Day 3 - Delayed Intensification (photo added)

Today was the second injection of 6. 4 More to go. It was really unpleasant. I didn't put ice on Bianca's leg until there were only about 5 minutes left before the injection had to be given. Jo was running around and forgot. So of course we didn't put ice on Bianca's leg for very long. Got to the treatment room and they then told us that they had to split the dose into two syringes and that it will be an injection in each leg at the same time. So then I had to quickly put ice on the other leg as well, but I don't think it was long enough.

On the way to the Treatment Room Bianca started crying "it will be sore" and of course there is not much I can say about that. It is not like I can say that it won't be sore...

Well, she screamed and screamed and wasn't interested in the special reward bag and didn't even want her baby. It is heartbreaking, and hard to explain to her why this is important. Can't wait until these stupid injections are done.

So then she slept during the 3 hour wait period afterwards (the pre-meds made her quite sleepy). She was really grumpy when she woke up and it doesn't help that the dexamethasone is known for causing mood swings and grumpiness.

Since Monday Bianca has been quite emotional and grumpy and crying about little things. 18 more days to go and then she will be done with the dexamethasone for this phase. Today she also started getting hungry more often and I think soon she will have a massive appetite again like the very first time.

Medicines today:

• Dexamethasone - 3.5 tablets in the morning, 4 tablets at night
• Erwinia - Chemo injection into both legs at the same time (ouch!!!)
• Co-trimoxazole - 6.25 ml in the morning, 6.25 ml at night
• Fluconozole - 10ml at night

Day 2 - Delayed Intensification

Today was a difficult day for us. Bianca was quite unhappy, not in the mood for anything, wanting food, but then not interested in eating it. Then crying for seemingly nothing at all, then at one point Bianca said "I'm not talkative". Bianca complained twice of having a "sore wee" and so I phoned the ward to find out what I was supposed to do. She didn't have a high temperature, but they wanted to see her just to be on the safe side.

So then at 14:00 I had to pack bags, pillow, blanket, clothes and toiletries, just in case we needed to stay the night. Of course when we got there, Bianca perked up and did not have a "sore wee". They took blood from her port and then we had to wait, and wait and wait. Eventually at 17:40 we were told that the blood and urine test came back clear, however, her neutrophils jumped from being 1.4 to over 6 and that might indicate that her body is busy fighting something.

So tomorrow when we get there for the next injection, they will have another look. Of course sometimes it takes 2 days for something to "grow" in the blood culture and we might very well be in for another admission. Of course we are very very hopeful not, but we have to be realistic about it and we know that anything is possible.

So today just did not turn out the way I planned and ended up being quite long.

Medicines today:

• Dexamethasone - 3.5 tablets in the morning, 4 tablets at night (steroid)
• Co-trimoxazole - 6.25 ml in the morning and 6.25 ml at night (antibiotic)
• Fluconozole - 10ml at night (antibiotic)

Day 1 - Delayed Intensification

And so it has begun, the final phase of the intensive treatment. After this phase, we should be ready to start Maintenance early January 2008 and that will take us through to sometime late 2009. Then after this of course still regular blood tests and checkups probably every month and then slowly but surely moving on to less regular checkups, but Bianca will probably need some kind of checkups until she is an adult - so this is very much a life-changing event that will stay with us for a long long time.

Today was Day 1. It was a long long day and we left home at 7:30 to make sure we were at the hospital by 8:30. Bianca couldn't have any breakfast because she was due to go to theatre at 10:30. Got there, and first they had to put her "wiggle" into her port - the line that they can administer medicines, draw blood and hook to the IV line. So basically they put it in, secure it and then it stays in until she was ready to go home. Bianca usually does not like having it put in and usually cries (although the skin is numb and it doesn't hurt at all), but today she did not cry at all. Then we waited until it was time to go up to theatre. Got there and I had to put on my "fancy dress" - Bianca calls it a marshmallow mushroom and this is basically the protective clothing that they want you to wear in theatre. She was first on the list and so we went through, Bianca was wheeled in on her bed and I walked along. They administer the GA through her wiggle line and she drifted off really quickly and then I had to leave and wait for them to call me.

All dressed up and ready to go...

Bianca in the operating theatre, ready for action...

During this time they did a lumbar puncture and administered methotrexate into her spine. It is a very quick procedure and so it was not long before they called me to recovery where Bianca was waiting. We had to wait for her nurse to come and get us and then it was back down to the ward.

They then gave her some pre-medication to prepare for the injection and this would hopefully eliminate or limit the chance of an allergic reaction, so some of it was given orally and some of it through her port. And they also gave her her Dexamethasone which they had to crush up and mix with water or something.

