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.

Cyclophosphamide

Abi has started on cyclophosphamide, the second phase of 'conditioning' her marrow before transplant. Hopefully this is the last chemo drug she'll get, as it has been knocking her around a bit unfortunately. Last night was a couple of hours of nausea and vomiting, and a little more again tonight. This has been less than we anticipated given the quick onset yesterday after dosing, however the anti-nausea drugs were better timed today so are hopefully helping. She battles through it all pretty well as we've come to expect, and has even managed to have something to eat this afternoon. Hopefully she continues to eat a little, as this will help her gut recover more quickly (the gut lining is affected by chemo as much as the cancer cells, hence the nausea). Either way she'll get a nasal-gastric tube on Wednesday to help her through things down the track.

So, not a lot else to report, other than her blood continues to be good. The heavy doses of drugs are starting to take effect though, and she is a little flatter throughout the day and is losing her appetite. Two more doses of this drug to go, so fingers crossed the cumulative side effects don't add up too much mid-week before transplant day on Thursday.

Countdown update

The countdown to transplant began this Monday, with the first batch of chemo drugs ending tonight (she receives 3 different types leading up to transplant). So far Abigail has been a bit flatter than usual, and has been quite nauseous at times. This has meant her diet is now whatever we can get her to take in, so pikelets and chocolate milk for lunch is now on the cards as you can see.

Her blood product titres are all good at present, and she has yet to lose any weight. Drinking is a bit of a problem, so she has been on fluids to help out with this again today. Tomorrow marks the beginning of a different drug that is likely to make her feel quite ordinary, so we're hoping she copes with this latest challenge with her usual aplomb.

She is also now in a single room again, so has a small desk and chair to use when she is up to it. This also means that she has the run of the room when not getting IV treatment, and can play music and sleep whenever she is ready. This is much easier on everyone than trying to fit our life around other kid's schedules. The room also overlooks one of the entrances to the hospital, so she also enjoys sitting at her desk watching the strange people folk wander by during the day.

I've said this before, but so far so good. Not such a bad thing to be repeating, but expect things to get rougher for a while starting tomorrow.

Respite and recuperation

Abigail has been home for two and a half weeks now and, both clinically and via the less technical assessment of her cheekiness, is in the best health that she has experienced in a long time, likely all year. Her neutrophils are above 1 for the first time since testing began, her other blood counts are good and her marrow remains clear. Abi has amazing energy throughout the day, which is typically spent running amok throughout the house. She is particularly fond of strollers and new shirts featuring ponies (as can be seen on the left).

The last fortnight has been a good though challenging period, as we can't help but look ahead to Monday when another hospital stay begins. Both of us alternate between wishing Monday would never come and hoping that it was just here and we could get on with it. The kids seem largely oblivious to most of this, and carry on enjoying each other's company with few squabbles. They both love playing games with each other all day, which is a good thing given that we are in self-enforced isolation. This is to try and avoid any last minute illnesses and keep both girls (and us) in the best possible health before treatment begins. Abigail has been in to the clinic most days in the last week to go through a battery of tests that have checked and provided baselines for just about everything that they can measure. These have all been good so, baring any last minute onset of a major illness, the initial chemotherapy for the bone marrow transplant will begin this Monday afternoon.

Abigail will likely be in hospital for between 2-3 months this time around, and by September will be pretty knocked around by the various bits and pieces that they need to give her. Given this, it will likely be pretty rough for a while. Still, we hope that this will all be worth it, as this way she has the best chance (80%) of a long-term cure. So, fingers crossed that the transplant is the last bit in all of this and by year's end she is back to her self.

Short detour

A slight detour again in the last week. Abigail unfortunately spiked a fever at 8pm last Thursday, so it was back to hospital for another week. This time though it was just to get some IV antibiotics and to undergo closer monitoring. Fortunately, the fever spike was not long-term and after the first night she was fine. The hospital stay had to continue until she was making some neutrophils, hence the week long admission.

Thankfully nothing additional was picked up on our brief trip through the Emergency department. At the time every available space had a bed with a coughing/vomiting/clearly unwell kid in it. Not exactly the best place to be without neutrophils in your blood. Luckily a bed in oncology opened up quickly, so we were only there for 4 hrs or so rather than the 15 they had told us to expect.

Her blood counts are now rising, showing that her bone marrow is recovering from the last round of chemo. Touch wood this should mean that we can stay home until her transplant in a couple of weeks. In the meantime she will still be going back and forwards to the outpatient clinic to get a whole heap of pre-transplant work-ups. However, day trips to the clinic are far more preferable than admissions to the ward, so at this point we'll take that.

Uno, dos, tres. Round three finished.

