A day to say thank you

Today we are having a little gathering with some of the CCF- and Wellington Hospital staff to say goodbye to them and show our appreciation for everything they have done for us. They are so dedicated and work so very hard, and I hope in our own little way we can show them how much we appreciate everything they do for us. They have become such a huge part in our lives and I know Bianca will love to have this opportunity to have one last day with them.

Well, officially she still has one more day of hospital treatment in Wellington before we move to Auckland, but today she will not be isolated and hooked up to lines and things like that. Today Bianca will spend a little bit of time as a normal kid playing with the people who became her friends.

It will also be a day of realisation when the move will become real to us as we now enter the preparation stages of getting our move organised.

We are so very excited about the services the new hospital is able to offer, but at the same time it will be incredibly hard to leave the people that mean so much to us.

What is red and white, made with love and brightened a little girl's day?

Bianca received a really big surprise from Quilts for Leukemia. It is the most beautiful red and white quilt. A big big thanks to:

• Anne in the UK
• Brigette in Germany
• Clare in France
• Dianne in Australia
• Doris in Italy
• Fiona in the UK
• Geri in Holland
• Jen in Finland
• Nicolette in Holland
• Pam in France
• Simonetta in Italy
• Sue in the USA

They each contributed to this beautiful quilt. Bianca absolutely loved it and she calls it her "favourite" blanket.

If you like quilting or know of anybody wanting to get involved, please go and have a look at the wonderful work Clare and everybody else are doing to "wrap the world in love". They brightened Bianca's day and will each time she sees it or takes it along to the hospital when she has to get treatment and so on!

Thank you, thank you so much!

A special birthday party

Wow, what a wonderful day we had today! We decided to have a birthday party for Bianca. It is not quite her birthday - her birthday is only on the 18th of June, but since we are busy moving to Auckland and since this is not quite winter (so less risk of catching anything), we though to have it today.

We didn't say anything to Bianca because it would be so disappointing if she was excited about it and then for some reason it couldn't happen, so we kept it a surprise. So this morning we told her that she was going to have a birthday party, but we waited until the first knock on the door, before letting her know that she was actually going to have friends at her party. It turned out such a wonderful wonderful day and Bianca had 3 friends at her party. She was absolutely thrilled and so excited.

She wore a very special outfit that my mother made for her and came all the way from South Africa.

My friend Irene suggested I get this big plastic bag that you fill up with balloons and then stick it on the ceiling and then when you are ready, you pull a string which will then let all the balloons fall out. So Terence inflated around 63 balloons. Oh wow, what a great idea!

Caitlyn enjoyed herself also:

Apart from this the kids also played pass the parcel and they each decorated their own t-shirt with fabric markers.

Our friend Siobhan, made the most beautiful cake for Bianca. It was such a big hit! Thank you so much Siobhan, you really brightened Bianca's day!

And then it was time for presents. Bianca kindly allowed her friends to help her open her presents. Bianca received really nice presents, including this beautiful quilt made by some very special people from Quilts for Leukemia (thank you to Anne in the UK, Brigette in Germany, Clare in France, Dianne in Australia, Doris in Italy, Fiona in the UK, Geri in Holland, Jen in Finland, Nicolette in Holland, Pam in France, Simonetta in Italy and Sue in the USA).

Today was so very different to last year. Last year we had it all planned, but when Bianca was admitted to hospital on the 2nd of June, we had to cancel her birthday party and so shared some cake with a few of the other patients in Wellington Hospital. I remember her turning to me at one point saying "but Mommy, my friends aren't coming". The Child Cancer Foundation was so great in helping us make the day as special as possible and they organised all the snacks, balloons and inviting some of the other patients.

The party last year:

Trip to Auckland

I had a very successful time in Auckland and things happened pretty quickly. I arrived on the Thursday and on the Friday had 4 places to go and see. On the Saturday I signed a rental agreement with a place in Albany. It is in a really quiet area and this will be perfect for us, although we are covered if things should change unexpectedly and we have to give 4 weeks notice to terminate the tenancy if we need to, so that is reassuring to us as our journey does sometimes take unexpected turns! We will be in the section with the double garage.

