Pihla had an ear infection in the spring, for which she was prescribed a course of antibiotics, but her temperature wouldn’t stay down and she was very pale. I blamed the fact that she wasn’t well. On the Sunday of that week, she suddenly lost the feeling in ther legs and was unable to walk or stand. We headed straight to the A&E. The doctor examined Pihla and said that she didn’t seem to be in any pain and scheduled blood tests for the morning.
I spend the night on the floor beside Pihla’s bed waiting for the morning, knowing this was something serious. I had googled rheumatism in children and based on the symptoms, there were too many similarities with leukaemia. Well, in the morning we took a trip down to the lab and before we even got back home we got a phone call asking us to go back to the doctor. Pihla was examined and the doctor gave us a referral to the paediatric ward in TAYS (Tampere University Hospital). I felt foggy, dizzy and nauseous. My body felt limp and it was difficult to move.
At TAYS in the doctor’s office I lay down on the examination table and tried not to pass out. They were putting in an iv drip, took Pihla in for a scan on her chest and an ultrasound on her abdomen. Nobody said anything about what they were suspecting. We were moved to the clean lobby to wait and from there we were moved to the paediatric haematology and oncology ward where an experienced doctor came in to finally tell us what they were suspecting. The next morning brought her straight in for a general anaesthetic to install a central venous catheter and the first course of medication. Oh, and the bone marrow biopsy.
The diagnosis was confirmed and we were there to hear it. The doctor told us that the bone marrow was very cancerous. We were in a hurry to get out of the room and to see Pihla. We talked about our situation in small doses throughout the beginning of the treatment as it is hard to take in information when you’re in shock.
Pihla started moving on all fours during the next three weeks, then standing up with support and soon after she was walking normally. The loss of feeling in her legs was due to the bone marrow being so full that she was only able to walk once the bone marrow was cleared. The beginning of the course of treatment went well, in the two week sample of the bone marrow only 0.01% showed up diseased and at the four week mark the same result was 0.00%. She was on antibiotics for a while with an elevated CRP and a high temperature.
Despite responding to the treatment well, Pihla had to undergo some high risk treatments as the cancer cells showed a gene which required more aggressive treatment. The prognosis was worse at around 50%. The course of treatment was extremely aggressive and brought along with it several bouts of blood poisoning and different types of viral infections.
Pihla had no appetite has been fed through a tube for two years now. First with a naso-gastric tube and now with a PEG-tube. Next we’re facing into a booster course of treatments which will last for six more months.
We’ve gone through some huge emotions along the way. When Pihla got ill, her little sister was three months old and had to spend a lot of time with us at the hospital. As a mother, I’ve always missed one of them, depending on which one I’m with at the time. Now as we’re in the maintenance phase, it’s wonderful to be able to spend time with both of them at the same time and the 2-year old is a fantastic little sister to Pihla while Pihla is a fantastic big sister.
We would not have gotten through the treatments without a brilliant support network, for which we feel blessed. We can never repay the effort they have put in for us, we can only be grateful.
The emotions have been running high. In the middle of such shocking events we got so much pleasure out of the little things in life, and we appreciate absolutely everything so much more than we used to. We’ve experienced a lot of anxiety and other negative emotions. Those led us to a break up before the treatments were finished, which has been difficult but despite that things have gone well and we are anxiously awaiting for the treatments to be finished. It’s getting easier to have faith in the future and hope that all will be well.