Day 27 and Day 28 - Delayed Intensification

Yesterday morning was the first time Bianca and Caitlyn saw each other since Bianca was admitted earlier in the week. Bianca's whole face lit up when she saw Caitlyn, she was just so excited.

Recently Bianca started asking if we could please take her fishing and so much so that Terence managed to make her some sort of "fishing rod" with a little magnet attached to it so that she can "catch" things around the house. Sally from The Child Cancer Foundation gave us the number for the Wellington Flyfishers Club. And this afternoon they had an open day at the Capital Trout Centre. So we all went straight after her antibiotics at 13;30.

Got there, and Bianca got a fishing license allowing her to catch 1 fish. She was quite fascinated (but unfortunately not 100% herself at the moment) and after a short while and with a little help managed to catch a fish. She wanted to take it back to the hospital, but of course, no can do, so we released it back into the water.

Afterwards we had a little bit of time left before Bianca was due back at the hospital so we took the kids to a park in the city. Bianca really really enjoyed it and it almost felt a little normal - of course until Bianca took off her hat and she was the only kid there with no hair. Caitlyn had lots and lots of fun playing in the sand.

Then it was back to the hospital for antibiotics and then a blood transfusion which will take 4 hours tonight.

Will find out tomorrow if chemo is happening.

Medicines on Saturday and on Sunday:

• Tazocin (through IV)
• Gentamicin (through IV)
  
• Omeprazole - 1 capsule a day
• Fluconozole - 10 ml at night
• Metronidazole (through IV)
• Erythromycin (oral antibiotic)
  

Day 26 - Delayed Intensification

A big thank you to Patrick McHale for sponsoring me to participate in the Funrazor event, you have played an important part in making the event a success and we really appreciate it.

We featured on the front page in The Dominion Post this morning. Click here for the link. I'm getting used to no hair, although was wearing a bandanna today because it is a bit cold at the moment and I didn't realise that it would be much colder without hair.

Today I got to the hospital around 1pm. I had a few things to do this morning, so Terence stayed with Bianca until I arrived. He said that she was really happy this morning, but by the time I got there, she was tired and having a nap. Of course when she woke up from the nap, she was extremely grumpy. She did lighten up again at approximately 15:45 or so.

So I understand that apart from the bacterial infection (still can't remember the name), she has some pneumonia in her lungs. Of course I couldn't see any obvious symptoms, but Doctor Amy indicated that it shows up on the X-rays. Speaking of X-rays, she had another one this morning.

She is booked for theatre on Monday, but at this stage it is not certain whether she would be well enough to have chemo next week and we are looking at a possible delay. I am really hoping and praying that there are no delays. We are so close to reaching the Maintenance milestone.

Last night Terence went to his Christmas party, but I didn't have the opportunity to go along as Bianca is still in hospital and we don't like leaving her on her own. So Sanna babysat Caitlyn, I stayed with Bianca and Terence went to his Christmas party and then took over from me afterwards and I went home.

It was Doctor Amy's last day with us today. She's been helping Doctor Anne for a number of months now and she was really good with the kids. From Monday she will be in another area of the hospital as part of her training.

And then, now at the end of the year when you might be clearing the toyboxes or other areas in your home, please consider donating toys (toys that can easily be washed, wiped down and sterilised), books, complete board games, complete puzzles, arts and crafts items, videos, DVDs (zone 4), PS2 games and so on - basically anything suitable for babies to kids (up to 15) to Kate, the play specialist here at Ward 18. She doesn't have a budget at all and it is her responsibility to provide entertainment to the kids who spend their days at the hospital.

A lot of what Kate does involve "distraction" where she tries to distract the kids when some of the more painful and traumatic things happen like when Bianca needed those 6 injections into her leg, or when they put a nose tube in and just the other day Kate spent an hour sitting with one of the boys and in the end she managed to get him to swallow his pills successfully.

Kate is one of the reasons the kids actually enjoy coming to the hospital - there are lots of really good and popular nurses, but Kate is the one with the fun stuff. She is the one who helps the kids get through the long days. Let me tell you as a mom who often sits there the whole day - Kate is a lifesaver. It is hard sometimes to get the energy to come up with fun things to do.

If you are not in New Zealand, then do consider donating all those unwanted items to your local children's hospital. In our case, Kate relies solely on donations, so it does make it hard to replace broken or incomplete toys and games.

