“In the blink of an eye, everything can change. So forgive often and love with all your heart. You never know when you might not have that chance again” - anonymous
For Josh, with thanks to his mum for sharing
It’s Sunday and, like many of you, I started my usual get-ready-for-the-week routine in the afternoon. During the humdrum of checking emails and preparing a list of things to do, a text from my sister stopped me in my tracks: “Tonight at midnight its one year since we were told Joshie needs to go on life support”. I immediately picked my laptop to write about my nephew Josh and the events that took place on this day over a year ago.
It was Sunday 7 October 2018 when Josh, then six years old, was taken to the local hospital in Kent for a routine overnight stay to receive fluids for a high kidney reading, one of the main after effects of stem cell transplantation. Unbeknownst to all, a bacterial infection was growing in his central line and when fluids were being pumped in through the line, this also transported the infection throughout his entire body, causing a full blown case of sepsis and as a result, dangerously low blood pressure. He started to rigour and collapsed. Then, in the early hours he was placed on a life support machine. A few hours later my sister called to tell me what had happened and in a shaking voice said that the doctors were not sure he was going to make it.
I stumbled out of bed, pathetically trying to autopilot my way through my usual morning routine while in shock. I made it into the city and stopped at Bank side to take a call from my sister who had just arrived at St George’s Hospital’s specialist care unit in Tooting where Josh was transferred into intensive care. I stared out onto the Thames in disbelief that he might actually be taken from his family…from us. I felt feint and dizzy and couldn’t imagine what his parents were feeling. Then the flashbacks came.
It was July 2017 when Josh first became ill. The school teachers saw a rash develop over his bod and called his parents to collect him. Following some highly specialised testing to figure out what was the matter it was determined that an unknown parvovirus mysteriously caused an aplastic anaemia. This disease is caused by an imbalance in the number of red and white blood cells produced by the bone marrow – the human body’s most significant factory and a key element of the lymphatic system. Bone marrow makes more than 200 billion new blood cells every day.8 Put simply, everything that you and are and are physically becoming is down to your bone marrow. Given the viral attack on his factory, Josh was not producing enough white blood cells, rendering his immunity to infections very low.
This meant regular blood transfusions at the hospital (litres of blood were couriered in from all over the country) and a course of immune boosting drugs over the next few months to try to get the cells up to levels sustainable enough to counter the parvovirus, which attacked his immune system. With his veins already pricked to capacity with needles the only way to keep carrying the medicine and to administer the transfusion was intravenously through central lines direct into his body.
Months of blood transfusions and medicines went by and Josh’s bone marrow was still not producing the required amount of cells. With that his parents accepted the inevitable plan B: a bone marrow transplant. Finding a donor can involve a pilgrimage all over the world in order to save a life. But thank God, his sister Grace was his best with a match with a 9/10 ranking and hence his best candidate.
A date was set in March 2018 for the transplant to happen at The Royal Marsden Hospital in Surrey. Unfortunately, this had to be postponed after lines carrying the chemotherapy and other drugs into Josh’s system – necessary to suppress the immune system in order to accept his sister’s marrow – became infected and had to be removed.
The infection lasted a few weeks before a new central line could be fitted and the process could start. On the 26th of April Grace’s bone marrow cells were extracted via two large needles driven into her back (a whopping 14 million stem cells, compared with an average of 1-2 million for a child of her eight years). She awoke from the procedure hangry (hungry + angry) and demanding the cottage pie promised to her by the doctor before she was anesthetised.
On the 27th of April Grace’s harvested cells were drip fed into her brother as he lay on his hospital bed watching the Lego Movie, eating peanut butter out of the jar (when faced with the weight loss of chemotherapy, even the nurse approved of this creamy protein and fat based infusion). I remember watching in awe of his ability to not let life’s challenges ruin his enjoyment of it but instead choosing to accept them and take them in his little stride.
After a few weeks in hospital – including his sixth birthday, where the hospital staff threw a party for him – Josh was discharged. Then in July he returned to hospital with a bad stomach. A colonoscopy and subsequent operation to figure out what was going wrong resulted in another eight weeks in hospital. The doctors thought that the transplant was the worst of it, but for Josh it was after the fact. Thankfully this also passed and he returned home in late August with visits to the local hospital to keep things in check. We hoped this was the last set back on the journey that usually lasts about a year for the transplant is deemed a success.
But in October things went bad again. That night the doctors worked to keep the infection from spreading and to keep his blood pressure up. But the fluids going in had pushed the bacteria further into his chord causing sepsis. With sepsis the immune system overreacts so the body starts shutting down, hence his low blood pressure.
By about 10pm the infection had spread through his body. Unable to fight on his own and while rigouring on the bed, Josh’s miracle working local consultant, Jill, who had just home after an 18 hour shift put her coat back on and headed back out to save him. She worked with staff to pump fluids in through a cannula in each foot to try to maintain his blood pressure, taking extreme care not to drown his lungs in the process.
