Dexamethasone

Yesterday was the last of the dexamethasone for this phase that I had to give to Bianca. The dexamethasone is a steroid (so she won't be entering any big sport events!) and it can cause an increased appetite and weight gain and it can also cause mood swings and things like that.

This first time round Bianca was on it for 28 days. She developed a massive appetite and was constantly hungry. So much so that an hour after eating a big meal she was asking for food again. Then she would be up again at 3 in the morning asking for food again. So we got in the habit of leaving a lunch box next to the side of her bed.

One evening after she had gone to bed, I was sitting with her as she was eating some stuff. At that stage she already gained quite a bit of weight and had this really round face and tummy. I remember feeling quite sad that she sat there stuffing all this food into her mouth and getting quite out of breath and she didn't look like she used to look. Of course as soon as she went off the dexamethasone, her appetite became quite normal again and she lost the excess weight.

Another thing that happens with dexamethasone in particular is that Bianca tends to go off sweet things and crave salty items. So one of the things that she wanted all the time was Salt and Vinegar Pringles.

She didn't go on dexamethasone in the last phase. But in this phase she was on it for 5 days at the start and went onto a marmite sandwich diet. Well, it is actually vegemite, but she calls it marmite. I didn't mind too much because the bread we buy has extra iron in it. She just completed the second and last 5 days in this course and this time round it was rice crackers (the chicken flavour). This time round it also made her more clingy and much more emotional. That is quite hard, because you can't get angry as it is not her fault, but only the medicine she takes. But it becomes quite tough as she doesn't even want you to leave the room and she wasn't very interested in doing a whole lot of stuff. So I found these last 5 days quite tough.

In this phase she didn't have a huge appetite and weight gain as in the first phase. I'm dreading the next phase starting early November as she will be on this for 21 days, but hopefully she won't have too many of these emotional days.

Swedish baking and writing

Yesterday Sanna baked some Swedish Cinnamon Buns. It was quite a process and seemed like a bit of hard work. It is like making bread dough that then has to stand and rise. She then rolled it out, spread it with a butter / sugar mixture, then spread cinnamon over it. She folded it and then cut it and made it into the relevant shapes. She put it on the baking tray and sprinkled sugar crystals over it, and let it stand once more to rise. Then she baked it. It tasted quite nice. She said they came out a bit too big, but they looked just fine to me.

Bianca has been practicing writing all sorts of letters. They are mostly capital letters, but she will write a set, then she will write the same letters, but in a different order and ask what it says. Sanna has been pointing out which of those word groupings in each set might make a Swedish word and what it means. So Bianca is quite proud that she is able to write "Swedish Words" and I can't do it. :-).

And Caitlyn is off!

Now that Caitlyn is quite good at dragging herself along the carpet, she has now also learned that she can move onto her tummy from a sitting position.

She also discovered that there are other rooms in the house and not just the playroom. So she loves to make her way from the playroom to the lounge (it is right next to the playroom) and the kitchen which is part of the open plan lounge / dining room area.

She also discovered the corridor yesterday and I had to close all the doors so that she wouldn't be able to go into one of the bedrooms. So now we pretty much spend our day getting her and bringing her back to the playroom.

She really loves eating her solids. We are meant to give her oranges and stuff like this so that she can have vitamin C with her meals to help her absorb iron. She does not like oranges and you should see her pull her face. She does seem to like strawberries and doesn't mind nectarines too much. She loves banana. So now we give her a fruit flavoured baby solid food that has vitamin C listed, and at the same time also give her a meat-based one and then we cut up little pieces of fruit for her to "play" with and put in her mouth. Of course most of it ends up on the floor, but she has fun anyway.

Caitlyn doing really well

On Wednesday morning I had to take Caitlyn for her Plunket visit. This is where they weigh the baby, look at physical development, discuss feeding and so on. Caitlyn is doing really well. She weighs 9.65 kg and her length is 74cm. The lady at Plunket was really surprised to see how well Caitlyn is able to sit. She says that a lot of 7 month old babies don't sit as well. It was nothing funny to us because Bianca sat properly at 6 months so to us this felt normal. But then I guess with the amount of tummy time Caitlyn gets, it really helped her develop those back muscles.

