About today

Today I had to convince my son to go for an injection.  The same type that he had yesterday and has to get tomorrow.  Yesterday he was more willing than today.  I am dreading tomorrow.

He knows that the numbing patches I put on his leg beforehand signals imminent pain.  Less pain because of the patches but pain nevertheless.  According to the doctors the bone marrow boosting medicine (GCSF) burns like … like … like something that burns a lot.

And to top it all off we have to go to hospital a second time tomorrow afternoon to see the oncologist who will decide if he needs a 4th injection based on the full blood count that will be done the morning.  So then I have to deal with a petrified toddler who will not believe that there are no injections involved this time.

I am so tired.  And because we are in isolation I can’t take the kids to my parents and have a rest.  He may not go anywhere and any outsiders have to be masked when they are in the same room as Boeta.  Have you ever spent a lot of time in a mask?  It is hot and uncomfortable and irritating and makes people without claustrophobia claustrophobic.  I don’t have to wear it (because I’m the mommy – my germs are special) and I can’t expect my mom to come to our house with a mask in this heat.  For those in other parts, Cape Town is in the middle of a heat wave.  It was 36 degrees yesterday and above 40 today.

And to be honest I don’t think resting or sleeping will make me feel better.  I am tired of the situation.  I am tired of being a regular in hospital.  I am tired of having to explain to Boeta why he has to be hurt.  I am tired of Carientjie being exceptionally clingy after I spent days in hospital with Boeta.  I totally get why she is clingy but I feel sucked dry of energy and then I feel guilty because I neglect her. 

Wouter and I have 5 minute chats in the morning, maybe 5 minutes on the phone during the day (in 30 second installments – he rarely has time during the day to talk) and if we are lucky 15 minutes at night before we both fall asleep.  I have to add that we are not, I repeat, not having relationship problems.  So don’t worry about that! 

I just really miss having time with him, not always talking but simply spending time together.

He is home!

After 10 days in hospital in isolation connected to IV tubes Woutertjie is home!  The boys (Wouter and Wouter) arrived home at 8 this morning.  Boeta is currently lying on the couch twisted up like a pretzel, watching Cars and eating pretzels.  OK, he is now lying with his bum on the armrest and his head on the seat – I stopped asking questions long ago!

Just to keep the balance in the day I managed to have a shocker until now.  Carien managed to lock herself into my car.  So there she was, sitting strapped into her carseat holding the car remote and looking very impressed with herself for managing to have a boat load of adults looking at her through the windows.  And all the adults are miming their version of “press the button – no the other button”.

Eventually a locksmith had to be called in.  And bless him, he didn’t charge a cent for rescueing the damsel in distress.

Of course Wouter is trying to convince me that I am not to blame.  He is telling me that I am tired and tired people make mistakes and all that jazz.  He doesn’t seem to understand that I am unlike other people.  I am the one trying to convince people that they shouldn’t be so hard on themselves while off in the corner I’m beating myself up for not being absolutely perfect.  So can someone please tell Wouter not to interfere with my self-flagellation?  It takes all the fun out of it.

Anyway, we are at home for the moment.  On paper we should be here until Tuesday’s chemo but reality might just interfere with our plans.  So we are enjoying every moment and not worrying (too much) about tomorrow.

I’m being abducted by Annie and Stephanie (my longest and second longest friends) today.  I have no idea what they are planning but as long as it doesn’t involve hospital or home I’m fine with it!

Have a good weekend everyone!

We may just get to go home tomorrow (God willing)

Another good day.  OK, he hasn’t received his sub-cut injection yet and it will be an issue but it isn’t right now.  See, I’m taking it moment by moment.  Aren’t you proud of me?

Dr De Villiers (the paediatrician) was here a minute ago.  He is very happy with Woutertjie’s lack of fever for the last 2 days and if it stays like that during the night we can go home!  I never realised how much I love being at home with my whole brood.

Boeta’s white cell count is 3.1 as of this morning.  That means that it just about doubled over the last 36 hours.  Fabulous!  As a result his IV antibiotics came off for the first time since he was admitted last Thursday (9 days ago).  He was quite jittery about it coming off.  It took about an hour of explaining and calming him down and even then he barely lay still for it.  Fortunately because he has the Broviac line it is only a matter of unscrewing the connections and not removing and later redoing “needlework”.

He is finally succumbing to cabin fever.  The whole day he hears the other children (mostly day-admissions) in the ward and he wants to be there.  But he has to stay in his room.  Fortunately at night there are usually only one or two other children so it isn’t as tempting.

Unfortunately for Boeta going home will not mean seeing other children (except for Carien obviously!).  Dr De Villiers was adamant that outsiders should be avoided.  Boeta’s white count is still very low compared to “normal” people and he needs to be healthy for chemo on Tuesday.  So if you planned on visiting – don’t!  We will lovingly wave to you from behind our fence but that is as far as you will be allowed.  Because we are on a mission.  Mission Possible!

I don’t know if I’ll have time to update over the weekend but we will be back in hospital on Tuesday and then I’ll update.  Have a good weekend!

Boeta is in isolation for the first time

The oncologist, Dr Cristina Stefan, came by.  Boeta’s white blood count is low enough to be considered zero.  Based on the results he should’ve picked up an infection by now but he is healthy as a horse at the moment.  Just another miracle.

We expected that his counts would drop as it is one of the effects of the chemo.  The low-point is usually between 10 and 14 days post-treatment.   Today is the 10th day.  So in 4 days time his counts should start to increase again.  The oncologist is quite pleased that his white cell count dropped so much.  It is an indication that the chemo is working well.  Now we just have to keep him healthy for the next round on Tuesday.  Please pray with us!

I mentioned to Dr Stefan that Boeta’s abdomen seems to be a lot flatter.  She looked at me, looked away, looked at me again and said that she doesn’t want to say too much based on purely feeling his stomach but that the tumour feels smaller.  This is purely based on how his abdomen feels.  Lots of things could be going on inside and we will only know during the week of 17 March when the re-assessment scans are done.  I believe that God is good and great and will heal our child completely.  Praise our mighty God for carrying us this far and for sending amazing doctors, nurses, supporters and friends our way.