Monday = chemo day

Yip, it was that day of the week again.  Fortunately only Vincristine.  For those who don’t know yet, it is a quick chemo (15 minutes) with few side effects.  Meaning that nausea and lowered immunity aren’t the problems.  It seems that it has started affecting Boeta’s muscles though.  He walks OKish but runs really strangely and has lots of trouble getting off things.  I have to phone Cristina (the oncologist) tomorrow to find out if there is anything I should / shouldn’t do or let him do.  It freaks me out seeing my usually very active, very coordinated child like this.  No one warned me about this and if Lea didn’t write about it I wouldn’t have known.

Aside from that we are doing well.  Woutertjie was very willing to drive to hospital this morning but as we were walking towards the entrance he suddenly refused to go any further.  He kept on telling me that he was hungry but that we couldn’t get anything to eat in the hospital.  There are so many messages hidden in that. 

1.  He doesn’t want to be stuck in hospital again.

2.  He really doesn’t want to be stuck in hospital again.

3.  He knows that telling me that he is hungry will make me happy and will make me take him to get food.

4.  He is still such a baby.  And I love the fact that he is.

It took about 5 minutes of us standing on the sidewalk talking before I realised what the real problem was.  He refused to explain (wasn’t capable of explaining?) his concerns and I decided not to push him.  So there we were.  Eventually I clicked that he was enjoying the “outside life” and was scared of being “locked up” in hospital again.  So I told him that we were only going in for a little bit – we couldn’t sleep there becuase we didn’t pack any clothes for him.  He didn’t bite.  So then I asked if it would be OK if we just went inside and told them that we weren’t coming.  He agreed to that.  Once we were inside he wasn’t bothered by anything and the rest of the “visit” went without incident.

We shared a room with the Taylors.  Ethan is 5 years old and has nephroblastoma (cancer of the kidney).  He had his last chemo today before having a reassessment scan on Thursday.  He has been responding wonderfully – Cristina said that she can’t feel his tumour anymore.  Please say a prayer for Ethan and his family.  Soon after the scan he is going for surgery to remove his affected kidney but it will make it many times safer, easier and better if the tumour is completely gone before the operation.


2 Responses

  1. Suzanne, ek lees nog steeds elke “post” en bid elke dag vir julle. Jul bly in my gedagtes.
    Elke keer wanneer ek ‘n “situasie” het met Ankia (4 ), dink ek net aan jou. My kind is nie siek nie, daar is NIKS fout met haar nie – sy is net ‘n tipiese 4jarige en sy kry my soms onder. Dan gaan my hart so uit na jou. Daar is niks “normaal” met jul omstandighede nie. Woutertjie is ook net 4 en wil ‘n normale 4jarige se goed doen, maar tog is hy so siek. Ek weet werklik nie hoe jy dit reg kry nie. Daarom bid ek so gereeld vir julle, want ek glo dis seker net die krag van gebed wat jou elke oggend uit die bed kry. Die liefde en ondersteuning van familie en vriende.
    Weet dat daar daagliks baie gebede vir julle 4 uitgaan.
    Ek hoop Wouter se spiertjies versterk vinnig weer, sodat hy lekker kan hardloop,klouter en spring.

  2. I’m so glad that I was able to help you feel more prepared for this drug 🙂

    Bianca’s teacher suggested that they can organise occupational therapy for her funny running with this drug, but Bianca’s doctor is not concerned as it is really just the drug at this point in time. We’ve never been told not to do anything (except Bianca wasn’t allowed to swim in the beginning) and she even plays tennis.

    Some kids do get bone pain or something like that – we’ve never had that. Bianca seems to lose hair with this drug every so often and then her hair will thin quite a bit, but then not many kids get this side-effect from this drug.

    Hugs and prayers as always!!!!

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