Good News

Just heard that I've got flight reservations to go home for Christmas and New Year. I'm pleased as punch to be spending the festivities with Kezia, Jaime and Nanda! Leaving here on 23 December and arriving back on 6 January.

There's only one flight a week direct to Europe so you can imagine that at this time of year reservations are a bit difficult. At first there was no place on the return leg but my friend L. pulled it off! Many thanks (again!).

Going Home

At the beginning of the fifth week, we were allowed to go home. Not back here! But to the rented house. Now Kezia was to start the next stage of treatment as an out-patient. The hospital would provide transport and an interpreter for Nanda.

The new home

What a relief to get home. The coming days were filled with orienting Nanda – local shops, down town, money, buses, bank, switching on the central heating, the gas fire (we don't have such things back here!), paying the rent, the bills.

A brief respite before we started the second stage of treatment - “Augmented BFM Consolidation”. Particularly intensive – but I'll talk about that in a medical post.

We also had visits from our social worker T., the Macmillan Community Nurse from the hospital A., and the local health worker C. C. has helped us out a lot in the last few months.

Immigration again – “No Recourse to Public Funds” on Nanda's new two year visa (and later Jaime's). I'm probably putting us at lots at risk with the immigration authorities here by discussing such things on this blog.

So let's hope no IND officials or racists read this ...

So we registered Nanda and Kezia with the local NHS doctor - General Practitioner/GP in the UK (our family doctor). At the same time the hospital (RMCH) advised the GP not to treat Kezia – everything to do with Kezia must go with the hospital - obvious.

Recently there was an item on the BBC news website that GPs (through the British Medical Council) refused to be policemen for the Immigration and Nationality Directorate (IND) of the Home Office for illegal or abusing immigrants.

On the IND website it advises what “No Recourse to Public Funds” means, seemingly, the NHS, Child Benefit (it's for a UK child, not a foreign mother for godssake) etc etc – but not education. So we have been able to put Jaime in the local primary school. If doctors are refusing to monitor immigration status, can you imagine teachers ...!

I must say, though, that the FCO through the Embassy and the IND have bent-over-backwards to help us. I don't blame them in the immigration requirements – they are, after all, following the regulations, laws and Acts of Parliament which they are duty/job-bound to follow.

Meanwhile, I needed to come back here. My job is here, our house is here, Nanda wants to come back here, I want to stay here ... and I have to earn some money to keep them in the UK.

Especially, as an IND requirement is that they (Nanda and Jaime – Kezia is a Brit) don't want to stay in the UK indefinitely and we can only prove that by me, a UK national, saying I don't want to stay in the UK indefinitely. Kafka?

So on Friday 7 July I set off back here.

Kezia, Baby and the Menagerie

UKALL 2003 - Regimens A, B and C

The UKALL 2003 trial initially chooses your child's treatment regimen based on a series of diagnostic tools - prognosis factors based on previous experience and lab tests. Thus ... I will try to reinvent the wheel as I promised not to do previously.

If your child is under one year old, s/he will go onto another protocol trial.

If your child's ALL is effecting the White Blood B-cells (see the post on Haematology), s/he will follow a different protocol developed by the UK Childhood Cancer Study Group (sorry – I don't know any details right now). UKALL 2003 is only involved with T-cell ALL.

If the child has any of various genetic abnormalities which have been shown to put the child at a higher risk of later relapse, then s/he will automatically be put on Regimen C.

If your child is older than 10 years old, then s/he will automatically be put on Regimen B.

If your child has an initial White Blood Count (i.e. mostly malformed T-cells) greater then 50 (x 10⁹ per litre), then s/he will go on Regimen B.

Kezia “passed” all the above (phew!) except the last one. So she went on Regimen B. I was confused at first between Regimens B and C – don't worry, in the first stage of treatment Regimens B and C are the same. They differ in later stages of treatment.

They then look at the number of lymphoblasts in your child's bone marrow at Days 8, 15 and 28 of the initial treatment.

If at Day 8 and the child is on Regimen B and the blood-producing cells of the bone marrow show more than 25% lymphoblasts, then s/he is automatically transferred to Regimen C. S/he is also thus classified a Slow Early Responder (SER). This was the case with Kezia (and by the way H.).

