I realise this post is more for me than anyone else so if I lose you along the way I understand!
I know it’s been quite some time since anyone has made a post on our blog. We have talked about it for some time. Felt we should for some time. We’ve wanted to keep everyone informed and we’ve wanted to tell everyone how much their love and support has meant to us over the past three years. It just has never been the right time for me to say where we are at.
A couple of months ago we celebrated two years cancer free! This was a fun and great milestone. We made it a family celebration so Ethan himself wasn’t the highlight. His journey has affected Blaise and Vienna’s journey and so we wanted it to be a fun special day for all of us. My mother in law made cinnamon buns and we celebrated with our Adelaide family.
One never knows what to expect but the last two years haven’t really been what we would have expected. Ethan has been very anti us blogging since he got better. He doesn’t really want everyone knowing the ins and outs of what he has been going through. So I’m not going to go into great detail here. I can tell you his health continues to improve. We have regular ct scans, ultrasounds, x-rays, blood tests, urine tests, heart ecco and ECGs. All of his results have been great. The half a kidney he has is regenerating and is almost the size of a full kidney! The human body is amazing. Ethan still suffers some side effects from all of the medication that he was on. This has affected his self esteem and how he views the world. We experience a roller coaster of emotions and moods constantly but are working through things as best we can.
The whole time Ethan went through treatment we tried to be positive and upbeat. We didn’t really talk about the ‘what if’s ‘ as we were so determined to get the outcome that we wanted. Then we moved interstate which was a big thing. I feel like I lived on adrenaline for over a year and then that kind of came crashing down last year. Not many people openly talk about depression and what is really going on behind the facade. I don’t want to dwell on it but I do want to be honest for others going through similar trials and our fellow childhood cancer friends. I don’t want sympathy and I’m not asking for any help. In fact I’d be happier for no comments on it! I just want to say that last year was really hard for me. Harder than the year we went through treatment. Because ‘IT’ is over everyone thinks you are fine and you have moved on. However when ‘IT’ was over was the first time I was able to stop and breathe. Then I would think about what we had been through and the emotions would come. It was hard to get out of bed most days. It was hard to do anything most days. The fatigue was extreme. Doing normal housework would leave me feeling like I had run a marathon. The stress of the year before had changed all my hormones, eating habits, adrenaline etc. That has an impact on the body. It was hard dealing with this in a new city where I had to make new friends. However the new friends I have made here in Adelaide are amazing.
So no one really heard from me last year at all. Sorry. This year I’m feeling lots better. It’s just taking time to piece everything back together and get on top of the house and a home business etc. A couple of months ago I started counselling at the Childhood Cancer Association. They are amazing. For the first time I have been talking about what we went through. Trying to get past guilt having him diagnosed so late in the piece. So many emotions. So many thoughts. I’m feeling so much better now. I’m not as tired and I’ve been out hiking and walking with friends which has become my lifeline.
I’ve learned so much yet part of me wonders if I learned enough from the experience. I think there is no right or wrong way to grieve. There is no right or wrong way to feel. When you experience a trauma you do what you have to do to survive. Everyone will react differently and that is ok. I think the best thing we can do for loved ones in need is to support them with love and understanding in the way that they choose to cope and deal with their trial.
I chose to write tonight as it has become a reflective time of year for me. Tomorrow is my birthday. Don’t worry, I’m not reflecting on getting old. As well as my birthday tomorrow is the 3 year anniversary from when Ethan got his full diagnosis of Stage 5 Bilateral Nephroblastoma. On the 16th of August our GP sent Ethan for an ultra sound which found one large tumour in his left kidney. It was on my birthday (we had to wait to get through the weekend at the hospital) that Ethan had a full CT scan, revealing tumours in both kidneys and in his lungs. It was a really trying day but looking back the events that unfolded that day shaped how we dealt with life for the year to come. Ethan was meant to have his scan first thing in the morning. He had to be anesthetised just in case they decided to go straight into a procedure, take a biopsy etc. Ethan had been fasting since he finished his dinner at 5:30 pm the night before. Every hour a nurse would come and tell us that the scan had been delayed again. Ethan ended up fasting over 24 hours as a sick 5 year old. Keeping him going through the day was hard. At one point I remember him crying and saying “you say you love me but if you love me you would give me food.”
Eventually Ethan went in for the scan. His full diagnosis was a huge blow. Of course it’s not what you can ever expect. After our meeting with our oncologist and surgeon I remember going back to Ethan’s room and he was still asleep from the anesthetic. I cried. I really cried. Only for about 5 minutes. I then wiped my tears and got ready for when Ethan woke up. I wanted to fall apart but felt like I needed to hold myself together for Ethan. Then I thought ‘who cares if it’s stage 5 we are still going to kick this thing.’
As the scan was meant to be in the morning my family had arranged a birthday celebration for me at the hospital. All of my siblings with their families, one of my cousins and their family and an aunty all came with food to share. Everyone was waiting downstairs for us and Ethan was still out of it. Eventually Ethan woke up and had something to eat and then I went downstairs to see my family. Everyone was so kind and it really meant a lot to have my family all there. We were just about to light the candles when Ethan came down the ramp. He saw us from a distance and yelled out “wait for me!” As he approached us everyone started cheering for him as if he just won a marathon. His whole face lit up and he flexed his muscles and grinned. He then plonked himself on my lap and managed to blow out the candles and cut the cake. He talked with everyone and loved seeing his cousins. Then some nurse came and took him back as he wasn’t meant to be up and about after the anaesthetic. So the cousins took in turns seeing him up in his room.
My family had all pitched in and bought me a Pandora bracelet with 3 charms for my birthday. One of the charms has the words ‘family’ and ‘love’ on it. It was more than a bracelet. They were offering their full love and support for what lay ahead.
Each year I think back on that birthday. I vividly remember Ethan’s face and arms flexed up like a boxer as he walked towards the family. I remember how Ethan set himself up as the hero. I remember Blaise and Vienna sitting alongside us but they were happy to let their brother have the attention. I remember feeling love and support. I remember the despair and then the determination to be positive and strong. When I think of the year we spent on treatment and all of its ups and downs these things became a constant theme. We always had love and support from family and friends. I can’t express just how much of this we got and how much it still means. We had it from all over the globe. We were able to stay positive and focused on the end goal despite the hard times along the way. Ethan was a true champion the whole time as were his incredibly understanding and supportive siblings Vienna and Blaise.
So despite that birthday being a tough one what I remember most is all the love and support that was given then and sustained over the years.
This was more than I thought I’d write! However it is what I wanted to say. I actually wanted to write it on my birthday last year but just never found the energy to do it. Now that I’ve made the leap to writing again hopefully I’ll be back on here soon with some fun posts about the kids and our new life in Adelaide.