One Day at a Time
It has not been the easiest start to 2016. Nothing terrible has happened, but I have struggled with the fact that instead of packing bags for holidays and spending long, summer days on the beach or poolside, we have been packing hospital bags and heading off to radiation early each morning. It’s difficult to be excited about a year that begins with radiation treatment, and holds uncertainty and many question marks. Also, as 2015 came to an end, it was hard not to look back and feel disappointed and ripped off that it turned out so differently to how I dreamed and hoped it would. The year that held such hope and possibility turned out to be yet another hard slog, full of challenges and unexpected heartache. I know that in between the heartache and challenges there were beautiful, happy moments, and for those I am grateful. But it was another tough year. A year of relapse, treatment, surgery and a whole lot of anxiety.
One of the most challenging and anxiety-filled weeks of last year was the week of Evie’s surgery. I took Evie in on the Monday 7th December for a pre-admissions clinic. Her surgery was scheduled for the following day, but I would not find out what time until later that afternoon. We met with an anaesthetist, and then met with one the the surgical registrars. He went through what the surgery would entail, the possible risks and recovery time. The main risk was that upon waking up, Evie may experience weakness on her right side. As it was the second time she was having this operation and due to the area where the tumour was, the risk of such weakness was slightly increased from the first operation. That weakness could last a couple of days, or could last a few months. In most cases in children with weakness after surgery, it corrects itself, but we were told there was a very small chance it could be permanent. Obviously there was a risk of infection after the surgery, and they would be keeping a close eye on her post surgery, especially as she would have a reservoir straight to the fluid of the brain. Amongst all the information, I also found out that the surgery had been moved back a day. This was fantastic news for me, as it meant I was able to attend Alicia’s Kindergarten Presentation. I had been stressing about how I was going to be there for Evie while she had her surgery, and be there for Alicia on an important day for her. This problem was now solved and I went home feeling a bit more at peace about the week ahead.
December 8th In a cruel twist of fate, Evie spiked a temperature, and so at 4am I headed into Emergency. Evie had a congested nose and a sore throat, but just in case it was a line infection, she was put on IV antibiotics. Thankfully, my Mum came in to sit with Evie while I went to watch Alicia at her School Presentation. She played the part of Mary in the Nativity scene and ended up receiving a trophy for Excellence in Personal Learning. I was so proud as I watched her. It had been a difficult year for her, and despite all the challenges, she had thrived and excelled in her first year of school. I was so glad I had been able to be there for her.
All was good back at the hospital, and Evie was happy and well, but spiked another temperature early that night. Her surgery was scheduled for the next afternoon. The surgical team were keeping a close eye on her, but would not make the decision whether surgery would go ahead until the morning.
December 9th Evie had an uneventful night and didn’t spike another temperature, but that morning it was decided surgery would be postponed as they wanted to be on the safe side. They did not want to risk operating if her body was brewing something or if she had a source of infection already somewhere in her body. She needed to be well going in to surgery in order for her to be able to recover. They wanted to wait and see what happened in the next couple of days and aim for Friday. I was ok with the decision, but it was frustrating and stressful that the week was not going as planned. You work yourself up emotionally for something as big as major surgery, and then to have it not happened made me feel emotional and like I just wanted it over. I was in emotional limbo land! Meanwhile, Evie was happy and well, no blood cultures were coming back as having any bugs, and she was having a great time in her old stomping ground of Camperdown Ward, laughing with the Nurses and having a great time!
December 10th The next day we expected a quiet and uneventful day. Evie was capped off and enjoying time in the play room, skipping up and down the ward corridor, and dancing with the Nurses at the front desk. Our Nurse suddenly came in and told me to start fasting Evie, as there was a possibility of the surgery happening that afternoon due to a cancellation in theatre. Panic mode! That is something big to be thrown when you are not expecting it, and you haven’t had time to emotionally or mentally prepare for. Just as I started to make a few phone calls, in particular to Daddy who had gone to work, the Nurse came back and told us to continue fasting just in case, but they were just checking the situation and it may not happen. There is a whole lot of waiting when your child is in hospital, but waiting to find out if your child is having major neurosurgery that afternoon, well that was agonising! It turned out that the surgery didn’t happen that day, but Evie was on the Emergency list for the following day. That’s not ideal! The emergency list means you don’t have a guaranteed spot, and we could be waiting all day and not end up having it done. The NUM tried to see whether it was better for us to be booked in for early next week, but the Surgical team wanted to push ahead and try for the following day. As it was our 10 year wedding anniversary, we took the opportunity for a gatepass, ordered Thai and all had dinner together at home before I headed back into hospital with Evie, still not sure whether she would be having surgery the next day.