If your child is on Regimen A and there are more than 25% lynmphoblasts at Day 15, then s/he will go onto Regimen C.

If your child is on Regimens A or B and has less than 25% lymphoblasts at Days 8 or 15, then s/he will stay on the same Regimen (course of treatment).

If your child is older than 16 years, s/he will continue on Regimen B regardless of the Bone Marrow results.

The next bone marrow test is at Day 28 – the end of the Induction phase. If your child has already been assigned to Regimen C, this will not make any difference.

However, if your child is on either Regimens A or B, then the 28 day count can decide the future course of treatment. If your child still has between 5% and 25%, s/he will go onto the Regimen C treatment. More than 25% s/he will stop being part of the UKALL2003 trial and will be treated under another protocol.

Less than 5% of lymphoblasts, your child will be allocated randomly to Regimens A or B.

This is really one of the objectives of the trial. As I said before, Regimen A is the least intensive/aggressive and Regimen C is the most intensive/aggressive. The drugs for killing the leukaemia attack both good and bad cells. They want to see if a low-level of leukaemia, needs less amounts of drugs to kill the disease. They cannot take too many risks with our treatment, so only children with less than 25% at days 8/15 and less than 5% at Day 28 will really go on to experiment between Regimens A (less aggressive) and B (more aggressive).

I'll about the differences between the regimens in a later post.

Shingles

A. writes to tell me today that her daughter now has shingles. Get well soon H. Courage A. and S.

Shingles is caused by the same virus as chickenpox (varicella-zoster). Whilst children get chickenpox, adults get shingles. Immuno-depressed people, such as those with leukaemia, are particularly prone to infections such as this.

Will be thinking of you.

Medical Stuff - Part 2: UKALL 2003

We were asked right at the start if we would agree to take part in a research/clinical trial known as UKALL 2003. It has its own website (linked to on the right) where you can find the entire treatment protocol, flowcharts of the different treatment regimes and other information.

I'll go into greater details about the objectives of the trial in a later post but basically it aims to evaluate whether different treatment regimes will have a effect on full recovery/later relapse rates.

The prognosis for successful treatment is now fairly good – around 80-85% of young children will not suffer a later relapse. There are a number of factors that can influence successful outcome. Being so young and being female make Kezia's prognosis better. The gender difference means that boys receive 170 weeks of treatment and girls 118 weeks.

There are three regimes – A, B and C. A being the least intense treatment regime and C being the most intense. The regime a child follows depends on a lymphoblast count in the bone marrow on days 8 and 15 of the first stage of treatment + some other factors, such as whether lymphocyte B-cells or T-cells are affected (B-cells s/he comes off the trial and follow different treatment – sorry, but I know nothing about it).

Kezia had a bone marrow lymphoblast count of > 50 (x 109/L) when she was admitted so she was automatically assigned to Regimen B. As her count was still greater than 25% at Day 8 she was then assigned to Regime C. What is called a Slow Early Responder (you got it – SER) as opposed to a RER (have a guess! ... Rapid Early Responder)

Her initial very high WBC/malformed lymphocyte counts indicated that she'd probably had leukaemia for a few months. We'd noticed symptoms but neither the doctors here nor ourselves could interpret them. We had noticed some unwillingness to walk, in March she fell down the three steps to our veranda, twisted her ankle, leading to even more unwillingness to walk – we didn't know that an effect of leukaemia was pain in the soles of the feet.

Although her lymphoblast count at Day 28 showed full remission had occurred, the trial protocol specifies that the treatment regime is decided based on the Days 8 or 15 lymphoblast count.

I won't go into all the variables that decide which Regime your child will follow –I would be reinventing the wheel as a square - please consult the protocol documents on the UKALL 2003 website and speak with your doctor.

However, I will say that the massive increase in recovery and survival rates over the last 30-40 years has been due to children participating in such trials and that we also should participate for the sake of future sufferers of ALL and in the hope that their opportunity is even greater than that of our own children.

Payback.

Photos

The Blogger server is still not allowing uploading of images - so I'm hosting the photos elsewhere. Photos have been added to some of the previous posts.

