It’s amazing what can happen in such a short amount of time. It is been three months since we were thrown our most devastating curve ball yet, and it has been a whirlwind of events and emotions. We have experienced the lowest of lows, but also the sweetest and happiest moments in those short three months.
Evie absolutely powered through her three cycles of chemo. Apart from her hair gradually falling out, you could not tell she was having treatment. Unlike the drugs that were administered during her initial treatment protocol, these drugs have not dropped her counts as drastically. This means she hasn’t needed any blood transfusions and her immune system has still been able to fight off bugs and germs. While we are still careful, we haven’t felt the need to keep her in such strict isolation as she was in the first time round. Evie missed out on so much during the 16months she had treatment, and spent so much time in hospital so it has been nice this time to allow and watch her still being able to enjoy life and share in experiences that most three year olds have. Evie has joined in on her sister’s dance class the past couple of weeks. She has absolutely loved it, and had a beaming face the whole lesson. We also spent a couple of hours with her Pre-School class. Although she was shy at first, by the end she had gained confidence and was interacting with the other children, contributing to the class discussions and happily playing during free play. When we were leaving, she ran over to her teacher and leapt into her arms for a hug. Happy tears from me as I stood back and watched. Her Doctor is happy for her to resume Pre School on her current treatment, so we may look at doing that soon, even if it’s only for a few hours at first. Evie also enjoyed celebrating at her Aunty’s Baby Shower and going to a couple of birthday parties. One of the birthday parties she had a pony ride! Her beaming face as she sat up on the horse was priceless!!!
While we have been enjoying life outside of hospital and the fact that Evie being so well, scan day was looming and was constantly in the back of our minds. Scans are always pretty terrifying, but they have never been as crucial as this one. I felt like our life had been on hold and decisions couldn’t be made until the scans were done and we knew the outcome and what direction it would take our lives in. Evie’s Doctor had told us that if the scans showed no change or an improvement, Evie would continue on the treatment plan she was on. If there were new spots or the spots that were there had grown, they would have to try something else. Crunch time! I had an underlying peace leading up to the scans. I fought hard to hold onto it, especially when my mind started to go to that ever so present, ‘what if?’. However, Evie had been so well, confident and happy, we felt sure that it could only mean the drugs were working. That’s what we were praying, hoping and believing for, so all that was left to do was trust.
Last Tuesday we went in for her MIBG injection. The following day was a very early start, as she was first on the list for MRI. Everything went smoothly, she went off under GA very peacefully, and Josh and I were left to nervously wait until the scan had finished and we were called in once she started to wake up. As we were waiting, someone came and called for Mrs Weir. As he approached, my already nervous tummy went up a gear. He introduced himself as the head of the Department and sat himself down. My heart sank and I prepared for the worst. I was thrilled and elated when he explained that the ABC were here to do a news story on Nuclear Medicine and asked if they would be able to take some footage of Evie whilst she was having her MIBG scan. Utterly relieved, we agreed to them filming Evie in her scan, and they ended up asking me a few questions. We will keep you posted about the details of when the story is airing!
We were finally called in to see Evie, and almost straight away we took her next door to have her MIBG scan. In the past, Evie has always been sedated for her MIBG scan. It is at least an hour and a half and she gets strapped down. As she had already had general anaesthetic, they were unable to give her the sedation. The hope was that she would still be drowsy from being under and would sleep for first half of the scan. Things didn’t go to plan, but Evie was an absolute angel for the whole scan! She watched a movie, and it wasn’t until towards the end when they held her head down in one position for 15mins and then another position for a further 15mins while the camera took shots that she got upset. Without moving, tears rolled down her face and she asked when she cold be unstrapped. It broke my heart but I was so proud of her i felt like I was going to burst! What an amazing little human.
With the scans done, all that was left to do was to wait until we saw her Doctor for results the following day. I still felt peace but also felt nervous. We didn’t have to wait too long before the Doctor called us in. This was a life-changing moment. This could potentially be one of the best days, or another awful day. Before we had even sat down and he had closed the door, he said the best words I could have heard. ‘Well, I only have good news to tell you this time’. I looked at Josh and a wave of relief flooded through me. Tears welled up and I felt a massive weight lift off. It got even better as he showed us the scans and reports which showed there was no evidence of disease present. No new spots, old spots gone, no uptake of MIBG. This was the best possible outcome. Such a wonderful day!We walked out of the hospital feeling light and on top of the world. We had been given our miracle.
I was able to truly celebrate Mother’s Day a couple of days later knowing that Evie was well. It was the best gift I could have asked for. To top off our fabulous week our beautiful Niece, Sharlize Grace was born on Mother’s Day. What an amazing week! Definitely one of my favourites. We are looking forward to heading up to QLD in a couple of weeks to meet her and spend time with family.
Evie has started the next round of chemo this week. She will have three rounds in total and then have another lot of scans. Obviously we are not out of the woods. Even when she finishes treatment, she will have scans and regular check ups for five years before they are confident it will not return. There is still a long road ahead, but we will continue to pray and believe for miracles and we will celebrate the victories as they come. Life is still not ideal, but I have learnt to try and live in the present and not to stress about the future. To always try and believe for the best outcome. I am so grateful for our miracle!