Day one in hospital

Firstly, I just want to say thank you so much to all of you for your messages and emails and for keeping us and the situation here in Wellington in your thoughts and prayers. It really means a lot to us to know that we have your support. Thank you very much.

Bianca wasn't really in the mood to play today and instead asked to watch videos. Kate, the play specialist has a great collection of some really good kiddies videos so it is always fun to go "shopping" for videos from her collection. Bianca didn't have an appetite and I found myself reminding her to eat again and again and again and finally gave up and offered breakfast cereal instead which she mostly ate. Within a week or so she lost approximately 1 kg and is sitting at 18.65kg. I just hope she does not lose any more weight because I really really don't want her to get her nose tube back again.

Yesterday was Day 50 of the standard interim maintenance phase that we were on and the last day of chemo for this phase. This phase is 56 days long, so if all goes well and Bianca's counts are not too low, then she is due to start chemo again next week as part of the Delayed Intensification phase.

Today they also did another blood test to check her levels, whether she needed a transfusion and also to check the CRP level (which I understand is an indicator of whether there is an infection or not). Yesterday it showed up quite high, so it does look like she has some kind of infection somewhere, but not sure what as yet. Today's test would have showed whether the antibiotics she is on is working, whether the levels are going up or coming down and so on. We will be in hospital until at least Friday because of the course of antibiotics. Hopefully Bianca will be able to come home this weekend. Today Bianca asked if Caitlyn was crying and I said that I am sure she is not crying unless if she is hungry or tired (Caitlyn was with Sanna at home) and then Bianca wanted to know if Caitlyn was missing Bianca. Sanna has a community education course on Wednesday evenings so met Terence at his work and then Terence and Caitlyn came through to the hospital. Caitlyn was so excited to see Bianca and Bianca kept asking to hug and kiss Caitlyn.

Bianca was absolutely thrilled to receive a beautiful quilt from a lady who makes these and donates to some of the Child Cancer Foundation kids here in Wellington. Liam's one had racing cars and Elijah wanted drums on his (if I am not mistaken). They asked Bianca what she wanted on hers and she asked for "cats, flowers, pink, yellow" and this lady managed to incorporate it all. This was really special and once I have her name, will update it here. So a big big thank you!!!

Yesterday while we waited in the Treatment room before we were admitted, Bianca gave her baby a "check up".

Here is where they put the line in Bianca's port-a-cath, she never likes it. It is not sore because the skin is numb (we use Emla cream).

2 Minutes later and Bianca is fine again. This now allows them to draw blood, administer IV fluids / medicines, do transfusions and so on. It usually stays on for the duration of her admission.

Bianca also needed an X-ray (as the previous infection was a chest infection). Bianca knows to stand still when it happens (and to be honest after 11 X-rays to date, she is pretty used to it by now).

They also did a side one. Daddy helped her to stand just right.

Today Bianca didn't want to do anything and chose to watch videos. Here is Bianca and Baby.

Of course Kate, the play specialist has this magic touch and always gets the kids to smile.

Bianca likes helping and here Nurse Sue asked Bianca to help "clean" the line so that they could administer antibiotics. Of course just before she administers it, she cleans it herself.

Bianca has another two types of antibiotics that she has to take orally. One is every night and the other is twice a day, three times a week. Bianca is really good at taking these herself.

Bianca admitted into hospital again

So once again, I am reminded that we just should not get comfortable. The whole day Bianca was pretty grumpy and wasn't interested in food. So this afternoon at 17:00 Bianca felt quite hot and I took her temperature. Sitting somewhere between 38.2 and 38.6. Waited 10 minutes, took another reading, still the same. So I phoned Terence (he was still in the city) and then I phoned the hospital to let them know that we were going to bring Bianca in.

When we got there, it was a bit cold and windy outside so when they took her temperature it sat at 36 - 37 degrees, but 15 minutes later shifted up to 38 degrees again.

So there we sat, they first had to put the line into her port. She doesn't like this bit at all and usually cries for a little bit. It isn't sore because we put Emla cream on and that numbs the skin, but because Bianca doesn't like the thought of it. However it is really easy to distract her and then it is all forgotten. They drew a blood sample and then sent it off to be tested.

Bianca watched Dora the Explorer while we waited.