Medical Stuff - Part 1: Haematology

Ok, I'll take the plunge and try to explain a bit about what Acute Lymphoblastic Leukaemia is and how Kezia is being treated. If I get anything wrong, and any of our readers are in the medical profession, please correct me through the Comments or by email.

First we need to take a look at blood. The study of blood is haematology. Haematologists are doctors who know a lot about blood. If you don't understand a bit about blood, you won't understand much about leukaemia.

Blood cells can be divided into three types: red (RBC), white (WBC and also known as leucocytes) and platelets (PLT). You'll see these abbreviations on lab reports so I'll start using them now.

When you whizz blood around at very high speed in a centrifuge, it separates out into these three types: white cells are white, red cells are red and platelets are a kind of bilious yellow.

Red cells are important for carrying oxygen and other nutritious things round your body. White cells defend your body against all the millions of things that would like to attack and eat you. Platelets are there to clot your blood if you cut yourself – those nasty scabs form because of platelets – if you didn't have them, you'd bleed until there was no blood left at all - which means you're dead.

The important ones as far as leukaemia goes are the white cells, and, sod's law, there's a bunch of different types which we need to get to grips with.

• Neutrophils (MNEUT): these constitute around 65% of the WBCs. They defend you against bacterial infections and are the first ones to respond to an attack. Kind of like suicide bombers in that they die during the attack and turn into pus.
• Eosinophils (MEOS): these constitute around 4% of the WBCs and defend against parasitic infections.
• Basophils (MBASO): less than 1% of the WBCs. These are responsible for responses to allergies and release histamines causing inflammation.
• Lymphocytes (MLYMPH): around 25% of WBCs. Divided into further sub-types.
• B-cells - these make antibodies that bind to the attackers enabling their destruction. The arms factories.
• T-cells - CD4+ (helper) cells coordinate the immune response – the generals telling the different troops where to go. CD8+ (cytotoxic) cells are the SAS of WBCs that kill virus infected cells. Natural Killers are the MI6 of WBCs. They can kill infected cells that are displaying a signal to the other troops not to kill them (hello I'm friendly! e.g. cancer cells).
• Monocytes (MMONO): 6% of WBCs. These are similar to our MNEUTs but get to live a bit longer.

All of these are produced in the bone marrow. And they all derive from Hemopoietic Stem Cells (HSCs), also known as Hemocytoblasts. These cells split and form precursors of all of the above as well as the precursors of RBCs and platelets. The immediate precursors are known as blasts which then develop into the -cytes above before being thrown out into the blood to do their work.

In Acute Lymphoblastic Leukaemia something goes wrong with the HSCs. They start producing more and more lymphoblasts which never grow up into lymphocytes. The lymphoblasts take over all the space in the bone marrow allocated to the the other types of blasts – red, white and platelets. This gives rise to low RBC levels (anaemia) and low platelet counts (danger of bleeding).

They also head out into the blood. As they have not matured into lymphocytes, they can't fight the attackers as they should. Hence people with ALL are prone to infections.

Initial diagnosis is by a blood test - positive results show a large number of lymphoblasts. This is then confirmed by a bone marrow sample which, if positive, will also show a large number of lymphoblasts.

Other clinical signs are an enlarged spleen (WBCs accumulate here), anaemia (lack of RBCs) and a reduced platelet count.

The First Four Weeks - Part 3

While all this was going on at the hospital, I also had a lot to see to on the “outside”.

Kezia's passport, Nanda's visa extension, a new driving license (I only had the old-style green one) and, above all, finding a house to rent.

We preferably wanted something near to my brother and sister-in-law. My brother got the local paper on Saturday – there was a fully-furnished back-to-back terrace 30 seconds round the corner! We went and peered through the windows – looked ideal! Monday was a bank holiday so first thing Tuesday morning I rang the estate agency and said I wanted it even without a viewing! Arranged a viewing anyway and gave our sob-story. There were other interested parties but we got it!

It's ideal – down a short alley off the main road. A late 19^th century terrace of five houses with a small garden directly in front of the house. Great for kids with no traffic to worry about. Fully-furnished, as I said, and the previous occupants had even left a hi-fi which was not on the house inventory!

