Admitted to hospital

And as things go, plans changed. Last night Bianca started crying when she ate her supper and we discovered a cold sore on her tongue. We phoned the ward and we were told to bring her in on Monday (today). So this morning Sanna, Bianca, Caitlyn and I went to Wellington Children's hospital - Ward 19 Isolation (because of the shingles). Got there and waited for a bit and then we saw the doctor. He thought Bianca looked a bit better and we discussed being off chemo and why her liver is not working 100% at the moment and so on. They wrote a script for a mouth rinse that would numb Bianca's mouth and so would make it easier to eat. And they let us go with a firm reminder that she is still neutropenic. And then wait, wait, wait at the pharmacy.

So Sanna dropped me off at work and I managed to get a couple of hours in before Terence asked that I call him "we need to take Bianca back to hospital, they reviewed her case and decided she would have to be admitted for at least 5 days for IV meds". Okay, so then we left in a hurry, got home and had to pack.

Because it is isolation, they don't like to share toys from the ward due to risk of exposure to other children, so that means we have to pack enough things for Bianca to be entertained for the 5 days and of course enough clothes, and so on. If somebody walked into our house, they would have thought we were packing for holiday - if only...

But Bianca was pretty excited at the prospect of staying at hospital. She even put the skin numbing cream and dressing on herself and it is a bit sad that at 4 years old she is so familiar with these things, but in another way, it does feel comforting that she feels so comfortable at the hospital. It would have made it so much harder if she was scared of going or hated being there. We put Emla cream on the spot where they will be accessing her port sitting just underneath the skin. This is like having a permanent spot for drawing blood, attaching an IV line and so on. The cream takes about an hour to work and then it isn't sore when they put the needle in.

So here is Bianca and Terence's "home" for at least the next 5 days - Ward 19, Isolation room 5!

Bianca got a lesson in taking a pulse, here she is trying to listen if she can hear anything:

No, nothing! So time for the next part of the lesson:

And of course we don't go without our courage beads! We participate in the Beads of Courage programme and basically kids get a bead for every procedure, stay in hospital, port access, finger pricks, injections, special recognition, day of chemo and so on. If you ask Bianca why she gets all her beads, she will say "because I am so very brave".

Our amazing 4 year old, she is indeed very brave!

So not just bruises...

So you think bruises are just bruises? I certainly thought so before. But now I know that a bruise could be because of a bump, or because of low platelets, recently with Bianca's shingles I also learned that a bacterial infection could present itself looking like bruises and now also know that when your liver doesn't work 100% it could also look like a bunch of bruises. Still confusing though, because to me they still look just like bruises.

So during Bianca's brief stay in hospital she didn't need platelets at all. She is still neutropenic which basically means that Bianca's body doesn't have the ability to fight infections very well and so she is at high risk of picking up even the slightest cold. So right now we need to avoid other people. I'm a bit disappointed with that, because it is not fun being stuck at home.

Bianca's liver doesn't work 100% at the moment. We thought perhaps she looked a little bit pale, but of course at the hospital under the bright white lights she apparently looked a bit yellow. The doctor indicated this is because she is not over her shingles as yet and it is still lurking in her system. So verdict: "off chemo for the next 2 weeks and back on aciclovir". Because apparently shingles and chemotherapy don't mix very well and can affect the liver. Never a dull moment...

Bianca really enjoyed the stay. She was extremely brave with her finger prick. But then they also had to draw blood from her hand and before the time prepared several spots on her hands and arms in case they had difficulty with one spot. For this they put the skin numbing cream on with a dressing and then when it was ready was able to draw blood. By that time Bianca was asleep and so she wasn't even aware of them drawing blood from her hand. But this morning she screamed like crazy when Terence had to try and remove the dressing from her hands and arms.

Bianca was discharged early this afternoon and Terence had to drop Bianca off here before getting the medicines from the pharmacy because going to the shopping center is a big no-no for Bianca at the moment. Until the liver function is back to normal, no paracetamol because apparently it is not very good for person's liver. And no chemo for the next two weeks.

We are due back in on Wednesday for a checkup.

Bruises, bruises, bruises

Bruises, bruises, bruises. Today I counted around 18 or 19 bruises on Bianca's legs and arms. Bianca is due in on Monday to check her blood levels to see if they have gone up sufficiently to start chemo again. So we decided to call the hospital to check if it would be better to check it out tonight rather than wait until Monday, just in case Bianca suddenly needs platelets. So they left around 19:30 tonight.

Terence then phoned and said that the test came back a bit too low and she will need a further blood test, but they cannot take it from her port it had to be taken from her hand and arm as I understand (not sure what they call this test), so they will stay the night and then we'll see when the results come back.