Eventually they said we would have to be admitted - Bianca has some kind of infection. We don't yet know what, but she had to go for an X-Ray tonight. So now we are in room 12. Terence will now once again spend the evenings at hospital and then during the day I will be there. Thank goodness for Sanna, she looked after Caitlyn tonight and this means I don't have to take her to the hospital with me every day. Thank goodness. Now that she is mobile, I just don't think she would enjoy being strapped into the pram or stuck on a boring bed.

So here we go again, I just hope the stay will be short. I'm just so glad we can still be treated in Wellington and that I don't have to go through this all by myself.

How we have managed to cope so far

The past week we have seen a lot of media coverage on the child cancer crisis here in Wellington. It feels really frustrating that parents are already fighting really hard, challenging battles to get their children healthy again and now have to fight a battle to keep the service that is supposed to help them get their kids better.

To the outside world our situation may seem pretty easy - Bianca is standard risk, doesn't experience many side-effects and overall seems pretty happy and it is hard to tell (apart from having no hair) that she is actually sick. And certainly, because this phase was pretty uneventful our situation seems pretty average in comparison to some of the others. But it is definitely not an easy journey. It is hard and challenging. Yes, it is manageable, but not easy.

Now that Dr Anne resigned (and we really don't blame her at all), we feel quite stressed as they have only just started the recruitment process to hire not only one, but two paediatric oncologists. We don't exactly have a large number of those specialists sitting around in New Zealand and waiting for opportunities to come up.

So initially we probably won't be much affected as the shared resource from Christchurch should be able to assist us. Of course, the worry in my mind is "what if they can't find anybody?" Then I have this tiny little voice in the back of my mind saying "then they will have to close the unit". If that had to happen, then the only thing I am praying for is that the future visits will only be short ones, quick ones, but then even after Bianca completed her treatment, she will still need to be monitored for a long long time thereafter to make sure the leukemia doesn't come back or that another cancer does not develop.

Of course it is easy to say "don't worry about it now", but if I don't consider that the unit might close, and it happens, then I wouldn't be prepared. So to me it makes sense to have this possibility in the back of my mind so that I am emotionally prepared and ready to make a decision.

Of course we did not have a very good start and ended up spending so much time in hospital. Being there for 34 consecutive nights (part of a total 56 non-consecutive days) and during those 34 nights, I had Caitlyn with me during the day for 3 weeks as she could not go to daycare. So not only one sick child, but a baby with her own demanding needs. It was hard and I was so grateful at the end of the day when Terence came to the hospital from work just to have a break. Living like that is no fun, I would stay with Bianca from early in the morning right through until Terence finished work, then I would have a short break and then I have to go home, feed and bath Caitlyn, put her to bed, do washing, iron clothes for Terence and Bianca, pack hospital and baby bag, wash bottles, and so on. And of course get up in the night for Caitlyn. Then tomorrow we would do it all again.

If Bianca needed to stay in another hospital far from us for long periods of time, then we would have no choice but to move. Recently Terence was away for just a bit more than a week and every day Bianca would ask when her dad would come back, she became quite emotional, clingy and sad. Bianca has such a very close relationship with her baby sister and if we had to take that away because we couldn't all be in the same city, then they would lose that close bond. Caitlyn is too small and at the end of Bianca's treatment Caitlyn will be nearly 3 and will have no memory of right now so it is really important to us to let Caitlyn spend as much time as possible with Bianca. Her whole face lights up each time she sees Bianca and Bianca just absolutely loves being a big sister.

Unlike a lot of the other parents, we don't have any other family here in New Zealand. We just have us, so if we had to split up because the unit had to close down, then we will have to do this with no support whatsoever.

Because we have remained together we have managed to bring a sense of normality. We have managed to focus on positive aspects and not just revolve around Bianca being sick. Even when Bianca was still staying in hospital, it made such a huge difference each time she was able to see all of us and spend some time with all of us (even if it was just a little bit of a time). She was able to have visits home from time to time and she had renewed energy when we had to go back to the hospital.

Life with leukemia is isolated - not by choice, but because we have to be so very careful that Bianca does not develop infections. Little things that did not matter before (like a runny nose) could now become quite serious. She is not able to do the things she used to like swimming or ballet and it is heartbreaking that she keeps talking about having to stay away from sick people and "when I am all better I'll be nearly 7". We can't plan anything anymore and we now live life each day at a time. A simple thing like going to the shops have to be thought through.

