Elifsu was born on the 3rd of September 2010. At three months old we had to take her to the first aid because she keeps throwing up. A reflux baby is the quick diagnosis. (The question that keeps going through my head is: Was this really reflux or was this already the onset of what we now know to be the case?).
At age 1 she is still a baby that throws up often but we never gave it more thought than, oh it must have been the milk, and her round belly was just something that was just typically Elifsu. In hindsight it were obviously the symptoms of Neuroblastoma.
Elifsu is mums very own princess and, as she somehow says herself, daddy’s gangnamstyle, don’t ask, two-year-old kids have such creative ways of expressing themselves.
Elifsu has a bigger sister and since the 16th of July 2012 also a smaller sister. Her little brother who was also born on the 16th of July unfortunately did not live longer than 9 days. He had secreted in the placenta and also due to the late response of the ambulance suffered oxygen shortage for 17 minutes.
This is where our horror story starts.
On the 25th of July, Miran dies and on the 28th he is buried. Also the day that mummy (me) returns home from hospital. It’s a beautiful day and Elifsu is playing in the garden when suddenly she is screaming in agony. Daddy feels something is very wrong and he takes her to the first aid. The doctor feels her belly that Friday, I’m then thinking of congestion.
The decision is made to return on the 31st because of all we have already been through for an echo. Then I receive the call I will never forget, Daddy says: We need to go the VU (an Academic Hospital) and please bring some pajamas. This obviously upsets me even more: WHAT DO YOU MEAN AND WHY THE VU? So there I go, in the car with oldest and youngest sister, to the VU. In the car daddy says we need to go to the lump doctor. (how else are you going to understand Oncologist when you have never had to deal with one?)
After a lot of tests and urine sampling, they already tell us they suspect Neuroblastoma (= CANCER, WHAT…. CANCER!!!). The illness hat knows no age as we are about to learn. The doctor is quite positive at that point as he sees a very happy and energetic kid so he believes it will probably be a neuroblastoma of the kind which will go away by itself after a period of time.
They make a MIGB scan and it becomes clear there is a tumor the size of a tennis ball next to the kidney, with only the outer edge still active. The other tissue is dead tissue, and they suspect the pain Elifsu had on the 28th of July was because of a bleeding that started in that area.
Then they do a biopsy and the waiting starts. Will the tumor have a gene or DNA?
I can still see the serious face of the surgeon, Madam, he said, the inside is quite gooey which often means it’s malignant, and there are types where chemo does not work. Why does this man tell me this, I think to myself, the oncologist was so positive? His face and words have since been in the back of my head. A good thing in the end, you have to take into account a surgeon sees a lot of different tumors.
After waiting for the results for way too long, many things went wrong there. The biopt had been ignored, due to the holidays. (WTF…. This is a type which needs immediate attention and treatment, I wont start pointing fingers and blaming people but thoughts did start going through our minds, especially when we got the results by phone!
Yes… by phone… BAD NEWS, THE TUMOR HAS THE N MYC GENE AND ALL RED FLAGS HAVE GONE UP, I’M VERY MALIGNANT! Here the serious face of the surgeon came back in focus. He was right and told us with honesty what he thought it was.
As you can imagine our trust had completely been crushed, as originally they told us it would probably be a type that would go away by itself. NOT!!!!
So we went for a second opinion at the AMC hospital. Not because we doubted the conclusion of the biopsy, but because they let us believe at first all would be ok, and after the very messy and long procedure, waiting for the results and being told such devastating news over the phone.
We found out on the internet that the AMC had a lot of experience with neuroblastoma and the doctors had regular direct contact with colleagues in Europe and US. They wasted no time and immediately started treatment for Neuroblastoma High Risk type 4. Her current oncologist, Mrs Lieve Tydgat, is a very understanding and kind lady, a great help when you are thrown into this rollercoaster.
As the parents of Elifsu we would like to express our warm feelings for taking your time to read our story and we hope to welcome you as the latest member of the Charity fund Elifsu4Life.