I've posted some photos from James's International Day at school that they had recently - he decided to dress up as someone from Afghanistan with a real Afghan hat that my uncle sent him - the rest was pure improvisation! We're off next week to Kwazulu/Natal for a holiday with Danielle's parents and sister to celebrate her mom's 70th birthday! Really looking forward to it. There's lots of chickenpox going round at the moment so trying to work out what to do about that... and then it's into the Christmas holidays!

After yesterday's good news that James's bone marrow has been given the all clear, we had an appointment with the Prof who is in charge of James's treatment where we were able to hear more fully about the bone marrow test and analysis. We appreciated that both Prof and James's pediatrician seem to understand how difficult this is for parents emotionally!

He explained to us that although chemotherapy for children with ALL (the kind of leukemia James has), the main remaining problem is that even after years of treatment, some still relapse... this is because even after the treatment, some residual diseased cells can still remain, which can then multiply... a lot of research is currently going into trying to distinguish these cells before a relapse occurs, but this has not yet been successful.

So when they saw these strange cells in James's bone marrow they wanted to check as much as possible to see if there was any evidence that they could be diseased. They consulted with colleagues at Red Cross Hospital as well (they see a lot more paediatric cases), and concluded that the evidence all points towards them being normal cells. Importantly, they look different to the original leukemic cells that James had, and they show no signs of abnormality.

So the conclusion is that James is doing as well as he possibly could be under the circumstances. The risk of relapse remains, and the next expected high risk period is when he finishes his maintenance chemo in just over 18 months time... it was a bit disconcerting discussing this possibility again, but that's the reality!

We also discussed James's liver - his liver enzymes keep on fluctuating; while they aren't at a dangerous level, they're not going to increase his methotrexate dose unless they normalise more. This explains why James seems to not want food at some times but not others.

We are so grateful to God for sustaining us through the past few weeks, and we're trying to take a deep breath to gather our strength for the reality of the road ahead. Next week we're going away for a long weekend which we're really looking forward to!

Today we heard from James's paediatrician that she got the final report on his bone marrow test - and he's totally clear! The cells that they saw on the previous test turn out under closer scrutiny to be Haematagones, apparently also known as Haemocytoblasts - basically they're immature cells, but they're not cancerous, so he's officially still 100% in remission! They're also not caused by a virus. What a relief it was to hear that news! We'll have our appointment with the Prof tomorrow where we'll be able to discover for more details, but it was nice not to have to wait till then!

We went out to the Spur afterwards to celebrate... thank you everyone who's been praying and writing and sending messages, it's been quite a crazy 3 weeks of waiting! We are feeling exhausted, but very very grateful!

PS - just to clarify, he does still need to carry on with his chemo as planned, but this now means everything is going according to plan, and he hasn't relapsed, which was the big worry.

James had his bone marrow test yesterday. He was incredible bouncy just before hand, but got knocked out pretty quickly by the anaesthetic!

It was really nice that there was another family sharing the room with us. Their daughter was having her last check-up bone marrow test five years after finishing her chemo for leukemia! Her parents told us that they also found "funny cells" in her bone marrow a few times during her treatment, but that they gave extra treatment and they went away (although it prolonged the treatment)... That was encouraging.

James's pediatrician explained a bit more: in the last test they found some blasts - abnormal cells - in his bone marrow. As I understand, they can't necessarily tell from that whether they're cancerous or not - but they regard them as a relapse if they reach a certain proportion (above 3%) of the bone marrow. They're wanting to investigate more to work out what they are, and this bone marrow biopsy will enable them to to a lot more detailed tests.

James's white blood cell counts and platelets were normal, which seems to indicate that this is probably not a full-blown relapse (they would expect them to be affected if it was).

We're going to see the Prof next week Thursday to hear what they find, but we'll probably hear before that if there's a serious problem ...

Last week, James had a bone marrow biopsy, which he has every three months. The hospital called us last Friday to say that they had seen something funny in his bone marrow, from the biopsy and they would like to do more tests. So, on Tuesday he had tests on him for TB of the Bone Marrow, CMV virus and Glandular Fever. The tests have all come back negative and so the doctors have said that they want to do a bigger bone marrow biopsy than usual on James to see what is going on with him. It is tomorrow morning at 8am. We would love some prayer - for peace and grace and healing. We have been trying not to react too much until we know for sure what is going on.

