Word of the day

The best days are definitely the ones where you struggle to find something to write about. Today is one of those. Nothing much happening at the moment, Bianca seems fine and of course we are now just trying to catch up on doing things around the house.

Bianca is back on oral chemo every night and so far so good. It is around 50% of the full dose. Of course after the time in hospital and with the delay in chemo it feels quite strange trying to get back into our medicine routine. Bianca is still on high dose oral Acyclovir which she has to take 4 times a day and then after that will go on a lower dose, 4 times a day pretty much for the duration of her treatment (so all the way until she is done with treatment). And she will be completely off Dexamethasone (according to Bianca's discharge notes). There were talks that they were going to put her on Prednisone, but I'm not sure as yet. And of course she will get monthly IV Immunoglobulin transfusions.

So here is a new word for you: Panhypogammaglobulinemia (wow, I wonder how many years of study is spent learning the pronunciation of these big fancy medical words).

"Please spell Panhypogammaglobulinemia"
"Can you use it in a sentence?"
"Sure, Bianca was diagnosed with Panhypogammaglobulinemia"

Now that is a spelling bee tongue twister for you... And it is a real word too all you Scrabble fans out there (although you probably won't have enough letters or space on the board to make up this word).

I noticed this word on the most recent copy of Bianca's discharge notes. Basically it means her immunoglobulin levels were low and as a result she got an IVIG transfusion.

One thing we are going to try our hardest to plan is a birthday party for Bianca now sometime in May. Her actual birthday is in June, but we are scared that that is the time when people will start getting sick. We are not saying anything to Bianca as yet because things can change as quick as a flash in this game and it is better to keep it a surprise than to say something and then she gets disappointed if for some reason it can't happen. It will just be a really small party with only a few kids to minimise the risk. But on Friday when we have our appointment at the hospital, I'll be chatting to them to try and understand the likelihood of Bianca becoming neutropenic anytime soon, if they are confident the shingles are finally gone and so on. So it may or may not happen. Either way we will definitely have a family celebration on her actual birthday.

We have a few things happening in the near future, but more on that a little later...

A bitter-sweet weekend

The fun part was that Bianca was not neutropenic, so we managed to do a whole lot of fun stuff. Yesterday afternoon we all went to Staglands. It is quite a drive, but is a really nice peaceful place where you get to see different animals, and you are even able to feed them. Sanna and Sandrea came with us.

Of course Caitlyn became a bit frustrated because she wasn't really able to walk much and it isn't much fun being strapped in when it is so much better being able to walk. There is an enclosed area called "The Secret Garden" and we were able to let Caitlyn walk a little bit in this part.

And then we visited the one place we just cannot stay away from - the hospital. This time Kenepuru Hospital. Late in the afternoon Terence had really shallow, wheezy breathing and so we decided to go to Kenepuru in the evening. Of course they thought we were a bit nuts taking photos of the experience, but it's all part of our story at the end of the day. They suspect either a viral infection or possibly late onset asthma, so for the next little while Terence will be using an asthma pump several times a day and then from there the doctor can then diagnose the problem. I suspect it is asthma and it doesn't help that they are building around us, as it is practically impossible to avoid dust.

This morning Terence took Bianca and Sandrea to the movies. Bianca loves going to the "real movies", eating popcorn and ice cream. So they had great fun.

On the way back they stopped off at Queen Elizabeth Park where there were some things happening and there were some horses, an old tram and a bouncy castle.

Then tonight we had a final goodbye supper at home to say goodbye to Sanna. She will be flying tomorrow morning really early and so this was the very last chance to say goodbye. It feels really sad and words can never express just how much she means to us. Words can never express the difference she made in our lives. We were so blessed to have the chance to meet Sanna. Thank you Sanna for being there for us, through the ups and the downs, for brightening our days and for being a "like big sister" to my children. We wish you could stay and we hope you are able to visit us really soon!

And now introducing Sandrea who will be with us for the next month:

Tonight I heard a comment from somebody who mentioned that she finds it quite frustrating now during the school holidays with craft stuff lying all over and finding ways to entertain the kids. I didn't say anything, but I would give anything to have craft stuff lying all over at home instead of on a hospital bed, and wondering what I could do with my kids during school holidays, instead of wondering how to entertain my kid when she is hooked to an IV line and in isolation. If there is anything this journey has taught me it is that you should never take for granted what you have.

