Love and Other Drugs

Caitlin managed to bang her head in her sleep last night, and has complained that it's been pretty sore and has a small dent where she banged it. Not wanting to take a risk we took her up to Ipswich hospital where she still is as I write this. They're happy with her, but are going to keep her in overnight for observation anyway.


It makes it a bit more fun come the morning though as we have to be at Addenbrooke's for 9.45 for an Echo cardiogram. It uses ultrasonic waves directed over the chest wall to give a graphic record of the heart's position, movement, and to check the internal valves of the heart. With all the drugs going through Caitlin's body they need to make sure everything is still working as it usually would so it's reassuring that she's having it tomorrow.


We then have her Tuesday review as normal straight after so it should be a very busy morning. We're coming up to week five which marks the start of Minimal Residual Disease. This is important and is basically where they look at the bone marrow and the other data that has been accumulated and can determine whether the treatment is on course or if they have to increase it.


We can start to decrease Caitlin's steroids next week, which is great. She will also start on a new drug which is Mercaptopurine, which inhibits purine nucleotide synthesis and metabolism. Yup, I have no idea what that means either but I'm guessing from the sounds of it, it will stop the bad cells from reproducing which can only be a good thing. At week 6 we'll be down to one visit to Addenbrooke's a week which is good.


It's late and I've got to be up early so I'll leave it there. Caitlin is pretty up and down so any nice messages for her is always appreciated.


xxx 

One Fine Day

It's an unusual Friday for us as Caitlin doesn't have to have any bone marrow or lumber punctures today, which is great for us as it means a lie in till 7.

Caitlin had her usual review, weight is now over 3 & a half stone (!), blood pressure was a bit high & Caitlin has now been given some medicine to make her go to the toilet. The doctors think she might be constipated & it'll help her little belly.

She was given a cannula, quickly followed by the VCR which is the main chemo of today. Usually, at this point Caitlin would have some antibiotics, but the blood tests came back looking really good so she didn't need any. We also asked to see how the bone marrow tests were coming out & they came back really good too! Her blood pressure calmed down, & even her temperature had dropped. A small victory in a large battle, but we'll take it.

The only problem is, people around us are still getting more & more bad news & it seems to be getting worse. I don't think I've known so much sorrow and suffering in one month, but its the way it seems to be. Our thoughts are with all our friends & family who are having a tough time, & I can only hope it gets better for you soon.

XxX

Supersize Me

We were back at Addenbrookes today for Caitlin's weekly review. One thing we were really concerned about was her breathing which sounds laboured, but they've checked her over & Caitlin was fine. It's the weight she's put on from the steroids & her little body is slowly catching up.

I'll be glad when we can start decreasing the dosage of the steroids. It's nice to see Caitlin eating & looking really healthy but at times she's eating because her body wants more, whether or not she actually wants it. She'll complain that her belly is sore from eating, but will still ask for a snack, satisfying the crave of the steroids. Unfortunately, I can only cook as fast as I can & most of the time it just isn't fast enough for Caitlin's stomach!

Everything else was routine today. Needles, blood, peg, antibiotics. Caitlin had a bit of a cry at the hospital but it didn't last long. I think the whole experience of it all is quite overwhelming at times for her & I don't blame her in the slightest for getting a bit upset. I don't think I'd have the resolve to go through with what Caitlin has to.

XxX

Barbershop

Today was a hard day, and one that I suppose is a milestone in Caitlin's recovery from Leukaemia. Today, Caitlin had her hair shaved off.


We noticed her hair coming out at the end of last week but as the weekend progressed there was more and more and it had started to irritate Caitlin. We asked her about it and asked if she wanted it shaved and she said yes. I think the prospect of not having her hair washed was too good an opportunity to pass up!


We went from this:

to this:

There isn't a parenting handbook that prepares you for seeing your little girl have her hair shaved off, and watching her at the hairdressers reminded me of when we first found out that Caitlin had Leukaemia. It brought back those familiar feelings of anger and sadness. I guess we've hardened up to all the needles, and drugs, and terminology but seeing her without hair brings it back to reality. All you have to do is smile, she's still gorgeous, and nothing will change that.


Tomorrow is review day at Addenbrooke's, but she'll also have her Peg injection again. We're in the middle of week 3 at the moment so hopefully we'll know more about how everything is progressing.


It might start getting rough from now on in, as Caitlin hasn't been ill yet. Hopefully I'll be better prepared for it than I was today.


xxx

There Will Be Blood

An early start for us all today as we had to be at Addenbrookes by 8.30. We managed it, just, thanks to Cambridge traffic. It's been procedure day today, which has meant Caitlin has had to be nil by mouth (didn't put that as the title, far too obvious. The one there is really, really clever!!) since last night. Again, having a starving hungry 4 year old isn't the easiest of things but we got through it.

