Sometimes life just doesn’t make sense. Things don’t always go to plan or turn out how you imagined. Just when things appear to be traveling along nicely, all of a sudden another hurdle pops up in front of you. We have had yet another hurdle in this seemingly endless and relentless marathon we find ourselves in. Another mountain looming ahead that we must climb.
Evie had been continuing to have chemo every three weeks as planned. We were in a bit of a routine, and although it still felt hard that we were having ongoing treatment, we were traveling along. In the last week of August she had a routine MRI under GA. It ended up being a very long day, as once she had recovered from being under she had to have her oral chemo, wait an hour and then be hooked up to her other chemo for an hour. It was a full nine hour day! That weekend we hosted our first ‘High Tea for a High Cause’. It was such a beautiful day. There was lovely food, and a great atmosphere as people shopped at the market stalls and mingled. We ended up raising $10,000 for The Kids’ Cancer Project, which I was so thrilled about! Still on a high from the amazing weekend, I received a call from her Doctor on the Monday to inform me there had been a very tiny dot reported on the MRI she had the week before. It was close to the original tumour site, but it hadn’t been on the previous MRI in May. It was so small that it could not be determined whether it was something, or absolutely nothing. It could be scar tissue, or it could be a new growth. Her MIBG scan two weeks later did not show anything, but we had been told it was possibly too small to be detected if it were something. There was no way to tell except to wait 6 weeks for a follow up MRI. Six weeks can feel like a lifetime! There was nothing we could do about it, so we decided not to try not to worry about it. Worrying wouldn’t achieve anything and Evie was well so we wanted to enjoy her.
The chemo schedule continued, and life went on. I honestly didn’t feel worried about the dot, however, my health began to suffer. I had a vey sore, stiff neck, I felt exhausted all the time, had bouts of feeling dizzy, and started having chest pains. I started stressing that I had an awful sickness, which made everything worse. I was on edge and very emotional. However, after some investigating and blood tests it appeared there was nothing seriously wrong with me, but that two years of stress and anxiety were catching up with me. I had physio for my neck, which was the result of tension, carrying a heavy bag around to clinic and sleeping on hospital beds. It took quite a few physio sessions over several weeks, taping and stretches to get it feeling better. My Doctor and I also decided it would be a good idea to talk to someone, to help with the stress and anxiety.
Just before the long weekend in October Evie spiked a temperature. We felt such dread at having to take her in, because of the coming long weekend, but also because I didn’t feel well enough to stay with Evie in hospital. Hospital beds and sore necks are not a great combination! Josh and I took her in and once she was settled in Emergency and started on antibiotics, I went home. I was very grateful I hadn’t stayed, as the night was spent in an isolation room in emergency. That means no bed for the parent and Josh sat in a chair awake all night. We finally got moved to a ward the following night. Evie had a very nasty cough but thankfully a chest x-ray showed her chest was clear. Even on antibiotics she continued to spike very high temperatures. It was a slight relief that one of her blood cultures came back positive for an infection on day 4. Yet at the same time we knew that automatically meant another seven days of specific antibiotics in hospital to treat the infection. Thanks to family members taking shifts with Josh, I only stayed 2 out of the 9 nights and we got through. It was nice to finally get out of hospital. We decided to have a weekend away and stayed with family in Forster. It was a great escape as we spent the day on a boat, fishing, swimming and relaxing.
The last week in October we headed into clinic to begin round 12 of chemo. I found out that day that Evie’s follow up MRI had been confirmed for the following day. Immediate butterflies! I knew the Doctor had requested an MRI for that week but because we had not heard anything, I assumed they couldn’t fit her in. It caught me off guard, but it was probably good that I didn’t have days or weeks stressing about it. Only 24 hours. There was so much riding on this one, and I just so badly wanted that dot gone, or for there to be no change. A couple of days later, I got the call from her Doctor to give us the results. Josh had worked from home so that he was there for the phone call, so I put it on speaker and waited to hear what he had to say with my heart pounding wildly. Unfortunately the call didn’t go how I would have liked. I knew as he hesitated that it wasn’t good news, and we heard the dreaded words that unfortunately the dot had grown. I started shaking and Josh took the phone off me and helped me sit down. Was this real? Were we really being told it had come back again? I listened to her Doctor tell us he had a few tricks up his sleeve, and that he was going to look at what was the best option for the next treatment. Because the spot was still small, he told us it would not start causing trouble any time soon, but he wanted to scrap chemo for the rest of the week so she was recovered for whatever was decided would be next. Evie was at Pre School, so it was just Josh and I at home. As we hugged each other and cried, I was so grateful that we were together. That I didn’t have to call him and tell him myself. We tried to distract ourselves and decided to file it away until we next met with the Doctor. We also decided we wouldn’t tell the girls until we knew what the plan was. It all felt a bit surreal as we seemingly went about life as normal. I think that being at home in our own environment and having to maintain some normality for the girls sake helped us to cope ok. It is also amazing at how quickly you adjust to circumstances when you’ve been at it a while.