Waited 15 minutes and then they brought ice. We drew a silly face on Bianca's leg where they would give the injection and this was so that it would be easy for Bianca to put and keep the ice on the right spot to try and numb it as much as possible. The Emla cream is only really helpful for numbing the skin and it doesn't numb the muscle at all. Bianca kept the ice on her leg the whole time until it was ready to get the injection.

We then had to go to the Treatment room which is where they keep all the distraction toys and where they do some of these nasty things. Of course Bianca knew what was going to happen and she started crying when she realised that there was no getting out of it. I always discuss these things with her as well as why it is important, but still, it is not a pleasant procedure and it is heartbreaking seeing her so unhappy and sad.

This time round she will need 6 injections into her leg (one every second day) because she reacted to the last one. So the weekend I made up some surprise bags (one for each time) with some little things inside. So it is almost like finding "treasure". Bianca was really excited when I told her what they were for. She saw the bags, but I sealed them and she has no idea what I put inside each one. I wrote a letter of her name on each bag and so this morning she chose to take the bag with the "B" on it.

I must say this worked wonders and she stopped crying pretty soon after the injection and then had lots of fun unpacking and playing with the goodies that I packed.

So then it was the long wait. 3 Hours to observe and make sure there is no reaction. During this time they also gave her Vincristine through her port which is really quick and then Doxorubicin which took 2 hours to run through her port.

Here is Bianca lying down, watching Willy Wonka and the Chocolate Factory and getting Doxorubicin through an IV line.

By 16:50 we were finally ready to leave.

So tonight I am quite exhausted. Our next visit to hospital will be on Wednesday for the next injection.

So medicines today:
Dexamethasone (a steroid) in the morning (3.5 tablets) and evening (4 tablets)
Vincristine (through her port) - this is chemo
Doxorubicin (through her port) - this is chemo
Methotrexate (with a lumbar puncture) - this is chemo
Fluconozole (taken orally in liquid form) - this is an antibiotic
Erwinia Injection (this is a similar form to the Peg-Aspariginaise, but because Bianca reacted to the last one, needs to get 6 of the Erwinia ones) - Chemo injected into the leg muscle and this was injection 1 of 6.

The next phase starting on Monday

On Monday we are starting the Delayed Intensification Phase which will be for 56 days - well 42 days, but then it seems 2 weeks recovery before it will be completed. If all goes well, shortly thereafter we will go onto the maintenance phase for the remainder of her treatment.

So basically we will have the following in the next phase:

• Dexamethasone (this is a steroid) and given by mouth
• Vincristine (through her port)
• Doxorubicin (through her port)
• Asparaginase (injection into the leg muscle - Bianca will need 6 (1 every second day) as she reacted to the last one)
• Cyclophosphamide (through her port)
• Thioguanine (by mouth)
• Cytarabine (by needle inserted under the skin)
• Methotrexate (by spinal tap)

This phase will be much more intense and Bianca is likely to have much lower levels than before and as a result will be at higher risk of developing infections with exposure to sick people. So I foresee this phase to be more isolated than the last one as Bianca will have to avoid crowded places. At least with the last phase Bianca was able to go to the shop every so often when her levels were high enough.

Not really looking forward to it, especially the Asparaginase and Cytarabine. Bianca really does not like these!

Discharged from hospital

On Friday morning Bianca was discharged from hospital after a 10 day admission period. Lucky for us she was able to visit home every day so that helped. She was so excited when she was discharged on Friday and realising she wouldn't have to go back to the hospital to stay that night.

Yesterday Bianca visited her friend Edie and the two of them had great fun. Edie was a friend from Bianca's daycare. Biana told me "we played in Edie's room and made a big mess and then I helped to clean it up when it was time to go home". David, Edie's dad used to live in Melbourne and the two guys chatted about Terence's trip to Melbourne recently. I stayed home because Caitlyn is now in a routine where she goes to sleep at 9:30 each morning so for now I try and stick to that routine. In the afternoon I went to a tupperware party.

News with Caitlyn is that she now has 8 teeth and it looks like number 9 wants to make an appearance at the top. She sleeps through more often (but will probably wake up tonight just because I wrote it here and to prove a point :0) ... ). She is now able to sit, then move onto her tummy to "crawl" around and then get herself sitting again. Every so often she will get onto her hands and knees, tummy off the ground and try and move around, but then will get impatient and then back onto her tummy to drag herself to where she wants to go. She has now also started to pull herself into a standing position if you hold your hands out to her and then she will stand there bouncing - very proud of herself.

Holding her own bottle...

Bianca's hair is growing back, but I suspect she will probably lose some of it again now in the next phase. Now in the week Bianca entered a competition at the hospital. Kate, the play specialist gave her a big pad of paper and some crayons and then Bianca had to draw a Christmas picture and if she wins she might win a DVD player and get her picture printed on the hospital Christmas cards. So we will see if we stand a chance or not. Either way, she had fun and that is the most important thing. Bianca drew a Father Christmas, a Christmas tree with some decorations and a big star on top and then 4 presents. I thought it looked really good and even Kate said it was pretty good.