On the Tuesday I visited Starship hospital and managed to take a few photos at the hospital, but didn't take any on the ward.

I went to Brown's Bay which is also on the North Shore and it feels like a typical holiday town, they have a really nice beach and in the distance you can see Rangitoto Island.

My friend Irene took me sightseeing too. Here is the view of the Auckland CBD taken from Devonport.

We also went to Morris and James.

Taken from the plane on my flight from Auckland to Wellington:

Homeward Bound!

Yesterday I got to see Starship Hospital. It is quite an impressive children's hospital with a big indoor play area as you walk into Starship. Bianca will be going to Ward 27B which is the oncology ward and it is much bigger than at Wellington, but then they do treat way more patients than at Wellington. They lent me a DVD about Starship and a little bit about Auckland which I will take back to show Bianca. It seems like a really nice hospital and they have around 6 paediatric oncologists, so we are pleased that Bianca will have access to these specialists. I know that it will be very very hard leaving Wellington Hospital and the people we have met and who played such a huge part in our lives, but at the end of the day, we have this opportunity where Terence will work in Auckland and at the same time this gives us the chance to move Bianca to a hospital with sufficient permanent specialists.

So this morning I decided that since I achieved what I came to achieve (finding a rental home and visiting Starship), I changed my flights and initially I was going to fly back on Saturday, but I am now flying back tomorrow afternoon. I miss the family so much and cannot wait to see them again! I feel so sorry for families who are split up for long periods of time as they get treatment because I've only been away from home for a couple of days and it seems like forever!!!

Mission Accomplished!!!

So it happened quicker than I thought! I found a house in Auckland... in the Albany area. So this week I'll sort out a few things in preparation of our move, visit Starship and introduce myself and get a few things ready for Bianca's birthday party this coming Sunday. She still doesn't know she will be having a birthday party and we will only tell her on the day when we are 100% sure it will definitely happen.

This morning I visited the Forrest Hill Presbyterian Church and it was good to see some of the familiar faces again. We used to go to this church when we lived in Auckland before.

Then my friend Irene, whom I am staying with in Auckland at the moment, took me on a bit of a sightseeing drive a little bit north out of Auckland. It was country-side and so beautiful. We visited a rather dubious pub / restaurant thinking we'd get something to eat. Of course it looked okay on the outside until we were inside, ordered and then sat down. So we ate pretty quickly and left.

All in all, it was just a fun Sunday afternoon outing.

I miss Terence and the girls terribly and can't wait to see them all again. But at least now I have the peace of mind that we have somewhere to live when we move up to Auckland middle June.

Don't waste the good weather!

Yesterday (Saturday) I got to sleep in until 7.30, as Caitlyn had woken up and gone back to sleep again. I had a look outside and saw a day with not a cloud in the sky. It would have been daft to spend the day indoors, so I woke Caitlyn and Bianca at 8.00 and got them breakfasted. Then we headed out north, along with our new au pair Sandrea. Lea had warned me that I needed to be home by 1.30 so I could sort out the payment for the new house in Auckland with internet banking.

Bianca wanted a horse ride and it was pocket money day, so we stopped off at Queen Elizabeth Park where there are horse rides on weekends. She brought a pink straw cowboy hat like Jessie wears in Toystory 2 with, but of course she had to wear a helmet on the horse. We got there a little early but Bianca got her horse ride anyway. This is one of the things we need to source again when we are up in Auckland.


