A long day at the hospital today

So today was the day we knew were coming.

We went in to the hospital at 09:00 this morning. On the way there Bianca said "we must remember to get some beads because I will get my wiggle put in". In Wellington they give beads as and when things happen so that makes it easy to associate the treatment with the bead. I was worried that we might get stuck in traffic as it was raining and was quite windy (certainly an example of why Wellington is known as the Windy City), but traffic was not too bad. Actually I do not mind the weather so much, it certainly means that the garden would get some much needed water.

We got bloods taken (they decided to take enough blood for a cross match in case we need a transfusion to save some time), then waited for the results.

It came back and Platelets sitting at 40, Haemoglobin sitting at 75 and Neutrophils sitting at around 0.62 or somewhere there (pretty low at the moment). So we got a blood transfusion. I hate this one because it takes 4 hours from when the blood arrives and that feels like the longest wait ever. You sit there and watch it go "drip ... drip ... drip" into the little cannister where the IV line is attached.

We eventually left the hospital just after 17:00 and I must say that Bianca really looked much different and you don't always realise just how pale they are until they have a bit of colour back in their cheeks.

If you ever wonder what 4 hours look like:

Here Bianca is eating lunch and watching a DVD while getting her transfusion:

While we waited Bianca also drew a poster for Jo, the day stay nurse. She drew some "bugs" and then wrote "Wash your hands".

We have to be back at the hospital on Thursday morning for another blood test.

Medicines today:

• Fluconozole - 10 ml at night

A change to our blog

There are so many online stories that I have discovered through my various searches on the internet and through the various blogs that are out there. When you first get the diagnosis you feel so incredibly alone.

I remember with us that before Bianca got sick I did not even personally know a single other person who had leukemia. I did not know that there were different types of leukemia and cancers like neuroblastoma was completely foreign to me.

Then you start reading some of the other blogs and journals out there and you discover their stories as well as others who leave the links to their sites in the comments or guest book sections of these blogs.

So I have now put all these links that I found (where people posted the links to their own sites in the comments or guest book of the various blogs and journals) in a site where I am able to put more detail such as the definitions of some of these illnesses and sort it by illness. I find it comforting knowing that I am not walking alone, although I am sad for each and every one of these people who are fighting their challenging battles each and every day. They are all a huge inspiration to us every single day!

You will find the link on the right hand side towards the bottom. Please also keep these people in your prayers and thoughts!

A fun weekend despite low levels

This weekend we were lucky that the weather was pretty good. During the week it was quite windy, so not ideal outside weather. Yesterday the weather was wonderful, but today it was overcast again.

So yesterday we made the most of the weather and decided to go and do something fun outdoors. We can't really go anywhere where there are lots of people or to some of the busy indoors places such as shopping centres. Bianca's levels are quite low at the moment, so we have to minimise the risks.

We decided to go to Staglands which is a great place with lots of different animals and birds that you can feed. On the way there we went to The Blueberry Farm where you can pick your own blueberries. Bianca fell asleep on the way there and so we woke her up and at first she wasn't too happy. But then she soon got into it. It was a little bit of a walk to where you can pick the blueberries. And Bianca and I each had a bucket to put all our berries in which you then take back for them to weigh. Then back in the car Bianca even tried a berry and decided that she wasn't too fond of it.

Then we went to Staglands. Another tranquil place that is quiet and peaceful. Bianca liked feeding the bunnies and we even saw a little fawn. He was gorgeous. Bianca also had great fun feeding the ducks and throwing an apple to one of the pigs. I think Bianca really enjoyed it. Of course our constant companion has become antibacterial alcohol gel which we used on Bianca and our hands so much to make sure that she wouldn't pick up any bugs.

Today was overcast so not great to go anywhere outdoors. And with Bianca's low counts we can't take her to the shops or indoor play areas and the indoor swimming pools are a big big NO! So we just spent the day at home. At one point Bianca and Sanna watched "Fly Away Home" and there was one bit where the Dad went to a meeting and Bianca wanted to know if the little girl went along as well and Sanna said "no, the little girl didn't" and Bianca then asked "is it because her neutrophils were too low?"

Tomorrow morning Bianca and I need to go to the hospital for a blood test and possibly a transfusion or two. She looks pretty pale and has some bruises, so I will prepare for a long day. Bianca told her dad "I'll take my toothbrush just in case I need to sleep at the hospital".

In a way it feels really comforting knowing that Bianca understands a bit about her illness. She certainly doesn't ever get cross if we said that she couldn't go somewhere because of her low levels. But sometimes I do feel a glimpse of sadness that she is only 4 and has to deal with the harsh realities of being sick. But then I look at her and how she just takes it all in her stride, how she keeps finding the fun in everyday. We are really so blessed with all the lessons she teaches us every single day.

So we savour every moment, and we laugh and we find things to be silly about. And one day I don't want Bianca to regret a single moment of this journey, but I want her to look back and feel proud of what she was able to achieve every single day.