When you wonder what to do with your kids during school holidays, it means they are able to go to school, when they have stuff lying all over, it means that they are at home able to enjoy those things. Certainly before Bianca became sick, life was pretty hectic. We were always rushing from one thing to another, one moment to another.

This journey has taught us to slow down and not get frustrated when we don't always manage the house work, the tidying and cleaning as well as we can. This journey has taught us to enjoy every moment we have with our children, because the only certainty in this game is "now". After all, "yesterday is gone and will never be back, tomorrow may never arrive, but today is a gift, that's why they call it the present".

And Bianca, my brave and courageous little girl, whilst we don't quite know when, the opportunity will come that you too will be able to go to school, have friends, spend carefree moments at home during school holidays. And I won't complain if you did make a mess, because I would find comfort that at least you would be home and not stuck in a lonely, isolated hospital room.

Hello and goodbye

This morning Terence will be camera hunting. Our camera decided enough was enough and it pretty much stopped working properly. Can't say I blame it, we've had it since 2004 when we came to New Zealand and I have to say it served us well.

Yesterday (Friday) was a public holiday and we took advantage that we were all home. It was also our very last day with Sanna before Sandrea's arrival so we decided to do our own little farewell with Sanna. It all worked out nicely as Bianca isn't neutropenic at the moment. The past week I put together a little clip of Sanna's time in New Zealand and so yesterday we went to a restaurant for lunch, played her the little clip and gave her some special little things to remind her of us. Oh boy are we going to miss her just so much!!! Sanna is flying very early Monday morning.

Afterwards we had to quickly go to the shops and there was a bouncy castle at the shopping centre. There was only 1 other girl jumping, so we thought it would be okay for Bianca to join too. She had so much fun playing with this girl. She was just giggling the whole time. Not sure who this little girl was, but thank you so much for making my little girl's day!

Sandrea arrived late yesterday afternoon. She is very nice. So this weekend we are just spending the time together to give the children a chance to get used to the newest member of our family. Sandrea is from Malaysia and she can speak Malay, Mandarin and of course English. She is 26 years old and is currently backpacking through New Zealand. She will be with us roughly for a month. She will then set off for 5 weeks to Australia. So any interesting places in Australia or worthwhile cities to visit, please let us know!

So apart from just taking it easy, I have to catch up on emails, other blogs and journals, unpack our things from the hospital, do washing, ironing and so on. And of course the situation at Wellington Hospital is sitting in the back of my mind. It seems that not only are we constantly fighting to get our kids better, we also have to constantly fight to have an acceptable service here in Wellington. I know we have our own oncologists on the way to start in October, but that is still 6 months away. And 6 months is such a long long time when things can change and happen in a matter of minutes. And it doesn't feel very safe knowing that Christchurch is effectively in charge of us and they don't seem to care too much about us here in Wellington.

Finally discharged

Discharged!!! Bianca was discharged today. It feels so very good to be home again - all of us. That was the absolute highlight of my day today!

While we waited to be discharged Bianca and I made a ghost puppet. She even helped with the sewing a bit.

And then Bianca played with a fairy book where you stick fairy stickers onto a background and you can sort of make a story out of it. She really liked it and we imagined what it would be like to ride on a snail or fly a dragonfly or have a unicorn (like some of the stickers).
Of course as for the rest of the day, well the only word that comes to mind is "FRUSTRATING". So suddenly we were informed that we will now be seen on a Monday and that we are now effectively a Monday chemo (apart from the daily chemo). Okay, that's fine. And so by the way, the oncologists in Christchurch don't feel that they should be seeing kids on maintenance so much anymore and that it will be perfectly fine for us to be seen by the one paediatrician whom they have now pretty much put in charge of oncology kids. So now the oncologists will come through every so often and they will only see the kids they feel should be seen by them and probably no more than 6 at a time. Oh goodie! So even though Bianca has had an unknown viral infection, several tummy bugs, kidney stones, a bronchospasm that required immediate assistance, a severe reaction to her chemo, pneumonia, several neutropenic days, developed shingles, had low immunoglobulin levels, spent more than 100 days as an inpatient in hospital and recently (on maintenance) became neutropenic; they don't believe that we are important enough to be seen by an oncologist. And it's not like we only have a few months left on treatment, we have another 16 months at least left before we will reach the final date of treatment. So for the next 6 months until we get our own oncologists, this is the care my child will be receiving.