What the CCDHB forget is that whilst Bianca is a patient on their books, it really affects us as a family. This is not just an operation - in, out and over and done with, it is a 2 year process, a lifestyle change and sometimes I wonder what we will look like and what we will be like at the end of it. We work so hard to provide a happy and stable home to our kids, that to be forced to "split up" would just be so unfair. They really have to consider the emotional aspects of it and what Bianca will be like if they had to take the little bit of stability that she has left away from her.

At this hospital the nurses and doctors have become friends. It took us a really long time to get to the point where she is actually excited to visit the hospital, in the beginning she would scream each time they just brought in the blood pressure machine and today she holds out her arm and even wants to press the buttons herself. So for her to have to get used to new people and a new place would just be so difficult and really so unfair.

I truly believe that Bianca is coping well, because we are in a position where we can incorporate "normal things" into each and every day. We are able to find things to laugh about, we are able to let Bianca do big sister things. Terence and I feel happy because we have each other (even if we have to stay at Wellington hospital, we can still see each other every day) and that has a positive effect on Bianca.

I really wish the CCDHB would take notice of these aspects and realise that there is more involved than just treating her to get better. There are no short-cuts, the treatment will take 2 years and 2 years is a long time for a little girl to get through.

We have made the decision to stay positive throughout this process. We will take one step at a time and we will get through it. But it will be so much harder if we were not in a position to stay together. I really feel so sorry for those parents who were forced to split up their family unit for long periods at a time. It really is so very unfair.

Bianca had a bit of a high temperature on Sunday

So there we were yesterday and Bianca felt a bit hot. We took her temperature and got different readings, but some appeared to be quite high – at times above 38 degrees. A high temperature could indicate an infection. One of the things they always recommend is to have a hospital bag packed at all times (for just in case).

During this Standard Interim Maintenance phase things have actually gone quite well and to date haven’t had any hospital stays. So of course we became quite comfortable and don’t have a hospital bag packed. So as I stood there with a sinking feeling in my stomach gathering clothes to stuff into a bag, all I could think about is that I desperately did not want to stay in hospital again. Those endless days in the hospital with the machines beeping non-stop are still fresh in my mind and I hoped that when we were discharged the last time, that we said goodbye to hospital stays for a long time. But of course, things don’t work like that in “our world”. And then off we went to the hospital. Got there and went straight into the treatment room (the magic room full of all sorts of noisy toys that they use for distraction). Bianca’s temperature was lower than at home, but they did a finger prick anyway just to check her levels. We have never seen results come back that quickly, but were quite pleased that everything seemed okay. They wanted us to wait a further hour to monitor her temperature to see if it was coming down or going up. Lucky for us, it wasn’t going up and they sent us home with the instruction to keep checking her temperature regularly. Phew, big sigh of relief! But once again, just a reminder that we just can’t get comfortable, we have to be prepared.

This morning Sanna and I took Bianca and Caitlyn to Junglerama. Junglerama is an indoor playing area with a big climbing structure, ball pond, jumping castle, huge inflatable slide and so on. We went really early. Even though Bianca’s neutrophils are not exceptionally low, we still have to be careful with possible crowded indoor places, so this morning went before large crowds of runny nosed kids arrived.

On the way, Bianca said she was thirsty and I said I would get something for her at Junglerama. She said “water please”. I made a joke and said “Oh I was going to get you a coffee or a beer” and she turned to me saying “No, that would make me very fat”.

Bianca had lots of fun playing and she made Sanna go on the slide, climbing structure and so on. So I think Sanna got a bit of a run for her money. Everything was new to Caitlyn and she quite enjoyed it.

New addition to our blog

We now have a photo gallery at the bottom - just scroll right down to the bottom and you will see it there. You can click on it and it will show all the photos that we have put in our blog from the start. Each time we add photos to our blog, it will also add it to the galleries. We are in the process to add captions to the photos.

A trip to the ballet

Last night Sanna and I went to see a theatre performance of the Imperial Russian Ballet Company and they performed the "Festival of Russian Ballet". These tickets were kindly donated to the Child Cancer Foundation and then allocated to us. It was at the Wetpac St James Theatre and it looked absolutely stunning on the inside.

