Oh the joys. Tonight Carien and her cousin Adriaan collided. Ada received a bump on his head. Carien cracked her front tooth in half. It looks like two interlocking L’s. She keeps on wiggling the back, loose part forward and back but it is definitely hurting. She keeps on telling me that “oom Sejjit” (oom Gerrit, the paediatrician) must make her better. My poor little baby. I gave her some Panado and she is sleeping now. We’ll see wat tomorrow brings. And on Monday I will have to find a dentist willing to work on the most headstrong child ever.
Woutertjie, Carien and I finally went for the full blood count that should’ve happened on Monday already. His white cell count is 1.1 and neutrofils 0.7 – we are firmly back in isolation. His platelet reading was 70 but since he is bruised all over* Cristina decided that he should get a platelet transfusion. His platelet count will drop some more in the days to come so we are pre-empting.
Sharon (our paediatric oncology nurse) phoned at 12:00 to tell me that Cristina wanted Boeta to get a platelet transfusion. I already signed a temporary discharge form for in case we needed it and left it with her, so I phoned the hospital to open a file so long and Sharon did the paperwork. They can’t request blood products from the blood transfusion service unless they have a file number. Once you open a file at hospital they assume responsibility for your safety. Therefore, if we want to go home and wait for the transfusion to be ordered and delivered we have to sign a temporary discharge, absolving the hospital of responsibility.
Either way. At 12:00 Sharon put in a request for a mega unit of platelets. By 16:00 she phoned to say that it was still not ready but she would let me know when it was. At 20:15 Iola, the night sister, phoned to say that the platelets arrived. And through it all we didn’t get upset or impatient once. Why? Let me tell you.
The blood service keeps lots of blood products in stock. Full blood, plasma, red cell concentrate (this is what Boeta gets when his Hb drops) and small units of platelets. Each hospital keeps a couple of units of blood for emergencies. But for our purposes the blood gets ordered from the blood services depot and then sent to the hospital. A unit of red cell concentrate costs about R800 (a loaf of bread is about R10) – since donors don’t get paid for donating and the blood service is a non-profit organisation, all of the cost is as a result of processing and testing.
Sometimes we get the red cell concentrate within 2 hours. Sometimes it is more like 4 hours. And then it takes another 4 hours to infuse.
Platelets are a different story. It takes many many hours to get ready but runs in within 1 hour. The onco-children get extra large units of platelets, known as mega units. These cost R7500. Since platelets can only be stored for 5 days it makes no sense to keep these mega units in storage. Chances are it is going to go off before it is needed. So whenever there is a request for a mega unit, the blood service has to call up a platelet donor. The donor then needs to get to the WPBTS head office where the cell separation takes place. It takes 2 hours for the process – the blood runs from the donor, through a cell separator and then the platelet depleted blood goes back into the donor. Two needles, in other words. After the donation the platelets need to go through the usual safety testing. After that it needs to get collected from the head office in Pinelands and transported to the hospital. No wonder it takes that long.
The first couple of times when we were waiting and waiting and waiting for platelets I got quite impatient. Until I heard how it works. Now I am so grateful that somewhere in Cape Town someone gave up a large portion of their day to donate cells to keep my son healthy. To that nameless, faceless person: Thank you. From the bottom of my heart.
*Boeta has rediscovered his love of Buzz Lightyear. He has been jumping from the armrests on the couches shouting “to infinity and beyond” this whole week. And he has been crashing his plastic motorbike (into Carien – you should see her bruising) and falling his butt off so I’m not overly surprised at the extent of his bruising. I’m amazed that it wasn’t worse! LOL!
I had a major breakdown today. Turns out I am a bit less stable than I acted. But then, that is fairly typical of me.
I am still struggling to deal with everything that happened in the last 10 days. Hearing that one of our children has passed away has upset me a lot more than I could deal with. I keep on coming back to the fact that the doctors initially thought we would walk that road within a couple of weeks. I just can’t deal with that.
Woutertjie was supposed to go for a FBC yesterday but the day overwhelmed me and today I just didn’t have the energy after letting off steam. So tomorrow Carien is going with for the “bloedtellings” (blood counts). She is very excited to be able to join in the adventure. Go figure.
Sometimes the best response I can give the men in my life is complete silence.
Case in point? Wouter has this hugely annoying habit of diverting his phone or leaving it on silent. No one can ever get hold of him on his cell phone. Me included. Sometimes it isn’t that much of a problem – he does phone back eventually. Usually it makes me go from completely calm to raving mad within 2 attempts.
Last week we were in hospital when I noticed his phone lighting up, meaning that it is on silent and something is going on. I tell Wouter who has a look and determines that he missed the call.
W: (while putting down the phone) I’ve had at least 60 phone calls today and I missed 2 more now.
S: (irritated because he doesn’t look as if it bothers him) So now you are going to ignore those two? Very mature reasoning there.
W: (self-congratulatory) It is what any self-respecting adult ostrich would do.
This week I realised that Boeta is cut from the same cloth as his father. He may be 4 but his mouth is at least 10 years older. Boeta and Carien were screaming at each other. Not screaming anything, just making noise. After repeatedly asking, demanding and threatening for silence I lost my cool and lined them up in front of me. It went like this.
S: (making angry eyes) Wouter en Carien, kyk vir my oë. (Wouter and Carien, look at my eyes.)
Boeta and Carien look everywhere except at my eyes.
S: Kyk. Vir. My. Oë. (Look. At. My. Eyes.)
Carien squints from under her eyebrows while Boeta does saucer eyes at me.
S: How many more times to I have to ask you to stop screaming?
Boeta: (melodramatically frowns and scratches his head as he thinks it over) Twee keer! (Twice!)
Now I ask you. What’s a mom to do? 😀
Today was one of the hardest of my life. Winé was laid to rest in Ashton. Wouter and I, my mom, Deirdre (Ethan’s mom), Sharon (our oncology nurse) and Iola (the sister who first admitted Winé) made the journey to attend. It is about 1.5 hours from Cape Town.
It was a very emotionally draining day for all of us, but ultimately it was a good day. Does that make sense? I feel better after being able to “formally” bid Winé farewell. We brought 12 white and pink helium balloons with us and let them loose after the service as a symbolic way of letting go. Seeing those balloons being whipped away in the wind and then skipping away over the mountains cheered me up in a way. Like them, Winé isn’t tethered to Earth. She was cut loose from sickness and pain and could join our Lord in heaven.
Please keep this family in your prayers now more than ever.
Maybe you shouldn’t have parked in the disabled bay in front of the local store and then walked in to get a newspaper. But you did.
When Wouter confronted you about it, maybe you shouldn’t have answered “Who the f#ck cares about that? I don’t care!”. But you did.
When you saw me staring at you, maybe you shouldn’t have pulled faces at me. But you did.
Maybe I shouldn’t have flipped you the bird. But I did.
And it felt good.
Woutertjie had his chemo for the week yesterday and was discharged this morning. He got Vincristine, Actinomycin D and Cyclophosphamide. The upside is that it is a short hospital stay (the longest wait is the 12 hours of hydration afterwards) and he doesn’t get that nauseous. On the other hand it knocks his bone marrow flat, leading to low immunity, low platelets (bleeding risk) and low haemoglobin (anaemia).
Oh well. We will deal with the hand we are dealt.
Carien seems to be doing better. She still has 3 days of antibiotics and 10 days of nasal spray left. But she complains less and doesn’t have fever. She still covers her ears when there is lots of noise so I guess her ears are still quite sensitive. But she is doing well.