And we're back!

On Sunday Bianca had to go to hospital for a blood test and platelets. So first they did the blood test and then had to wait for the results to see if platelets were needed. During the waiting time, Terence and Bianca went to a park to play. When they got back, she needed platelets, but they started quite late so basically they spent the whole of Sunday at the hospital.

Today Bianca had to go to hospital for her chemo treatment. I was going to take her, but last night was a difficult night as Caitlyn has a cold at the moment and does not sleep very well so she kept me up a bit. Just before Terence and the kids left, Bianca became sick and her nose tube fell out. At the hospital they first did a blood test to ensure her levels were high enough for her treatment she was due to get today. While they waited for the blood test results, Bianca had to get an ultrasound - a while ago Bianca had kidney stones so this was a routine check. The Child Cancer Foundation organised a photography session - Renée, a photographer donated her time. Along with her there were some other activities including face painting. So Bianca got her face painted like a tiger and Renée took some photographs of Daddy and Bianca.

Bianca then received her treatment, the one was into her port and the other an injection into her leg. She was extremely brave and kept her legs really still. They then had to wait 2 hours to ensure that there were no allergic reaction to the injection. While they waited, daycare phoned and asked Terence to collect Caitlyn as she was not really settling well (so we booked an appointment with the GP for tomorrow afternoon).

Just after an hour had passed, Bianca suddenly had another broncospasm (a coughing fit) and as a result she got sick again. She also developed a rash (and we are not sure if this is a reaction to the injection or something else). So she needed to go on a nebuliser as well as oxygen. So tonight she will be staying in hospital and they will see what she is like again tomorrow and then decide if she will still have to stay or if she can come home.

She was pretty tired after it all and the medicine they gave her made her sleepy as well.

So all in all an eventful day for us.

Caitlyn started making distinct sounds and she would babble "mamamamama" and Terence said she said something that sounded very much like "Ianca" when she saw Bianca this afternoon. Maybe just his imagination, but still pretty cool. Here Caitlyn is trying very hard to crawl.


And we're finally home

Today Bianca was discharged from hospital - after spending 34 nights in hospital. To date Bianca has spent 52 (non-consecutive) days in hospital of which most were in isolation. I had to make approximately 4 trips to the car to clear the room and left with a whole bag full of stuff we need to use for Bianca - extra gloves, extra syringes for administering oral medicines, several bags of Bianca's tube feeding formula, a loan pump from the hospital and of course the medicines we need to give Bianca.

It really felt great having all four of us at home.

Caitlyn is able to sit without support for a little bit at a time. She can't put herself in the sitting position yet, but if we put her in a sitting position then she is quite happy and able to keep her balance for a quite a bit before falling over. When we put her on her tummy she is able to move around to get toys which are just out of reach. I think she will be crawling before we know it.

Tonight Caitlyn had a bath with Terence and she was playing when she got some of the bubbles around her mouth. Bianca started giggling when she saw it and thought it was the funniest thing ever.

The other day Terence borrowed a Noddy book from work (it being a library). Bianca really enjoyed reading this book with him and she was able to point out all the "Noddy" words in the book.

Bianca discovered Dora the Explorer during her time in hospital and her two favourite DVDs at the moment are Dora the Explorer Pirate Adventures and the Curious George movie. There is one bit in the Dora movie where they plan to have a show and they need to dress up as pirates. They lost their costumes which they kept in a treasure chest because the pirate piggies thought it had gold inside. Dora then have to go with her friends on an adventure to get their treasure chest back. So at one point they get to a "singing bridge" and this bridge sings the songs wrong and Dora and her friends have to sing the correct words before they are allowed to go through. So the bridge will sing something like "twinkle, twinkle little star, how I wonder what you had for breakfast". Bianca loves this bit and she thinks it is so funny.

Bianca will need to be back at the hospital for a blood test and possibly a platelet transfusion on Sunday - but it is just a day trip and then on Tuesday she will have another day trip for chemo.


