The Beginning

Hi, my name is Luke. I'm 29, and I like football, guitars, reading and tattoos. I'm a plumber so naturally like tea and coffee. I live with my girlfriend, Alisha - 23, and our two beautiful girls: Jessica - 1 and a half, and Caitlin - 4 and half, who has Acute Lymphoblastic Leukemia.

I'll start at the start, kind of. We're 5 days in so you've got some catching up to do. We only took Caitlin to A&E in Ipswich for nose bleeds, and after some routine blood checks decided to keep Caitlin in over night. It was this night (Wednesday 4th January) that we were told the news by the doctors. Caitlin had Leukemia.

Yup, the L word. It's hard for a parent to hear for the first time. It can only be compared to having the wind knocked out of you, fighting for a breath that doesn't seem to want to come out. Your world just disappears beneath your feet, and at the very mention of the word you instantly choke up and have to fight back tears that want to flood out. We were told that the doctors were contacting Addenbrooke's hospital to secure a bed and Caitlin would commence further testing with a view to starting treatment asap. The next day Caitlin was whisked away in an ambulance with full sirens and flashing lights! She loved it, until she got bored and fell asleep.

First thing you notice when you get to Addenbrooke's hospital is that it's massive. It's a labyrinth of corridors and wards and it's very easy to get lost. Thankfully, Caitlin's ward is fairly easy to find and is close and handy to the shops, food court etc. Secondly, the ward she is on is incredible, fully functional to children's needs, regardless of age. They have their own surgery theatre, kitchen, play rooms depending on age, shower and bath facilities and clothes cleaning/drying facilities. It's fully catered for parents who are going to be there for a while, which we were about to find out, we were.

The first day didn't really reveal too much to us. Caitlin was given a new cannula, which is a tube inserted into her hand and started off on antibiotics to fight off any infections. The next day, Caitlin would start her chemo with a bone marrow aspirate, a lumber puncture and the start of her steroids. The next day Caitlin was wheeled down to the surgery theatre where she was given a general anesthetic and quickly fell asleep. It's a weird experience watching your little girl be put to sleep, but both myself and Alisha was amazed by the speed and efficient nature in which the doctors and nurses ushered us out and got to work. Something we both felt thankful for, and that's one thing I will quickly add in now. The staff at Addenbrooke's, from the doctors and nurses, to the cook and the cleaners are simply brilliant, and we know Caitlin is in the right place. She came back a bit sore, but the doctors had renewed one of the cannula's in her hand which was a blessing. Caitlin hates needles and at the very mention of them, freaks out and cries. She's only 4, but sometimes maybe we think she's a bit older. She's very intelligent, loves princesses and has lots of friends. Anyone who has met Caitlin will know exactly what I'm talking about.

We then spoke to the consultant to gain an understanding of what we were up against in more definitive terms, which I will try to explain as easily as possible as and when Caitlin is given the various treatments. We were told that Caitlin's initial treatment will be for 4 to 5 weeks at Addenbrooke's, and split into different levels and varieties of treatment. We were also told at this point that Caitlin's treatment program was called Regimen A. She was in the "good risk" bracket of treatment, meaning: She's really young, she's a girl and she has a low count of Leukemia in her blood cells. At the 3 week mark of Regimen A, the bone marrow test will determine whether or not the treatment being administered is working or whether or not they have to increase the treatment banding and dosages. 

It was a lot to take in, and quite a shock. I suppose with hindsight we probably weren't prepared for the full intake of knowledge of treatment in one hit, but we asked for it. Caitlin was to have chemo in one shape or form for the next 2 years. Wow! The consultant then filled us in on what had been administered that morning. The bone marrow aspirate tests the red and white blood cells and platelets on a complete blood count and is an injection into the middle of the bone via Caitlin's back, which is then sent off for testing. The lumber puncture is an injection into the spinal cord and fluid to collect cerebrospinal fluid for testing to see if any cancerous cells have entered the spinal column and the brain. They also re-use the hole made by the needle to inject the first of the chemo drugs which was methotrexate or ITMTX for short. ITMTX stops making the "bad" DNA and starts killing the cancerous cells. She was then also administered the first of the Steroids, dexamethasone. This will help Caitlin's muscles build as she fights the Leukemia and is given in liquid form, but I can't remember if it's given via the cannula or in her mouth! Stoopid me!

I've highlighted the treatments and will do so with the others when Caitlin receives them, as it might be useful for referencing later on.

The bone marrow testing is at weeks one, two, three and five. The ITMTX and lumber puncture is at weeks one, two and five. The steroids are continuous for the five weeks. The next day (Saturday 7th January) was the first of the vincristine, or VCR for short. This is the active ingredient in a drug used to treat acute Leukemia. It blocks the cell growth by stopping cell division. Still following? Good. VCR is only administered at the weekend, and can only be done by the chief consultant on at that time. It has to be done every week and is done at the weekends as it's easier to remember that way.

I suppose that brings me to the obvious side effects. With all these drugs going into a little girl, there was always going to be side effects, and yes, hair loss is the main one. It's a bitter pill to swallow as Caitlin's been growing her hair for years to look like Rapunzel, but we knew the very mention of Leukemia treatment goes hand in hand with hair loss. Caitlin will likely lose her hair, we don't know when but we do know she'll need us when she does and we'll be ready for it. She'll also experience severe mood swings, loss (or gain) of appetite, stomach pains as her body deals with the drugs which may then give her constipation.

I'll leave this post there I think as it's been a lot to digest for everybody. What I will say is thank you for all the support, best wishes, gifts and offers of help we have received. we've been overwhelmed by everything and we'd like to thank you all from the bottom of our hearts. It's going to be as rough a ride as we can imagine, but I have no doubt in my mind that Caitlin is in the right place to be helped. The support given to myself and Alisha has been excellent and Caitlin is always made to feel like the princess that she is. 

xx