Being tucked away as it is, the only disadvantage is that no taxi driver has ever heard of it! We have to give the address of the back-to-back behind us on the main road.

After signing the contract, I then had to set up the electricity, gas, telephone, TV license and council tax. Blimey everything has changed from when I last lived in the UK – now you can do it all over the phone and pay at the local shop!

One of my sister-in-law's sons donated a television, the other a mobile phone. Necessities such as bedding, pots and pans etc had to be bought.

Meanwhile at the hospital we were being prepared to leave and for Kezia to continue treatment as an out-patient. The major preparation was to train us in the administration of medication via the Hickman Line. Two training sessions and we were deemed competent. It really needs two people – one to clean the line, administer the medication etc and one to hold Kezia and check the first person is doing it all correctly. So when we finally got home, and as I would be coming back here, we trained my brother, sister-in-law and one of her sons on how to do it as well.

Immigration

You may have been wondering why Jaime hasnn't figured much in this so far ...

First, Jaime didn't come with us back in May. I'd booked a ticket for a week, Nanda and Kezia for a month. Little did we know ... We employ a really trustworthy guy (H.) to look after the land (smallholding-size: 60 m x 60 m) around our home and we asked him and his family (wife K. and small daughter J.) to come up and live here, look after Jaime and the house. They did an admirable job! Thanks! As they live with Mum, brother (+ ...), sister (+ ...) in a very small wooden house it's a bit of a holiday for them (although living on my own now concerns everyone – it's a far more “social” society than the UK).

Then, when we discovered it was leukaemia and the length of treatment (c. 2 years for girls, c. 3 years for boys), we had to apply for Nanda to stay longer than the initial six months granted at Heathrow.

Getting a passport for Kezia was not a great problem. Although I am Kezia's registered father, Kezia cannot receive my nationality if I am not legally married to the foreign mother – Margaret Thatcher's bloody 1981 nationality legislation! (If it was the other way round – UK mother, foreign father – no problem). Having discovered this early 2006, we got married on February 4 2006. (As you can gather formal marriage is rather against my personal philosophy!) Fortunately, the 1981 Nationality Act is “retrospective” so even though we married after Kezia was born, she still receives UK nationality through her dad. Now Kezia is the proud owner of British Citizenship and a UK passport! Not that she really cares right now.

Nanda was more complicated ...

The Embassy and the Passport Office had signed off on Kezia being a British Citizen. The Embassy had signed off that Nanda is my wife. However, to extend Nanda beyond 6 months, we needed: translated documents, birth and marriage certificates, bank statements (here and there), statements of income and contract length from my employer, proof of will return to country-of-origin (letter from my employer), letters from our consultant J. and social worker T. etc etc. Took a time but we got it.

On to Jaime ...

The embassy can only grant 6 month visitor's visas. Obviously, we wanted Jaime to get the same as Nanda. So first we had to wait until Nanda's 2 years came through. Then we had to send Jaime's passport and all the same documentation cited above to the embassy (in Angola as you will recall) who then had to send it all to the Immigration and Nationality Directorate in the UK. First difficulty was getting it all to Angola – DHL costs an arm and a leg if you don't have a contract with them. I rang my friend B. who works at the top hotel here to see if they had a DHL contract – no, but hang on a minute. An aunty of an employee, an Angolan judge, was staying at the hotel and returning to Angola tomorrow. I raced down to the hotel and she hand-carried everything to the embassy – I can't remember your name but many thanks!

The return leg was facilitated by JG, our hon British consul and a local businessman, who happened to visit Angola just as the visa came through.

I picked up Jaime's passport on 29 October and we were on the plane to the UK on 5 November!

Took a while and Nanda really didn't understand why it was taking so long when for her and Kezia it only took three days!

Again many thanks to L. at our local travel agency.

And many many thanks to the UK embassy in Angola who have been absolutely amazing throughout this ordeal.

You may wonder why I'm the only member of the family posting – well, Nanda and Jaime don't speak English (yet!) and Kezia's a bit too young to have mastered either the lingiustic or computer skills. If this blog survives, hopefully you will see entries from them in the future.