A day out

Yesterday Bianca had to go for another X-Ray. Bianca was allowed to "help" load the X-Ray and even got to see the image on the screen. They don't have the old fashioned X-Ray prints here, but everything is on the computer. Bianca was also seen by another paediatrician for a second opinion for her coughing. They have ruled out anything serious, and it still looks like a usual viral infection. He suspects that she may have had whooping cough which she may have picked up in April or May. She would not be infectious anymore, but it will take a while to go away completely. We don't know for sure if this is the case as previous testing for whooping cough came back negative. I do understand that testing for viruses are sometimes misleading and may sometimes be negative, depending on the virus.

Bianca discovered a game at the hospital "rock, paper, scissors" and you have a little plastic gadget with a lid that you can flip closed and then you choose either rock, paper or scissors and when everybody is ready to reveal their choice, then you flip the lid open. It is just like the traditional one, except you don't use your hand. Bianca absolutely loves this game and she had a quick game with Doctor Anne and Doctor Amy. Doctor Anne is actually her doctor, but Doctor Amy often helps out with rounds. Doctor Anne is the lady next to Bianca.

This morning the doctors decided that Bianca was able to go home for the day, but that she needed to be back to stay the night. We don't yet know for sure when she will finally be discharged, but it was great to take Bianca home for a little bit. Caitlyn was at daycare so it was just Bianca and myself at home today.

The first thing Bianca did when she got home was to feed her fish. We played some games and she helped me with the washing that I did in between. And we watched Mary Poppins. Then at 16:30 we went back to the city to get Caitlyn and then back to the hospital. Bianca had quite a relaxing day that she enjoyed a lot. Thank goodness we don't live too far away. These "visits home" make the world of difference.

It's payback time!

Bianca has platelets transfused every 3-5 days when she is having chemo, and whole blood every week or so, so we kinda owe the blood bank a moral debt. She has also once had immunoglobulin when she was really low on her antibodies. So yesterday evening I went to the blood doning centre near the hospital to pay some back.

I booked in for a plasma donation - you can donate plasma every two weeks instead of having to wait 4 months like with normal blood donations, and plasma can be used for more things than the whole blood can. You have to go to a big blood centre though because they have to use a special machine to extract it.

The machine uses a centrifuge to extract the plasma from the blood, then it returns the blood back into you again. Takes about 45 minutes for plasma - they use the same machine and process for platelets but it takes about 2 hours. Here's a pic of the machine with my blood running through it - that big round thing in the middle is the centrifuge.

And here is me sitting in a chair reading Harry Potter 7 while the process goes on. Of course the staff bring around drinks and biscuits and stuff while its going on.

This is the result - one bag of plasma weighing 670g. This will be sent off in a batch with other bags of plasma to a lab in Australia for processing into the various products that plasma is made into. All products from blood coming from New Zealanders come back to New Zealand and are used here.

I'd like to encourage everybody to take some time and go do blood doning - normal blood doning will be fine too, doesn't have to be platelets or plasma. Check out NZ Blood for more info (or SA Blood if you are in SA)! Takes an hour of your time (some of which is paperwork!) and helps save lives. Don't fear the needle. And who knows - maybe if you are in New Zealand some of your blood will make it into Bianca during the course of her treatment.


Tuesday, 21 August 2007

Yesterday was a bit of a scary day for us. Bianca had to get a blood transfusion as her levels were low (this often happens as part of the chemo treatment). 15 Minutes into the transfusion, she had a coughing fit (pretty much what she has been getting all along) and so then wanted me to take the toys off the bed as she wanted to rest. I then noticed that she started breathing quite fast and she was quite sleepy. I called the nurse and Nurse Sue turned up the oxygen and stopped the transfusion to make sure that it was not a reaction to the transfusion. They then paged Bianca's doctors (Doctor Anne and Doctor Amy) and it really impressed me how quick they arrived and how well everybody worked as a team.

They realised she had a Broncospasm which made it hard for her to breath, so they gave her the same stuff you would give to somebody with Asthma when you want to clear their airways. Bianca then perked up and it was not long before she was pulling faces at the nurses and "ordering them around".

They moved us to another room closer to the nurses' station so they could keep a close eye on her. I did not realise just how much stuff we have been accumulating in our room until I had to drag it to the new room.

Here is a photo of Bianca with a nebuliser as well as a photo of Doctor Amy and Charles (one of the nurses), observing Bianca.

