A cold September day

Today was really cold and windy. Sanna says the weather is very similar in Sweden so she is used to it.

We kept Caitlyn out of daycare today as she had a bit of a tummy bug. So last night was a bit of a rough night. Caitlyn is getting quite impatient as she really wants to crawl properly now and you can see that she wants to but doesn't quite know how to get it right.

Yesterday Bianca and Sanna baked cupcakes and Bianca had lots of fun. At the moment Bianca's favourite game is playing "The three Billy Goats Gruff". So then Bianca and Sanna each take turns playing the Billy Goats Gruff and the Troll waiting under the bridge. Today Sanna made alphabet letters on little square pieces of paper and Bianca had to put it all into order. So she would sing the "A, B, C" song to decide which letter will be next. She is really good with her letters and even her sounds of letters.

So far we are lucky and we are still at home. It is really good to be home.

An exciting weekend and now we are five...

It was my birthday on Friday 21 September, thank you so much to all the nice wishes I received. Also thank you very much to Catherine for the beautiful flowers, Amanda for the really nice book on creating your own artwork and to Riki for the book and the crosstitch kit, I really appreciate it.

Terence surprised me and booked a flight to Auckland for me. He booked me into the Stamford Plaza and he also booked a ticket to see a theatre production called "Murder by Chocolate". I was completely surprised, but very excited. I can't remember when last I had a break with just "me" time.

So in the morning I had to quickly pack, then we dropped Caitlyn off at daycare and then Bianca, Terence and I went to visit Bianca's friend Georgia and her mom Catherine for a play date. Bianca had a really nice time and the two girls enjoyed playing outside.

The flight to Auckland only takes an hour and then a further 45 minutes or so with the Airport bus to the city. Lucky I could still pretty much remember Auckland from when we lived there back in 2004 / 2005. It really brought back some memories.

On Friday afternoon I checked in and then decided to go and visit the staff at PFL (a shipping company in Auckland where I worked as a temp for approx. 6 months when I just arrived in Auckland). It was good to see them and to see many familiar faces still there. Of course there were also a couple of new faces.

I went to the theatre production in the evening and it was quite weird, but had a number of funny bits in it. I quite enjoyed it and it was a very interesting layout with the stage at the bottom almost like at a stadium.

On Saturday morning I quickly did some shopping (I promised to bring back some little gifts for Terence and the girls) and then I took the ferry across to Devonport (just 15 minutes or so). Once again, all familiar because we often went to Devonport when we lived there. Afterwards I visited the Sky Tower - a really high tower that people often "jump" from - well not really jump, because they are attached with ropes and then they come down in a very controlled manner. I did not go all the way to the top and certainly did not try the whole "jumping" thing.

Here is a photo of the Ferry Building.

Here is a photo of the Sky Tower. The ring at the top of the photo is where people "jump" from. See the ropes to the left of the photo.

Here is a photo of Auckland CBD taken from the Ferry on the way to Devonport. See the brown building on the right of this photo just behind a small white building - that is the ferry building. Now look at the tall tower, that is the Sky Tower (just to give you an idea of how tall it is).

The rest of the time was spent sightseeing in the CBD, relaxing in the Spa Pool at the hotel and otherwise just doing nothing much but take time out.

The hotel was really nice and much more than I expected. I especially enjoyed the breakfast buffet - it had so many options to choose from.

On Sunday morning at 10:00 I flew back to Wellington. When I arrived just after 11:00, I finally met the new addition to our family...

Meet Sanna.

