The Nightmare.

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The Nightmare.

In Life

There are two ‘R’ words in the world of cancer. One is ‘remission’ and that is what you hope for. The other is ‘relapse’, what you fear and dread but hope will never happen. We have now experienced both, and the 11th of February will be yet another date that will forever be engrained into my mind. It is the date that Evie had her 3 month MIBG scan. I took her to Westmead for what we thought was to be a routine scan, but came away a couple of days later, our lives once again turned upside-down.

The actual scan went smoothly, and we were just getting ready to leave when the Nuclear Med Doctor came bustling up to me. He asked me if I were seeing her Oncologist for results that afternoon, to which I replied that we weren’t and we were actually about to go home. I felt instant concern as this did not normally happen. I normally came in to see the Doctor for results a few days after or someone called me to say the scan was all good. He looked at me and said, ‘there’s something there’. My stomach dropped, my head started spinning, and my heart was pounding as I went into utter shock and disbelief. My mind was actually trying to tell me that he hadn’t just said that, or maybe he was looking at the wrong scan. This could not be happening. How could there be something there? Evie had been so well, just started Pre-School, life was starting to feel like it was getting back on track. I was left to wait for him to call Evie’s Doctor. I thought I was going to be sick. This was not how today was meant to go…….

After what seemed like an eternity, the Doctor returned informing me that her Doctor wasn’t in the hospital, but the Fellow was on his way to have a look at the scan with him. Again, more agonising waiting until finally I was ushered into a room, my heart absolutely pounding so fast as I dreaded what was to come. The Clinical Nurse Consultant and Social Worker sat with me as the Doctor very gently told me that the scan showed a tumour in Evie’s head. It also showed there was some swelling around the mass, causing some pressure on the brain. Because of the pressure they wanted to keep her overnight, start her on steroids to reduce the swelling and book her in for an MRI the following day to try and get some more information and answers. I felt so numb as I tried to register everything I was hearing. Surely this was a nightmare that I would soon wake up from. As I sat there and started to shake with the shock, my beautiful Evie said to me, ‘Mummy, I love you’. Then came the tears. How could this happen to my beautiful sweet baby, again? How could I bare to watch her go through more suffering? How could my heart possibly handle yet more stress and anxiety and heartache? How was Alicia going to handle her little sister and best friend going in and out of hospital? How was I going to tell Josh? How were we going to get through this? My mind was racing, going through different scenarios and of course even going to the worse case scenario. What if we lost her? How would we all possibly survive if Evie didn’t? My gut felt like I had been punched as I knew I had to call Josh and tell him the shattering news.

It was so hard to be thrust back into the world we thought was behind us. We felt scared, devastated, anxious, depressed, heart broken and defeated. Evie was kept in for two nights to be observed, start on steroids and anti-seziure meds. We had the Neurosurgeons and Oncology  team coming to check on her, and the next day she had the MRI on her brain and spine, as well as a bone marrow biopsy. At the same time she was going under for the MRI, they decided to put a new central line in. Our hearts sunk a little bit more, as we knew that meant they knew treatment would be needed. It was happening all over again, but this time we were so much more aware. One of my lowest points was walking into recovery and seeing that new line and fresh blood under the dressing. That night we were transferred to the Oncology ward and taken to the little green room that we were originally in the very first time we were in Camperdown 18 months ago when we first began this heart wrenching journey. Rock bottom.

The next day the MRI results confirmed what we already feared, the neuroblastoma had returned. As Evie’s Oncologist was away that week, we were told she was well enough to go home and continue the meds until we could see him in clinic the next week to see what the plan would be. Although it was good to get out of the hospital, it was also hard. The Evie we were taking home was not the same Evie we came in with. She was cranky, fragile, tired, and oh so hungry, all from the steroids. Poor Alicia asked why Evie had a central line again, and summed up what we were all feeling. ‘It just got good, Mummy, and now it’s all bad again.’ Oh how true those words rang. I cuddled her, we cried and I told her that’s exactly how we all felt, but we were going to try and get Evie better so hopefully it can go back to how it was.

The day we were due to see her Oncologist I wanted to stay curled up in bed and sleep the day away. I felt physically sick and anxious as to what he would say. Fortunately, her bone marrow biopsy had come back clear, and there were no other visible spots. It just appeared to be the one contained mass. The Doctor spoke to the Neurosurgeon then and there, and it was decided that the best course of action was to remove the tumour before beginning further treatment. We were pleased with this decision, although scary, as it got her out of immediate danger and hopefully they could remove the bulk of it. We walked away having signed a consent form for Evie to have neurosurgery within the week!