Another 5 days of intensive chemo and Abi is back home again, being far ahead of schedule as is becoming typical for her. Just one week in hospital, we were told to expect at least 3 weeks if not 4. She is one tough little girl. Another trip to hospital in the coming days is probably inevitable as we are expecting a fever spike, but perhaps not. Either way we have another few precious days at home.

This time around she suffered some pretty high fevers, hitting 40 degrees on Thursday night. This landed her in an intensive care bed for a day. After this she developed an itchy rash all over, whether from the antibiotics to combat the fever or the chemo we just don't know. Unfortunately this lead to another couple of nights without much sleep due to the itching. This explains the pic above as she was pretty tired watching TV (Diego), note that she is also smothered in calamine lotion, hence the white patches in the photo to the left. On the right we'd switched to sorbelene cream, the slicked back hair is not her new style. Her blood has been pretty good throughout this, receiving only a batch of red blood cells this time around (so far).

In true form she handled all of this very well, and was soon back to her usual self. This routine now includes not letting the nurses take her temperature unless she gets the thermometer out of their pocket first. She also tells them which arm/leg the BP cuff has to go on and insists on placing the pulse/oxygen meter or her toe/finger herself. With doctors, as in the pic on the right, she won't them listen to her chest until she has used the stethoscope on them or her teddy first.

This concludes the initial rounds of chemo, and the good news is that she has remained in remission and is thus on track. The next step is a bone marrow transplant from her sister at the end of August. This will give her the best chance of a complete cure. It is riskier as the drugs are much stronger, which is why they do the transplant at the end of 8 days treatment that will essentially destroy all of her marrow (and thus any residual leukaemia). The donor cells are then implanted to get her immune system back up and running faster and enable her to begin making her own blood products. This reduces the period where she will be extremely vulnerable to infection, so she will be in strict isolation until her system is back up and running. The stay in hospital following transplant will be 6-18 weeks. A pretty big mountain left to climb, but hopefully that will be the last one with only check-ups after that.

Ready for round 3

Great news again this week as Abigail's blood work began recovering from the chemo on its own. So, no transfusions or platelets needed since the last post. Her platelet count is now above 800 (it was as low as 10) and her haemoglobin is rising again. She has also not had fevers and is finally free of that pesky cough. All this means that trips to the hospital have been kept to a minimum and, knock on wood, we won't have to go back until Wednesday when Round Three starts. She is in the best health she has been since all this began; next round of chemo will be the toughest she has had, so this is all in her favour.

The new house is much more kid friendly, with a bit of a 'circuit' track around the two hall ways that lets both kids run lap after lap of the house, accompanied by Disney soundtracks and lots of laughing. They love doing this and it has become a regular after dinner passtime. Both girls also enjoy riding their bikes/trikes on flat concrete, rather than the more challenging 45 degree slope we had in the last place. It has been a relatively mild winter thus far so this has also been popular in the last week. Lots of energy for such a little girl, puts mum and dad to shame!

Home again

A busy fortnight, we've managed to decide to find a new house, get a new house, pack and unpack, all while our little star has breezed through another round of chemo. We have all been home in the nice new (warm!) house since Thursday, and as you can see she is her usual cheeky self for the most part again. A little tired and grumpy, but fair enough. She has also graduated into a big girl bed as well, no more cots.

So far only needed a couple of check-ups and a top up of platelets since checking out, though she'll likely need more blood in a day or two. The big thing is that so far no temperature, so (knock on wood) if this continues we get a few more nights at home and day trips to the hospital only until we start the next round of chemo.

I'll send another group email shortly with our new mailing address, but the phone numbers all stay the same (eventually after several technicians visits)...

The VERY VERY good (and a little bad)

Brilliant news yesterday, Abigail is officially in remission! Yes, REMISSION! This means that they can no longer see any cancer cells in her bone marrow sample which, while it doesn't mean she is cured, means that the first round of chemo worked as well as we could have hoped. She will still continue to receive more chemo as planned, but so far so very, very good!

Bad news is that she started chemo again last night and this round hasn't been as smooth. She is quite upset at present and seems to be a bit sore, no longer standing and not really eating/drinking. Seems watching Diego is about the only thing that worked today. However we'll try and get her on some stronger pain meds tomorrow and hopefully this will help. It is likely that she will continue to have good and bad days though, so while unsettling this is again not unexpected. Abs also had a flu shot yesterday so it is also probably causing some trouble, as it seemed to stir the rest of us up when we had ours.

Meanwhile we're packing tomorrow and moving Sat morning. Thankfully Megan liked the house after seeing it today (post-lease signing, phew) so all good. Will be great to live in a nice house with a flat backyard for the girls again. So, very busy but thought I'd quickly pass on the good news. Thanks also for the various presents we've received, all have gone down very well so many thanks to all. It is humbling to see how many people have offered to help her and us out, a positive from all of this mess. However, she is now in remission, so things are heading along the right track.

