Honesty is so overrated

I always thought I prefered honesty.  Rather give me the bad news up front and get it over with.  How wrong I’ve been.

I’ve decided that I don’t like honesty at all.  I don’t even like news, for that matter.  I don’t like doctors and I don’t like nurses and I particularly don’t like being strong.

This morning when I had to put on the local anaesthetic patch Woutertjie started screaming already.  He knows that it precedes an injection.  For the first time since this journey started I faked my way out of the room when he had to get the injection.  I just can’t take it to hear him screaming for help while I have to help hold him down.  The whole way home he was telling me about how the “tannies” gave him an injection and how he cried and I wasn’t there and then I came and said “what happened” and then he told me and then he cried some more. 

This afternoon we saw the oncologist, Dr Stefan again.  Boeta’s white cell count is still so low that he has to get 2 more injections over the weekend.  I am not strong enough to do this.  At least not today.

She also said that, until now, the survival rate for stage 4 rhabdomyosarcoma was 0%.  Yes, zero.  With this new protocol that Boeta is on the prognosis is “very good”, meaning a 30 – 40% survival rate.  To me 30 – 40% does not sound very good and I told her so.  She looked at me with a shocked expression and said but of course it is good because that means one out of two or three children survive.  That still doesn’t appeal to me.

Next week Boeta will get a 5-day course of chemo, provided that his white cell levels are up to it.  The next week all the scans will be repeated.  We don’t know which day it will be done on as they have to give the chemo long enough to work but not too long because if his levels drop too low they can’t give him contrast (necessary for the scans).  Based on the results of the scans a couple of things will happen.

1.  Surgery the next week (if sectionable).  This would be wonderful.

2.  Daily radiotherapy (bestraling) starting two weeks later.

3.  New chemo drugs starting two weeks later.  The medical aid may not want to approve this.  The drugs are hideously expensive and he will need 12 courses of 5 days each.  This is a very new drug and I don’t know if it is on the list of approved meds.  Depending on the scan results they may also say that Boeta didn’t respond sufficiently to warrant such expensive treatment. 

So I need you all to pray, pray, pray.  We desperately need the tumour to be out of Boeta’s heart.  That is the major worry because the heart can’t be operated on and can’t recieve radiotherapy.  According to the doctor, if he responded well to the chemo until now and the tumour is out of his heart and if they can do surgery and remove as much as possible of the remaining tumour Boeta’s chances for survival will increase significantly.  Please pray.  Both Wouter and I are so tired. 

Personally I am really struggling to pray at the moment.  On the one hand I feel that I’ve already asked for healing, so why am I repeating it the whole time?  And on the other hand I just don’t know what to say to God.  So I find myself starting to pray and then stopping because I don’t have words.  Please pray on my behalf and for me because I am really not doing well at the moment.

I feel like God is out of reach and I absolutely hate the feeling.


6 Responses

  1. Suzanne, my hard wil breek as ek dink hoe jy moet voel! Ek weet jy voel nie op die oomblik so nie maar jy is ‘n ongelooflike mamma en vrou. jy mag maar voel soos jy nou voel en weet God verstaan ook Hy het ons immers gemaak. Ek bid vir jou en jou gesin dat God jou die krag en hoop sal gee wat jy nodig het. Baie baie sterkte!

  2. I’m so incredibly sorry that your road is so hard, so challenging and so exhausting. I so wish you guys never walked this journey. So I will do as I always do and keep praying for you guys, I keep thinking of you guys and I wish I was there to offer you hugs! But unfortunately I’m so far away.

    Hang in there!

    “My son, my precious child,
    I love you and I would never leave you.
    During your times of trial and suffering,
    when you see only one set of footprints,
    it was then that I carried you.”

    — Footprints in the Sand

  3. I just had a thought. In 2007 Bianca needed to get 6 injections into her legs (one every second day) after she reacted to a previous chemo injection and once they have had an allergic reaction to this particular drug, you can’t get it again because it can be quite severe. The thing that worked a little bit for us is to put ice on her legs before the time. We drew a face where the injection would be given and then we put ice on. Also ask if Woutertjie can have paracetamol before and after like you would give to a baby when they get their injections. These are the things that helped us a bit. It is still sore, but less sore than without the ice. The numbing cream numbs the skin, but not the muscle bit in the leg.

    I also made mystery bags that Bianca could open after the injection and I made sure she was so very curious before the time. I made a number of them (one for each injection) and she could choose which one we took to the hospital.

    I also found it incredibly upsetting to have to watch her get injections like these.

  4. Suzanne,die trane loop oor my wange.Dit was en is vir my vrek moeilik as my kinders net vir hul gewone inspuitings moet gaan. Babatjie tyd moes my man my dogter vashou terwyl ek in die borsvoedhoekie gaan sit en wag met alles wat sussa wil he.
    Onthou net dat ons elke dag vir julle bid en nie net een keer ‘n dag nie!
    Ons bid vir jou en Wouter vir innerlike krag, vir vasbyt, vir sterk staan in geloof en vir baie ondersteuning.
    Ons bid vir Woutertjie vir volkome genesing. Ons glo dat die ‘gogga’ in sy hartjie weg is, want daar is net plek vir Liewe Jesus!
    Ons bid vir Carien wat nie mooi verstaan wat aan gaan nie.
    Ons bid vir julle hele familie, dat elkeen julle kan ondersteun en sterk staan wanneer julle dit nodig het.
    En ek sal met alle eerlikheid se dat daar nog so baie wonderwerke elke dag gebeur. Die statistieke is goed, maar God is in beheer. Ek glo dat hy al vir Wouter gesond gemaak het, ons moet net geduldig wees…
    Huil en gaan le as jy so voel, eet ‘n groot sjokolade of kyk ‘n soppy love story – ontlaai. Jy hoef en kan nie die hele tyd sterk wees nie. Jy’s net mens en after all ‘n kind – God se kind!
    Bid en dink baie aan julle

  5. Ek wou vroeer vandag gou vir jou ‘n boodskappie skryf, en soos Murphy dit wil he, het Nathan toe siek geraak.

    Ai Suzanne, partydae lees ek jou blog, en soos vandag sit ek met trane in my oe en ek wonder of ek rerig my boodskappie moet skryf.

    Dan wonder ek, skryf ek nie maar net for the sake of it nie? Ek het hieroor gewonder sedert vanmiddag, terwyl ek lekker lepel gele het met Nathan, en sy warm koors lyfie vasgehou het. Maar ne, ek skryf nie net for the sake of it nie.

    Ek skryf dat jy weet daar is mense wat elke dag aan jou dink. Mense wat elke dag vir jou bid. Vir daai dae wanneer jy rerig wonder hoekom God dit oor jou pad gebring het. Dae wat jy nie meer wat om te doen nie.

    So net om jou te laat weet, ek dink aan julle!


  6. i know words can not lighten the load but know that there are prayers at the feet of our Lord everyday for you and your family.
    He is with you and knows your heart even when you have no words

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