Discovering New Wings.

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Discovering New Wings.

Just a little over one week ago, our Evie girl reached a huge milestone, completing her final hospitalised treatment!!! On 11th September at about 9.30pm, the fifth and final round of MAB infusion through her line finished. As the Nurse took it down for the final time, I sat in the dark hospital room with tears of joy, relief and amazement rolling down my face, and I turned to Josh and whispered quietly, ‘She did it! We did it!’ I couldn’t believe it. This was the moment we had been working towards since the beginning of this horrendous journey, and here we finally were! When Evie woke up the next morning, her room was decorated with balloons and butterflies. She woke up in such a happy mood, and it wasn’t long before her Nurse capped her off. Freedom!!! Evie relished in walking around her room, playing with her toys, visiting the play room and putting on her special party dress, ready for a celebration. Nanny, Poppy, big Sis, Aunty Heidi and her little cousin came with containers of cupcakes, cuddles and tears of joy!

Evie’s play therapist brought in some cupcakes she had made for the girls to ice and decorate, as well as a certificate congratulating Evie for completing treatment. We also had a fun session with the Music Therapist, as what is a party without some music! After singing, dancing and rocking out on the instruments, we handed out cupcakes to all the families on the ward. It was a lovely thing for us to be able to do, as quite a few of the families were new, or in the early stages of the treatment journey. I thought it was special for us to be able to share our celebration with them, and for them to see someone at the end of the journey. I wanted to make a big deal of the last big hospital stay, especially for Alicia, and to be able to celebrate how brave both our girls have been. It was special that we could celebrate together, and Daddy even joined us after a morning at work.

The Nurses were all so excited for us. Evie and Alicia gave them ‘Thank You’ balloons and cupcakes. They have been so wonderful and caring throughout, becoming like our second family! We are so grateful for the care we have been given, and many of the nurses have watched Evie grow up in hospital over the past year.┬áThe best part about the celebration day was that Evie was so well, and had not really had any reactions or dramas with the final MAB, and she was discharged at lunchtime! We were able to walk out of the ward, hopefully for the last time as an inpatient. What a feeling!

Since walking out of those hospital doors, Evie has been so well. She has been on retinoic acid for one week, and has one week left of the ‘orange medicine’, as she refers to it! The sixth and final round of immunotherapy begins next week, which is a break for two weeks, then two more weeks of retinoic acid to be taken at home before scans. We have been told her immune system has recovered well from BMT, so we have been able to venture out a little more. It has been so lovely to be able to do activities as a family, and to watch Evie discover the world again, to discover new wings. So much of her childhood in the past year has been abnormal, and it is incredible to watch her amazement at what seems like very mundane, everyday things. The other day I took her to our local Shopping Plaza for the first time this year. As we strolled through the shops she would exclaim, ‘Wow, there are lots of people, Mummy’. She is used to being isolated or only being around small groups of people, mainly close family or friends, and to be in such a large place with a bustling crowd of people was a new experience for her! We also spontaneously went bowling the other day, and it was such fun to watch the excitement on their faces as they bowled. The girls loved it, and Evie ended up winning, wanting, ‘just one more go, please Mummy’ when the game finished. Just this week, Evie even decided she wanted to start wearing undies and going to the toilet! It’s the best feeling to see her blossoming.

I guess it’s a bit like we are all discovering our wings again. Wings of freedom, wings of hope. Daring to dream about the possibilities of what our future holds, rather than just living day by day, not being able to plan ahead, and counting down to the next hospital stay. I’ve got to say, it’s a pretty amazing feeling!

Cheeky and ready for our last MAB round!

Cheeky and ready for our last MAB round!

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In her element

In her element

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Last day of MAB!

Last day of MAB!

Finished!!!

Finished!!!

Two very happy girls

Two very happy girls

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Woo Hoo!!!!!

Woo Hoo!!!!!

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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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Comments
  • Aanika
    Reply

    My very fave post too Sarah!! Tears of joy for you guys!! Love those photos, so happy for your beautiful girl and your family. all our love xxx

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