Jul 30, 2013 - 9:57 pm
I posted before inquiring about xp11.2 translocation RCC. My 9-year-old boy was dx with this rare cancer. His left kidney was removed in April with other tumors in lymph nodes in tummy. He was on Sutent (12.5mg) for 2 months (4 weeks on, 2 weeks off). He has tumors in chest, stomach and neck now, all in lymph nodes. Today the CT result shows tumors growing bigger in chest and abdomen since last scan in May.
I can't breathe today and can't help crying before him. I'm blessed that he is a positive, energetic boy with great attititude about almost everything. But I feel so hopeless when doctors are still in a learning process of this type of cancer. He showed no side effect of Sutent at all, making me think if the dosage is enough. We see Cincinnati Children's and I sent his slides to Dana-farber, NIH, Memorial Slottering, etc for review and no one has an answer.
I just can't help thinking if I gave him wrong food or supplement to make his tumors bigger. If this has to happen in this family, I wish I can go into his body, take out those tumors and put them into mine. I take away the food he likes, make him drink the smoothies and juicing which he hates. But what else can I do? I feel so abandoned by God.
Life is too painful...