Driving to Belfast the next morning to start a new round of chemotherapy was a heart breaking reminder that this nightmare was not over. That even after all the challenges and battles Maisie has fought and won so far, the cancer war was still going on. Today was not only a trip for chemotherapy either, today was the day we were expecting to hear the pathology report and the anxiety could be felt amongst us all. Apart from Maisie who was still smiling.
Up until now we had no indicator as to what stage Maisie's cancer was at and we only had a vague idea of the type of cancer cells that were present thanks to the biopsy. So until the tumour was removed and went to the pathologists we had no solid idea of what type of treatment plan Maisie was going to have to endure following surgery. The very best outcome we could hear today was that the tumour would be completely dead of all cancer cells but that was a tad optimistic and a bit too much to ask for. So with a realistic hope we were aiming for the tumour to be stage one with a low or intermediate risk, meaning only 4 weeks of chemotherapy treatment using the same two drugs that were previously used. All fingers and toes were crossed for only 4 more weeks of treatment.
I usually look forward to going into the consultants office to have a talk about Maisie, because each time I do I leave feeling like everything is going to be OK. He makes us feel at ease and gives us the confidence that Maisie is in good hands. But today I was tense and I could feel my body stiffen as I went in. I looked at him knowing that his words to us today were going to be significant, that they were going to be of a huge impact upon Maisie's next battle. It was a difference of facing 4 weeks treatment and 7 months, a difference of using low intensity chemo and having new drugs which would bring a higher risk of infection and a bigger impact upon her body long term. These results held so much power and were going to set the bar for how long and hard Maisie was going to have to fight to win. It was a tense moment. What I wasn't prepared for though was to hear that our consultant had no results to give us, that the pathology report hadn't yet come back. As I sat there I could feel the frustration in me build. Again, I knew that this wasn't the consultants fault and that the report would take as long as it took, but I needed to know. I needed to know what was ahead of us because the longer we waited the more I would worry. Our consultant must have read this on my face and suggested that although he doesn't like to have these conversations over the phone he would ring us as soon as he heard anything. He knew we were anxious and didn't want us to have to wait another week to find out. So after Maisie received her chemotherapy I left frustrated and drained with my phone clutched tightly in my hand.
It was that same evening after dinner when Maisie and I were reading stories and playing that my husband appeared at the doorway with the phone to his ear. He said, 'I will put you on speaker' and I knew this was it. I lifted Maisie up into my arms and held her close. I've got you baby girl, whatever he says, I've got you. We will do this.
The consultant quickly informed us that the report had come back with the news we were hoping for. The local pathologists had concluded stage one cancer with intermediate risk. My husband and I looked at each other and we were both grinning from ear to ear, I couldn't quite believe what we were hearing. He continued to say that although the percentage of the cancer cell blastema was on the right side of the border line between intermediate and high risk, it was very close so it was something we needed to be aware of. Routinely, and falling within the standard practice of care for paediatric renal tumours, the tumour was also being sent to a team of specially trained pathologists in Cardiff who would be taking another look and again would report their findings. This was to take several weeks and our consultant said that while their findings rarely come back any different they do value the second opinion very highly. He explained that he was indeed very hopeful that the level of blastema wouldn't change but wanted us to be aware of this information in the small chance that it would. If it was to move into the high risk category then the treatment plan would be long and would involve several new drugs which would have a bigger impact upon Maisie's body long term. But for now, our consultant was extremely happy to say that based on this report her treatment was to take the approach of four weeks chemotherapy using the same two drugs she had previously received. And with one dose already given we only had three more to go before this hurdle was over.
Every night before bed I sing a song to Maisie that has the words 'tomorrow is just a dream away', but since she was diagnosed a part of me always feared that there wouldn't be a tomorrow. This is painful to say and to share but it's true and it's a reality of living with a cancer diagnoses. But as I put Maisie down to bed that night I could finally see the hope of tomorrow. There was now light at the end of the dark and scary tunnel that we were in.