Then to top it all off when I asked for Bianca's chemo script (she is starting again on oral chemo from tonight), our nurses told us that it was now decided that all chemo scripts will be done in Christchurch and faxed through to Wellington, then this will be given to the patient or faxed to our pharmacy whereafter we will be able to collect it. Okay, I understand why they are doing it. But now they are saying they only do scripts between 1pm and 2pm. So there goes my plan to collect the medicines before discharge. So when 2pm came along, no script. Not even after 4 messages were left for Christchurch to get an update on when the script will come through. When somebody says that something will be done between 1pm and 2pm then you sort of expect that by 2pm latest that thing will be done. Not Christchurch, they eventually faxed the script by 4pm and as a result the pharmacy was not able to fill our whole prescription and this will now mean a second trip all the way to the city to get the rest of our script.

And all I can say is thank you so much Marg (who went way beyond the call of duty), Jo, Chris and all the others for being there for us, trying to help us sort it out, listening to our frustrations. You are all fantastic!

But at least we are home. I hope this will last for a little while at least.

This weekend we will very much have mixed emotions. Extremely sad to say goodbye to Sanna. She is on her way back to Sweden. But at the same time we are quite excited to meet Sandrea who is from Malaysia and who will help us out for the next month looking after Bianca and Caitlyn. We will introduce her once she has arrived!

Looking for a friend

Today Sanna took the girls to the park when Bianca was able to leave after her IV meds. Sanna said that Bianca was a bit tired and at one point she was sitting at the top of the slide, just sitting.

Sanna: "what's wrong?"
Bianca went down to Sanna.
Bianca: "I was waiting for somebody to sit next to me"
Sanna: "but Caitlyn is too little"
Bianca: "no not you or Caitlyn, I was looking for a friend"

This is the heartbreaking part of this journey. She hasn't been able to have friends for such a long time. The past 10 months she has maybe only had 3 play dates or so and each time there is always some reason why she cannot be with other children. She is only 4 and her circle of friends consists of her Daddy, Mommy, Caitlyn and Sanna. That's when you realise how very unfair this journey is. How cruel and callous cancer can be.

But we are blessed in so many ways, regardless the sacrifices. We are blessed because we have each other, because we are able to find reasons to laugh and smile and because we have learned to slow down and spend as much time together as we can. Even though our journey has been very hard with lots of things happening, Bianca still copes pretty well with her treatment. We are blessed because in our own small way we are able to inspire others, create awareness and try and make a difference.

I can't wait for Friday. That is when we will possibly be discharged. It will be so good when we are all together in the same house again. Sanna is also flying back to Sweden on Monday morning, so it will be really nice if Bianca can be at home this weekend to be able to spend the last few days with Sanna. We will miss Sanna so very much. She absolutely feels like one of the family. She was a blessing sent to us when we needed her the most. Our Mary Poppins (except as far as I know she doesn't really jump through chalk paintings or have tea parties on the roof as far as I know).

This week is absolutely dragging on and I can sum it up as tiring, exhausting and frustrating.

Tiring because Caitlyn hasn't slept through the night this week. We suspect either teething or growth spurt.

Exhausting because the last few weeks we've juggled spending time at the hospital, going home for visits, trying to fit in work and all over again.

Frustrating because now that our locum has left it feels as if we are back to square 1. Until our oncologists arrive in 6 months' time we will have ordinary paediatricians with limited oncology experience looking after our children and decisions will be made by the specialists in Christchurch via teleconference and all we can hope is that they will notice every little sign and hint to be able to communicate this to the specialist in Christchurch. And then once a week a specialist from Christchurch will come through and have only that day to catch up with new and existing patients, staff and management, go through notes and whatever.

So pretty much 1 step forward, 10 steps back...

Doing crafts in isolation

Last night I had a pretty rough night with Caitlyn. I think Caitlyn is going through a bit of a growth spurt so she didn't sleep through the night last night. But anyway, like they say "I will survive".

When I arrived at the hospital Bianca was busy getting her Immunoglobulin infusion which took around 2.5 hours to run.

Megan the play specialist spent some time with Bianca. They did some crafts and Bianca had lots of fun.

Later in the day Kate, the other play specialist, also popped in for a visit. Bianca absolutely loves it when the play specialists come in for a visit.

Over the weekend Bianca and I made some hand puppets. This is one of the activity ideas Bianca got from The Correspondence School and she absolutely loved it. We had great fun and then afterwards had fun playing with them.

Other than that, just counting the days until Friday when we will hopefully be discharged. And hopefully this time we get to spend some time at home.