After the horse ride we headed out to Lindale Farm. Sandrea hadn't been to Lindale, and it's a good experience for city dwellers. We couldn't stay for the farm show which starts at 2.00, but we did the farm walk. Bianca bought two dollar bags of animal food with her own money. It was quite a novel experience for Sandrea to see the animals and feed them. They had a set of piglets, a goat and two sheep that were wondering around on the path instead of being in a paddock, which made the walk a bit more interactive. Of course I couldn't let Caitlyn walk loose as she would pick up anything she saw on the ground and put it in her mouth, so I had to push her in her stroller the whole way.
After lunch I put Caitlyn to bed and started getting ready for the afternoon. I decided that since the weather was so nice we could all go to Plimmerton beach for one last swim. I couldn't find Bianca's swimming costume, so she just wore a pair of jean shorts and a T shirt. The water wasn't bad after the first couple of minutes, and Bianca went in up to her waist. Caitlyn was happy running along the water line as far as she could before I caught her and turned her around so she could run back to where Bianca and Sandrea were. She did go in the water a bit and I had to follow her.

After half an hour in the water I decided it was too cold to stay longer. Both kids were good when it came to washing the sand off at the foot showers, and Sandrea and I changed them into warm clothes in the boot of the car. We drove around Plimmerton a bit to where the rocks are by the firestation, and Sandrea got out to take photos of the sunset.

I had brought food with for the kids, so they were eating supper in the back of the car. Sandrea and I ordered a pizza each from a pizza shop on the way home, and we waited for them in the car. As soon as we got home I popped Caitlyn into the bath and Bianca into the shower, which did a good job of heating them up. Sandrea decided she wanted to make pancakes for desert, and she found a pancake recipe in an old cook book we had brought over from South Africa. Bianca had to wait about 45 minutes after the pancakes were ready before she could have hers because she has to wait an hour after her nightly chemotherapy before eating again.

After Caitlyn was in bed I got Bianca settled in the kitchen watching Tom and Jerry on youtube, and started installing Kubuntu (an alternative to Windows) on the computer in the lounge. As you might guess if you know me my computer setup is non-standard, so I have a couple of minor issues to sort out before it becomes usable. But I found a nice Settlers of Catan game clone called Pioneers on the installation program that I played late into the night. So I was hoping Caitlyn would repeat yesterday's sleeping late today, but she didn't.

Househunting

So yesterday I left for Auckland.

A couple of years ago we lived in Auckland for a year before moving to Wellington, so in a way this move would be somewhat familiar, although at the time we didn't have to go to Starship so that will be totally new to us.

I fully expected to get lost. The roads from the airport to the other parts of Auckland are a bit complicated and not really that straightforward. So I was very surprised when I managed to find my way to the North Shore with absolutely no problems. I am staying with a friend in Mairangi Bay on the North Shore.

When we lived in Auckland we stayed in Milford which is also on the North Shore. As I drove past the place where we lived and through some of the streets and ended up at the Milford Shopping Centre, everything looked familiar and different at the same time. It was a very weird feeling and it brought back lots of memories of things we used to do with Bianca and places we used to go to. She was only 2 at the time. It reminded me how very much our lives have changed and how it will never be the same again. I do believe the change was for the better. For one we have slowed down, we are appreciating the little things more and as a family unit we grew stronger. So it's all good!

Today and the next few days I am houshunting for a rental home and I am crossing my fingers we find the perfect place! I miss my girls terribly, but I wouldn't be very productive if I had to look for houses and keep their routines in mind.

Monthly hospital visit

Today Terence, Bianca, Caitlyn and I featured on the front page of the Dominion Post. The article is all about our plan to move to Auckland. I really like the photo of all 4 of us. You can read the article here.

The day started out with Bianca and I going to the hospital for her monthly treatment. Until they know for sure that the shingles won't come back, Bianca is still isolated from other oncology kids and so we had to go to Ward 19. Bianca is also still off Dexamethasone as they suspect that it is the culprit with making the shingles come back each time. Bianca first received her IVIG transfusion. This usually takes around 2.5 hours to run through. Megan, the play specialist from Ward 19 came to visit Bianca and brought her some nice videos to watch. Kate, one of the volunteers at the Child Cancer Foundation also came to stay with Bianca a bit and I had the opportunity to get some lunch and just take a break. I don't know what I would've done without people such as the play specialists and volunteers and staff at CCF.