They brought a mobile X-Ray machine and did a chest X-Ray that revealed nothing new since the last X-Ray.

Earlier in the day, Bianca also had an Echo - almost like an ultrasound but for your heart and this showed that her heart is beating normally.

Last night Bianca was taken off oxygen and she coped really well and today she stayed off oxygen the whole day so the oxygen pipe was removed. This afternoon we moved back to the isolation room.

This afternoon Doctor Amy told us that the repeat tests for CMV were negative and so it does not look very likely that she has CMV. She also does not have any other viral infection (such as RSV) that they tested her for. So all good news. Of course it does mean we still don't really know why she is still coughing, but at least so far it does not look serious.

At the moment Bianca is still in hospital for observation until they are sure she is able to cope without the extra oxygen, but coming home does look like it might happen pretty soon.

The doctors and nurses at Wellington Hospital are extremely professional and excellent at the work they do. It really does feel comforting to be in their care.

Today Bianca received a present from the Child Cancer Foundation. It was a beanie and a little decorated bucket that a lady named Elaine made. Thank you very much.

Tomorrow is exactly a month since Bianca was admitted on the 22nd of July.

Caitlyn is also 6 months old tomorrow. She is able to sit with very little support so it looks like she will be able to sit on her own pretty soon. Caitlyn is also currently going to daycare full time. Here is a photo that Terence took. He put Caitlyn in the pram to feed her (as you can see on her face and her clothes) and then he noticed that she was sitting up.


The weekend

Yesterday I got woken up by the nurse telling me that Bianca had pulled her nose feeding tube out while she was asleep. We had to put it back in again when she was awake. It's not a pretty procedure, I guess this is why the procedure room is soundproofed. I warned Bianca that we would have to do it and the nurse offered to give Baby a nose feeding tube and nose oxygen tube too. It was better the 2nd time around, but still Bianca wasn't very happy during it. When the tube is in it is ok, just getting it in is a mission. Bianca now has
  1. a nose tube for pushing mashed food and oral medicines through (yellow)
  2. a nose tube for oxygen (clear)
  3. a central line for taking blood out, putting meds in (like a drip)
  4. 3 wires (white, black and green) that monitor her breathing and heart rate
  5. a red light on her thumb that monitors her blood oxygen levels

Robocop has nothing on us. An eye doctor came in yesterday to check out Bianca's eyes because the CMV disease can affect the eyes. He gave us the all clear. Bianca just carried on playing with her PlayDoh. She got a new set 2 days ago after the 1st time the feeding tube was put in. Now she can do haircuts and make icecreams.

I took Caitlyn home last night, and had a good night. Today I am spending away from the hospital, I went to the shops in the morning and spent this afternoon at home with Caitlyn. I will go in tomorrow, drop Caitlyn off at daycare, then go to the hospital, drop the car off there (parking is free for us) and catch a bus into work.

Caitlyn has a bit of a cough and a runny nose, we are keeping an eye on it. She also has a bit of nappy rash, so maybe another tooth is popping through sometime soon. She is eating some stage 1 baby food now and messing all over the place.


Saturday, 18 August 2007

Today we had the puppet show. Bianca gave Daddy and Caitlyn their tickets which she made the other day (Daddy had to pay $4 for the two tickets). Bianca had great fun, although I ended up doing most of the storytelling.
After that we had a bit of a picnic although Bianca didn't really eat much and only nibbled here and there. Bianca wanted me to make some loot bags so I made one for each of us and put goodies in that I know Bianca would enjoy playing with. Caitlyn got her own one with a baby toy and a teething rusk in it.

We also played "pass the parcel" and Bianca won the prize.

She really enjoys it when we are all together and we try to make things as normal as possible so that she is not too focused on being sick, so days like today turns out to be really special.


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).


Dad's day out

The Child Cancer Foundation sponsored a dad's day out on the Sunday just passed. Dean, one of the fathers, kindly organised this. There were about 20 dads of cancer children who went. We all met at the bus station - they had arranged a bus to take us to a farm in Ohariu valley, just 20 mins away from Wellington. The farm is set up as a conference venue where you can have team building exercises.

