Goodbye 2007 and hello 2008

I cannot believe that we are here on 31 December 2007, the very last day of this year. Looking back, this year did not turn out the way I imagined it would at the beginning of 2007. It was an eventful year for us. Some of the things that happened:

• Caitlyn was born 22 February 2007 and Bianca was so very very excited to become a big sister.
  
• Then in May Bianca got tonsillitis and I thought it was the worst 2 weeks of my life, it was the first time in her life that she got so sick that she went completely off her food, just lay there and was sad, emotional and clingy.
• In middle May we signed a rental agreement for a new rental home (to move into middle June).
  
• On the 31st of May I was made a job offer for a position that I really really wanted.
• On the 1st of June Caitlyn started daycare and later we would have to remove her.
  
• On the 2nd of June Bianca was admitted to hospital.
• On the 5th of June we knew she had some kind of leukemia.
• On the 6th of June we knew it was Acute Lymphoblastic Leukemia and she got her first chemo treatment, surgery to insert a port, a bone marrow aspirate and a lumbar puncture. I also had to email my new employer to let them know that I would not be able to start work on the 18th of June.
• Bianca celebrated her 4th birthday party on the 8th of June in hospital with kids she never met before and couldn't blow out any candles. She turned to me and said "but mommy, my friends aren't coming". Later on this day she had an injection into her leg and cried for an hour afterwards.
• So many more things happened.
  

Suddenly the tonsillitis seemed like nothing in comparison...

• Today is exactly 213 days since Bianca was first admitted on the 2nd of June.
• It is exactly 208 days since she started her very first treatment.
• We had approximately 164 doses of chemo until today
• We had approximately 59 doses of steroids
• We had 9 injections into Bianca's legs
• We had 1 surgery to insert a port
• We had approximately 11 spinal taps / lumbar punctures
• We had approximately 23 blood product transfusions
• We had approximately 77 hospital stays (of which 39 days were spent in isolation)
• We had approximately 50 different tests such as X-ray, Echo, CT Scan, Ultra Sound, Cardiac Monitor)
• We had 4 bone marrow aspirates
• Bianca lost her hair twice
• We had 26 unusual things happening such as having Bianca on oxygen, bronchospasm and so on)
• We had a nose tube inserted 4 times
• Bianca had a severe reaction to one of her chemo treatments and that required immediate assistance and admission into hospital
• Bianca had kidney stones
• We traveled approximately 7000 km (probably approx. 4350 miles) from home to the hospital and back again.
• The list goes on...
  

When Bianca was admitted and diagnosed it was at first a huge shock and the most devastating news to us. But then we made the decision that we would approach this one step at a time, one day at a time. It is easy to want to become impatient and just to speed up the process or to try and find an easy way out, but then I had to remind myself that we will just have to be patient and follow the road as it came along. At times it did feel like a prison sentence. I mean either way I look at it, treatment will still take a bit more than 2 years. There is no way to speed it up, there is no "getting out early". This has become our new life, the life we had before, we left behind on the 2nd of June and we entered a new life that was completely unknown and foreign to us. Suddenly we had to get used to words we never heard of before in our entire lives. It is also an exhausting life, like a race that you just have to keep running and running. It was almost like being pushed off a diving board and we had no choice but to keep going.

Of course you do get used to it. At first all you want is "normal". Then you start realising that "normal" is just what you are used to and this has become "normal" to us, the hospital visits, the isolation and the daily medicines.

Bianca taught us so much. She just accepts what comes her way, without question, but fully trusting that we are making the right decisions for her. She might cry now, but then it is forgotten and the next moment she smiles again. We had to slow down and we had to live for the moment.

Way back we decided that when we look back on this journey we wanted to remember the fun times. And looking back over the past 213 days, I can honestly say that we have had many many times of lots of fun and I believe that we will be ready for 2008, no matter what comes along, to continue this journey as we fight leukemia.

So for 2008 I wish you just the very best, I wish you lots of fun, I wish for times where you can slow down and just enjoy the moment and when you have some down days, just remember that there is a little 4 year old girl (don't tell her I said "little") who can still smile, dance and sing silly songs, no matter what comes her way. So I leave you with approximately 645 reasons why this coming year should be a year that nothing should need to get you down, that even when you have a bad day, you can still get up and smile and have fun. We all have to live for the moment because:

"yesterday is gone and will never come back, tomorrow may never be given to us, but today is a gift because it is the present" (anonymous)

Day 42 - Delayed Intensification

Tonight was the very last oral chemo of this phase. Now it is waiting for counts to come back up. Her counts are a little bit low at the moment and she may need some blood and platelets on Thursday. I hope they will come up by then, because a blood transfusion takes really long.

We have to be at the hospital on Thursday for a blood check and then back again on Friday to see Doctor Sullivan who will be up from Christchurch. I can't wait until we have somebody based in Wellington. If we did have somebody then that would have probably meant 1 visit on Thursday for blood count and at the same time meeting with the oncologist, but Doctor Sullivan is only here in Wellington on certain days at the moment.

I heard Doctor Anne left today. She was going to stay until end January, so I am not too sure why the sudden decision, although I do have my own opinion. I'm really really sorry she left. She was with us from the start. She was there when I burst out crying the day we got the diagnosis, she was there when Bianca was admitted into hospital with a mystery virus that just did not want to go away. She was there when Bianca reacted to her medicines. So I will miss her lots and lots. I am just so thankful that we are through with our intensive phase pretty much and that she walked this intensive journey with us.

Doctor Sullivan does seem nice so that is a blessing. He also seems to know his stuff and that feels very comforting.

Tonight Bianca has a bit of a runny nose, so we are keeping an eye on it and maybe just making sure that we have a bag packed, for just in case.

Medicines today:

• Fluconozole - 10 ml at night
• Thioguanine - 1.5 tablet at night [chemo]

Day 41 - Delayed Intensification

So today was a day of "last", well actually this phase had a couple "lasts" in them.