This weekend I'll try and get some medical info. written. Still can't upload photos. See you on Monday.

The First Four Weeks - Part 2

The staff at the RMCH are all kindness. Too many people to mention or remember.

But I would like to mention a few. First our consultant, J. He's marvellous. Takes his time to talk to you, explain the illness, the treatment etc. I quite quickly went and bought a couple of medical textbooks on haematology (blood) and oncology (cancers) so I could ask him sensible questions. Obviously, this gave rise to more questions as I tried to get my head around neutrophils, basophils, hematocrit etc etc and their significance in test results. J. takes his time to explain to you, at your level and without being in any way condescending. He really shows sympathy to what you and your child are going through. He has continued to answer my questions from afar. Thanks J. for your patience and kindness.

Secondly, our hospital social worker, T. Again >200% sympathetic. Bits of money here and there which she has arranged have really helped out. The social services at the hospital are contracted out to a NGO called Clic Sergeant (see link on right). They automatically give each new patient ₤200. Since she has found us bits of financial support from various sources. Always ready to listen. And helped out a lot getting letters written to support our immigration/visa issues. Thanks T.

The nursing staff are wonderful. So clearly love kids. Special thanks to H. (hope the pregnancy went well!) and E. You showed special kindness to us. You are allocated to a couple of nurses who meant to give you special attention, kind of mentoring you. Not sure this works too well given they work shifts, take leave etc. Anyway, all the nursing staff are great.

Other parents – we all tend to be a bit wrapped up in our own problems. However, we made special friends with A. and her daughter H. (who I mentioned briefly earlier). H. was admitted about a week or so before us and just before her 16^th birthday. Whilst Kezia's treatment has so far all gone according to plan, H. (and obviously her family) has been to hell and back. Every side-effect in the book and more. Medication-induced diabetes, blood clots in her legs, mucosis that has made her saliva green etc etc. Most recently contracted ankle tendons that have required her lower leg to be set in plaster. All this in addition to “normal” side-effects such as tingling feet, hair-loss and mood-swings. You are very very brave! A., you've been a wonderful support – just talking and sharing feelings has helped me so much.

Thanks to all of you! I will never ever hear the National Health Service be knocked again!

Each day would fly by. Bathing Kezia, breakfast, doctors' rounds, meeting J., meeting T., other specialists, taking temperature and blood pressure, treatments (pills, drips, injections), transfusions (blood and platelets), paperwork, interpreting for Nanda, lunch and dinner, laundry, visits from my brother and sister-in-law, phonecalls to/from family, playing with Kezia. And, above all, learning about leukaemia. A steep and rapid learning curve!

Parents are given blood test results but don't have an automatic right to see their child's entire clinical file. I summoned up the courage to ask about this, not wanting to make anyone uncomfortable that I had any doubt whatsoever about the excellence of the treatment Kezia was receiving. After asking the ward sister, I headed off to the Patient Advice and Liaison Service (I think that's what they call it). Apparently, if you want to see your child's file, you have to write a letter to hospital management. You will the be granted permission to see the file under supervision. You can request photocopies but pay for them. Later, I talked to J. about this and he said he'd willingly show me the file if I wanted. My confidence in him, his patience in explaining everything, led me to decide I really didn't need to see it right now.

At first we were allowed to take Kezia out in the hospital grounds. There's a nice garden with a small aviary with parakeets and budgerigars (donated and built in memory of a past African-origin patient) so we'd take Kezia down there. In the third week we were allowed to take Kezia out to the local park where we'd play on the swings and slide.

Kezia has never had a pushchair as back home the almost total lack of pavements and the numerous potholes make them pretty impractical. Well, Kezia has decided she ain't going to start now when it's much more warm and comfortable to be carried in the traditional African way on mum's back! Even after my sister-in-law brought her a beautiful bald black doll with her own pushchair! Kezia was quite happy pushing Baby around but herself – not likely. We managed it a couple of times but she was definitely not keen. The pushchair we have since bought remains the preserve of Kezia's menagerie of stuffed toys! In fact, whenever Kezia is upset, going on mum's back is a sure way to calm her down even to the point of sleep. The hospital staff were amazed.