Wendy.
I usually look forward to going into the consultants office to have a talk about Maisie, because each time I do I leave feeling like everything is going to be OK. He makes us feel at ease and gives us the confidence that Maisie is in good hands. But today I was tense and I could feel my body stiffen as I went in. I looked at him knowing that his words to us today were going to be significant, that they were going to be of a huge impact upon Maisie's next battle. It was a difference of facing 4 weeks treatment and 7 months, a difference of using low intensity chemo and having new drugs which would bring a higher risk of infection and a bigger impact upon her body long term. These results held so much power and were going to set the bar for how long and hard Maisie was going to have to fight to win. It was a tense moment. What I wasn't prepared for though was to hear that our consultant had no results to give us, that the pathology report hadn't yet come back. As I sat there I could feel the frustration in me build. Again, I knew that this wasn't the consultants fault and that the report would take as long as it took, but I needed to know. I needed to know what was ahead of us because the longer we waited the more I would worry. Our consultant must have read this on my face and suggested that although he doesn't like to have these conversations over the phone he would ring us as soon as he heard anything. He knew we were anxious and didn't want us to have to wait another week to find out. So after Maisie received her chemotherapy I left frustrated and drained with my phone clutched tightly in my hand.
It was that same evening after dinner when Maisie and I were reading stories and playing that my husband appeared at the doorway with the phone to his ear. He said, 'I will put you on speaker' and I knew this was it. I lifted Maisie up into my arms and held her close. I've got you baby girl, whatever he says, I've got you. We will do this.
The consultant quickly informed us that the report had come back with the news we were hoping for. The local pathologists had concluded stage one cancer with intermediate risk. My husband and I looked at each other and we were both grinning from ear to ear, I couldn't quite believe what we were hearing. He continued to say that although the percentage of the cancer cell blastema was on the right side of the border line between intermediate and high risk, it was very close so it was something we needed to be aware of. Routinely, and falling within the standard practice of care for paediatric renal tumours, the tumour was also being sent to a team of specially trained pathologists in Cardiff who would be taking another look and again would report their findings. This was to take several weeks and our consultant said that while their findings rarely come back any different they do value the second opinion very highly. He explained that he was indeed very hopeful that the level of blastema wouldn't change but wanted us to be aware of this information in the small chance that it would. If it was to move into the high risk category then the treatment plan would be long and would involve several new drugs which would have a bigger impact upon Maisie's body long term. But for now, our consultant was extremely happy to say that based on this report her treatment was to take the approach of four weeks chemotherapy using the same two drugs she had previously received. And with one dose already given we only had three more to go before this hurdle was over.
Every night before bed I sing a song to Maisie that has the words 'tomorrow is just a dream away', but since she was diagnosed a part of me always feared that there wouldn't be a tomorrow. This is painful to say and to share but it's true and it's a reality of living with a cancer diagnoses. But as I put Maisie down to bed that night I could finally see the hope of tomorrow. There was now light at the end of the dark and scary tunnel that we were in.
The following morning when we woke the sun was shining so we decided to go out and enjoy it. We packed up our bikes and headed out for a day just the three of us. As we cycled around beautiful gardens with little Maisie sitting in her trailer waving to people like the princess she is, I realised that I was breathing with ease for the first time in over a month. I was appreciating the sun through the trees, the smell of the freshly cut grass and I was fully enjoying the moment with my family. That first day when we were told to 'prepare for the worst' I thought that we would never get through this, I couldn't see any light or any hope. But here we were. My little girl had pulled us through these long and dark days to the point where there was now a finish line in sight. My little girl is a real life superhero and amazes me everyday with her strength, resilience and her continuous smile. I knew that we still had three tough weeks of treatment ahead but if anyone could fight their way through it, it was Maisie May.
Wendy.
Thanks for sharing, can't begin to imagine how a parent feels in this situation....hopefully writing in down and sharing will help others on this journey too x
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