We did clay pigeon shooting with a 12 bore shotgun. I did pretty well with this, as you might expect from an ex South African. There were sheep on the hills in front of us, they didn't even move when the guns were going.
Then we went to the poles where they have pole climbing. It was just like the acrobats in the circus, except no nets (we did have safety harnesses and ropes). I didn't have a problem climbing the pole to the top, except my shoes were plastic soled and the wet grass made them slippery on the metal staples of the pole. When I was at the top I had to stand up on the pole, then jump onto the acrobat swing which was about 2 meters out from the pole. I hit the swing but couldn't grip it.

Then we went back to the conference hall and I hit a couple of golf balls away into the fields. The venue had cooked up a bunch of meat for us, so after golf we went inside and had steak and sausages and stuff in front of the log fire. All our drinks were free the whole event. Then we took the bus back to the station.

Bianca was still in hospital so I took Caitlyn home for the night - got home really late (around 9ish I think), and only got to bed around 11pm after doing all the stuff I needed to do. Then I woke up at 2am from drinking too much free caffeine drinks at the event. Caitlyn woke up at 2.30 and muttered until 3.30, then I changed her and fed her and she fell asleep by 4.30. I had set my alarm for 5.30 so I could be up and in early before the traffic hit, so I decided to do my showering stuff and ironing at 4.30 and got to sleep at 5.30, slept for an hour, then got up and got Caitlyn ready and shot in to drop her at daycare. Monday was a long day.


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.


Sunday, 5 August 2007

Today it is exactly 2 weeks since Bianca got admitted to hospital on the 22nd of July. She had a high temperature and then they have to monitor her. They then realised she had some kind of viral infection, but have been unable to verify exactly what type. She also had very low neutrophil levels which means she is unable to fight an infection on her own at the moment. This was expected after the last chemo treatments she received. So currently she is in isolation. I stay with her during the day and then Terence stays with her at night. It wouldn't be practical to have Caitlyn sleeping at hospital at night, so I go home to look after Caitlyn and trying to get some of the housework done. I have this huge pile of ironing staring at me each time I go home - but it will just have to wait for now. Then in the morning I go and take over from Terence again.

She was allowed to go home for a little bit this afternoon. With her low neutrophil levels she does need to be monitored and should also avoid crowded places and sick people. So at 11:45 we all went home. Bianca had to wear a mask from her room to the car so that she does not catch any bugs.

Bianca fed her fish and then cleaned the fish tank with Daddy. She also did some painting. And then she had a nice bath. We had to be back by 17:30 for her next dose of antibiotics.

To date, we have spent approximately 30 non-consecutive days in hospital. I could really see a huge difference in Bianca when we arrived home. She loved just being able to play with her toys and just being here with everything that is so familiar. It is funny that after that first initial week, I thought that we wouldn't have to be admitted again if I could help it, and here we are again - stuck in hospital!

We are currently doing a practical course “how to change a wriggly octopus”. Caitlyn does not lie still anymore when we have to change her nappies and she is very quick to flip onto her tummy when you lie her down on her back. That is when you wish you had a few more arms to hold her down and put her nappy on at the same time.

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.

Saturday 28 July 2007

We were allowed to go to the zoo today. It was a bit of a cold day, but it was not too bad. Bianca is not currently allowed out where there are crowds of people.

It was good to walk around, looking at the animals. Afterwards we had to go back to the hospital, but it was good just to take a bit of a break from the isolation room.


First Caitlyn pic

Caitlyn now has two teeth on her bottom jaw and there might be more coming out.

We have started her on baby food. She likes the pear at the moment, we will work on the veggies later.

The baby food she is on may be removed from shelves here in NZ as there is an ingredient that is not approved by the New Zealand Food Authority. It's approved in Europe and we haven't noticed any bad effects so we are more worried about the food disappearing than about using it. We'll have to stockpile. Prices vary between $18 and $24 per tin depending on which supermarket you buy from so it is worth shopping around. Yep, it is expensive, but supermarkets here offer petrol discount vouchers for purchases over $40 and buying a tin certainly helps push you up to that limit.

New blog created

Here is a picture of Bianca after her hair has been cut off. You can see she is still smiling. And she looks a little chubbier.

She has a plaster on her chest because there is a temporary drip line inserted into the port on her chest and the plaster is holding it in place.