Round Four

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Round Four

There have been posts I have been so excited to write and share since beginning this blog. There have been others that have been hard to write. This one has been the hardest. There have been so many times I have gone to start writing, and I just haven’t known how to express everything. The past three months have probably been the hardest and most challenging. Round four: the biggest battle we have had to face.

There is always a level of stress and anxiety that comes with the lead up to scan day. No matter how well your child seems, you never quite feel at ease until the scan is done and you get the results you were desperately hoping for. In the past, I have always felt a little anxious about scans, but I have been able to use techniques to try and get some peace about it, or feel a sense that it’s going to be okay. However, in the lead up to Evie’s scan in mid January, my anxiety was at an all time high, and I could not shake it, no matter how hard I tried. There was just so much to lose. Life had almost been too good to be true, we were coming up to it being a whole year of no treatment and clear scans, Evie had rung the bell, and was about to start Kindergarten. I didn’t want anything to ruin it all…..

January 18th we nervously headed into hospital for Evie’s MIBG scan. A few minutes into the scan, Josh went and had a peek on the screen. He normally does this, and while we are no experts in reading scans, we have been doing this long enough to know what a good one looks like to what a bad scan looks like. As soon as he walked back in I could tell he had seen something. I felt like I had been punched very hard in the stomach, but had to continue reading a story to Evie. We spent the rest of the hour and a half scan feeling so sick, and desperately hoping that he had misread the scan. Just torture.

After her scan was finished, we had to go to clinic to get something looked at for Evie. We weren’t meant to see her Doctor for results until the following day, but we asked if he could have a quick look as we were so anxious. As soon as he came into the room, I knew that our worst fears were reality. The cancer was back. For the fourth time, our world came crashing round us again.

I can tell you now, no matter how many times you have to hear that your girl has a tumour, it doesn’t get any easier. And in fact this time was maybe the worst. We had enjoyed a truly beautiful year of no treatment, clear scans, and had started to believe that maybe it was over. Maybe she had beaten it, against all odds. And each time it comes back, it gets scary, everything is uncertain and we have less options than before. All those awful feelings of dread come flooding back. So many thoughts flooded my mind, all the ‘what ifs?’ and wondering how we were going to get through this. An MRI was booked for the end of the week and her Doctor told us he would have a think and look at what we could possibly do next, and we went home with heavy hearts.

Not only did we have to deal with all of our emotions, but we had to work out how and what we were going to tell the girls. They are older now and there is more of an understanding. Alicia was heartbroken, and had so many questions, many of which I could not answer. Questions that you never dream your seven year old would have to ask you. Heartwrenching questions. Evie was pretty matter-of-fact about it all at first, but seeing Alicia so upset all day, by bedtime Evie burst into tears and said, ‘why do I have to have cancer again? I don’t want to have cancer.’ A very low point in my life. To have to hear your five year old utter those words, my heart broke even more than I thought possible.

Evie did her MRI awake for the first time. We had a play session beforehand so Evie could have a practise and see what it was going to be like. Because she was not under general anaesthetic, I was able to be in with her while she had the scan. I had tears in my eyes the whole time, as once again I was flawed by how amazing she was. I held her hand and just kept saying, ‘please God, let her be ok.’ A sentence I have said over and over in the past three and a half years. It was all just so unfair.

The following week we had a phone call from the Doctor at radiation. We went in to meet with her to discuss radiation as a possible treatment. We had been told there were two spots, in the same spot where it had recurred before. However, the MRI also showed a much smaller spot on the other side of her head that the MIBG scan had not shown up. Another blow. It was explained that because Evie had already had full head radiation, that was probably not an option. It would have to be a higher dose, and would cause permanent damage. The Doctor felt the best option would be a higher dose of radiation, but targeted just to the spots. She also said she would discuss the possibility of surgery to remove the tumours with Evie’s Neurosurgeon, as radiation is more effective with less cells to deal with. In the meantime, they all wanted Evie to get to her fist day of school the following week.

Later that week, Evie started getting headaches. I felt so sick every time she told me her brain was sore. We managed it at home with panadol, but on the Sunday, they became too intense and panadol was not holding them at bay. We took her in to Emergency, and she was started on steroids to reduce any swelling, and was put on stronger pain relief. We were admitted overnight, and my heart absolutely tore in two as it meant Evie would miss her very first day of kindergarten. Alicia lost the plot, as she had been looking forward to Evie starting school, and things were falling apart. Nothing was going as planned and for Alicia, that is very stressful. Evie wanted me to stay in hospital with her, which made Alicia devastated that I wouldn’t be able to take her to school the following morning. We worked out a plan for me to stay in, then Josh came and swapped with me early in the morning so I could take Alicia to school. I put on a brave face as I dropped her off, but all I kept thinking was, Evie should be here, too. It was a really tough day. Two days later Evie was discharged with a pain relief plan, and surgery was scheduled for the following week. Evie managed three short days at school, but she was very tired and emotional from the medication she was on.

7th February we headed into Westmead for Evie to have her fourth major surgery, and third neurosurgery. Another thing that never gets easier no matter how many times you have to do it. Evie was second on the list, which meant waiting till the afternoon. She was fasting, on steroids, and after a long wait she got so frustrated and started crying and saying she wanted to go home. I was tempted to carry her out of there in my arms and do just that! So when Evie finally got called to go in, she was so relieved that she skipped down the corridors. Once again I watched her go to sleep so peacefully, gave her a kiss, told her I loved her and that I would see her soon. I walked back through those corridors with tears in my eyes, just incredulous at how many times we had had to do these motions. And I knew we still had the worse part ahead of us: waiting while she is in surgery, hoping she was okay. We had an amazing little support crew of family that waited with us, as well as a beautiful friend of mine who came in especially just to be there with me. We also let Alicia come and wait at the hospital. We finally got called to say it was finished and it went well. With a weight lifted, we waited to get called in to recovery so we could finally see her, and kiss her. Evie recovered really well, however, being in hospital was tough. The post op brain surgery room is six beds, which means sometimes six families all sharing one room and lots of noise. Evie was on steroids till a couple of weeks after surgery, and it completely changed her temperament. She would yell, was calling people names, and it was pretty stressful, even though I knew it was the steroids. We were grateful to be going home six days after surgery.

