28 April 2011

All home!

Paige is home! Her stats are stable and she hasn't had any adverse reactions to the chemo. Also, she came off the saline drip a couple of days ago, which made a big difference to her mobility. Most of the drugs she is taking are oral, but she will need to go in for other drugs (as an outpatient). Periodic blood tests will also be required, but we will monitor her temperature and general well being. Any high temperature (or sickness) and we will be driving immediately to the hospital, probably for a few days.

So this is excellent - it is much better to be at home and going to the hospital, than at the hospital 24/7. The Induction phase has another few weeks to run, after which she may take a short break. Further hospitalisation will be necessary for the next course of treatment; as always, it all depends on how she responds to treatment.

27 April 2011

Chemo 2

Paige had her 2nd dose of big chemo today and smiled through it all. She now turns on her mobile and dances at will and flirts with all the males on the ward especially Joseph who is a couple months younger than her, today they exchanged beautiful smiles and she reached out and touched him :-)
We've now been downgraded from first class (private room) to economy (4 bedded bay) but Paige absolutely loves it because everyone passes by and plays with her and calls her 'gorgeous' to which she responds with a beautiful smile.
The doctors continue to be very happy with her response to medication and her bubbly personality. We've been advised that if she continues like this that we may be released as outpatients soon.....fingers crossed. The requirements to take her home are that continues to be well and that the Head nurse signs me off as ready and confident enough to look after her on my own.

26 April 2011

Induction

Lisa has explained the prognosis following the results of the cytogenetics. We have also been given details of her chemotherapy, which will last two years and three months (best case). The first phase is called Induction and the treatment drugs are shown above - this will probably only make sense to the medically-trained among us, but further details of most of these drugs are given here.

Side effects should include tiredness, fatigue, sickness, low WBC count, anaemia, drop in platelets, hair loss, among others. However, a week into the treatment and she only has a low WBC count. And no hair loss - fingers crossed. It's early days yet, but she is tough.

 As you can see, we are hoping to be discharged soon after the 18th of May. The remainder of treatment could be as an outpatient, or with short periods in hospital. But a lot will depend on her response to the treatment, any complications, etc, etc.

Too early to plan too far ahead, but we're looking forward to bringing her home.

Phonecall

On the way home today, Sam pulls out his toy mobile phone and starts talking:

"Hello?"
"Hi Mummy"
"I good!"
"We going home we going in the garden in the sunshine and Harry is going to come and play"
"Then I going watch TV"
"And we coming to see you and Paigey Lou Lou in the hospital"
"OK, Bye!"

Imagine that with the strong Trini accent that he picked up from two months in Trinidad!

He has also taken to answering the phone at home..which is useful when the telemarketers call.

24 April 2011

Diagnosis

The results of Paige's cytology were shared with us last week and her sub type category of ALL is T ALL' This is the best prognosis that we could have hoped for as the medical team were almost convinced that she had Infant ALL and had alreday written up her drug charts! Paige does not have the gene rearrangement and has the presence of T cells which is more consistent with the biology of older children. The consultant has advised us that in the last clinical trial only 4 out of 1500 infants had Children's leukemia - so Paige is in the ABSOLUTE minority thank god :-).

So her Chemo will consist of less intensive drugs and will run for two years, most of which can be given as an outpatient if she is doing well. She is currently in the Induction phase and this will run for 4 weeks, so her hospital stay if all goes well will be circa 4 to 5 weeks.

Paige is responding really well to her Chemo and was allowed to sit outside in the sunshine today!

Lisa

21 April 2011

Day 9

Sam and I are sick. Not very sick, just runny noses and coughing. In fact, it has not slowed Sam down at all, he is still as happy and energetic as ever. I, on the other hand, am knackered and I didn't got to work today or yesterday. This is a mini disaster. Paige has started chemotherapy and is now super vulnerable to infection: recent blood tests show that her neutrophil count is extremely low, one of the reasons why she is in an isolation room.

So I won't be able to relieve Lisa this weekend until I am well and Sam won't be able to see his mother or sister either, and he asks about them every day. We are loading up on the vitamin C (or, in my case, rum, sugar and lemon juice).

Paige finally had her first Lumbar Puncture today - stay tuned for results.

Russell

18 April 2011

April 18th - Dancing

video

Day 6

Last night Lisa left Paige for the first time to get a good night's sleep at home while I did the night shift. The room Paige is in has a single fold-down bed for one of us to sleep on, as well as an ensuite. It's really luxury compared with being on the ward and is usually given to patients who are a) infectious and need to be isolated, or b) vulnerable to infection and need to isolated. First-time families (such as us) are given any spare ones to help ease the transition into this new life of ours. I imagine that, once Paige becomes a regular, we will be on the ward again.

Her stats are monitored continuously - four-hourly BP and temperature, blood tests at regular intervals - so there is the danger that she gets woken up in the middle of the night. Yet last night she was an angel: smiled sweetly at the nurse and went back to sleep. Result! Now if I could only organise a good fried breakfast...

