Two year milestone approaches

Well, it has been a year since the last post, so long that I have forgotten how to actually log in to this site... I'm pretty happy about that as it shows that nothing much is going on medically. Big changes of course otherwise, with a tree change, hair long enough to plait and a 4th birthday all coming in the last 12 months. Some things don't change though, dinosaurs, chocolate and orange remain a big hit as you can see. For good measure here is a pic of Emily who is rapidly catching Mum in the height department, now that she is a big girl of 6 going on 25 and all, and making a pretty good pirate dancer too:

We're just back from Abigail's two year check-up post transplant. Hard to believe it has been two years, some days it feels like 10, some yesterday, but on Sunday the 28th she'll clock up day 712, a massive milestone: her chances of relapse are, at that point, down to those of the normal population developing leukaemia initially.

In addition to a bone marrow aspirate, there were examinations of her heart, eyes and ears. Her eyes and heart are all fine, with no ill effects to be seen. Her hearing has been slightly compromised though, probably by the antibiotics she received when spiking fevers during chemo. Fortunately it is relatively mild and shouldn't affect her learning or require any intervention. In truth her father is far worse of hearing, not to mention older relatives...

Blood tests were all within the normal range, and she underwent the last planned Bone Marrow test and general, a very exciting event. As usual, she was incredibly tough and stoic about it all, and hadn't forgotten how to put on BP cuffs and use thermometers and so on. There were a few tears about upcoming needles, but luckily they were able to do all blood collections whilst she was knocked out.

In some ways treatment now is harder than when she was little, as Abi certainly knows what is going on. However that also helps, as you can explain why things need to happen and she'll then work it out herself. Unfortunately Mum and Emily were sick this time, so were unable to make this trip. Before the test all she wanted to do was go back home. After explaining what that we needed the test before we could go, and that the quicker she got it done the faster we'd be out the door, she agreed. This took the now familiar process of first getting the usual frown for a few seconds, before you get the stare from those gorgeous steely blue eyes whilst things are being thought out. In true Abigail style she then nodded and walked over to the doctors to be put under and get things underway! A really tough kid that amazes me constantly with her strength and will power. Look out anyone that crosses her down the track I reckon...

Afterwards she just wanted home, and was a little upset, but soon calmed down after half an hour or so, and her current favourite treat, mint slice biscuits:

As you can see she did eventually eat something remotely healthy and in fact spent most of the entire 7 hour drive home eating! She was also chatting about how she almost blew up the aneasthetist's balloon when inhaling the gas, and how she had not one, but TWO needles without feeling them (about which she was very chuffed). She was laughing and giggling by the time we were given the OK to go, and in fact I had to put my foot down to leave as by that stage she was into a Spongebob movie and wanted to stay.

So, fingers crossed that the latest Bone Marrow Aspirate results are clear. If that is the case than there will be no more tests other than annual check-ups, probably at least until 5 years post, but likely longer. So, this week marks what will hopefully be a new stage in our lives. A little scary without the crutch of frequent blood tests, and I'm sure we'll agonise over every bruise to come, but one in which hopefully she only gets the needles that other kids get, such as immunisations, and the trials of bone marrow assessment are a thing of the past. I'll post the results when they come in a month or two down the track, but fingers crossed that will be the last post here.

To show you how far our little girl has come, here is the evidence that she can look after her own social networking from this point on, indeed her parents will soon be actively excluded I'm sure!

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.

The 'ton' is up!

Sunday marked Day +100 since transplant, a really important milestone. Day +100 marks the boundary between a side-effect being labelled acute or chronic. Acute is usually more severe, and can typically further develop into a persistent chronic effect. But, the good news is that if kids don't develop anything by Day +100, they usually don't show any side effects after that. Luckily, Abigail is in this category and has remained free of all symptoms of graft vs host disease, so she is now very unlikely to develop them down the track, touch wood of course. This is a really big milestone that has been ticking away in our minds for quite a while, with only remaining in remission for 2 years occupying a bigger place on our calendar. In short, this is brilliant news that she has made it so far in such fine form (though worryingly is showing signs of interest in taking up percussion on the right).

All of this means that she can come off the anti-rejection drugs next Wednesday. This will mean no more immunosuppression and she can begin the slow process of rebuilding her defences. Earlier in the month she finished another of her drugs, so as of next week will only need 3 lots twice a day. This is all excellent news before Christmas.

Sleeping is slowly improving, as is her appetite. Over the next couple of months she will gradually be allowed more and more contact with others. Her first trip to see others outside the house was also on Sunday to a family Christmas dinner, a really nice way to mark Day +100. Next milestone will be getting some immune function tests and the central line out early in the new year. We hope everyone out there has a great Christmas, and look forward to posting more good news in 2010.