They tested her bone marrow again today, along with antibiotics afterwards followed by the VCR for dessert. She's a tough little girl & has dealt with it well, until she nicked my packet of Smokey Bacon crisps, then she crossed a line!

We've been given the date of 10th of February for her Hickman Line. This is a tube that goes directly into one of her hearts valves so they can draw blood or administer drugs when they like rather than have to put a cannula into her already sore hands. This is great news but also one that does come with surgery for Caitlin to fit it, but I'll leave the ins & outs for another day.

One thing we have noticed is that Caitlin's hair is coming out. I'm trying not to draw attention to it too much as quite honestly, I don't want Caitlin to panic unnecessary. She knows it's going to happen but if we can play it down as much as we can it'll help calm her as & when it does. The last thing I want is Caitlin to stress, that's the parents job!

Her blood samples have revealed Caitlin has next to no neutrophils, which means she has an extremely low immune system so we have to be extra vigilant against illnesses. The slightest infection & Caitlin's chemo changes quite a bit.

That's all for tonight, I'm now going to kick Caitlin out of my bed & into hers.

XxX

Sucker Punch

Yesterday, Alisha's nanny Val lost her fight with leukaemia.

It had been a long on/off battle, with Val enduring years of chemo & after so much pain she decided she'd had enough of treatment & just wanted to go home. They respected her wishes, gave her morphine to ease the pain & let her go home.

I'd met Val a handful of times & thought she was a lovely, caring & brutally honest woman in which I held a lot of respect for. My love & best wishes go out to her family who will miss her dearly.

The news yesterday was inevitable, & a small relief that Val was no longer in pain. I guess it just gave us a stark reminder at what we're up against & the devastation to families that it can cause.

Sweet dreams Nanny Val. We miss you.

XxX

Deja Vu

Caitlin had a nose bleed earlier for 45 minutes. The kind that started this journey for us all, & the place it led us to that day, Ipswich Hospital.

The blood test was swift, a prick to the finger & draw some out into a vial. After 10 minutes the results came back & revealed that her platelets were absolutely fine, but her haemoglobin was the lowest it could be, meaning Caitlin was Neutropenic. Risk of infection is at its highest & with that they've decided to give her platelets & a blood transfusion.

We're currently halfway through (3 hours for the transfusion), we've watched Anastasia & we're now watching Happy Feet! Caitlin is pretty tired & generally worn out. It's understandable but she's being a trooper. All she wants to do is go home.

XxX

Driving Miss Daisy

Today is the 1st day back to Addenbrookes. This is going to be a twice weekly visit for the next month. Tuesday's are review day & Friday's are for procedures like the bone marrow or lumber puncture.

Today's review has looked good so far, her blood count from the previous test has shown up exactly as the doctors thought it would, her weight has gone up (obviously) & the signs are good. Her temperature was up a bit earlier but it has calmed down. If it stayed up, the doctors would have kept Caitlin in, & we'd be back to square one.

The hardest part was that Caitlin has had another cannula put in to have a blood sample taken & to be given antibiotics. Caitlin did get quite upset but the nurses are amazing in calming her down & letting them do their job. We're still waiting for her antibiotics to be given at the current moment, but in the meantime, her 2nd favourite cook has made her lasagna & sausages. (see the picture!!)

I'll update later. XxX

Animal House

Jessica is home, & don't we know it.

XxX

Return of the Jedi

At 1 o'clock this afternoon, Caitlin was discharged from Addenbrooke's. YYYYYYYYYYYEEEEEEEEEEEESSSSSSSSSSSSSSSSS!


She'd had her VCR treatment this morning along with her regular steroids, and then the cannulas came out. Caitlin was an absolute star, there were no tears, a little moan and a massive relief. The needles in her hands have been the hardest thing for her. Normal things like eating and drawing are so much harder for her and is quite sore so having these out has made her very happy.


After packing away all of her cards and presents (again, a massive thank you to everyone. It's all really helped Caitlin through this past week) and then had to wait for her medicine to arrive. As we're going home, we're now in charge of giving Caitlin her medicine which is a frightening prospect. We've cleaned and cleared the house so we have to be as organised as possible now to make sure everything is right.


We now face a month of going back to Addenbrooke's every Tuesday and Friday. Tuesday's for chemo, Friday for the bone marrow and lumber puncture. It's these four weeks that are the most vital in Caitlin's recovery and every aspect is analysed and scrutinized to make sure the chemo is doing what it should.


