A Badly Decorated Christmas Tree
We are currently 17 days into phase 4, delayed intensification. During that time Hugo has had 5 scheduled hospital trips and 9 different drugs administered in a variety of ways.
Yesterday saw his third and final doses of strawberry juice chemo and vincristine and also the start of another week of steroids.
Unsurprisingly the intensity of this phase is taking its toll on little Hugo. He has suffered with tummy ache and painful legs. His sleep has been disrupted. There has been constipation, stomach upsets and sickness. He is off his food for days at a time and then eating huge amounts in a steroid induced frenzy. My newly confident little man is clingy, sensitive and most of the time he just doesn’t know what he wants. In the last couple of days he has become pale and is tiring easily. His blood counts have dropped and he is neutropenic.
Neutropenic – it sounds like a type of music, or someone suffering from an unusual obsession. Or maybe that’s just my over active imagination working again. It’s actually a medical term for someone who has a low neutrophil count. They are described as having neutropenia or being neutropenic.
A neutrophil is a type of white blood cell. These cells are the first to travel to the site of an infection, they are our first line of defence. If someone has a low neutrophil count, there is very little, or even no, first line of defence. Nothing to prevent an infection and nothing to fight against it. A normal neutrophil count is 1.5 – 6.0. A count of 0.5 or lower equals neutropenia. When Hugo was admitted to hospital at diagnosis his neutrophil count was 0.04. I didn’t know that at the time and even if I had I wouldn’t have understood what it meant. I understand now and I feel sick to think how incredibly vulnerable he was. There was nothing there to protect him, his army, his first line of defence, was completely and utterly non-existent and we had no idea.
If someone is neutropenic and they get a temperature of 38c or above, this is referred to as febrile neutropenia. Our blue folder is very clear that we have to be on high alert for febrile neutropenia as it requires hospital admission for antibiotics immediately.
Over the course of his treatment Hugo’s neutrophil count has slowly crept up. It has, for the most part, managed to avoid neutropenic levels and sometimes even makes it into the normal range. But, like everything else in this phase, it seems his neutrophils are taking a hit and he is currently neutropenic.
Despite all of this, Hugo manages to smile. He is somehow managing to find the energy to play with his beloved big brother and still insists on having a little walk anytime we go out, although he isn’t lasting long before he asks to get back into the buggy.
Today he helped to decorate the Christmas tree with Henry. It looks awful and it is taking all my self restraint to not re-decorate it, but they had a great time. There was laughing, santa hats and Christmas music. It was precious normal family time that I am so grateful we are still able to have – badly decorated tree included.
