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.