Some other news...

James loved school last term but coming back after the Easter break he has been incredibly anxious about it. It hasn't helped to have lots of public holidays and some time off for medical things which have made it very stop-start and not given him a chance to get used to it again. We've found this very emotional - his teacher has been fantastically helpful.

We have had my parents here this week and we have had a lovely time together. It has been such a blessing to us (Grandad did his famous making of the boats for the kids! Charis is very proud of her pink boat!!) We all felt so sad dropping them off at the airport this evening!

After last week's liver troubles there's been a lot of emotional up and down - waiting to hear whether James could still have the Methotrexate, and pondering the consequences of stopping it (with a risk of relapse) or the potential damage to his liver of continuing it.

Today we had a very helpful appointment with the Prof in charge of his treatment. He has spoken to his colleagues overseas who deal a lot with paediatric leukemia, and gone through James's case with them. They said that their practice is to continue the Methotrexate in spite of the raised liver function tests, but to keep monitoring the liver closely. They would only consider stopping if the Bilirubin levels go up (James's have never been a problem) or if the liver becomes enlarged (James has so far had no sign of this). In their experience, in every patient they've had with these liver symptoms, after the treatment is finished the tests go back to normal.

In the near future this means James will:

• have his liver tests monitored every second week (along with his normal blood tests)
• see his paediatrician every two weeks instead of once a month
• have an ultrasound every two months or so
• go back onto Methotrexate, and they will gradually increase the dose to the normal levels

This is good news for us because the alternative of dropping the Methotrexate would have definitely increased James's risk of relapsing. So we are grateful. However, it is likely that James will have to deal with ongoing nausea and tiredness if his liver keeps on as it has been, which has been very difficult to deal with. His eating has improved considerably with being off the Methotrexate this last few weeks. The prospect of him being nauseous and struggling to eat for the next two years is quite scary!

Last month James also went to see a specialist at the Sports Science Institute on Prof's recommendation, to see if there's anything more to be done about his leg pains and falling which continues to happen intermittently. He was incredibly excited because he met someone who trains with the Stormers rugby team. This doctor in turn referred us to a physio who happens to be a friend of ours from hospital! She and her colleague assessed James and said that he has good co-ordination and muscles except that he has low muscle tone in the core (trunk, shoulders and thighs). So her colleague's going to come to our house and help us with exercises etc that could help him.

Last week James started feeling a bit nauseous around food again, and so we asked them to test his liver condition. (This is after his liver apparently recovering from his two episodes last year). The results showed that his liver is struggling again - this time, only one of the four tests was abnormal, but it was 10 times the normal level. This was apparently a fairly clear indication of drug-related liver problems, and so we were told to not give James his weekly Methotrexate this week and then to test again. Today he was tested and the level that was high has dropped significantly, which seems to strongly indicate that his liver is not handling the Methotrexate.

This is (as his pediatrician said) "unfortunate", as that is one of the three regular chemo drugs that James gets and an important part of his treatment. We don't really know what the options are from here and are waiting to hear more from the doctors - basically whether they have to discontinue the Methotrexate permanently, whether there are any alternative drugs, and how likely this is to affect the success of the chemotherapy. We'll discuss this with the doctors over the next few weeks...

In other news, we're getting used to the new daily routine of James going to school and he's doing well there. David and James had a great time at the Jubilee Fathers and Sons camp (they just went through to Palmiet for the day and swam in the lagoon - both James and Charis are getting to be real lovers of swimming!) All four of us went away as a treat to a farm outside Montagu for the weekend (and saw the most incredible starlit night with no light pollution - the kids had a fantastic time playing with the animals and we came back with huge butternuts and vegetables etc) and we're keeping on rethinking priorities in life!

James had a fantastic first day at school today. A bit nervous (the butterflies in his tummy meant he didn't eat much breakfast), but when we went to fetch him he came running out saying "I love school!" It's the honeymoon phase but it's great to start off so well.

