The day after the day before

In the last 4 months we experienced many changes.  One of the greatest for us is how quickly Woutertjie gets tired. 

After yesterday’s adventures Boeta is obviously tired today.  He doesn’t run, he doesn’t work on Carien’s nerves.  He sits quietly and watches TV.  And he is easily irritated.

Irritation is one of the signs we’ve learned to recognise as a sure indication of his Hb (haemoglobin) level taking a tumble.  The most obvious sign of anemia is paleness but since we see him the whole time we don’t really notice that.  When he answers an innocent question with an ear-piercing scream we know that it is time to stand back and look at how pale he is. 

Here are our signs with the associated estimated Hb level:

(Normal healthy level = 13 / adults are flat by the time it drops to 9)

Doing well, running round like he is 100% fine  –  –  –  estimated level 9 – 13

Pale but not yet irritated  –  –  –  est level 8 – 9

Pale, irritated and tired  –  –  –  est level 7 – 8

Pale, irritated, tired and with red rings around his eyes  –  –  –  est level 6 – 7

I don’t know why his eyes become red-rimmed when his Hb goes really low.  It is a sure sign that we have blood transfusions in our immediate future.  At the moment I estimate his Hb to be in the high 7 range.  We will see what the blood tests say tomorrow.  Will let you know!

A day of firsts

Today was novel in many ways. 

 

1.  For the first time we are in a general ward.  All three the chemo kids were placed in a 4-bed ward out of the way of all the sick kids.  The private rooms are slap bang in the middle between the isolation ward (gastro, encephalitis, etc) and the “normal” germ wards.  Since the paediatric ward is chock-full at the moment it seemed the prudent thing to do.

This means that 3 boys aged 4-and-a-bit, 4-exactly and 3-and-a-half are sharing a room.  Oh my shattered nerves.  They all have Broviac lines (permanent drip lines) and are all used to extended chemo sessions.  But until now they haven’t met because they were always kept in isolation from everyone else.

They had so much fun.  When the time arrived for them to go on their drips the nurses had to place their drip stands in opposite corners of the room to keep them from getting snagged in each other’s lines.  They were counting the seconds until they were let loose.

 

1.  Boeta received his first radiation today.  He had general anaesthetic again since he is very scared of the machines.  He has to get a total of 33 daily treatments and if he doesn’t learn to lie still for it he will have to get general for every one. 

The anaethetist, Dr Elizna Basson, is really amazing.  By the time the porter arrived to take Boeta back to his room he was already sitting up and talking.  He wasn’t “all there” by a long shot but by the time we got to the room he was eating salt & vinegar chips and demanded Coke.  This woman knows her stuff!

 

1.  Today was the first session of Boeta’s new chemo drug, Irinotecan.  This is the excessively expensive one.  I heard this morning that Discovery is indeed paying for it.  Thank you God for yet another blessing!

I am quite anxious about how he will react to it as it can have nasty side-effects.  Please pray that Boeta will stay strong.

 

1.  For the first time since chemo started Woutertjie has normal white cell levels.  It was 9.1 this morning.  I am quite shocked! 😀  This shows that after 3 weeks without chemo his body can get things up and running again.  His Hb is still lowish (10) but not close to his all time low of 6.5.  Life is good!

No surgery!

Yes, there is a connection between Wouter’s silly smile and me not updating the blog yesterday. 

Gerrit (paediatrician) phoned yesterday to say that Dr Sidler, the paediatric surgeon, decided that it wasn’t necessary to operate on Woutertjie.  This is such fabulous news!  Surgery is always a risk and since they were planning on taking biopsies there was a significant risk of bleeding.  Praise God!  We’ve been so blessed throughout this journey. 

So yesterday I was walking around with a silly grin and I spent so much time on the phone that I didn’t get round to blogging.  Of course it didn’t help that I put Carien in bed at 20:00 and she promptly put me in bed too.  It has to be her fault, right? 

I never get a chance to to anything on the computer with the kids around.  Woutertjie wants me to stop everything and let him play internet games (Thomas the Tank Engine) and Carien wants to watch pictures of babies.  And they want to sit on my lap at the same time.  Fun times!

We went for a full blood count today and according to Gerrit the results are good.  He couldn’t give me the exact numbers though – they phoned him with the results and he couldn’t remember the exact counts.  Shame on him.  But Boeta’s counts are good – we can see that from his behaviour too.  He is running, playing and eating, eating, eating.  I love it!

Gerrit also told me today that the medical aid denied parts of Woutertjie’s next treatment.  The expensive parts.  I contacted them and it seems to be an administrative issue between the oncologist & radiologist and Discovery at the moment.  The drug that was denied is the R35 000 per ampoule one that I told you about.  And the radiotherapy is also very expensive.  Please pray that it gets sorted ASAP and that Discovery will pay.

