Two Years: Still Fighting, Still Standing

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Two Years: Still Fighting, Still Standing

I’ve always been good with remembering dates of birthdays and wedding anniversaries. Unfortunately it appears that the bad dates stick with me, too! The 7th of August will always be a hard day, charged with emotions and horrible memories. Today is two years since I heard the most awful words, ‘Evie has a tumour’. The few weeks leading up to today have been challenging. I have found myself trying to navigate around a minefield of dates charged with hard and painful memories and events. The day that Evie first started showing signs of being unwell, the day we first went to hospital, only thinking we would be there one night. Memories of being transferred by Ambulance to Westmead and feeling frightened and anxious, spending a night in Emergency as there were no beds. All leading up to that moment where the Dr took me to a room and told me they had found a tumour. I find myself feeling sick as I relive moments that I would rather forget, but know I never will.

The school holidays meant lots of sister time together, playing and going to the park. Evie had a chemo round, but we also enjoyed going to the movies, a trip to the Mountains to see the snow, and taking the girls ice skating for the very first time! Before we knew it, scan week was upon us again, and the week leading up to the scan I was feeling anxious, emotional, irritated and basically not coping well with things that were normally second nature. We were coming up to the two year mark, still going with treatment with no idea how long we still had to go. There was no plan and I felt lost, frustrated, and stuck! I felt a whole lot of relief after receiving a phone call the afternoon of the scan to say Evie’s MIBG scan showed No Evidence of Disease. I knew I had been feeling anxious, but didn’t realise to what extent until I hung up shaking and felt that I could finally breathe without having a heavy feeling on my chest.

The following day I headed to clinic to meet with Evie’s Oncologist. He showed me the official report from the MIBG and I saw him write those three beautiful letters, NED on her file. He had Evie scheduled to start the next round the following week and I asked him the question, ‘Is there a plan? How long will Evie be receiving the treatment?’ His reply was that getting the two clear scans was a pleasant surprise. Going in to Evie starting the treatment after surgery, there was no reason for him to be overly optimistic that they would be effective. This is because unlike initial diagnosis, there is no set protocol or regime that has research and evidence to show that it may be effective. When it’s relapse, each case is so different. The fact that these drugs have worked for Evie means that he wants to continue to give them, and if he were to pluck a number out of the air, continue so she has it for 12-18months in total. My heart sunk a little, as we’ve done 5 months so far. As long as her scans continue to remain clear we could be looking at another 12months. 12months of having chemo every 3 weeks, dressing changes every week and taking her to hospital if she gets a fever. 12 more months of not really being able to plan anything in advance, of feeling like life is on hold…..

Far from ideal, we at least had a plan. One that mostly allowed us to spend as much time at home, and one where Evie was able to stay quite well and still enjoy life. The next round began and Evie breezed though it. We enjoyed the following week off, only needing to go to the hospital at the start of each round. Unfortunately, the start of the following week Evie woke with gunky, red and weeping eyes, looking unwell. She had a cough and then at lunch said her throat hurt when she ate. I took her temperature, which was flirting dangerously with the 38 mark in which we have to take her in. I made an appointment for her with my GP , but took her temperature just before leaving, having a bad feeling. Mother’s intuition was correct! I quickly packed our hospital bags for the first time in 5 months and headed to Emergency. Evie was quite excited about staying in hospital after so long! She remembered all the good things, like hash browns and coco pops, watching DVDs and her play therapist bringing her favourite toys to play with. Although it appeared Evie was battling a virus, she was well within herself and happy, and was eating and drinking. Once we had been there 48hours and she hadn’t had a temperature, we headed home. We were just in time to celebrate Evie’s birthday a couple of days later. I was so grateful we could be home on her birthday. She loved opening her presents, and although she didn’t attend Pre School that week, we took some cupcakes in and her class sang to her. The following day she had a small celebration with some family and a couple of friends. She had a wonderful time, getting upset when people started to go as she didn’t want it to end. We had a quiet afternoon watching movies on the lounge. As I cuddled her she was coughing a fair bit and felt a little warm, so I nervously took her temperature. It was 37.1 which was a little higher than normal, but normally nothing to worry about. After dinner, bath and pyjamas, she felt even warmer to touch, and my heart sank as the thermometer beeped at 38. After 10 minutes it was 38.3 and once again I packed the bags. I couldn’t help but get teary as I packed. I felt utterly exhausted, emotional and just wanted to climb into my own bed. I couldn’t bare to do it all again. Poor Alicia burst into tears, begging me not to go, saying it wasn’t fair. I cried the whole way to the hospital. It was already 8.30pm and I knew that there was a chance there weren’t going to be any beds on the ward and it would be a long night in Emergency. As a known Oncology patient, we never have to wait long to be seen by triage. Emergency was packed, but fortunately there was an isolation room available. Blood cultures were taken, antibiotics through IV started and I was told they wanted to do a chest x-ray to check she didn’t have pneumonia.