A while ago we saw the last of those horrible Asparaginase or rather Erwinia (the 6 injections into Bianca's legs which was a replacement as Bianca reacted quite badly to the Asparaginase before). It couldn't come soon enough. So I am just so glad it is over and done with.

Then of course we still needed to get the Cytarabine which for us in all the prior phases was a little plastic gadget inserted in Bianca's leg (which we called a butterfly) so that they could administer the chemo just under the skin. So I was dreading the moment as Bianca hates it with a passion, but I really just wanted to get on with it. I was so pleased when they changed it this time round to be through her port, what a wonderful relief. But today was the very very last Cytarabine in this treatment plan.

Tomorrow will be the very last day of chemo in this phase and this is the very last phase of the intensive treatment before we start on our Long term Maintenance. And now when 2008 arrives, then we will be able to start saying "treatment only until next year".

So after the treatment today and a blood test, they had to remove the wiggle from Bianca's port and she didn't really like it, but nothing major. All in all a 5 minute visit. Not sure when we have to be back, but I suspect it is next week Friday and then we will hopefully be able find out when we will start again.

Terence and Bianca went to the fair again today and Bianca was hugely disappointed that they missed the horse rides.

Medicines today:

• Fluconozole - 10 ml at night
• Cytarabine through the port [chemo]
• Thioguanine - 1.5 tablet at night [chemo]

Day 40 - Delayed Intensification

My day started with Caitlyn waking up at 4:30 this morning and refusing to go back to sleep. Then at 09:00 she fell asleep pretty quickly, but only for an hour. I tried to catch a bit of a sleep and thank you to Sanna, she heard Caitlyn cry at 10:00 and kept her busy for a little bit. Then when it was time for her afternoon nap, it was once again just an hour. Not really enough and she was quite fussy the whole day.

Terence and Bianca went to Queen Elizabeth Park and when they got there realised that there was some or the other Vintage Fair happening. Bianca got a ride on a horse and she really enjoyed it. They also went in a tram. I think the fair is still on tomorrow and Monday and Terence is keen to go again.

Bianca had to go into hospital this afternoon at 2pm for her Cytarabine again and is due the last Cytarabine tomorrow. This will be the very last one on her treatment plan. I am so pleased they changed how they give it. Bianca hates it when they have to give it in her leg (just under the skin) and this is just so much better and less hassle.

And her mood is still really good, so we are enjoying it as much as we can. She seems to have a lot of energy at the moment and really enjoys playing lots of different games.

Medicines today:

• Fluconozole - 10 ml at night
• Cytarabine through the port [chemo]
  
• Thioguanine - 1 tablet at night [chemo]

Day 39 - Delayed Intensification

This afternoon at 14:00 Terence and Bianca had to be back at the hospital for her second Cytarabine this week. Only 2 more to go and then no more Cytarabine. They just give it through the port and they keep the wiggle in for the 4 days. It was a really quick day so that was good.

Bianca is still in great spirits so we are having lots of fun. This afternoon she acted out "The Little Red Riding Hood" along with Sanna and they pretended that Caitlyn was the grandmother who got "gobbled up". Of course Caitlyn just sat there not really knowing what was going on, but enjoying the attention nonetheless.

We phoned the hospital to confirm Bianca's neutrophil levels and they are low, but at least she is not neutropenic. The cough is still there a bit, but doesn't seem to get worse at the moment. Still keeping an eye on it.

Tonight Sanna and I went to go and see The Golden Compass at the movies and went to the Gold Lounge. It was great, although the movie wasn't really what I expected. Terence stayed at home with the girls and it was nice having a break for a change. The novelty factor is great and the waiter carried our popcorn and coke in on a tray. It had nice comfortable reclining chairs with a little fold-out table where we could put our drinks and snacks. We also ordered an Asian platter to share which they brought halfway through the movie.

Other than that, nothing major. It was a wonderfully uneventful day. I have come to appreciate days like these, knowing that they could change so quickly.

Medicines today:

• Fluconozole - 10 ml at night
• Cytarabine through the port [chemo]
  
• Thioguanine - 1 tablet at night [chemo]

A really sad story - please pray and spread the word

I read quite a sad story about a 17 month old little girl with a really rare lung disorder.

At her last scan they discovered a fast growing tumor in her kindey that might be malignant. They live in Zimbabwe and had to be flown to South Africa for urgent treatment. Unfortunately this will cost them a fortune and a lot of the costs need to be paid up front. Getting treatment in South Africa is their only hope right now. Zimbabwe doesn't really have sufficient resources to help them out at this stage.

Please keep them in your prayers and thoughts and spread the word so that they are able to raise the necessary funds. There is a site all about this little girl. Click here to read.

Day 38 - Delayed Intensification

Today Bianca had to go to hospital for her Cytarabine treatment and for a blood test. Terence and Bianca had to wait a bit because another little boy wasn't used to the temporary new consultation room that they are using now over the holiday period. So this little boy wasn't too keen on going into the new room. But eventually they were seen. Doctor Anne is back from leave and Terence discussed with her that Bianca still has a cough that seems to be a bit more often during the day, but she is not too concerned at the moment and until a fever or other infection symptoms develop, there is not much more to do other than keeping an eye on it. In the back of my mind this feels very similar to the beginning when Bianca had a cough and eventually 2 months later we dealt with a viral infection. I really really don't want to go through this again. Doctor Anne also said that from tomorrow Bianca doesn't need to take the Omeprazole anymore. So one less every day.

I stayed at home today and planned to do a whole lot, but unfortunately sometime yesterday I hurt my back a bit (although for the life of me cannot think how this happened), so it is pretty hard walking let alone picking Caitlyn up. Thank goodness for Sanna helping me out today.

So now it is Cytarabine tomorrow, Saturday and Sunday still and then Thioguanine still every night until probably Monday and then a bit of a break from chemo while we wait for counts to recover so that we can start Maintenance.