They worked all night but early on realised he would need to go to intensive care in London. Jill called the ICU retrieval team at St George's and they set off from London to collect him in the ICU ambulance. When the ICU team arrived at the local hospital Josh was taken to theatre to be put on life support, they needed to do this before leaving for London because, scarily, he wouldn't have made the journey. So a few minutes after calling me my sister and brother-in-law were in a blue-lighted London bound ambulance with Josh still unconscious in Monday morning traffic. An ICU doctor and nurse travelled in the back with them, working meticulously - using only eye signals to communicate their stress of his continually dropping blood pressure which they were trying to maintain by pumping fluids into him as the pressure dropped only for it to rise for a few minutes, then drop again.
As things couldn’t get any more stressful, the next challenge on the journey came when, on the motorway, a car swerved out of the way, hearing the ambulance coming, and crashed into the barriers. Emergency protocol means that the ambulance driver carrying the stressful situation of Josh and his falling BP had to stop as he was first on he scene! The doctor and nurse, now really feeling the pressure of the situation, coupled with Josh's parents pleading with them to get the driver back in the ambulance, must have put this down as their most challenging shift! Thankfully the driver of the crashed car was fine and 30 minutes later the journey commenced, now at even more of a break neck speed. My sister told me that when the ambulance team dropped Josh off with the ICU team, she said to Lizzy, the ambulance nurse: "I don't know how you do this day in and day out, but I will never forget you, thank you". It takes a special person for that role!
At St George’s, the ambulance team ran through the corridors, parents trailing behind, to the children's ICU where the team was waiting. My sister described it as something off the telly: the ambulance stretcher was wheeled into a room lined with people, Josh disappeared under a swarm of highly trained ICU medics and his parents were ushered out with the blinds to the room brutally, but at the same time, very kindly shut before them. The team managed to get him on adrenaline to make his blood pressure go up so that they could take the infected central line out. This is usually done in theatre however, given that this line was the source of the stress his body was under, there was no time for theatre and the surgeon was waiting for Josh in the ICU room. So while the rest of the 10-strong team worked to save his life, the surgeon whipped the line out there and then and placed another one in his groin to keep giving him the cocktail of drugs and sedation to keep him alive. My sister sent me a picture of his unconscious and bloated frame with medusa-like chords from the machines running in and out of this body, making him look unrecognisable. Tears overwhelmed me and I couldn’t believe that this could happen to someone so small. Those three hours of him being worked on by the ICU team and surgeon and his parents pacing the parents waiting room were the longest of their lives.
A few hours later Dr Anami, the head of ICU who greeted the family from the ambulance and advised he would be leading the team who would work to stabilise him, came to deliver the news: "Your son is very sick but in my years of experience, I feel that he is going to make it". A couple of days later they started to turn down his sedation to try to slowly bring him round and see if his lungs would start to work on their own. Josh woke up immediately on the first down turn of sedation and started pulling the ventilator out! The next day he was conscious but not speaking and unable to move. After a few days he came around and started to talk. I remember seeing him on the Saturday, when he was up and playing with his toys. It was a week to remember. The next day I ran the Royal Parks Half Marathon to raise money for the Royal Marsden hospital, where a transplant had taken place.
A few days later Josh was discharged from St George’s. They administered the drugs orally with regular check-ups at the local hospital. He grew stronger and well enough for school again. Things began to look up for him and it seemed like the turning point from what had been a tumultuous year.
Josh went from strength to strength and within a few months, while not being completely out of the woods, he was running around and doing things most boys his age would do. Highlights included opening toys on Christmas Day, performing the Macarena on New Year’s eve, bike rides in the New Forrest, singing happy birthday to his sister and the ultimate joy ride: celebrating his seventh birthday at Legoland in May. It’s true that time is the healer and his journey reminds us that life is not about waiting for the storm to pass, it’s about learning to dance in the rain.
His hospital visits are now less frequent, and this year, after a sterling performance in year one at school –where he won multiple Butterfly awards (prestigious accolades for good behaviour!) he is blazing a trail through year two, showing a particular curiosity for farm and outdoor work.
The family also recently moved into a new home after their previous landlord announced he was selling up in July and fortuitously, fate shone down on them with a blessing disguised as a house for sale in the same village where they live. Now Josh and Grace each have their own room!
I’m ending off here, fittingly, after saying good night to both of them (I’m down in Kent to babysit for two nights) with long hugs. And with everyone in bed and the house now still I pause to appreciate how far Josh and his family have come and how everything can change in an instant.
Have a good week and love with all your heart (even Monday mornings!).
 Aplastic anaemia is a rare condition in which the bone marrow fails to produce all three major types of blood cell. https://www.leukaemiacare.org.uk/support-and-information/information-about-blood-cancer/blood-cancer-information/aplastic-anaemia/?gclid=Cj0KCQjwoebsBRCHARIsAC3JP0Jf1t8k_I9kbsSZgzFvaxqxMOW65Wcmq-gLKjwJJGNbOfDJIbp-ydkaAhnvEALw_wcB