The summer of 2010 was warm, but Todde didn’t feel like swimming. We were wondering why?! On the last week of July Todde and mum were in Oslo, just the two of them. Dad and siblings stayed at home. During the trip mum noticed there was something wrong. Todde didn’t feel like eating at all and was sweating during the night. The day after they returned home, the parents took Todde to see a doctor as they suspected his lack of appetite might be caused by a vitamin deficiency or something like that.
At the doctor’s the rug was pulled from under our feet. The blood test result came back abnormal and we were given 45 minutes to pack for an ambulance journey 300km away. This was on a Friday, and they wouldn’t be able to give us an accurate diagnosis until Monday. That weekend taught us what it really means to be heartbroken.
We were at the paediatric cancer ward in Tampere. We knew the blood test results were extremely bad but we still didn’t have a diagnosis. After a bone marrow biopsy we were told that Todde had leukaemia (ALL). Now that we knew what we were up against, we were a little relieved, we had a goal. The first month would determine the course of future treatments.
Of course we were hoping that the majority of the cancer cells would be removed. On the fourth week there was another bone marrow biopsy and naturally we were hoping it would show that the chemotherapy would’ve killed the cancer cells. This however, wasn’t the case. The chemotherapy hadn’t been effective against the type of cancer Todde had (which was unusual), so we were put on the waiting list for a bone marrow transplant (every parent’s worst nightmare).
What followed was an exhausting course of treatments and we begun the search for a suitable donor. Nobody in the family was suitable even though there is a 25% chance that the siblings’ bone marrow is a match. After that we searched in the international bone marrow bank, a new experience for all of us. Soon we found a suitable donor in Germany and a date was set, which we were all waiting for.
The road to get there wasn’t straight forward what with epileptic seizures, blood poisoning, infections and complications. But we had a lot of good moments, too. For example Todde said it was nice that his mother didn’t need to cook or clean because it meant he could have his hobbies and play all day long.
The first planned date for the transplant fell through as the donor backed out. A new one was found fairly quickly, but even this time around luck wasn’t on our side. During the process it was discovered that the donor was terminally ill. We were back to square one. There was the small consolation of Todde having saved the donor’s life.
Not everyone is as lucky as to find multiple suitable donors, but we were in luck. Third time was indeed lucky and on March 31st 2011 Todde received a new bone marrow. On that day we now celebrate his second birthday; a new chance!
Dad always says “We’ve reached the top of the mountain, now all we have to do is get down safely...” and this is so true. We had focussed on the day of the transplant so much so that we didn’t know, or couldn’t see that far ahead in the future that we didn’t realise how challenging life could be after the transplant. Todde didn’t reject the new bone marrow, but it did cause several viral and bacterial infections due to his compromised immune system.
What followed was long periods spent in hospital when he began suffering from severe depression, he was exhausted with being hospitalised. This was probably the most difficult period during the whole treatment process; our talkative boy stopped talking and his joy was replaced by apathy.
Despite the long journey to get there, normal life resumed little by little. Todde was allowed to spend extended periods of time at home, his friends were allowed to visit him and he got his very own pet rabbit to look after. On his 8th birthday he was allowed to go swimming again (he was about to turn six when he got ill). After being absent from school for two years, he was able to return to his old class, which was fantastic.
Today Todde is doing well, he enjoys playing floor ball and golf. His new bone marrow isn’t quite working out the way it should so every six weeks he’s given gamma globulin intravenously and he is on antibiotics. Nobody could tell by looking at him what he has been through. Todde’s cancer has demanded a lot but also given us a lot, the whole family. It gave us a start for a new organisation, Project Liv, which has been set up to bring joy to the lives of children and families of children with long term illnesses.
Every day we are grateful for each day of good health and the fantastic treatment received from TAYS (Tampere University Hospital) and HYKS (Helsinki University Central Hospital).