A very busy routine

We are now in a pretty good routine. Terence and Bianca sleep at the hospital and then Bianca stays at the hospital in the morning (at this stage mostly with Terence, but some mornings with me) and then after her 1pm dose of IV meds, Sanna comes through to get Bianca from the hospital and takes her home. Then around 7pm at night Terence and Bianca go back to the hospital to spend the night. It is a busy routine, but this way both Terence and I get some work in and Bianca has a chance to spend some time at home with Caitlyn.

Bianca will be in hospital until this coming Friday. They want her to complete the course of the antibiotics so that she does not build resistance against the meds. Then she will be discharged on oral Aciclovir 4 or 5 times a day, initially on a higher dose, and then later on a lower dose possibly for the duration of her cancer treatment. In addition there are talks that they will put her on prednisone instead of dexamethasone. I haven't got details on this as yet, so will just wait and see.

Bianca's immunoglobulin levels came back a little low and Terence said she is due to get an infusion either tonight or tomorrow. There is a possibility that they might make this a monthly thing, so once again just a matter of wait and see. Each batch of IVIg (Intravenous Infusion of Immunoglobulins) is made up of human plasma. So generally people can choose to be just usual red blood cell donors, or people can choose to donate platelets and also plasma. To date Bianca has had around 25 blood product transfusions most of which were red blood cells, but also platelets and now it seems plasma. If you ever need a reason why you should consider donating blood, platelets or plasma, just look at Bianca and think that you might possibly be helping to save her life or those of other children just like Bianca. Please become a blood donor.

There are also some discussion that maybe Bianca will start her oral chemo again from this Friday. We feel quite out of our medicine routine at the moment and hopefully we will be able to get back into it pretty soon.

Then we got a really nice surprise. A lady by the name of Hannah put together a beautiful montage of Bianca. Thank you so much. It is really special.

The magic number is 100

Tonight marks the 100th night spent as inpatient at Wellington Hospital. Fair enough, not consecutive days spent in hospital, but of the 321 days since Bianca was first admitted way back 2 June 2007 and the 318 days since diagnosis (5 June 2007), Bianca stayed 100 days in hospital with various admissions. Wow, that is mind-boggling. 100 days where Bianca wasn't able to sleep in her room and in her bed. 100 days that as a family we were split up with one of us staying at the hospital with Bianca and the other at home with Caitlyn. Of these 100 days Bianca spent around 69 days in isolation.

Today was a frustrating day. We were meant to meet with the Christchurch doctor who comes up once a week at around 10am, he was quite busy, but of course nobody let us know this (and we found out only around 10:30 am from the registrar that he was running late, but with no feedback on how long he would be) and eventually only arrived around 12. I was disappointed because by then Terence had to be at work for a meeting and Terence really wanted to be in this meeting. But anyway, that's how it goes I guess when this doctor really only has a day to catch up with all his patients, management at the hospital, do all his theatre cases and still fly back.

We were also told that our locum won't be with us anymore from Monday. I'm really sad because we really liked him, he was great with Bianca and we felt comfortable with him.

So it almost feels as if we are back to square 1, it doesn't feel very comforting knowing that our specialists are located in Christchurch (even though they say they are only a telephone call away), but if something happened late at night or during a weekend, we will need to rely on the registrar and relevant paediatrician on call to interpret all possible signs and discuss this telephonically with somebody so that a decision can be made. This journey has taught us that things don't always happen according to the book. More often than not there will be something subtle indicating that something might not be quite right. I mean we've even had a situation once before where Bianca complained of a sore tummy and it turned out to be an infection. And she presented a mystery rash once, had an unexplained viral infection, severe reaction to one of her treatments as well as a bronchospasm that required immediate assistance and let's not forget about the kidney stones and shingles.

The comforting thing is that at least by October we will have our 2 paediatric oncologists. I just wish October comes around really fast!

So when the doctor eventually arrived by 12pm he discussed that the shingles most likely reacted to the Dex as the Dex also attacks the Lymphocytes which is needed to fight viruses. So they took some blood to check Bianca's immunoglobin levels as they might possibly be a little bit low or border-line. If that is the case then Bianca might have to get monthly 1 - 2 hour infusions to bring her immunoglobin levels back up to help fight things like shingles.

