To treat Oscar’s urine infection we were given a course of antibiotics to take 8 hourly for 7 days. Unfortunately, the hospital pharmacy did not put enough antibiotic into the bottle and we ran out this morning on day 5. I rang Dr Margaret to get some more and she said to come to clinic and get it over and done with while we are in there. So that is what we did and this is the story of the comedy of events that followed.
I was well prepared for a considerable wait as Dr Margaret had mentioned it was a GA (general anaesthetic day – meaning lots of kids having bone marrow aspirations and other procedures) so we didn’t hurry. When we got to the hospital car park it was full and we waited and then circled around and around for some time before finding a park on the very top level in the pouring rain. I got the pram out of the Ute and the boys into the pram and then raced down the many ramps and into the hospital. When we arrived in clinic they didn’t have someone to take bloods so we headed down to the general pathology for the hospital and there were only 3 people ahead of us, which was great. When Oscar got called in Auden insisted on coming and was fantastic, sitting still and waiting for Oscar’s blood test to be completed. Oscar likes to pull the little table out that we lean his arm on and then he likes to set up the cotton wool ball, band aids and white swabs himself for the nurse. There was another kid in the room who was autistic and hysterical about having his blood taken which I thought might disturb him but Oscar submitted, with certain controls, happily and we were done. On our way out four staff members were holding down the little boy with autism trying to get his blood test completed while he screamed and fought like mad. Auden was worried about him but Oscar said, “It’s ok, they helping him.” Auden seemed to accept this as the natural law (because Oscar said it) and was happy to go back to Oncology and play while we waited.
Two hours later Dr Margaret tells me Oscar has to have his blood test again as his blood clotted. So we have to head back to Pathology. I leave Auden with a little girl (I will call her X) he always plays with and her mum and the volunteers in the play room at clinic and head to Pathology again. It’s after midday and Oscar is troppo tired and keeps asking for bottle bed but we are lucky and we get one of his favourite nurses for the second blood test and this is enough for him to rally through it.
We head back to wait for the results and to collect a sample of his urine for testing. While waiting with X and her mum we get talking as we do each visit. X has a rarer form of cancer and has had a long 14 month intensive treatment with huge amounts of time spent in hospital. Today is to be her last intensive dose of chemotherapy but X’s mum has been told that her Oncologist is on holidays and hasn’t left any instruction – so the chemo had not been ordered and there is some disagreement about whether she has finished treatment or needs this last dose. X’s mum has spent last night plying her with the necessary medications in preparation for her treatment today and has been told in the past that every chemo treatment is essential. She doesn’t want to leave without the treatment. She has been waiting since 8am for the staff to locate her Oncologist on holiday by phone and verify that the treatment can go ahead and also waiting for the chemo to be made up.
To top all this off, X’s mum is feeling a bit fragile after having found out last week that her daughter has been on an incorrect medication for 9 months. This medication has severe side effects and her daughter has reacted terribly and, despite asking questions at every stage, each of her four specialists including the immunologist failed to realise she didn’t need to be on this medication. If that isn’t bad enough all the staff had a meeting about this issue several weeks ago and not one of the people present at that meeting thought to ring X’s mum and say, “Stop giving her the medication.”. So, let’s just say she is not feeling a strong sense of safety about the care that she is being provided.
I tell X’s mum she is doing so well not to be screaming and yelling at this point in time, having been given a different story by all medical staff involved in today’s confusion and still waiting and giving her daughter preparation medicine for the treatment. She says that she doesn’t like to complain and that she has lost it several times before in this process and feels very close to losing all control. We discuss how awful it is that you have to be pushed and pushed and pushed by the system into a state of unnatural and unnecessary rage against a machine that never listens until you are in their face screaming. X’s mum says the only times she feels she has truly had a sense of getting the correct treatment has been when she has been raising her voice in an extreme fashion that is so far beyond her normal self that it makes her feel like she has been possessed.
This is amazing to hear as from my experience of seeing her every fortnight for the last year she is always so deeply quiet and almost dispossessed – when she talks about her daughter’s prognosis and current status she talks as if it is happening to someone else. I understand this completely and recognise it as the coping mechanism that it is because if you don’t detach from this journey you can’t always do what needs to be done as a mother. I like to call it the iron mask of extreme motherhood and it is an essential mask allowing you to attempt your best at modelling some form of calm and resilience for your sick child.
I don’t tell you all of this to share the grief or burden you but because I think these stories are never told, precisely because the iron mask of motherhood requires us mums to keep it all together for our children at the very least. We try to show everyone we are coping; we are calm, good, attentive role models for our children no matter how much we are pushed beyond our comfort zones or how much we witness our children being forced to submit to all kinds of unspeakable situations.
The combination of trying to find your voice so that you can stand up for your child sufficiently when the system that is inefficient impacts upon their level of care and feeling the intense responsibility of that care being in your hands and the desperate need to shut your voice up in order to stay calm and appear as the model of motherhood is a form of insanity. I feel strongly that more needs to be done to support the parents in hospital. There needs to be an advocate who takes over the role of following up with medical staff about serious questions relating to their care as they arise. As a parent who had to truly push herself to the end of all rational reality to be heard in hospital I can say that just the exhaustion of asking as many people as possible until you find the right resource is hard enough. Surely, there could be an expert who we could delegate this too, especially when we have had no sleep and are in no fit state to do anything other than barely breathe in and out. No wonder there are children who have been abandoned living in hospital. There just isn’t sufficient support for parents and if there is someone out there reading this who knows how to go about changing this I’d love to hear from them.
In the meantime, Oscar’s bloods are improving. We will wait to see if his urine test is clear and continually check it from now on. I have an appointment in January with a paediatrician kidney specialist to follow up on his reflux which we are presuming has not yet healed and to check how his damaged kidneys have held up over these long months of chemo. Next appointment is Thursday 8th December in clinic.
We didn’t get out of there today until 3pm and I had forgotten to eat and Oscar had poo all through his pants, running down his legs and in between his toes and we had to push the pram in the pouring rain back up the many ramps to the top of the car park, which was flooded. We finished up with my shoes immersed in water ferrying the boys from their pram to the Ute and Auden saying over and over, “But I can smell poo Mummy”.
All I could think is how lucky I am that I have found a reliable team of Dr’s for Oscar’s treatment and that these little inconveniences are insignificant when compared with the massive issues so many parents are facing as they hull up for another night in there.
My thoughts are with them and with all of you and your families. x