The following week we met with the Doctor. He had spoken to a Neurosurgeon, who had said surgery was a possibility. He had spoken to the radiation Doctor who thought that radiation was an option, but for it to be effective it would have to be full head and spine radiation. He had also spoken to a Surgeon from New York who has a trial for relapsed Neuroblastoma which recurs in the brain. It involves surgery, radiation, chemo, and then an antibody drug which is injected directly into fluid of the brain through a reservoir. Given all these options, Evie’s Doctor thought that the New York treatment was the best option, however, the antibody part can only be done in New York. That was a lot to process! We had to wait two weeks to see him again while he tried to see whether the New York treatment was an option and decide what to do next. In the meantime, life continued on. Evie continued to go to Preschool, we carried on as best we could and tried to keep it together. We went on a couple of outings and did fun things as a family. We spent a day in Darling Harbour, we have been out for dinner and we went bowling. Evie also had an MIBG full body scan 2 weeks after the MRI which lit up the dot we knew about, confirming it was neuroblastoma. Fortunately the rest of the body was clear.
After several meetings with Evie’s Oncologist, and then meeting with the Neurosurgeon and Radiologist, there is a plan in place for where to next for Evie’s treatment. We found out this week that on Tuesday 8th December Evie will have neurosurgery to remove the tumour and a reservoir will be placed just under the skin on the other side of her head. This will most likely be used to inject either chemo or antibodies directly into the fluid of the brain. Mid January Evie will begin radiation. She will have 12 sessions of whole head and spine radiation, and five sessions of targeted radiation to the tumour site. We have yet to find out what will happen after that, whether it is possible to go to New York to have their antibody drug, or whether other drugs will be used if the New York option falls through. I have been told that Neuroblastoma seems to be quite sensitive to radiation, however, it has been avoided until now because of Evie’s age, and the long term affects that whole brain radiation can have.
Throughout the last few weeks I think I have felt every emotion possible, sometimes all on the one day. It’s all very overwhelming, and my coping mechanism has been to try and just focus on the day at hand. The few hours ahead of me. Thinking any further ahead only results in stressing about things that I can’t control and having anxiety attacks. I have had to ‘file away’ worries or questions that can’t immediately be answered until they are required to be brought out again. Dwelling on them achieves nothing. I have felt angry and devastated that once again Evie will have to go through treatments to try and rid her of this hideous disease. I have felt anxious about Alicia and how she will cope, and I have felt fear. At the same time, I have felt grateful that Evie is so well at the moment, and is in the best shape to fight it. As awful as the thought of treatment is, I have also felt grateful that we can still fight, that treatment is still an option.
Yesterday as Evie stood up on stage at her Preschool Christmas concert, I felt so immensely proud. After everything she has faced in the past two and a half years, she has blossomed at Preschool, made friends and has grown in confidence. I am continually blown away by her and her sweet spirit. Evie exudes life and grace, she is the epitome of her name. It breaks my heart to think that she has to face such big things for such a little person. Yet she has made it this far, and to look her you would not know what she has already been through. Maybe apart from her not having any hair! I will pray she is protected during this next stage and that her resilience will continue to shine through.
I struggle as I think about heading into next week. I dread Tuesday, as I think about Evie facing her third major surgery. I dread having to nervously wait for them to call us, to have to take her in to the tiny room where she will be given anaesthetic and see a hive of people buzzing around in the operating room, knowing they are preparing for my baby. I dread having to walk away once she is under, seeing her lying there so helplessly. I dread anxiously waiting for hours as I know she is being cut open on an operating table. I love Evie so much, so fiercely that I can only continue to believe she can beat this. I was having a moment crying on my bed shortly after finding out, and Evie came in and lay next to me. She stroked my face and said, ‘don’t worry, Mummy. I will look after you forever.’ She started singing her bedtime song I sing every night to me and I wept. My beautiful baby was comforting me and telling me she would look after me. She gives me strength. If only love were enough to make it all go away! But love her is what I can do and what I will do.
Love you to the moon and back, Evie! You’ve got this. x