Those Weren't Just Spots On My Baby Girl's Head - The M Word

Those Weren’t Just Spots On My Baby Girl’s Head

I Thought I Was Invincible Until The Floods Of Tears Started
June 7, 2019
Living With…Endometriosis
June 7, 2019

Sick Bubba, Strong Mamma.

Yes I know its cliché but your life really does change when you become a Mamma. Mine sure did. In a way I felt like a mother the second that frozen embryo was cemented in my womb and began to grow. A baby, all of my own. At last! My husband and I had tried for some time to get pregnant, we were desperate for a baby and for a while it seemed like we would never fall pregnant.

Fertility issues on both sides meant we were destined for some help. We were on the infertility train and spent many days obsessing over ovulation times, getting checks done, going to appointments and having pretty invasive procedures done in order to get my body ready to accept a baby. I know probably many of you can relate. Taking tons of tablets, taking injections, getting bloods done and some pretty invasive procedures done. And waiting. Oh the waiting! That above all else was the most difficult. But we got there.

After one failed embryo transfer our second little frozen embryo settled in snug and grew into my beautiful perfect daughter Chloe. She is one year old now and growing strong.

At the time struggling with infertility was the biggest hardship I had ever encountered.

Not being able to conceive and watching what felt like everybody else having babies was So. Freaking. Hard.

And hearing a preggo moan about carrying a child nearly sent me round the bend.

Looking back I can appreciate everyone has their own struggles and demons to fight but back then I was more than ready to throttle a lady or two for this.

No one can understand the pain of being unable to have a child of their own unless they have gone on a similar journey.

And I take my hat off to each and every one of you that has felt the sting of infertility. You are stronger for it, trust me. And so growing a baby was one of the happier times of my life. I seriously basked in having a huge tummy, in buying maternity clothes, and getting ready for my girl. Sure I was wrecked but being tired and a bit sick was so worth it. (And lucky for me my morning sickness was nothing compared to being sick on fertility meds.) The first three months of Chloe’s life were the happiest in my life. She was the perfect, most beautiful and wonderful newborn. And I am not just saying that as a long-time-coming Mamma, really! My husband Paul felt the same.

We spent our days quietly, falling into a routine of feeding on demand, walks, coffee group catch ups, and family time.

Life was so incredibly perfect. Then I noticed some purple spots on my girl’s head.

The next day some more showed up on her body and I took her to my G.P thinking she had a virus. Next thing you know we are in hospital getting blood counts checked and being told she may have Leukaemia. Purples spots on her head was the only thing that prompted such a huge discovery. Suddenly living in Auckland , New Zealand at the other side of the world to your whole support system seemed like a terrible decision.

The world stops when you are told your child is ill with a life threatening illness. It feels like your heart stops too.

How could this happen? Chloe was a healthy happy little baby and seemed so very strong. It broke our hearts. Surely it could not be true? But it was. She spent the next five months in Auckland’s Children’s Hospital where Chloe was treated for Acute Myeloid Leukaemia translocative 8-16, a pretty rare type of AML which very rarely occurs in babies. In fact Chloe is only the second person in 10 years to be treated with this type of leukaemia here in Auckland, NZ.

She had two cycles of chemo starting at three months of age and also a Bone Marrow Transplant which included yup, you guessed it, even more chemo. She reacted so very well to the treatment which was amazing and unsuspected as we had been told her chances of surviving were slim. She was in remission after cycle 1. The first two cycles were quite hard on her little system and she was very sick. Her gut was damaged and is just now recovered after treatment. Her Bone Marrow Transplant was a success and after suffering Graft versus Host Disease in her damaged gut we were discharged just days after Christmas Day 2017.

Currently she has mild Graft versus Host Disease of the skin and is taking meds to combat this. She has little immunity so we are living a quiet life isolated from others, not taking her to anywhere with people,i.e. the grocery store. But we are getting out and about and going for lots of walks. And so yes my life has changed as a Mamma. I worked hard to get here. I fought my own body for a baby, dealt with PCOS and infertility, I grew her and kept her safe in my tummy and went through Gestational Diabetes and Colestasis in pregnancy. I had an induced labour and ended up giving birth with no epidural and assisted with forceps. I had the most incredibly life changing 3 months of bliss with my baby daughter and my husband.

Then our world ended as we knew it. And a new harsher reality kicked in. We all fought for our lives. And we go on. And still we fight.

Chloe is in remission but we live in fear of relapse especially during the first year of remission as her cancer is not treatable during this time. Chloe is my world, my heart and she most certainly is my warrior. I believe in staying as positive as possible in a difficult situation and confronting things as they come and not fretting before hand about something that may never eventuate. I want to pass this on to my baby girl. My life has changed. I am tired, I am scared, and I am not sure what the future holds.

But you know what? I am the happiest I have ever been because I have my girl. And I will never stop fighting for my child. I want to give her the best life possible with the best health. I want my child to know love and joy, safety and confidence. I want her to know what colour the sky is, to climb trees and even eat sand (when she is older and healthier!) if she wants to. I want to watch her grow, to be there when she needs a cuddle or kind words, to give her guidance and to be a rock when she needs it. And I know all of you Mammas will feel the same about your own little warriors. So that’s it. I have hope for my families future. I have the fierce love all mothers have for their children. My life has changed. I am a Mamma to an amazing strong little girl. And I love it