Bianca was in good spirits today and tonight decided to play "school". I had to be the teacher and she brought me an apple. At some point Daddy joined and she thought it was absolutely funny that Daddy got his answers wrong and then when he talked in class he was asked to sit in the corner. She thought it was very very funny. I think this will become a new favourite game.

Usually Caitlyn hates having stuff put on her head, but today Sanna managed to get this crown on her head and we managed to take the cutest photo. Caitlyn does the cutest things now. She'll wave when you say "bye-bye" and wave to her. She is able to clap her hands when you do. And today she managed to stand by herself for a second or two. It is so cute when you play music and she will move her head and her shoulders.

Medicines today:

• Omeprazole - 1 capsule a day
• Co-trimoxazole - 6.25ml twice a day
  
• Fluconozole - 10 ml at night
• Cytarabine through the port [chemo]
  
• Thioguanine - 1 tablet at night [chemo]

Day 36 - Delayed Intensification and Christmas Day

It was a cold and rainy day. So we ended up spending the day at home.

Caitlyn woke up first and Terence had to entertain her. Then when he got bored trying to distract her, we decided to wake Bianca up to let her know that Father Christmas came in the night. She was very happy that he left her a Hungry Hungry Hippo game, just like she asked for.

We didn't do much, just relaxed at home.

We were so happy that Bianca was in a good mood, that she wasn't in hospital and that we ended up spending the day together. Our hearts go out to those who were not able to be at home or not able to be together and pray that they somehow managed to have a special day.

We were supposed to go in to hospital for Bianca's Cytarabine treatment, but Doctor Sullivan decided we could wait until Thursday.

Thank you to all the nice messages and wishes and thank you for keeping us in your thoughts and prayers.

Medicines today:

• Omeprazole - 1 capsule a day
• Co-trimoxazole - 6.25ml twice a day
  
• Fluconozole - 10 ml at night
• Thioguanine - 1 tablet at night [chemo]

Day 35 - Delayed Intensification and Christmas Eve

Sanna was very kind and offered to get up for Caitlyn in the morning so we could sleep in. Thank you so much Sanna.

Sanna asked Bianca if she would like to call Father Christmas and so they dialed 0800 222 222 (thanks Jason for sharing the number). He was on voicemail as he was looking for one of his reindeer that went missing. Bianca was quite shocked and didn't say anything except "his reindeer is missing!". Then they dialed again and then Bianca said "hello... bring lots of presents please".

We decided to do a Christmas meal and open presents on Christmas Eve. It did require a bit of creativity around Caitlyn's routines and Bianca's medicine schedules. But I think overall it was quite successful.

We decided to stop Bianca eating and drinking at 2pm. Then at 4pm we gave Bianca her Thioguanine and then by 5pm she was allowed to eat again. Usually we would give this medicine just before bedtime after supper, but we decided to do things a bit differently. Then we decided to let Caitlyn open her presents first by around 4pm, then supper by 5pm, then bath and then bed. And then that way we tried to prevent her getting too hyped up. Bianca "helped" Caitlyn open all hers. After all that is what big sisters do...

After Caitlyn has gone to bed we had our Christmas dinner. Nothing major. A small lamb roast, some Swedish meatballs, potatoes, rice and vegetables. We each had a glass of wine and Bianca had some chocolate milk in a wine glass just to be a bit different.

Not sure if it was the chocolate milk, the wine glass or just because of all the excitement, but Bianca said some really funny things. Sanna was explaining that her brother and sister are both vegetarians and we asked her why she was not a vegetarian too. She then explained that as a child she was quite small and then said "and so my mom..." and Bianca jumped in with "put you into time out". We just could not help laughing.

Then as the meal progressed Bianca then said at one point "I conclude with this mess". Once again, could not help laughing.

Then it was time for us to open our presents and Bianca couldn't wait to get her hands on her mountain of gifts. Thank you so much for all the presents that we received. We really appreciate it. I tried my best to make a list so will hopefully be able to sit down soon and write thank you notes.

Bianca helped handing out presents.

Bianca couldn't wait to open her presents.

And then of course I had to do a really dumb thing before the year is finished.

I bought a new dress for Caitlyn and for Bianca. When I put Caitlyn's dress on I struggled a little bit with the one sleeve, but I figured that since it is a dress with no buttons and pulls over the head, that would be the reason, it wasn't anything major so I wasn't worried. Then of course when bed time came it was time to take the dress off. I tried pulling it off like a shirt, no go. I tried pushing her arms through, no go. The dress was just not budging. So finally we had no choice but to cut it open at the top and then slip it off the bottom. It was then that I noticed it said 3 - 6 months on the tag (and Caitlyn is 10 months already). I am pretty sure it said "size 1" in the shop, but I guess in my hurry, I took the wrong size. Terence is not going to let me forget about this one... :-). So this was the day I had to cut my baby from her clothes.

Medicines today:

• Omeprazole - 1 capsule a day
• Fluconozole - 10 ml at night
• Thioguanine - 1.5 tablet at night [chemo]

Wishing you a very merry Christmas

Just wanted to wish you all a very merry Christmas. I wish for you a wonderful day where you are able to be with family and friends.

Thank you so much for all your support. Without your support, it would have been so much harder to fight this battle.

Stay safe!

Day 34 - Delayed Intensification

Today was a wonderful day.

We are not too sure what Bianca's counts are like, but expecting it to be a bit on the low side so we are trying to avoid crowds at the moment.

We really wanted to take Bianca to see the Bee movie that has just been released. Of course we could just wait for the DVD to come out, but Bianca loves going to the cinema, getting popcorn and so on. So this morning Terence and Bianca went to the Gold Lounge at Village Sky Cinemas at Queensgate. It is a bit of a drive, but the Gold Lounge is completely separate from the normal cinema and when they went, it was pretty early still so they had the Gold Lounge to themselves. It was way more expensive than the regular cinema seats, but for the sake of keeping Bianca away from the crowds and seeing her enjoy herself so much was worth it in the end.