Sanna is our Au Pair. We decided to find a solution so that we could take Caitlyn out of daycare. This way we are hopefully able to avoid Caitlyn picking up bugs and passing them on to Bianca. And hopefully then we are able to minimise our hospital stays. So we were looking at a couple of options. We initially considered getting an Au Pair but it turned out to be quite an expensive option so told the agency that we would rather consider one of the other options. So then last week we got another message from the agency and she offered us a discounted price because the Au Pair she wanted to introduce was already in the country. Well, we had a telephonic interview and we decided it would be a good match and of course would now fit in with our budget. So on Friday night she arrived by bus from Hamilton. I wasn't there to meet her and so Terence and the girls spent the weekend showing her around a bit and making her feel at home. So far Bianca has taken so well to her, so we are quite pleased about that. For the next week or so, Caitlyn will still be in daycare as we need to give notice of our intention to take her out of daycare and during this time Sanna will be able to really get to know Bianca and her situation.

Sanna is from Sweden and she is now 20 years old.

Monday was a very long day

On Monday morning we had to go to the hospital for a finger prick and to find out if we could continue with the chemo. So first I dropped Terence off at work, then Caitlyn at daycare and Bianca and I arrived at the hospital at 8:50.

They had to do 2 finger pricks as the first one did not give enough blood. Then we waited for the results. Eventually after a really long wait, the results came and they decided we could continue with the chemo that night. They also realised that Bianca needed a blood transfusion. So then we needed to put Emla Cream (it numbs the skin) on her port. That took an hour an then they managed to draw more blood (they needed more than you get from a finger prick). They then had to cross-match the blood and order it.

In the morning, we waited with Chelsea and her mum Bonnie and Liam and his mum Katrina. Liam is approximately a month ahead of us with treatment and he is a few months older than Bianca. Chelsea was diagnosed the same week as us and she is a few months younger than Bianca. Bianca, Liam and Chelsea have Acute Lymphoblastic Leukemia.

Liam had to wait 3 hours after his injection to see if he might develop an infection or not so he was put in a room with 2 beds. They invited Bianca to watch videos with Liam in his room. They watched a movie about Donald Duck and Bianca giggled a lot and that was so funny. Click on this video clip to see and make sure you have sound.

Here is a photo with Bianca and Chelsea.

Bianca and Liam watched some video and then played with some toys that Kate left for them.

Eventually at 15:25 Bianca's blood arrived and they started the process. Terence had to meet us at the hospital and then he left to get Caitlyn before daycare closed at 17:45.

Bianca watched The Little Mermaid, Elmo in Grouchland (which she thought was quite funny) and also a video about life at Auckland zoo.

Here is Bianca feeding Caitlyn her supper.

We eventually left the hospital at 22:00.

This morning Terence received Caitlyn's passport. He realised they put her down as "male" (and here she is wearing a bright pink outfit in her photo). So lunch time today he went back to them with a cover letter requesting that they change it from male to female. It was over lunch time and Terence waited only 5 minutes in the queue. The staff member apologised profusely because it was their mistake and then he got the supervisor (who checked it and missed the error) and the supervisor apologised as well. We don't have to supply any more photos, it will cost us nothing to get a new correct one and they will fast track it. The good service in this country continues to amaze me.

And we are still at home

Bianca is doing pretty well. Earlier in the week Bianca started chemo. This is the beginning bit of our maintenance treatment and it is expected that she will get treatment until 2 years from the first date of this phase which is called "Standard Interim Maintenance". This phase will last 8 weeks, the next is called "Delayed Intensification" and then "Standard Maintenance" and it is the "Standard Maintenance" that will be repeated for 2 years until the first date of the "Standard Interim Maintenance". So providing no delays and no problems or setbacks we are hoping to complete her treatment by September / October 2009. Of course none of the dates are fixed and these phases are often count dependent, which means that her levels need to be at or above a certain level before moving on. Of course afterwards she will still need regular check-ups and blood tests and I presume this will be an ongoing thing going forward.

On Thursday we had to go in for a blood test and they just do a finger prick and then squeeze a little bit out which they then test. Bianca did not even cry and was happily playing with Kate, the play specialist, while Jo did the finger prick. Jo is one of the nurses, but only works with day cases and not admissions. Bianca calls them "Playing Jo" and "Playing Kate". There is also a Nurse Kate.

