Day in the Life – Medication

I often get asked if Hugo is still on chemotherapy. Has he finished, or is he due another cycle? Treatment for blood cancers can differ from other cancer treatment plans. It is often long, in some cases life long, and I think this can be difficult to comprehend – I know it was for us when we were told his treatment would last for over 3 years. Hopefully this explains a little more about the medication, chemo and otherwise, that Hugo takes for his type of leukaemia (acute lymphoblastic leukaemia).

During the first 6 months of Hugo’s treatment each phase was different. The drugs, the way they were administered, the length of the phase and the side effects all varied. We didn’t know what to expect when we started each phase. What effect the drugs might have or what challenges Hugo might face. It was intense, scary and incredibly difficult.

Life in the final maintenance phase is a little different. Every cycle is the same, or at least they should be. The medication is less intensive. It’s not easy, but it is easier. It’s more predictable and we can plan a little more. We have slowly got used to the regular side effects and Hugo’s medication is now a very familiar part of our family life.

As you would expect, Hugo is on a wide range of medication. What is possibly unexpected is that it’s not all chemotherapy. There are a number of other medicines. Some deal with the side effects of the chemotherapy, others are supportive, while some are proven to improve the chances of riding his body of cancer. Some are introduced as and when needed, while others are constant. Every child who is being treated for leukaemia will have a slightly different list of medication, depending on the side effects they experience, whether they are on a trial, their age etc.

All of the medication Hugo takes at home is given orally through a syringe. An average day of drug taking for Hugo, during the maintenance phase, looks a little like this

AM

Septrin – this is taken just on Mondays and Tuesdays. It’s an antibiotic which helps to prevent and treat pneumonia, which Hugo is more at risk of contracting because of his weakened immune system. It smells and tastes of banana, which sounds nice, but Hugo doesn’t particularly like this one.

Gabapentin – this one helps with neuropathic pain –  the nerve pain and muscle weakness that is caused by the other medication he takes. Apparently this one doesn’t really taste of anything so Hugo doesn’t mind this one. 

Sytron – this is an iron supplement. Every few months Hugo’s iron levels drop and he has to take a supplement. It’s bright red and doesn’t taste very nice. Hugo tends to take this one first to get it out of the way.

Dexamethasone – once every 4 weeks Hugo takes a 5 day course of steroids. So if it’s steroid week, this one is added to the list. It smells and tastes of mint and is probably his favourite one taste wise – not so much side effect wise!

Weetabix with a side of medicine

LUNCH TIME

Gabapentin and Sytron again.

PM

Septrin, Gabapentin, Sytron and Dexamethosone (if it’s steroid week) again.

Methotrexate – this is a chemotherapy drug taken once a week, in our case on a Friday evening. It’s bright yellow and apparently tastes horrible. It is the one that Hugo struggles the most with and it can take him a little while to build up to taking it. He usually gets a little treat to ‘help take the taste away’.

The dreaded methotrexate

Mercaptopurine – this is the only chemotherapy drug that Hugo takes daily. It has to be taken on an empty stomach, so no food an hour before or an hour after, including milk. We give this one to Hugo about an hour after he has gone to bed because of the food limitations – Hugo is too much of a milk monster to manage 2 hours without it during the day. He now takes it while half asleep and doesn’t really know he has it. It is pink and raspberry flavoured. I suspect it doesn’t taste very nice. This is also the drug that caused his liver problem, which is a pain, given that it’s his main chemotherapy drug. When Hugo comes to the end of treatment, this will be the last chemotherapy drug he, hopefully, ever takes.

Methotrexate and Mercaptopurine come under the family of cytotoxic drugs which means we need to wear protective gloves to administer them because of their level of toxicity.

Once every 4 weeks, alongside the steroids, Hugo has Vincristine – an IV chemotherapy given at the hospital. This is the only drug Hugo has regularly that is not taken orally. It goes in through his wiggly and takes all of about 5 minutes.

Vincristine going in via wiggly

At any given time, Hugo may also be on additional medication. He’s had numerous courses of antibiotics, both intravenously and orally, for suspected infections. He’s also had courses of vitamin D, medication to help repair his liver, eye drops, creams for various sore bits, and various other drugs to help with the complications of his condition or the side effects of the chemotherapy.

All this means that on a Monday, during steroid week, he will take around 11 doses of medication during the day. On another day, on a non-steroid week, it’s ‘only’ 7 doses. We get through a lot of medication, syringes and blue gloves.

Our medical shelf in the garage!

Luckily Hugo has always taken his medication fairly happily. I find it a little sad that he doesn’t question it, that it is just an acceptable part of his life, but I am also thankful that it is not a harder process, as I know it is for many others.

So, he’s not hooked up to IV lines for hours. The medication doses are no longer at a high enough level that they cause his hair to fall out, or for him to be sick, or any of the other side effects that are so synonymous with cancer treatment. However we are, on a daily basis, giving him medications that are toxic with nasty side effects. 

But they are also saving his life, teaching his bone marrow how to produce white blood cells properly and reducing the risk of the leukaemia coming back. There’s not a question over whether to take them or not. It’s frustrating that the very drugs that are saving his life are also doing him harm, but his life is our priority. Getting him through the leukaemia is our focus.

One day there won’t be a box of medication in one of our kitchen cupboards and a stash of medical supplies in the garage. His breakfast won’t be accompanied by a pile of syringes full of medicine and the side effects that come with them. We won’t have to remember to pack bottles of medicines when we go out for the day or on holiday. But for now this is how it is.