We have begun to see some of the changes they warned us about. His pupils are uneven, his balance is off, he is weakening. The pain seems to be under control. He is back on the chemo for now, but it does not appear to be having any effect on his cancer in a positive way that we can tell outwardly. We will have an MRI later this week. We both cried a bit this weekend watching him try to play baseball and falling over after a big swing. We rage at the heavens above wondering what kind of universe exists in which a little boy can lose so much in his little lifetime. We try to stay positive and hope, but the changes are coming very fast now. Even being away for four days with him we saw a drop in his strength and balance. One side of his face seems to have dropped,and one eye cannot open as much. We can only hope that we can keep him comfortable and playing and loving him as much as we can while he is still with us. Every hour seems precious at the moment. We check to see if he is breathing at night like we did when he was firstborn. There is a French poem that my dad had read at my mother's funeral that said "it is raining in my heart" Today our hearts are raining for our little guy and his brother. No child needs to learn life is unfair at such an early age. That things don't always work out, that all the prayers in the world may not save someone from suffering and dying. No child needs to learn that.
Hospice comes tomm to talk with us more and establish more services with us and him. We will utilize all they have to help this transition be as peaceful and loving as we can.
We continue to ask for prayers and a miracle.
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Danielle, all of us parents whose child has been diagnosed with this beast has questioned time and time again how this can happen to such pure little beautiful little children. As optimistic as we are from the very beginning, we all fear what the future holds.But we also know how important it is to make our little ones as happy as possible. It is so obvious that you and your husband are making every second for your son wonderful despite the cancer. As a Christian all I can offer you is what my husband and I have somewhat concluded, that God knows better, that He has a plan. I know we all hope and pray for the same plan, that our child will survive. But I don't believe your prayers are less important to God than mine. Maybe someday we will better understand. Maybe we shouldn't even try because in so many ways it makes so sense to us. But our children are so amazing brave, so strong, and teach us so many things. Hold on to the fact that your son is melting hearts everywhere. I have no doubt how special your son is.
I wish you some kind of peace through all of this.
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