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.