The programme:

ACT I
Highlights from… Don Quixote; The Dying Swan; Carmen; Gopak; Le Corsaire; Ne Me Quittes Pas; Giselle; Can Can Suprize

ACT II
Bolero (Full Length)

ACT III
Carmina Burana (Full Length)

All I can say is WOW!!! I have never seen a live ballet performance before and it was magnificent. My favourites were the "Can Can Surprize" which was very funny and "Bolero" was fantastic and very very dramatic.

I also saw Elijah's mom and granny and Liam's mom and dad at the performance.

A big THANK YOU to the Child Cancer Foundation for sharing those donated tickets with us, it was a wonderful experience.

A little bit about Kyah

In the beginning when we were in hospital we met another couple (Shanell and Jason) and their little girl Kyah. Kyah is such a cute, gorgeous little girl. Soon after, they were given really really short notice to move to the Christchurch hospital, so they were still coming to terms with the news and "bang" next big "surprise" - they couldn't help them at Wellington. So basically Shanell and Kyah spend their time in Christchurch and Dad and the two boys stay in Wellington. I think that must be so incredibly tough. When Kyah is well enough to stay outside the hospital, they often still can't come to Wellington, but then stay at the Ronald McDonald house in Christchurch.

Their situation is much more tricky and difficult than ours. Kyah has neuroblastoma. As far as I know it is stage 4. Right now they are going into the next phase which is surgery. Please will you keep them in your prayers and thoughts!

Kyah already has more than 430 beads (remember that it is one bead for everything that happens) - we have 331. So in comparison, we have it so much easier than them and their treatment is so much more intensive than ours.

We have a whole article in the newspaper

On Thursday I told you that I was asked some questions by The Dominion Post and we had a photo shoot. Well, click here for the article. We have been lucky so far that we have not had to move to Auckland or Christchurch, but now we are not 100% sure if that will change or not with Dr Anne's resignation early next year.

In the beginning we had a very very long hospital stay - one admission was 34 consecutive nights in hospital, with most being in isolation and during that time Bianca couldn't come home because she needed to be on oxygen a lot of the time. She even had a bronchospasm and that was a real big worry for us. This was all because of a viral infection that we just could not get rid of.

So for us if Bianca needed longer periods of treatment elsewhere we would have to consider moving as a family - I just would not be able to separate Bianca from her dad and baby sister. The problem is that Christchurch and Auckland are not day-trips, they are too far away from us and the cost of travel and accommodation would only be covered for Bianca and one caregiver, so if the family wants to get together, then it means extra cost.

Even when Bianca stayed in hospital in isolation before, it made the world of difference to Bianca just being able to see her mom, dad and baby sister on a regular basis. She was happy to have only one of us staying with her, but we were still able to let her be involved with Caitlyn to some extend (i.e. helping with feeding) and that brought some sense of normality. During that time we managed to get maybe 2 visits home in between anti-biotics so being close to home meant she was able to "visit" home before she had to be back at the hospital to stay.

I have such great respect for people (and my heart goes out to them) who are already in the position where the child and one caregiver have to be in Christchurch or Auckland and the rest of the family stay behind in Wellington. I would have found it so hard if I did not have a break every so often from those hospital walls and Terence was able to help out with Caitlyn so that really made a huge difference otherwise I think I would have gone crazy.

Bianca's photo is in the newspaper

Here are some more links to news articles.

Dominion Post (this one is similar to the next one below and has a photo of Bianca that I supplied)

Dominion Post (this one has a photo of Bianca - one of the photos we supplied and I am quoted in the article) - this is not only about us, but the situation in general.

Dominion Post (this one is about a young boy who has to travel to Auckland every 3 weeks to get treatment that if Wellington had enough resources could be treated locally).

If you know of any paediatric oncologists looking for work in New Zealand, tell them to apply!! Here is the link to the job listed on the CCDHB website. I understand there are only approx. 10 in New Zealand, so they are considering overseas applications.

So until they get 2 new Paediatric Oncologists it will be a bit of a stressful time for all of us as we are not 100% sure how Dr Anne's resignation will affect us. There will be a further meeting in January just before she leaves to discuss the process going forward.

Please pray that things will work out!

