I thought that getting through the day of the surgery was going to be the toughest part of that week. That once surgery was over there was no way I was ever going to feel that afraid, worried or heartbroken again. I thought that following surgery we could begin being hopeful and optimistic that everything was going to be OK. But I found the next few days really difficult and a lot of new fear and worries arose.
By the time Maisie made it back to the ward her face had retuned to its normal colour and she looked so beautiful. She seemed peaceful as she dozed in and out of sleep holding onto her bedtime bear. But as the evening continued she started to become unsettled. Unable to move due to the epidural and other various wires that were attached to her, the only part of her that had full freedom were her eyes. They darted around the room until they found mine and then they stilled. As she lay there so still, letting out weak moans with no expression on her face she looked trapped. She was helpless and vulnerable and there wasn't very much I could do to help her. It felt so unnatural to not pick her up and cuddle her, to give her the familiar comfort of my arms and embrace, and to let her know that everything was going to be OK even if I didn't believe it myself. I tried to smile at her, to make my eyes and face look calm and happy but I was worried.
As the night continued she was becoming increasingly unsettled and I noticed that her tummy, (which was no longer the full and round shape it had always been), looked a little swollen. I called the nurse over to have a look and she agreed her tummy was enlarged and hard and she also discovered a leak under the dressing of the epidural. Concerned, she made a few phone calls and arranged for the surgeon and anaesthetist to come and assess her first thing in the morning.
I didn't sleep much the rest of the night. I wanted to be awake and ready to hold Maisie's hand and stroke her soft, warm cheek whenever she woke to let her know she wasn't alone and didn't need to be afraid. As I watched her lying there still and lifeless my sleep deprived mind went into overdrive. I started to worry that her lack of movement was a result of the epidural doing exactly what I was afraid it would - I feared she was paralysed. I began to doubt the work of the surgeon, convincing myself that they didn't actually remove the tumour and that the swell of her tummy was it growing bigger. I started to worry that I was never going to see the Maisie that I knew again. The little girl with the bluest eyes and a face that lights up when she smiles. The little girl who bounces with excitement and body pops when she's happy. The little girl I knew seemed so far away and I so desperately wanted her back.
The anaesthetist and surgeon were with us very early that morning to assess her. They both assured me that Maisie was responding very well and that everything was progressing as it should. Her swollen tummy was a result of her organs being handled during surgery and they just needed time to settle down, and the epidural leak was slight and nothing to be concerned about. Following an ice cube test they also found sensation in all of Maisie's' limbs and extremities which eased my fear of paralysis. However, my mind was still running. I knew that until I could see a physical change in her, until I could see something that let me know that my little girl was still in there, I wouldn't rest easy.
After they left, my husband convinced me to go and have a shower and as I was coming back I could see numerous nurses and doctors by Maisie's bedside. I immediately went into panic mode but when I reached her bed everyone was calm. I was informed that Maisie had vomited everywhere and her bowels had also moved which were apparently all positive signs. Then when Maisie caught glimpse of me her two little arms stretched out in my direction for me to pick her up. I stood there heartbroken that I couldn't lift her, that I couldn't give her what she wanted, but I was also so relieved. My baby could move. My Maisie was coming back.
Over the next two hours she was still unsettled and her tummy was still getting bigger. It was decided that Maisie would be put on morphine and also have a tube inserted through her nose to drain out whatever was in her tummy. My husband and I were asked to stand outside the cubicle as they inserted the tube and all I could hear was her cry. It wasn't her normal cry though, it was weak and hoarse and hearing it was too much for me to bear. My husband held me close as I too began to cry. I wanted all this to end. I wanted all her pain to go away, I wanted all the wires, tubes and lines to disappear, I wanted to hold her and I wanted to take her home. I wanted it all to stop.
Once the tube was in the nurse, (who I must say was very lovely and took excellent care of Maisie), syringed out 150ml of air and some vomit. This seemed to do the trick because within an hour I got the sign I was so desperately needing. My husband and I got a smile and a little belly pop. Tears spontaneously fell from my eyes, I was relieved and joyous that I could see the Maisie we knew and loved. She was in there and she was trying so hard to fight.
During the night Maisie seemed much more comfortable, she slept more contently and her little tummy was starting to soften. She was running a temp of 37.9 so I had to keep a fan on her most of the night to ensure she stayed cool. If her temp was to go above 38.5 the epidural would have to come out due to risk of infection. Therefore it was another sleepless night for me but this time I was much more at ease. I could now see the life in Maisie starting to shine through and I knew her strong and fighting spirit was also kicking in. I did start to feel very silly though for having thought that she was paralysed and for thinking she still had the tumour, and I wondered was I always going to feel this way now? Was I always going to think worst case scenario? Was every fall going to result in broken limbs, was every rash going to be life threatening, and was every cold and flu going to be something more serious? Would I ever be able to see things in a logical way or was the fear of what has happened going to turn me into a crazy mummy who quite literally wraps her child in cotton wool?
