Our eldest, Roope was born on May 5th 2011. His little sister was born on November 11th 2012. We had a normal life of a family with two children. My husband worked and I looked after our children at home
In the beginning of 2014 we moved into a new apartment. Up until then our children hadn’t been sick much but now they begun to get ill more frequently, Roope in particular kept getting feverish and had colds. We were thinking that the apartment may be damp. At the end of March Roope developed a limp on his left leg. This was surprising as Roope hadn’t hurt his leg anywhere. Roope only wanted to be carried around as he didn’t want to walk and even playtime was unusually subdued. At home Roope could spend the day just lying down on the floor.
In the beginning of April we went to our local health centre because of the limp and the doctor there referred us to the paediatric unit for more examinations at KAKS (Kainuu Central Hospital). Roope had elevated CRP values even though he wasn’t sick at the time. In Kajaani he got an ultrasound and images taken of his hip. We were admitted into the ward. The doctor said that rheumatism in children can sometime first occur this violently.
Soon after rheumatism was excluded as a possibility. We spent about a week in the ward and went home with a course of antibiotics and a suspected infection of the bones. Roope was feeling a little bit better. In the beginning of May we were able to move into a new apartment which saw an end to our children being ill.
It was June. I married my now husband on June 7th, on Roope’s name day. I was so happy, I had a wonderful husband and two healthy children. After mid summer Roope started complaining of a pain in his leg again. I called the paediatric unit on the same day and we got an appointment for the following day. We got an urgent referral to OYS (Oulu University Hospital).
On July 4th Roope was scheduled in for an MRI scan first thing in the morning. We were still thinking this was a case of an infection in the bone. Soon after they told us that something was showing in the scan and that they couldn’t rule out malignancy. I asked do you mean cancer? The answer was yes.
The unltrasound revealed a large tumour in the upper abdomen, 7.5cm x 6.7cm x 9.3cm. Also a smaller metastases sized 5.1cm x 6.7cm x 5.8cm. They suspected Roope had neuroblastoma. We were able to go home for the weekend, but had to return to OYS ward 51 on Sunday.
After several examinations it was confirmed that Roope had a metastatic neuroblastoma stage 4. It had spread into his bone marrow and was present in several places in his bones. The treatment began as soon as the diagnosis was confirmed.
Before Christmas 2014 we were told that the treatment hadn’t worked as well as they had expected. The bone marrow still showed signs of the illness. We had to start thinking about different treatment options that would slow down the progression of the disease. Roope’s tumour and metastases were successfully removed in an operation at the end of January 2015.
Roope received a few extra courses of chemotherapy, but his gone marrow would not get clean. At the end of March we began palliative care.
In May we had another bone marrow biopsy. A couple of days later we got a phonecall saying that the disease was present in a sample that had previously been clear. We were urged to travel to all the places we had planned on visiting because we could not be sure for how much longer Roope would be able to do this. I remember crying in the swing in the back yard after that phone call as I was watching our children jumping on the trampoline. How can this child be so ill? He was full of life.
Next week we got a phone call from Oulu. They told us there had been a miracle. There were no signs of the disease in the more detailed samples, so we could continue on our course of treatments! In the beginning of June we went in to OYS for stem cell harvesting. After mid summer we were admitted to the ward for an autologous stem cell transplant. Roope was able to come home towards the end of July.
In September 2015 we began radiation therapy. Roope received radiation 14 times and the treatment was administered without general anaesthetic as Roope had showed great courage during the planning stages. How proud I was of my little fighter.
In the beginning of Ocotber we underwent treatment response evaluations for about a week. The disease had stayed away, even from the bone marrow! It felt incredible to finally be at that point.
The Roaccutan treatment is still ongoing for another few months. In January 2016 we have the next scheduled bone marrow biopsy. All we can do is hope and pray that this disease has finally left our child alone.
At the moment Roope is doing well. His hair has started to grow back, dark this time. We can spend time at home with the whole family. The doctor has also permitted us to move around more freely as his blood test results have been ok for a while now. If all goes well, our family will get another member in the spring. Roope and his little sister will get a baby sibling, expected in May. My due date is the same as when I was expecting Roope; May 20th.