Medicines today:

• Tazocin (through IV)
• Gentamicin (through IV)
  
• Omeprazole - 1 capsule a day
• Fluconozole - 10 ml at night
• Metronidazole (through IV)
• Erythromycin (oral antibiotic)

Day 25 - Delayed Intensification

So today was the day. I got my hair shaved today. I got there, met some very important people from the Dominion Post, then I had to report to the registration desk where I got a bravery bead and a shampoo and conditioner sample from the hairdressers at the event :-). I got my "before" photo taken and then it was time! It actually didn't feel as overwhelming as I expected to sit there in front of the crowd getting all my hair shaved off, it was a bit windy and afterwards know why I usually prefer to have hair. And then after the "after" shot left to go back to the hospital.

So here is the photo you have all been waiting for - me with no hair. It was comforting to know (from my hairdresser) that I had no scars or bumps on my head.

So a big big thank you also to Hannetjie Main, Ouma Amanda and Eric, Craig, Catherine (who emailed me about her donation), Mark Beatty (one of Terence's Mo Bro's at his work), and Bhavesh Lala. Thank you so much for making it possible to participate in the Funrazor event and with your support I managed to raise approximately NZD$1,536.00. You have made such a huge difference and with your support it will be much easier for kids like Bianca to "walk" this road... It was a very uplifting experience!

Today was a much better day. Sure, Bianca still had a down moment or two when she got a bit of a high temperature and she wasn't very happy when they asked her to stand up for the X-ray today, but for most of it it felt as if she was almost back to her old self. She had a few giggle moments and also really enjoyed a play date in her room with Elijah and Stephen's little brother (sorry not sure how to spell his name). The three kids played with play doh and made some silly shapes. It felt so good to see Bianca interacting with some other kids.

Bianca is busy losing her hair again. This afternoon she played a game where she wanted me to put my hand on her head, then I need to look at my hand with this shocked expression as I notice the hair on my fingers. She just giggled so much.

So they have now worked out what type of bug Bianca is growing - it is a bacterial infection and not viral which means they can treat it with antibiotics. Sorry, although they told me what it is called, there is no way I am able to remember. I do know that it is not the same bug as last week. So now yet another antibiotic added to her list. Either way, we are still in for a 10 day admission, possibly longer if she is not well and there is a possibility that Monday chemo might be delayed. I really hope not, because delays would just drag this phase out longer and will probably push us over Christmas.

Sanna took the cutest photos of Caitlyn:

Medicines today:

• Tazocin (through IV)
• Gentamicin (through IV)
  
• Co-trimoxazole - 6.25 ml in the morning, 6.25 ml at night
  
• Omeprazole - 1 capsule a day
• Fluconozole - 10 ml at night
• Metronidazole (through IV)
• Erythromycin (oral antibiotic)

Day 24 - Delayed Intensification

Take a good look. This is me with hair... Tomorrow it will all be gone. Tomorrow I will be participating in the Funrazor event. Click here for my fundraising site.

A big thank you also to Brian & Lindy Wilson, Rialize Nel, Philippa, Lizette, a mystery person named "Best Wishes" and Mike Kmiec for your donations. I really appreciate your support. To everybody who supported me with their donations, I will do you proud tomorrow when I get my hair shaved off!

So today was okay. Bianca was actually a bit talkative, had a sense of humour from time to time and was interested in doing some things like playing with play doh. So that was pretty nice. She did have the odd "down" moment, but we had many more "happy" moments. It seems that her favourite show at the moment is Snow White. She's been watching it over and over. So I will be looking for a DVD or something for her.

We haven't received the final culture results back, but it appears as if it is the same as what she had last week and it seems as if we are in for a 10 day admission to administer IV antibiotics. Thank goodness for Sanna, because I would not have coped if I still had to take Caitlyn to the hospital with me - can you just imagine the struggle and I think that will be one "fight" I won't win... :-).

Caitlyn has this new thing where she pulls herself into a standing position against Bianca's plastic table and then she pushes it forward, "walk" a few steps, pushes the table, "walk" a few steps. I don't think she realises what she is doing, but it is so cool to watch!

Medicines today:

• Tazocin (through IV)
• Gentamicin (through IV)
  
• Co-trimoxazole - 6.25 ml in the morning, 6.25 ml at night
  
• Omeprazole - 1 capsule a day
• Fluconozole - 10 ml at night

Day 23 - Delayed intensification

First things first, thank you so very very much for all the donations I received to date. A big thank you also to Gordon & Laura Paynter, Tobie & Riki Deale, Thinus & Esmé Minnaar, Riedwaan & Nadia Jabaar, Deborah & John Orfanos, Noramonidan, Rayno & Anneke, Nickie-Jean & Tiki, Kipps Business Systems, Jill and Andrew, Alison Popovic, Alkis (and Anita) for your donations, you have made a huge difference! Thursday is getting close and if you still wish to sponsor me please click here. Every cent counts and goes towards helping children like Bianca fight cancer.