Caitlin arrived to balloons and presents from our lovely neighbours and Nanny Sally, Steve and Uncle Shea. Cleaning the house carried on and a massive thanks to Sally for ironing all our washed clothes for four hours solid! After a scrummy dinner (Daddy is still the best cook ever!), a bath and her meds, she's in bed. It's been a long day, after a very long week but she's so happy to be home and it shows. I've missed my girls so much, and Caitlin always has the ability to cheer me up.


I will end on the best thing I've heard in weeks, and it comes from my Princess's mouth on our shopping trip to Tesco's earlier:


"Daddy, I think everyone is happy I'm not at doctors now."


Couldn't have put it better myself.


xxx

This is Spinal Tap

It's 11.40 pm and we've finished tidying and cleaning as much as we can for today. There is still stuff to do but I simply don't have the energy, it can wait till the morning.


Caitlin was taken down to theatre early this morning as planned. She'd been Nil By Mouth since the previous evening so we were pretty anxious to get the procedure over with early on. This was the second bone marrow and lumber puncture (get the title now? I couldn't resist!) Caitlin has had and this time she felt it a bit more on her return to the ward. Even under anesthetic, it was always going to be a bit sore but try telling a starving four year old that she has to lay down for half an hour before she can have breakfast. It just doesn't happen.


Which brings me to my next point, Caitlin's appetite has increased massively due to the steroids. We knew it would but we're still pretty shocked by the amount Caitlin is now putting away. I suppose we could say we're in a "nice" period at the moment, the chemo starts to take real effect around week 3 so I guess we're in the calm before the storm right now. There is a small chance that Caitlin won't get sick from the chemo, or that her hair won't fall out, but everything in her treatment has been fairly predictable up till now so I don't hold out much hope. I think all we can do is prepare ourselves mentally and hope we come through it.


Caitlin has been painting again today, and also had a bit of school before she got tired. She also had a visit from Auntie Diane and Cousin Lily and loved her new puzzle which she quickly got to work on. The amount of presents she's had has been amazing, and daunting as we need a 2nd house to keep Caitlin's toys in.


Tomorrow, as long as everything goes to plan, is the day that Caitlin is discharged from Addenbrooke's. When I say discharged, the schedule means we have to go to Addenbrooke's every Tuesday and Friday for treatment for 4 weeks as we're in this induction phase of the treatment.


I'll leave you with a picture of our princess with her new haircut, and of her princess with her new haircut.

xxx

The A-Team

I've only just realised that the day and date appear at the top of this post so I don't need to add it anymore!!


Today has been the first day that I haven't been up to see Caitlin, which has sucked really as you want to be there every day for them. It's been another "slow" day which is great for Caitlin as this means no needles or major chemo. To add to that she's also been given the all clear to leave the barrier room finally, so she can interact with the other kids again, stretch her legs and have fun in the play room.


They certainly picked a good day to allow her out again as the pantomime came to Addenbrooke's for the kids! She got to see Aladdin up close and from the sounds of it, loved every second of it.

It's amazing to think of a pantomime inside a hospital ward but these are the lengths that Addenbrooke's will go to make sure the kids enjoy themselves as they go through such rough times. They have a cook who works solely on that ward to cook the kids whatever they want, whenever they want it. Each child's treatment is different and their tastes and times when they are hungry differs from the next so having him there all day is brilliant. They have a Play Team that sorts out the activities for the kids, ranging from painting, to puzzles to simply making sure they have the right DVD to watch if they're tired and just want to rest. The ward has their own teachers to ensure the kids are getting the education they need so they haven't missed out when they're well enough to go back to school. They are amazing, and we'll never be able to thank them enough for what they've done. Not just for Caitlin, but for the support and information they've given us to help us battle the Leukaemia.


You'll also notice, this is the first time I've spelled Leukaemia right!! Bloody American spell checkers!!


The main reason I've been at home today was to prepare for Caitlin coming home. We have to make sure everywhere and everything is clean and spotless, and this meant completely gutting the house and getting all Kim and Aggie on everything! By that I mean, me and my Dad, who has been brilliant today. It's quite shocking how dirty everything gets, and he's been really patient with me so I thank you! I'm sitting here writing this looking at the house in absolute ruins at the mo, but we've made good headway. It looks like Caitlin will be allowed home on Saturday at around 2pm so we haven't got much time, so I better crack on!!


I'll update tomorrow as Caitlin has more chemo.


xxx

True Grit

Wednesday 11th January, and after struggling to get out of bed this morning (combination of bad back and fatigue) I got to the hospital to find Caitlin had had her breakfast, juice and meds! She never fails to amaze as she gave it to herself this time. It's been a "slow" day today, in that Caitlin hasn't had any major treatment, just the usual steroids and antibiotics to help her fight any infections.


