A four week rollercoaster.

The next four weeks were extremely tough. The way Maisie had coped with her first cycle of chemotherapy had tricked me into believing that the next stage would go the same way, that my little fighter would power through once again. Oh how naïve I was. Every Tuesday when Maisie received her chemo she became tired, pale, refused to eat and anything she did manage she would vomit back up, she was irritable, not sleeping well and generally discontent. Over the weekends we could see her picking up again but Tuesdays always came around too quickly. Chemo was taking its toll on her and it was clear to see she had had enough.

exhausted

Wee Roxy staying close by her little sister

Our days became unpredictable and I was struggling to watch Maisie become weaker and suffer from the toxic chemicals that were consuming her little body. It is these hard days when I want to talk to people who are going through the same, who have that level of understanding for how truly difficult it is to watch your child going through the worst possible thing. I have met some very lovely families at the clinic, (its such a pity we had to meet under these circumstances though), and the support that we can give and receive from each other is something very special. However, I was starting to feel awkward about reaching out to them. I knew that in four weeks this horrendous stage of treatment would be over for us, that in four weeks we could begin to look forward and start living our 'new normal' life. I knew that we were one of the lucky ones. I know some people reading this might think that we are anything but lucky, but we are, things could have been so much worse. Maisie's tumour could have been inoperable, it could have been a more aggressive form of cancer, her treatment could have been longer, and even more gruelling but thankfully it wasn't. We were lucky compared to some and I was struggling to process how I felt about this. I was starting to feel like I was in no place to be devastated about what we were going through, that even though my poor girl was vomiting all around her and was not gaining weight to the point there was a threat of having to tube feed her, that I had no right to complain. This was almost over for us, it wasn't for others. Other little warriors, other strong and amazing parents had months, even years left of treatment, they had many more hurdles to jump over than we did. And while my heart was joyous for my little angel, it was breaking for all the other children who had made their way into my daily thoughts and prayers.

endless cuddle days on the sofa

Now I knew what I was doing, I was living under that cloud of comparison. I've spoken about it before, how comparing ourselves to others can lead to dwelling in their lives and forgetting to focus on our own. I was doing the same thing that I have noticed people doing with me since Maisie was diagnosed. People would say to me, 'Oh I have had a tough day...this happened and that happened...but its nothing compared to you....I shouldn't even be complaining.' And to be frank, this annoys me. It annoys me because we all have our difficulties in life, we all have problems and issues that we face on a daily basis and we all have different circumstances and ways of coping. So what may be trivial to someone could be debilitating for someone else. I don't believe that there is an hierarchy of pain, I don't believe we can say our level of sadness is more or less than someone else's, that what we are going through is any better or worse than someone else. We should all be entitled to feel the way we feel with no guilt or comparison.

Even eating was too much of a struggle

Deep down I knew all this. Deep down I knew that as a mother I had every right to be devastated for my child, I had every right to cry and be angry for the ten weeks of Maisie's life that have been stolen by cancer, to be down right pissed off that her perfect body has been cut open, is an organ lighter and is forever scarred as a constant reminder that her life was compromised. I have every right to feel regretful that I didn't notice sooner, that I spent months being frustrated, lost and overwhelmed with her endless tears. I also had every right to feel relief that this was nearly over for Maisie. To feel joyous that the light at the end of the tunnel was almost shining on her and all the hope for her future was there in sight. I had the right to feel proud of my courageous little fighter who had given everything she had, who would vomit up her dinner and still smile back at me, who lost all her hair and made it look beautiful, who would be exhausted and pale with bags under her eyes and still manage to dance and play until she physically couldn't go any longer. I had every right to sing my daughters praises, to brag about how amazingly brave she had been. Her journey may not have been as long as others but it did not take anything away from the fight that she had to face, the strength and resilience that her body had to demonstrate and the downright determination she had to give everyday to live. Every child going through this journey is an absolute superhero.

On Maisie's good days, which were few and far between over these four weeks, I felt it only fair to my little girl to grab them with both hands and make the most of them regardless of the chaos that was in my mind. She deserved to be made a fuss of, to do 'normal' things, to enjoy being a little baby and not just a cancer patient.

Over the four weeks my baby turned ten months old.

 

 

She experienced her first ever proper picnic at the foot of Slemish mountain and ate egg sandwiches, cheese triangles and watermelon. Even though we couldn't stay long because she wasn't allowed too much exposure to the sun, she didn't realise the quick visit and loved her time snacking and waving at everyone that passed us to climb the mountain. (We did take a pop up tent with us to keep her shaded from the sun but the less said about that tent the better...haha).

 

 

We managed a couple of days at the caravan too. It was midweek and very quiet with not too many people about so it was perfect for us to get out and about with her. We went for cycles on the beach with Maisie looking seriously cute in her tiny polka dot helmet, we had an ice-cream picnic for breakfast and we had evening strolls on the beach chasing the waves and giggling until our cheeks hurt.

 

 

Like I said, apart from those few good days, these four weeks were tough. Maisie was getting weaker and more sick with every week that passed and I honestly struggled watching her. People always say to me how strong I am and how well I am doing with all of this, but the honest truth is I'm not. My head and emotions are in constant chaos and I'm always just a second away from breaking down, but I have no choice but to just keep moving. To keep things going as normal as I can for Maisie. Its my little girl who is going through all the pain, its her tiny body that is tired and having to work harder than it should ever have to, its her that is doing all the fighting and she is doing it mostly with a smile on her face. The very least I can do is try and do the same. As her last day of chemo approached I was so relieved because I genuinely didn't think I could cope any longer. My baby had had enough and so had I.

 

 



Wendy.