Urgent prayer request

Recently I found a new Facebook group and since then made two wonderful new friends - Suzanne and Wouter Grove.

Their little boy also named Wouter was diagnosed with cancer on the 24th of December, Christmas as well as his mom's birthday was on the 25th of December and what they first thought was neuroblastoma turned out to be rhabdomyosarcoma (he had a large tumour behind his liver). Since then they have been doing a number of tests and treatment was supposed to start Monday 5 January 2009, but paperwork through the holiday period was not coming through as it should and so they anxiously sit and wait and the new plan is that treatment will start on Tuesday the 6th. They have just completed a scan of the little boy's heart to make sure it works well. Bianca had this as well and it is a fairly routine procedure and gives them a baseline to work with before administering certain chemo drugs (or so I understand), unfortunately this revealed a tumour now in his heart as well which was not there before.

So this is a scary new development.

Please could you visit the Facebook site and keep them in your prayers and thoughts. (Click here to visit their group).

And Bianca is...

at camp. That's right. Right this very minute she is at Camp Quality. Terence has gone to drop her off this afternoon.

We went to clinic this morning for a blood test and to discuss Bianca's blood results and the possible start of chemo again. So we got there, got the blood test done and then we had to wait around an hour, so we took Caitlyn to the Family Playroom at the hospital. Last week the play specialist told me about this as a possible solution for Caitlyn when we have to go to clinic. It is pretty much drop in, let them know where we are at the hospital and then they are available from 8:30am to 12pm and again 1pm to 3:30pm. So today she just went for a really short little while. At first she cried a bit when she realised we were going to leave her, but I believe she settled really quickly and found her way around all the toys.

We saw Doctor Cole today one of the paediatric oncologists and I must say she was really nice. And guess what? Bianca's counts are all recovered!!! Thank you so much for all the prayers and positive thoughts, it really made the world of difference.

So platelets are up from 37 to 100 and neutrophils are up from 0.90 to 1.75 and haemoglobin is also at a pretty good level. So tonight Bianca starts chemo again at 50% and we'll review it again in 2 weeks when we are due at the hospital for our monthly appointment and if counts are still good then we will probably go up to 100% dose as Bianca typically copes well with her chemo increases. And best of all she was given permission to join in with camp. That really made Bianca's day and she checked 3 times just to make sure.

After our appointment we went to get Caitlyn who was happily playing. They have 2 swan plants with some chrysalisses (is that the right spelling?) and caterpillars and it was so cool! I'm determined to get some for the kids so now I just need to find out how and where and when. If you have any info on this, please let me know. I will bring Caitlyn again in 2 weeks' time when we are due for our monthly appointment and see how it goes.

And then I had to scramble to get everything packed and ready. I can't remember when last I had to work so fast with such little time and I sincerely hope we did not forget anything important. I did not expect her counts to look so good and certainly I did not expect to get permission for Bianca to join in with camp and so we were not as prepared as I should have been. But we are not complaining. I'm also pretty impressed with myself because we had to sort out some kind of alien / space dress-up for Bianca for the theme for this camp and so we quickly stopped at the $2 shop and made quite an impressive looking alien costume with a pink child-sized rain poncho, some red gloves that go all the way up her arms (and an extra pair to stick to the poncho), she has a pink sweat band that goes around her head and I drew a big eye on it for a third eye and she has this funny alice band with these funny things that could resemble ears. Bianca was really impressed with her outfit which we put together at the last minute and of course her being an alien, does mean that we can be pretty creative with her outfit.

Today was a fabulous, wonderful day and we feel so thankful for today. Thank you so much to Doctor Cole and Janine Harvey and all the Camp Quality Volunteers for making this day and week so special for Bianca, thank you so much!!!

There is hope...

For the past 3 days or so Bianca's been eating really well. It has been the first time in I-can't-even-remember that all 4 of us have actually eaten the exact same meal at the exact same time at the exact same table. And Bianca's been eating what I gave her, I didn't even have to keep nagging and begging just to give up after an hour. It has been amazing!

Now to most people this might not seem like a very big thing, but for so long now Bianca's appetite has just been really tricky and most of the time so selective that I have to typically make more than one kind of meal at a time. A long time ago we did meet with the dietician and it was sort of either we keep at it and push her to eat what we eat and if she chooses not to eat, well then so be it, or we could punish her for not eating, or we could just go with the flow and fit in with what she will eat and have our healthy ProNutro as a backup. So along with the dietician we decided to become flexible and fit in with her selective appetite and on particularly challenging days just give her pronutro (which does have a good range of vitamins, minerals and even iron and protein). We certainly did not want her to start hating food all because the chemo and steroids messed up her appetite.

