At 4.AM the next morning after a few hours of restless and uncomfortable sleep, I woke to the unfamiliar sounds of the hospital ward. I looked across and saw my beautiful little girl fast asleep with her mouth open and her wee legs hanging through the gaps in the cot. For a second it actually made me giggle and then the realisation of why she was lying there came back. I then felt guilty for having a giggle, I felt guilty for not being able to protect her from this, and I felt guilty that I hadn't noticed. What kind of mother was I?
The guilt swamped my body in an unbearable physical weight and unable to move by it, I lay there crying silently to myself until my head felt like it was going to burst and my throat was sore from trying to contain my sobs. I lifted my phone and frantically scrolled through every picture I had of Maisie desperately looking to see if I could find the lump in any of them. Even though we had been informed that with the type of tumour they suspected Maisie to have that it is extremely common for the lump to just suddenly appear, I couldn't believe it. I couldn't believe that my baby had a tumour, that it just suddenly appeared, that she was fine and healthy one day and just wasn't the next. Surely it doesn't happen that way.
It had just turned 6.AM and I was about to torture myself by scrolling through my photos for the fourth time when Maisie woke. Almost every morning when she wakes she smiles the biggest smiles and it melts my heart. This morning, even under the circumstances, it was no different. I felt so proud of my little bear. I lifted her out, fed her a bottle and then I remembered that it would be last thing to pass her lips until the late afternoon. The plan for that day was for Maisie to have an MRI scan in order to get a better image of the tumour, to see where it was coming from and to get closer to confirming their suspicions of a Wilms tumour.
Maisie might be a tiny little poppet but she loves her food and having to fast her all day was worrying. I just thought if she was anything like me when I'm hungry then we could be in for a rough couple of hours. But, just like she has done through this entire process, she took it all in her stride. We took it in turns to walk her up and down the corridors and the sight of the hanging butterflies and bumble bees, the pictures of the farm animals and the little fairy land where all your worries were taken away, was enough to keep Maisie distracted from her empty tummy.
After 9 hours of fasting it was finally time to go for the MRI. I was allowed to nurse Maisie on my lap while they administered the anesthetic and within 3 seconds her entire little body had gone limp and she lay heavily in my arms. I was able to kiss her very quickly on the cheek before I was taken back out of the room. To see her lying there so small, vulnerable and not in control of her own body made my heart break a little bit more.
It was an anxious wait and I felt every minute ticking by. Cbeebies being played on the TV in the waiting area was definitely not enough to distract my attention from what was happening to my baby beyond the double doors. Unable to sit still I started pacing the floor of the reception area hoping it would pass the time. It must have worked because not long after we were being called through to see our little girl. As I approached her I got this strange feeling in the pit of my stomach and I thought that cannot be Maisie. Holding her, I saw that her skin was so pale it was almost see through, her eyes were red rimmed and still rolling in her head, she was crying with a hoarse growl and still disorientated she didn't know who I was and she seemed so scared and unsure. That image I have of her is not something I will forget easily. As we walked back to the ward I held her close to my chest and I thought how am I going to to get her through this? We were only on our second day and it was just the beginning of getting a diagnoses, never mind actually dealing with whatever was inside her. My heart was breaking little by little, I was exhausted, drained and hugely overwhelmed.
Once we were back on the ward she was still crying but instantly stopped when her daddy showed her her feeding spoon. She ate every bite of her fruit and yogurt and actually wanted some dinner afterwards too. She was coming round very well and I was just starting to relax a little, when out of nowhere her wee face and down the tops of both her arms turned bright red. I started to panic thinking she was having an allergic reaction and so we called the nurse to have a look. After calling upon a doctor we were told she had developed an anesthetic flush which is apparently quite common after having anesthetic for the first time and it was nothing to worry about. We just had to strip her down to her nappy and lay her in front of the fan to cool her down and after an hour she returned to her normal colour and was perfectly fine. We got her dressed for bed and down she went to sleep as if today had been no different to any other.
After everyone had left and it was just me and Maisie, I lay my head down and thought I have made it through. I let all the fear, anger, worry and stress of the day pour out because I knew I had to wake the next morning and do it all over again.
Wendy.