First tests back OK

Another week down and nearly 80 days post transplant now. We're finally getting some lab results back, and the initial ones are good. Only donor (Emily's) cells were found in a sample of Abigail's bone marrow taken a few weeks after transplant. This is good news as it confirms proper engraftment, but more importantly that the engraftment is based on her new cells rather than her old, potentially still cancerous ones. A similar test is underway on a more recent sample, with results expected soon.

A little bit of excitement this week too, with her central line cracking. Luckily the hospital could repair it with a fancy version of a bike puncture repair kit, and no overnight stays were required. No temperatures or the like followed so it seems that the access point wasn't compromised. Unfortunately both girls have a bit of a runny noise at the moment, but neither have spiked a temperature. We'll keep monitoring things, but as you can see both girls remain themselves despite whatever the bug it is. Hopefully it is something minor that will clear up on its own without further intervention.

So, we'll let you know when more tests come back, but for now everything is as we would hope.

No news

No real news since the last posting. Still no word on any of her tests from last week, and things are pretty much the same at home. This means that Abigail has now been home for over a month without re-admission.

Sleeping is still an issue, with a daytime sleep required though not often taken, hence mum has resorted to the secret weapon on the right. These new bean bag chairs usually do the trick! During the night it is a different story, as not much seems to work when trying to get her to sleep. We're trying some new things this week, in an effort to get everyone back into a better routine.

Food and fluid intake is still a struggle, but most days she is taking enough onboard. The biggest concern has been Emily contracting a bout of croup. Thankfully she was able to stay with Nanna and Pop for a week. This seemed to be a long week for all concerned, and perhaps not the last week of holidays Pop had envisaged! It seems to have done the trick though, knock on wood, as so far Abigail is symptom-free. Poor Emily on the other hand has to wash her hands about 400 times a day in the meantime. But, all in all another pleasingly uneventful post.

More progress

Abigail has been home for over three weeks now, and is obviously enjoying being out! The main problem has been getting her to sleep of an evening on her own, not surprising after spending most of the last 6 months sleeping next to one of us. We have ended up buying a new single bed for her to help with this, as when all else fails Mum can lay down next to her for the night. This just wasn't possible in the converted cot. (note that this is not slack parenting on Dad's part, she simply will only tolerate Mum once the sun goes down). Most nights she is still up at 830 of an evening, some nights we end up giving up well before her. This is slowly improving, hopefully every one will be getting more sleep soon.

Some pretty big milestones in the last week. You might just notice it on the photo, but her hair has begun to return, just as the last few strands that survived chemo finally feel out. This has been coming over the last fortnight, with a 2-3mm 'fuzz' all over now. It seems a lot lighter in colour than the deep red she had pre-chemo, but we'll have to wait and see if this persists once it is longer. Both of the girls are fascinated by the process, and can often be seen rubbing the top of Abi's head.

You will also notice that her nasal-gastric tube is out. This was an unplanned consequence of a bout of vomiting over the weekend. We elected to see what happened without it, rather than risk a prolonged visit to the Emergency department to fit another. Luckily, she really picked up her appetite and has been eating enough that her weight has thus far held more or less constant. So far the doctor are happy for the tube to remain out, though she is borderline with the level of fluid she drinks each day. Her kidneys have copped a bit of a hammering over the journey, so they would ideally like her to be having somewhere in the vicinity of 1200mLs a day. This is a big ask, but her tests on Wednesday were all good, so she is taking enough on board at present. Abigail has also bulked up a little, especially in the face, assuming more or less the proportions she had earlier in the year. All together these are really good signs.

The next round of tests will be the first bone marrow aspirate post-BMT on Wednesday. This will allow more analysis of the chimerism levels between her and the donor cells, as well as test for signs of the leukaemia returning. These will likely take some time to come back, so don't expect any news on this for a while.

Still home

Abigail has been home from hospital for over a week now and has finally started settling into her own bed. There have been a few hairy moments, most notably when she has lost her nasal gastric tube while vomiting. This has happened twice now, though thankfully she is becoming more accustomed to having them re-inserted and calms down much faster now after the process finishes.

More worryingly Abi also picked up a bit of a runny nose and cough, but thankfully seems to have gotten over this without a fever or any additional medication. Not unsurprisingly this has coincided with the period where Emily and Dad have gone back to daycare/work and thus we are bumping into a lot more people now. Highlights how careful we're going to have to be I suppose.