Update: Paige's white blood cell (WBC) count is down to 32 (x 1000)!  It was well over 100 last week so this is good news. She has been on a saline drip since she was admitted and it has obviously done the job. This means that (1) we can reduce the amount of saline being administered, and (2) the impact on her kidneys is reduced. Apart from the saline, for the last week she has been taking a drug to help her kidneys deal with the reduction of the WBC. She has also been on steriods since she had the Central Line put in and she is responding well to those too. Unfortunately they taste terrible and she is getting wise to all of our tricks!

Piam Brown Unit

The ward Paige is in is called the Piam Browm Unit, a specialist paediatric oncology unit. I am very impressed (though I admittedly have little to compare it too) by the facilities. These include (for the children) a TV, XBox 360 and laptop for every bed, two play rooms - one for children and the other for teengaers and a play specialist (what a great job!). The adults have the benefit of showers, laundry facilities, a kitchen and quiet rooms where children are not allowed. You could live here. At the moment, one of us does. As do the other parents.

Of course, patient care matters more than the number of XBoxes and in that regard we are also happy. The senior doctors on the case obviously have a large amount of cancer expertese, while the nursing team are very experienced and knowledgeable. And the whole operation is geared toward children. Paige, being the only baby at the moment, gets a lot of affection!

Nothing like being around other people in similar (and worse)situations to put things into perspective. Paige is still (otherwise) healthy and in good spirits, with all major organs functioning as normal. No tumours or major complications. Also she does not understand what is happening. But it is much harder for the older children to come to grips with - not to mention the side effects of the chemo and the constant poking and prodding.

Having said that, many of the children who have had cancer for a while appear to be getting with life as normal. The 6-year old girl whom we met last week is more grown up and mature than some children twice her age.

There are good days and bad. At the moment we are enjoying the good days.

Russell

17 April 2011

Day 2

14 April - Today Paige had her first operation. They have installed outdoor plumbing - a tube that runs through her vein to her heart. It is called a Central line and is used to administer drugs and also to take blood. All the patients on the ward have one. We are at the General Hospital in Southampton, where there is a specialist centre for children's cancer. So, no need to go to London.

It's amazing how quickly you adapt - the idea of your baby having a tube sticking out of her body should horrify most parents, but we were on board with idea from that first night. The alternative (well, there isn't really one) is a cannula in her arm and constant drilling for blood - which she hated.

The operation was a complete success and two hours later she was dancing in her cot!

Russell

16 April 2011

D(iagnosis)-day

Paige has Acute lymphoblastic leukaemia (ALL). The formal diagnosis was important, even though we had been told nearly 24 hours before that she had Leukaemia, because there are different types. It could have been AML, which would have required a slightly different treatment (though not much different in the first few weeks). Also, it could have been something else - it is not unheard of for Leukaemia to be misdiagnosed. 

(Neither of us got our hopes up - Dr Walker was so sure and she has seen many cases like this.) 

The treatment for ALL is chemotherapy (in the first instance). The first phase is called Induction and consists of five weeks of various drugs, starting with steroids. After that she will have some time to recover (probably four weeks) and then another phase of drugs. And so on. For each of these phases she will be in the hospital 24/7. And so will one of us.

The thought of such a small person undergoing chemotherapy is frightening - I remember what it did to my mother. The list of drugs is mind-boggling, and they will literally destroy her immune system, leaving her very vulnerable.

Although the diagnosis has been confirmed, further tests will identify exactly what type of ALL Paige has. This will impact the treatment beyond the Induction phase. The results take up to 10 days, so stay tuned.

Russell

D-day minus one


The story of how we ended up in the Queen Alexandria Hospital on 12 April 2011 is a testament to my Wife's self-belief. Paige was sick in Trinidad back in March with a bacterial infection and the doctor, puzzled by two items on the blood test, advised that we get a follow-up test done on our return to England. By this time, Paige was back to her normal bouncy, fiesty (in the words of the doctor on call that night) self and the GP (quite reasonably) did not think that a test was necessary. Lisa insisted. The test was done at 1500 and by 1700 the GP called and told her to take Paige to the hospital. By 1915 Dr Walker told us that she was almost certain that Paige had Leukaemia (the formal diagnosis was given the next day). Her white cell count was 120 (normal levels are around 10) and she was dehydrated (they started a drip almost immediately).

How do you react to such news? Dr Walker came in to the room and told us to sit down - both of us declined: we are big, hard-backed adults. Nevertheless, it hit us like a freight train. Leukeamia is one of those illnesses the reputation of which precedes it  - and most us know little about it (for example, survival rates are upwards of 85%, on average). And yet...surely this only happens to other people? You know, in the movies?

And then, because we are both control freaks, we started asking all sorts of practical questions about treatment courses, likely hospitalisation periods, etc. Because practical considerations can distract you from all of the (unpalatable) possibilities. Plus, focusing on what you can control helps to take your mind off how actually how helpless we are in this situation. That's not true: we have a huge and important role to play in Paige's fight.

But we sure felt helpless that night.

Russell

Prologue


Dear Family and Friends,

We know that many of you are keen to be kept up to date with Paige's progress, and a personal email every day would be an ideal way of doing that. However, we think that a blog is a much more effective way of communicating our thoughts, fears and, of course, successes to a large audience. It allows you all to follow Paige's story and, indeed, to be a part of it. So please feel free to leave your own comments and pass this web address on to anyone who may be interested. 

Love,

Russell & Lisa