Medicines today:

• Fluconozole - 10 ml at night

Meeting at the hospital

Thank you to Bridgit Pirie for sharing a website with us. www.startafanclub.co.nz - it is a great site where you can say thank you to blood donors. You can read her brave little boy Peter's story by clicking on the the link on the right towards the bottom.

Had a blood test this afternoon and we did not need any transfusions although Bianca's counts are still low. So we are still just waiting for counts to come up so we can start maintenance. Need to be back on Monday morning to check counts and then possibly transfusion if the counts are still going down.

Had a meeting with Doctor Sullivan and I arrived armed with a list of questions. I was happy to hear that all Bianca's treatment (all of it can be done as outpatient) will be done in Wellington. Thank goodness. Was not in the mood to travel again. For normal admissions such as infections, she will be admitted at Wellington as far as I understand. I do feel more positive after the meeting.

Once on maintenance, all Bianca's home medicines (apart from the co-trimoxazole and fluconozole) will be given in pill form. It sounds as if initially we will go in once a fortnight. We will all have to go for the flu vaccine to prevent us all getting flu. I'm not looking forward to this as I have a bit of a fear of needles (fancy that huh!), wonder if I can claim a bravery bead... :-). But it will be for the best, it is best to try and avoid as many illnesses as possible.

We also discussed school. It is hard getting our head around it now, but once Bianca has been on maintenance for a few months we will know how she tolerates it all, if her neutrophils will stay level and so on. They will adjust her chemo dosages as needed to try and keep them sitting at 1.5. So if all goes well she will start school in June when she turns 5 otherwise we will wait until next year. Bianca is so ready, but I just don't want her to take off too much time from school because I won't want Bianca to miss out on making friends.

Just heard the nicest quote on a movie that I am watching: "why do you try so hard to fit in when you were born to stand out?"

Medicines today:

• Fluconozole - 10 ml at night

Waiting for counts to come up

Thank you very much Jared and Caroline Slight for your donation to the Funrazor initiative. I really appreciate it. I must admit it was great fun and I will definitely be participating again this year. Thank you so very much for all the donations that were made to this important cause.

This morning Bianca and I went to the hospital and they took a blood sample. We had to wait until the results came back. We went to the hospital cafeteria and pretty much just waited for a bit. Then we went back and they told us that we didn't need any transfusions today. Bianca's platelets are still low, but since she doesn't have any major treatments coming up, they decided to check the levels again tomorrow. Her haemoglobin came up a bit and that is good. Her neutrophils are quite low and she is neutropenic at the moment so we are avoiding crowded places. We have to be back again tomorrow afternoon to meet up with Doctor Sullivan. Maintenance will start when her counts are high enough.

Medicines today:

• Fluconozole - 10 ml at night
• Co-trimoxazole - 6.25 ml twice a day

Some information on our blog

I've had a couple of people saying they don't know how to leave a comment. Basically if you click on "comments" at the bottom of each post it will take you to a screen with an empty block on the right hand side. You will then be able to type your message. If you are not registered as a blogger, then you can select "anonymous" (remember to put your name in your comment). You will be expected to type some letters and you have to type it the way they appear. This is just so that the computer knows you are a real person and it is not some automatic spam situation. And then it will appear immediately once you post your comment.

Of course you don't have to leave a comment, but we do enjoy reading your comments. And it does let us know that we have your support and that we are not alone.

If you leave a comment and you have your own blog or journal and you don't mind sharing the address, then we would love it if you could put this in your comment. I really enjoy following all the different stories.

You will also note that I put some new links on the right hand side - all about blood and bone marrow donor information. Bianca has had 23 blood product transfusions in the past 6 months (red blood cells and platelets). If you are interested in becoming a donor, then please find out about it and maybe just maybe you might help Bianca and definitely other people like Bianca.

I have also moved all the newspaper links and you are now able to click on a single link (see title "In the news") and it will take you to where I keep record of all relevant newspaper articles that I find and have found.

Do keep well and thank you so much for all the support! We really appreciate it and without your support, this battle would have been so very hard!

A wonderful "nothing" day

This week is feeling pretty confusing. With all the holiday days it doesn't really feel like a Wednesday today and I have to keep reminding myself that tomorrow is Thursday and we will have to go to the hospital for a blood test and possibly a transfusion or two. And I guess it felt a bit funny in a way, in one way everything slows down and becomes more relaxed because it is holiday, but in another life carries on as usual with us, you can't take a break from the medicines every day, you can't really take a break from being observant to see if there are any worrying signs, and of course having a baby means rountine has to carry on as usual - babies don't really like taking holidays either :-) so in one way your body wants to take a break, but in another your mind keeps pushing on ahead. It did feel good to have Terence home for a few days. He is due back at work again tomorrow morning.