Apart from that things have changed little, she is still having supplemental feeds via the NG tube (when it is in) as her appetite is still fairly low. She does eat lots of pasta, so as a result I think we'll be eating spag bol and garlic bread 4 nights a week from now on. She is putting some weight on, so that is the main thing. Her kidney's have improved and there has not been a need for an electrolyte infusion since being discharged, and the rest of her blood work remains pretty good. A slight drop in haemoglobin levels means she might need some more blood soon, though we hope that this will pick up (hence the red meat diet). Other than that she has also had a few issues with apparent muscle wastage in her legs, something not unexpected given the length of time she was confined to a bed. This appears to be easing so we're hopeful that the only treatment for this will be lots of running around after her sister.

I shall try to keep updating the blog as regularly as I can, but in the interests of saving you from lots of 'nothing new posts', you can safely assume that no news is good news.

Discharged!

After 6 weeks to the day in hospital, Abigail was finally discharged on Monday. As you can see she is still receiving some feeds and a truckload of meds each day, but she is also now at home in her own bed.

Her blood has continued to improve, and she now has at least some protection against bacterial infections. However, as a side-effect of essentially anti-rejection medication, she does not have any T-cells. Thus she has little defence against viruses, so even the common cold is very dangerous for her at present. We can't stay in isolation over the 12 months it is going to take for her to rebuild her immune system completely, but we will have to remain vigilant and take all necessary precautions that we can in the meantime.

It has been a great relief to get everyone home again under the one roof, and with some gate leave prior to discharge the girls were able to witness the big game (commiserations to some fans of the opposition that I know are reading this, GFC folk know exactly how you feel!). Emily has also returned to daycare and her dancing this week, so some semblance of normality is slowly returning. Lots of clinic check-ups await (3 a week to start), but these will gradually become less and less frequent, with larger check-ups, tests and scans scheduled for every three months. A little surreal to not have a definitive plan for the 'next step', but fingers crossed she continues to slowly recover and that this last hospital stay was her last.

Home, just for a while but magic all the same!

Two great days today and yesterday. Abigail's blood has continued to improve, with white cell counts over 2 (!), platelets continuing to go up and neutrophils hovering at around 0.7-0.8. This is just brilliant and she has now officially engrafted post-BMT.

On a more practical front, she can now leave the isolation room for short periods. This allowed some quick swing time whilst no-one else was around yesterday and a stroll around the hospital grounds. Today we got the all clear to head home for four hours, which was just great. As you can see she pretty much played with every toy she owns and has been missing over the last 5 weeks (dressed on the right as 'Abisaurus' she tells us!). George the monkey was even smuggled back into hospital, as there was no way she was leaving him behind.

As we thought the visit home, whilst quick, seemed to give her a lift too. Her eating and drinking was the best it has been for nigh on a month. It was just nice for everyone to be out of the hospital again. While she is doing very well for BMT, and is in almost all ways at the very good end of the spectrum in terms of how she is coping and recovering, the constant time in hospital and having the family split up has really begun to get tough on everyone.

If she continues to improve and can successfully switch onto taking all of her meds orally (as opposed to IV), there is tentative talk that we might just check out of hospital next week. Fingers crossed.... In the meantime she is having fun and expending all of her energy in these times out of her room, as the last pic shows!

Day +20

Nearly three weeks post BMT now, and thankfully cheeky Abigail is now a fairly regular presence throughout the day. No major complications at this point and her blood has continued to improve, with neutrophils at 0.3 now and white cell counts greater than 1 for several days. This is all very good, with only magnesium infusions needed to keep everything in balance.

Hopefully by the end of the week she'll be off her morphine drip and maybe start to come off antibiotics next week. If this all goes OK, than we might even start to be let out of the isolation room for a wee while next week. This will be a great relief to all! Still too early to think of coming home, but we should be past the half way mark by now at over a month since admission.

So, no major news, other than gradual improvements, exactly what we want at this point. She is still not eating, but the NG tube is keeping her going for now. Other than that not much else to report other than transient rashes of little consequence. In short, all good.

Engraftment underway!

As we've come to expect Abigail is going extremely well. A few minor hiccups along the way with mouth ulcers, gut problems and overall pain, but all of this has so far been manageable if not pleasant. The big news is that in the last couple of days, Abigail has had detectable levels of white blood cells, reaching the glorious peak of 0.3 today. While normal levels are above 5.0, the fact that she has ANY white cells at all indicates that these beasties are from the newly infused bone marrow, in short, engraftment!

