Millie’s Story

I’m Millie’s Dad, Darren, and I’ll start at the beginning,
Millie had been off colour for a while with little energy, she would often be found asleep in some very uncomfortable positions. Debs being a ‘worry-mummy’ took Millie to our GP who diagnosed “Canvey Flu” and sent her home. A few weeks later Millie had developed what looked like dark purple spots on her body and tongue, she has also started limping and her body was covered in bruises. I put the limp and bruises down to her sister Summer and had no idea what was coming our way. Debs once again took Millie to see our GP who this time told Debbie to take Millie to Southend hospital to get the spots checked out. Debbie phoned me at work and told me she had to take Millie to Southend hospital. I honestly thought she was just being a paranoid mum but I left work and made my way to the hospital. Southend did blood tests and two doctors came to talk to us.

Millie carLast year on May the 1st the world as we knew it fell apart at Southend hospital when we were told the news no parent would ever want to hear, “your daughter has Leukaemia”. Millie was 21 months old. What did this mean for our little princess? How serious was it? Would she survive? I can remember sitting and holding on to Deborah whilst Millie sat in her hospital bed completely unaware of what was happening and both of us crying like babies.


The doctors began to explain what this meant for us but if I’m honest I only took in about 10% of what they were saying. All I could remember were those awful words “cancer of the blood”. Now in my mind blood cancer was just about as bad as it could get but as the doctor explained the survival rate is quite high at around 70-80%. Sounds good, but my mind also told me that if there’s a 70-80% chance of survival then there’s a 20-30% chance of not!
We spent that first sleepless night at Southend hospital whilst they tried to find us a bed at a specialist paediatric cancer hospital. We spent that night in Neptune ward worrying and wondering where our little princess was going to be treated.
Day 3 greeted us with the news that Millie was to be transferred to Great Ormond Street Children’s Hospital where a bed had become available over night. Now if you have a sick child you want them treated at the best hospital which I believe is what we got that day. We were transferred by ambulance, blues and twos all the way. I can remember Millie sleeping all the way there in her mother’s arms even though the siren was blaring away.

We met Millie’s new consultant who explained the short term plan for Millie- a bone marrow aspiration to see what type of Leukaemia Millie had and to see how advanced it had become and to see if it had spread to her brain. This involved putting her to sleep and performing a lumbar puncture on her spine, drawing out some spinal fluid and bone to send away for tests the following day. Millie had cannulas inserted in her hands for bloods to be taken and medicines to be administered. The 3 of us spent the first of many nights together at GOSH.

In the morning that first time in the anaesthetic room watching whilst Millie was injected with this white liquid which would put her to sleep was one of the scariest experiences of my life. Once she fell asleep we were taken back to our room to wait for Millie to recover. More tears for us whilst we waited nervously checking the clock every 30 seconds praying that our little one would be ok. Our nurse came and got us after the longest 30 minutes of our lives, told us that Millie was coming round and took us to the recovery room where we was greeted by a groggy but smiley Millie. Millie’s first of approximately 20 lumbar punctures she will have to endure during her treatment was over and a success.

Now the wait for the result, this would take 24 hours but it felt like 24 years. There are two main types of leukaemia, ALL and CLL. ALL has a cure rate of approximately 90% whilst CLL cure rate is approximately 60%, as you can imagine the results which we were waiting for quite important.
That night again our nurse allowed me and Deborah to stay together in Millie’s room against hospital policy so that the three of us could be together for the results we would receive the following morning.

Our doctor came the following morning with the very best news we had received since Millie was diagnosed a week earlier. Millie has ALL, the leukaemia with the 90% cure rate, my mind was at it again, what happens to the 10% that don’t get cured? It’s funny that the words I used there was Millie has the best form of leukaemia, there is no best form of any cancer, there are just varying degrees of bad.
Debs and I took turns sleeping with Millie as they would no longer allow us all to sleep in the same room. Whoever was not sleeping with Millie that night would sleep in a room supplied by the hospital in the local area, until they finally transferred us to our local hospital where treatment would continue. For us this meant that one of us could go home each night to see our other children and to spend the night in a decent bed which was much needed by then as we were both mentally and physically drained.
Somewhere during this course of treatment Millie caught norovirus which meant we were transferred back to GOSH where we would spend the next 28 nights and without doubt the worst day of my life.
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Millie was not eating or drinking anywhere near enough to sustain herself so an NG tube was put up her nose to her stomach to allow the nurses to feed her and administer her drugs. Millie being Millie didn’t like this tube up her nose so decided to keep pulling it out. She must have had 10 different tubes inserted which she would either pull out herself or would come out when she was sick, the memorable one for me was when she pulled it out in the Waitrose near gosh. Eventually and with much pushing from us our doctor decided to put a PEG in. This is a tube which goes from her stomach to the outside of her belly. You can give special liquid foods and medicine through it. We named this tube “Mr Wiggly” and if asked Millie would get Mr Wiggly out of his pouch and let you feed or give her her medicine through it.