They realised her levels were actually too low and they shouldn't have started the next phase. They need to allow time for her levels to recover before starting a new phase of chemo. So we had to stop the chemo. We continued with the 5 days of dexamethasone. This is a steroid and not a chemo drug and a side effect is that it boosts her appetite. The first time she went on this we were not at all prepared, but soon realised that Bianca would easily eat as much as an adult and then an hour later would be hungry again and then she would be up at 3 in the morning wanting food to eat. At that stage she was on it for 28 days. This phase, she is on this for 5 days (today was the last day) and then again 5 days later, so we did not feel the effects as bad as the first time. We are due for another blood test on Monday to see if we will continue chemo on Tuesday.

Here is Bianca just after we arrived at the hospital. My mother made her this beautiful beanie, mitten and scarf set making Bianca look like a cat (she loves cats and one day we will have to get a kitten).

We were waiting for Jo in the treatment room and Bianca loves playing with the train. You can see the train at the top (top left).

Jo and Bianca had to choose a finger for the finger prick.

Bianca and Kate played some games while Jo did the finger prick.

Bianca also had to have a blood pressure check, and she loves pressing the button herself.

They usually check her temperature with every visit, but Bianca decided Kate needed hers checked first.

On Thursday night I went to the local shopping mall as it was late night shopping. Now that Bianca is sick, I try to avoid going to shopping malls with her. I had to buy some more clothes for Caitlyn as she is getting too big for a lot of her current clothes. On the way back I felt pretty sick and that night had a bit of a gastro. So the next day I felt really bad as I did not sleep very much the previous night and I felt cold and sore the whole day.

On Friday night Terence was invited to go and play poker at his squash club. It is not serious or anything and more about the socialising. And basically all the players would pay an entry fee (they then all get the same amount of chips) and the winner wins the full amount. The squash club provided some snacks and people could buy drinks. So it is more to attract people to the club and to enable the players to get together and have some fun. Terence was doing pretty well until almost at the end when he started feeling sick. So it turned out he got my bug and in the end had a pretty rough night.

Today I got a nice surprise. I received a parcel that the post office delivered this morning. They actually came yesterday, but at the time I was lying down and had no energy to answer the door, so they just left a card in the post box saying they were there and that they would deliver again on Saturday. So they came again today.

It turned out that it was a Cross Pen that I won. Wow, I don't think I ever won anything before. This was because I recently submitted a letter to a newspaper. At the time there was a news report of a little girl who was subjected to terrible abuse like being spun on a washing line until she fell off, dumped in an ice cold bath and then put in a tumble drier with the drier turned on. I was absolutely horrified, so wrote about my sadness and disgust that she had to die at the hands of these horrible horrible people.

Later in the afternoon, Terence took Bianca to the Johnsonville park and she had great fun playing on the structures. During that time, Caitlyn and I went to Spotlight. This is a big shop with all sorts of craft and needlework stuff. It also has some houseware stuff like curtains, sheets, rugs and so on. I decided to try out knitting. Just for fun. I don't think I will become really good at it and I don't think I will end up knitting stuff for a living, but I'll make a few things just for fun. At the moment I am trying to knit a skirt for Bianca's teddy. I found a pretty good book dealing with all the basics and then more advanced stuff and this pattern is in this book as one of the basic patterns. So I'll see how long this hobby lasts.

On the way to collect me from Spotlight, Terence stopped at Khandallah (close to Johnsonville) and took a photo of the view - isn't it just beautiful?

Caitlyn is quite mobile, although not crawling on all fours as yet. She is still dragging herself along the carpet, but gets from one side to another pretty quick. She loves banging things now to see what would happen and would especially try this out when she is sitting in her high chair. I usually give her her own spoon to play around with. She really loves solids including small pieces of toast and tonight she ate a whole jar of pasta bolognaise. Of course you have to pretty much give her a bath at the end of it, but she really enjoys it. So far we have only had 2 types that she really did not enjoy, but otherwise, she is pretty happy to eat what we offer.

