Day in the Life – Hospitals

Hugo started the maintenance phase of his treatment plan in January 2016. It’s the final phase of treatment and is made up of 12 cycles, each of which are 12 weeks long. However, each 4 week block is the same so we tend to count in months rather than cycles.

Celebrating the start of the maintenance phase

At the start of every 12 weeks we go to GOSH. 4 weeks and 8 weeks later we go to our local hospital instead. These are actually our only scheduled hospital appointments, but of course we’ve ended up with far more than that.

Each appointment starts with obs – temperature, blood pressure, heart rate, height and weight. At the beginning of treatment Hugo would cry everytime his blood pressure was taken. Now, after nearly 3 years he doesn’t cry, but he still likes to hold my hand, which is just fine with me. He knows exactly where everything goes, he helps the nurses and generally just lets them get on with it. Another part of treatment that has become second nature to him.

The main reason for these appointments is to administer a chemotherapy called Vincristine which has to be done intravenously. They also check Hugo over and it’s our opportunity to ask questions and go over any concerns we or his team have – I usually have a list! Sometimes he needs to be reviewed by the physio, or it’s decided he needs an extra test or scan. We also pick up a big bag of medication for the next cycle of treatment.

In addition to these 4 weekly appointments, we have had lots of extra ones for additional tests. There have been bone density scans, a nerve conduction test, x-rays, a heart scan, moulds for in-soles and an MRI scan. We have also had sessions with the physio, the psychology team and at the hydrotherapy pool.

There have been plenty of unscheduled trips and stays too. Anytime Hugo gets a temperature we have to dash off to hospital so he can be assessed for further signs of infection and have bloods taken. We then cross our fingers that we escape with oral antibiotics, rather than IV ones which need a 48 hour stay. We’ve needed wiggly unblocker and strange blood results investigated. There have been rashes, limps and gunky eyes that have needed to be looked at and there’s been a broken leg. Any sign of illness has to be checked out because he is immunocompromised so the simplest of things can develop and become serious very quickly. We have also had week long stays for pneumonia and liver failure. 

There are probably many others too that have faded in my memory or blurred with others. We always have a bag packed ready to go, just in case. Every cough, cold, rash, or strange symptom has me on alert expecting a possible trip to hospital.

Hugo has spent a great deal of his childhood at hospital. Visits are an inconvenient necessity, they are time consuming and there is always a lot of waiting around, despite the best efforts of the staff. We have to make arrangements for Henry and make sure he doesn’t feel left out – because when you are 9 it seems unfair that your brother gets a day off school, even if it is for chemotherapy!

Luckily Hugo treats each trip to hospital as a fun day out, especially now he gets to miss school, and it’s a credit to our hospitals and wonderful NHS that he feels this way. There are play rooms and wonderful play specialists making these visits easier and the time go by a little quicker. The nurses are kind and patient and have gotten to know our little man and how he likes things done. 

Although sometimes understandably wary, he is generally comfortable around doctors and nurses and within a hospital environment. He plays at being a doctor with his cuddly toys and has developed a very caring and considerate bedside manner.

I sometimes wonder if his shy and sensitive nature has developed because of all the prodding and poking by strangers, because of all the times people had to hurt him, even with the best of intentions. He’s spent a great deal of time in a world that most people visit only briefly. At the end of treatment our visits will be fewer, but they will continue for quite some time. I hope there are positives to be taken from this world. That he has learnt sensitivity and empathy, rather than fear and distrust and that it will continue to be a fun day out for him in the years to come.