We are likely to still be in isolation this weekend still on high dose IV Aciclovir and once Bianca is discharged she will have a week on oral Aciclovir (probably around 5 times a day) before she will start with some of her treatment (but not the Dex initially). And we are likely to continue with the oral Aciclovir going forward - oh goodie, another ongoing medicine added!

I also asked about starting school and the doctor's opinion, definitely not until winter and spring are over, so we can possibly consider the last term of this year. I understand the reasoning, but it is disappointing as Bianca is just so ready and I really want her to start interacting with other kids for a change. Apart from seeing some of the other children at the hospital, these past 10 months Bianca has maybe only had 3 play dates or so and 2 visits to her old day care center. And the way things are going now, I am doubtful we would be able to do a birthday party for Bianca when she turns 5.

But here is my little girl, 4 years old, full of smiles, finding a reason to have as much fun as possible and not once has she ever asked "why me?" - even after walking this road the past 321 days and spending 100 days in hospital of which around 69 days in isolation. So we keep walking every single day, one day at a time and every single day that we get through is one day closer to that last day of treatment (11 September 2009).

Back in isolation

Guess what! We are back in Ward 19 Isolation. We had all of 1 day completely away from the hospital. It appears that the shingles reacted to the Methotrexate Bianca got on Tuesday or the Dexamethasone she got for the past two days or maybe to both. We don't know for sure, but for now the decision is that Bianca is still off all oral chemo and possibly completely off the Dexamethasone. So she will be getting high dose IV Aciclovir for the time being. Today at least Bianca was able to come home for a bit before she is due back at the hospital tonight, I hope the visits will continue because it does mean the world to the girls to be able to be together.

Tomorrow we'll meet with the doctors from Christchurch as they come to Wellington once a week and we'll be asking some questions to try and understand how this will affect our treatment plan.

So here we go again...

Never a dull moment

Today was Day 2 of the Dexamethasone for this month, and we felt it, or rather Sanna did for most of today.

Bianca was quite moody and she kept asking for things and then changing her mind and then saying to Sanna "I was just joking". They also made cupcakes and she ate about 6 or 7 of them. Usually she doesn't like sweet things when she is on the Dex, but this time it seems to be the thing.

Tonight she was very active, running around playing with her dad. We noticed she keeps getting out of breath a bit and seems to be a bit pale so we are wondering if she will need a transfusion at some point. It also seems as if the shingles want to flare up again. I'm sincerely hoping we are just neurotic and wrong.

So we are taking Bianca off the Dex - doctor's orders and tomorrow morning we'll have to take her in to the isolation side just so they can have a look at her and make sure things are fine.

So here we were hoping to have a few days away from the hospital, but now we're back tomorrow and of course our appointment on Friday.

Never a dull moment!!!

Back playing the waiting game

Today made me realise once again how very up and down this journey is. Yesterday we were on top of the world and today Bianca very much had a grumpy day, so here we go back down to earth. She woke up grumpy, hated having her port accessed and was pretty down in the dumps for most of the day.

We had to leave at 7am this morning as we needed to be at the hospital by 8am. Bianca wasn't allowed breakfast as she needed to go into theatre for a lumbar puncture and chemo into her spine. When I met her in recovery she asked me "can I have breakfast when I get home please".

We went back up to the ward and it was time for Bianca's Vincristine. They changed the way they administer it. It used to be just a push into Bianca's port, but now it is a 20 minute IV infusion into Bianca's port.

We are still not on oral chemo as Bianca's counts are still low, but we started Dexamethasone (steroid) today. And then of course we got Methotrexate (chemo) into Bianca's spine and Vincristine (chemo) into her port via IV.

Now we are waiting to see if Bianca's shingles get activated again. She is still on oral Aciclovir (4 times a day), but the virus that causes shingles and chickenpox doesn't like chemo or dexamethasone and it is quite a stubborn virus so it may very well disrupt Bianca's treatment again. I hope not, because it is really important that Bianca manages to stick to her treatment schedule.

When Bianca got chickenpox at around 6 months and was barely affected, I remember feeling relieved that she was done with chickenpox and that we would never have to worry about it again, little did I know then that once you got the virus, it stays with you. Like our doctor said "Herpes stays with you for life". So here we are playing the waiting game...

When we got home Bianca felt a bit happier and tonight we are just so pleased that we are all together at home. We have a few days away from the hospital before needing to be back on Friday for a chat with Doctor Sullivan and a blood test.

What a fantastic day!!!

Today was a fantastic day!!!