Infections are going to be the hardest problem we have to contend with when Caitlin comes home. If she gets any kind of infection it will affect the treatment and could set her back on her recovery. She hasn't had chickenpox, or measles so we're going to have to turn into ninja parents from now on!!! What we are trying to avoid is a condition called Febrile Neutropenia. Basically this means Caitlin would have a low count of neutrophils in the blood. A neutrophil is a type of white blood cell that helps fights infection and a low count of these increases the risks of infection. We have to be extra vigilant with food preparation, storage and the way we cook everything. No more microwave dinners or takeaways!!! In reality, it's just standard food practices but we have to be more aware of them as the consequences could be devastating to Caitlin's recovery.


Caitlin also got a visit from Grandma Sandra and Jessica today! She loves seeing her Grandma and especially Jess as the mischief they both get up to is sometimes of biblical proportions! I haven't really spoken about the effect this is all having on the two sisters and us, and today hit home a bit more for all of us. It's the hardest thing in the world when Caitlin asks to go home and Jess is so desperate to stay with her sister and mummy. When Caitlin comes home hopefully we'll get a bit more normality to our family life, but for now we have to show our resolve and harden up to it. This is what we have to do and we will. Hopefully, when they're both older I can show them this and explain why and they'll understand. For now, I'll just have to accept the cold shoulder off my little girl and the hurtful looks from my bigger girl when she has her needles. 


xxx

Breakfast at Tiffany's

It's Tuesday 10th January, and for breakfast Caitlin had Cornflakes, toast, juice and these:

Today she only had two of these as this was from the other day, but you get the idea. She has her steroids and then usually a syringe to enable her body to cope with the steroids and not complicate things further.

We've been overwhelmed with information, so hopefully I can try and make it more simple. Sometimes I'm going to get times and things wrong as it's confusing trying to make sense of everything, but I'll try my hardest to get it right first time.

We've saw the physio's early on who has given Caitlin a booklet of exercises to do. The steroids are going to give her mood swings and make her tired so that she doesn't want to do anything, but we have to push her and get her active. Sitting around will only make things worse later on so if we start early on, we'll have a better chance at a later date.

Caitlin had a visit from Nanny Jane and Billy today and she was ecstatic. She's always happy to see family and it made her day, playing games and showing her latest drawings. It's always great when Caitlin is laughing and smiling as the steroids give people what's affectionately called "Demo-grumps", and Caitlin is no exception. She does get tired and withdrawn quickly and it's something we're going to have to cope with. As a parent you want your child happy and smiling all the time, but the reality of the treatment just doesn't allow it. It's going to be hard initially to adjust to this, but we have to stay focused, positive and remember that we're working towards the goal of completely getting rid of the Leukemia.

Which leads me to Caitlin's next part of the chemo. Its called Peg Asparaginase. Asparaginase is an enzyme that breaks down the amino acid asparaginase and will block the growth of any tumour cells that need the enzyme to grow. Unfortunately, its an injection! For a four year old who absolutely hates needles, Caitlin is doing incredibly. Its amazing to see this kind of fighting spirit in such a young girl and it makes you proud to be facing it all head-on along side her, knowing that she is probably a hell of a lot stronger than we are!

Caitlin has also had another cannula put into her hand for more antibiotics and to take blood samples, yet again another needle but she braved it with typical Caitlin flair. We also met the dietitian today, who gave us some useful information about what Caitlin can and can't eat. I think it was pretty clear that we need to change the way we do things and organisation is key to it all. The other person we saw again today was the consultant to go through yet more information about Caitlin's treatment and future plans.

It's a lot to take in so I'll probably end there for tonight, it's 00.08 on the clock and I need sleep. The last thing I will say is that the support and good luck messages from everyone have truly been incredible and it's really helped Alisha and myself deal with it all. We cannot thank you all enough.

xxx

Little Miss Sunshine

It's Monday 9th January & Caitlin has had her morning steroids & two others that will help her body cope with the steroids. Because her body is already being affected by the drugs, her stomach is following suit. She has stomach ache & is finding it hard to go to the toilet. When she does though, its not as solid as the nurses would like so Caitlin has been moved into an isolated room until they are sure it has all past. The room has its own tv & even a Wii so Alisha is happy!

We're seeing the consultant from Ipswich hospital this afternoon to discuss what happens next, but its a possibility that Caitlin might be allowed to come home this coming weekend, depending on results.

Tomorrow is going to be the first administration of a new drug for her but I'll explain it tomorrow as its an important one. For now, she's still smiling, & that's all we need.

XxX

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