Terence gets to fly around

Some of you already know that I am working for the National Library of New Zealand as a computer guy (read DBA and system administrator). Well, the technologies we have are quite impressive, so they are sending me on a training course for the big Sun server we have (an E25k). Since we have 2 people from us going and we are in Wellington, and another company in Auckland has 3 people going, the company giving the course is going to pay for us to fly up to Auckland and is going to put us up there for the course. Cool. This will be 4 days early October. I've already told my workmate that if they give us a fixed amount per night for a hotel we'll stay in a backpackers and spend the difference on drinking!

Then the week after that my company is sending me to a training course for one of the products I have to upgrade in Melbourne, Australia!! This is cool as it is a chance for me to see a bit of another country. The training course is 6 continuous days Mon to Sat 8.30 to 5pm (except Sat is to 6pm!!) so I have decided to take 2 days extra at the end to have a bit of a look around and also a bit of a break. If anybody has experience of Melbourne and can suggest some things to see or do drop me an email.

I had to apply for an Aussie visa since I am still on my South African passport - NZ passport holders can just flounce in no worries mate. So Friday I sent in the forms via courier with my passport and a bank cheque and a courier bag on the inside for them to send my passport back in when they are done. Checked on the internet that the package was delivered to them at 7.15 on Monday morning. Then I was surprised when I got into work on Tuesday that the return bag was there sitting on my keyboard!! How is that for a postal service, and a government service? Now I have a business visa to enter Australia as many times as I want in the next year and stay for up to 3 months each time.

Lea was checking my passport and she noticed that our Returning Residence Visa into New Zealand had expired - it was only valid for 2 years. So we are legally here on a Permanent Residence permit which we got within the valid period of the RRV, but as soon as we leave we won't be allowed back in except on a 3 months visitors permit, and then we can't work until we apply again for Permanent Residence and we might be declined. So today I went to the Immigration dept in Wellington to get the RRV renewed for Lea, Bianca and I. Don't need to for Caitlyn, she is here legally as a citizen. Lea dropped me off there on the way to drop Caitlyn off at daycare. I got there at 9.10, spoke to the reception at 9.15 and got a queue number, got called at 9.20 and was finished by 9.30 with RRV's in our 3 passports in time for Lea to pick me up on the way back and drop me off at work. Beat that South African government! Over and over we keep getting impressed by the service of Government departments here. Now we have no expiry RRVs so we are really Permanent Residents of New Zealand.

We have a webcam at home and have setup skype and Windows Messenger (MSN Messenger). Email us if you want our contact details, we'll be happy to chat online to people. We might also start a video chat (one way if you don't have a webcam, then we talk and you type back) if you want.

I was on the train home last week sitting next to someone from my work chatting to them, and after I got off at the station (Porirua station) the bloke sitting in front of us turned to the woman I was sitting with and asked if I was Terence White from South Africa. Turned out to be a guy from my class at school, Mark van Heerden. He gave her his email address and had to write his name down so she would pass it on to me the next day. I've sent him an email and he has written back, we will get together sometime and chat properly. He has been here about 7 years, stays a bit far from us but works close by in the city. He has a 8 month old baby named Molly. Pinky, are you thinking what I'm thinking? Right, baby fight!

Yet another example of excellent service

Today we applied for a New Zealand passport for Caitlyn. We don't plan to travel, but it would be nice to have it. We had to get passport photos taken which was a bit of a mission, because you are not allowed to smile on the photograph, your mouth has to be closed and your eyes wide open and looking directly at the camera. Here is what we managed. We don't have a scanner so I had to take a photo of the passport photo.

