Day 16 - Delayed Intensification

You know, before June (which now feels like a whole other lifetime), we used to pack a jersey, a bottle of water, maybe some snacks, oh and wet wipes - for just in case. Now when we go somewhere (which is mostly to the hospital) we pack a blanket, pillow, bag with clothes, spare clothes, medicines and toiletries, for just in case. Just in case they want to admit us. Because you just don't know and I have learned that if I don't pack, then they usually admit us and then we are totally unprepared.

Just after Bianca was diagnosed we stayed for a week and during that very first week I remember somebody saying to me that it is best to always have a bag packed. I thought "yeah right! My child will then be the first to not spend a single night in hospital apart from the initial admission" Boy, was I wrong! Subsequently we've stayed there so many times that it almost feels as if we have shares in the place.

Of course since then I make sure I am prepared where possible.

So this morning we left home with a whole load of stuff, for just in case. Bianca slept on the way to the hospital.

Got there and we waited because they wanted to get the lab results back. I told Bianca that we would have to put her wiggle in and her face lit up and she said "It won't be sore" and I asked "why not?" and she said "because I'll be brave with the magic cream on". We put Emla on before we left home so that we didn't waste time once we got to the hospital.

Bianca wanted to cut out a picture, I managed to get a little smile and after that she was mostly in a bad mood and at one point insisted that we shouldn't talk anymore and that she wanted the room quiet.

A little smile we managed to get.

For most of it, Bianca was tired and not at all in the mood for anything.

Eventually by approximately 12:00 we left without putting the wiggle in as they weren't too concerned about her. Bianca slept on the way home.

Since she woke up from her afternoon nap, she was in a pretty bad mood again. She showed no interest in food and her feet became all red at the bottom and had white splotches. So there I was phoning the hospital again. At first the nurses said that it would be best to take her in, but then Doctor Anne phoned and after asking a few questions, we decided that we would observe her tonight at home and then tomorrow go to the hospital again.

Tonight Terence needed to go to the shops and Sanna decided to go along and that she would drive. Bianca then said "we'll have to make a big "L" so that Sanna can learn". (Forget about the fact that Sanna already has her driver's license). Just the other day Bianca saw a car in front of us with one of those "Learner Driver" signs in the back window.

I really miss the happy Bianca. It is hard seeing her like this, all down in the dumps, sad and not in the mood to do anything. Can't wait until we get through this phase and hopefully the next phase will be much much better.

Caitlyn is a bit fussy lately as well. I think she is getting impatient as she is trying to stand and of course it doesn't always work the way she wants it to. She gets quite excited when I help her stand against Bianca's little plastic table and then when I put something on the table for her to take you can just see her mind working, trying to figure out how to take it without letting go. We have our own little gym going here at home, she is so very busy. Sanna also had to become a little more inventive during meal times and now she offers some finger foods first and then the normal jar of baby food.

So tomorrow, yet another trip to the hospital...

Medicines today:
  • Dexamethasone - 3.5 tablets in the morning, 4 tablets at night
  • Co-trimoxazole - 6.25 ml in the morning, 6.25 ml at night
  • Fluconozole - 10 ml at night


lindai said...

hmmm. your blog is insightful but.... worrysome to me. So I should expect the delayed intensification to be just like the first phase... Where Tristan is on the couch, miserable doing nothing again? :(

The bag comment. always pack a bag. Wow, never heard that but I think I will do it... I just never think we will be back down there.

Is Bianca in Remission yet? Tristan is in remission for now but they said that he will still be treated for 3 years the same. I was just curious to where she was at and if this is just what I have to look forward to.

I hope I am not bothering you. It is just nice to see a little ones blog that is so close to our own that I can compare to!

Lea White said...

Bianca went into remission within the first 5 weeks (induction) and I think that is their aim. I think it is usual to treat girls for just over 2 years and boys for just over 3 years. I guess that makes it hard for other people to understand. I still get questions like "so is she done with her treatment?"

At the moment she is sitting at the Delayed Intensification phase, the final phase for her before she will hopefully start Maintenance beginning next year - the one that will be repeated until we reached the 2 year mark.

To date we have probably spent 60 - 70 days in hospital with one admission being 34 nights as Bianca tried to recover from a viral infection. Most of these admissions happened at pretty short notice and usually with a high temperature. Just Murphy's Law for us, I guess. One of the little boys that we see from time to time has never been neutropenic and apart from spending 3 weeks in hospital at the beginning, didn't spend any further time so far admitted into hospital.

I find this phase the hardest, but I do understand that the Dexamethasone along with some of the chemo can make the kids quite depressed and sad, so I guess we will just have to sit it through until it is out of her system. But yes, she is pretty much sitting on the couch doing nothing...

What is your treatment protocol like?