The guilt swamped my body in an unbearable physical weight and unable to move by it, I lay there crying silently to myself until my head felt like it was going to burst and my throat was sore from trying to contain my sobs. I lifted my phone and frantically scrolled through every picture I had of Maisie desperately looking to see if I could find the lump in any of them. Even though we had been informed that with the type of tumour they suspected Maisie to have that it is extremely common for the lump to just suddenly appear, I couldn't believe it. I couldn't believe that my baby had a tumour, that it just suddenly appeared, that she was fine and healthy one day and just wasn't the next. Surely it doesn't happen that way.
It had just turned 6.AM and I was about to torture myself by scrolling through my photos for the fourth time when Maisie woke. Almost every morning when she wakes she smiles the biggest smiles and it melts my heart. This morning, even under the circumstances, it was no different. I felt so proud of my little bear. I lifted her out, fed her a bottle and then I remembered that it would be last thing to pass her lips until the late afternoon. The plan for that day was for Maisie to have an MRI scan in order to get a better image of the tumour, to see where it was coming from and to get closer to confirming their suspicions of a Wilms tumour.
After 9 hours of fasting it was finally time to go for the MRI. I was allowed to nurse Maisie on my lap while they administered the anesthetic and within 3 seconds her entire little body had gone limp and she lay heavily in my arms. I was able to kiss her very quickly on the cheek before I was taken back out of the room. To see her lying there so small, vulnerable and not in control of her own body made my heart break a little bit more.
It was an anxious wait and I felt every minute ticking by. Cbeebies being played on the TV in the waiting area was definitely not enough to distract my attention from what was happening to my baby beyond the double doors. Unable to sit still I started pacing the floor of the reception area hoping it would pass the time. It must have worked because not long after we were being called through to see our little girl. As I approached her I got this strange feeling in the pit of my stomach and I thought that cannot be Maisie. Holding her, I saw that her skin was so pale it was almost see through, her eyes were red rimmed and still rolling in her head, she was crying with a hoarse growl and still disorientated she didn't know who I was and she seemed so scared and unsure. That image I have of her is not something I will forget easily. As we walked back to the ward I held her close to my chest and I thought how am I going to to get her through this? We were only on our second day and it was just the beginning of getting a diagnoses, never mind actually dealing with whatever was inside her. My heart was breaking little by little, I was exhausted, drained and hugely overwhelmed.
Once we were back on the ward she was still crying but instantly stopped when her daddy showed her her feeding spoon. She ate every bite of her fruit and yogurt and actually wanted some dinner afterwards too. She was coming round very well and I was just starting to relax a little, when out of nowhere her wee face and down the tops of both her arms turned bright red. I started to panic thinking she was having an allergic reaction and so we called the nurse to have a look. After calling upon a doctor we were told she had developed an anesthetic flush which is apparently quite common after having anesthetic for the first time and it was nothing to worry about. We just had to strip her down to her nappy and lay her in front of the fan to cool her down and after an hour she returned to her normal colour and was perfectly fine. We got her dressed for bed and down she went to sleep as if today had been no different to any other.
After everyone had left and it was just me and Maisie, I lay my head down and thought I have made it through. I let all the fear, anger, worry and stress of the day pour out because I knew I had to wake the next morning and do it all over again.
Wendy.
My dear Wendy and Keith, My heart breaks for you both and for your little Maisie May. You are in our prayers and in my friends prayers and most in prayers of my friends that have gone through childhood tumors or childhood cancer with their own children. It is a group you surely do not want to join, and I am so sorry you are part of it. We will keep praying for you here and sending most positive thoughts. (I know your story as my sweet baby girl (well she's 23 yrs) left home to work 3 hrs away and has had the pleasure of working with Keith this last year.) She keeps me updated, but I wanted you to know how many many people around the world are praying for your little miss and sending tons of positive energy to her quick recovery. Mary
ReplyDeleteThank you so much Mary for your thoughts and prayers, it means so much to Keith and I that so many people are thinking about our little girl. She is everything to us. I'm glad your daughter finds it a pleasure to work with Keith haha and we actually received a very thoughtful gift from their team which really touched our hearts so you can thank your lovely daughter from us. X
DeletePraying for you and following along in your blog, from the US. My heart goes out to you in this time of uncertainty. The Lord will comfort you and I'm praying He will bring healing to dear Maisie and be with her doctors as they care for her. Hugs, Rachel Gardner.
ReplyDeleteThank you Rachel for your prayers,it means so much to Keith and I. X
DeleteKeep strong. Our thoughts are with you. Davina and Paul xxc
ReplyDelete