And it is all over the news!

Here is another link to the story about Bianca's doctor resigning and it features some of the children currently being treated. It was on the news.

This one opens as an article, but you can click on the "video" button if you would like to see the video:
TV3 News

This one opens as a video clip:
Campbell Live

Today I had a call from one of the newspapers (The Dominion Post) and they asked me some questions, we also had a photo shoot with their photographer and I will let you know if we get published.

Terence went to the meeting tonight and the CCDHB still assured everybody that they are committed to making it work in partnership with the Canterbury District Health Board. They have now actively recruited for 2 Paediatric Oncologists. I understand that in New Zealand we have approximately 10 paediatric oncologists so they are looking to recruit from overseas as well. If they can't make it work (and until they do) all complex and new cases will be sent to either Auckland or Christchurch.

Fingers crossed they can make it work. This has such a huge impact on the cancer kids and their families. When the problems all started in July, there was a little girl and her family. They were given something like 48 hour notice to pack up and be admitted to Christchurch hospital. The dad and the two sons live in Wellington and the mom and their 2 year old stay pretty much permanently in Christchurch. So not a very pleasant situation...

Newspaper articles

Today the news of Dr Anne's resignation was in the newspaper - the New Zealand Herald and the Dominion Post.

Click here for the link to the article in the New Zealand Herald.

Click here for the link to the article in the Dominion Post.

Terence is going to the meeting tonight and hopefully we will have a few answers. It feels so unfair that we have to worry about our children's health and then we now have to fight to keep a service in Wellington.

Got a bit of a shock today...

The Child Cancer Foundation sent an email a few minutes ago letting us know that Dr Anne Mitchell, Bianca's oncologist, has resigned and will be leaving end of January 2008. This is a bit of a worry, because as it is we are supposed to have two oncologists, and a while ago one of the two, Dr Liz Hesketh resigned - leaving the unit short-staffed. That meant that all complex and new cases were referred to Auckland or Christchurch. Recently the CCDHB (Capital and Coast District Health Board) started discussions with the Christchurch Health Board to see how they could work in partnership to retain the tertiary service in Wellington for the Lower North Island.

They have now actively started advertising for a new Paediatric Oncologist to replace Dr Liz and they are working towards a solution. So Dr Anne's resignation came as a huge shock and we have no idea if and how this will affect us next year.

So tomorrow night Terence is going to a meeting to see what they have to say and to answer whatever questions everybody may have.

Bianca is so used to everybody at the hospital, so now she will have to get used to a new doctor all over again. It just makes me realise once again that this journey is full of twists and turns...

Will let you know as soon as I have more info.

Everything still fine.

We are still busy with the Standard Interim Maintenance Phase. This phase is 56 days long and we are currently sitting at day 43. Went to the hospital today for a blood test. It was quite a long wait and lucky her results were good enough so we didn't need any transfusions. Her neutrophils are busy coming down so we will need to be a bit more careful for the next little bit.

Providing her levels are high enough we will start the Delayed Intensification phase beginning November. This will also be 56 days long. This phase will be more intense and I am expecting Bianca to be neutropenic more often. I am dreading this phase because Bianca will most probably get 6 different injections into her leg (one a week). This is because she had a severe reaction to the last time she had a similar injection, so this time round a different type of the same medicine, but more injections. I am not looking forward to this. The only thing that we could possibly do is to put ice on her leg and to give her some paracetamol.

They were quite busy today, so I am not sure when they want us to go back for tests and they will phone us.

We now have 331 beads.

Bianca still has a bit of a runny nose, so I am just hoping that it doesn't develop into anything else. It is not yet a worry, but we know that things can change so very quickly.

A relaxing day

Monday was a public holiday - it was labour day. Terence did not have to go to work so we managed to spend the day together - all of us. Bianca was absolutely thrilled that her dad came back on Sunday and of course all the presents he brought, just made her day. The weather was really nice, so we decided to go to Lindale Farm which is at Paraparaumu - about 30 minutes drive from where we live.

It is a working farm that is also a tourist attraction so people can take a farm walk and feed all the various animals.

We saw the cutest little duckling and if we could take it home, well then we would.

There were also really cute little lambs.