Later this afternoon we went to the beach. Sanna discovered this beach which is at the Queen Elizabeth Park, this is approximately 20 minutes drive from our house. It is like a large park area where people can go walking, horse riding, taking a tram ride and then there is also the beach. It is a very big beach and there were lots and lots of shells. It didn't have huge waves so were perfect for the kids and the water was not too cold, which was great. Caitlyn loved crawling into the water and tasting the sand.

Medicines today:

• Omeprazole - 1 capsule a day
• Fluconozole - 10 ml at night
• Thioguanine - 1.5 tablet at night [chemo]

Day 33 - Delayed Intensification

Today was just a nice relaxing day. Nothing major, apart from expecting Bianca's counts to be a little low at this stage. We pretty much spent the day at home. Terence had to mow the lawns and Bianca decided to help him for a little bit and then afterwards she wanted to water parts of the garden. She had lots of fun and was laughing and smiling. It's good to see her like this.

Caitlyn is very very busy and quick. So I was on the go when she was not asleep. I do enjoy this phase of her development and she does the cutest things. She has now learned to wave and clap hands and of course when she stands up against the little green plastic table, then she "walks" pretty fast. She is 10 months old today.

I cannot believe that Christmas is so very close. But in saying that we are nearly ready. Just still need to draw up shopping lists to make sure we have enough food and other things to see us through when the shops are closed.

Bianca is so excited and she keeps pointing out the presents with her name written on it. It will be interesting to see how Caitlyn will be on this day.

Jono from Plimmerton Presbyterian Church came past today to drop off some Sunday School activities that I can do with Bianca at home. I am hopeful that once she reaches Maintenance her counts will stay high enough all the time so that I can take her again, up to now her counts were either too low or she was stuck in hospital. But at least in the meantime I will be able to do some interesting stuff with her, so thank you so much!

So tonight I have a "date" with a huge pile of ironing :-).

Medicines today:

• Omeprazole - 1 capsule a day
• Fluconozole - 10 ml at night
• Thioguanine - 1 tablet at night [chemo]

Day 32 - Delayed Intensification

This morning we went to the hospital at approximately 9:00. They were really really busy and so eventually at 11:30 Bianca managed to get her Cytarabine. While we waited, Bianca got her face painted by some people who were at Ward 19 providing some entertainment for all the kids. She chose a butterfly.

We also received a wonderful hamper from CCF and a funny puzzle kind of gadget that looks quite tricky, but I am sure will be lots of fun for Bianca - thank you so very much.

Bianca is still getting Thioguanine every evening at home until next week. And then next week she will have her final 4 doses of Cytarabine. We have to be back at the hospital next Thursday and so will be able to spend Christmas day at home and we won't have to "rush" to get to the hospital. I am very pleased that we will have the opportunity to spend the day together as a family.

Bianca seems to have a bit of a cough and I am just hoping it does not develop into anything. It is not very regular or persistent at the moment, but it is bringing back memories of our 34 days in hospital with a viral infection.

At the moment it almost feels like the last lap of the race. The end of the intensive treatment is so very close and at times I want to get quite impatient as I just want to get there now. Reaching Maintenance feels quite good, but at this stage I realise that the past 6 months were quite full on and at the moment I feel a bit exhausted. It is hard imagining my life without going to the hospital or administering medicines.

Medicines today:

• Omeprazole - 1 capsule a day
• Fluconozole - 10 ml at night
• Thioguanine - 1 tablet at night [chemo]
• Cytarabine (through port) [chemo]

Just a thank you after the Christchurch trip

I just wanted to take a quick opportunity to say thank you to everybody at CHOC for helping us on Tuesday even though you were already really busy and this is also thank you for helping out with the return flights. Thank you to CCF for telling Father Christmas that Bianca would be at CHOC - he left her a really big present and wow, it really made her day. She has already tried it out at home and I think it will become one of her favourites. Also a big thank you to Ronald McDonald house in Christchurch for letting us stay. I have never stayed at RMH and couldn't believe what a well run facility it is. I could not have asked for a better "home away from home". And then of course thank you to all our wonderful nurses as well as Karen at Ward 18 whose difficult job it was to organise the travel with really short notice. You also had to deal with all my questions about the trip. So thank you to all involved!!!

An earthquake tonight

Tonight I felt an earthquake. I was at the desk busy updating the blog and felt the desk and chair move a little bit, just very briefly. Then when I went into one of our electronic newspaper sites saw that there was magnitude 6.8 earthquake in Gisborne. You can read the article here. This is the second one I felt since we came more than 3 years ago.

Day 31 - Delayed Intensification

Wow, another donation for Funrazor. Thank you Alfred and Chell!

It felt really good to be back at Wellington Hospital. Don't get me wrong, Christchurch Hospital is great, but it was good to be back in an environment and with people that we know really well. Got there and Bianca asked to see Kate, the play specialist. The two of them then had lots of fun and Kate always manages to make Bianca smile. Then it was time for Bianca's chemo which was Cytarabine into her port.

We had a bit of a scare this morning at the hospital. One of the other patients (I think she is nearly fnished or recently finished with her treatment) picked up chicken pox. And I think she got a rash yesterday morning. So at first we were worried that Bianca may have been exposed on Saturday at the CCF Christmas party, but then they told us that it is highly infectious 48 hours prior to the rash showing and this would then be from Monday, so whew, big sigh of relief.

Unfortunately now that Bianca doesn't have much of an immunity it is easy for her to get things like chicken pox or measles regardless of whether she had it before or received immunisations before. And these illnesses are really serious and can cause extensive delays. And then just for all you folks out there just so that you know - it is so important for others to let people like us know, the moment their children develop chicken pox or measles, if there was a chance that children like Bianca could be exposed. This will then give us the opportunity to look at ways of minimising the risk or preventing Bianca getting the disease and of course isolating her so that she is not in contact with other cancer children in the event of exposure. Even when you are not 100% sure if kids like Bianca was actually exposed, rather give us the opportunity to take action.

In this case, the hospital was able to take some action and we are all just so thankful that the highly infectious period came after the CCF party last Saturday.

