Today was an anxious affair as we waited for results and the more time that went by the more time we had to speculate as to what might be!
Back in November after 11 weeks of Chemotherapy, Skye's disease was stable at best, but progressive in parts. This time, following Radiotherapy and High Dose Thiotepa, we have 'significant reduction'. This is incredibly positive news for us and we can now go forward with very cautious optimism.
We have been told that considering the extent of Skye's disease, this is the best that we could have expected at this stage. There was evidence of low grade uptake of the contrast dye, which could be the result of scar tissue from Radiotherapy, which is what we are hoping, but difficult to tell. We have another scan booked for the 22nd July, which will give us our next comparison. At this stage though, it is possible that the active tumour cells are no longer reproducing and in effect he would have been cured.
This result means that we can move forward to repeating the High Dose Thiotepa, which will now be delayed until the end of May due to Skye's slow recovery from the first course. Ironically, they believe he has coped remarkably well, and if it were not for his inability to feed, he would be home, but nutrition is such an important factor in prognosis, it is something we have to get right. His bloods are looking really stable and hasn't had to have any transfusions in almost two weeks. Well done the stem cells! So on the back of this news we should be really pleased.
What I am grappling with, is my ability to be 'happy'. When will I be able to be truly happy again? And if I am 'happy', should I be happy? Or will it be forever tinged with sadness? Skye has proved himself to be an unbelievable source of strength to both Sally and I, because he is so resilient, so courageous, so witty, and so funny that he has had us genuinely laughing! Therein lies a remarkable lesson for us all. I think we have to crack on and live! But live a life that is forever altered. I hope I never have to go through what he has endured these past 7 months. And again I am asking myself why! Why him? Why us? Why now? A time of his life, when he should be having an absolute ball, running around without a care in the world, he can't! Will we as parents, ever be able to come to terms with this.
But for now, we are ‘happy’, happy that we have a plan going forward, happy that we have Skye, and Jesse, and that we can treasure this precious life that we all get only one chance to live.