Missing Doctor Anne

Thank you also to Gillian and Greg Tansley for their donation to the Funrazor initiative. All the generous donations really mean so much!

This morning we saw another paediatrician in Doctor Anne's absence. I really miss Doctor Anne.

This doctor is possibly a very good paediatrician, but I thought he was a bit business-like and didn't really try to interact much with Bianca. We were told that Bianca's platelets should be at 0.75 or above before we can continue with chemo and that they are currently sitting at around 0.68. He also told us that Bianca doesn't need to be on IV antibiotics anymore after the initial morning dose and then he left. No further explanation. I then tracked down Bianca's nurse to try and find out what it meant.

Basically we were allowed a visit home, but couldn't be discharged yet. I have no idea why we still have to stay in hospital. Bianca's platelets aren't too low - I mean then she would have had a transfusion. She wasn't admitted because of the platelets, she was admitted because of an infection which I assume they managed to sort out, because why else would they take away the antibiotics? She doesn't need to be on fluids and is eating and drinking fine. She is also not neutropenic. So she is not at a big risk of infections at the moment. As far as I am concerned, Bianca could have been discharged and then just returned as an outpatient for a blood test to determine if chemo would continue or not, but it seems we are not really included in this decision. Like I said, I really miss Doctor Anne - at least we would have had a more detailed explanation...

Tomorrow afternoon Bianca will have a play date with one of her friends. On Saturday we plan to attend the CCF Christmas party. And possibly on Monday we will continue with chemo. I still don't have a definite answer yet as to whether chemo will be in Wellington or in Christchurch. It is frustrating, because tomorrow is already Friday. They keep saying that they are in discussions to try and arrange it so that a paediatric oncologist does the treatment in Wellington, but until they confirm it for sure, I will keep "bugging" them for an answer.

Then I recently met a wonderful lady at the CCF named Juanita. She is from South Africa, but lived in several other countries including Hong Kong and has been living in New Zealand for a bit. They have two children - the one is four and the other five. She came to visit us in the hospital today and brought a really big present for Bianca. Wow, thank you so much, Juanita. You really made her day!

Medicines today:

• Tazocin (through IV)
• Omeprazole - 1 capsule a day
• Fluconozole - 10 ml at night
• Metronidazole (through IV)
• Erythromycin (oral antibiotic)
• Co-trimoxazole (three times a week, twice a day)

An interesting day

Thank you very much to Thishen Govender for the donation to the funrazor initiative. Your contribution will make a big difference.

Today was an interesting day.

Management decided that Doctor Anne needed to take some leave. After all she has been working pretty much non-stop since Doctor Liz left. So this morning we were seen by a Doctor Lear one of the normal paediatricians (as far as I know).

On Monday Bianca is possibly going to start Day 29 of the Delayed Intensification phase. On this day Bianca will need to go into theatre for a lumbar puncture as well as 2 other chemo treatments. So Monday will be a long long day. It looks likely that it will happen on Monday because right now we are waiting for her platelets to go up, they are going up, but aren't quite there yet.

So now with Doctor Anne on leave, we are then very likely to have to go to Christchurch for the theatre and the chemo treatments. So I'm still not sure about the logistics, how long we would then have to stay and so on. Usually Day 29 would just be done as a one day thing, so - in the morning, out the afternoon kind of thing. But if this has to happen in Christchurch I guess it will all depend on what time theatre will be and what time the chemo treatments will start. I'm not too pleased about it and I do hope they are able to work something out with the paediatric oncologist in Christchurch so that the treatment can happen in Wellington.

I am just so thankful that it is just a one off at this stage. The rest of Bianca's chemo can be administered by the oncology-trained nurses here in Wellington and as an outpatient so this will hopefully mean no further trips to Christchurch. There is nothing wrong with Christchurch hospital, but Bianca is so used to the nurses here in Wellington and nothing will be familiar in Christchurch. And so all of a sudden she will then have to deal with a whole bunch of strangers in a very strange environment.

I know they have a locum starting in January, but after Doctor Anne leaves this will once again take us down to just one doctor and then what happens when this person needs to take leave - will the Christchurch Paediatric Oncologists come here or will families be expected to travel to Christchurch? Please keep praying for those permanent Paediatric Oncologists!!!

I just feel so sorry for children like Elijah who will have to get his high dose methotrexate in Christchurch. Usually this specific treatment means an admission of approximately a week and they are now very likely to be split up as a family over Christmas.

Then, recently Bianca entered a drawing competition. The kids at Wellington Hospital had to draw a Christmas picture. There were a few age categories with a DVD player as a prize per category winner and then the overall winner would get their picture printed on the hospital Christmas cards. Bianca drew a Father Christmas and a Christmas tree with some presents underneath the tree. It was actually a pretty good picture and unfortunately didn't have my camera there on that day. But they chose Bianca as a winner in her category. She wasn't an overall winner, but today the portable DVD player arrived. Bianca was so pleased and tonight at the hospital sat there watching a show and using the remote to pause or play. It will come in so handy for those hospital stays. So thank you very much to Wellington Hospitals & Health Foundation! You really made Bianca's day and she felt so proud!

