Greatest Victory Yet!

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Greatest Victory Yet!

Life is definitely full of ups and downs no matter who you are. However, I feel that when you have faced a situation like we have for the past three years, the ups and downs are extreme. Emotions are heightened, the stakes are so high, what you are facing is unimaginable, and you are plunged in to the very depths of lows and reach the very highest of highs. I honestly cannot believe what has happened since my last post and how quickly life can change. I would have never dreamed at the start of the year that we would be experiencing one of our greatest victories yet.

When I last posted, Evie was in the middle of head and spine radiation. By the second week of February the sixteen rounds had been completed, and although it was exhausting, Evie breezed through without any side effects or complications. The following week we had a follow up appointment with the Neurosurgeon from her surgery in December. Evie had a CT scan and the Neurosurgeon was happy with how everything was looking, and wanted an MRI booked for about 6 weeks time. The following week was scan week and she had an MIBG scan, which we were thrilled came back showing No Evidence of Disease. There was no plan forward as we were still waiting to hear back from the hospital in New York regarding the trial. We needed to know how much it was going to cost, and whether it was going to work. It was hard to have such a massive event up in the air. We felt in limbo, and we couldn’t make any plans or commitments for the year. It was a strange feeling to not know what was next.

We finally heard back from New York, but the amount for just the trial was absurd. There had been mention that the Government may be able to fund it, but it was way too much and our Doctor didn’t think the results of the trial were convincing enough to be going across the other side of the world and potentially having to sell our house to afford it! Once we knew New York was off the cards, it felt like a relief know one way or the other whether it was happening. But where to from here? Evie’s Doctor still hadn’t decided what should be next. He didn’t see the point in giving her drugs just for the sake of giving drugs, especially if there was no evidence it would better her chances. She had already had most of the drugs she could have, and she wasn’t eligible for any trials in Australia at this point. He threw up the idea of taking her line out, and letting her enjoy life and see what happened. He said to leave it with him, and we were left still feeling in limbo. Was she finished? What would the rest of the year hold? It may sound weird, but living in limbo is one of the hardest things to do. It was really getting to me, and I felt pretty stressed, anxious, and wasn’t really coping, even though things appeared to be going well.

While we waited to find out what was next, I decided we needed to try and get on with life. We couldn’t just put our life on hold indefinitely, so we made a bit of a spontaneous decision to go to Queensland during the school holidays. We wanted to seize  the opportunity while Evie was not having treatment and was feeling well. A little over a week before we were due for our road tip to Queensland, Evie spiked a temperature. My heart sank as I took her in to Emergency that Saturday night. When you have been going for two and a half years, it just feels so exhausting and you feel so weary. And it always seemed to happen on the weekends! Evie was started on antibiotics, blood cultures were taken, and I thought I was going to be spending the night in Emergency. I curled up in the bed with Evie, hoping to get a little bit of sleep, but luckily we got moved to a ward at about midnight. I was hoping that it was just a viral bug and we would be back home within 48 hours. However, on the Monday we were told her blood cultures had come back positive. Big sigh, as that meant a week on antibiotics.

The next day I was approached with a very surprising but exciting proposal. I was asked how I would feel if Evie were to get her line out. Her line wasn’t being used for treatment or taking bloods, and here we were in hospital because of it. So her Doctor was wondering why not take it out? It took me by surprise but after speaking to Josh, we both decided it was a great idea. I knew Evie would be absolutely delighted to get her line out, and it would mean she could enjoy the water when we went to QLD. Obviously there was the thought that she may need a new line if anything were to come back, but I knew without a doubt that if we were to ask Evie what she wanted she would opt for her line out! So we agreed, and Evie was put on the Emergency list to get her line removed on the following day! She was so excited. I knew it could be a long day of fasting, on the Emergency list, but we were told that if she had not been done by the time her original surgeon would fit her in once he had finished his list for the day. It was coming out no matter what! What an incredible turn of events. What I thought was a terrible situation, back in hospital, line infection, all of a sudden was an amazing moment where we wold say goodbye to her line, and go to QLD without having to worry about it getting infected, having to get her line flushed, or stressing about it getting wet. Just crazy!

