Hi
My 10 year old son was diagnosed in September 07. On the Sacrum (bottom of his spine and against his central nervous system). I related to your message entirely, I empathised completey.. It was like hearing me talk on the disease.
Tyler went from having an ache in his leg to cruches then onto a wheel chair before he was diagnosed. It took 8 doctors and 8 weeks to get to the bottom of what was happening. Until diagnosis he was eating panadol for the pain. (he has a high pain threshold). His prognosis was not good. Unfortunately they don't have much data/info for the sacrum so its thrown into the pelvic region data/info which the odds given were not good.
The medication balance was a nightmare because they were dealing with both soft tissue and bone. The accidents were extremely upsetting for him, I could change bed sheets 4 times in one hour. If he wasnt soiling the bed he was throwing up... but for him the saving grace was it hadnt spread yet.....
He now done cycle 8 and is nearly finished radiation.. the tumour has significantly reduced...The pain has gone and with that the medication, however within a week of giving up the medication he no longer was throwing up or having accidents....Im not sure if thats a coincidence or not..he went from wheel chair to cruches to hobbling and is now walking..Christmas has come and gone and we didnt notice. We had him home on the day but in hospital the day before and after..his counts are always too low between chemos.
Until 4 weeks ago we spent 3 weeks of every month in hospital. Its a lifestyle and impacts greatly on day to day. The disease is the controller which is hard to digest that you cannot do anything but appear to be strong around your child, my partner and I especially me have commented that we never want to make such life and death decisions again.The responsibilty is huge and hopefully with gods blessing we wont have to again for a long time.
We found that Aloe Vera Juice extremely helped Tyler, you can pick it up with any health shop..Check with the Dr first.
Someone once said to me when I was told about my son's disease, I said " Im not strong enough to cope with this" and the reply I got was
" you are strong enough otherwise it wouldnt be happening to you". You will find your reserve and you will find out who are good friends around you are. My prayers and thoughts are out there and I am sending out lots of loving energy for you.
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