If you don’t already know, my son has Leukaemia. This is his third cancer diagnosis since he was six years old …
It has been so long since I wrote anything on my blog that I have almost forgotten how! Today I decided the time was right to blog again, although, I don’t know how many times I have started this post and then just hit the backspace key. It doesn’t help that WordPress doesn’t want to play today 😕
The highs and lows of the Childhood Cancer rollercoaster are so unpredictable. Despite having previous experience of this, I thought that I would be able to write something every day, but as soon as we hit the first crisis, things went downhill so fast and priorities changed.
The current situation is that we are just playing a waiting game, and this gives me a little bit of headspace for writing.
Let’s rewind then and I will tell you some of the things that have happened and how things became critical.
THE STORY SO FAR
My son was taken ill on holiday and ended up in a foreign hospital. The doctors were quick to suggest that he had Leukaemia and gave him several blood transfusions. They wanted to do more but understandably all my son wanted to do was come home.
He did get back to the UK, and then tried to contact his oncology team. When he was unable to get an urgent appointment with them, he took himself to the A&E department at his local hospital. They admitted him straight away and began their own tests, sadly concluding that he did have Leukaemia. He had to remain in hospital while they did further analysis to decide which of the many types it was, and because he had an infection (a side effect of Leukaemia) and he needed more blood transfusions. The doctors told us that the Leukaemia had without a doubt been caused by the chemotherapy he had to treat his Osteosarcoma.
Eventually the haematologist was able to diagnose Acute Myeloid Leukaemia. It is treatable thank goodness, and the plan involves chemotherapy and then a bone marrow transplant. Chemotherapy was going to start almost immediately, but first a specialist arrived to insert a PICC line into his arm. The PICC line is needed so that they can give chemotherapy directly into the vein. It also makes it easier to give other medication and take bloods etc. The risk of having a PICC line is that it can become infected and this was indeed the case later. However, when my son had a PICC line previously for his Osteosarcoma, it gave him no trouble at all.
It seemed that my son tolerated the first chemotherapy cycle very well, especially considering it was the strongest chemo he’s had to date (and that’s saying something). The chemo was given over five days. It was envisaged that my son’s blood counts would fall, and then slowly recover with the help of more transfusions. We expected that he would remain in hospital for around 6 weeks.
One side effect of chemotherapy, and also of Leukaemia, is neutropenia. Again, it is something we were used to from previous cancer treatment …or so we thought. Neutropenia is a low neutrophil count. Neutrophils are a type of white blood cell. All white blood cells help fight infection. Neutrophils are there to help destroy bacterial and fungal infections. In my son’s case, his neutrophil count dropped and dropped to zero. He had no way of fighting infection and was kept in isolation. It was inevitable that he would get some sort of infection, despite everyone’s best efforts.
Sure enough, he began to spike very high temperatures accompanied by rigors (that’s the shakes and shivers), and the doctors had to act quickly to find the source of infection. The most obvious source was his PICC line. He had emergency surgery to remove the line and to have it replaced with a temporary line in his neck instead. The temperature spikes continued, and he was taken for scans and x-rays to try to pinpoint other sources.
Eventually, the infection was so bad he was transferred to the Intensive Care Unit. It was a very scary time. The doctors told us at one point they did not have the infection under control, that it had spread to his blood and it was affecting his heart. They said the damage to his heart could be permanent. They also decided that the temporary line in his neck had become infected too and needed to be removed.
My son had been on antibiotics all the time and after a while they started winning – thank goodness! Gradually my son recovered and then he was allowed back to the ward. His blood counts were still very low. The good news was that the doctors could see the general trend was looking positive, and to his great relief he has been given a few weeks at home.
Since leaving the hospital he has had many outpatients’ appointments, including for bone marrow testing, but the test was inconclusive. That means he needs another bone marrow test before we will find out if the chemo has worked or know what the next stage of treatment will be.
It is quite possible that my son will be in hospital for Christmas, because cancer doesn’t care what time of year it is. It won’t be the first time Christmas has been affected by illness, and I get the feeling it won’t be the last …
Any questions? Leave me a comment below and I will try my best to answer. Or you can just leave me a message of support, thank you! Hopefully I’m back in the swing of blogging now – just in time for Blogmas!