Welcome to Immunotherapy.

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Welcome to Immunotherapy.

We made it through the pointy end of cycle one of immunotherapy. It was quite possibly one of the most intense weeks I have experienced, and my heart still feels wrung out and exhausted from it all!

Sunday week ago we were due in at the hospital about 7.30pm so the infusion, which is called MAB, could start the following day. As we had only been back home for four nights from our last stint in hospital, and Josh had been busy with work, we decided to make the most of our morning together. We made our way up the Blue Mountains to enjoy a beautiful Autumn morning. I always remember the trees being spectacular in Autumn in the Mountains, and it’s always that little bit quieter up there. Perfect when you can’t be around a lot of people. The Blue Mountains also hold a very special place in my heart. My Grandparents lived in Wentworth Falls and I have such fond memories of visiting them. So much of the Mountains is them. This particular day was the first anniversary of my beautiful Grandfather’s death. It had been a whole year since I had received that shocking phone call which, unbeknownst to me, was to be the start of the most challenging year of my life. As we sat in the park at Wentworth Falls, I reflected on the wonderful man he was, the beautiful memories I had of him, how much I loved him and how lucky I had been to have him as my Granddad.

We had the park to ourselves and the girls had a wonderful time playing. We crunched Autumn leaves under our shoes, and threw them in the air. We went on a little bushwalk, crossing bridges and discovering fairy toadstools in the magical forrest we had entered. We drove to Leura and had hot chocolates, and returned home with full, warm hearts and memories. That night, Evie and I headed into Westmead. I felt slightly anxious about what the week would hold, especially as she was so happy and well. I didn’t know what to expect that next day…..

Evie was actually asleep when they hooked her up to MAB the first day. Before it even started she was given Panadol, Benadryl, and a couple of pushes of morphine plus a low background so she had some in her system. The nurse said that it generally took a couple of hours before they saw any side effects. The first hour went very smoothly, but it all changed fairly suddenly. Evie woke up and was very restless, tossing and turning, trying to go back to sleep, then with a BAM the pain overtook her little body. The pain and fear in her eyes was too much for me to bear. She writhed with pain, tossing and turning, trying to get in a comfortable position, screaming all the while. There was nothing I could do to help, comfort or distract her. It was one of the hardest things I have had to do. Watching her in such pain and feeling so powerless went against everything inside me as her Mummy. Tears welled in my eyes, and I just tried to tell her it was ok, and I loved her. She was given pushes of morphine, but once it was apparent that it wasn’t enough, the ‘Pain Team’ was called, her dose was upped and she was given a different pain relief med along with the morphine. After an hour of screaming and agony, the pain relief finally started to work and she conked out to sleep for a few hours. MAB ran for about 12 hours, so overnight she got a break before it started again the next day.

I felt pretty nervous as it was getting hooked up the second day, although they assured me they started her pain relief at what she ended up on the day before. It was a better day pain-wise, but she struggled with high temperatures, a high heart rate, her blood pressure started to drop ¬†and she was retaining fluids. All side effects expected when giving MAB. We had our first rapid response for the day when her heart rate was consistently sitting over 170. It was the first of four that afternoon! They tried running her MAB at half the rate to try and give her body a little bit of a break, but it didn’t do much. Her morphine was upped, in case she was in pain. When that didn’t help, the MAB infusion was paused and she was given extra fluid to see if that would bring her heart rate down. It did a little, but they couldn’t give her more fluid, as it was leaking from her veins into her tissue. They started MAB again at half rate and decided to push on, widening the margins for her heart rate and blood pressure slightly before rapid response had to be called. All the nurses kept assuring me this was to be expected, fairly normal, and one looked at me and said, ‘Welcome to MAB!’

The next day, Evie was so flat and weary, but we had to press on, as we were only half way through round one. Two more days. Two. More. Days. I wondered how we would get through, but kept reminding myself this was a good thing. Our Nurse the day before had told me that although Immunotherapy is hard, in the three or so years they had been trialling it, she had not seen a child who had come into immuno with no living disease relapse. That definitely helped to spur me on, dig deep and push on.

The last two days of MAB were much of the same, although we did not have any more rapid responses. Her heart rate remained high, low blood pressures, and she was very flat and exhausted. To add insult to injury, she also started getting tummy pains from being constipated from being on morphine. She was given meds to help her bowel movements, and she also had to have a transfusion of fluids which are thicker than the usual fluids given, so they would stay in her veins. This seemed to help, and they were then able to give her something to help her wee out the excess fluids that she was retaining. I was relieved and joyous when that last infusion of MAB finished just before 10pm on the Thursday night, however, that night she was very restless, waking up with tummy pains every hour or two, so they kept her morphine going. She woke up pretty miserable, and I felt so exhausted physically and emotionally. I couldn’t take much more of seeing her in pain and unwell when just four days ago she had been running around in the park. Poor Alicia came in that day, so desperate for Evie to play with her, but Evie was just not up to it. It made me so sad, and I could feel myself sinking with the heaviness of everything this week had been. Everything about the week had been hard. Josh came in that night so I could have a night in my own bed. As I was driving home, my exhaustion, emotions and heart-ache took over. That stretch on the M4 when I’m by myself always does it to me! I felt so weary from the week, the journey, of holding it together, of having to watch Evie go through this. How could I possibly do this another four times over the next 5 months?

