Raising Maisie May

With Maisie now receiving her chemotherapy we had to adopt a new way of life. A life where sterilising every surface, every toy, and every inch of the house became a daily ritual. A life where we could no longer go shopping, go for coffee, go for play dates or attend baby classes, go swimming or play in the park. A life where visitors were restricted and only allowed in if they had no coughs or colds and they used the hand sanitisers that we had installed in the house. This may sound a tad over protective to some but with a suppressed immune system the risk of infection is seriously high and could hinder her treatment. We knew that we couldn't take her cancer away and we couldn't change anything for her, so the best we could do was to protect her and keep her free from infection, no matter what that meant. Over the next few mornings when I woke my heart was heavy with worry about how Maisie would be. Worried that her little face would be lacking all colour, her beautiful ging...

Less than 24 hours later, when the results from the biopsy barely had a chance to settle, we received a phone call from our consultant. He explained that he had a free slot that afternoon to discuss Maisie's treatment plan in more detail and to also begin chemotherapy if we were ready. Ready? How could we be ready? I had no idea what we needed to be ready for. I had no idea what chemotherapy meant for Maisie, what it would entail, how it would affect her. I had so many questions, some that I was sure our consultant could answer but so many more that I knew he couldn't. But, whether we were ready or not we knew that we needed to go and begin whatever process was ahead of us. We knew that it was Maisie's only option at this point. When we arrived at the clinic I began to feel so overwhelmed and I felt like we shouldn't be there, that we had no need to be in a place where chemotherapy and tumours where the hot topic of conversation. As we waited to be seen by the c...

Waiting.....  Nobody really likes it do they? Waiting for a bus, waiting in a queue, waiting for exam results, waiting for your husband to empty the dishwasher; they all suck right?  Well waiting for the biopsy results of your 8 month old baby's tumour is a whole different ball game. After 5 days of waiting, where one minute felt like an hour, an hour felt like a day, and a day felt like forever, my head was in overdrive heading to Belfast to hear what the consultant had to say. All that waiting had made every possible scenario and outcome to become blurred and overthought. I couldn't see past this. I couldn't see any light. I couldn't see a future. The word cancer does that to you. All that my eyes, my head and my heart could see and feel was pain, fear and uncertainty. The smile of being blissfully unaware of what was ahead. On the drive up I kept saying to myself please let it be benign. If its not, and it is cancer, please let it be a Wilms. Isn't tha...

At 4.AM on Friday morning Maisie woke hungry. I gave her a bottle which she quickly guzzled and she drifted back off to sleep. I sat watching her for a while; her eyes shut, her mouth open, her little chest rising and falling with every breath, so peaceful and perfect. But, there on her neck, red and starting to bruise, were the small but significant marks to remind me that everything wasn't perfect. Our lives were changing and being taken in a new direction, one where we were uncertain of the final destination. And just when I thought I could not possibly cry anymore, the tears started coming, fear being released with every drop that fell from my lashes. The surgeon came around early that morning to see how Maisie managed through the night. He said that if we were feeling up to it we could go home over the weekend as we waited for the results of the biopsy. A part of me wanted to lift Maisie from the cot right then and run and not look back but the other part of me was scared....

The next morning I purposely woke Maisie at 5.AM and again at 7.AM to give her a bottle as she was to fast again until the afternoon. It was set to be another big day for her, with another anesthetic but this time she would have to go to theater. The surgeons today were inserting a Broviac line which would go in through her neck, be tunneled under the skin and come out through her chest in order to be used for "further treatment". (At the time of insertion we were unaware that the further treatment they were referring to was chemotherapy). Following this a biopsy of the renal mass on her left abdomen would be carried out and a CT scan. What a day for my little bear. At 8.AM the surgeon arrived to discuss the process of the day and to talk me through the procedures. I couldn't quite follow everything he was saying but key words were ringing loudly in my head; incision scars, chances of bleeding, injury to lung, bladder, bowel, line can be blocked, pulled out, air traps, ...

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 Maisi...

Every morning when I lift Maisie from her cot to change her nappy, I excitedly pull open the buttons of her baby-grow to free her warm little legs. I kiss her feet and tickle her thighs to see the smiles appear and the dimple creep onto her cheek. But this particular morning I wasn't so eager. I didn't want to see her beautiful naked skin stretched out in an odd shape on her side, covering the thing that was making itself a home inside her body. When I did see it that morning it seemed larger and more prominent and all those thoughts I had been trying to keep at bay came crashing to the forefront of my mind. My instinct, (us mothers definitely have one), was telling me that this is very serious and more sinister than what we thought. I tried to keep myself busy while I waited for the doctors surgery to open so I decided to bath Maisie. When I looked at her happy little face and the way she was splashing so care free in the water and blowing raspberries, it seemed so surreal t...