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.


Sharon said...

I think your surprise bags were a very clever idea. And they look lovely.

Anonymous said...

Fabulous idea. Thx!