And then I just want to take this opportunity to tell everybody that we have the most wonderful, dedicated Au Pair staying with us. Sanna has been helping me out so much, she does way more than what we expect and I really don't know how I would have coped without her. I'm trying to convince her to clone herself before she has to leave next year... :-).

Medicines today:

• Tazocin (through IV)
• Gentamicin (through IV)
  
• Omeprazole - 1 capsule a day
• Fluconozole - 10 ml at night
• Metronidazole (through IV)
• Erythromycin (oral antibiotic)
• Co-trimoxazole (three times a week, twice a day)

A visit home

Thank you very much to Pacific Forum Line and Ann & Hal O'Rorke for their generous donations to the Funrazor Initiative. Wow, it really means a lot, so thank you very very much.

Bianca decided to make her own breakfast this morning.

So this morning we met Doctor Payal who is from the US and she is a registrar (I think) helping Doctor Anne out. She will be here for a little while before she will go back to the US. Of course we still need those Paediatric Oncologists for the oncology unit to work properly, but it is good that Doctor Anne has somebody in the meantime who could give her a hand. Doctor Payal was really nice and it was good that Bianca was in a good mood so she was really cooperative. Sometimes it takes her a long while to get used to new people and I felt happy that Doctor Payal was able to connect with Bianca straight-away.

No idea yet on when chemo will happen again. They won't start until they are 100% happy with Bianca's chest. She was coughing a bit this morning and I truly hope this is not the start of another viral infection. The last time she had a viral infection we were in hospital for 34 days, most in isolation and with Bianca on oxygen. So I really really hope this is nothing. I've become so neurotic. You hear a little bit of a cough and you start worrying.

Doctor Anne indicated that when Bianca was admitted her CRP levels were sitting at around 200 or 400 (a normal level is 3 and below as far as I know) and currently it is sitting at 69. So it is coming down, but still a bit high. CRP is the indicator that tells the doctors whether there is an infection or not.

Then Doctor Anne said that we were allowed a visit home in between antibiotics and of course there is no way that I will be sitting in that hospital room if we are allowed to go out. We have to be back at 16:00 for the next set of antibiotics and to stay the night. Of course we could have gone to the park or zoo or beach, but I thought it would be nice for Bianca to come home a bit and spend some time with Caitlyn. Whenever Bianca stays in hospital for a while, it always makes such a big difference to her mood just to get out a bit.

Caitlyn truly admires her big sister and she follows her around and she has this huge smile on her face whenever she sees Bianca. So the two girls had a bit of fun.

Sisters playing hide and seek.


And now it's back to the hospital and I'll spend the night with Bianca.

Medicines today:

• Tazocin (through IV)
• Gentamicin (through IV)
  
• Omeprazole - 1 capsule a day
• Fluconozole - 10 ml at night
• Metronidazole (through IV)
• Erythromycin (oral antibiotic)
• Co-trimoxazole (three times a week, twice a day)

A squishy, messy day

Thank you very much to John & Rose Newell and Paul Curtis for their generous donations to the Funrazor initiative. I really appreciate it!

Now, would you like the bad news or the good news first? Bad news first? Or rather I should say disappointing news first. Bianca wasn't well enough for Day 29 of the Delayed Intensification today and they will now look at her again on Wednesday to see if they will be able to continue then or still wait a bit. So I was pretty disappointed. The last thing we want at this stage is a delay and I really didn't want to have chemo happening over Christmas, but now it sort of looks as if it may happen. I was hoping for a quiet and uneventful Christmas.

Good news - Bianca was in a wonderful mood today. She was pretty much her old self, giggling and joking with the nurses. Even when she had to go for an X-ray this morning, she was smiling and pretty happy.

We played some Candy Land and she won the first few times. It was great fun and she would act out with her little "man" (she chose the red one) and will say things like "get out of my way yellow man" and "you can't catch me, yellow man" in a deepish voice. So it was great fun. She also drew lots of pictures. I then also decided that today (with Bianca being in such a wonderful mood) that it would be the perfect opportunity to do some paper maché. I've been wanting to make a piggy bank with Bianca and so Kate, the play specialist, kindly supplied some stuff and we started. It was quite messy, but great fun. Bianca started off by painting the "glue" with a paint brush and then she used her hands. Of course she then decided to play a trick on Jo and said to Jo "shake my hand". Jo played along and acted all shocked when she got some of the "glue" stuff on her hand and Bianca just burst out laughing. Of course then Kate, Keren, Danny and Serena all had to have a go as well. Just hearing her laugh like that was so good and so funny.

Tomorrow will be a week since Bianca was admitted to hospital this time round.

Tomorrow night Terence will be playing in a fun squash tournament (game 1 of 3 this week), so Sanna will be babysitting and I will spend the night at the hospital. So tonight after the hospital I had to quickly mow the lawns. It started getting quite long and I really did not want another phone call from the property manager. But at least it is done and should last for the next 2 weeks. I think my arms will be a bit sore tomorrow.

I guess that is what I find quite frustrating about these hospital stays - all the jobs in and around the house has to wait until I get back from hospital in the evenings and I say thank goodness for daylight savings time.

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 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