Caitlyn has become pretty quick, still just dragging herself along the carpet. From time to time she would actually get up on her knees and hands rocking forwards and backwards and you can see she is trying to work out what to do next. So now anything accidentally left on the carpet becomes a magnet - the remote, the packet of wet wipes, a glass and so on. So now the running around starts...

Some minor side effects

Yesterday Terence left for Melbourne. He was at work for a few hours and then took a taxi to the airport. He was very excited and will update the blog with his trip and photos when he has a chance. He is due back next Sunday.

The past 2 days were a bit tough as Bianca was emotional and sad and a bit clingy. This is all just part of the side effects.

It helped that her neutrophils were really high so I was able to take her to a shopping centre with me. It is a bit of a risk because she might be able to pick up some or the other bug from there, but it was good to see her cheer up a little bit. Her favourite part of going to shopping centres are paging through some books, looking at the toys and see what noise and movements they make and of course getting an ice cream. Of course this always gives us a good idea what to get for birthdays and Christmas.

The jokes are coming thick and fast

What's the difference between a teabag and the All Blacks?
A teabag stays in the cup for more than 3 minutes.

Heard about the new All Black bra?
All the support and no cup.

What's the difference between the All Blacks and Viagra?
Viagra will get you at least a semi.

What's the difference between the All Blacks and an arsonist?
An arsonist wouldn't waste 5 matches.

A collection of beads!

Yesterday Bianca had to go to hospital for a finger prick. It was just a short visit and then she came home.

Today, we had to go to hospital for treatment and it was a theatre day. The day was a bit of a long day, but only because we had to be on the ward at 10:30. We also got our first set of beads today. There is a reward programme called "Beads of Courage". Basically for every procedure that Bianca undergoes she earns a bead. This is a visual representation of her experience and will allow her to be able to look back and feel proud of what she has achieved.

To date, since she was diagnosed 4 months ago, Bianca has earned 327 beads up to today. I did not have my updated list with me, so Bianca received 308 beads today. She also received beads that spell out her name as well as a bead for her birthday as she was in hospital on her birthday. She also received 3 milestone beads - each one for reaching 100 beads.

So basically there are black ones with silver stripes for each time there was an injection, blood draws, and so on. White ones for each day of chemo (excluding the ones Bianca gets every single night at home), red ones for every single blood product transfusion, yellow ones for being admitted into hospital and so on.

We will only be back at the hospital for blood tests on the 23rd of October.

A busy week

Things are going well, although it is a bit cold at the moment.

The past week and a bit was a bit rough with Caitlyn as she had a tummy bug, she is also teething, got nappy rash because of the teething and now has an ear infection (which the doctor says happened after the cold she recently had). The ear infection is not really bothering her much. And then for 2 days or so she went through a growth spurt which meant she woke more often at night for feeds.

On Sunday, Bianca went to a birthday party and thoroughly enjoyed herself. She was dressed as an Autumn Fairy. She got to see some of her friends from daycare.

On Sunday afternoon, Terence, Sanna and Bianca went to see The Wellington Phoenix play soccer against the team from Perth. We got tickets from The Child Cancer Foundation (through the generosity of Terry Serepisos and the Wellington Phoenix team) and had some snacks and beverages prior to the match starting. Bianca had lots of fun playing with Sean and she was happy to see Liam also came to the match. Both are Oncology Patients. Wellington Phoenix won. Terence doesn't know much about soccer, but it is quite popular in Sweden, so Sanna had a pretty good time.

On Monday nights Terence plays squash at the Tawa Squash club. He really enjoys it and tries to go every week. I can't see any point in running after a tiny little ball in a confined space... :-). Sanna is into sport and played soccer when she was younger. She also did ballet and figure skating (and she was a figure skating coach!). So she went along on Monday to play squash. She never played before, but really enjoyed it and was quite good for somebody who played it for the first time. I think she will be giving Terence a run for his money soon! :-).

On Tuesday, Sanna, Bianca and I went to the Child Cancer Foundation as they had morning tea and crafts for the kids. Bianca and Sanna made a necklace and Bianca also made a door hanger. Bianca loved playing with the various toys they have.

Tomorrow night Sanna will be babysitting and Terence and I will go out - probably to the movies and then supper.