ABOUT FRANKIE

On the 18th of April 2018, Frankie my 19 month old little boy, went to our local hospital for a blood test, the doctor wanted to rule out anaemia. Within an hour of leaving the hospital we had a phone call asking us to return urgently. The doctors continued to do tests and waiting for more results to come back. About 9.30 pm they said they were moving us to a side room, our hearts sank, something wasn't right........

The doctor came in and said, "Frankie has leukaemia".  Instantly, our world fell apart. No real comprehension of what this meant. They told us we would be transferred to Birmingham Children's Hospital the next day.

Pip went in the ambulance with Frankie and I followed in the car, we were put in isolation on the transplant section of Ward 15. The first day was horrible and the most emotional day I have ever had. 

They couldn't find a vein to put a cannula in, he looked like a dart board. They had tried so many times in different places. In the end an anaesthetist came with an ultra sound machine to find his veins. The screams were harrowing as I pinned him down. In between the screams he was shouting "all done Daddy, all done".

The doctors got us to sign the consent form for a bone marrow test and central line. They explained that they would be able to tell us what type of leukaemia Frankie had when they had done the bone marrow. It was about 8.30 pm and the consultant and another doctor came in to the room, they told us things weren't as clear as they were hoping for and wanted to perform another bone marrow on the Monday.

The bone marrow on Monday also came back inconclusive, we had to wait for the genetics to confirm which type he had. We went down on the Wednesday to the consultants room, the waiting was hard the nerves were horrendous.......

Frankie had Acute Myeloid leukaemia (AML) our world shattered again for the second time in a week. This meant long periods of time in hospital, intensive chemotherapy and the family being split up. We were told Frankie had only a 50/50 chance of survival. 

BROKEN.....

We spent the next 3 weeks in isolation due to a chicken pox scare, this was hard on all of us, before moving on to the main ward. Frankie responded well to the chemo and the sudden change in lifestyle. This little dude was an inspiration to us all. We did a further 3 weeks before having another bone marrow test and some home leave. 

We spent 10 days at home, within this time we had to go back to clinic to get the results of the bone marrow....... REMISSION. One word has never felt so good. 

We went back in to hospital and completed another 5 weeks stay with lots more chemo. Still in REMISSION. I cannot convey into words how that felt. Frankie survival rate has also increased to 80%........Amazing...... 

The final two blocks of chemo were very different to what we had experienced. We only did a week on chemo and then home, Frankie was neutropenic so going anywhere was out of the question and so was being around people. After a week at home we would have the 'spike'. This is a high temperature that happens but is always treated as an infection, this is a minimum 48 hour stay in hospital.

On the 4th of September, Frankie had his last dose of chemo. I thought this would be a joyous moment but it wasn't; it was scary and the not knowing what was ahead of us was also very scary. We knew that we would be back in a week so the excitement seemed short lived. 

Sure enough, a week later we were back at hospital for the 'spike'. It was strange, it felt like home and we felt secure and safe. Frankie had taken a turn for the worse, he had a 'Sepsis attack'. This is not full sepsis, it is on the scale and due to us being on the ward the nurses recognised this and acted so fast. If we were at home I think this could of been a different outcome. The end of the 48 hours came and we were ready to get out of there. We were leaving friends that still had a mountain to climb in the coming months, guilt takes over and you feel like you should be you that stays.      

Frankie's story is not unique, there are so many children fighting so hard for their lives. Although we are going to start off helping the newly diagnosed in Birmingham Children's Hospital, we one day hope we can help more children. 

Frankie got to ring the end of treatment bell on the 20th November 2018, a very proud and emotional day!