1 year down, 1 to go

Well, this posting and update is a week late, which undermines its significance somewhat, as it has now been over 12 months since Abigail received Emily's marrow. Amazing how fast and yet how slow that time has gone. We have a good excuse, as I missed the blog on this pivotal moment because we were away on holiday. We're just back from a week of fishing, relaxing and generally catching up with Abigail's Aunt and Uncle over from the UK and a whole swag of grand parents.


The fishing was relaxing, but as always there were patience issues, with both girls expecting to catch a fish about 2 sec after the bait hit the water. Sand castles soon became more interesting!

However everyone had a really good time, and we were able to see lots of nice things. At the end of this though everyone, including the big kids, were pretty tired...


Other than that the other big news was that Abigail has had her first haircut. Her hair wasn't long enough before treatment, so this was another big day and milestone in her life. She has steadfastly refused to get it cut for weeks, but then suddenly decided that she was big enough to get it done, so we went straight to the hairdresser to get that fringe out of her eyes.

Sadly this new development of hair has also resulted in demands for very complicated hair styles such as pig tails. I'm sure buns are just around the corner, closely followed by the dreaded plaits. I'm really going to have to improve my hair dressing skills!

Good news medically is that all of her tests have been good, and that she can now have chicken pox vaccine and a couple of others to bring her back to what she should have received for her age. So, so far so good. Boring to keep reading perhaps, but it never gets old to type it!

Another milestone

Well, the same old story, but it is a damn good one, in that there is no news to report, other than steady improvement in all that matters. Lots of new tests for testing the effectiveness of immunisations, checking teeth, bone density and as always blood composition, but while we are awaiting many of these, the ones that have returned have all been very good, better than or as expected.

As you can see Abigail continues to do very well and we've managed to get out and about a bit more. Some very big milestones recently when Abigail turned three and her sister five. Very nice to celebrate such worthy milestones. As part of their present they went to see a Disney on Ice show, and got all dolled up for the event:
Needless to say from the poses at left you can guess who bought the fairy wand and who got a soft toy in the guise of Stitch courtesy of their Uncle and Aunt's present. You might also guess which cake belongs to who:

Everyone had a great time at their parties on on their big days, with lots of great presents that both girls enjoyed:


Nothing really major in Abigail's world at the moment. Big news is that she might finally come off the anti-viral meds soon, meaning NO medications other than a simple dose of vitamins each day. That will certainly take some getting used to. She still isn't a great sleeper (we've given up on that at this point I think), and eating at times can be a bit of a struggle as below.

But, as always, no news is good news. In the meantime we shall let you all know of results as they come in. Thankfully, we are all faring better than the duck. I haven't worked up the courage to ask the girls what he did wrong...

Immunisations

Not much to report this time, thankfully, other than another immunisation negotiated. This time around a little cranky, but no fevers. She had another bone marrow aspirate and blood tests taken on the Monday, with 3 immunisations the following Friday, so increased crankiness was probably fair enough by Friday afternoon. By all reports however it was a pretty special patty that she threw when one of her favourite toys was left at home!

Unfortunately at nearly three Abigail is definitely starting to reach an age where she understands what is, and more importantly, what is about, to happen. Add finger pricks to the menu to get blood tests now that her lines are out and hospital is less of a fun place than it used to be. As we all know she can be a 'very strong spirit' at times (don't know where she gets that from)... But, Wiggles/Dora/Barbie band aids seem to cure all manner of ills. She has also re-discovered chocolate this Easter and beyond, so that always helps. No matter how full she is, there seems to be room for yet another piece of chocolate (don't know who she gets that from either...).

We won't know the test results for a month or two at best, but her blood titres were all very good, and her general health is great. She has recovered her weight from when she was ill earlier in the year and is again putting on weight and eating well. So, as always, no news is good news, but she is doing well and the major hurdles for this month are now behind her.

Doing better

Abigail is now doing much better, after spending Wednesday night in hospital with fevers. Seems that beginning her immunisations a week after having some sort of virus/infection was a little too much for her. Her white cell count was over 15 and neutrophils above 7, so a bit of a personal high there for her immune system! The doctors think that the high level of these had her 'primed' to respond to any perceived infection quickly, and perhaps this lead to an over enthusiastic response to the vaccine. That said the flu shot she had last year also sent her into fevers, landing her in the ICU, so it might just be that this is the norm for her system.

Luckily this time around things were not as bad, with temps of 38+, but only 48hrs of anti-biotics and one night in hospital sufficient for her to recover. She was still very flat however, and had problems keeping much of anything down. However, yesterday things improved markedly, so hopefully she is over the worst of it now. Some ground now needs to be made up, as she has clearly lost some weight, but is now feeling a little better as you can see.