Charis had a fun time with Danielle at Rhodes Memorial while he was there which was great; before she left Mama Mavis got a fright from a gecko in the bathroom; Charis and I went to rescue it and in the end she caught it (by accident I think) in the bath mat and was very proud of herself.

We've uploaded photos from the first day (as well as a few from saying goodbye to Andy and Louise and Mia at the airport)

The world awaits (more photos here...)

It's been a month of refocusing and recovery...

Danielle and I have still felt lots of residual stress from November and December ... I've been struggling to sleep very often and we've both been tired ... Positively we feel like this whole period has pushed us to think through what's important in life and again, and actually prioritize what we need to like never before. Putting the big stones in first - for us that means time with God in prayer and the Bible and worship, quality time with each other and the kids, and having time set aside to planning and decision making and sorting out finances (the things we naturally avoid), as well as good time with friends and family. This has been an encouraging process - we're engaging with life in a new way, and we know that in the long term it'll make a great difference to how we live. One step at a time.

James is starting preschool tomorrow - five mornings a week! It's a wonderful place run by an amazing woman - just 2 classes of 8 kids each, and she has a special place for children going through health issues so she has some understanding of the kinds of challenges he has been facing... He's a bit nervous but mostly excited (when we visited the school with him he was surprised that there were no desks to write exams - in his head school was school and he's heard about exams from our matric friends...) This is going to be a big adjustment to the daily schedule. One implication is that hopefully Charis will have good quality time with Danielle in the mornings - something she's lacked.

James's liver has been a lot better over the last two weeks - there's still discussion about whether it was caused by his drugs or a virus - he's stayed off his anti-convulsant and they've adjusted his chemo slightly, and are investigating what they would need to do if it turns out to be the chemo that's the problem (this could be fairly serious if it developed).

It was also sad to say goodbye to Anni and Richard, Debbie and Jonny and Sammy (going back to Joburg and Bedford), and then Andy and Louise and Mia (moving to the UK). James and Charis really bonded with Sammy and love Mia (as well as the grownups!) so this was hard for them. (We're buying Andy and Louise's car through a deal with my work, which is great, but no compensation!)

It's been quite a week in the Fraser household, featuring James's liver issues, David going to Joburg for the day on Wednesday and Charis being taken for a precautionary blood test to make sure she doesn't have leukemia!

After visiting the gastro-enterologist to check out what's been happening with James's liver, he recommended discontinuing his anti-convulsant (Epilim) to see if that would help the liver recover. But when they got the blood test results the next day, they found that his liver condition has already improved remarkably! Basically all but one of the enzyme levels were back to normal, and the one that wasn't had improved a fair bit as well. James's paediatrician expects that it should come back to normal without changing his drugs, so there's a bit of a debate now as to whether to stop the Epilim or not - his doctor thinks it was probably a transient viral hepatitis (but not the standard Hep A or Hep B)

Since Sunday Charis has been complaining of pains in her legs and on Sunday particularly she was falling over a lot. With those being some of the symptoms that James had in his legs that led to the leukemia we were obviously nervous! So on Wednesday when James had his appointment with his doctor, Danielle asked her what we should do about Charis. She said for our peace of mind it's best to test, so they went straight off and had a blood test! Charis handled it brilliantly and didn't even cry and James was a great support with all his experience of having needles!

We got her blood results later that afternoon and Charis is clear which is great... the only abnormality was that her white blood cell count was even lower than James's which has been low - this apparently means that she's probably had a viral infection recently.

Charis has been struggling a lot and it's hard to tell how much is emotional and how much is her not being well so it helps a bit to know she has been sick. James has also been quite discontent and struggling - he seems to have perked up a bit as his liver seems to have improved... We do wonder if we've all had a virus and that's why we haven't been well. Whichever way we've felt very stretched both physically and emotionally! Discipline with sick and struggling kids feels like a hard balance to get right...

On the positive side both James and Charis have grown up so much recently - Charis is talking away and her vocab is incredible. James is getting all responsible and helpful and ready for going to preschool next year!