The intellectual, the player and the other one

Of all the families we met during this time I feel the closest to the Taylors.  For one thing, Deirdre also yells at her children while she is talking on the phone.  So whenever we are talking the conversation is frequently interrupted with one of us shouting “Get off there!” or “Don’t make me come over there!” or “Leave your brother alone!”  Typical mom-stuff.

Damascene and Deirdre has 3 sons – Ewan, Ethan and Declan. 

Ewan is the big brother at what?  10 years old?  He is the smart one.  After doing badly in Afrikaans last year he got a lot of Afrikaans books as a Christmas present.  He spent Christmas crying because … uhm … he got books as a present.  Deirdre told me tonight that his highest marks this quarter was for Afrikaans.  Way to go!  After one of the most disruptive times a child can have he managed to do better in school.

Declan is the baby.  He is 2.  He is shy and chatty all at once.  Just a normal little boy.

Ethan is 6.  He is the one with Wilm’s tumour (nephroblastoma – kidney cancer).  And he is a  p l a y e r.

The last couple of weeks we’ve been having a wonderful time keeping abreast of his blossoming love life.  See, Ethan has his first crush.  On Monique, one of the sisters in the ward (if you follow the link she is in the first photo).  She is tiny, beautiful and married.  And has a child of her own.  Nothing to concern yourself about when you are 6 years old. 

It is so sweet.  He has a special smile for Monique.  A smile that makes promises of shared sweets and the last Rolo.  When he is tired of everyone else and grunts goodbye at the end of the day he spends a lot of time making sure he greets Monique properly.  With a drawn out “goodbyyyeeee” and a flirty shy smile.  Monique gets very aggro when we talk about this – she tells us to leave him alone and stop messing with him.  But it is so much fun!  😀

Being as enchanted with her as he is, one would expect Ethan to carry a torch for Monique alone.  But no.  Ethan managed to get another sister’s home and cell phone numbers today.  I hope Monique doesn’t read the blog – I would hate for her to find out this way.

He now has a special relationship with Elsje as well (on the second last pic of the linked post).  He told her today that he trusts her not to hurt him.  In onco-kid terms that is major commitment.  And Elsje told him that he could phone her at any time at all.  So upon leaving the ward he insisted on getting her numbers. 

This child is 6 and already gets numbers off women.  He has potential! 😀

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An angel earned his wings this evening

One of the stories that I wanted to tell you the past week is about Stephen du Toit, a 15 year old with leukemia who heard that a bone marrow donor was found for him.  That happened on Tuesday.  He and his family were so happy and he looked healthy and good.

Fast forward to tonight, where Sharon came into my hospital room (I had my umbilical hernia done today) to tell me that Stephen suddenly passed away.

He was supposed to go home tomorrow.  He was supposed to get his transplant and get better.  He was supposed to live.

Please pray for Stephen’s parents, Morné and Lindie and his sister, Milandi (she is about 12 years old).  They really need all the support they can  get.

My heart is broken.

Ugh.

I am going in to have my hernia repaired tomorrow.  I am so not in the mood.  But I think I should be more worried about myself if I actually looked forward to it.

Wish me luck!

What a wonderful day!

Some days are better than others and this was a good one.  Such good news all around!

It was one of Those Days for Sharon though.  We were in the hospital for almost 3 hours just to get bloods taken!  But hey, that’s the way it goes.  Cristina did her rounds soon after we arrived and Sharon has to join in.  And it was a long ward round since:

1.  Enrico can move his toes when his feet are tickled.  This is wonderful because it means that the pressure on his spinal cord is lessening, in other words, the tumour is shrinking.  It is wonderful!  So Cristina spent a lot of time with him.

2.  They found a bone marrow donor for Stephen.  I can’t tell you how wide Lindie’s (his mom) smile was!  And Stephen’s too!  He is a very quiet, reserved child (and a very tall one – he towers over me and I am 1.72m) and I’ve never seen him smiling as much as today.  He even laughed at Woutertjie and Carien’s antics and of course, my embellishments of the antics*.  Stephen is in a 4-bed room and we joined him, Lindie and Milandi, his 12-year old sister, when Woutertjie’s bloods had to be done and my children were at their best.  Carien was charming and Boeta wanted to stay in hospital.  Normal stuff, in other words.