Bianca was discharged. Yeah!!! It is so good that we are once again all back home, under the same roof. Of course we will probably now have oral Aciclovir 4 times a day pretty much every day going forward. But one more medicine won't make much of a difference to our schedule, as long as it means we can finally be rid of the shingles then that is just perfect!

We have a new au pair - or two rather. There is a lady who can start end of April, but can only stay a short little while and then we have another girl who cannot start end of April, but can stay longer. So this girl will start with us at the end of May. They both sound really nice and just perfect for our family. More details and introductions to follow...

Of course we will miss Sanna so very much. And it is like having a family member who will be moving to another country. I am sure Sanna's mum will be so thrilled to have her daughter back home in Sweden, but it will be very hard to see Sanna go.

So all in all, we have childcare sorted and I get to continue working. I really like my job.

Today was a fantastic day!

It feels so great when things just fall into place. Sometimes it feels hard coming up with solutions because there are just so many "what ifs" and you have to have solutions for the solutions "just in case".

Tomorrow morning will be a busy day. Bianca is scheduled for theatre. It is not a usual theatre day, but we have to catch up to bring us back to our schedule. So we'll leave the house at around 7am and Bianca won't have anything to eat or drink until after theatre. She will then get a lumbar puncture with chemo in her spine and also Vincristine through her port.

Visits home

This weekend turned out to be a good weekend even though we are still in hospital and in isolation. Bianca managed to come home between IV Aciclovir doses. So that has been exciting for Bianca. It was just so cool to see the girls have a great time.

On Saturday afternoon we all went to the beach and the girls just had the best time ever. Caitlyn wasn't too keen on the water, but she loved walking up and down the beach. I was quite surprised as I expected it to be a bit cold, but it was really nice and the water wasn't too cold.


Our footprints: Terence, Lea, Bianca and Caitlyn...

And then in between, Sanna and I have been watching Gilmore Girls Season 7. Thank you very much Steve!

This morning we were hoping to come home in the morning, but the on-call paediatrician, whom we have never met before and doesn't really have any oncology experience that I know of, arrived at our room at around 11:15am or 11:20am, so by that time it was just too late to still leave for home and be back by 1pm. Bianca was so disappointed and of course we did plan to come home in the morning, but eventually we managed to leave around 2:15pm after Bianca's IV Aciclovir. It was a bit frustrating because the only thing that this doctor pretty much did was to tell us Bianca's neutrophil level and she didn't really examine her or anything. So I am not sure why she insisted we stay until she saw us. But tomorrow is Monday and we should see our own doctors again. That will be much better and with any luck we will be discharged tomorrow. Here's hoping...

Tomorrow we have been in hospital 14 days for this admission and to date since diagnosis have had probably around 98 days in total in hospital as an inpatient (fair enough not consecutive days in hospital, but still very long).

Then on Friday with any luck, we can continue with our chemo. That is if Bianca's levels go up sufficiently. Right now neutrophils sitting at 0.31.

Exciting surprises

Oh wow, big surprises!

A big thank you to Johan, Marlize, Hannes and Elmarie for the very special parcel you sent. You made our day and you should have seen Caitlyn's curiosity when I brought the box into the lounge. And Bianca's face lit up when I took her presents to the hospital. Thank you so much.

Thank you also to "a Grandmother from Napier". Bianca loves the knitted doll outfit you sent. This is perfect now that winter is coming! Bianca was so excited when the nurse brought it to her yesterday.

And then the nurses brought another big surprise for Bianca this morning. Thank you so much to Hannah and family (including Rebekah and Kate) for the beautiful Pony School play set you sent. Bianca really loves ponies, she loves pink and she can't wait until she is able to start school. This is just perfect!

Thank you! You really made Bianca's day and really brightened her stay in hospital!

We feel so blessed to have so many people following our story and keeping us in their prayers and thoughts. Without your support, this journey would have been incredibly hard. So thank you!

Bianca is still in hospital. But yesterday and today she was able to come home for a visit in the afternoon. Bianca and Caitlyn had the best time ever playing around. Even though it is a bit of a distance to drive, it is so worthwhile just seeing the two girls having lots of fun together.

We are hopeful Bianca will be discharged this weekend, although we suspect that she may have to stay until sometime next week. Anyway, we will know better tomorrow. Bianca is definitely not getting chemo tomorrow, but the plan is next Friday.

I understand Bianca's counts are still on the low side and there are talks that she may have to get G-CSF injections. I'm praying very hard that the counts come up by themselves, quickly! Bianca would absolutely hate getting these.