So we completed forms and then this afternoon Terence went to Internal Affairs (similar to home affairs). It was over lunch time and there were 3 people working and Terence was 2nd in the queue. 10 Minutes later, he came back to the car with a receipt and a commitment from them that we will get it before or on 24th September. Now is that excellent service or what!

Out and About

This weekend we took Bianca to the Tawa park to ride her bike and feed the ducks. She didn't play on the play structures because she is neutropenic at the moment (which means her levels are really low and she can easily get an infection). She is really good at riding her bike at the moment and we don't have to push her at all and she didn't once fall off. She seems pretty good at steering.

We also went to Plimmerton Beach - approximately 10 / 15 minutes from our house. It was high tide, so didn't have lots of beach to run around on, but Bianca had fun making sandcastles. This was also Caitlyn's very first time on the beach and she had fun playing with the sand and eating some as well. The water was too cold to go into, but it was nice to be out and about.

Last week Terence donated his second batch of plasma. Terence completed forms to list himself on the bone marrow register, so next time they will take a sample. This is just because Terence is able and willing and not because Bianca needs a bone marrow transplant or anything. Next time Terence will also be donating platelets and this is more relevant to what Bianca usually gets.

Caitlyn is doing really well with solid food and she is pretty mobile now - dragging herself along the carpet.

Still at home

We are still at home and it is great! Bianca just loves spending time with her baby sister and it is amazing to see the two of them together.

Bianca has been eating vegemite sandwiches like crazy - several times a day. She calls it marmite sandwiches. She doesn't want any margarine and then it has to be cut into triangles. It is quite strange as she is not on any appetite enhancing medicine at the moment, but we are not complaining as we want to ensure she keeps her weight up and has to try and gain some. So far so good. Earlier in the week she was 18.4kg and now she is 19.2kg. So far she does not need the feeding tube again.

Had a quick visit to hospital today for a blood test. Bianca is quite neutropenic which means she is at high risk of developing an infection (and it doesn't help that Caitlyn still has a cold and I have now developed one). But for now we don't have to be admitted. On Monday we will need to be in for another blood test and then Tuesday will be chemo.

We got two lovely parcels now in the week - one from Terence's dad with an outfit for Bianca and a bath toy set for Caitlyn and a parcel from my mom containing an assortment of goodies and clothes for the kids as well as a very special story book she created and it features her cats. And Terence and I were spoiled as well. So thank you very much!

On another note, yesterday was exactly 3 months since Bianca got her first treatment and we have been here exactly 3 years.

Keep in touch with all your news!

Friday

On Friday, Bianca had to get the nose tube again. This was the 4th time and she really did not enjoy the experience. She was pretty grumpy all day long and ended up sleeping most of the afternoon. Terence arrived at approximately 17:30 and brought Bianca a lego set as a reward for being so brave. We were discharged at 18:00, but only left at approximately 19:00 because Bianca insists on removing the plaster herself (the one on her chest holding the IV line in place).

Later that night when we were ready to start the tube feeding process we noticed that there was a bit of a problem and Bianca's breathing was quite wheezy again. So Terence took her back to the hospital and they spent the night again in room 6.

Saturday

On the Saturday, they did an X-Ray and realised that the nose tube shifted (probably from coughing) and shifted into her lung, so they removed the tube and they were discharged at approximately 12:00. 5 Minutes later Bianca perked up completely and she was a totally different person. In the afternoon Terence and the kids went to Tawa park to feed the ducks. That evening we had a picnic supper on the carpet and afterwards Bianca and I wrapped Daddy's father's day present. Bianca also wrote a "D" in both cards (for Daddy) and a "B" in one (from Bianca) and a "C" in the other (from Caitlyn).

Sunday

It was father's day here in New Zealand and Bianca helped with breakfast and setting the table and she gave Daddy his presents. Later in the afternoon Daddy took his girls to Aotea Lagoon (close to us) where they went for a nice stroll and a play in the park. There was a little train too, but they did not go on it and will maybe next time.