The next morning Maisie was in good form and very settled so the epidural and catheter were removed. This was a massive step forward as it gave Maisie much more freedom and it also meant we were allowed a cuddle. I sat on the chair as the nurse sorted out the wires and handed her over to me and before she was even in my arms I was crying. It had been 51 hours since I last held my baby, 51 hours that my arms were not able to do what they were made for, 51 hours where I couldn't comfort my baby when she needed it the most. When I held her I could feel the difference in her. I could feel the physical change in the weight of her body from the lack of tumour and the kidney that cancer stole from her. But as she rested her face against mine I could also feel her eyelashes brush against my cheek, and in that moment I was so thankful that cancer hadn't managed to steal those too. It was the sweetest most gentle cuddle I have ever had with her and my heart was bursting with pride and love. As I held her close, breathed her in and felt the warmth of her body I began to feel a surge of strength. It felt like Maisie was refuelling my tank and sharing her bravery and courage with me. She is definitely the fighter, the one that keeps us all going, the one who makes us believe that these battles can be won.
From this Maisie went from strength to strength. She started taking some bottle feeds, eating a little pureed fruit, got the tube removed from her nose and was sitting up on her own again. By Sunday, (5days post surgery), all her drips, wires and lines were removed and we got her dressed for the first time. She was a tad out of sorts, slept most of the day and still needed oral morphine to keep her settled but she was eating solid meals and doing everything the doctors wanted to see.
Just before we left though, our consultant came to see us and he brought us back down to earth with a bang. He told us he would be expecting to see us the following morning in the clinic to restart Maisie's chemotherapy. I knew it wasn't his fault and I knew that her treatment plan wasn't over after surgery, that it was just another hurdle, but it was a kick in the teeth. Only 6 days ago Maisie surrendered her little body to have major surgery in a bid to get rid of her tumour. She fought hard and did everything that was expected of her and more, and before she had even been given the chance to fully recover she was being asked to give her body back over into the hands of cancer, to get it pumped back up again with more toxic chemicals. It was cruel and unfair. How much more was she going to have to endure and suffer? How much more was expected of her? How much more of my little girl did cancer want to take?
Going home that afternoon I was determined not to let this distract me from the pride that I felt for being a mummy to a little superhero. Instead I focused on the fact that my baby had just overcome major surgery and was showing us all how to deal with the difficulties we face in life, whatever they may be - with fierce courage and determination. And I knew that in the same way she had won the battle this week, she would wake the next morning and win again.
Wendy.
By the time Maisie made it back to the ward her face had retuned to its normal colour and she looked so beautiful. She seemed peaceful as she dozed in and out of sleep holding onto her bedtime bear. But as the evening continued she started to become unsettled. Unable to move due to the epidural and other various wires that were attached to her, the only part of her that had full freedom were her eyes. They darted around the room until they found mine and then they stilled. As she lay there so still, letting out weak moans with no expression on her face she looked trapped. She was helpless and vulnerable and there wasn't very much I could do to help her. It felt so unnatural to not pick her up and cuddle her, to give her the familiar comfort of my arms and embrace, and to let her know that everything was going to be OK even if I didn't believe it myself. I tried to smile at her, to make my eyes and face look calm and happy but I was worried.
As the night continued she was becoming increasingly unsettled and I noticed that her tummy, (which was no longer the full and round shape it had always been), looked a little swollen. I called the nurse over to have a look and she agreed her tummy was enlarged and hard and she also discovered a leak under the dressing of the epidural. Concerned, she made a few phone calls and arranged for the surgeon and anaesthetist to come and assess her first thing in the morning.
I didn't sleep much the rest of the night. I wanted to be awake and ready to hold Maisie's hand and stroke her soft, warm cheek whenever she woke to let her know she wasn't alone and didn't need to be afraid. As I watched her lying there still and lifeless my sleep deprived mind went into overdrive. I started to worry that her lack of movement was a result of the epidural doing exactly what I was afraid it would - I feared she was paralysed. I began to doubt the work of the surgeon, convincing myself that they didn't actually remove the tumour and that the swell of her tummy was it growing bigger. I started to worry that I was never going to see the Maisie that I knew again. The little girl with the bluest eyes and a face that lights up when she smiles. The little girl who bounces with excitement and body pops when she's happy. The little girl I knew seemed so far away and I so desperately wanted her back.
The anaesthetist and surgeon were with us very early that morning to assess her. They both assured me that Maisie was responding very well and that everything was progressing as it should. Her swollen tummy was a result of her organs being handled during surgery and they just needed time to settle down, and the epidural leak was slight and nothing to be concerned about. Following an ice cube test they also found sensation in all of Maisie's' limbs and extremities which eased my fear of paralysis. However, my mind was still running. I knew that until I could see a physical change in her, until I could see something that let me know that my little girl was still in there, I wouldn't rest easy.
After they left, my husband convinced me to go and have a shower and as I was coming back I could see numerous nurses and doctors by Maisie's bedside. I immediately went into panic mode but when I reached her bed everyone was calm. I was informed that Maisie had vomited everywhere and her bowels had also moved which were apparently all positive signs. Then when Maisie caught glimpse of me her two little arms stretched out in my direction for me to pick her up. I stood there heartbroken that I couldn't lift her, that I couldn't give her what she wanted, but I was also so relieved. My baby could move. My Maisie was coming back.
