Memories of Max - A Father's Story

Chapter 2 - The Unit

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We also collected his stools and took them to the sluice room so they could be examined. The nurses checked their consistency, or for traces of blood, or any other indications of complications. If Max had a fever then they would be taken away and analysed for the presence of an infection.

We administered Max's oral medicines. At the worst point in Max's second treatment , and while at home, I was giving him thirty one doses of various medicines during a day which could in itself be quite exhausting. These were a mix of tablets and liquids. There were specific times that they had to be given and it could become complicated if a dose was refused, forgotten or delayed because of sickness. Max’s refusal to take medication became very wearing with this many doses. This was because the lack of time before the next dose and the implication of not taking medication. If the delays were too long then I ended up not having enough hours in the day for him to take the doses within the allotted period. This then meant that I would have to wake him at night. Sometimes the drug regime also required that the doses be given at night anyway and this led to further problems.

Max quite understandably used to be indignant at being woken to take medicine. His life had totally been invaded by his cancer, and to have his already disturbed sleep interrupted for more medicines was often the last straw.

In addition to the medication, and while at home during his second cancer, there was the twice daily ritual of cleaning his line and dressing. Max had an intravenous tube which passed though his chest and beneath the skin up to his shoulder and then down towards his heart. The line, known as a Hickman line, is used to provide the child with chemotherapy or drips and also enables the nurses to inject drugs into the lines and withdraw blood samples. It contained three tubes which joined to form the single tube that passed into his body. The insertion of a Hickman line requires an operation, but once in place children adapt to it very quickly.

I hated flushing Max's line. At the hospital I twice watched him sinking towards coma after a line infection and this left me very nervous of this procedure.

The point at which the line enters the child's chest consists of scar like tissue which seals the line against the body. This area is covered with gauze and has to be kept very clean because it offers an entry point into the body. It is especially important that no infection occurs, because children undergoing chemotherapy lose the ability to fight illness during their treatment. The tubes themselves also have to be kept sterile and are flushed regularly during the day to keep infections at bay.

In the Unit the Hickman lines were known as ‘wigglies’. Volunteers sewed ‘wiggly’ bags which were brightly coloured cloth bags which hung round the child's neck from a cord and were used to hold the Hickman lines and keep them from moving around under the child's clothing.

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