door and close it again.
A quirk that has stayed with her to this day.
The port that was surgically inserted for the chemo infusions has been out again since July 8, 2014.
Our children are both living the normal life of a four-year-old.
They have been going to nursery school for almost 2 years now, the first opportunity to start since Laura was fully vaccinated.
In the fall of 2013, we were able to realize our dream of baby swimming… Or should I say toddler swimming?
Since the children’s second birthday, I have gone back to work, with a half-time job.
As far as we can tell today, Laura has had no long-term side effects from the therapies so far.
For us, the drama had a happy ending. After the end of the therapy, it quickly became clear that the rapid prognosis from Bonn that Laura would lose her sight in the affected eye as a result of the therapy was not correct. Essen never mentioned this, by the way, only as a possible risk during brachytherapy. In December 2013, we visited the vision school in Essen for the first time. Then it was official: Laura could still see, and relatively well thanks to the good position of the tumor. We were able to train the worse eye by taping the healthy eye every day – 2 hours at a time. She had problems with this at first. She was afraid of sliding in the playground and walking on walls. But you could see that her self-confidence grew with daily training. And then, with the next check-up in Essen, came the next vision school. A significant improvement in her vision was noted. The issue of glasses was initially put on the back burner and we were allowed to continue taping. Every day ….. for six months. Laura was now threading beads with needles and thread. On the day before the port removal, we received the redemptive result: please continue taping, we can now go to vision school at home. Since mid-September 2014, we no longer need to tape. When testing our 3D vision, it turned out that both eyes are now equally strong!!!! She passes this eye test, which everyone here is probably familiar with, in which you have to recognize (in her case, name) small pictures on a distant wall, with flying colours. She recognizes pictures at a distance where I can only guess what is depicted. And I don’t need glasses. In the meantime, we have arrived at a control distance in Essen every 5 months. Next time we will try to examine her without anesthesia. I’m curious to see how well that will work!
Thanks to Mother Sonja for this beautiful contribution!