Not so long ago (well a couple of months actually) the daycare center where Caitlyn went immediately contacted us when they found out that one of the babies' older sisters picked up chicken pox. We knew that it was likely that the baby would develop chicken pox and the baby was in Caitlyn's group. This gave us the opportunity to remove Caitlyn from daycare for a few weeks to avoid Caitlyn getting chicken pox. That was really helpful!

Today I was pretty tired and after the hospital we came home. I didn't do too much today, but tomorrow will be another busy day for us. I can honestly not believe that Christmas is next week already which makes "next year" in less than 2 weeks. And of course with "next year" will come Maintenance - a big milestone in our books!

Medicines today:

• Omeprazole - 1 capsule a day
• Fluconozole - 10 ml at night
• Co-trimoxazole - 6.25ml twice a day
• Thioguanine - 1 tablet at night [chemo]
• Cytarabine (through port) [chemo]

A day in the life of leukemia

Typically on a day like Tuesday, Bianca would stop eating and drinking from midnight the night before to prepare for theatre. We went in early in the morning - We had to be on the ward by 08:00.

Here Bianca is arriving at CHOC - the Paediatric Oncology unit in Christchurch.

Usually she would be seen by a doctor or a registrar and they would typically listen to her heart, have a good look for any spots or rashes or any other problems that might be visible on her skin. They also feel around her neck and on her tummy. This particular photo was taken in Wellington.

A nurse would access her port by putting in a line into the port. The port is sitting under the skin. Bianca likes helping to clean the skin, but the nurse usually does it too. Bianca doesn't always enjoy the experience of getting her wiggle put in and sometimes it makes her cry. Not so much that it is sore (we put Emla cream on and this numbs the skin), and she soon smiles again after this. In Wellington we have Kate (the play specialist) and she is absolutely brilliant at providing distraction and so the experience is more fun than traumatic. We really missed her when we went to Christchurch. Kate is definitely one of the favourites at Wellington Hospital.

The nurse would usually draw some blood at the same time.

Throughout the day, they would take Bianca's saturation levels, check her pulse, take her temperature and take her blood pressure. On Tuesday they also had to check her urine for traces of blood as this is a possible side-effect of the Cyclophosphamide.

On Tuesday they started off by injecting some Cytarabine (chemo) into her line. Previously this would go into her leg just under the skin through a little plastic gadget that we call a butterfly. She really hated this, but it was just fine through her port, so I am very glad they changed it to this process. The nurses have to wear protective clothing when administering chemo.

They then started hydration in preparation of the Cyclophosphomide that is then given after 2 hours of hydration.

Bianca was also given Ondensatron through her line in case she would feel a little sick.

Then it was time for theatre. We waited in a room and we usually complete some forms to give consent and is then seen by an anaesthetist.

After theatre, Bianca was taken to a room to recover.

On Tuesday the procedure was a lumbar puncture into her back and they injected some Methotrexate (chemo) into her spine. The redness on her skin is the stuff they used to clean the area before starting the treatment.

Bianca was all happy and smiley when she woke up.

When we came back from theatre, they started Bianca's Cyclophosphamide (chemo) administered through her IV line as soon as the 2 hours of hydration was completed. This took 30 minutes to run.

I also gave Bianca her morning medicines (Co-trimoxazole and Omeprazole). This is usually given at the same time as breakfast, but on a theatre day Bianca is not allowed anything to eat or drink until after theatre. If it is not a Tuesday, Wednesday or Thursday then just Omeprazole and sometimes a steroid called Dexamethasone.

After the 30 minutes, they then give 4 hours of hydration.

Then in the evening at the same time of supper Bianca got Co-trimoxazole and Fluconozle. If it is not a Tuesday, Wednesday or Thursday then just Fluconozole and sometimes there is also a steroid called Dexamethasone which we don't have at the moment.

Then 2 hours after supper it was time for chemo number 4 (Thioguanine). We have to minimise handling the drug and we wear gloves when we give Bianca chemo at home. This one is a small tablet and Bianca chews it and then drinks water. We are not allowed to crush it, but if we want can dissolve it in a syringe with some water, and this process would take approximately 5 minutes.

So this was pretty much our day on Tuesday which was our Day 29 (Delayed Intensification).

It is not always like that and there are different medicines at different times - sometimes there are lots on a particular day and sometimes there are less.

The medicines we give at home are usually given in the morning with breakfast, then at supper time and then chemo drugs like Thioguanine and Mercaptopurine are given 2 hours after supper and cannot be given with citrus or dairy. Then usually there needs to be an hour after the chemo before she can eat or drink anything again.

There is another chemo drug we sometimes give at home called Methotrexate which she takes by mouth once a week and this is not given at the same time as the lumbar puncture procedure where Methotrexate is given in the spine. All other chemo treatments are usually given at the hospital. We don't have the oral Methotrexate in this phase.

For this phase I created a form that we keep in the kitchen so that we are able to tick off when we give medicines. Thank you Chris at Ward 18, I borrowed your idea.

Every phase has different combinations of different drugs and medicines and there are a few regulars that we have to give on an ongoing basis for now - Co-trimoxozole (Tuesdays, Wednesdays and Thursdays), Fluconozole (every night), Omeprazole (every morning). Some phases have more drugs that require hospital visits and then there are other phases where there are more oral medicines that we can give at home. Either way, Bianca needs to visit the hospital on a regular basis to check her blood levels and so on.

The phases in Bianca's treatment plan are:

• Induction (aimed at getting children in remission by the end of the 5 weeks).
• Intensified Consolodation (56 days)
• Standard Interim Maintenance (56 days)
• Standard Delayed Intensification (42 days of giving chemo with allowance for blood counts to recover).
• Standard Maintenance (84 days repeated until the date on which the Standard Interim Maintenance was started and will run for 2 years, so as an estimate we will be in this phase until approximately 11 September 2009).

