Friday, 17 August 2007

Today was a difficult day for us. The past few days we have been trying to get Bianca to eat more, she does not really have an appetite and is busy losing weight. Right now she needs all the calories she can get. So it is quite strange when the doctors suggest to put cream in her cereal and put butter (not margerine) on her bread and so on.

This morning they told us that there is a big likelihood that she has CMV. Usually lots of people have had some exposure to this in their life, but in her case, she doesn't really have much immunity so it is quite serious for her. So today they inserted a feeding tube through her nose as it will now be really important that she gets enough calories. She knew it might happen because we spoke about it and I warned her. So this morning when we told her it is going to happen she said "I will eat". She was a bit upset when we told her she was going to get it anyway. I started crying. I tried so hard to avoid getting the stupid nose tube and it had to happen anyway. I could not go with, so Terence went along with Bianca. She was pretty upset and it took a while for her to get used to the nose tube. Thank goodness Terence was there, I would not have been able to do this on my own.

Later in the day she also had to go into theatre for a broncioscopy to check why she is still coughing and if this is in line with the suspected CMV. At least they now have a better idea of what might be wrong and this will help them to treat it more effectively.

It does mean though, that we will not be going home any time soon and she will remain in isolation. She will continue with the oxygen and there is a slight chance she may have to be transferred to the ICU in Auckland (they are better equipped than here in Wellington).

Tuesday, 14 August 2007

We have now been in hospital more than 3 weeks. The past few days Bianca had to have extra oxygen - this is because of the viral infection she has. They put a tube in her nose (but it does not actually go in very far, it sits just inside the nostrils, providing extra oxygen, so it is not sore or uncomfortable or anything like that). Today she was taken off the extra oxygen so it looks promising that we might go home soon.

Here Bianca is helping Nurse Sue.


Caitlyn also went to daycare yesterday and this morning. Caitlyn has now started with solids and she really enjoys it. She seems to enjoy whatever we offer so it is quite exciting. Bianca just loves being involved with her baby sister. It is so good that we are able to let Bianca still have access to all of us. It gives a bit of a sense of normality.

Yesterday Bianca told me she wanted to plan a puppet show for Daddy and Caitlyn so today we made a list of everything we need to do. I wrote it down and Bianca shared ideas. We decided that we needed to choose a story, make tickets for Daddy and Caitlyn, a poster to advertise our puppet show, making puppets and so on. Bianca decided that we will do The Little Gingerbread Man. Bianca made a ticket for Daddy and Caitlyn and she decorated it and wrote their names on it (she wanted me to write down the letters on a separate page which she then looked at and wrote on her tickets). She also made a poster and drew a picture of Caitlyn and Daddy and then four windows. She then chose the numbers 1,2, 3, 4 from her craft stuff and stuck a number in each of the windows. For the puppets I drew outlines (as best as I could - drawing is not really my strong point) and she then cut it out and decorated some of it. We then stuck ice cream sticks on the back for us to hold. So we are pretty much set to go and we will do this in the next day or so.

Friday, 10 August 2007

We are still in hospital. Yesterday we thought we might go home today, but this morning her cough sounded worse than yesterday and she needed another X-Ray. So not too sure when we will be going home, but hopefully this weekend still.

A few days ago, Bianca had a mystery rash. The doctors were not sure what caused it whether it was just her body realising it had a viral infection or whether it was a reaction to some of the antibiotics, but it disappeared so we are still not sure. She sure is keeping the doctors on their toes.

Today there was a clown named Jelly at the hospital and he made Bianca a kitten balloon. She was very excited. Of course everybody had to wear masks because they are not sure what type of viral infection Bianca has and so has to treat it as infectious.

Tuesday, 7 August 2007

This morning I had a morning tea with the Child Cancer Foundation. They have this once a month and then a bunch of the parents get together to catch up and just have a chat or whatever. For those of you who don't know what a morning tea is, it is a phrase they use here to describe a get-together mid-morning where you would have tea or coffee with some muffins or biscuits or another type of snack. It was great to catch up with some of the now familiar faces that I have seen at the hospital. Of course some parents are completely done or very nearly done so it is also good to find out how they coped.