See this link about African women and pushchairs

For some reason Blogger isn't allowing me to post photos today - will add some to this post when this is resolved.

Part 3 to follow

The First Four Weeks - Part 1

The first four weeks spent at the hospital are already becoming a bit of a blur – it's now five months ago.

On arrival we were settled in with tea and toast on the Borchhardt Ward. The next days were filled with consultations, tests, briefings and the first treatments. More needles at first. Kezia's veins were by this time getting very difficult to find. Sometime during the first week she had a minor operation under general anaesthetic with three objectives:

• Take a bone marrow sample to confirm what they had seen in the blood.
• Take a sample of spinal fluid – to see if the leukaemia had spread to the central nervous system and thus potentially the brain.
• Install a Hickman Line.

I'll discuss the treatment/medicine in a later post. But the latter, we'll deal with here. The Hickman Line is basically a tube that runs from a large vein feeding into the heart (the Superior Vena Cava going into the heat's right aorta for the technically-minded) and comes out at the top left or right of the chest. Its function is to allow medication to be administered and blood samples taken without the need to access veins with needles. You bet Kezia and ourselves were relieved!

In the initial stages after its installation much care has to be taken that the Hickman Line does not move internally. Each time medication is given through the tube, a little blood is drawn off to ensure the tube has not moved. This did in fact happen to Kezia and a couple of weeks later she had to return to the operating theatre to have it reinstalled.

Externally, a loop is put in the tube and the loop is taped to the chest. This is so if the child pulls on the tube, she pulls out the loop rather than pulling the tube out of the vein.

When not in use, the tube is capped or clipped to ensure that dirt or other foreign matter that might cause an infection does not get into the tube or body. In fact, tube cleanliness is of utmost importance and the tube is flushed with saline after each administration of medication or blood sample. When the child becomes an out-patient, parents are shown how to clean the tube. This is done on a regular basis whether or not medication is given or blood samples taken. Parents are also given a temporary clip in case the main clip breaks or fails. This must be carried everywhere the child goes.

Link to Wikipedia on Hickman Lines

Later in the treatment when medication is less intensive a Portacath will replace the Hickman Line. This is basically a silicon bubble (the septum) installed under the skin with a tube going to the same vein entering the heart. Medication is administered and blood samples are taken by means of a needle/syringe to the silicon bubble. Just a small pin prick to the skin. Advantages are a) the child cannot pull it out b) it's easier to keep clean.

Link to Wikipedia on Portacaths

Royal Manchester Children's Hospital #1

I'll say #1 as I'm sure I'll have more to say about this marvelous institution another day. I'll get onto the rest of our personal narrative later, and also details of treatment.

The Royal Manchester Children's Hospital (RMCH) is divided into two branches – Pendlebury and Booth Hall. Don't know the latter but the former dates back to 1873. (There's a plan design on the wall of the cafeteria as well as a letter of praise from Florence Nightingale). Clearly, it's been added onto as time has gone by – but it remains a warm Victorian masterpiece. (Probably would be great for urban adventurers – but maybe you should wait until it closes). I wish I knew who the architect was.

Unfortunately, it comes with all the problems of ageing Victorian buildings – vermin. Manchester now plans a new mega-complex hospital which will replace the two children's hospitals and much more. No more comment right now as I don't know much more about it. But it seems a shame.

It's a children's hospital – half creche/kindergarten/nursery school (whatever you call it)/half hospital. The medical equipment seems to get hidden behind all the toys, paintings, balloons, posters, awards for being a brave patient, TVs, Playstations, pedal-cars, dolls, stuffed animals etc etc. You name it – if you're child wasn't sick, it would be their paradise.

Older children must feel out of place. The hospital accepts upto 16^th birthday. The hospital recognises that older children, or I should say young adults, have different needs and get their own room.(H. who you will meet later on – filled her room with school photos, received visits from teenage school colleagues, teachers etc). The hospital has its own school, so illness permitting education can continue including taking public examinations. Clowns visit, activities organised, music sessions etc etc.

First impressions – everyone is on first name terms. From the top consultant thro' to the student nurse thro' to the porter. The whole philosophy of the hospital is to make us at ease as much as possible. Stressed-out children are not going to be helped by stressed-out parents.