We are expecting to start with the Standard Maintenance phase somewhere in January 2008 as soon as her counts are at the required level. In this phase Bianca will get daily and weekly chemo at home (along with the other ongoing medicines), there will be a chemo once a month in hospital through her port as well as Dexamethasone 5 days each month and then once every 12 weeks she will go into theatre for Methotrexate into her spine.

Starting dates and total time on each phase depends on blood count and sometimes there are delays if it takes the body longer to recover after some of the treatment or if there are infections.

Not all kids have the same treatment plan and we are on the IS Study Arm on a clinical trial (AALL0331). There are lots of factors taken into consideration when they choose a treatment plan, things such as age, type of leukemia, response to the treatment, the initial diagnosis and so on.

Day 30 - Delayed Intensification

Thank you, Bruce Lake, for your donation to the funrazor initiative. I really appreciate it.

Yesterday was Day 29 on the Delayed Intensification for us and it was a long and exhausting day. This morning we had to get up really early as Bianca needed to be at the ward by 8:15 for her Cytarabine and then we went back to the Ronald McDonald House to get the room ready for checkout. At that stage we were still waiting for flights to be confirmed but was told yesterday that it would be somewhere between 11:00 and 12:00. So when 11:15 came I rang the ward and asked what was happening. Eventually got an answer that we would be collected by 12:25 and our flight would be at 13:30. So we pretty much spent the morning waiting for a telephone call and a fax. The traffic was a bit bad on the way to the airport and I was worried we may run late (but then I didn't really know distance to the airport) so we made it in time. And then as luck would have it, our flight was delayed and we eventually left at approximately 14:30.

It was in the news today that Wellington and Christchurch reached an agreement with regards to the care of cancer patients. You can read the article here. I'm pleased they finally made a decision and reached an agreement. The part that I am not too happy about is the whole travel thing which will continue. "Canterbury's chief medical officer, Nigel Millar, said children would still need to travel to Christchurch or Auckland till two paediatric oncologists were appointed to Capital and Coast, but it was then hoped that children would be cared for in the centre closest to their homes."

I guess my understanding was that with the agreement, we would have one of the other oncologists coming to Wellington when necessary to work with the locum and so minimise the travel for families who would normally be treated in Wellington.

I found the whole travel experience really tough even though it was just for approximately 3 days and it was really exhausting. Everything felt last minute. I also found that with the extra patients that all came in for their theatre day yesterday, that day ward was so extremely busy and noisy and we basically had to sit there the whole day from 8am to 5:30pm and it wasn't as if Bianca was able to just "escape" to get a bit of peace and quiet. She was very good though and didn't once complain.

This was the day ward. Bianca was on the bed in the top right corner. There was another bed next to Bianca and another little girl sat on this bed. Now imagine this room with 2 / 3 kids playing by the playstation (next to the Christmas tree), and adults sitting on all the seats (6 or 7) talking and one or two other little kids playing around. The room was pretty busy the whole day with people coming and going.

Fair enough the travel will hopefully not be forever. I think they estimate it to take more or less 6 months. But then on the 5th of December it was exactly 6 months for us since Bianca was first diagnosed and I can honestly say that it's been the longest 6 months for us. It felt like forever. Specifically for A.L.L. there are weekly treatments during the intensive treatment and some of these include theatre days (sometimes once a week for a couple of weeks in a row) and for other patients it means admission into hospital for a week or so per specific treatment.

During the past 6 months Bianca probably spent in the region of 80 days in hospital with various infections. Sometimes she was able to continue with her chemo, even though she was still in hospital and I honestly don't know how well I would have coped if I was stuck somewhere else far from home with no support whatsoever. There were times where Bianca was able to go home for visits in between antibiotics and she was able to see both Terence and myself as well as her baby sister as often as possible, but if she was far away from home, then that would not be possible. Now with this trip, it took a day and a half for her to start asking when she would be seeing Caitlyn again.

Don't get me wrong, I know very well that the agreement is really necessary and that Wellington can really benefit from the extra support.

What makes me cross is that it should not have come to this point. We should have had a locum in place before Doctor Anne resigned, they should have had a contingency plan in place when Doctor Liz (the other oncologist) first resigned. They knew it was going to take 6 months to recruit new oncologists and it would take 3 months for their review and to me it felt as if they all just sat there waiting, doing nothing until now when it became a crisis.

So yes, unfortunately we are now at the point where families have no choice but to travel (families that would not normally have to travel) and yes, it will take time to get the whole agreement in place. I am just unhappy that it got to this point.

I am glad we are going into Maintenance soon and hopefully any future travel for treatment will be minimal for us, but I am not certain to what extent we will end up being affected.

So I guess I will celebrate the decision when it is all in place and families won't be put in this position anymore, but until then will remain sceptical.

Medicines today:

• Omeprazole - 1 capsule a day
• Fluconozole - 10 ml at night
• Co-trimoxazole - 6.25ml twice a day
• Thioguanine - 1 tablet at night [chemo]
• Cytarabine (through port) [chemo]

An exhausting day

Today was an exhausting day. It started with us being at the hospital already at 8am.

First they gave Bianca her Cytarabine through her port (thank goodness because this is usually given into her leg just under the skin which she hates). So this was quick. Then they started her on hydration. Around 11am or so (can’t remember the exact time) Bianca went into theatre to get Methotrexate into her spine. This was done as a lumbar puncture. When she eventually went back to the ward, they started her Cyclophosphamide after the 2 hours of hydration which they started before theatre. This then took 30 minutes to run through IV. Then they had to give 4 hours of hydration afterwards and check her urine to make sure there was no blood in her urine. And then tonight 2 hours after supper I had to give her a tablet (Thioguanine) which lucky she was able to chew as she hasn’t yet learned how to swallow tablets and you can’t crush it up and they don’t supply it in a liquid form.