3.  Vanja started treatment today.  So that is another long Cristina-visit.

Moral of the story?  Even when you are done with treatment you should never think that you will know how the day goes.  But it was so good to spend the day in hospital with Enrico and Stephen getting good news.  This is the upside of this life.  The highs are skyhigh.

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*I don’t see myself as constricted by facts so much as guided by them.  And if I can get a laugh by over-telling, why not.

PS:  Woutertjie’s counts aren’t so high though.  Platelets normal (233) but Hb 8.6 and white cells 1.2 with neutrofils 0.34 – looking at this we should’ve stayed home the whole weekend.  In our defense, we didn’t know that is was that low.  I thought his white cells would be around 4.  We are so blasé about his immunity sometimes and it is a bad thing.  We’ve been extremely blessed that he stayed so healthy throughout his treatment.

Good friends are good to have

Today (a public holiday in SA) we went to Eugene and Annie’s and had a wonderful time.  Charles and Stephanie also came over and between Annie and Stephanie they arranged the most fabulous lunch ever.  All we had to do was show up and relax. 

It was a good day.

Sooooo. This is normal life then?

Also backdated.

We tried on the “normal family” shoes today and went for a picnic.  With a little bit of this, a little bit of that and cheese griller pies for the kids we found a spot and spent some time.  It was good.

The two of them explored on their bikes and had a roaring time.  When we wanted to go they kept on insisting on staying a bit longer.  So we did.  🙂

The bad parts of the day

I am backdating this post – I want Stephen’s story to be told the right way.

One thing I’ve learned from cancer is that laughing and crying go very close together.  At any one moment it can be the best of times and the worst of times.

Today was one of those again.

While Woutertjie was finishing up and we were rejoicing, three other families weren’t having such a good time.

First up, the Joffe family.  Vanja is the most beautiful 7-year old girl and was diagnosed with leukemia last week.  She was transferred to Panorama on Monday and will start with treatment next week.  She had her Broviac line inserted today.  Please keep the family in your thoughts.  They have a long road ahead.

Secondly, the Du Toits.  Stephen is 15 and also has leukemia.  He was diagnosed last year and responded really well to treatment.  Earlier this year he was declared to be in remission.  Then he suddenly relapsed about 10 days ago, after being on maintenance treatment for only 3 days.  He was supposed to start school again this past Monday and it really got to him being stuck in hospital again.  He needs a bone marrow transplant now and today they heard that his parents and sister aren’t matches.  This is quite a blow since the odds for a match drops to one in thousands when you start looking out of the family.  Now it is off to the national donor registry.  If you aren’t on the registry yet, get yourself over there and register.  I have spoken.

Lastly, the Fourie family.  Enrico has been complaining for several days about a sore tummy and it got so bad that he was hospitalised.  Since he recently had a scan he couldn’t be scanned again but sonar didn’t pick up anything untoward.  On Wednesday he said that he legs hurt and yesterday he couldn’t walk.  Dr Adri van der Walt, a paediatrician that does a lot of neurological work, was called in and after checking everything out the doctors decided that he probably had side-effects of the new chemo that he is getting.  This morning when he woke up he couldn’t move his legs.  Literally overnight he became paralysed from the waist down.

Enrico was taken for an emergency MRI which showed a tumour growing on / in his spine, pressing against his spinal cord.  While still under anaesthetic (Elizna and Nicci did his too) he was taken to the radiation bunker and had emergency radiation.  (With Woutertjie they planned a week before they started the radiation.)  Enrico will receive daily radiation for the next 4 days while continueing with radiation.  Please keep this little fighter in your prayers.   He has been through so much already.  To his parents, Chris and Johanetta, you are special people.  Really special.