Thursday, 22 March 2012

Just a brief (and angry) update

Today was an awful day, I am so fed up with this whole thing I just want to scream f*ck this, f*ck neuroblastoma, and F*CK what cancer is doing to my beautiful boy!!!!!!!  Apologies for language but there is no point in keeping this blog unless it's an honest record of what we are going through.

I turned my back on Oscar and Izzie last night for 2 minutes, the squealing started and when I ran in to see what was happening, it turns out Izzie had pulled Oscar's feeding tube out of his stomach through his nose.  They both look shocked, but especially Oscar.  I knew this would mean getting it inserted again which is a truely horrific experience, but what can I do, kids will be kids and I only wish we weren't having to deal with all this.

Back in hospital this morning to get bloods checked again, get an audiology (hearing) test, and to HOPEFULLY find out what is happening next.  I'm sure you are sick of reading that, but you want to be on this side of the fence waiting for that news, the wait is agonising.  So Oscar needed platelets, which I knew would mean most of today spent in hospital waiting for them to arrive.  We went down to the main RVH building to get his hearing test done, walking through all the looks of pity, people pointing and staring and making comments to each other in front of me.  I don't care I can take it, but when Oscar starts to notice and feel there is something "not normal" about him it is heartbreaking and makes me really angry.  I'm sure I would have looked if I was on the other side, but it's truely shocking how people act towards us sometimes.  Anyway.  I hope they all go home tonight and thank their lucky stars and hope they never walk in my shoes.

The audiology test also annoyed me, the doctor didn't seem to know what was wrong with Oscar or what we were there for, asking me in front of him what was wrong with him, did he have tumors and did they affect his hearing.  I said he has neuroblastoma but he needed further explanation, and "tumor" is one of those words I don't want said in front of Oscar, I don't believe any 3 year old needs to know "tumor" or "cancer" especially when it is in relation to themselves.  The test itself actually showed Oscar's hearing has been affected by the chemo, as were we told was likely to happen.  It looks like he is losing/has lost his ability to hear high pitched sounds.  For now.  Who knows what the rest of the chemotherapy will do.  And tough to have it confirmed to be happening.

Back over to the Children's hospital, got Oscar's platelet transfusion, then time to get the NG tube inserted through his nose.  This is the 3rd time, and it was particularly bad.  It took 3 attempts and a lot of force to get it done.  The nurses did a great job, but it goes against all natural instinct as a mum to forcibly hold your child down and restrain him while you let others do such painful things to him.  I hate it.  There was a lot of (actual) blood, sweat and tears, and now I will be afraid to turn my back on the kids at all incase this happens again.

I asked before I left if it was confirmed yet what was to happen next.  But it seems those discussions are still taking place.  I don't know who is to blame or what the hold up is, but I just wish they only knew what almost 5 weeks of no treatment and waiting to hear what direction our lives are going to be sent in does to us as parents.  Especially me.  I'm definitely starting to get anxious and just wish I could be told once and for all what is happening.  But for now, back to sitting by the phone waiting for that call.

3 comments:

  1. So so wish I had a magic wand and could make it all ok. You're the best parents any child could have and you are doing your best. All our love is with you xxxxxx Caroline and Paddy xxxxxx

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  2. Just let it all out, it also helps everyone have an understanding of what you are all going through. Shame the people in the hospital can't read this blog. Hang in there, and take a few deep breathes, and the rest will follow. Hope you hear something soon, waiting is the worst. Keeping you in our prayers and thoughts. Love to all. Sandra & Bill Baker and all the family.xxxx

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  3. Martina Miskelly25 March 2012 at 20:36

    Oh Leonna I wish I could make it all better for you all. You are so brave. You and your family have been through so much.I hope you hear soon what treatment Oscar will be given. You all are in my thoughts and prayers. Stay strong and take care. Martina.

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