So basically she was at the hospital from 8am to 5:30pm – a really long day. We were in the day ward and it was noisy and busy the whole day. I guess that made it more exhausting because it is a room with two beds, some couches, a play station, a TV, games, toys and books. So Bianca and another little girl occupied the two beds and throughout the day there were kids coming and going, playing on the play station, people waiting and chatting on the couches, people waiting to see a registrar, discussion between parents and doctors and so on. So I felt a bit overwhelmed by the continuous buzz of activity. I felt that the day room in Wellington has never been this crowded or busy at any given time, but I guess with all the extra patients from Wellington as well as the Christchurch day cases and any other South Island patients it is not surprising that they were so very busy.

I also really missed Caitlyn, tonight on the way back to Ronald McDonald house, Bianca asked if we would see Cailtyn tonight and I had to explain that it would only be tomorrow night. I would have really liked to bring her along, but then I do have to keep her routine in consideration. And certainly if we stayed for longer, then I definitely would have brought her along. The past few weeks, Terence and I haven’t seen each other all that much because Bianca was in for approximately 10 days, out for a few days, then back in for nearly 10 days, out for Saturday and Sunday and Monday we flew to Christchurch. And now Sanna is not feeling well and she is fully responsible for Caitlyn during the day. Lucky we are flying back tomorrow so I can give her a hand.

I saw another mom today and she was told yesterday that they had to come to Christchurch today. So very short notice and it doesn’t really feel fair. I also saw several other patients who were diagnosed in the last few weeks or days and my heart goes out to them. Everything so new and foreign and strange, trying to get your head around all the information, the treatment plan, the different medicines. I said to the one mom who was sitting there with her container full of medicines that when our kids were babies we used to always pack the nappies, bottles and so on. Now you never go anywhere without packing the medicines, rubber gloves, syringes and so on.

I just can’t wait to get to Maintenance. Even though it is still a long long time of medicines every single night, it will hopefully bring us to a point of a better routine, more certainty and certainly it will be a milestone that we would have reached. I remember in the beginning how I longed to just have normality again, but this has become pretty normal to us and one day when we have no more medicines to give, it will feel as if there must be something missing. But then even when the two years of treatment is all up, the checkups will continue, first every few weeks, then every 3 months, then eventually twice a year and at some point once a year (I guess) until she is 20.

But all in all, we have a lot to be thankful for. Bianca is coping pretty well and she doesn’t have some of the severe side effects that some of the other children get. Looking back, the whole situation pretty much taught us to live for the moment, take each day as it comes, take nothing for granted and to slow down and take stock of where you came from and where you are heading.

Medicines today:

• Omeprazole - 1 capsule a day
• Fluconozole - 10 ml at night
• Co-trimoxazole - 6.25ml twice a day
• Methotrexate - lumbar puncture [chemo]
  
• Cyclophosphamide (IV with a total of 6 hours hydration) [chemo]
  
• Cytarabine (into port) [chemo]
  
• Thioguanine - 1 tablet at night [chemo]

And we are in Christchurch

This morning as we waited for the shuttle to get us, Bianca and Sanna first played the Billy Goats Gruff game. This is where one of them pretend to be the troll and the other the Billy Goats Gruff and then they swap. Bianca really enjoys this game. Another favourite of Bianca is to play the Gingerbread game. This is where you have to pretend to “roll her out”, then put her in the oven. Then she will say “let me out, let me out” and then you have to pretend to open the oven and then she will jump up and run away. So then it was Sanna’s turn to be the gingerbread man. Bianca rolled her out, pretended to cut out the shape, then put her in the oven. Then Sanna said “let me out, let me out” and then Bianca “opened the door” and before Sanna could jump up Bianca said “I closed the door again”. So then Sanna just had to lie there and pretend to be baked. It was really funny.

Got to the airport and our flight was on a small aeroplane. Elijah and his family were with us on the same flight. It was a “bumpy” ride and we had quite a bit of turbulence. Bianca had lots of fun and she enjoyed the whole experience of being on an aeroplane. For me the downside was that our flight was delayed for 30 minutes.

I haven’t seen much of Christchurch as yet, but the little bit that I saw seemed really nice, the hospital is right by the Avon and you can take a little boat out if you want, it is quite peaceful and on the grassy areas there are some benches and people can feed ducks and so on. It is quite flat (a good thing, because I had to carry Bianca from Ronald McDonald house to the hospital).

The hospital is quite a bit different. She will get her treatment in CHOC which is the dedicated children’s oncology ward. So tomorrow we will get a proper look at how they work. Bianca didn’t like having her wiggle put in and so she cried a bit, but I suppose mostly because of the strange environment.

Saw Kyah’s parents and it was good to catch up with them. They have over 700 beads, so quite a lot that they have been through.

This evening at the RMH we had the Army band playing and singing Christmas Carols and we had a nice typical Christmas meal – turkey, potatoes and vegetables and chocolate pudding.

The house seems really nice and there is a really nice play area inside and outside for Bianca.

Tomorrow morning we have to be there at 8am and it will be a long long day.

Now I am off to bed for an early start tomorrow morning.

Medicines today:

• Omeprazole - 1 capsule a day
• Fluconozole - 10 ml at night

Meeting with Doctor Sullivan from Christchurch

Today at 10:30 we met Doctor Sullivan. He is one of the Paediatric Oncologists from Christchurch. He wanted to meet with us to discuss Bianca's treatment plan over the next little while. He seemed really nice and Bianca really liked him too.

I learned something today, he mentioned that sometimes children like Bianca get infections as a result of the chemo (like a side effect), but it was hard to know whether these kids get infections because of the chemo or if it is because they were just likely to get an infection anyway. He went through Bianca's treatment plan from Day 1 and basically everything about Bianca's leukemia points to a good prognosis. Her age, her response, the number of white blood cells when she was first admitted and so on.

I asked him how long ago we could have known that she had leukemia. A long while ago, long before June this year, we noticed lots of bruises on Bianca's legs. It must have been a good year or so ago. But then we always assumed it was the way she played or it must have happened at daycare and so on. So we never really became worried. Doctor Sullivan said that if at the time we just did a blood test, it probably would not have showed anything (unless if we did a bone marrow test which they wouldn't have done in the first instance anyway). And because it is "Acute" it sort of waits until it is "ready" and then it takes off quickly. So it is good to know that even though we saw all the bruises, it wasn't like we could've done something, but didn't do anything.

