Twelve Months On…..

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Twelve Months On…..

It has been a massive couple of weeks for our family! Round three of immunotherapy last month went smoother than the previous rounds, much to our relief. At the start of this week, round four began. This round is four days of IL-2, which we call the backpack week, then four days of MAB and IL-2 together the following week. We have been able to do the first week as an outpatient, which is fabulous. The IL-2 runs continuously and Evie wears or carries a backpack around. Next week we head in for the second part of the round. This should be the second last treatment that she needs to be an inpatient for! We have also celebrated some pretty exciting events and reached some very important milestones over the past two weeks. It has been a time of celebration and reflection.

The 28th July marked six months since Evie had her Bone Marrow Transplant. I can’t believe it has been six months since she received that small bag of cells to help her recover from high dose chemo! She was so sick from the chemo. She was not eating, barely talking, and on morphine due to severe mucousitis. We have come a long way in six months! Evie has been in isolation since that day, and has had feeds running every night. When they told us Evie would have to be in isolation for at least six months, I remember thinking, ‘how are we going to do this?’ No going to the shops, no going to restaurants or cafes, or public places where there were lots of people. I couldn’t even pick up my eldest daughter from school. It was incredibly hard at times, but, we did it! We are still waiting for confirmation from blood tests that her immune system has fully recovered, and if it has, she will begin to get her immunisations again, as they were wiped out from the chemo. I feel pleased and relieved that we have reached this milestone, and she is doing so well. We had an incident where her NG tube was accidentally pulled out, and she has gone over a week without feeds. She has been eating so well, maintaining her weight, taking her medications orally, and even branching out with different types of food so there is more variety in her diet. We have been able to strongly encourage her to eat vegetables with dinner, which seems like a small thing, but it is a major breakthrough for her, and we are slowly seeing her nutrition recover and return. I feel so confident that once she has finished treatment, we will have no issues getting rid of the NG tube for good!

Six Months since transplant!

Six Months since transplant!

We also celebrated Evie’s third birthday last week. I have never felt more excited about a birthday than I did the night before Evie’s. As I thought back to her second birthday, she was so sick and miserable, and we did not know why at the time. This year, although she has not quite completed her treatment, she was so happy and healthy, and it was such a stark difference to the year before. It was such a delight to see her enjoying her special day. Throughout the day she kept saying, ‘I can’t believe it!’ Neither could I. She was genuinely grateful for each gift she was given, and it was a wonderful day.

The Birthday Girl

The Birthday Girl

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On Saturday we celebrated Evie’s birthday with family and friends with a ‘Strawberry Shortcake’ party! Evie has watched many hours of Strawberry Shortcake DVDs while being in hospital. The play therapist has also given Evie Strawberry and Lemon figurines to play with when she is in hospital, and she just absolutely loves them! Even when she is too sick to play with them, she clutches them, morning and night. Strawberry Shortcake has played a big part in Evie’s journey, so it was a special theme for her party. My beautiful mum made her a Strawberry Shortcake outfit, which she looked delicious in! It was so lovely to watch her playing with friends, and being a normal three year old. She told me it was ‘the best party ever!’ I felt so emotional the whole day, as once again I reflected back to a year ago. Last year, instead of celebrating with a party at home, our family and friends had to bring the party to her in the hospital. We squashed into the meeting room on Surgical Ward, which was the very same room which I had been given the dreaded news in just a few days earlier. Evie opened presents, and we all tried so hard to smile and be happy, but everyone was still in shock, and it didn’t feel like there was much to celebrate. I felt so grateful this year that we had her with us, that she was so happy, healthy and free of cancer! It was also so wonderful to have those same people who had huddled in that small room with us there to celebrate.

Our Strawberry Shortcake, ready for her party

Our Strawberry Shortcake, ready for her party

Tomorrow we reach yet another milestone. The 7th August was the day we first heard those devastating words that they had found a tumour in Evie’s stomach. Tomorrow marks twelve months since that day. I can’t believe it has been a whole year. I can still replay that day so clearly in my mind. I wish it were a blur, but it is not. I can still feel the wave of emotions and shock that I felt when I first heard those unbelievable words. I can see the tears in the Doctor’s eyes, and the genuine pain she felt having to tell me the news. I can feel the sheer panic of feeling like I needed Josh there with me, but at the same time the dread of having to tell him. I can feel the brokenness we felt as we held each other and sobbed. I can feel the sickening feeling in my stomach, and the fear of the unknown, the fear of what was to come, and the fear that we could lose our precious baby.