Can you feel it? Can you see it?

I’m doing a happy dance!!!

Gerrit ( I love you, I love you, I love you!) suggested that we go away this weekend.  Hey, if your child’s paediatrician thinks he is fine to travel you don’t wait around for him to change his mind!  So tomorrow we are off to Wouter’s parents in Pringle Bay.  It is about an hour’s drive from here and the ultimate rest spot.

Boeta’s FBC this morning:

Hb 10.1 (we can see the difference)

platelets 330 (or something like that)

white cells 2.4 (!) of which neutrophils 0.6

We will be in semi-isolation with no visitors but at least we will be away from home.  Can you feel my excitement?

The last time we visited Wouter’s folks was end November / start December and we were on our way there for Christmas when Boeta was diagnosed.  It has been a long time.

Gerrit will let us know when we should report at the hospital again.  I will let you know when I know.

For now I am off to start packing.  Yes, it is only 16:30 on Thursday but I’m excited, OK?

We are … 60%?

Turns out I caught Carien’s tummy bug.  No wonder I feel out of sorts.  I don’t get sick a lot and I don’t know how to deal with my body not being 100%. 

In our house the stereotype is reversed.  When Wouter gets sick he becomes the bravest, strongest, understated-est patient ever.  I become sorry for myself.  Go figure!

Wouter nearly had heart failure.  As a joke I told him I think I am pregnant because I felt better after I had dry toast.  We are planning on expanding our family but not now!  His face was so worth it. 

Tomorrow morning Woutertjie is going for a full blood count, followed by a blood transfusion if necessary.  It could turn out to be a long day.  Here is our estimated iteni itine itinn plan for the day.  I pride myself on my vocabulary and spelling skills but that other word that shall not be mentioned I simply can’t get my head around.

7:30  Arrive at hospital and get Woutertjie admitted

8:00 Arrive in the ward

8:30 Blood is sent away

9:30 Results are back

10:00 Blood is ordered from the depot

12:00 Blood arrives

12:30  Transfusion starts

16:30 Transfusion ends

18:30 Post transfusion observations complete

19:00 Paperwork done and we can go home

Based on arriving home at 19:30 that would mean that Wouter will be home before we are. 

I was forced into adding the previous sentence by Hugo, Wouter’s co-worker who read the blog every day.  After yesterday’s “discussion” about Wouter’s work hours Hugo sent me thinly veiled threats if I didn’t mention that Wouter got home at 17:30 today.  I can’t begin to describe how much I appreciated it when the door opened and my bestest, sweetest, funniest, supportive-est husband walked through it. 

Tomorrow I am making an appointment with the oncology social worker to start working my way through my issues.  Wish her luck.

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.

Blessings by numbers

I feel like a broken record.  We are so blessed!

This morning I phoned the oncologist to find out if Woutertjie should go for full blood counts today already.  The idea is that, if his levels aren’t on par, a blood transfusion can be arranged before his chemo starts.

For various reasons (most of it involving me being very lazy today and some involving Woutertjie being in isolation) I only got round to taking him at 16:00.  The whole way to the hospital I had to prepare him to go home again.  He was adamant:  he wanted to visit the “tannies” at the hospital and he wanted to sleep there tonight.  Trust my son to turn the typical response to hospitals upside down!

Dr De Villiers (paed) sent Boeta’s results to us:  Hb 9.0 (was 7.8 ) ie OK, platelets 834 (was 71) ie very good, white cell count total 4.1 (was 0.8 ) of which 1.07 (was 0.02) are neutrophyls, ie wonderful!  We are so grateful.  This means that chemo can start again tomorrow.  Thank you God!

I spent many many hours fighting my way through immunology at university.  Let’s say it wasn’t my strongest subject and leave it at that…  It must be one of the most challenging fields of study because everything you think you know can change at any time as research progresses.  As previously dwelled on, I’m not good with change in the fundamentals.  Minor things I don’t care about.  But don’t change my morning routine, my bank account number, my cell phone number or the taste of Coke.  You will be messing with the wrong woman.  My female ancestors went barefoot over the Drakensberg, after all!  And immunology is all about change. 

So imagine my surprise when I realised this weekend that I am grateful for the bits of immunology info that actually stuck around.  For one thing, I know the bare basics about white cells, where they come from and what they do.  At least according to the knowledge available at the time of study.  God has a strange way of arming one for what lies ahead.  In this time of constant change I feel anchored in my basic knowledge of immunology.  Who would’ve thought?

Tomorrow morning at 07:30 Boeta and I will report to the paediatrics ward for his 5th round of chemo.  The previous time that he received this particular drugs it caused mouth ulcers, nausea and eventual dehydration.   If he doesn’t have side-effects we could be out of hospital by Wednesday but we are fully prepared to stay longer until he is ready to go home.  Please pray with us for our son.