Life is Wonderful!

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Life is Wonderful!

Ever felt like you are living a dream? Not the nightmare type, although I can definitely say I have lived through one or two of those! The type of dream that is so amazing, you are scared you will wake up soon and it will all be over. That’s how life has felt for the past six weeks. But so far, I haven’t woken up, and I am very much getting used to our new reality. Life is not perfect, and just this week we were hit with a couple of challenges to remind us of that fact! However, since going through such a traumatic experience, and surviving to tell the tale, you realise you have built up a resilience. Suddenly, challenges that would have overwhelmed and consumed, don’t seem as big or scary. The challenges still cause stress and worry, but then you remember what you have just been through, and you know you are stronger than what you think you are. You are reminded of what you have, and what is important. So, life is pretty wonderful, even in its imperfection!

Evie finished her final retinoic acid on the 26th October, completing her scheduled treatment protocol. It was such a huge relief to finish. What a feeling! I felt a huge weight lift off me, and I felt like I could breathe deeply for the first time in a long time. Evie was so excited, as we all were. We had reached the end, finally! We then had to wait for scan week, then scan results, and finally a spot to become available for her line to come out, pending the results were good. A mix up with the CT scan booking saw her having it a week early, but on the Emergency List. You never want to be on the Emergency List if you can help it! I was dreading the day, as we have had a pretty bad experience with being on it in the past, however, Evie was so amazing, and the morning of fasting and waiting went super smoothly. Miraculously, we were called the earliest possible time she could be early in the afternoon. She didn’t wake up well from the GA, so we were there till late in the afternoon, until she slept it off, but overall I was amazed at how well the day went. The following week, her Oncologist told us the wonderful news that her CT scan was all good. One down! Evie also had to have an MIBG scan. For this scan, she has an injection of MIBG the day before, then is normally sedated, and sleeps for most of the scan. This time was no different. She fell asleep after being given the sedation, slept for about an hour and a half, and peacefully woke up and watched DVDs for the remaining 15mins of the scan. Sadly, she is a pro at all of this now!

I wasn’t expecting to find out the results of the MIBG scan until the following week, when we met with her Oncologist, however, I got a phone call the day after her scan, informing us that both the MIBG scan and her Bone Marrow Biopsy were clear. Best phonecall ever!!!! We had been pretty confident that everything would be clear, but it was so nice to hear it, and to see those words in writing, ‘No Evidence of Disease’. It’s what you hope and pray for, and we had finally arrived at the end, with the best possible outcome! Needless to say, I was an emotional basketcase that afternoon!

The following week, we went in to clinic to see her Oncologist, on the mission to see if we could get a date for her central line to come out. I was thrilled and emotional when he organised then and there for it to come out the following week. One more week!!!!!! He was very happy and excited, saying, ‘we did it! You made it, Evie. We all made it.’ It wasn’t till later that I thought how rewarding it must be for them to have days where they get to the end of a child’s treatment, where they can give good news, instead of bad. I felt like giving him a big hug! Instead, I sincerely thanked him, and told him that I remembered the first time he sat down with us to give the official diagnosis, and what the plan was. He had told me that it would be a marathon, that she would have chemotherapy, Bone Marrow Transplant, radiation, immunotherapy, and if we got through that, there was hope. And here we were, at that point. Full of hope.

A week later, on the 18th November, our family headed to Westmead for the end of the final chapter of the journey. It was so exciting, and a wonderful feeling to be driving to the hospital excited, rather than with dread about what was to come. We headed to Middleton for her to have her line removed.  The last time we sat there was before her major surgery, 11 months ago to remove the tumour. I remember having butterflies, feeling sick as we waited for the anaesthetist to come and see us. This time, we had butterflies of excitement. We all said goodbye to her lines, and thanked them for everything they had done. Evie actually fell asleep as we waited outside the surgical room where she would have it removed. When I took her in to go under, they used her line for the final time to give her the anaesthetic, and she peacefully went to sleep, as she was already half asleep anyway. Just twenty minutes later they were wheeling her out, and we headed up to recovery. She had a big sleep after, but woke up so peacefully, and it was so surreal to lift up her shirt and see no lines!!!! A very significant day, and a final closure on what had been the nightmare of Neuroblastoma and treatment. One of my most favourite days, ever!

Evie still had to keep the dressing dry for about five days, but the day finally came when she could swim, and a proper bath, for the first time in almost 16months! I can’t describe adequately how amazing it felt to watch her jump into the pool, uninhibited and free. The smile on her face was priceless. Her first bath was also wonderful! She was lying down, smiling, laughing. I love this new season, and watching her rediscover the world, and the simple things she has missed out on! To celebrate the end, we went out for dinner with family. Some of the people that had supported, cried, laughed, and been there for us were there to celebrate with us.

Christmas is almost upon us, and as I think back to this time last year, we were preparing for her to go in for her major surgery. Although she made it out of hospital in time for Christmas at home, she wasn’t very well, and we ended up back in hospital a couple of days after Christmas, from being unwell from chemo. Oh how different this Christmas will be! We have so much to be grateful for, thankful for, and so much to celebrate. We have so much to look forward to in the New Year ahead. We don’t know what the future holds, but rather than a long road of treatment, chemo, and hospital stays looming ahead of us, suddenly life is full of opportunities and excitement. I’m sure there will be challenges ahead of us in 2015, but I know there is also wonderful memories and experiences, waiting to be created. Life is wonderful!

Last retinoic! Finished!!!

Last retinoic! Finished!!!

Pre School Orientation

Pre School Orientation

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Happy in recovery from line being removed!

Happy in recovery from line being removed!

A big day for our family. Exiting the hospital after her line was removed.

A big day for our family. Exiting the hospital after her line was removed.

Cousins celebrating together.

Cousins celebrating together.

Celebration dinner

Celebration dinner

Best friends.

Best friends.

First swim!!!

First swim!!!

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Christmas

Christmas

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First little hairdo!

First little hairdo!

Sarah
Sarah
A little vulnerable and apprehensive, this is my journey. I hope that it will encourage, help, inspire others, especially who find themselves in a similar situation, or going through a difficult circumstance, and also to share a little glimpse of our story with so many who have been praying for Evie.
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