So I'm guessing this is either a late onset of steroid-induced appetite or just that she has not been on oral chemo since 22 December. I'm almost feeling that this is as a result of no oral chemo which means that there certainly is hope when we finish our treatment in September.

Tomorrow morning we get back to reality as Terence is due back at work after the Christmas break and Bianca and I will be due at the hospital tomorrow morning for another blood test and meeting with the doctor and that means setting the alarm and waking up early. Tomorrow I will also have Caitlyn with me and I will have to see how that goes. I don't usually take her with me to these clinic appointments, but unfortunately this appointment is outside the time that Caitlyn would go to daycare every week.

We'll update again after our clinic appointment.

Quiet days at home

Today was sort of weird now that we suddenly have to keep Bianca away from other people again while we wait for her counts to recover. They are not as low as they were, I mean you can't really get lower than zero neutrophils (as far as I know), but they are not above 1 yet and that is technically still on the low side. So we stayed home, which felt weird as we always try and do stuff over weekends and for a while now we've had more of a "normal". Of course we could have probably taken her to the park or the beach, but with the way the weather is now, I am sure there would be just so many people there at the same time, which would increase the risk and if we can avoid another hospital admission at the moment, then that would be good. Especially since Terence is due back at work next week after this short little break now between Christmas and New Years, so it would be more challenging if we had another hospital stay.

We are quite keen to get to Monday when we will do another blood test, and with any luck Bianca's counts would have recovered. I am quite anxious to start oral chemo again seeing as Bianca's now been off oral chemo since 22 December 08. So hopefully Monday will be the day.

Last night was a fairly rough night for me as Caitlyn was pretty restless from midnight until around 5:30 when she decided she didn't want to sleep anymore. Caitlyn finally fell asleep again on the couch around 7:30 and then Terence got up to look after the girls and I went back to catch up on sleep. Tonight is his turn.

In some respects it doesn't feel real to me yet that the new year has arrived. It certainly does not feel any different just yet. I can't believe that school is starting again in around 4 weeks' time, then my little girl will officially be Year 1. And February means only 7 months left of treatment. It also means Caitlyn will turn 2. Just the other day I was watching little video clips of when Bianca turned 2 and wow, the difference is so huge to what she was like then and what she is like now!

So I expect we'll just have another quiet day at home tomorrow. But sometimes "quiet" can also be good!

We are home!!!

Bianca's levels are still on the low side and technically she's still considered on the neutropenic side so this weekend we won't be going to where there are crowds of other people. Monday we have another blood test and hopefully then her counts will be fully recovered and we can start oral chemo again.

But we're home today and that's all that counts.

I'm really tired tonight because even though the hospital stay really wasn't bad at all, we still have to deal with machines beeping at night which did wake me up a couple of times last night. But yes, certainly the stay was pretty good except two pretty bad incidents which left me fairly upset and which I will most definitely be taking further.

I hope you all had a really good start to 2009 and that this year will be an exciting and wonderful year for you all.

Daddy Daughter day out

It was such a lovely day this afternoon that I took Caitlyn to the beach at Brown's Bay. This is an old favourite of ours as it has both a play area for kiddies that looks kinda like a pirate ship and a nice expanse of sand with very gentle waves at the water's edge. There is usually lots of parking available, but today everyone else decided it was time to go to the beach too. I did manage to grab a parking as someone was leaving.


Caitlyn of course ran to the beach because we were so far from the park she couldn't see it. There was a huge area between the lifeguard flags and I shepherded her towards the middle as much as I could before dropping out bag out on the beach and hitting the water with her. The water was surprisingly warm, and I wished Lea and Bianca were there too so I could take Bianca out a bit deeper. Caitlyn of course would run to and fro from the sand to the water throwing shells and rocks into the waves. They were gentle enough not to knock her over - I did get her to sit down briefly but she had too much energy in her to keep still for long.