Incredibly, she was called first up in the morning. Off we went to theatre. We said farewell and thank you to the line for doing its job, and then I kissed her goodbye as she went off to sleep. When she woke up, she just kept saying, ‘I can’t believe my line is out. It’s gone!’ We had gate passes and We got to pick up Alicia and spend the afternoon with her. I have never seen two girls so excited! It was such a happy day. As a precaution, they kept Evie on antibiotics for a following 48 hours. We were due to head home on the Friday, and it just so happened that she got a spot for her MRI. She had the MRI under GA on the Friday and then we headed home. We had the weekend to pack and get ready for our road trip to QLD. We left early on the Monday morning feeling pretty amazing. The only thing that was hanging over our heads were the results of Evie’s MRI, which we hadn’t heard about. But we decided to try and forget about that and enjoy our week swimming, spending time with family and relaxing. We were fortunate to stay at a beautiful resort, thank you to a friend of the family. It had a pool, spa and was walking distance to a beach. The girls loved relaxing in the spa, and catching up with cousins. It was wonderful!

By the time we arrived home after our week in QLD I still hadn’t heard about the results of Evie’s MRI. I started to stress that maybe it was bad, and that’s why they hadn’t contacted me. I ended up phoning that week. I was told that a tiny dot had been reported on the MRI, but that the Doctor wasn’t overly concerned at this point. My heart sank, as I felt like we had already been in this position, and it was hard not to immediately think, ‘here we go, again.’ I decided to try and just focus on the facts, and really be disciplined with my thoughts, to not let the worries and ‘what ifs?’ run away in my mind. The fact was, that at the moment, it was just a dot. It could end up being nothing. The fact was that she was happy, healthy and didn’t have a line. We really wanted to go on a trip to New Zealand before her next MRI, as we didn’t know if we would get another opportunity. Her Doctor was fine with this, and decided that both the MRI and MIBG scan cold be done when we got back. So we booked our flights and made plans to go on our first overseas trip!

With so much to look forward to, it was easy not to dwell on ‘the dot’ and ‘what if?’. It was also made easy with the fact that we weren’t going back and forth to hospital. We were very lucky to be asked to be guests at a NSW Swifts game on Mother’s Day. The girls had the privilege of taking the game ball out on to the court to give to the players, and then we had awesome seats to watch the game. I couldn’t help but get teary as I watched them nervously take the ball out. I was so proud and I thought it was pretty amazing that they were given opportunities that we would have never had before Evie got sick.

We celebrated our gorgeous Alicia’s seventh birthday on 6th June, and then two days later we excitedly headed to the airport for our trip to New Zealand! I was so excited and just couldn’t wait to get away, relax, escape, spend time with my sister and her family, and explore a new country. It was a long day of travel, but the girls were pretty good and we arrived in Nelson tired but happy! Our time in New Zealand was just wonderful! There was a couple of misty, rainy days, but most days were glorious, sunny days which were perfect for exploring. I was absolutely in awe of how beautiful the scenery was. Everywhere I looked there was a breathtaking view, and all so peaceful and majestic. I found it so healing. I also loved spending time with my gorgeous nephew, who I had missed dearly, and having cuppas and catch ups with my sister. It was hard to leave New Zealand as I knew that upon our return there would be a scan coming up, and it would be back to reality with a thud!

I really did feel a bit down when we got back. It had been so easy not to think about all things cancer and hospital whilst removed from our everyday surroundings. Not long after we got home I was given the date for Evie’s MIBG scan which would be the following week. Instant dread filled my tummy and I felt anxious. One thing I have learnt throughout the past few years is that you can’t control the thoughts that come, and you can’t always control those anxious feelings. What you can control is what you do with them. So I decided I would try to remain positive and fight for peace. To not dwell on those thoughts, but acknowledge them and then let them go. Every time I felt anxious, I tried to let go of those feelings and focus and pray for peace, for Evie, for healing, and for those scans to be clear! I wish I could say it had been easy, but it was an exhausting discipline! And it didn’t completely take away the nervous feeling, but anyone who has faced their child having a scan would tell you it’s impossible not to have that feeling!