A couple of weeks later, Evie had some extensive swelling on her head at the wound. I was really concerned and took her in on the Monday. We stayed overnight for observation. Evie had no other symptoms, and there was no indication of infection, so We were sent home and told to keep an eye on it, and hopefully her body would reabsorb the fluid that was swelling. Just as Evie was set to return to school, the Thursday morning I had to take her back to emergency instead of school, as her wound was leaking. By that night Evie was in surgery once again. Josh and I were shell shocked and down hearted, as they had decided the best option was to reopen her wound, clean out the area and remove a section of her bone in case that was infected. When we went to see her in recovery, she was upset and cranky, and her head was concave where the bone had been removed. It was possibly one of my lowest points. It just all felt so endless, and like we couldn’t catch a break. That she couldn’t catch a break. How many times would be have to watch Evie go through things like this?

The fluid from her head grew a bug very quickly, so she was put on appropriate IV antibiotics. Infectious diseases decided that the antibiotics would need to go for three weeks, and radiation would not be able to start until the antibiotics was complete and she was free of infection. Another blow. She also had a helmet made for her, which she would have to wear once out of hospital to protect her head. Evie was in hospital for a total of nine days, and we were able to finish the rest of the antibiotics from home with infusers, which I was taught how to manage and change.

It was hard not to feel anxious that radiation had been delayed. There was still that one spot that had not been removed, and knowing we were delaying zapping it was hard. But we managed to finish the remainder of the antibiotics at home. The next step was transitioning Evie back in to school. Evie was quite nervous about going back to school, as she now had to wear a helmet. We tried to work out a way where she would feel more comfortable. It seemed that tying a scarf over the helmet worked best. We decided to visit her class during the last week of her antibiotics in the hope she could return the following week. Her teacher wore a scarf that day, as did one of Evie’s friends who had come to visit her in hospital. We took some extra scarves in and Evie handed them out to her class and they all wore them for the afternoon. It did my heart wonders to see her with her class and beginning to feel comfortable. Her classmates were so beautiful, all so excited to see her and making her feel so loved.

The following week she did return to school, as well as start radiation. It was a big week and she did so incredibly well! Radiation was only five sessions and although it was the third time she had had radiation treatment, it was the first time she had done it awake. She was bolted to the bed with a special mask, and I had to leave the room and watch her on a screen. It was very confronting to see her lying bolted to the bed. Once again I was teary watching her, feeling immense pride.

Despite how rough it has been, Evie has once again blown us away. Don’t get me wrong, she has had her moments of getting upset, or expressing frustration at having to be in hospital, but overall she is such an incredible little girl. She has adjusted really well to wearing the helmet, and is so sensible in knowing when it is safe for her to have a break and take it off for a while, and when she really needs to wear it. She is full of life and is doing so well back at school. Seeing her starting to read makes me get teary, watching her run cross country had me a mess, there’s just no stopping her!

And we now find ourselves with scan week looming once again. We will find out if radiation has worked, and pray that all tumours are gone, and there are no new ones. People often say to me, ‘you’re so strong! I don’t know how you do it.’ Honestly, I don’t know how I do it either. I only do it because I have no choice. And this time round, there have been many times where I have felt like I have not done it very well. No one sees the days where you burst into tears in the shower, or the moments you have to just go to your room and curl up on your bed and breathe deeply to avoid an anxiety attack. But they happen. And I’ve learnt that that’s ok. Because living with the very real fear that you could lose your child isn’t something you can always cope with. Having to watch your child deal with such huge curve balls that life throws at her, it’s one of the hardest things ever. Some days I’m ok, but most days I struggle with it all. I struggle with the fact that we are back here yet again. I struggle with feeling like our life is on hold. I struggle with the fact that we still have to do scans, that Everything feels uncertain. I struggle with the fact that we can’t just live a blissful life, plan holidays or have a five year plan of what we want to do with our life. I struggle with feelings of loneliness, despite having incredible family and friends, as I’m the one that has to ride this out. I sometimes even struggle to hold on to hope, when I feel I have been so let down. And then Evie will run up to me and jump in my arms and say, ‘I love you, Mummy’, or I watch her living life and smiling, and I know I have to fight to hold on to hope, even if it’s just by my very fingertips that I’m grasping at it. I have to still believe, I have to still hope. I love my family, my girl, too much to stop believing and hoping, as hard and scary as it has become.

Those of you who know me will know that music has always been a massive part of my life. Songs have really helped me get through tough times, and I’ve even written songs during very dark days. I have to admit that this time round, even songs have been a struggle. However, lyrics to a song I was listening to today spoke to me, and I was reminded that nothing can steal my song unless I allow it to. My song may be shaky, and my voice broken and just a whisper at the moment, but I will sing.

‘Even when my breath is weak, I will sing, I will sing. Even in my suffering, I will sing, I will sing. Even when the shadows fall, I will sing, I will sing. Even when the night is long, I will sing, I will sing.’ (Kari Jobe lyrics).

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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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