December 11th Evie’s very first major surgery to remove her initial tumour in 2013 had been on December 11th. Exactly two years later we woke up to the Nurse telling us Evie had been called for her MRI and surgery. I was shocked, as I wasn’t expecting it to happen first thing! I quickly got dressed while we waited for a porter and then off we went to her pre-op MRI. As Evie goes under GA for an MRI, I would be saying goodbye to her there and not seeing her again till after the surgery. As we waited for the Anaesthetist and everyone to be ready for Evie, I asked her if I could pray for her, and as I quietly prayed for her and held her hand, I began to cry. She asked why I was crying, to which I told her I loved her so much and I was going to miss her while she was in her operation. She said, ‘oh, Mummy, I am crying because you are so beautiful!’ More tears from me! She was so calm and peaceful and that gave me strength. She went off to sleep calm and peacefully and I tearily walked back to the room. I had a big cry, had a shower and got myself some breakfast. We had never been inpatients on the day of surgery, so it was nice to have a place to go back to and wait, and have things I could do. I started packing up the room, as we would be moved to a different ward after she was able to leave recovery. Josh came in and we had started to watch something to distract ourselves. We had been told it would be 3-4 hours in theatre, so we weren’t expecting to hear anything till sometime in the early afternoon. At 11.30 Josh’s phone rang. It was recovery to say that Evie had finished in theatre and we could go and wait outside recovery to be called. Everything had gone well and the Surgeon just wanted to see us before we went to see her. For the second time that day I was in shock! I was not expecting to hear from them so quickly. With utter relief washing over me, we raced up to Recovery. The surgeon came and saw us, saying everything had gone really well. She was able to remove all tumour cells they could see, the reservoir was placed in and she was happy with the initial response of reaction with Evie’s movement. We thanked her and my eyes welled with tears or relief and gratitude. Finally, it was over. Shortly after we were called in to see Evie. She was calm and peaceful and still sleepy. I kissed her and told her how proud of her I was.
We were moved to CT ward once they were happy with her in recovery. Evie had a big bandage over her head, like a cap. She was not a fan of her hat, but other than that she was doing amazingly. She slept most of the afternoon, only being roused for hourly neuro obs. The Dr was happy with her movement and said there didn’t seem to be an difference between the right and left. Such a relief! Just to make our insane week a little more interesting, Alicia had her dance concert on that evening. I asked Evie if she was ok if her Poppy sat with her while Daddy and I went to watch Alicia dance and then I would come back and stay with her in overnight. She said yes, and I almost burst into tears. What an amazing girl. I was utterly exhausted, but off I went to watch Alicia dance. There was one dance that Evie was meant to be dancing in with Alicia’s class. The teacher had made up a special dance for Evie to be in, and they did it anyway and Alicia dance Evie’s part on her behalf. Needless to say I cried the whole way through, and wished Evie were there dancing. I got back to the hospital late that night with quite a prominent headache and hoped I would get a few hours of sleep in a row in between obs, pumps beeping and the three or four other patients in the room!!!
December 12th Evie had a post op MRI scheduled and was very excited about going to the Oncology Christmas Party which was on that day. Unfortunately the MRI happened to be right when the party was, and she had a big sleep after and missed it. But she still got her present from Santa, and we decided to go to the Starlight room to get her face painted later that day. The post op MRI showed that they had in fact removed all visible tumour, and the reservoir was in the right place, all looked good. Throughout the day Evie was also able to shed some of the extra attachments she had obtained. Cannula, cathode, and even the bandage was able to come off, much to her delight! She still had tape on her wounds, but they were happy with how the wounds looked. Because the cathode was out, she was able to go for a walk for the first time. We walked to the bathroom, quite unsteadily, and the right foot was a little weak, like she did not have as much control. I tried not to stress about it, and hoped it was just because she had not walked for a while.
December 13th Evie woke up with a swollen eye. It was so swollen that she couldn’t open it. I buzzed the nurse just to check everything was ok. She assured me that it was pretty normal, and that it may get worse before it gets better. It was just due to pressure, and part of the healing process. Daddy and Alicia came in for the day and Evie requested to go to the park. A swollen eye and being a little unsteady on her feet did not stop her! Poor Daddy was chasing around after her with his heart in his mouth. We couldn’t believe she was running around the park just days after having neurosurgery. Just amazing. She didn’t stop the whole day, wanting to go to the play room, go to the park, on the go all day. I was exhausted! It had been almost a week since I had slept at home, so I had a night at home in my own bed.