24th February. Another date that I will replay in my mind. Surgery day. Josh and I headed in to hospital early for her to be admitted. The knots in the stomach were at an all time high as we sat waiting for her to be called in for surgery. I was worried about how Evie would cope fasting, as she had been so ravenous on the steroids, but she was so good, unfortunately showing how much of a pro she was at all of this. She was very understanding, and put in her order for twisties and banana bread when she woke up. Suddenly, I was gowning up to take her in to go under. It all happens so quickly, and before I knew it she was peacefully asleep in my arms. They transferred her to the bed, I said goodbye, gave her a kiss and told her I loved her as I choked up and the tears welled up. Evie has now been under about 25 times and I can tell you it never gets eaiser to walk away from them lying there so helplessly! Now all we could do was wait. Oh so awful! My stomach felt like someone was twisting my insides and around the time they said surgery would start I got a raging headache. The anxiety of waiting while your child has major surgery can’t compare to anything else I have felt. Knowing she is in the hands of the surgeon, lying helplessly on a surgical table with people buzzing around her and someone is cutting her head open takes anxiety to a whole other level! For four hours we sat, went for walks, prayed, and waited. I tried to distract myself by reading, but the words were jumbled on the page and I kept re-reading the same paragraph. It felt so much longer than four hours, but we finally got the call to say that Evie was out of surgery and in recovery. I couldn’t get in there quick enough and felt such relief when I saw her beautiful face. I kissed her chubby cheeks and told her how happy I was to see her and how much I loved her. I couldn’t help but smile through my tears as she cried and asked if she could eat yet!

The day after surgery Evie had a CT scan and the following day she went under GA yet again for a post surgery MRI. The day after the MRI her Oncologist came to see me, telling us the trials he had thought she would be eligible for had fallen though as he looked into them more. However, there were two out of three drugs from one of the trials that she could have and he wanted to start them the following week. He also showed me the MRI scan which had a small spot which had not been on the previous scan that they suspected was a new cancerous spot. Not what I wanted to hear. As the Doctor said, it didn’t change the treatment plan. Chemo would have been the next step whether there were no spots or ten. Surgery was never going to be the cure or fix. It just seemed like we couldn’t catch a break. Blow by blow, we were feeling exhausted and deflated. It was getting hard to remain positive, but one positive was that Evie was recovering from surgery well, and we were allowed to take Evie home for gate passes over the weekend.

Exactly one week after surgery, Evie began her first of five days of chemo. My heart felt very heavy as they hooked her up. I really didn’t want to have to do this again. For Evie to have to go through this. The side effects, the hair loss, worrying about temperatures, having to be isolated so she doesn’t pick up any bugs while her immunity is low. And the biggest worry is whether the drugs are working, and whether they are doing what they are meant to. Whilst we were in hospital, Evie enjoyed getting her nails done by Captain La La, and we went to visit the ‘secret garden’, a multi-sensory garden which you can book and have all to yourself. Evie coped very well with the chemo, and after two nights we were discharged and able to complete the final two days as an outpatient. They had also been weaning her off the steroids, much to my relief. Evie picked up at home, and continued to eat and not suffer from side effects. We now have two weeks before she has her second round. She is so much more settled and happy being off the steroids. We will be visiting clinic once or twice a week to check blood counts and have possible transfusions if required, but unless she spikes a temperature we should be able to remain at home.

I’m not sure why we have to walk this path. I’m not sure why Evie got cancer, or why the treatment that she responded to so well couldn’t manage to keep it away permanently. I don’t know if these drugs will work, and I don’t know what her next scans will show. None of it makes sense and the past few weeks have been some of our darkest and hardest. But I have to keep reminding myself about the things I do know. I know that I love Evie fiercely, and I will fight, hope, trust and believe that she will get through this. I know that I have two beautiful girls and a wonderful husband. I know that although we have been pushed to our absolute limits over the past two years, we are still standing and we have each other. I know we are not alone, although at times it feels so lonely. I know we have wonderful support, and there is an army of people standing with us and fighting and praying with us. I know I have friends who I have met through this journey who support me and understand what we are going through. I know that all I can do is to love and be there for Evie and Alicia, focus on just one day, and continue to trust as I have my whole life. I know I must celebrate the good days, and enjoy when we are home together. I know I have to remember to sometimes just breathe……

The day before scan

The day before scan

Playing my songs with Evie

Playing my songs with Evie

After surgery x

After surgery x

hours after neurosurgery and playing the ipad!

hours after neurosurgery and playing the ipad!

Daily manicure

Daily manicure

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Beautiful card from Pre-School

Beautiful card from Pre-School

The Secret Garden

The Secret Garden

Home!!

Home!!

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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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IMG_0154A beautiful quilt from my Nan x