After the IVIG Bianca also received her Vincristine which is a 20 minute IV treatment.

Bianca had a go at listening to her heart...

Then just before we left the parking lot, I noticed a few really small spots on Bianca's legs, but they are not overly concerned and it definitely does not look like anything that might be a problem, so we'll keep an eye on it.

Other than the monthly medicines, Bianca is still on 50% dose Methotrexate and Mercaptopurine.

This afternoon Sandrea and I took the kids to the park and we fed the ducks, Bianca rode her bicycle and the kids just had a great time playing. We saw the cutest little puppies and a tiny chihuahua. Bianca was so excited to see the puppies.

Lessons learned

Now this is why I don't believe the whole deal with Christchurch is working very effectively...

Terence usually gives Bianca her oral chemo at night. We know that the Mercaptopurine = half a tablet and we know that the Methotrexate = 3 tablets. Okay. So far so good. We give the Methotrexate once a week and initially Bianca and I were going to go in today, but it was changed to tomorrow. When Terence gave the last Methotrexate to Bianca last week, he sort of assumed that I was going to ask for a script today, but didn't realise that I had no idea we finished the most recent prescription and he cleared out the empty containers. So tonight Terence realised with a shock that even though we still had some Methotrexate tablets left from the previous prescription before we had our delay, the dosage on those containers were different - hmmm...

So first Terence phoned Wellington Hospital, but they couldn't find where the Christchurch doctors were supposed to have updated our latest script information. I would imagine that they are responsible for this as they now do all scripts and fax it from Christchurch - hence our last frustration where the script only came through at 4pm and no response to any of the 4 messages left. Then when the nurse started asking Bianca's weight, I told Terence to ring Christchurch because I don't want any mistakes made with Bianca's dosages and this nurse wasn't involved with the last script at all.

Rang Christchurch and still no luck with getting the latest script information from the nurse who answered the phone and Terence ended up repeating what seemed like Bianca's medical history to this nurse. Thank goodness I then remembered that a week or so ago we got a copy of the letter that the Christchurch doctor sent to the Paediatrician who is pretty much in charge of us here in Wellington and this had the dosage on it. Thank goodness for this, but I can't help wondering why the Christchurch Doctor did not update our file when they are so strict about doing the actual scripts there now. You would have imagined they would have made sure it was updated on our files as well.

But anyway. Lessons learned. We will now not only record the number of tablets, but also the actual dosage. And I guess Terence pretty much realised I haven't yet perfected reading his mind... :-)

This morning on the way to the train station where we catch the train to work, I saw a beautiful rainbow. Just a pity that my photographic skills didn't do much justice to it. I'm hopeful that this will be a promise of good things to come...

What do you get when you mix a rubber duck and a cow?

On Saturday evening we all went to a Chinese restaurant. So of course we had to keep in mind the time that Bianca would need her chemotherapy (as she would have to stop eating 2 hours before that), there is also Caitlyn's sleep time to keep in mind and we knew that she would be tired sometime between 6:30pm and 7:00pm, and of course there are the crowds to keep in mind because we are trying to avoid large crowds with Bianca at the moment. So we arrived at the restaurant just a little before 5pm (which was the time they opened for supper). It turned out to be the perfect time because we were the only people in the restaurant and so were able to avoid the crowds. The kids didn't really eat Chinese food and we took some backup options for them.

It was also mothers' day this past weekend and I wish all mothers out there a happy mothers' day. For me the day sparked two emotions:

Excitement - it was awesome being able to spend it with my girls and my day started with breakfast in bed.

I also got flowers and some presents. Bianca game me a pair of paua shell earrings, that she chose and paid for with her own pocket money. Caitlyn gave me a bottle of Honey Mead Liqueur (which was chosen by Terence on her behalf). It looks very fancy and it says on the lable: "Through one thousand years mead has been traced from the time of Beowulf and the Court of King Arthur to that of Charles II. Whilst beer became the drink of the commoners, mead was the drink of Kings and the upper classes. Only those with stately importance and inherited good taste can truly appreciate the mastery of this sweet mead liqueur, made with manuka honey and spicy ginger." Okay, so perhaps I am not much of a king or someone with "stately importance and inherited good taste"...

