A difficult Diagnosis

My daughter Chloe was diagnosed with Acute Myeloid Leukaemia (8-16) on the day she turned three months old. Up to that point was no hint or symtpom of such an insidious and horrible disease. Chloe was such a happy and very healthy little girl who had what seemed to be a mild temperature the day before her diagnosis.
The next morning I phoned my husband Paul to ask if he had noticed two rather small hard purple lumps on the side of our girl’s head. I mean small, they were pretty minor and had me as a first time Mamma wondering if it was simply something that every baby got, or if it was a reaction to something.
They didn’t go away and so in a few hours I booked in with my doctors for an appointment. You know I felt kind of silly thinking I was probably over reacting and that the doctor would smile good naturedly and send me and my little darling on our way.
But that didn’t happen.
The doctor really could not tell what the lumps were and was a little sketchy on what they might be. I wonder if she had seen something similar before and was leery of saying anything about Cancer to me. She referred me to Waitekere Hospital to get Chloe checked. “Just to be on the safe side”.
My mind went into overdrive. What was wrong with my baby? Why did the doctor think we needed something so drastic as to go to hospital. I freaked out in the car, I mean blubbering, worrying, and calling Paul to come with us. I guess on top of being a first time Momma, Chloe is an IVF bub. She came about after nearly three and a half years of trying to conceive and was a frozen embryo from May 2016. She is our miracle baby. So heap the years of stress only fertility treatment can give you onto the fact that your precious child was now potentially sicker than you thought. Omg is all I can say!
So after three hours of tests and waiting in hospital we were nearly ready to be released. The lovely doctor there found nothing wrong with my wee bub and only as a precaution ran her blood test results passed her boss who clicked something being wrong. Suddenly our chats about what take-out to get on the way home turned to worrying about our baby.
We were whisked out of childrens emergency and into a short stay ward where we were told we may have to go to Auckland Hospital the next day for follow up tests. We were ALL a mess.
Poor Chloe was wrecked and eventually crashed out on her metal cot after a couple of breastfeeds. Paul went home to grab some baby clothes (a 30 minute drive away) when the head doctor came to talk to me. This was close to midnight. I will never forget this kind and gentle lady come in and sit me down. She told me because of Chloe’s very high white blood cell count in her test results there was a strong likeihood she had Leukameia. I remember staring at this woman trying to take in the fact that she was telling me my wonder baby had Cancer. All I could think was how could I tell my husband this news.
Telling him nearly broke me.
That was a black night and still one of the worst nights of my life. I cannot decribe how heart breaking it is to recieve this news about my precious wee girl. I could not believe it. Chloe was always so strong, so vital, and so freaking happy. How could she be this sick? How could my girl have Cancer, sure she was so young and not a bit sickly in general.
 The next day passed in a blur as we were sent to Aucklands Children’s Hospital. We checked in through Children’s Emergency and Chloe had many many tests done. We slept, cried, ate, cuddled and cried again. It really in impossible to describe what those first few days were like. Chloe did suprisingly well despite getting prodded and poked, getting surgery for a double hickman lumen line in her chest (iv line), a nasal gastric tube in through her tiny perfect nose, getting blood tests and even going to theater and a bone marrow aspirate and lumbar puncture done. She is a very resilient child. We are blessed with a strong and hardy little girl who will never remember her diagnosis. It be diagnosed at such a young age is a blessing in a way as my girl will never know the horror of what she has gone through. Once Chloe went to theatre and her results were back we had a meeting with a barrage of kindlly and matter of fact resgistrars, oncologists, nurses and the head of the Department.
Chloe was confirmed to have Acute Myeloid Leukaemia or AML type 8-16. It rare for such a young child to have this type fo Leukaemia and in the last ten years Chloe is the second child to be treated for AML 8-16. At this point we were told Chloe had a 1 in 5 chance to survive her Cancer. We were told so many facts, what her treatment would look like, how long it might take, what to expect. She could have heart problems, infertility, other organ problems, she may have stunted growth. We were told that hers was a very difficult disease and the treament was very harsh, that she may not even survive the treatment.
Honestly I can’t even remember most of it as after we heard her chances that pretty much broke us. My wonderful strong husband fell to pieces. He just could not speak he was was so distraught. The simple fact that he couldn’t deal cemented me after a couple of moments and I knew I had to be strong for him. And trust me he has done the same for me. I am so lucky to have this man as my own, he is my rock so it’s only fair I be solid for him too. So I asked the hard questions. And we  survived the meeting. We survived hearing our daughter probably wouldn’t survive the chemotherapy and bone marrow transplant. There really is no way to deal with this kind of news. Time helps. So we pushed on becuase Chloe needed us.We had to be strong girl. When she was awake, we put away our tears, we hid our fear and worry and we played with our child. We cuddled her, nursed her, held her, washed her, changed her, we rocked her when she was upset, and we took care of her. We were the best parents we could be to her in those first few days. My husband Paul after his initial struggle in that first meeting, turned into a rock of strength. Even though we both struggled with this huge horror, he was amazing. He was and is the best father to Chloe. When she would become unsettled he would scoop her up into his arms and jiggle her to some old Irish tune, which has since become the “Daddy Dance”.
If you were to ask me how we got through her diagnosis I would say we crawled and scraped through and if Chloe hadn’t needed so much care routines being so little (nursing on demand, and changes every 2-3 hours) I think it would have been much more difficult. If Chloe had been a more unsettled or clingly baby it would have been harder but shes always been a relaxed easy going little mite who self settled to sleep and rarely cried. The medical team were superb and the nursing staff was excellent. We were blessed with caring compassionate and professional people who worked to  get to know us and our girl and whose care and knowledge got us through each day. I really can’t thank them enough for the kind way they cared for Chloe, and us as parents as well.

We got through it in different ways. Paul needed to do things, accomplish things that required attention. He organised finances, insurances, he looked after rent, he took care of all of that side of things. I focussed totally on having enough of a milk supply for my baby. I made sure she had everything she needed. I did not leave her side. I could not leave her room for weeks. That’s how I survived. Paul was the opposite; he left several times a day, and that is how he coped. I still feel we balanced each other very well and we are extremely lucky to have had each other. He was strong when I was weak and vice versa.
And so we began treatment. But that’s another story. It was horrible, devastating and life altering. And we got through it.