Eline: “Unbelievable, baby Mace had to be admitted to the cancer ward immediately”

The scan is intense, very intense. Mace panics every time the helmet is placed over his face. He doesn't stop crying until the end when I can hold him again. Sweaty, shaking, bright red. I don't need to tell you what that does to a mother's heart.

So many questions

After the scan, the doctor who follows the images comes to us. He says that he has spoken to the pediatrician on the phone and they will call us tomorrow. “Is this good? Is this bad? Is this normal procedure?”, I wonder. We have no idea. So vague again. We go home without any expectations and remain in great anxiety. The impatient mother in me suddenly realizes that the nursing staff at the hospital gave me login codes to access Mace's medical information online. “Could there be something posted already?”, I think to myself. This is probably the worst decision I've made in a long time.

Difficult words

I log in and see the images. Images that I naturally can't make sense of. There's also a report. I open the report and am overwhelmed by difficult medical terms and sentences that don't even seem Dutch. I pick out a few words: “abnormal”, “enlarged”, and “cyst”.Oh my god. So they did find something after all.

Deviations

Little Mace has something in his head that really shouldn't be there. My mind is completely short-circuiting. I go outside. Not yet knowing where to go or what I want to achieve, but I can't stand it at home anymore. Eventually, I walk to a friend nearby to get some air. There, I decide to send the report full of difficult language to a friend, who is also a nurse. She translates the document for us into layman's terms. Horrible. This is undoubtedly going to be the longest night of our lives. We won't get a call from the pediatrician until tomorrow to hear her perspective on the facts. I decide to keep Mace close to me tonight.

Waiting for the phone call

The morning actually flies by. Our Lewis is not feeling well and is throwing up everywhere. It's a good thing he stays home with me. The perfect distraction. At 8.30 am I call my paediatrician's office hour myself. She says she looked at the images last night. She is already in contact with a paediatric neurologist at the specialist hospital to consult. They have a phone meeting scheduled and she will call me back afterwards. At 9.30 am we get the call. We must drive to the hospital immediately. There is an unknown mass in Mace's head in a place where nothing is supposed to be. We don't get any more information. The paediatric neurologist is waiting for us at the hospital. They want to monitor Mace 24/7.

Arrived at the hospital

We arrive at the emergency department of a gigantic hospital. Unbelievable. At the reception desk, I get a bit annoyed. The lady asks a lot of questions, calmly at her leisure. She doesn't really know what we are here for and it's getting on my nerves. However, things suddenly move quickly. We are taken to a room and a paediatrician comes in immediately. Such a kind person. He says he can't give us the answers we're looking for, but he wants to briefly examine Mace anyway. Without any further information, the transport ladies come to pick us up and we are taken to the department.

Oncology

The next doctor provides clarification on where we are: oncology. Just the word alone brings tears to my eyes. She says that this is the procedure when they find a tumour. The doctors don't know yet whether it's benign or malignant. The floor drops from under my feet. Admitted to 'oncology', my child. That afternoon we are overwhelmed by paediatricians, paediatric neurologists, paediatric oncologists, a neurosurgeon, and an ophthalmologist. Each time we have to tell our story and our findings again. They clarify a bit each time what they see and what might or will happen.

The preliminary facts

Little by little, we will learn more. For now, we only know that we are at the hospital and must stay there for several days. We also know that Mace will undergo many tests. We already know that there is a tumour pressing against his brainstem. We learn that the brainstem controls our entire body, including our breathing and our heart. Mace has to be monitored 24/7. They do not want to take the risk that the pressure on the brainstem becomes too great and he gets into trouble at home. We also know that a new brain scan with contrast fluid will need to take place. And that the surgeons may want to take a biopsy. Furthermore, we will remain in uncertainty for a while.

Stronger than ever

We are trying to stay stronger than ever. Mace doesn't benefit from having a mum or dad who is down in the dumps. We are letting it happen and trying to support each other where we can. We also notice the enormous support from our family and involved friends who are waiting at home for news. And they are keeping their fingers crossed with us for a good outcome.

ELINE