I was right about there being no beds available, so I lay with Evie on her bed as she finally slept at about 11pm. I was worried about her having pneumonia, it was so uncomfortable, plus there was so much noise outside in the main part of emergency. I tried to get some sleep, but it did not come. We went to get the x-ray done at 12.45am and then back to our isolation room. I finally got some sleep at about 1.30am and woke up to check the time and it was only 2.15am. After a long night with very little sleep the Doctor came and told me the x-ray was clear, and it appeared that Evie was battling a virus, but nothing serious. I was so relieved, but exhausted and feeling isolated as we still were waiting for a bed. I headed home late that afternoon while Daddy stayed in with Evie. They were finally moved to the ward at 8.30pm and I enjoyed a very decent sleep in my own bed and a little bit of time with Alicia.

The following day Evie was due to start her next round of chemo. Her counts were good, her chest was clear, even though her cough sounded nasty, and she was eating and drinking, so they decided to go ahead with the treatment. We had the first two days done on the ward, then were discharged on the Tuesday after our 48 hours fever-free time. Our outreach nurse came out the remainder of the week and Evie finished the last day today. We are hoping that she does not spike anymore and we can remain home for the next two weeks.

I know that the 7th August will never be an easy day for me, and it was especially hard today as two years on we still find ourselves in this fight. Being in Emergency so close to the date when I first spent my night before her diagnosis was challenging and emotional. Walking past the area where we originally were and seeing the bay where her cot was made me feel sick. It’s amazing how powerful memories can be and how the associated emotions and physical responses to them can come flooding back, even if uninvited. I wish that on this day I could say she was finished, and we were 9 months post finishing treatment. But then again I wish I didn’t have to remember this day at all. I wish we could be planning grand holidays overseas and moving on with our life. I wish Evie had long hair and didn’t know that because she has had chemo this week she can’t have a bath with her sister for another week. But I am also grateful that two years on our Evie is still here with us, able to fight. I am grateful that she is NED, and doing so well. I am grateful that although we are still doing treatment, we can do so much of it from home, and she does not suffer side effects. If this is what it takes for her to have the best chance at beating this for good, then that is what we will do!

Two years and still fighting, but also still standing!

My brave girl like this for her 1hr45min scan

My brave girl like this for her 1hr45min scan

Snow!

Snow!

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Ice Skating

Ice Skating

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Evie in her second home. It had been a while, but she slotted right back in!

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Kindred spirits, no matter where they are

Kindred spirits, no matter where they are

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Happy 4th Birthday!

Happy 4th Birthday!

Excited about her little party!

Excited about her little party!

Twirling in her birthday dress

Twirling in her birthday dress

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Back in hospital

Back in hospital

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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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Comments
  • Jodie smith
    Reply

    I am in awe of you Sarah, speechless all I can do is silently cry for you all and pray like crazy. All your family everyone, aunties, uncles , cousins and grandparents are in my prayers. Jods

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