As far as I know Bianca is still neutropenic meaning her neutrophils are still too low and we should still avoid other people as she is at high risk of picking something up. Until they pick up sufficiently she will be off chemo, and whilst the thought of being off chemo does feel a bit scary (because treatment feels "safe"), we are taking advantage of not having to worry about what time Bianca eats and so on, so we are just taking it pretty easy in that respect.

Not so straightforward

Today felt pretty difficult and challenging.

Bianca felt a bit tired, but overall was quite happy. I guess from my side I didn't really expect her to become neutropenic again now that she has reached maintenance even though I know that with her medicines it is still very much a possibility. But I guess in a way it is your heart wanting one thing and your mind telling you another. So it was just another harsh reminder that this road is unexpected and isolated. So now we are back to isolating Bianca at home and that means possibly no ballet on Monday, no play dates, no going along to the shops and certainly if she was at school already that would have meant taking time off school. It is a pity though because with our current weather we do try and maximise Bianca's chances of being out and about, soon it will be winter where we will have to be extra extra careful as so many people usually get sick during winter.

Today I also felt a bit as if I was pushed with my back against a brick wall and my mind racing trying to find a "way out" and then realising that I am stuck. Days like today make me wish things were just a little bit simpler, a little bit easier and perhaps not so complicated.

Let's just say that because of specific actions we have not been able to secure an au pair for when Sanna leaves and that because of this I now might very possibly lose my job if I am unable to come up with other child care options.

Unexpected blood test results

Monday morning Bianca woke up pretty grumpy. And I thought "oh dear, here we go..." so we sat on the couch together for a bit until she felt happier.

Caitlyn's favourite past time, pressing buttons...

And the other favourite past time, eating. Anybody for a full body hug?

Later in the day Bianca saw Stella outside and she and Stella had lots of fun. It felt so good seeing Bianca so happy, having fun. Yesterday Terence took the girls to Staglands and he invited Stella and her mom Jenny to come along too. The girls really enjoyed it and they fed bunnies and ducks (and a beautiful swan) and had a pony ride. It is pretty cool that they live right next door.

Caitlyn had some fun as well:

The two girls loved feeding the ducks and swan:

And who can resist a cute bunny?

The highlight of the day:

Tonight Terence took Bianca to the hospital for a blood test. She has a number of bruises on her legs and arms and we just wanted to check it out. Of course Bianca just absolutely loves visiting the hospital and we really like the staff there. They are absolutely great with Bianca. I don't think I would have coped if she hated going.

So they waited a little bit and then came home with an instruction to keep an eye on the bruises and that they would phone us with the results. Pretty much as soon as they came the phone rang:

• Haemoglobin - 97
• Platelets - 57
• Neutrophils - 0.41

Oh dear - she is neutropenic! So now we'll have to wait and see what they say tomorrow morning whether they want to see her again, another blood test, stop chemo or whatever. I suspect at the very least they will lower her dose or even stop her chemo alltogether for a little bit to try and get those neutrophils up again. But that's one of the main side-effects of the chemo Bianca gets every single night. It does tend to lower neutrophils and that is why they often have to adjust the dosage.

So isolation at home yet again. I'm not sure how long she's been neutropenic because last time we checked she was sitting at 1.6, so of course we haven't been isolating her and right now we are just hoping she wasn't exposed to something horrible. So for the time being she'll have to stay away from other people.

What a weekend!

We had a wonderful weekend!

On Friday morning Bianca had a play date with her friend Amy. We met up with Bonnie, David, Amy and her two brothers at Aotea Lagoon. The kids fed the ducks, ate some picnic food and played. Bianca and Amy just had the best time ever, it really made Bianca's day seeing her friend again after such a long time.

On Saturday morning Bianca and her dad went to the Porirua New World which is where we pretty much always shop. We like this shop because their hours are convenient and the service is great! There is a lady there (sorry I don't have her name) and whenever she sees us she always asks how we are doing. So she gave the girls each an Easter egg as a present. Wow, thank you so much! That was totally unexpected and very much appreciated!

Later in the day I had to go to the shops by myself as I had to give the Easter Bunny a hand with getting some Easter eggs for the kids. Let me tell you, there is nothing like last minute and if it wasn't for the last minute nothing would ever get done! The shops were so so busy and I really struggled to find parking. In a way it was a good thing to go because K-Mart had 20% off all their Easter eggs so I was able to buy a whole lot at much cheaper.

Last night Terence went to the Rock2Wgtn concert here in Wellington and there were performances by Kiss, Alice Cooper and Lordi. Not really my taste, so Terence went with somebody from his work. Thank you very very much to the performers, promoters and The Child Cancer Foundation who made it possible for us to have the tickets. Terence had the best time ever and he thoroughly enjoyed it!