I also asked him whether the Cytarabine / Ara-C specifically had to be administered into a plastic gadget going just under the skin. We call the plastic gadget her butterfly. She really hates this one even though it is not an injection into the leg, but I understand the chemo makes it feel like pins and needles when it goes in. And of course she sees the needle and might actually think that it will be an injection into her leg. On our treatment plan it says that it could either go into the central line or into the plastic gadget and whilst one way does not present a higher risk of side effects than the other, he will find out if it is practical (I really hope so).

Overall today was a great day. Bianca was in a wonderful mood, all playful and giggly and it almost felt like the old days, apart from her not having any hair and not being able to run (due to the chemo she gets). Today turned out to be a nice family day. Bianca and Daddy ran through the sprinkler, or rather Daddy did and Bianca thought the water was a bit cold. She did have fun spraying her dad though.

Bianca's counts are high enough so chemo will happen this week. Not long now and then we are done with the Delayed Intensification phase and we will move onto the Standard Maintenance for the remainder of the 2 year period. Tomorrow morning we fly off to Christchurch, Tuesday chemo is scheduled to happen again and then hopefully on Wednesday we are back.

Medicines today:

• Omeprazole - 1 capsule a day
• Fluconozole - 10 ml at night

CCF Christmas party

At the moment, although the trip to Christchurch is still a bit of a "not quite sure what to expect", I do have a few answers thanks to one of the wonderful nurses at Wellington (Kate). I'm sure I'm probably getting on her nerves a bit, but it is really important for me to have as much information as possible. Part of it to discuss with Bianca before we fly on Monday. I don't really like keeping things to the last moment and I found that it is far less traumatic when I discuss things with her and she knows what is coming. What makes next week really tricky is that it will be in a place and with people Bianca's never met before.

But enough complaining.

Saturday was a great day. It was the CCF Christmas party and wow, it was great fun. There were lots of things to do.

CCF prepared a special artwork for the special guest and they wanted all the children to participate, so Bianca chose a button to stick down. It was a beautiful artwork.

There was a big bouncy castle type of thing in the shape of a big caterpillar. So Bianca went in with Sanna and with Terence. It was quite amusing seeing the people go in one side and come out the other "hey look, that worm has people!".

We met a surprise guest - it was Frankie Stevens. I've seen him on TV as one of our Idols judges and I've heard him sing before. So he answered some questions and then he sang some songs. I quite like his singing

It was also the official CCF farewell to Doctor Anne (even though she is still working until end January 2008). So she got to say a few words. We will all miss her so very much when she leaves. Doctor Anne also received a beautiful artwork that one of the parents painted.

And of course no Christmas party is ever complete until Father Christmas arrives. He made his grand entrance and I guess the presents must have been the highlight of the day for all the kids. Then we ended the day with some afternoon tea.

It was all so wonderfully done and it was great to catch up with some of the now familiar faces and also to see some of the other people we've never met before. Thank you so much to CCF and volunteers for all the hard work you put in, and thank you so much to everybody who contributed to make this day possible. It was really special!

Medicines today:

• Omeprazole - 1 capsule a day
• Fluconozole - 10 ml at night

An up and down day

Today was an up and down day.

Up because Bianca was discharged from hospital. Finally. Bianca had a play date with Georgia which was great, but unfortunately it's been a long time since she had a proper play date so she wasn't 100% herself.

Down, because today at approximately 15:00 we finally got confirmation that we are flying to Christchurch on Monday morning. Bianca will be admitted to Christchurch hospital and then on Tuesday she will get her treatment (including going into theatre for a lumbar puncture) and then the plan is that she will fly back on Wednesday. But just like they said "the plan is for somebody to be in Wellington to do the treatment", I am not yet confident that things will go according to "plan". They haven't yet booked return flights in case Bianca needs to stay longer. It will just be Bianca and myself. Terence is on a course and it being a relatively short stay, I did not think it would be worth disrupting Caitlyn's routine. Of course the benefit would be that I would be able to see what Christchurch hospital is all about (I understand it is a really nice hospital) and so this will be useful for making decisions going forward.

I am feeling pretty disappointed and upset that it came to this. They should have had a backup plan. We all assumed that since they are supposed to have this agreement with Christchurch that somebody would have come to see us for treatment and that that would have prevented families from having to disrupt their lives. So it leaves me wondering what it will be like next year when we initially only have one locum and I can't help wondering what will happen when this person needs to take leave for whatever reason.

Of course our situation is not nearly as bad or difficult as that of Elijah (read his story here). There is a video clip as well. And certainly our situation is nothing like that of Kyah and her family. We are not the only family affected and with luck our disruption might just be a one off.

So in a way it is probably fair to say that I really should stop complaining.

But then at first when we got the news about Bianca being sick, our whole world came crashing down, everything we knew, we planned for came to a complete stop. So after we finally managed to pick up the pieces we became familiar with our new life, we had to adjust the way we used to live. We had to learn a new routine and finally we got to the point where we knew what was coming to some extent. We understood Bianca's treatment plan and even though the road certainly had lots of twists and turns and lots of unexpected things, we had some control with the knowledge we gained. And that little bit of control became everything to us.

And then suddenly to be told that on Monday we won't be in Wellington for treatment, we will be in a strange place with people we never met, we have been given minimal information about what to expect and at this stage the only certainty we have about next week is the time of our flight to Christchurch and that somebody will be there to pick us up. So I feel a bit anxious not having much control over this situation. And of course it will be really hard not seeing Caitlyn during this time, and certainly if we were due to stay much longer, then I would have taken Sanna and Caitlyn along with me.

Tomorrow is the CCF Christmas party and I fully intend to enjoy it as much as possible!

Medicines today:

• Omeprazole - 1 capsule a day
• Fluconozole - 10 ml at night