Bad news is she'll need another two shots over the next two months, so we're hoping a night in the clink doesn't accompany each one. It is a good reminder however of how sensitive she is at present, and a good chance to remind all that might visit that now is a good time to get your own flu shot up to date.

Day +200

Above: Running amok in the backyard and pretending to be the Easter bunny, carrot included.

Fantastic news today as, unbelievably, it is 200 days since transplant! The time has simply flown by, and looking back through some of the old photos Abigail has clearly come on in leaps and bounds. All indications are very good and she is clearly feeling a lot better, so much so that the terrible two's are starting to put in a belated appearance. Stubbornness is not, apparently, confined to her contempt for illness...

Sadly, we didn't manage to get away for a quick break, as one of Emily's friends at pre-school passed on her virus on Friday. By Monday we were all sick so no trip on the Tuesday. We did manage to have a relatively quiet week at home though, and by today everyone is doing pretty well. Abigail developed some croup with the virus, and we had to get a swab taken in case things got worse, but thankfully it seems to have all resolved itself now. Megan and Abigail still have a bit of a cough, but other than that all is pretty well.

When the weather warmed up some we went to a local farm on the Sunday so that the girls could have at least a little bit of a play. I'm sure we came across as damn city clickers, given that we changed clothes and shoes afterwards, wiping everything down with anti-bacterial wipes! Still, better safe than sorry.

Abigail loved feeding the chooks, but was less sure about the horse-riding, saying it was 'too bumpy' and bailing out very early on.

Emily on the other hand wanted to ride the pony (Jellybean) all day, and impressively held on by herself the whole time. She clearly loved it, but did have the good grace not to ask for a pet pony for at least an hour afterwards. We also managed to finally indulge Megan's craving for a devonshire tea, and clearly Emily loved the scones too. So, not really the week we'd envisaged, next time I think we'll avoid telling anyone we're going until about an hour beforehand!

Em enjoying a scone and chocolate milkshake (the salad sandwich she had beforehand is just out of camera shot...)

Latest tests all good

Apologies for the delay in updating the blog, has been a combination of no new news and busy times at work and home.

Good news is that the latest bone marrow aspirates and chimersism tests have both returned with the desired result: still in remission, no sign of leukaemia returning and basically only Emily's cells in her blood (i.e. the transplant continues to be successful). So, exactly what we wanted to hear. Health wise she continues to improve, and has all but been weaned off nutritional supplements. Sleep is slowly improving for all, and her immune function tests were all positive. She will also begin getting her immunisations in the next month or two, hopefully before flu season begins in earnest.

Her results were deemed good enough that we can start venturing out of the house again. She has been to two sessions of Gymbaroo now, which lets her play with some kids her age and do some singing, dancing and play on climbing equipment. It also means that we can now do simple things like go to the shops briefly if it is quiet, so slowly returning to some sense of normality. We are also taking advantage of this by taking a break next week and going on a small holiday. We're only going an hour up the road, but will be good to have a break and go on a proper holiday for the first time in well over a year.

Some drama but CVL is out

Abigail is now 129 days post-transplant, and continues to do very well. She has been off the immunosuppressants for a while now, with no obvious side-effects. Indeed she has continued to put on some weight, has an ever increasingly red and thick head of hair as well as her usual boundless enthusiasm for most things in life. Some small side-effects of the drugs, such as increased body hair, have also abated. I'm sure that most people passing her in the street (well, if we were allowed to go into the street) would simply see her as a kid with a short hair cut.

The one giveaway to interesting times has been the ever present central venous line, however this too went on the weekend in an unscheduled visit to the hospital. It has previously been repaired, and this time managed to fail in the shower, leading to fun and games trying to clamp the lumen, clean the site and convince both girls that shower time was over and they needed to get out! The docs decided to remove the line rather than risk infection by leaving it in, so after a night in hospital she had the CVL taken out on Sunday morning. After some post-op anti-biotics she was allowed to go home. Not an ideal long weekend, and a bit of a shock to all to be back in the clink again, but it all worked out in the end.

It is taking everyone a bit of time to get used to the CVL not being there, and we certainly won't miss the dressing changes and line flushes (though true to form Abi never complained about these, with the challenge getting her to sit still from fidgeting rather than complaining!). It is also a big psychological change, in that the last crutch, for us at least, has now been removed. But, in many ways, this is a nice bookend on her treatment and a good start to the new year.

Finally Christmas was a wonderful time this year, thankfully without the drama that came a week later. As you can see dress-ups were big last year and continue to be a hit in 2010. The girls were duly spoiled by both grand parents and their aunt/uncle, so there were plenty of things to keep them occupied.

Another bone marrow test awaits in a fortnight, then we may just be allowed to start venturing out into society again. Worryingly, top of both girls list is a trip to the shops. Hopefully 2010 will continue with less action than the first week, but lots of boring, mundane day to day stuff!

Happy new year to all, and we hope that you had a great Christmas.