This morning at around 6am I ran around the back yard to help the Easter Bunny hide some Easter eggs. After Bianca woke up the Easter Bunny rang the doorbell. Well, it must have been him because he left a note and a bag to collect eggs. So Bianca then got the important job of hunting for eggs. Well, I never saw her dress herself so quick and her whole face just lit up. She had a great time. We made sure she had her breakfast first and kept some chocolate eggs for tomorrow. Of course this was pretty much the first time Caitlyn had chocolate and later in the day I found her in the dining room area where she grabbed a chocolate egg from the table and ate most of that egg. The little rascal! She just grinned.

This afternoon Terence and Bianca went to the beach and they had so much fun digging in the sand, running into the water and exploring the rock pools. They even saw some live creatures in some of the rock pools.

Tonight I created two new groups on Facebook. The one is called Brave kids fighting cancer. This is pretty much for anybody to join regardless of where they stay. The other is called Kids with cancer in New Zealand and this one is specifically aimed at people who belong to the New Zealand network on Facebook. So I'll see if these two groups take off. I hope so, because it might be nice to have a forum where people can ask questions on how other people dealt with specific situations and to share photos and links. And of course if there are specific events or initiatives, this will be a great way to share with others.

Thank you for good moods!

I am so so glad that we are done with the steroids for this month. Bianca was in such a good mood today. None of the other chemo and regular medicines affect Bianca too much mood-wise (of course with each one there are some side-effects to keep in mind), but the steroids... well that's a different story all-together. So I am really pleased it is only 5 days each month.

This morning Bianca drew a picture and then took her one book titled "I love you all the time" and the then looked at the words and wrote on her sheet of paper "I love you all the time". She loves writing and she is pretty good at forming her letters.

Bianca is so excited because tomorrow she gets to play with one of her best friends, Amy. She hasn't seen Amy since the last visit to Polyhigh (the daycare center Bianca used to go to). Bianca keeps talking about Amy and writing Amy's name and I think she's really missing her friend. But tomorrow we will meet Amy and her family at Aotea Lagoon where they will play and feed the ducks. I haven't yet decided if we will take Caitlyn along or not. I guess we will see if she is tired or not when it is time to leave. Amy might also be doing ballet next term and that would just be so exciting for Bianca to be able to do ballet with her friend.

Today was Sanna's birthday (Happy Birthday Sanna). She is on leave at the moment so we ended up just giving her some money so she could do something special on her trip. Sanna, we're waiting for those photos! The kids do miss their "like big sister" a lot and when I asked Bianca who will be coming to visit (meaning the Easter Bunny), she asked "Is it Sanna?"

Yesterday I made a new friend on Facebook. It was pretty much a coincidence, but it turned out that this lady lives really close to us and she has been following our blog. So that is pretty cool. She volunteered to let Bianca spend some time with their one dog and that would be so exciting for Bianca. Bianca just loves animals.

Speaking of animals - Bianca has been asking for a kitten. In fact she drew me a picture of the kitten she would love to have. She already told me that she would be very very gentle with the kitten and not like George on The Go Show (George is a short cartoon story on The Go Show where he does something and then they discuss the things he did and discuss if there are better ways to handle something). Unfortunately Bianca is not allowed a kitten at the moment. Our rental agreement does not allow us to have a kitten and kids with leukemia are not allowed kittens either (I did try my luck before trying to get a cat because we had mice and Doctor Anne very definitely said no). So, we'll just have to wait until the right time.

I feel quite sad that yet another child passed away because of cancer. Little Kimberley Fayette passed away yesterday. She was diagnosed with AML (a form of leukemia) in March 2005 at the age of 6.5 months. My heart really goes out to her family and I pray that they will find comfort during this very difficult time. I find so many different blogs and journals and even though I will probably never meet most of them, you do get to know them quite well. So it really breaks my heart when I read updates like these, knowing how very long and hard this journey must have been for them.

Last day of steroids for this month...

Last day of steroids for this month. Until next month...

Today was a better day and Bianca was much happier, although a bit more clingy. Bianca was also more obsessed with food today.

Bianca is totally hooked. Her favourite shows at the moment are Speedy Gonzales and then Donald Duck in a cartoon with chipmunks called "Three for Breakfast" and she kept asking to watch it over and over again and each time she would just giggle away. It is so funny!

I'm staying at home this week as Sanna is on leave and Terence needs to be at work and it is great spending some extra time with the girls. Although they do keep me really really busy.

Bianca is getting so excited about the Easter Bunny coming for a visit soon. We'll have to get her to find some easter eggs for her baby sister.

On the 8th of April we have a meeting with the school to discuss Bianca's specific needs. I'm so glad things are moving along. After this meeting we will start setting up visits to the pre-school for Bianca. This is in preparation for when Bianca starting pre-school beginning May. And then in the third term Bianca will start junior school. So soon we will go shopping for uniform. For Bianca the most exciting part will be choosing a lunch box.

And then in the meantime I am anxiously waiting for some more applications for a new au pair. Sanna will be leaving end of April and we will miss her just so much. She very much became part of our family.