So today started with us going to the hospital for a blood test - a finger prick. Got there and I discussed that Bianca has been complaining of a sore tummy and has just generally not been herself. Doctor Anne decided that Bianca would need to be admitted. Did a urine test and a full blood count and the full blood count indicated an infection level of 200 or something like that. As far as I know it is supposed to be less than 3 or something. So definitely something "growing" there...

Bianca's saturation levels were a bit low and so she was first put on nasal prongs and then an oxygen mask. She also developed a bit of a high temperature. We then had to go to X-Ray. She was an absolute star and did everything she was told.

Went back to the ward and they moved us to a room closer to the nurses' station to make observation a little easier. Bianca wanted to see her X-Ray image and Doctor Amy managed to show her the image on the computer screen when we got to the nurses' station.

Back in the room and she was hooked up to a cardiac monitor and they took the oxygen away to see how she would cope. And when I left she was coping pretty well without the extra oxygen.

The highlight of today was definitely when she watched Snow White and giggled quite a bit. This was the first time I really saw her happy and smiling in quite a long time. It didn't last, but at least it was there...

Bianca will be admitted for at least 48 hours, we don't yet know exactly what kind of infection it is, but should know once the cultures come back. At least now we know why she has not been herself lately...

Bianca has come such a long way, in the beginning she would scream every time they had to take her blood pressure and she definitely did not enjoy X-Rays, but now it is just such a breeze for her. I am so impressed!

Medicines today:

• Tazocin (through IV)
• Gentamicin (through IV)
  
• Co-trimoxazole - 6.25 ml in the morning, 6.25 ml at night
  
• Omeprazole - 1 capsule a day
• Cefaclor - 12 ml twice today
• Fluconozole - 10 ml at night

Day 22 - Delayed Intensification

Funrazor is on Thursday, this coming Thursday. To all you overseas folks (and local folks) making donations are really simple - you can do it online via a secure site and directly into the Child Cancer Foundation's account. Every little bit counts and your donation would make a huge difference to children like Bianca. Of course you can always shave off your hair, but if that is not for you, then you can participate by sponsoring me to shave off all mine (and please pass on the message to all your friends, family and colleagues)!!! To sponsor me click here. A big thank you also to Sonya, Sue, Pauline and Grampa Sandy for their donations. The Child Cancer Foundation does so much for us as a family, I don't think we would have coped very well without having them on our side.

So of course Terence's work Christmas function is on Thursday evening - wonder what I could wear that goes well with a bald head or a bandanna??? :-).

This afternoon Bianca was sleeping in her room. I was in the play room with Caitlyn. All of a sudden I heard "Mommy!" "Mommy!" so I went to Bianca's room and then she said in a very unhappy voice "I don't need a deep bath!" "Pardon?" "I don't need a deep bath!". No idea where that came from and I suspect she was dreaming. Now how do you explain to a 4 year old that your dreams could sometimes feel real, but that they are not real.

Today wasn't a very good day. There were glimpses where Bianca was a little happy and even had a bit of a sense of humour. But for most of it, not really. She didn't want to have much to do with Caitlyn today, and that makes it a bit hard as Caitlyn wouldn't understand. So several times today Caitlyn would crawl to the couch Bianca was lying on, then stand up against the couch and try to touch Bianca, grab her clothes or pillow and making noise. Then Bianca would get a bit irritated (but at least not fighting) and I have to move Caitlyn somewhere else in the play room. Then Caitlyn would crawl to Bianca, and so on and so on.

She feels a bit warm and I'm keeping an eye on that temperature.

We didn't have chemo today and have this week off. This "break" would be so that Bianca's counts could recover before the next part of this phase (I think this is the reason for the break). Tomorrow we need to go to the hospital for a blood test

Chemo should "hopefully" go ahead as per schedule on Monday. At least it won't include Dexamethasone...

Caitlyn is really really busy. Sanna didn't think we had our own gym going at home, but she runs around quite a bit. Caitlyn's new game is to take something on her high chair tray or on the chair and to throw it on the floor. Then when we pick it up again, she throws it on the floor again and so on.