But at the end of the day, we will do what we need to do and we will get through it, one step at a time!

A happier day

I spent the day with Bianca at hospital and today was definitely a happier day for Bianca. She had quite a bit of fun playing with some of the toys and activities she has in the room and the highlight was when she got a visit from Kate from CCF and then also "Playing" Kate (the play specialist) and of course it is just as exciting when Megan (the other play specialist) pop in as well. Bianca watched some videos and later in the day she came with me for a drive in the car to get Terence from work.

On the way back from Terence's work, we were discussing that I will be driving home and then Bianca said "I'm going home too" and Terence said, "no, you are going back to the hospital" and she then replied "but the hospital is my home".

The shingles finally seem to be disappearing. She'll still be in isolation until at least Friday, but her counts are starting to come up, so that is great news! Thank goodness! There are talks that possibly this Friday (but most likely next Friday) we'll continue with our chemo again. That will then be a theatre day for us, so quite a long day, but with any luck, just an outpatient procedure and not still as an inpatient.

It's been pretty okay staying in hospital even though it was isolation and even though it is tough not having our family together under one roof, but Bianca quite enjoys spending time there and I must say we have such a great team of professional, competent and fun nurses that we work with. After 10 months of walking this journey with them, it feels as if they have become our family. We also really like the locum (Doctor Ingram) and Bianca gets along really well with him. I am so pleased that they managed to hire two oncologists who will join us a bit later this year. Then hopefully Wellington patients won't have to travel to other centres anymore. I remember when we traveled to Christchurch - that was the most exhausting experience and Bianca found it quite traumatic for various reasons. We are just so pleased that we won't really have to travel anymore. After having been to Christchurch and also having been with Wellington, I definitely prefer being at Wellington. Christchurch was okay, but Wellington is our home, the place that we feel comfortable at and the place where we feel Bianca is happy, love the staff and all in all we feel that Bianca is getting the best possible care she can get right now. Right now we wouldn't want to be anywhere else and a big big thank you to all the wonderful staff we deal with on such a regular basis. You are doing an excellent job!

I noticed that Bianca's flowers are growing really well and even her sunflowers are starting to bloom. Bianca will be so excited and I can't wait for her to see her sunflowers!

Bianca not feeling 100% today

This morning Bianca was definitely different to yesterday. She was quieter and at one point insisted she was cold. She also had quite a long sleep which is unusual for her. She had a slight temperature, nothing too serious for the time being, but they are keeping an eye on it in the meantime.

No news yet on when we will be discharged. They had a conference call with the oncologists from Christchurch and the decision was to increase the IV Aciclovir. The virus in her system is probably the reason for her low levels at the moment, so I really hope they are able to kick the stupid shingles in the backside and get rid of it once and for all.

I was with Bianca this morning, and then at work this afternoon. Tomorrow I will spend with Bianca the whole day. I'm hoping she will feel a bit better.

The past week has been pretty exhausting for us, and I'd just be so pleased if we could be discharged soon!

Still in isolation

We're still in. Tomorrow marks a week for this admission - in isolation. I stayed the night last night and must say that it was a pretty uncomfortable sleep. I chose the camp bed instead of sleeping on a mattress on the floor, and in hindsight - I should've just gone for the mattress on the floor.

At this stage Bianca is on IV meds until around 1:30pm each day and then they hook her off and yesterday and today we managed to leave the room until around 4:00pm, when we had to be back. We couldn't do much because Bianca is very much still neutropenic, so we have to avoid people and places where there are other people. It was raining, so not much choice in outdoor places to go to and we live a bit too far to just go home and back in the time we were allowed to leave. So we ended up just driving around. At least Bianca got to see a bit more than just the hospital room.

So tomorrow morning I will spend the morning there, and then Terence will go to work. Then in the afternoon he will take over from me and I will go off to work and so on.

Bianca's neutrophils are sitting at 0.10, so quite low and until they recover sufficiently - no chemo! At least her liver function is much better.

So we'll see what this week brings. I'm hoping we get discharged soon. It would be great if we could just have some time where nothing much happens - ordinary days doing ordinary type of things. I realised that this whole term Bianca probably only managed 3 ballet lessons. I feel sorry about this, because she really likes going to ballet, but for now we probably won't enrol her for next term until we know for certain that things are a bit more settled. Of course it does make me wonder how things will work with school, I really wouldn't want her to miss too many classes.