This is excellent news; the transplant is beginning to take hold and, as a result, this means that Abi is also starting to come out of the critical period where infections might be devastating. Viruses are another matter, and she'll be re-building her immunity to those for 12 months or more, but at least her white cells are on their way and hopefully neutrophils will follow early next week.

The next challenge is to see how her body and the donor immune system get on, that is the level of graft versus host disease. As the transplant was matched this should hopefully be minimal, but we just won't know for a few more weeks yet. To date it has manifested in the odd rash that dissappears as quickly as it develops and low grade fevers, fingers crossed that this is all that eventuates. In the meantime, she is feeling noticeably better, though we have had to adjust the morphine levels a little to keep her comfortable. Her IV stand now looks ridiculously full as she is/has received IV antibiotics, anti-rejection drugs, anti-nausea drugs, electrolytes such as magnesium as well as platelets and packed (red) blood cells over the last couple of days. Some days it seems the infusions never end, but to date it is all getting the job done. Amazingly, she now has a few patches during the day when she is up for some hiding games, though it can be tough to find a good hiding spot when you are stuck in a bed...

Day 4

Abigail continues to do well, with no fevers or significant issues to date. Her blood counts are all falling though, she'll need platelets tomorrow and effectively has no white blood cells left at all now. Thus we must be extra careful with sources of infection until the donor cells begin to produce her new immune system.

The one problem has been pain, as her throat and mouth are beginning to get very sore from the chemo. There are no ulcers or open sores yet, but it seems that they are on their way. To help her out she is now on a morphine drip. She has her up and down times, such as playing with Nanna and Grandpa today (here peek-a-booing), but then sleeping for a few hours and not really doing much else for the rest of the day. All of this is normal given what she has gone through, still, it is a shock to see her so flat after she has coped so well to date.

Day 0

Well, Friday it finally all went ahead and the cells were harvested and infused. Emily was great and wasn't worried at all, other than waking up feeling a little sore and nauseous afterwards. After that wore off she was fine, and able to go downstairs and see her special medicine being applied (and eat a chocolate frog).

Abi had a pre-med that made her very sleepy, so she slept through the majority of the process. Amazingly, the marrow is simply hung in a bag after a quick filter to remove any bone fragments etc. After entering her system the cells 'lodge' in the marrow, eventually they'll engraft and start producing blood products.

Abigail is doing well, still eating a little, though it tends to run through her as her gut begins to be hit by the chemo. Engraftment will take between 2-4 weeks, so until then she'll start to go down hill. She now has no neutrophils again and only a few white blood cells, so the danger is from infection. Hence we are in an isolated room, and must take all care not to pass something on. The hospital is currently experiencing a run of gastro, so not great timing there. She might also react in some way to the transplant (similar to 'rejection', though it is the donor cells that will 'reject' and attack Abi's cells). This will hopefully be very mild given the match, but the level is unpredictable. Hence, we wait, as until engraftment and the first 100 days pass we won't be sure how it is all going.

False start

Well, lots of waiting, but not much action today. Emily was on the Emergency list for the bone marrow harvest (standard protocol for donors apparently), however the day surgery centre was ridiculously busy so she didn't get in. Thus no transplant today. Seems outrageous that fractured fingers get priority over a harvest, particularly given the finger can be fixed later in the day or night but the harvest has to happen early enough to get it processed in the lab (office hours). Urrgh. So long day of fasting only to be told at 3pm that it wasn't going to happen. Another 8 hours in hospital waiting. So, same process again tomorrow, though it looks like it will happen, as harvests don't happen on the weekend, and she needs to get those cells now she has finished conditioning. We have been assured that a day or two later than planned won't affect Abigail in terms of her prognosis.

Abi is starting to feel the effects of all the drugs used during conditioning. She was fitted with a nasal-gastric tube yesterday and has been feeling off and grumpy much of the last few days. She has also been plagued by nausea, the odd bit of vomiting and also diarrhoea. Thus fair enough that she isn't happy. On the plus side she has started eating the odd bit here and there over the last two days, but has lost weight after refusing all food and drink for a few days before this. We can expect this peak in condition to end in the next day or two, as she is currently on a relative 'high': getting over much of the cyclophosphamide-induced nausea, but not yet experiencing the full impact of all of the other side effects such as mouth ulcers, GI tract problems and low blood counts. These will likely kick in over the next day or two and she'll be gradually fed more and more through the tube and perhaps eventually the IV drip. She has now moved into her own isolated and cleaned room, and will not be allowed out until engraftment is successful and she has good counts again (likely 4-6 weeks from, hopefully, tomorrow). So, no real news today, but as it can't happen on the weekend I'm sure it will tomorrow.