A few good days

Some excellent news yesterday, Abi's blood counts were all improving and deemed sufficient to allow her out of the clink for a few days! So, home at last after a month and a day. All being well from here she'll start the next chemo round and be re-admitted Wednesday morning. This is good as it will be on track with the protocol, so far so good. A bit scary at home though as, despite it being so alien to start with, the hospital life had become normal after such a long time. Still, she clearly loves being home and it is great to see everyone in the one place again.

Another good piece of news is that we've finally managed to find another place to live. Nice and open house with ducted heating and cooling, plus we can have Jacko as well. So, might be the last blog for a wee while as we'll have to pack, unpack and start hospital again all in the next fortnight. Will be very good to have a nice clean home again though, and heat at the flick of a switch will be magnificent!

Some neutrophils at last!

Some more good news today, with Abi's neutrophil count finally reaching detectable levels again, though at 0.1 she is still neutropenic and prone to infections. However, it is a start! Looks like she'll be able to start second round of chemo next week if they continue to improve, which won't be nice but is nevertheless good news.

Good day today, got to have everyone home on a gate pass for a short couple of hours. Enough time to watch Snow White, eat some normal food together and be at home for the first time in three weeks. I think all were happy, especially Abs and Em.

Rougher week

A bit of a rougher week as Abi has developed her first fever and picked up a bit of a virus as well over the weekend. Neither were that surprising, she has been neutropenic for the entire trip thus far and fever is a known side-effect of the chemo drugs and/or virus. Still, not good seeing her obviously sick. As a result we were moved to another ward and are currently in isolation. Cabin fever has set in as we're stuck in a tiny little room and not allowed out at all, there are only so many hours in a day that can devoted to Diego (as in Dora's cousin, use google those without kids) . Worryingly she was asking for that to be played while stirring in her sleep the other night.

Still the fever has eased from the spikes of the weekend and she is back to herself again, though has had another transfusion and will likely get some more platelets soon as well. As a precaution she is on heavy anti-biotics and anti-fungals, and has learnt to keep herself amused by mastering yet another TV remote as you can see above. Someone has also taught her how to surf along IV poles while being pushed, though this has not gone down well with mum... So, a few bad days this week but on the mend again now. Should be back in her usual ward in a few days once the runny nose eases up, til then lots of painting, drawing, sticking and maybe IV surfing to fill the days.

End of first chemo round

Well, as you can see Abi is coping well with her chemotherapy and hospital stay. Her sister enjoys visiting as well, though everyone is getting a little cabin fever as her stay kicks over into it's third week. Health wise Abigail is doing really well with few side effects, though these will likely becoming more of a problem soon. Still, so far so good and her eyes are responding well to the treatment.

Several people have asked what they can do to help, and we shall try to take people up on this when we can. One thing that is easy to do and critical is to give blood. Abi has already had one transfusion and is facing many more over the months ahead. It is sobering to think of all the kids in all the wards around the country that are reliant on this scant resource, and what might happen if it ran out. Thus if you are able making a blood donation it would be a good thing for all. Thanks again for all the offers of help and support, very much appreciated.

Finally a reminder about what to post here. I think you can post comments, sign up for notifications of updates etc, however please remember that the blog is open access and thus anyone can view it. So, no placenames, DOB, details etc of the girls please. We'll try to keep this updated c.weekly or when we get some more news.

Our little girl

Abigail Grace McDonald was born in July 2007, and right from day one she has been a very headstrong little girl. Even before she could sit up, much less talk, she had her own way of letting us know what she wanted. But, given she often has a dubious level of 'help' provided by her older sister, I guess a bit of attitude is not to be unexpected. She has a special spot for her mum, Diego, Dora and of course the two middle fingers of her left hand that rarely leave her mouth. Her smile is always huge though, and she is generally doing her best to keep up with Emily. Her favourite words are 'no' and 'me', as in 'me' do it.

Our world came crashing down last Friday, 8 May 2009 when she was diagnosed with Acute Myeloid Leukaemia (AML). This has hit everyone hard, not least because Abi is still seemingly in such good health on the outside. She already holds her hands out to allow BP cuffs to be put on, or lifts her arm for temp to be taken in her armpit and tries to pull the drip trolley behind her.

However, she is a very sick little girl and has begun chemo tonight. The road ahead will be very long, with 6-8 months of treatment to be expected. So many people are a part of her life that we'd thought we'd try and keep this blog as a way of letting people know what is happening. We appreciate all of the messages we have received, and appreciate the offers of support. While the road ahead will be difficult, Abi's strong spirit and the excellent staff give us a great deal of hope and confidence. She is a fighter like all of the McDonald girls, and for one so small such a big spirit will be amongst the best medicine that she can get.