It was pretty disgusting...

Now for the mystery question: What do you get when you mix a cow with a rubber duck? I don't know what you would call it, but we saw one at one of the local shops.

Mothers' day was a blessing and a very relaxing day for us. A blessing because we have two beautiful girls and a blessing because we had the opportunity to spend it together at home as a family.

The day also made me feel a bit sad and I thought of so many mothers who lost their children to cancer or another serious illness and who were not able to spend the day with their precious children, mothers of kids like Christian, Kimberley, Joel, Tyler, Mickey, Rob, Krista, Felicia, Isaac and so many others. It really makes me sad to think that this is the cruel reality for many people out there.

A new website

Recently I have been spending some time to put together a website. This is very similar to my Brave Fighters blog, but pretty much a revamped version I guess. So I feel quite proud of myself for putting it together. Okay fair enough I didn't actually have to put in any coding of any kind, but it was still great fun putting it together.

Please visit the site here and pass the website details on to others who might be interested or if you know of relevant links, please let me know.

Making silly people

Neutrophils are busy going up! They are currently sitting around 0.84. Bianca is still on only 50% dose of her oral chemo and I suspect she will still be for a little while longer.

Bianca and I have been doing some activites from The Correspondence School that her teacher Joan sent to her. Bianca really enjoyed the game where you have heads, bodies and feet and then you have to put them together correctly but you can also make silly people. She had lots of fun and kept asking to play it again and again.

Bianca also did the puzzle that was in the bag. The puzzle itself is perhaps a little bit easy for her, but I decided to spend the time to focus on building the outside border first and then to do the middle bits. Usually Bianca just jumps straight in and find pieces that would go together.

Tonight Terence and I also had to look at dates for when we will actually move and of course where things become tricky is that we need to coordinate it so that Bianca wouldn't need any hospital treatment until we are in Auckland again. Slowly but surely things are busy falling into place, but I must say this is much more complicated than any of the other moves we've had to do before, because at least then we had more freedom with days and it didn't depend on a medicine schedule.

Jo phoned today and we are due in on Tuesday and not Monday as Monday is a pretty busy day for them already and it doesn't matter if we did the Vincristine on the Monday or the Tuesday. So Tuesday will be a pretty busy day as we will get Vincristine and an IVIG transfusion so all in all will probably be busy for at least 3 - 4 hours once they get us started. So I'll just have to take some stuff to do.

A beautiful banner

A big thank you to Felicia from The Littlest Heroes Project. She designed a beautiful banner for us.

Felicia just recently started this organisation with Jason Caine (an uncle of Taylor Warren, another brave fighter). I've seen Jason's photos on Taylor's blog before and they are really nice.

This organisation offers photo sessions to brave fighters, survivors, their siblings and their parents. Unfortunately they don't yet have any photographers in our area.

Thank you so much Felicia, the banner is so beautiful!

Two finger pricks today

Today I came home earlier from work in preparation for a meeting with Make a Wish New Zealand. Basically the idea was for them to come and meet us, complete some forms and to discuss with Bianca her special wish. Unfortunately the one volunteer had flu symptoms this morning and this afternoon I received a call to postpone the meeting for when there are no signs of illness. So I spent the rest of the afternoon going through things I need to organise for my visit to Auckland. I have forgotten all the little bits and pieces that I need to keep in mind for a big move like this one.

This morning I phoned Jo to ask her about Bianca's neutrophil levels and basically they are sitting around 0.5 which is pretty much the cut-off. Anything lower and they have to put oral chemo on hold. She also discussed that we are due back in on Monday for monthly Vincristine and of course an IVIG transfusion. So I expect Monday to be a pretty busy day.

