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Member of the Month July 2023

Niko Bolke – Carver

On the 18th of February 2022, Katie & Timo’s life was flipped upside down when they encountered a parent’s worst nightmare. Their Little boy Niko, who was only two years old at the time, was diagnosed with B-Cell Acute lymphoblastic Leukaemia (ALL), a type of blood cancer. After confirmation of his diagnosis, Niko was quickly transferred to Great Ormond Street Hospital for Children (GOSH) to start his treatment. 

So far, Niko has received three lifesaving blood and platelet transfusions and has been in theatre for different procedures ten times. These theatre visits have been for essential lumbar punctures, bone marrow aspirations, biopsies, and chemotherapy infusions to help eradicate any existing Leukaemia cells and hopefully avoid them spreading to the spinal cord or his brain. Niko’s second theatre visit was to have a port-a-cath fitted, which will stay in place for the next few years until his treatment is complete. Niko’s parents were told to expect Niko to have a minimum of 13 rounds of chemotherapy. Each round includes chemotherapy drugs administered as an outpatient in hospital, theatre visits, injections, and a very strict medication schedule to be followed at home including oral chemotherapy. 

“Within such a short space of time, [we] have already been through so much. Due to the intensity of the treatment, Niko has been very weak; he became completely immobile and required assistance for everything, even to be able to remain in a sitting position. Considering he was a very strong-willed, independent boy before Leukaemia, this wasn’t easy for [us] to digest and adjust to. He lost his hair, was sick after every meal, every day for weeks, and ended up with extreme mouth ulcers, internal anal fissures, blisters, and extreme constipation.” 

After easing on the treatment slightly, Niko has regained some mobility and has learned to walk again. He is gaining confidence and can now go up and down stairs and run and jump; he has become aware of his limits and as soon as he gets tired, he says that his legs are getting “wobbly” or that he wants to sleep.

Despite having days that are extremely emotional, days of him feeling very poorly and drained along with him getting anxious as he is unaware of what the people in masks (doctors or nurses) are going to do to him, Niko is generally a happy boy.  He is now getting used to his medical team and goes to hospital happily.

Niko and his family now have more of a routine in place. Now that Niko is in his maintenance phase (the longest phase of his treatment), they don’t have as many planned inpatient stays in hospital. Unfortunately, this doesn’t mean that there aren’t any, and if Niko spikes a fever of 38 degrees celsius or above, Niko has to be in hospital within the hour to start treatment. 

Through all of this, Niko’s family try to make the most of the good days and keep Niko and his little sister smiling as much as possible.

Beads of Courage UK have played a huge part during this journey. When Niko was first diagnosed, as he was only 2 years of age, he didn’t seem to show any interest in them. A few months passed and he really started to enjoy seeing them and identifying the colours. Now, Niko shows his beads of courage off on every occasion possible and to anyone who is willing to look. He knows what most of the beads represent and as a family we agree that they are an amazing visual of the journey that he has already endured. Niko now ensures that I have the list of beads ready for his clinic visits so that he can help collect the beads he has earned and add them to his already huge collection. I now thread Niko’s beads in chronological order so that they tell his story day by day, and have also started purchasing additional glass beads from Lampwork Bead Makers, adding these to his BOCuk so that not only does it show his oncology journey but also adds a little personal touch and reflects special occasions or adventures that we as a family have had together (for example, he has a Bluey one from his birthday party and a Lego brick from when we were gifted a family day out last year.)” – Katie, Niko’s mum

If you wish to follow Niko and his family’s journey, you can follow them on Instagram, their account is @ourlifewithleuemia

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