Caitlyn remembered this beach has a play area, and after half an hour or so she left the water shouting "Park! Park!". Pity, as the sea is much more fun for me. I didn't have footwear with me, and the park matting had been baking in the sun all day. so I had to hop from shadow to shadow trying to keep up with Caitlyn. The coolest part (temperature wise) of course was inside the pirate ship, but since it's designed for kiddies it's a bit low, and I bumped my head twice on the rafters. Sore head or sore feet? Tough choice.

Caitlyn couldn't throw her usual wobblies when it was time to leave as the ground was too hot for her to fling herself onto more than once. Also it was past her usual supper time, which I think also encouraged her to go without too much protest.

Pity we couldn't share this with Bianca and Lea, but there will be lots of time when Bianca is out of hospital.

Playing with glitter is good fun, right?

Mistake #1 - thinking that buying glitter would be a good idea.

Mistake #2 - laughing at Bianca's antics as she was sticking her hands and feet in it and pouring it out on the paper, making a big mess.

Result - an glittery mess to clean up with glitter on the floor, glitter on the bed, glitter in Bianca's hair, glitter on her clothes, glitter on her hands and on her feet...

Oh well, she had fun and that is all that matters and lucky it wasn't at home.

Yes, we are still here

And I just want to let you all know that whilst some may expect we are all strung out and stressed about being in hospital, we really are not. It is tiring, it would be really nice to all be at home, it does mean Terence and I have to keep in touch through Facebook, but...

We've learned a long long time ago that we just need to take one step at a time and one day at a time and so it doesn't bother us too much when we need to be in hospital. Spending more than 106 days in hospital as inpatient (since diagnosis) has certainly prepared us for this admission and whilst we do hope we get discharged soon, it isn't that bad being here.

We find the overall service at Starship very very good. We are not on the oncology ward because we needed an isolation room which they don't have available on the oncology ward, so despite the fact that these staff don't necessarily work with oncology kids and certainly have never had Bianca on this ward, ever, they really are doing a wonderful job.

Yes, the room is small, but it has its own bathroom with a shower and toilet (and that is always a plus in our books - we were once stuck in an isolation room probably for a good 2 or 3 weeks with no bathroom fascilities and Bianca could not leave the room and so we had to keep asking for a commode for her) and a bed for the parents, the ward kitchen is just opposite our room and they've even been giving us (the parents) some options for breakfast as well as a meal at dinner time. We are not used to that and certainly at Wellington they only supply to the children and not the parents / caregivers.

I can also take a short walk to the main part of the Auckland hospital where there is a Muffin Break and a Subway and so on and so for us, many more options than we've ever had at Wellington Hospital. So really, the stay has been fine.

Yes we do miss Kate (the play specialist at Wellington) who would make Bianca giggle with her silly antics, but the play specialist on this ward also seems really nice, although not as silly as Kate and she's been popping her head in every so often asking if Bianca needs something. To top it all I also believe they have a childcare centre here at the hospital where, if I had Caitlyn with me, I could leave her for a little bit if we were here for clinic or back inpatient. So if for some reason we are still in on Monday, then I might just consider it.

So we really don't mind being here and so far it has been okay (apart from an unpleasant experience I had with the one doctor today, but I'm not going to go into detail on the blog).

Last night Bianca and I waited for the new year. Bianca came to sit on my bed for a little bit and lucky there is sufficient space to move the IV pole around to my side of the room. We had a nice time looking out the window and the beautifully lit buildings and finally we managed to see some fireworks. Bianca really loved it. It didn't go on for too long and so then it was time for bed.

Yesterday Bianca only went to make poos twice and today twice so far (but it is not runny anymore, so much, much better!). Last night Bianca's temperature was normal the whole night and for most of today, but unfortunately is now back to 37.6 (and I understand that if she stays fever-free for 24 hours we might be lucky and be discharged, but until then we'll stay in hospital). Neutrophils have jumped up from 0.02 to 0.33 and whilst this is still neutropenic, it is definitely better than it was and a good sign. So a good start to 2009 and the first day of 2009 started bright and beautiful and sunny.

This morning Terence came for a visit with Caitlyn and at first Caitlyn came into the room saying "Bakie!" She was really happy to see Bianca, but she got bored fairly quickly and then knocked on the door saying "walk". So after we all ate lunch I took Caitlyn downstairs to the play area and she loved pressing the buttons for the lift and running around, going on the slide and so on. And then it was time for home for Terence and Caitlyn.

Tomorrow it is my turn at home and Terence's turn at Hotel Starship.