A good cry and a sleep in my own bed did wonders. The laxatives had also done wonders for Evie, and poor Josh was on duty the night they began to work! When I went back into the hospital, Evie seemed in better spirits and told me her ‘tummy feels better.’ She was discharged by Midday and we all headed home together. Yay! We had made it through the nasty part of round one.¬†Unfortunately, that afternoon Evie started complaining of a sore tummy, crying and only wanted to lay on the lounge. I started to wonder whether we should have come home. I put it down to her tummy still being a bit sensitive, and just generally being worn out from a pretty big week. She ended up vomiting that night, and I had to stop her feeds. She hadn’t eaten for days and the feeds were running much lower than usual, but she just couldn’t tolerate them. I felt pretty anxious, but decided to leave it till the morning, as she didn’t have a temperature. The next day she was miserable, wouldn’t eat, and was still saying she had a sore tummy. I was very close to ringing the ward, as the nurses had told me that once the MAB stopped the symptoms went away quickly. I had expected her to be fine by now! She did pick up a little that afternoon, and started to eat little bits. I struggled the whole day. I felt so emotional, I was so sick of it all, sick of stressing, of seeing her unwell, sick of the whole situation and the stress it had put on our family. Sometimes it can hit you like a slap in the face; my baby has cancer. This was one such day. It was overwhelming and unbelievable, and I just wanted it all to go away. Fortunately, with hugs from my family, a few tears and several cups of tea, i made it through the day. That night we managed to get feeds into Evie overnight and the next morning, I finally felt like we had glimpses of our Evie back.

I will not look forward to doing that stint again, but at least we know a little more of what to expect, and I know we can make it through, even if it is hard and intense. The last couple of days we have enjoyed some time at home, lapping up this beautiful Autumn weather. Mind you, there is never a complete escape, as Evie has had injections for 2 weeks straight, and rather than go in to the hospital every day I have had to do them. This week Evie has also had to start taking retinoic acid, which cannot go through her nasal tube, so I have to get her to take that orally and record in a diary. She has that for two weeks then she will start the next round.

We are so close to the finish line, but still so far. After our week of MAB, it feels even longer. Rather than the home stretch being like a 100m sprint, it is a bit of a longer stretch with a few hurdles left for us to jump on the track! We will make it, and I am grateful that we are in the best possible position we could be at this stage of her treatment. Through it all, Evie continues to be amazing. Even on her very worst day during MAB, she tried to smile for Josh when he took a photo of her. She will say ‘thank you’ to me when I have finished giving her an injection, she will take oral medicine even though she doesn’t want to, and she asks if I can do her hair in a ponytail when it grows. I sure will, baby girl! Lying in bed the other morning, she said, ‘Mummy, when I am not sick can I go to the beach? And can I swim?’ I can’t wait for the day!!!!

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Arriving at Hospital with style!

Arriving at Hospital with style!

 

Sleeping with a strawberry shortcake doll she clutched the whole time.

Sleeping with a strawberry shortcake doll she clutched the whole time.

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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 7 comments
  • Jodie Boulenaz
    Reply

    I’m sitting here bawling..tears streaming down my face. You truly are the strongest mum (dad&family) I have ever heard of. Your strength is inspiring. Thank you for sharing your heart #prayforevie

  • Chris Corrigan
    Reply

    You are amazing and your princess is amazing too. Prayers sent your way xx

    • Kirsten Hanson
      Reply

      Hi Sarah n josh
      Thank u for sharing this extremely difficult journey. Evie is an amazing strong little girl. Every photo she has a smile on her face. Scott n I will continue to pray for her n your family believing that there will be victory n healing at the end. Luv Kirsten

  • Danielle
    Reply

    You are all so amazing! We are thinking of you all and praying for you every day! Xxx

  • Jenny Vique
    Reply

    My heart breaks for you Sarah, can not even try to imagine what your going through. I do know she is one lucky girl to have you as a mum. Hang in there!!!
    Always in my prays
    Love Jenny xx

  • Findy Wills
    Reply

    Keep fighting Sarah, Evie, Alicia and Josh! I can’t begin to imagine how tough this all is, but the courage you have all shown as a family is truly inspiring. Hang in there, it mustn’t be too much longer now.

    Praying for you,
    Findy xx

  • Stacie LaGreca
    Reply

    Sarah we love you dearly and your gorgeous family. sending you the BIGGEST hugs love and kisses and Praying continuously for your beautiful girl.

    xxx

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