Medicines today:

• Omeprazole - 1 capsule a day
• Cefaclor - 12 ml, 3 times a day for four days, whereafter 6 ml at night every night
• Fluconozole - 10 ml at night
  

Day 21 - Delayed Intensification

Not much happening today. Bianca slept most of it. She watched Happy Feet and quite enjoyed it. There were a few moments today that Bianca seemed quite happy, but parts where she was quite clingy and insisted Terence sits next to her throughout the movie.

Thank goodness the Dexamethasone is finished today so hopefully soon Bianca will be her old energetic self again.

Today was exactly 6 months since Bianca was first admitted to hospital. 6 Months ago I was waiting for Terence and Bianca to return from the hospital, just to be told that she would have to be admitted. 6 Months ago, we were first told that Bianca had low red blood cells and low platelets, I remember doing a frantic search on the internet and the only thing that kept popping up was "leukemia" (of course we didn't know for sure on that day as they were still doing tests). I remember pacing up and down, up and down that whole day as I waited at home - I thought that time never went as slow before as on this day. Wow, it feels so long ago and looking back I realise just how far we have come, but also how long we still have ahead of us.

Medicines today:

• Dexamethasone - 3.5 tablets in the morning, 4 tablets at night
• Omeprazole - 1 capsule a day
• Cefaclor - 12 ml, 3 times a day for four days, whereafter 6 ml at night every night
• Fluconozole - 10 ml at nigh

Day 20 - Delayed Intensification

Firstly, a big thank you to Terence, Sharon, Sharlaine, Johan de Beer, Allison, Gail Meekings, Vanessa and Cyril Howell and Sue Mitchell for sponsoring me for Funrazor. You are making a big difference! Please continue to spread the word to all the people in your address book, we need as many people as possible to participate. Every little bit counts and will help the Child Cancer Foundation reach their goal. This will help children like Bianca and so many others in their fight against cancer. So next week, Thursday 6 December I will get all my hair shaved off and I need you to sponsor me. Click here to sponsor me.

Bianca really wants to go fishing and Sally from the Child Cancer Foundation gave us a number to call of one for their contacts and maybe we are able to give Bianca a fishing experience next weekend. In the meantime, Terence made Bianca a fishing rod and attached a magnet to it and so she was practicing (thank you Amanda for the suggestion!)

Bianca's counts were high enough so we managed to take her to the World Festival of Magic Show. This was hosted by Lions International and sponsored by a variety of organisations. We were kindly invited by the Child Cancer Foundation who included us when they allocated the available tickets. It was really cool and some of the illusions were really really good and mind-boggling. A BIG thank you to all involved for making this possible for us. Richard and his daughter and her friend came along too.

Unfortunately Bianca is still on Dexamethasone and as a result one moment she is excited about something, the next down in the dumps, sad and grumpy.

So this morning she was quite excited about the magic show, but when we got there, wasn't much in the mood and ended up sleeping through most of the time we were there. Shortly after the break she insisted we leave. I think she felt a bit overwhelmed with all the people and the loud noise. We saw Amy there (Amy was one of Bianca's best friends when she was still going to daycare), but it has been such a long time since Amy and Bianca saw each other that Bianca was completely withdrawn and shy when she saw Amy.

Today made me realise once again how very much things have changed for all of us. Right now I'm just so missing the old Bianca, all happy and giggling. I am hoping Bianca starts feeling much better soon, tomorrow is the last day of Dexamethasone for this phase, so I'm feeling pretty relieved.

Today was also Terence's shaving ceremony. Since Movember is now officially over, it was time for the mo to go. He can do this again next year, but until then, I'm not really a big fan of the mo...

Before...
During...After...
So this afternoon, Terence went to help out with fundraising for the Child Cancer Foundation. They collected money at the Wellington Phoenix vs LA Galaxy (featuring David Beckham) soccer game. Terence was offered a ticket and so he ended up watching the game as well. Official attendance figures were 31,853 - for New Zealand this is huge. LA Galaxy won 4-1. Although Terence doesn't know soccer that well, he had fun nonetheless. A BIG thank you to the person who gave Terence the ticket and thank you to Bob from Child Cancer Foundation who organised this for Terence.

Caitlyn is really busy, but she is at a fun stage now. She is quite good at pulling herself into a standing position now providing she has something to hold on to like the couch or Bianca's plastic table. This afternoon she practiced holding on to the plastic table and then let go of one hand. She is also crawling pretty fast nowadays. No more sitting still for us...

Medicines today:

• Dexamethasone - 3.5 tablets in the morning, 4 tablets at night
• Omeprazole - 1 capsule a day
• Cefaclor - 12 ml, 3 times a day for four days, whereafter 6 ml at night every night
• Fluconozole - 10 ml at night