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!