I also can’t believe what Evie has been through in the past year. She has spent a third of her life in and out of hospital. It has been so hard to watch her go through each stage of her treatment, Chemo, surgery, BMT, radiation and Immunotherapy, and feel so helpless a lot of the time. For me, there have been many tears shed, there have been dark days, many overwhelming moments, and many hours of worrying. It’s been hard, and sometimes I wonder how we have done it, how we are doing it! However, I can also see many good things that have come from the past year. I can see that Evie has made it through her treatment, she has not had any major complications or set backs and her body responded so well right from the start. I can see that her surgery went miraculously well, with no complications. I can see that although she has been through horrendous experiences, ¬† it does not seem to have done her damage, especially emotionally. She still enjoys going to hospital, and clinic, she plays Doctors with her big sister, or anyone else who is willing to be checked by Dr Evie, and she is a happy, well adjusted three year old who communicates clearly.

I also feel grateful for all the Doctors, Nurses, Play Therapists, Music Therapists, and Volunteers that have truly been amazing throughout her treatment. I am grateful to the other Parents and young heroes who have found themselves in similar battles, and have become friends of mine. They are the only people who can truly understand what you are going through, and the awful situation you find yourselves in becomes a bond. I am grateful to all the people, including people we have never met, who have sent care packages, gift cards, paintings, cards, pictures, and presents to Evie, Alicia and our family. I have seen the absolute best of humanity through our journey, and I only hope that I can give back to people who may find themselves in a difficult situation, as people have to us. I am incredibly grateful for our beautiful families and close friends who have continually supported us, whether it be by helping with Alicia, making meals, sending messages, phone calls, visits to hospital, being a listening ear or shoulder to cry on, constant prayers or for just being there. I am grateful that we appreciate things that we used to take for granted, and even the hard days are a gift.

I am grateful for my beautiful Alicia, who has coped with such a huge thing amazingly well, and has been such a loving, caring big sister to Evie. ¬†Although she has found it hard at times, I am so proud of her and how she has handled herself. I am grateful for my husband, who has had to be the sole provider for our family for a year. He has juggled full time work, visits to hospital, having Alicia, and staying in on weekends so I can have a break. Together, we have survived the hardest thing we have had to face as parents, and I am grateful that we had each other. Most of all, I am grateful that we have our Evie with us, that the treatment has worked so far, and although I wish she didn’t have to go through all the things she has, I am grateful for those horrible treatments, as they saved her life.

Yes, these past twelve months have been the hardest, most gruelling, challenging months, yet we still have much to be grateful for. We are not yet finished, and even when we finish treatment, it will never completely be over. Evie will have regular scans for five years, then will have long term follow ups for the rest of her life. However, we finally feel the end of this intense treatment is in sight. We can finally dream about having some normality back in our lives. Twelve months on, life looks very different to that bleak day when our world was changed forever. There are still challenges ahead, and there are still moments when the overwhelming reality that our baby had cancer hits us, but there is renewed hope. Last year holds many sad, challenging, and hard memories for me, but ahead of us there are beautiful moments and memories waiting to be made. I will be grateful for each and every one, and I can’t wait to make them as a family!

Here are some photos of some wonderful memories made at Evie’s party. Thank you to my sister for taking them for me. x

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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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Showing 2 comments
  • Christine Corrigan
    Reply

    Beautiful family. Continued prayer for your journey xx

  • Kel
    Reply

    You guys are soo Amazing. I am a cancer survivor myself – I hope u don’t mind me saying, let Evie’s immune system build itself over time, vaccine chemicals can devastate
    Kidneys and really knock a kid around developmentally. Some years of nutritional living would be advantageous to her body . It takes such a long time for the body to expel chemo. She’s your baby – it’s just my 2c worth

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