The day before Evie’s scan I had to take her in to Westmead for her to have the MIBG injection. Because she doesn’t have a central line anymore, it had to be done by needle. I tried to gently explain to her before, but she didn’t quite grasp what I meant until we were in there and it was crunch time. There were tears and resistance, but with a few jellybeans and talking her gently through it, the job was done and she was smiling again in no time. Josh came in with me on scan day. I never like doing them alone, but especially today as we just didn’t know what was going to happen. We went in just dreading the scan and the tortuous waiting for the results! This scan was also the first one since Evie had given up her dummy, so I was unsure as to how she was going to cope. I needn’t have worried, as she was amazing! We anxiously sat in the scan. I can’t adequately describe how it feels to sit and watch your child while she has a scan. How tortuous it is to wonder what is showing on the screen. The immense pride you feel for your child who is lying there strapped and taped down whilst a big machine is just inches away from her face. And how sad it makes you feel that she even has to be there in the first place. That it is second nature to her. I hate it! About three quarters of the way into the scan, one of the Nuclear Med reporting Doctors came in to look at the screen. My heart sank as that never happens. It also sank because it was the same Doctor who had told me that Evie’s scan had something there when she very first relapsed. I pointed it out to Josh, and we both thought we were going to hear bad news. What other reason would he be coming in to look before the scan had even finished? He then came into the scan room and both Josh and I braced ourselves for hearing the worst. To our utter and dumbfounded relief, the Doctor told us that he had looked at the plane pictures and there was definitely nothing from the neck down. He then said the head picture also showed nothing, and although he still had to look at the 3D pictures, it was looking good. There was nothing big and obvious like the last time. It took a few seconds for us to compute what he was saying and once it sunk in, Josh screamed out and we both had tears streaming down. This never happens! They never tell you results while the scan is going on, and you normally have to wait to see the Oncology Doctor once the reporting Dr had written the official report. We hugged each other and cried and just could not believe it! Part of us wondered whether we should be celebrating yet, before the official report, but we couldn’t help it! We felt on top of the world!

The following day I was waiting for a phone call to find out official results, as Evie’s consultant was away. It was the longest day, and I ended up having to call in the afternoon as I still hadn’t heard from them. Finally they returned my call, and told us that the official report was that the scan was good and there was no evidence of residual take up of MIBG anywhere. I have had some good phone calls and really bad ones, but this would probably be up there with the best one ever! We could truly celebrate now! And it feels like we have been ever since! Rather than not being able to shake the anxious, nervous feeling, I haven’t been able to shake the ecstatic feeling that everything is amazing!

Obviously we still have a long road ahead of us. This is another victory in our battle, but this one felt HUGE! It has been the first time that Evie has had a clear scan whilst being off treatment. We had the tiny dot from the MRI hanging over our heads, and to me, this scan felt like crunch time. A turning point. Evie will continue to have scans every three months and see what happens, and it won’t be until she has had no evidence of disease for five years that she will be considered to have beaten it. Alicia asked me a few weeks ago, ‘Mum, what if it happens again?’ I told her I couldn’t promise that it wouldn’t. But that we would hope and pray that it didn’t  and that we would enjoy the fact that right now she is healthy and well and has no line. And that if it did happen again, we would face it together as a family, the way we always have.

I don’t know what the future holds. All I can focus on is the facts and the fact is that right now, life is wonderful! Evie is happy, healthy and cancer-free. She is able to enjoy life without her line and without having to go in and out of hospital, without having to have yucky medicines, radiation or surgeries. For the first time in three years, I feel like a weight has lifted off. I feel so light and free. I know I will most likely feel anxious again next scan, but until then, I am going to enjoy this feeling. As Evie perfectly put it, ‘My scan shows I have no more yucky things inside and I don’t need any yucky medicine!’

Radiation completed!

Radiation completed!

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The cutest Easter Bunny!

The cutest Easter Bunny!

Smiling, even in hospital

Smiling, even in hospital

No line! Yay!!!

No line! Yay!!!

Excitement for Eve's line to be out

Excitement for Eve’s line to be out

Happy to be sleeping at home

Happy to be sleeping at home

Road Trip!

Road Trip!

Swimming!

Swimming!

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Crazy hair at the Netball

Crazy hair at the Netball

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Passports ready for New Zealand

Passports ready for New Zealand

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Hair growing back

Hair growing back

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Happy Birthday, Alicia x

Happy Birthday, Alicia x

Hey there, New Zealand!

Hey there, New Zealand!

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Clear scan! Yippee!!!!

Clear scan! Yippee!!!!

 

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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Showing 3 comments
  • Karen Saunders
    Reply

    I have been following Evie’s journey and was thrilled to read about your greatest victory yet. God is great and you and your family are such an inspiration. God bless you all!

  • Kathy Murray
    Reply

    What an amazing journey. I share in your joy as I watch precious Evie loving life at prep and so involved in all activities with her friends. She is the most beautiful child, so well adjusted, a beaming smile and always willing to give everything a go. Evie is a credit to you Sarah and Josh you are wonderful parents. I thank God for the opportunity to be part of your journey and like you I give Him all the glory.One more thing Sarah you write from the heart and you have such a talent. I wonder if you would think of putting your journey into a book….

  • sharon Honey
    Reply

    WOW , WOW WOW, God is good, He knows everything, we don’t . Praising God with you all as a family. Thanks for sharing the journey, God has used you to touch the hearts of others

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Day four and heading home!thumb_thumb_dsc01545_1024_1024