But I'm sure things will work out the way they are meant to.

What a busy day!

So this week just keeps going and going. Last night Sanna had the tummy bug Caitlyn had earlier in the week, so this morning Caitlyn and I set off with extra clothes, special orders from Bianca, stuff for Caitlyn and so on. I spent the day with both girls in an isolation room. Caitlyn thought it was great and especially loved looking at people (through the little window at the bottom of the door) walking past and then trying to get their attention. It was so cute.

It was a bit exhausting, but not too bad. Of course it didn't do much good for her nap time this morning and she ended up way over tired and only managed 30 minutes before waking up.

I guess if we do end up not finding an au pair, then this was pretty good practice.

But Terence really needed to spend some time at work. He managed to do work from the hospital, but there were some meetings he just couldn't miss.

So tomorrow after Caitlyn's nap we will go and visit Daddy and Bianca and then I will stay over at the hospital.

There is no chance Bianca will be discharged this weekend, the shingles are taking slightly longer to crust over than they were hoping. They have also added two preventative medicines - an antibiotic and anti-fungal. This basically means that Bianca is hooked up to her IV line for most of the day. When I got there this morning she asked her nurse if she could be hooked off. She so badly wanted to play with Caitlyn (and having an IV line would just be too risky with a 1 year old around who would probably end up pulling it and trying to chew on it). But unfortunately she had to wait until around 2pm before being hooked off the IV and then had about 1.5 hours playing with Caitlyn. The two girls just miss each other so much when they are split up. So it was really good to see them playing together.

So here's hoping we would be discharged early next week (maybe Monday or Tuesday?), here's hoping...

Great news in the paper today!

Good news everybody! They hired two Paediatric Oncologists for Wellington Children's hospital! I am so pleased about it. These Oncologists are from Germany and due to start in October. So still a while, but at least we are moving in the right direction! This is such good news. I also understand that when the new hospital building opens, the Children's Hospital will move to one of the other existing buildings which should provide more space. You can read the article here.

Bianca was also in today's Dominion Post.

Now after this week, I feel a bit tired. It's been a couple of rough nights with Caitlyn. But hopefully she will now be fine. She does seem fine during the day.

Tomorrow I will spend the day with Bianca at the hospital. Terence will still sleep there, so I am excited to get to see Bianca for a bit too. I am hoping that she gets discharged this weekend. I think Caitlyn is also missing her big sister a lot and I know Bianca is missing Caitlyn too. Bianca even made Caitlyn a picture because Caitlyn wasn't feeling great earlier this week. It is hard when the two girls can't see each other every day, but that's life and we'll get through it - one little step at a time.

As they say, the only way to eat an elephant is one small bite at a time.

It turned out to be a blessing in disguise

The first night in hospital was a late night for Terence and Bianca. Unfortunately they were quite busy and by the time they accessed Bianca's port, the numbing cream started wearing off and so the skin wasn't quite numb when they put the needle in and she cried, but not once did she try to push the nurse's hand away - she was so brave!

Yesterday afternoon I took over from Terence around 2pm as Terence had to go to work for a meeting. Bianca and I had a good time spending together. Bianca looks pretty happy and she looks better than the weekend. They also say that her liver function is definitely not getting worse, so that is good. She is still neutropenic and they won't start chemo until Bianca's counts come up. Bianca's haemoglobin was low and so they had to take a blood sample from her port to cross-match and then later in the afternoon Bianca got a blood transfusion. To date she has had around 24 or 25 blood product transfusions. So a big big thank you to all blood donors out there.

Have you ever wondered what 4 hours look like? A blood transfusion (red blood cells) for Bianca takes 4 hours to run through.

They regularly monitor Bianca before and during the transfusion.

Bianca played with play doh during the blood transfusion.

Today I knew that this admission was a blessing in disguise. Last night Caitlyn had a bit of a tummy bug and around 1am this morning I got up and Caitlyn had 4 vomitting episodes. Not the most pleasant thing that time of the morning. Thereafter I got up for Caitlyn again at 2am, 3am and again 4am. So good thing Bianca is in hospital because the last thing I want is for her to pick anything up. So until I know for sure that I did not pick anything up, I won't be going to the hospital. So it's going to be a bit hard not seeing Bianca much this week, but rather this than her picking up a tummy bug.

This afternoon The Dom Post came to take some photos of Bianca so it will be interesting to see what goes into the paper.