It was the beginning of January in 2014 when I encountered one of the worst nightmares for any parent; our child was diagnosed with leukaemia. Ella, who was just about to turn three, had had a bit of a cold since the fireworks on New Year’s Eve. Within the week our daughter had developed a limp and eventually she refused to put any weight on her right foot, so I took her to see a doctor. The doctor thought I was worried about nothing and advised us to visit again in a week’s time even though I had the feeling that everything was not the way it should be.
Thanks to my perseverance, they took samples for blood works. The results however, didn’t come in until the following afternoon. In the health centre the nurse unfortunately couldn’t tell the significance of the abnormal results, and I had to call the children’s ward in Turku University Hospital myself, especially as her temperature had suddenly risen over 39 degrees. Couple of hours after that phone call we were in TYKS getting more tests done and shortly after that we were being admitted to the infectious diseases ward.
My worst fears were being realised as I highly suspected leukaemia based on the results of the blood works and the leg pains even though a doctor I know was trying to tell me to have faith that there might be another explanation. The first night in the children’s infectious diseases ward was wrought with uncertainty and felt crushing as I had seen the order to test our child for acute leukaemia the next morning. The rug was pulled from under our feet that morning; the blood works showed several blasts, so us parents got delivered the heart breaking news that our child was sick with leukaemia. A couple of days later the bone marrow examination confirmed the type of leukaemia to be an acute lymphoblastic leukaemia.
It’s impossible to describe the pain that filled me at that moment. In the middle of uncertainty, we were tossed into the eye of the storm. Our family, home, hobbies, friends, normal day to day life and my job in that same hospital as a midwife... everything was turned into uncertainty, fear and worry and the hospital became our second home and I became a carer for a child with cancer.
While our child was in hospital, the responsibility for keeping things going and looking after our older child fell at the feet of my husband and his mother in those early days. Our everyday life became just surviving from one day to the next. Our whole life had suddenly been turned upside down. Some of those early days are still covered in darkness, even though I can remember the first few weeks in hospital and the worry and pain welling up inside me. We didn’t know what tomorrow would bring, there was no safe haven to be seen from the stormy seas.
In the middle of the storm we found comfort and hope in the support we received from parents of other children battling cancer. From there started a two and a half year long battle against leukaemia. I had no idea then how stormy the seas would get.
A couple of days after being admitted to the hospital, we were finally moved to the paediatric haematology ward. In between blood cell transfusions we were able to pay a quick visit home for our daughter’s third birthday as the cancer treatments could only be begun after an operation to install an infusion port.
At the start of the treatment our daughter presented cancer cells in her central nervous system, so cytotoxins administered frequently into the central nervous system were added to the treatment plan even though the treatments was started off as a low risk treatment plan. First issues arose a couple of weeks after beginning the treatment when our daughter contracted a serious pseudomonas infection which resulted in having to remove the infusion port.
After about a month of treatment, we discovered that we would be moving onto high risk treatments due to the slow cleansing of the central nervous system as well as the rearrangement of the MLL gene found in her bone marrow sample. This marked the beginning of monthly chemotherapy lasting seven rounds. Our life revolved around cytotoxins and blood tests, as well as blood and thrombocyte infusions. Chemotherapy was extremely tough and it presented side effects such as loss of appetite, severe nausea and diarrhea, pain and reoccurring infections. A central venous catheter not working as it should have and unexpected reaction to medication added to the challenges we faced. The chemotherapy also caused severe neuropathy in the legs, as a result of which our daughter lost the ability to walk for the first few months of her treatment.
Luckily, thanks to our daughter’s perseverance and a walking frame she had regained her ability to walk around by the time she finished her chemotherapy in November 2014. The treatment courses were always followed by periods of low red and white cell counts with stem cell injections, which left our daughter vulnerable to infections. We didn’t have a single course of treatment without an infection showing up on her blood works, so we ended up spending a lot of time in the hospital penthouse.
Even though during the last year there have been fewer courses of treatment, the infections have not decreased; they have been lurking behind our backs like pirates in a storm just when you least expect them. Besides receiving preventative medication, out daughter has contracted pseudomonas induced sepsis on five different occasions as well as sepsis caused by other bacteria. Last November, her pseudomonas infection was so severe that during the worst of the seizures, we were afraid we would lose her.
I feel so grateful that our daughter is still alive. This would not be possible without the high level of paediatric cancer care in Finland, the doctors and all the staff at TYKS (Turku University Hospital). We have almost two years of treatments behind us, and after finishing the booster phase we are now entering the maintenance stage of the treatments. Coast is by no means clear yet, but going to hospital for chemotherapy is now over.
On my child’s chest there still is a central venous catheter as well as several scars. In the future the chemotherapy will be administered orally, and hospital visit are required for cytotoxins for the central nervous system. Of course there will be more blood tests and visits to the doctor but at the moment our situation is more or less stable as long as we can avoid our old enemy, pseudomonas infection with the help of the new preventative medication given to us. On the outside, our daughter might look like a child feeling well albeit moving a little clumsily. But the recently lost hair does reveal that our child is battling cancer, and the coy smile hides behind it so many stories, hidden emotions, fear, anxiety and the pain that our daughter has had to go through.
We’ve been living an hour at a time, hoping our child will pull through. We’re examining our past as if we’ve been in the middle of a raging storm and now have finally made our way to calm waters. In the eye of the storm you only live one moment at a time. No matter how dangerous things got, there was always some instinct that helped us navigate our way through no matter what. Getting to this point has been mentally exhausting, but we are lucky to have joyous moments in the mix, as well.
Our daughter’s perseverance has helped carry us through the treatments. We often heard the Risto Räppääjä’s song in the hospital saying “We can make it, we can make it, we can make it for sure”*. Now I can at least every now and then breathe a sigh of relief and believe that we can make it through this battle, all the while aware that many little soldiers on the same journey have had their lights extinguished.
THERE IS HOPE – THERE IS.
*Translation by Minna Mäkinen