Each ward has a parents' suite consisting of three or so bedrooms, a kitchen and bathrooms. So during the four weeks we were there I would sleep in one of these and Nanda with Kezia on the ward. During the initial admission period in the hospital, both parents are allowed to stay - which in case was a godsend as Nanda doesn't speak English. Later admissions only one parent can stay - although I think if there were special circumstances, such as language, they would probably be flexible.The ward itself has a kitchen which parents can use when patients' meals aren't being served. There are also clothes-washing facilities, a playroom, a large outdoor play space (with tricycles, pedalcars etc) and of course bathroom/toilets for the patients.

Patients get three meals a day with a reasonable selection, parents make their own or use the cafeteria.

(Photo courtesy of the BBC).

On the plane

On the plane to Portugal. This is perhaps the only time we've had our photo taken by a professional - thanks Dong Lin! Kezia likes Teletubbies.

How it all started

First a bit about us - we are a family of four. Myself (obviously), Nanda (my wife), Kezia (our daughter - now 2 1/2) and Jaime (Nanda's 7 year old son). We live in a small offshore central African country, beautiful and poor. But not as poor as some.

Kezia was very sick at the beginning of May and had to go stay in hospital twice. After a second blood transfusion on 16 May we were told they didn't know what was wrong, but obviously very very sick and we should get her out of the country urgently. Many thanks to Drs I. and B. who knew something was seriously wrong but lacked the diagnostic tools to find out it was Acute Lymphoblastic Leukaemia (more on that anon).

My nearest embassy is in Angola so I could hardly get Nanda's passport to Angola and back for the next flight out on the Saturday and we hadn't yet applied for a UK passport for Kezia. Anyway, the embassy were terrific and faxed Heathrow and the embassy in Lisbon (with a copy to us) explaining the situation, yes in our opinion Kezia is British and to let us in.

The local travel agency got us tickets on the Saturday 20 May flight (there's only one direct flight to Europe per week) and said we could pay on our return! (You wouldn't get that treatment anywhere else!).

At the local airport the immigration authorities didn't want to let us on the plane as Nanda had no visa. Fortunately the UK hon consul was there and smoothed the way.

Again at Lisbon airport they didn't want to let us board the next leg as Nanda hadn't a visa. Showed them the fax, said what are you going to do, Nanda hasn't a Schengen visa, there's no return flight for a week, lock her and sick child up for a week? They finally relented.

At Heathrow yes they had the fax, no problem, we'll give Nanda 6 months straightaway even tho' their return ticket is for a month. You never know ...

My brother was there to meet us. Another 3 1/2 hours up the motorway and we finally arrived at his home about 3 am on Sunday and crashed out. On awaking late morning and after breakfast down to the emergency room at the local hospital.

After not too long a wait, up to Paediatrics. Quiet - they try and send most kids home ay the weekend. Needles, more needles ... Kezia screams and screams. She'd suffered so many needles back home in the recent past. Me, Nanda, the nurses have to hold her down to get blood samples.

After two or so hours, Dr. K. (sorry I haven't written to thank you) tells me he suspects Kezia has leukaemia and that he wants us to transfer to the Royal Manchester Children's Hospital. I don't tell Nanda immediately but go with my brother to get our belongings. My sister-in-law stays with Nanda and Kezia.

I sob in the car. We get to my brother's house, I want a strong drink, he won't let me. Pull yourself together.

My mind is in turmoil and we return to the hospital. I have to pull myself together and I have to tell Nanda - how?

I tell Nanda. She breaks down. Sobbing and sobbing. She doesn't really know what leukaemia is. I have to explain it's a form of blood cancer (how little did I know then). I tell her to be strong, she has to be strong for Kezia.

At about six the ambulance arrives and transfers us all to the Royal Manchester Children's Hospital in Pendlebury.

The story starts.

The First Post

This blog will be about our experience of living with a small child, our daughter, with Acute Lymphoblastic Leukaemia - we hope it will provide comfort and information to others in similar situations to our own as well as being both therapeutic for ourselves and a record of what will be surely a profound and sometimes traumatic few years for us.

First real posting shortly.