We have a large team surrounding us.
Our main hospital for treatment of this cancer is Great Ormond Street Hospital for Children.
Our local hospital for Daya’s care is North Middlesex Hospital.
We are enormously thankful to them. We have been thankful for years. However, my mother once said, ‘to truly know a person, you need to live with them’. We have now lived with them.
We have lived at North Mid for months and months. When I say ‘lived’, it is no exaggeration. We have lived there, slept on pull out beds, stayed in isolation in our room for weeks at a time, and when allowed, we have walked the cold corridors in the basement to avoid crowded areas, walked the grounds and showered quickly during nap times. We have sat with nurses during sleepless nights and painted over fluid charts and note papers.
We know them. We have know them for five years. Each child has experienced inpatient stays for a variety of reasons. However, nothing prepared us for what Daya’s post chemotherapy body would endure. All three babies have stayed in the neonatal unit due to being born early and on the short term inpatient wards.
We have run into this hospital with a shaking baby, with a fever of over 40, at 2am in the morning, and they have stepped up. And we have done this many times. Chemotherapy wipes the body and leaves her neutropenic. It destroys her immune system and it is hard for her to fight infections. She has had infections in her gut, in her Hickman Line and relentless viral infections over winter. Basically, the entire time she’s been having her 8 rounds of chemotherapy. She had a stem cell transplant after her 9th round (High dose chemotherapy) so her neutrophil count recovery was quicker.
During this time we have been looked after by lots of people at these hospitals; doctors, nurses, HCAs, dieticians, pharmacists, scanners, radiographers, cardiologists, audiologist, anaesthetists, play-workers, porters, housekeeping, cleaners etc. The list goes on. We are thankful for all the excellent work from our team. Words such as ‘thank you’ are inadequate but we are thankful.
Our cleaning lady would come in everyday. She would dance to our music. We have played music to Daya and danced around the room to keep her happy. We have done this a lot. The cleaning lady would join in and had some great moves. Our nurses have danced along too.
Our housekeeping teams always kept the laundry clean, extra pillows(!) and the food on time. They’d also check in to see if we were eating properly.
Our HCAs and nurses have been essential to our day-to-day management and care. They have a lot of love for Daya. They miss us when we aren’t there – although we all know it’s better when we aren’t there and are busy playing at home. We miss them too.
Some have left us – maternity leave, travelling, more travelling, moving to Switzerland for ‘true-love’ or moving to a different hospital.
An excellent nurse is worth her weight in gold.
In fact, an excellent Nurse is priceless. We have a code name for our nurses at North Mid – ‘ the big guns’. If ever you wanted a bunch of nurses on your team this is the place to come. In short, they get stuff done. They are communicative and responsive. They love their profession. They are funny and caring. They are invested in their patients and enjoy building relationships. Over time we have got to know them all. They are precious to us. They don’t just do a job. You can’t be a doctor or a nurse and ‘just do the job’ – firstly, it shows that you don’t give a shit and secondly you wouldn’t last long. This profession requires a degree of excellence and self ambition. What the doctors and nurses do is not accidental.
Our doctors, at all levels, some of whom have had steep learning curves, have worked hard to ensure they are coming back with the right answers, plans and progress.
They are attached to and invested in her care. It’s hard for them. They want to see her do well and survive. These are human beings with expertise, not god-like mythical creatures. They are humans with their own hopes, dreams, kids…it’s not easy for them. They are wonderful. Communication is everything.
Some of our doctors and nurses have seen us go through so much over the years, the enormity of our situation is …it is unfathomable to them. Their support has been invaluable.
I ask a lot of questions. I try to keep on top of things. They help us to get her better quickly, to return home and to enjoy as much time at home as possible.
They stay dutiful and professional. They put their own emotions aside to stay focussed on outcomes.
Our feelings are the same towards our doctors and nurses at GOSH who are wonderful. They are our frontline treatment centre. Our process there is to follow a regime as part of our treatment plan. The process is structured around phases and next steps. Unforeseen issues are dealt with quickly, for example when we were inpatients, and she spiked fevers for an entire week, we were rushed to X-rays,ct-scans, echos etc. Our medical staff there are fantastic. They are supportive and proactive. They are intricately woven into the fabric of each phase. The harsh reality is that in their specialism, they see many children die and they relentlessly strive everyday to save the lives of the children that come in. It can sometimes be a heart breaking place to do a shift. And at the end of the shift, they walk back out into the real world, a world that doesn’t know the loses and difficulties they see. They are heroes for us.
They have also been teaching Daya all sorts of phrases: Hiya, where’s she gone?, cup of tea, arm up, arm down, bath, Daya fix it, temperature, high five, get out, let’s go, home, you’re welcome, sit up, lay down, wipe….and she can say their names which gets them very excited.
Here are some images from our final days of high dose chemo and the day we were leaving to come home. We didn’t get to take pictures of all the nurses. We missed a few. We love them. Good people turn a bad situation into something that is easier to manage. This is love.
They are so full of fun and enthusiasm.
We couldn’t do this without them. We are thankful for their unwavering support.