Over the next two hours she was still unsettled and her tummy was still getting bigger. It was decided that Maisie would be put on morphine and also have a tube inserted through her nose to drain out whatever was in her tummy. My husband and I were asked to stand outside the cubicle as they inserted the tube and all I could hear was her cry. It wasn't her normal cry though, it was weak and hoarse and hearing it was too much for me to bear. My husband held me close as I too began to cry. I wanted all this to end. I wanted all her pain to go away, I wanted all the wires, tubes and lines to disappear, I wanted to hold her and I wanted to take her home. I wanted it all to stop.
Once the tube was in the nurse, (who I must say was very lovely and took excellent care of Maisie), syringed out 150ml of air and some vomit. This seemed to do the trick because within an hour I got the sign I was so desperately needing. My husband and I got a smile and a little belly pop. Tears spontaneously fell from my eyes, I was relieved and joyous that I could see the Maisie we knew and loved. She was in there and she was trying so hard to fight.
During the night Maisie seemed much more comfortable, she slept more contently and her little tummy was starting to soften. She was running a temp of 37.9 so I had to keep a fan on her most of the night to ensure she stayed cool. If her temp was to go above 38.5 the epidural would have to come out due to risk of infection. Therefore it was another sleepless night for me but this time I was much more at ease. I could now see the life in Maisie starting to shine through and I knew her strong and fighting spirit was also kicking in. I did start to feel very silly though for having thought that she was paralysed and for thinking she still had the tumour, and I wondered was I always going to feel this way now? Was I always going to think worst case scenario? Was every fall going to result in broken limbs, was every rash going to be life threatening, and was every cold and flu going to be something more serious? Would I ever be able to see things in a logical way or was the fear of what has happened going to turn me into a crazy mummy who quite literally wraps her child in cotton wool?
The next morning Maisie was in good form and very settled so the epidural and catheter were removed. This was a massive step forward as it gave Maisie much more freedom and it also meant we were allowed a cuddle. I sat on the chair as the nurse sorted out the wires and handed her over to me and before she was even in my arms I was crying. It had been 51 hours since I last held my baby, 51 hours that my arms were not able to do what they were made for, 51 hours where I couldn't comfort my baby when she needed it the most. When I held her I could feel the difference in her. I could feel the physical change in the weight of her body from the lack of tumour and the kidney that cancer stole from her. But as she rested her face against mine I could also feel her eyelashes brush against my cheek, and in that moment I was so thankful that cancer hadn't managed to steal those too. It was the sweetest most gentle cuddle I have ever had with her and my heart was bursting with pride and love. As I held her close, breathed her in and felt the warmth of her body I began to feel a surge of strength. It felt like Maisie was refuelling my tank and sharing her bravery and courage with me. She is definitely the fighter, the one that keeps us all going, the one who makes us believe that these battles can be won.
From this Maisie went from strength to strength. She started taking some bottle feeds, eating a little pureed fruit, got the tube removed from her nose and was sitting up on her own again. By Sunday, (5days post surgery), all her drips, wires and lines were removed and we got her dressed for the first time. She was a tad out of sorts, slept most of the day and still needed oral morphine to keep her settled but she was eating solid meals and doing everything the doctors wanted to see.
First thing Monday morning the surgeon came around to assess her and he gave me the best news - Maisie was ready to go home. After 6 long, emotional and draining nights in hospital this was music to my ears. We could finally take her home to her own cot and her own home comforts and put this week behind us. We could now move forward. I packed up our suitcases in no time at all and then we sat and waited for the discharge papers, all smiling and joyous.
Just before we left though, our consultant came to see us and he brought us back down to earth with a bang. He told us he would be expecting to see us the following morning in the clinic to restart Maisie's chemotherapy. I knew it wasn't his fault and I knew that her treatment plan wasn't over after surgery, that it was just another hurdle, but it was a kick in the teeth. Only 6 days ago Maisie surrendered her little body to have major surgery in a bid to get rid of her tumour. She fought hard and did everything that was expected of her and more, and before she had even been given the chance to fully recover she was being asked to give her body back over into the hands of cancer, to get it pumped back up again with more toxic chemicals. It was cruel and unfair. How much more was she going to have to endure and suffer? How much more was expected of her? How much more of my little girl did cancer want to take?
Going home that afternoon I was determined not to let this distract me from the pride that I felt for being a mummy to a little superhero. Instead I focused on the fact that my baby had just overcome major surgery and was showing us all how to deal with the difficulties we face in life, whatever they may be - with fierce courage and determination. And I knew that in the same way she had won the battle this week, she would wake the next morning and win again.
Wendy.
Thanks for sharing your journey. Can't begin to imagine what you have all been through x
ReplyDeleteI just hope that by sharing maisies story it will bring some awareness to childhood cancer and maybe help another family going through something similar. thank you for reading along x
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