Today was another nothing day. The morning was pretty quiet. And then this afternoon we went to visit our good friends Carl and Lisa and their two beautiful daughters. We met them at Bianca's daycare centre at one of their social evenings. Of course I find it quite funny how close our names are "Lea" and "Lisa", "Bianca" and "Brianna" and "Caitlyn" and "Caitlin" (our Caitlyn is 10 months old and their Caitlin is 14 months old). So it was good to see them and we had a BBQ and the kids had lots of fun playing. Of course the two babies didn't really know much about sharing and they kept trying to drink from the other one's cup. Same type of cup, but Caitlin's one is yellow and Caitlyn's one is blue. I mean really can't they just get their colours right? :-) :-). So a couple of times Caitlyn would grab the yellow cup and start drinking and then would get most upset when I take it away and offer the blue one.

Then there was one funny moment which probably would have made a nice moment for America's Funniest Home Videos. Lisa put up a little wooden gate (one of those baby gates) to prevent the babies going through the door. The cat came in and was on the other side of the gate. Caitlyn was sitting on our side of the gate. Bianca was on the cat's side. Bianca is a bit scared of cats and so she freaked out and screamed really loud which then made the cat jump and run (the nearest exit being towards us and away from Bianca), so the cat ran through the gaps in the gate, the gate came loose and was still around the cat's body and it jumped over Caitlyn and of course she screamed because who wouldn't if you suddenly saw a black streak jumping towards you with a big square wooden contraption around it. The cat then managed to free itself from the gate. So there we were with a screaming baby, a bewildered Bianca and the cat hiding behind the TV. Quite traumatic for the kids and the cat, but actually quite funny.

So now tomorrow it is back to work for Terence and Sanna and Bianca and I will set off to hospital early in the morning for a finger prick. I will probably put some Emla cream on her port just in case and then they will probably make us wait for the results. There is a chance that she will possibly need at least a Platelet transfusion, so I'm expecting it to be (but hoping not) a long day for us. And then on Friday we will be back at the hospital to meet the Oncologist who is in Wellington from Christchurch (we don't currently have any Oncologists permanently based in Wellington - a bit of a scary thought in the event of an unplanned visit to hospital). Not too sure at which point we will start maintenance, but I guess it will all depend on counts and stuff. In the meantime it felt good not to have to give the oral chemo at the moment. Usually with the oral chemo we have to wait 2 hours after supper and that does make it hard to plan meals and stuff like that and then for Bianca to go to bed at a reasonable time.

At some point in time Terence and I will be sitting down and discussing the road forward. There is so much uncertainty for us around the whole Wellington situation. At least for me at the moment. This year when Bianca turns 5 in June she is supposed to start school. School will be one of the few things in her life (at least until the end of treatment) that will be stability and I guess in some respects security and comfort. Two years is a very very long time and right now I'm afraid that everything won't work out fine at the Wellington Paediatric Oncology unit. Of course I'm desperately hoping and praying that they will prove me wrong. And they are saying that they are working on it, but it just doesn't always feel as if we are included in the whole picture. Perhaps with everything that has happened I do have a bit of a trust issue and perhaps I'm just at the stage of treatment where I won't just accept what they tell us, I find I am questioning more. So I really do hope they prove me wrong. My worry is that we just start school, Bianca gets used to it and then things don't work out or she misses too much school because they end up expecting us to travel to Christchurch for whatever reason. Right now I really need to decide what would be best for Bianca - emotionally and regarding her healthcare. Of course with the deal between Christchurch and Wellington now agreed, it is expected there will be teething problems, but it is my child's health and emotional well-being that is involved and I find myself fiercely protecting, almost like a tiger "fighting" for her cubs.

To those of you not familiar with the situation at Wellington Hospital, please feel free to refer to the link on the right hand side titled "in the news". If you click on the link it will take you to relevant news articles.

Medicines today:

• Fluconozole - 10 ml at night
• Co-trimoxazole - 6.25 ml twice a day

The first day of a new year

We didn't do much today. Just pretty much relaxed at home. I could think of a million things that needed to be done, but decided to just take it easy today. We decided to put up the inflatable swimming pool that Terence's sister gave us a few years ago. It was a nice sunny day today and so Terence got it all blown up with an air pump and then Bianca helped to carry it outside. Then it was Bianca's special job to put some water in it. We only put a little bit of water inside so that it would not be too deep for Caitlyn. And then the girls had some fun. Caitlyn was really excited, but soon the excitement became a bit much and she decided she had enough.

Bianca has quite a few bruises on her legs and arms and I suspect we will be getting at least Platelets on Thursday. Not really in the mood, but it has to be done. With any luck her counts would have gone up, but it doesn't look very likely at this stage. So we will just see.

Tonight it felt almost strange not having to give the oral chemo. It was our last dose for this phase last night and now we are waiting for them to give us the go-ahead for Maintenance. So no limitations, no waiting 2 hours after supper. Of course we still had some other medicines to give, but we just give those with her food.

Speaking of food, thought I'd share this photo of Caitlyn with you that we took just after her lunch. Anybody for a full body hug? :-).

Here are some photos from the beach the other day:

Medicines today:

• Fluconozole - 10 ml at night
• Co-trimoxazole - 6.25 ml twice a day