Later in the day Jo phoned again and suggested we go in for a blood test just to check whether the neutrophils are indeed busy coming up or down. A good thing to check now, because Monday is still a bit away. As I was at home already we quickly went in for a finger prick. I am hugely proud of Bianca because she ended up needing two finger pricks when the one finger didn't bleed very well and not a single tear in sight! I am so impressed.

Received some great news from CCF and that is that the Christchurch oncologists will now come through weekly. Great news! It is really good that we now have a management representative who will now meet monthly with parents and she is really committed to listening to the parents and working on the communication problems. It is nice that they are working towards an effective solution.

And other than that just crossing all my fingers and toes that Bianca's party will happen. Oh she will be so surprised the day we tell her...

Back into our routine

So far so good. We are still at home and enjoying every minute. We are pretty much back into our medicine routine and at the moment it looks like this:

• Acyclovir: 1 tablet, 4 times a day every day
• Co-trimoxazole: 6.25 ml twice a day on Tuesdays, Wednesdays and Thursdays
• Mercaptopurine: Half a tablet every night for 6 nights and 1 tablet for night 7 (chemo)
• Methotrexate: 3 tablets every Monday evening (chemo)

Thank goodness Bianca is able to swallow tablets. She is battling a bit with the Acyclovir because it is much bigger than the chemo tablets.

Last night was the very first night Bianca actually didn't make a wee in the night. Bianca is fully daytime toilet trained, but we were about to start the night time training when Bianca was diagnosed and then decided to just wait and not put the added pressure on. The reason for this is that if Bianca had to make an accident, it means we have to double-wash the sheets / clothes and it would have to be washed separately from other clothes and that was the last thing I had energy for, so we have just waited. Now I am hopeful that last night was a promising start and that she is finally ready for that night-time training.

Then in a few weeks we will have a really small birthday party for Bianca with a few of her closest friends. Of course as with everything things can change very quickly and we won't know if it will happen until it happens. Of course we wish we could invite many more children, but "more children = bigger risk" - story of our lives... We haven't told Bianca that we are planning this because she will just be so disappointed if for some reason it couldn't happen. So I'm crossing all my fingers and my toes that we are able to let Bianca have this one special moment.

I am still working until next week Wednesday and then I will visit Auckland, find a rental home and then we have to start packing. A whole new chapter in our lives...

Big change happening soon!

Friday was a busy day! In the morning I attended a morning tea at CCF. The business manager of Wellington Hospital visited and parents had the opportunity to discuss their concerns and ask questions about the current care that we are getting at Wellington Hospital. At least a positive start even though it won't change the current care arrangement until October.

Then I had to rush home to get Bianca so we could make our appointment at the hospital. It was only because of a special request on our behalf that we were able to have an appointment with the oncologist from Christchurch, otherwise we would not have seen the oncologist. The doctor pretty much agreed that we have a "Bianca protocol" because her situation is kind of unique and doesn't fit the standard protocol. The doctor from Christchurch asked me whether Bianca's face was worse when he last saw her when she was in hospital a couple of weeks before, he asked me how long she's been on maintenance, stuff that I felt he should have known, so it almost felt as if he wasn't clued up on her notes. We don't know this doctor very well, but I understand he is pretty good. Of course it doesn't help that he only comes up every so often and is already pretty busy with his own work load, so it's pretty hard on these doctors as well.

I really miss Doctor Anne. I'll never forget the one day a long while after diagnosis, one of the nurses was weighing Bianca and I said "I wonder what Bianca's weight was when she was first admitted" and at that moment Doctor Anne walked past and she heard my comment and then said "she was (whatever it was)". Wow, I couldn't believe it and she didn't even have Bianca's notes with her at the time. Now there was a good doctor for you!

But anyway, big news on our side is that we will be moving soon. Terence will be working in Auckland and so we will be moving and Bianca will be going to Starship Hospital. So on the 15th of May I will fly to Auckland and stay a couple of days and amongst other things view some rental properties. The plan is that we will move around mid-June. Our journey taught us that things can change very suddenly, that you just don't know what will wait around the next corner, and that you have to make sudden changes when you need to. So it is all good and positive in the end!