Sanna has never been up close to some of the type of animals on the farm and she thoroughly enjoyed it. She tried to be brave and feed them by hand, but every so often they would make a sudden move or they would be a bit boisterous trying to get to the food, then she would get a bit of a fright. And of course we just laughed so much.

We also saw the farm show. Here they discuss the New Zealand wool industry and they also shear a sheep. And of course the best part is getting a hands on experience milking a cow and feeding a lamb.

Lunch was great and we also visited the various shops they have.

Sanna was looking for salty liquorice and we can't get this in the normal shops. She was looking for extra extra extra salty, but managed to find double salty. She said it was okay, but she will ask her mom to send her the real stuff. We tried a piece and man, it really hits you! I cannot say that I will ever get used to the taste.

A little bit of a worry

So today Cailtyn had a bit of a tummy bug. Well, it looks suspiciously like a tummy bug with her throwing up her lunch and then all the way to the airport to get Terence. Sanna just changed as she wanted to go to the Botanical Gardens and I was busy putting Caitlyn's car seat back in the car and then put Caitlyn in her cot during that time. Sanna picked Caitlyn up because she was fussing and then without warning got sick all over Sanna and the carpet. Typical Murphy's Law - just as you are about to go out, then things happen. This evening she tolerated her milk bottles quite well so I'm hoping that was the end of it.

And then tonight at bedtime we noticed Bianca had a runny nose so now we will keep a very very close eye on her and check her temps regularly and hopefully this does not develop into an infection. An infection means staying at hospital for at least 2 days so they could check her blood to see if anything develops and then she will be on yet another antibiotic. Currently she is getting 2 as it is - fluconozole every night and then co-trimoxozole twice a day on Tuesday, Wednesday and Thursday.

Bianca didn't need a blood test last week and only need to go this coming Tuesday, so I have no idea what her neutrophils are sitting at. But if all of a sudden they dropped really low, then Bianca might have picked up a bug or two. The last time they were really high, so whilst still relatively careful, we had a bit more freedom.

So I am hoping and praying really hard that Bianca does not get sick and we have to go to hospital. I really really am not in the mood!!!

Caitlyn is nearly 8 months old

Today Chelsea came to play with Bianca. Bainca enjoyed it and the girls had lots of fun. Bianca is missing her dad quite a bit, but she received 2 postcards he sent all the way from Australia. The one had 2 Koalas and the other some Kangaroos. Terence will be back on Sunday afternoon.

Today I had to tie up a little bit of Caitlyn's hair as her fringe is hanging in her eyes. I don't really want to cut her hair just yet. Caitlyn is 8 months old on Monday. I cannot believe it, time really just went by so quickly. She is in a very good routine at the moment and the past 3 nights slept through completely. This morning she woke up at 6:30 and muttered to herself until 7:30 when she "called" me. I hope it lasts... :-).

Just a quick note on some of the changes on our blog:

Posting Comments
You now have the ability to post a comment on any specific entry. Not the old ones, but all the new ones. You will notice at the bottom of each post "comments". Click on this. Now type your comment in the available space. Select one of the three options. The best option is to choose "other" because then you can put your name in the required space. Don't worry where it is asking for a website. You will have to type the "funny" text the way it is i.e. in lowercase if that is the way it is on the screen. This is just to make sure that the comment is not automated spam. Then select publish comment.

Links
We also have links towards the bottom right of our blog. This is where we will be putting relevant and interesting internet links. Feel free to suggest relevant and interesting links if you want to.

The things the girls got up to

Caitlyn now has a tiny bit of a tooth coming out at the top. That makes 5 teeth. It also looks like there will be a second one coming out at top very very soon. She loves bouncing and would sit and bounce in her high chair or if I hold her "standing up" on my lap then she would bounce up and down.

It looks like Bianca's hair is busy growing back. It looks like it is very likely going to be blonde again. Bianca was hoping for dark and curly, but I think it will be blonde and not sure if it will be curly again or straight this time. I'm not sure if she will lose it again, so we will just have to see.

Sanna invented a game where every time we need to put Bianca's shoes on we have to pretend it is a glass slipper we found and the person it fits is the real princess. Today Bianca took Caitlyn's one rattle and came to me saying "I found this rattle on the stairs and if it likes you then you are the real baby" She put it against my arm and said "no, you are not the real baby". She then did the same with Sanna. Then she went to Caitlyn and did the same and then said "Yes, you are the real baby".

