Every November is an anniversary for us where we began “the days of sickness”. And each year we get to it I am grateful that we are still here fighting this battle. Regardless it makes you reflect on the journey we have been on.
Most people will tell you that they remember the moment the doctor told you, and we do . I recall it as if I watch it on a DVD , third person looking both at myself and my husband whilst knowing what was going through my mind
Charlotte had her 4th birthday and on the day after she was sick, mild vomiting and headache and fever. We took her to the dr and they did her first bloods and told us that we should head to whg hospital for a diagnosis. He implied that some marker was a concern but we weren’t sure at that time , if it was simply a reaction to too many sweets or just a mild illness.
I can’t fully recall the order of things but over the next 6 weeks, we completed an ecg, 2x daily bloods, lumber puncture, ultrasound, mri of the stomach, x-rays and so on and so forth.
The more time we spent in the hospital the more anxious she became, with blood tests being extremely traumatic. Having to pin her down , with her crying and me crying , feeling like we had to do it and yet no no real diagnosis coming from it.
We spent several weeks in and out of hospital me and her , as hubbie had to remain with the other 3 kids to keep some sense of normality. He would bring them in and we would speak in hushed tones about what was going on. I challenged doctors on their lack of knowledge checking it wasn’t cancer and it wasn’t in her brain. They told me it couldn’t be , she was presenting too well and oncologists in starship had reviewed the bloods and it wasn’t that. Instead they put alternative titles on it , that didn’t nearly match her symptoms suggesting that further symptoms would appear.
In December 2016 we spent a further few days in hospital administering iv antibiotics testing another random theory that she just needed a decent dose to stop the twice daily fevers. She spent the night vomiting heavily , with me and her managing it in our room and finally me saying no more. That was a tough night seeing the trauma she was suffering , with little confirmation that this was working and what looked like her body rejecting what was supposed to help her.
At this point , even though the fevers tired her out , we felt that we could live with that, we weren't getting any specific diagnosis and thought it was better then living in and out of hospital. It wasn’t something dreadful. So, we left. Waiting for further symptoms , waiting for the drs to miraculously find rhyme or reason for my daughters’ sudden onset off illness and to move on.
We went home for xmas, and then on to my mums for a holiday . On the day we were leaving to come home, Charlie went to the toilet and suddenly let out this scream of pain, but she couldn’t explain where it was coming from. It lasted minutes. We gave her ibuprofen – pamol didn’t stop her pain or fevers and she was fine.
We had a 6-hr drive home and we had now lost faith in our local hospital. We ummed and arrgh knowing of the long waits in A and E and managing the family of 6 in a waiting room. But her scream necessitated a stop somewhere just because of the tone of it.
Late in the evening and at the end of December, we pulled into starship emergency dept. and then we waited. We saw various registers and by about 9pm we were starting to settle in for the night. My 3 elder children were fighting over the 1 bed and the cot to crash in. Dad was on the lazy boy, I was on the floor assuming it would be another sleepless night. Charlie fidgeted in between each bed with the lights glaring outside the door. Finally hours later, one dr made the call to precautionally do an mri of her brain and this was scheduled for the next day.
After the mri , us and 3 kids were meandering about the hospital when we got calls on both mobiles. Drs never chased us that much before so this was the first sign that something might be amiss. The next sign was the number of drs – maybe 5 or 6 inviting us into a room. The third sign was a dr offering to look after the elder 3 kids outside.
We came into the room with this wall of drs acting as a panel on the other sign. The poor guy who had only just met us that morning led the conversation.I wonder if the other drs didn't have the guts to say it, to admit their failures and guilt. I don’t remember the words he said but I remember looking at my husband incredulously, looking at him thinking wtf. This isn’t real. Next the surgeon introduced himself and said that we would be in surgery tomo if not earlier. That he wished to get a good night’s sleep for this potential 8 hr surgery but if symptoms were bad, we would be doing an emergency surgery that night. He told us how close she was to death. He told us how big this one tumour was. We signed random paperwork approving the next step. And then we walked out.
I had two female drs afterwards rubbing my back telling me it was alright to cry as if they knew me or had any understanding of what I was thinking. I never did the movie cry , the breakdown in the halls. I felt at the time that they were judging me because of my lack of reaction but I also felt so angry that now they cared, cared when maybe it was too late , when maybe they should have paid more attention in the weeks prior. I didn't need a hug from a stranger nor did I need their pity. I needed them to do their job and have answers. I think in reality at this point the shock was there and this result had not sunk in. It felt like someone else's life, some movie I was watching, not my new reality.
..........
Even though that moment is scarred in my memory , it was only one-part of this journey. The 6 weeks prior with the various procedures and the emotion and trauma that was induced because of Charlies reactions required me to be the strongest I’ve ever been. Staying away from your family, managing her in the concrete environment and having to keep it together was tough tough tough. Then there was the surgery after the diagnosis, managing 3 rowdy country kids in the city where our priority focus had just endured life saving surgery and is bandaged and bruised with cords and machines all over her. Doingthis on bugger all sleep and your own stress levels and just getting through each day and wondering how she is. Next is the cancer diagnosis and what that looks like, the manic researching, the fear of what will occur and the quick onset of intervention talks. Then there is the misdiagnosis , again the confusion about what this tumour is and was and again not being able to trust those in authority whose job is and was to keep my kid alive.
From the day she got sick , there have been new hurdles, new challenges and learning all the way.
We are now in a place that has suffered surgery, relapse, radiation, intervention after intervention and ironically it is all normal now. We have a handle on what to expect and what this does but are thankful that we have not experienced all of what cancer has to offer nor would we want to.
But as we get to these anniversaries , that no one wishes to celebrate, it is a terrifying look back at what we’ve accomplished and endured in what some would say is the toughest of times.
But when I look back at the dedicated photo album, I see smiles, and joy to be found despite the occasion and despite the environs. I am grateful that we have had this time together. We have still had laughter and joy . we still live on and my charlie is here to celebrate her up and coming 6th birthday, two years on.