Terence took the morning off and looked after the kids. Of course when I came back I had to take over again and look after the kids and then my whole day felt upside down. I felt completely out of my routine. So it ended up being quite an exhausted day for me.

I met Bonnie, Chelsea's mom. Chelsea is a little bit younger than Bianca and was diagnosed with ALL in the same week as us. Currently we are approximately a week ahead of them. Both kids are in hospital at the moment so we see each other several times a day at the ward. Both kids are in isolation so they can't even have hospital play dates.

Sean is in the room across from us. He has been in hospital for so long. He recently had a bone marrow transplant and they are currently praying and waiting that the transplant will end up being a success. So I see Catherine from time to time as well and then we "catch up".

Here is a photo of the CT Scanner that was used when Bianca recently needed a CT Scan - we could not take a photo then, but Terence snapped one when the door was open and empty as he walked past. She did not really enjoy the experience, but we played "stop and go" to make sure she stayed still when she had to.

Monday, 6 August 2007

Today is exactly 2 months since the first chemo treatment. It is starting to feel "normal" now, but there are still times when my mind tries to find an easy way out, a short-cut and then I realise that there is no early break from this "prison sentence".

Bianca is still in hospital, not sure when she will be discharged. They say she has some kind of viral infection, but they have not established what type. She is receiving antibiotics at the moment and was due for a chemo session today, but because her levels are not yet where they should be, her treatment will now be delayed a little bit. I feel frustrated and at times it feels as if we would never be able to get home again. And I was really hoping we wouldn't have any delays - I just want to get on with it and get it all done...

Caitlyn is still with me this week and hopefully next week will be able to go back to daycare. They had a case of chickenpox and then we needed to keep Caitlyn out of daycare to try and prevent her getting the disease. I am just glad Caitlyn is not yet mobile because at the moment I can still safely leave her on the bed knowing that she would just stay there.

It is pretty hard having to take care of Caitlyn the whole day and looking after Bianca in the hospital. So by the end of the day when Terence arrives I am ready to pass her to him and just take a break. Usually just a short break because then I have to go home, feed and bath Caitlyn, get her to bed and then my work begins - I have to wash clothes, iron work clothes for Terence, pack bags to take to hospital again, try and clean up and do some of the usual household type of stuff, wash bottles, pack a baby bag and if I am good, then everything ready at the door for the next morning. Then there is night feeding and then early next morning going back to the hospital. And then tomorrow we do it all again!

It sure isn't an easy journey, but it is manageable. Wonder if I will collapse at the end of the treatment when I have time to really sit and think and comprehend what we went through.

Thursday, 2 August 2007

It was quite an eventful day at the hospital. We had a visit from some of the Police Armed Response guys all dressed in their uniforms and with their big guns. We also had some fairies and pirates paying us a visit. Some of the Victoria University students dressed up and two ladies from the Child Cancer Foundation dressed up as pirates. Bianca got some fairy wings and a wand and then a colouring and sticker book.

Charlotte, a medical student, also paid us a visit. She is using Bianca’s information as part of a case study she needs to submit. So we had a long chat and she also did an examination on Bianca i.e. listening to her heart and so on.

Bianca also played “What’s in Ned’s head” with Kate, the play specialist. It is a game where you have this head and then there are cards with pictures. You then have to put your hand through one of the holes in the “head” and feel around until you find the item that is on your card. Bianca absolutely loves this game.

Caitlyn was a bit overtired because she did not sleep very well with all the visitors we had. At least she doesn’t get too grumpy when she gets tired so that helps. I had the pram with me in the room and that is helpful to strap her into when she gets tired of lying on the bed or too wriggly in my arms.

It is good to see Bianca still smiling and having fun. Thank goodness for Kate. At times I get quite exhausted and don't have a lot of energy to play. I am just grateful Caitlyn is an easy baby so when she is with me at the hospital, it is not too hard. But let's not be mistaken, it is hard work being stuck in isolation with a baby who needs you and then a sick child needing help moving machines around when she wants to go to the toilet.