Canteen Appeal Week

It's Canteen Appeal week this week, so if you are looking for a worthwhile organisation to support, then go out and get a bandanna. Yesterday I bought some bandannas for us in support of Canteen. "Canteen is the New Zealand organisation supporting young people (between the ages of 13 and 24) living with cancer". Not only people who have cancer, but also their families who are walking the journey with them. If you scroll down this page, you will notice on the bottom right I have a section with internet links and you would be able to click on the link for Canteen.

Here are some photos of us wearing our bandannas. Terence also has a bandanna, but he is still in Melbourne and will be back on Sunday. Sanna chose the same design as the one I am wearing and she was the photographer. I will have to get a photo of her wearing hers...

The one I am wearing is one of two designs by Dan Carter and has his signature on it. It was quite a procedure to get the bandanna on Caitlyn's head, to stop her trying to pull it off and to look towards the camera all at once.

A visit to the park

Yesterday Sanna took Bianca and Caitlyn to the park. The weather was really nice and so they ended up being the first people in the park. The other day when they also went to the park there was another little girl and this little girl had chocolate frogs. It is chocolate in the shape of a frog. Bianca then asked Sanna to ask the little girl if she could have some. So Sanna did and the little girl shared. Yesterday when Bianca and Sanna were in the park before all the people arrived, Bianca had some chocolate frogs. She turned to Sanna and asked "can we share some chocolate frogs with the other children"? Sanna mentioned that there were no people in the park. When eventually another little boy arrived at the park, Bianca insisted to walk over and share some chocolate frogs.

Yesterday evening Caitlyn was crawling down the corridor. Bianca was jumping around and being silly and Caitlyn laughed so much. I say thank goodness for big sisters!

Usually Caitlyn wakes up once a night. Usually because of a dirty nappy. Last night she slept through the night and started muttering at 6:10 and finally called me at 6:45. I am typing this really softly so that Caitlyn doesn't hear and then maybe just maybe she might sleep through again tonight. :-).

Bianca is still doing really well and enjoying staying at home. This phase was a pretty good phase and her levels were not too low. Next phase will probably be a little bit more tricky and she is more likely to become neutropenic. This is when her levels become too low and her body's ability to fight infection disappears. That is when we have to be especially careful around lots of other people and have to avoid shopping centres and things like that. For most of it we have to be careful anyway because things like chickenpox or measles are really bad for her and she can get those again and of course the problem with that is that people are infectious before showing symptoms.

Bianca the big sister

Yesterday afternoon Caitlyn was a bit difficult. She didn't want to sleep at all and Sanna tried for nearly an hour. I was out at the time. So when I came back, Sanna was in the room with Caitlyn and Bianca came out of the room telling me that Caitlyn didn't want to sleep. Sanna mentioned that Bianca at some point said to Caitlyn "Caitlyn, go get some new friends!".

This morning I woke up. Not to the sound of birds chirping or the wind blowing or the rain against the windows. It was quiet outside (except for the faint sounds of the builders hammering their way to a new completed house). I woke up to Bianca’s voice in Caitlyn’s room, which is just opposite from our room. “Caitlyn, Caitlyn, your big sister is here”. I asked Bianca afterwards and she said that Caitlyn was already awake, but looking away (I think Caitlyn was woken up by Bianca). It doesn’t really matter because it was the usual time that Caitlyn would have woken up anyway. So I stayed in bed listening to the two of them chatting away.

It sounded as if Bianca passed something to Caitlyn and then said “Ta” to get it back. Bianca then said, “no, not your hand, the book”. Then Bianca said “ta” again and then a bit louder “TA!”. Finally it sounded as if Bianca offered Caitlyn something else and she managed to get the book from Caitlyn. Bianca then read Caitlyn a story “Mrs Wishy Washy”. I was amazed how she read it correctly, but I suspect it was recited from memory rather than actual reading, although there are several words that Bianca is able to recognise when we read stories.

At one point Caitlyn cried a little and Bianca said “It’s okay Caitlyn, your big sister’s here, it’s okay”.

Then shortly after that Bianca “woke me up” to let me know that Caitlyn had a dirty nappy and that I should change it. And that was the end of my lie-in.

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.