Millie was getting weaker by the day, she wasn’t eating properly the chemo and other drugs were hitting her hard, she would sleep for very long periods, she stopped walking, she looked so very sick. It was absolutely heat breaking for us to sit and watch our little baby going downhill so fast. The doctor’s seemed a bit baffled by it all, they stopped her chemo and then we got the news you don’t ever want to hear, “we are preparing a bed for Millie in the intensive care unit”. Our doctor explained that if Millie did not respond to her next shot of antibiotics they would be moving her into intensive care. I thought then for the first and only time that I was going to lose my baby. Debs and I were stunned, we knew she was bad but we didn’t realise how bad Millie was. Thank god Millie slowly began to respond to the antibiotic and within 2 hours she was awake and responsive. It turns out that Millie is allergic to one the chemo drugs she was given called Vincristine. This drug had taken away my baby’s ability to walk and had nearly taken her life. She no longer receives Vincristine.

Sometime during the 28 nights, Millie had cannulas in both hands and both feet and could not move out of her bed, eventually all of the cannulas stopped working and Millie had no veins left that they could access so the decision was made to insert a Portacath under her skin connected to a vein above her heart. Another operation and more worry for mummy and daddy. This is still in today and bloods are taken weekly by our medical team to check for virus and infections. It is also used for her anaesthetic when she needs her lumbar punctures.Millie pout

After our 28 night stay curtesy of GOSH we were finally allowed home. I cannot tell you all what a relief that was to finally have the whole family together again under the same roof. You think you have got your life back together and can live a normal life but unfortunately cancer doesn’t work that way.

A day in the life of Millie:

  • get up, take Millie’s temperature, if it’s over 38 degrees, off to hospital where they keep her in for at least three days and often a lot longer whilst they pump her full of antibiotics to try to suppress whatever virus she has picked up.
  • assuming her temperature is ok give her her morning medicines and try to get on with your day as best as you can.
  • late afternoon: more medicine, some days depending where she is on her cycle she gets more medicine after teae
  • evening: temperature check and again if it’s over 38 degrees off to your local hospital for at least a 3 night stay.

Millie has weekly bloods taken by our community nurse so that they can test for infections and check that she is well enough to continue on the same dose of chemo and steroids. You are constantly paranoid of those around you in the supermarket or just out and about in case they have a cold or flu or chicken pox or something worse that could be life threatening for your little baby but you also need to keep a balance for your other children to try not to let Millie’s cancer affect them and their upbringing too much.

“The time we spent at the Karen Green caravan was a fantastic time to spend together as a family. The girls loved learning to swim in the pool and the pool slides, they enjoyed the beach and the donkey rides but I think most of all they enjoyed the children’s entertainment and soft play in the site club house. It was a long overdue break from the hospital visits/stays and we all had the best time which was helped by the exceptional sunny weather. Thank you Karen Green”

So here we are, 13 and half months into treatment with 13 and a half to go,

Since diagnosis Millie’s spent over 90 nights in a hospital bed,
She’s had 12 lumbar punctures and 15 anaesthetics,
2 operations to have medical equipment fitted under her skin and 1 to remove it,
7 blood transfusions and 3 platelet infusions
She’s had over 450 doses of chemotherapy, over 100 doses of steroids and had more blood tests than I can count.

Millie

 

BUT

Millie’s hair is growing back for the second time

She’s always happy and smiling,

She’s slowly putting on weight,

She’s loved by all she meets with many of her doctors and nurses telling us she is their favourite

And she has more courage than anyone I know

And she WILL BEAT THIS CANCER!

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