Feeling frustrated

Today I just feel frustrated. I just really want to get to the point now where Bianca's port can come out.

We were all set to get Bianca's port finally taken out tomorrow. On Monday (as some of you might know) we had to visit the GP. Bianca has been complaining of a sore neck / throat since Friday and Monday we could feel the swollen lymph nodes by her neck. For a moment there we thought maybe she somehow picked up mumps, but her doctor told us when we called that she has retained immunity against mumps and the only immunisation she'll need to get would be for Hepatitis. (Yeah!). However, he wanted us to take her to the GP because she might have some kind of infection. So that's what we did and Bianca had to get a range of blood tests done. Yesterday got a call from the GP and they can't see anything specific in the blood test results other than that she is fighting an infection and can we please bring her back for another checkup tomorrow (which was today really).

Then today I got a call from Bianca's oncologist and he pretty much told us what the GP told us and mentioned that he is happy with her "healthy response" to the infection and that at the moment they are not concerned about any leukemia cells hiding somewhere (so that is a huge relief to know that). But he also said that we'll now have to wait for this infection to be fully cleared before they will take her port out (sigh!) and that unfortunately he read wrong the last time and she pretty much will need to get ALL her baby immunisations all over again (double sigh!).

So now we are scheduled for another blood test next Tuesday to see if the antibiotics are doing their job and if further tests will tell us a bit more about what we might be dealing with.

And we are waiting to see when the next theatre appointment possibly could be.

So today I just feel frustrated. I really just want to move on now. But we'll just have to wait and see as usual I guess and not put our hopes up too much until it actually happens...



And it seems tomorrow will not be the day. We've been bumped - again! To the 1st of April. Sigh. It is not surprising though, just disappointing. But either way we are going in for a port flush tomorrow as it's been more than a month now. Sigh. Fingers crossed that this time round they won't bump us again.


Reaching THE point

If all goes well Thursday will be THE day. If all goes well on Thursday Bianca will get her port removed. Bianca knows it is going to happen, but since she doesn't remember a time without her port, she doesn't really know what to expect. But it feels wonderful to reach this milestone. 6 months off treatment - wow!

In the beginning, reaching long term maintenance felt so far away, then we reached that and the end of treatment felt like a far and distant point and now we are here.

Bianca wants to get her ears pierced and actually wanted it done the other day already. We've always said we will let our kids decide when they are ready to get their ears pierced, but of course for Bianca, she can't really go into theatre with newly pierced ears, so we had to tell her that she would have to wait till after. So not quite sure when after - I still have to find a place that is good with kids. Any ideas will be greatly appreciated.


Late update - I'm sorry!

I feel incredibly guilty for not blogging sooner. I should have updated after Bianca's last hospital visit which was the 22nd of February. But simply, time ran away with me. All Bianca's counts are looking good. White cells were a bit on the high side, but that is in all likelihood just some kind of mild infection lurking around there somewhere. The rest of the results all good, so no worries there. They took an extra sample to test Bianca's immunity against measles, chickenpox and so on and so by our next visit we'll know if Bianca will need to get her baby immunisations again or not. I'm really hoping she would have retained most if not all immunity, but the doctor says that is very unlikely. Uggh. I used to hate taking Bianca for her baby immunisations and Terence often ended up having to do it and this time will be way worse because Bianca is older. Yes, yes, I know we've been through the whole cancer thing and chemo and all sorts of things, but whenever there is some kind of needle going into an arm or leg - I hate that because Bianca hates it.

We are also getting pretty close to getting Bianca's port out. I'm sure it will feel as if Bianca is missing something. Her port has been part of her for so long now and she really can't remember a life without it. To her it is part of her. We've asked if they could please make sure we get it back because Bianca will want to see what it looked like (and us too).

The only thing that really struck me on the 22nd though is how extremely tired Bianca was after the visit. She became really quiet in the car on the way back home and literally 5 minutes after getting home Bianca was fast asleep. Unfortunately we are not quite there yet with Bianca's eating. Hard to know if it is as a result of the chemo, or if Bianca might be turing into one of those vegetarians who prefer chicken rather than red meat or if she is just being 6 and fussy. And she lost 1kg since her visit in January. Doctor is not all that worried at the moment because she is within her range, and I guess it is just a matter of putting my foot down a bit more. Along with that Bianca doesn't always sleep all that well. It suddenly occured to me that maybe this whole new fast-paced normal lifestyle might actually be a bit much for Bianca. Sure she copes emotionally, but physically, perhaps not so well. Since I started work we would wake up early, rush out the door, drop Bianca off at before-school care, then school, then after-school care and finally home by 6:30pm. And I guess that is the challenge, finding a normal without putting too much pressure on Bianca. I guess it is easy to sometimes forget that it can take a while to fully recover.

But it is also funny how things work out because it just so happen that I had to resign from my work (last permanent full time work day 29 March and then contracting part-time for the month of April) because Terence's job situation is busy changing and in all likelihood will mean moving back to Wellington. Which means I will stay at home again and this should hopefully have a positive effect on Bianca's energy levels.

And that is our news in a nut-shell...