December 14th Evie called me in the morning to tell me she had a surprise for me. When I got in to the hospital, I found out her surprise was her eye was back to normal, and she was so excited! The Dr had said that she may get home later that day, but he had to check with the surgeon. I didn’t expect that to happen, but later that afternoon, a Dr came in to check her, and said she looked to good to be in hospital. I laughed, but he said, ‘I’m serious. Do you want to go home?’ I was completely taken aback, and told him I wasn’t expecting that! We had to make sure we could get her meds, but unbelievably we were heading home by 7.30pm just four days after her surgery! One of the best trips home, knowing it was behind us and she had smashed through yet another big thing amazingly. I felt emotionally and physically wrecked after the massive week. I felt like I had run back and forth from hospital, trying to juggle being there for both the girls, and having all the plans go out the window had been so stressful. But it was over, and we were home!
We had a follow up appointment at clinic, and a quick check in with the Surgical Dr to check her wounds, but then we were given the ok to have a break from clinic over Christmas and until radiation started mid January. Our last appointment for the year was 23rd December for Evie’s planning session for radiation. Now we just had to hope that Evie stayed well and did not get a temperature. Thankfully, we were able to enjoy Christmas at home and lots of quality time with family. We tried not to take Evie too many places where she would be in contact with lots of children. So parks and play lands were out of the question! However, we did a few small outings so we could enjoy our time out of hospital and the fact that it was school holidays. We went to the movies, took the girls to the circus for the first time, and went to a special Ballet Performance that we got tickets to for Christmas.
Which brings us to radiation. We are currently 11 sessions through the 17 sessions of radiation. I have to be honest, leading up to radiation, I was feeling pretty emotional and down about it all. And I am still struggling. Knowing that Evie was going to be going under general anaesthetic every day, having radiation beamed throughout her head and spine, and knowing the damaging side effects is just heartbreaking. Neuroblastoma is known to be quite sensitive to radiation, but the reason it has been avoided since her relapse is that for it to be effective it would have to be full head and spine radiation and they don’t like to do that for children so young. It can have damaging long term effects on learning, and we have been told that although they would expect Evie to be able to complete High School, she may need help. Not what you want to hear for your baby girl. As with any of the treatments, you can’t think ahead about what damage it may do later on, you just have to focus on the now and the fact that this radiation is hopefully saving her life.
As Evie had already had radiation to the abdomen with her original treatment, we knew how the process worked and what to expect. Her time each morning was 7.30 and she is an outpatient, so we are only there for about an hour and a half. We started radiation on Tuesday 19th January and breezed through the first four days. By the Friday I was pretty exhausted and was really looking forward to a break over the weekend. However, when we got home, Evie was quite lethargic and ended up falling asleep on the lounge. When she woke up and I took her to the toilet she felt burning hot and I instantly knew we would be heading to Emergency. Sure enough, her temperature was 39 and off we went. Other than a cold, nothing was found to be wrong and we were home on Sunday, ready to head back in on Monday morning for the next week of radiation! Thankfully Australia Day fell on the Tuesday, so we had a day off and thoroughly enjoyed it! Since then we have had a smooth run and hopefully will get through the rest of the sessions without any dramas or hold ups.
It’s so hard not to get down about the fact that it’s now been two and a half years and we are still in the thick of it. Life around us is moving on, and yet we feel stuck in this world of treatment. Evie will have an MIBG scan at the end of February, but then we are uncertain of what comes next. It is stressful to not be able to commit to anything or plan ahead. It is stressful to not know how much longer treatment will go for. I desperately wish for it to be over and for our Evie to be able to swim, and enjoy all things that a four year old should. I long for a day when our family life isn’t dictated by cancer. But then I look at Evie, the one who is actually physically going through the treatment, scans, procedures, and I am inspired to rise above. You think as a parent that you will be teaching your children about life, but so often they end up teaching us things. And as a parent of a sick child, you think your role is to give them strength, but so often Evie has been the one to give me strength even without knowing. I find the strength to continue to just look at one day at a time. I find myself marvelling at the fact that Evie is so well, despite what she has been through. That she is a confident, sweet and well-adjusted little human being. I find myself feeling immensely proud at both of my girls, and remind myself that while life doesn’t seem fair, at the end of the day I am lucky to be called their Mum. I am lucky to have my husband by my side. There’s going to be tough days, and there will be good ones. I sure hope that at the end of this year I can look back on 2016 as being a tough year, but one we got through and came out the other side. Until then, we continue to walk on one day at a time!