I know everyone feels like January lasts for 90 days but honestly this year my January was awful. I entered 2019 witha heavy heart. I wanted time to stand still in December. My son Austin was having a 2 week break from chemotherapy and he was like a different person, well, more like he was back to his old self. He managed 2 weeks without vomiting, this was incredible not only for him but for me. I can not bare the look in his eyes when he is being sick. Fear floods his eyes as he gasps for breath between vomits. It’s truly horrendous. We had created a little magical Christmas no chemo bubble and I was happy there. Yes I want to get to the end of the journey and be free from drugs but sometimes I feel, ‘it’s better the devil you know than the devil you dont’. You see, Austin was due to start his 4th phase of chemo on 2nd January a more intense phase and I was frightened. The last intense phase nearly took his life. He lost his bowel and the ability to walk. What more could go wrong?
January arrived despite me praying for December to stay. The 2nd came round and we headed off to clinic to begin this new 7 weeks intense phase. We spent 8 hours in clinic, had his bloods taken and checked then he received 2 intravenous drugs. Just like that we started. We had to return in 2 days to receive an intramuscular drug. Friday arrived and Austin was nervous. He wanted to go to the zoo so that’s exactly what we did. We all wrapped up warm and faced Belfast zoo in the freezing cold. Laughs, giggles and animal watching helped pass the time until we needed to head to the clinic for his injection. I sometimes watch the kids getting their chemo and to be honest it’s like walking up and ordering a McDonald’s. Walk in, take a number, get your thumb pricked, get called, trousers down, injection in, see you Monday, bye. I don’t know what I expected in the beginning but it becomes all very routine.
My birthday was the 5th and I was 41. I cried all day.
Monday came and today’s chemo was intrathecal, it is chemo which is put into the spinal fluid. Austin hates these days as he really panics when he is being put to sleep. Every time I lift him onto the table I look into his eyes and it takes all my strength not to cry. He grabs me and begs me to not let them put him asleep. He tells me he’s so scared of not waking up. No child should have to feel like this. I hate cancer.
Tuesday Austin starts to show side effects. Vomiting, no appetite, feeling tired. As the day goes on he starts to get more uncomfortable. We took him for a walk in Mount Stewart our local national trust property. This seems to perk him up a bit and we enjoy feeding the birds. By the time we get to the car he starts to get bad tummy pains. I check his stoma bag and it’s empty. This is not a good sign. For people with an ileostomy like Austin, having an inactive stoma for more than 4 hours you need to seek medical advice. After phoning our triage nurse we are advised to see how he goes over night as he is due in clinic the next morning. No movement overnight so off to clinic we go. They hook him up to fluids as he as had nothing by mouth for around 26 hours. 7 hours later He began vomiting and vomiting. After assessing him they wanted to keep him in. Over the next few days things went down hill and Austin was in unbelievable pain. Surgeons and drs concluded that he had developed pancreatitis due to the chemo drugs he had received during the week. He needed to have a nasal jejunum tube inserted which bypasses the stomach straight into the small bowel.
My worst nightmare was unfolding again in front of my eyes. Austin’s sensitivity to chemo seems to take everyone by surprise. In my mind I’m reliving the 1st phase, Painful stomach which escalated quickly to sepsis and 3 months in a induced coma on a ventilator. My anxiety was through the roof as was Austin’s. This can’t be happening again. How come he gets every side effect? Why can’t he catch a break? Why him? Why my sweet sweet boy? He does not deserve this. His pain was so bad he was on a combination of paracetamol, ibuprofen and morphine. His screaming will haunt me for years. Thankfully this time no sepsis.
Days turned to weeks and just like that January was over and we were still in the hospital. One of these days I’ll do a blog for parents about surviving long stays on a children wards. Man it is tough. Anyway, on 3rd February we for home. He is still in pain but we can manage it with oral painkillers and it’s not as intense and he had his tube removed much to his delight.
We had a talk with his consultant and the decision was made to stop anymore intense chemo. Austin’s body just can’t cope with these drugs. I was both happy and nervous. Happy that he won’t continue to have severe side effects. Happy that his hair will stop falling out, again. Nervous that the cancer will return. Nervous that if it does come back I know he won’t be able to have the treatment to get rid of it. All I can do is trust God and his plans for Austin.
Austin started maintenance chemo this week. This phase will last 2.5 years. Although it’s not intense as such it’s still chemo and it’s sucks. His daily drug makes him vomit. His weekly drug makes his blood counts drop and his monthly iv drugs make him feel awful. But, like I said ‘it’s better the devil you know than the devil you don’t’. We know what to expect as he had 3 months of this after his picu stay.
So onward and up ward. I can’t start my new year resolutions on March. That’s ok right? Oh and I’m running a marathon in May! I suppose I should start training.
‘Till next time. God Bless.