Brooke and Charlene: Brooke’s story

After returning from a family holiday, Charlene assumed her 3-year-old daughter’s rash and bruises were down to playing with her brother and a possible infection picked up while away. Here, Charlene tells her daughter Brooke’s story.

Brooke’s journey started on Sunday 2nd October 2016.

We had just arrived back from our first family holiday to Mexico and it took us years of saving to get there. We were so excited to go but devastated to come home, although we were excited to see my mum and dad (Nana and Papa).

It was Sunday morning and I was getting Brooke ready as we were all going out for my mum and dad’s Ruby wedding anniversary lunch. I noticed some purple spots on Brooke’s belly which I thought was maybe a rash or sun spots from Mexico, or even a tropical disease. I was convinced when we were away one of us was going to get the Zika virus.

I showed Kenny, Brooke’s dad, and we decided to call out of hours. They advised us to go up to A&E, so Nana and Papa went home to Perth and me, Kenny and Kaycee, Brooke’s big brother, went up to the hospital. I remember googling the rash and leukaemia came up, but part of me was in denial; this was not leukaemia, my child did not have that.

Why would God do that to us, what have I done to deserve this to happen to my little girl?  Deep down I knew that it was leukaemia.

The doctor in A&E examined Brooke. Her spleen was enlarged, and she had bruises on her back. We put it down to a normal running around 3-year-old child. She was in and out of the water park with her brother every day, all day in Mexico.

I burst out crying and asked if she was going to die. The doctor replied not in these days as she will get some tablets and she will be fine and we will be on our way home.

We were taken to the out of hours department in the children’s ward and I remember speaking to a nurse called Susan. I asked her a million questions while we were waiting on Brooke’s blood results coming back. I said to Susan I know its leukaemia, I just knew it.

I asked the Doctor not to take us to a ‘quiet’ room as I would instantly know it was not good news, and within the hour the results were back. The Doctor told me, “I’m very sorry, it looks like it’s leukaemia. I have called Dr Husslebee, she is one of the oncologist doctors and she will be here in 20 minutes.”

I asked two things: is Brooke going to die and is Brooke going to lose her hair? I knew what chemotherapy was and I also knew the side effects.

I went outside the hospital to call my parents and I will always remember that call. That noise my mum made when I told her. The scream will haunt me for the rest of my life.

Brooke was immediately hooked up to fluids through an IV in her arm. All I could think was that this was not happening, it wasn’t real life! We were still jet lagged from Mexico! Our princess was going to lose her beautiful hair that I have never ever had cut. It was down to her bum; I was distraught. I had never felt this type of pain before.

My parents travelled through from Perth to Dundee where Ninewells hospital was. The Doctor was there, and he told us it looked like acute lymphoblastic leukaemia (ALL), but when we went to Edinburgh the next morning we would have confirmation of the type of leukaemia my little girl had. We got to stay over in a ‘family room’ in the hospital that night, whilst Kaycee went home with Nana and Papa. Life was never going to be the same again.

The next morning, we were transferred through to the Royal Hospital for Sick Children in Edinburgh. I had to get in the back of an ambulance with my 3-year-old daughter and not know when I was coming home again. I remember her getting wheeled out on a stretcher without a care in the world and this man was standing outside watching us and he just stared at her on the stretcher, smiled and then looked at me with tears streaming down my face. Her dad was following us in the car and went home to get clothes as we were told we would be in Edinburgh for at least four-five weeks.

The ambulance crew were so kind to me. I was traumatised and in shock, and I remember walking into the hospital with Brooke on a stretcher and people looking at me with sympathy. How hard it was not to cry! The struggle to stop the tears rolling down my face was unbearable.

I tried to prepare myself for seeing all the sick children on the ward who had cancer. Would my princes look like that? No hair, eyebrows or eyelashes. As we got up to the ward, I was crying the whole time thinking I shouldn’t be there. If I could have grabbed Brooke and ran out that door then I would have. This felt like a nightmare I couldn’t wake up from, but unfortunately, this was real life… our new life.

Brooke had her Peppa Pig bedding and the Doctor who greeted us was called Matt. I will always remember him as his first words to us were: “Brooke, I love Peppa Pig but see that George her brother, I hate him, I just want to drop kick him out of this ward”. That made me laugh; it was the only thing that made me laugh.

Next it was x-rays, but I couldn’t even help her stand still I was crying so much!

The next day was a blur. Brooke had surgery where she had her port inserted and a bone marrow test to check the type of leukaemia and if it was in her spinal fluid. It came back negative, which was a relief, and she was diagnosed with ALL.

A few days passed, and we were staying in a villa opposite the hospital run by Clic Sargent. Brooke’s dad and I would rotate sleeping on the ward with her, and Kaycee came through with my mum and dad every few days. That was Brooke started on treatment – she was having chemotherapy and steroids. The next few days passed in a blur and then out the blue we were told we were going home. In fact, after day five, all the leukaemia cells were gone from her blood! The tears would roll every single time I would think about what she was going through. We were shocked as we were allowed home after just 10 days.

When we got home, and after a few days, I decided to get Brooke’s hair cut into a short bob, and the next day Brooke ended up with a temperature. It was a medical emergency and we needed to be at the hospital within the hour, so we rushed her to the hospital and prepared for a wee stay!

They managed to get her temperature down and they took bloods, then on day two her blood cultures grew an infection; she had E-Coli! She was then started on a specific antibiotic to treat it!

It was my turn at home that night and Kaycee was at my parents’ house as it was the October holidays. Her dad called me first thing in the morning as one of the nurses who was looking after Brooke noticed her heart was beating faster than normal. Brooke had put on a considerable amount of weight due to the steroids.

They doctors were concerned, and before I knew it we were immediately transferred onto the High Dependency Unit (HDU)! We were convinced we were put there as she was going to die! The doctor who was looking after her was Dr Buddy. This man took us into a side room after we asked the nurse and he explained to us she was only in HDU to monitor her fluid intake and outgoing. I will always remember how he reassured us and I will never forget him for doing this for us!

As a few days passed, she had improved, and we were then told we were going back to the normal ward. This was devastating for us as it was all still new to us. We were told she was getting better and no longer needed to be in High Dependency anymore.

While this was all going on we were still trying to figure out what we were going to do financially, as I was now going to be off work for the foreseeable future.

Brooke was allowed home after a week and it’s been great. We have had another 48-hour stay in hospital due to a virus she had, but she is amazing.

We seemed to sail through the rest of the different phases of treatment and we are now currently in maintenance and due to finish treatment on the 11th December 2018.

Two years and a half roughly of chemotherapy treatment. Every month Brooke has five days of steroid, Vincristine (which is a type of chemotherapy) and this is done through a push syringe into her port. I also give her daily chemo at home which is liquid form every night an hour before dairy and after, as the chemotherapy is affected by dairy!

I started a new job in July as a fundraiser for a national charity myself. Whereas some other mums wouldn’t dare go back to work, for me it is my sanctuary, my place to go and not constantly worry if my little girl’s cancer is going to return or not! I of course will always worry; every time I see a bruise on her legs I wonder if her platelets are low because her bone marrow is full of leukaemia.

We are always on edge worrying about whether she has a temperature, so we check her temperature all the time, but we are trying to only do it so often as I get so worried I don’t get much sleep; I’m usually up till 3am just thinking or checking on Brooke. I get scared in case I miss that she will have a temperature as this is life threatening and could potentially kill her!

My outlook on Brooke’s illness is: be positive as much as you can be! I keep busy to distract myself from this horrendous nightmare and pray the end is near.

Until next time…

This was on Christmas Day 2018

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