It was raining this morning and Bianca decided it was a good opportunity to grab her umbrella, raincoat and gumboots.

Just another day in hospital

The last few days I am driving approximately 110km a day (backwards and forwards to and from the hospital), but I am not complaining because it is far better to do all this travel and get Bianca out of the room. Even though it is a bit tiring, it is just such a highlight to see Bianca's face light up when she gets home. Bianca was a bit emotional today, I guess she just wants to come home now.

Bianca watched teletummies today - well that is what the nurse called the ultrasound images of the scan Bianca went for.

Bianca needed an ultrasound scan to check her kidneys and bladder function. A while ago she had kidney stones (quite unusual for a 4 year old to get kidney stones), so I would imagine it was to check whether she still has kidney stones or if it cleared up.

Today Bianca showed Caitlyn some of the puzzle pieces of one of the baby puzzles that used to be Bianca's. It has all sorts of baby animals and Bianca lifted up the bear and said "Look Caitlyn, a baby bear" so I said "bear cub" and Bianca replied "bear cub". She put it back and then picked up the turtle and said "look Caitlyn a turtle cub" well, I laughed so much I could not say anything.


Terence received some sponsorships for Movember, so thank you so very much to all of you sponsoring him.

After today Bianca will have 397 beads, we are just waiting for more stock to arrive and will then get the beads that are still outstanding.

Monday and another day in hospital

Bianca is still in hospital. It seems that she will be there probably until Friday. Well the doctor indicated that she would need a total of 10 days antibiotics (and I counted until Friday) - so here's hoping...

She still has raised infection levels - although lower than before, but we are still not 100% sure what exactly. But then Bianca's never been a straight-forward case, she tends to get all sorts of things that are out of the ordinary, like getting a rash that nobody would have any clue what it would be.

The good thing is that for most of it, Bianca is pretty happy. We are still allowed visits home after the 9:30 antibiotics each morning and then we need to be back at the hospital for 16:00. The antibiotics are IV antibiotics. This morning she told Dr Anne "Caitlyn is missing me". And then she just lightens up so much when she sees her baby sister when we arrive home. I think this time round she finds it a little hard not being able to see Caitlyn as often as she is used to.

By the afternoon on the way back to the hospital Bianca is usually exhausted and takes a nap on the way.

Yesterday we had the opportunity to go see an Air Display that was put on by the Life Flight Trust. Bianca really enjoyed it and it was so exciting to see the aircraft up close - especially the helicopter. The helicopter had to leave shortly thereafter on a mission, so we saw it take off. It was cool.

Sitting on Daddy's shoulders - the best place to be...

Wow, look at the helicopter!


Bianca the helicopter pilot...


This patient was a real "dummy".



Getting ready to go on a mission.


Almost ready for take-off.

Still in hospital

Well, Bianca is still in hospital. No word yet on when she will be discharged. They are still treating the infection - not yet sure exactly what it is.

Today at least she was allowed a visit home in between antibiotics so they gave her her antibiotics at 09:30 this morning and then we dropped Terence off at work and Bianca and I went home. She was so very excited to see Caitlyn and just loved spending lots of time with her. The two girls are really fond of each other and Bianca just loves being a big sister. I left the kids with Sanna and quickly went to the shop to get a few things and then when I came back, Bianca and I went to the beach for a little bit. Bianca had lots of fun running around on the beach, picking up rocks and shells and playing with the sand. She didn't swim or anything, but did go into the water a little bit. It was good to see her so very happy and full of life.


15:00 we had to leave, got Terence from work and then had to be back at the hospital at 16:00. We got a few more beads today, but they were short on the one colour so we will have to get that when they get stock. We are sitting at 366 beads up to and including today.

Tonight Terence will be at the hospital with Bianca and I will probably sleep there tomorrow night and on Sunday night. Then on Monday I will be there during the day and Terence will be back on night shift for the week.

Caitlyn is doing great. She slept through last night so it was good to have a full night sleep. A new thing for Caitlyn is that she will pull herself into a standing position if you hold her hands and last night after her bath she kept pulling the towel over her face and then moving it down so that I can say "there she is". So it seems a new "after bath" game. It was really cute and lots of fun to see her cover her face and then move it down in anticipation.


Here is a video clip of Caitlyn pulling herself into a standing position.

Tonight I feel a bit tired. I was hoping that Bianca would have been discharged today so that things could just get back to normal, but we were not so lucky. At least for most of it Bianca is pretty well and happy, I just wish the infection (whatever it is) would just go away now so that we can move on.