Mixed emotions

Today was one of those days again.  High highs and low lows.  How many times do I have to repeat it?  I do not do rollercoasters.  Emotional or otherwise.

Woutertjie received no radiation on Monday because the doctors were worried that he might still be dehydrated from the weekend.  Yesterday he received his 22nd dose.  It didn’t go as well as the first 20 times though.  On Friday he started gagging as soon as the anaesthetic was injected but Elizna thought that it may have been too much saliva or something innocent like that.  Yesterday, thank God, they came prepared for something similar. 

As soon as the anaesthetic hit him Woutertjie started gagging and turned blue.  Elizna said afterwards that she suspects he has oesophagitis, a bit of reflux and lots of radiation-related irritation of his oesophagus and stomach, causing his larynx to go into spasm to protect his lungs from the stomach contents that pushes up.  Or something like that.  I’m just the mommy.  I can’t be expected to remember all the detail.  Sue me.

Either way, I haven’t seen Elizna and Nici work so quickly before.  I’ve never seen anyone literally turn blue before and I hope I never have to see it ever again.  It is very disturbing.  They sorted him out quickly and the rest of the session went smoothly. 

Afterwards Cristina (oncologist), Gerrit (paediatrician), Elizna (anaethetist) and Dr Jacobs (radiation oncologist) spent lots of time to-ing and fro-ing, trying to decide where to now.  For now he will not receive any more radiation this week and I am waiting to hear from Cristina whether he will receive any more at all.  The radiation is doing him no favours.  He is one very sick little boy at the moment.  And face it, there aren’t any tumours.  This makes it very difficult.  If there are tumours you can look at them to see if they are responding.  If there aren’t you are flying blind.

Woutertjie is struggling at the moment.  He hasn’t been eating at all since before the weekend.  A good day has him eating a spoonful of yoghurt and 4 jelly tots a day.  He weighed 19.1kg when he was diagnosed the 24th of December.  When radiation started 6 weeks ago he weighed about 17.5kg.  He was 16kg on Sunday and 15.4kg today.  That is major weight loss.  He has been on TPN (total parenteral nutrition) since Monday evening.  That means that he gets a milky mixture of all the nutrition he needs into his drip.  He managed to drink about 30ml of Energade this afternoon and hasn’t vomited since yesterday, so I have firm belief that he will start getting better soon now that the radiation has stopped.

Why did no one tell me that radiation is this bad?  My little fighter who didn’t lie down in the middle of chemo is wasting away.  He looks like a broken bird.  He was born at 4.2kg and has always been tall and big and strong.  Within 2 weeks he has gone from chemo-skinny to skeletal.  I can’t take it.  It is going to break me.

The high?  We are probably done with radiation. 

The low?  Here are the pictures.  See for yourself.

25 May 2006 - 1 year and 1 month old

25 May 2006 - 1 year and 1 month old

9 February 2008

9 February 2008

 

18 November 2008 - Still an innocent baby

18 November 2008 - Still an innocent baby - a month later he was diagnosed

 

29 December 2008 - 5 days after diagnosis and still naive and innocent

29 December 2008 - 5 days after diagnosis and still naive and innocent

19 January 2009 - 2 weeks after the start of chemo - loosing hair, weight and innocence

19 January 2009 - 2 weeks after the start of chemo - loosing hair, weight and innocence

 

12 May 2009

12 May 2009

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17 Responses

  1. Suzanne, my hart breek vir jou. Ek dink nog elke dag aan julle. Baie liefde, Sue

  2. Suzanne you have every right to hate the rollercoaster! No one would choose to go thru what your brave wee man and family are going thru. It is OK to have bad days, I couldn’t imagine watching my little boy getting that unwell. You may not feel like you are strong – but you are, please remember that He does not give us anything that we can not cope with. Use all the shoulders you have around you and take one step at a time (even if it feels like it is backwards at times). We are all here and send you our prayers and best wishes for today – may it be a better day.
    Lena, Al and Tyler.

  3. I am so sorry things are so very tough for you and little Woutertjie.
    I pray incredibly hard for you and keep you in my thoughts and prayers!

  4. My hart breek wanneer ek die foto’s sien. Ps 115:11 ~ “Julle wat die Here dien, vertrou op die Here! Hy help en beskerm julle.”
    Ek vertrou dat dit vinnig beter sal gaan en hoop dat Woutertjie weer spoedig vir sy gunsteling kossies sal lus raak!!

  5. Hi, Ek lees jou blog al van Januarie, en is oorweldig met hoe sterk vrou en famili julle is. Dis waar wat die ander mense se, “God sal julle nie deur iets laat gaan wat julle nie sal kan deur maak nie”. Ons het nie kinders en verstaan dalk baie min wat aangaan, maar ek wil jou bemoedig en vir jou se “dat julle is spesiaal vir hom, en toe wouterman se blou geword het, was dit net God wat hom gou ‘n drukkie kom gee het” Hou moed, God het julle lief.

  6. Suzanne, ons bid elke vir julle en dat Wouter gesond sal word. Sterkte en pas jouself op. Ons kan ons nie regtig indink waardeur julle moet gaan nie, maar ons glo dat God vir julle die krag sal gee hiervoor. Jy doen amazing! Ek is so trots op jou. Liefde Sarita

  7. Ek moes vandag toestemming gee dat my een haas wat nou al 5 weke lank in die dierehospitaal is uitgesit word. My hart breek. En ons praat nou net van ‘n haas. (@#$@#$%#% duur haas!)
    Ek wil nie weet hoe dit voel om jou kind te sien ly, en siek wees en agteruitgaan nie. Veral as mens voel die Liewe Vader het hom dan klaar gesond gemaak nie. My hart sê julle moet stop met die behandeling wat hom net sieker maak. My kop sê as kanker terugkom bring hy sy ouer broer saam. Ai, Suzanne, ek bid vir julle en vir wysheid vir die dokters. Sterkte Vriendin.

  8. BIG ((HUGS)) to you all Suzanne! I can not even begin to imagien the emotional roller-coaster that you are all on at hte moment. I think of you and pray for you every day!

  9. My thoughts are will you all. Constantly.

  10. Zani, ek probeer nou iets witty en opbeurend se.. maar dit werk net nie. Jy’s die beste ousus en ma in die wereld! Moenie in jouself twyfel nie, want jy’s seriously sterk met God wat jou krag gee. Baie drukkies!!!!!

  11. Suzanne, jou storie het my diep geraak. Ek wil net vir jou se jy moet sterk wees en glo in GOD wat jou krag en lyding sal gee. Julle almal is in ons gebede. Baie, baie liefde van iemand wat jy nie ken nie

  12. Soo hard for you to look at that beautiful little face and frail (for now) body.
    Praying for strength for all of you and for God to continue holding your little boy in the safe palm of his hand.
    Lots of love

  13. Grace is the first word that springs to mind

  14. Vandag het ek nie woorde vir jou nie. Gebede ja, maar nie woorde nie!

    (((((((((((((((((((((((((hugs)))))))))))))))))))))))))

    Liefde

    N

  15. Hi Suzanne

    My prayers are with you guys… I cant say i know what what you’re going through but keep the faith. lots of love.

  16. OMW I cannot believe the change in him. Wow.
    (((HUGS))) I wish I could hug you in person actually.

  17. Suzanne & Wouter

    Baie sterkte mensies!!! Ek dink erg baie aan julle en julle pragtige seuntjie! ( en julle pop-gesig dogtertjie)

    It WILL get better!!!

    Hugs, prayers & love!
    Amanda

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