Yes, Jeff and I have spent the last few weeks in a dark place. Words really cannot describe how we feel, but Jeff’s last post came as close as possible to doing that. Clearly, this is the worst experience any of us has ever had. Clearly, Jeff or I would happily change places with our precious boy. Without a doubt, the hardest part about all of this is watching our child hurt, knowing that he does not understand why the cure is so cruel, and realizing that this is going to continue for years of his life. Jeff’s previous post describes those feelings perfectly.
That being said, I believe our thoughts have power. I believe our thoughts are more important that our feelings. As tempting as it is to curl into a ball and let these feelings of overwhelming grief defeat us, we owe our “child of joy and light” (what my mom calls him) much more than that. I refuse to let this disease steal my hope. I refuse to let anger and grief steal anymore time or energy that would be better spent on helping Nico through this process. This process will cure him.
There is very little about any of this that I can control, but I can control the way I think and speak. I can control me, and that is about it. I sincerely believe that all of our positive words, thoughts and prayers have helped Nico. After all, we got Trisomy 4 and 10 - the most treatable cytogenetics! So, I am again calling on anyone and everyone to help us in this last step of determining the curability classification. Nico will undergo another bone marrow biopsy next Friday. At that time, Nico’s bone marrow must have LESS THAN 0.01% blast (cancer) cells in order to classify him as an average risk. If he is average risk, his likelihood for a complete cure improves, and his treatment will be less severe. So again, when you are praying, meditating, chanting, thinking or even just having a passing thought about our little man, if you could just focus on 0.000% (just to be safe) we would be forever grateful.
This is a fight. And anyone that knows me at all knows that fighting is what I do best. This fight, unlike many of my past, I will fight with positive words, positive actions, positive thoughts, gratitude and most of all my love for Nico. Thank you for helping us.
That being said, I believe our thoughts have power. I believe our thoughts are more important that our feelings. As tempting as it is to curl into a ball and let these feelings of overwhelming grief defeat us, we owe our “child of joy and light” (what my mom calls him) much more than that. I refuse to let this disease steal my hope. I refuse to let anger and grief steal anymore time or energy that would be better spent on helping Nico through this process. This process will cure him.
There is very little about any of this that I can control, but I can control the way I think and speak. I can control me, and that is about it. I sincerely believe that all of our positive words, thoughts and prayers have helped Nico. After all, we got Trisomy 4 and 10 - the most treatable cytogenetics! So, I am again calling on anyone and everyone to help us in this last step of determining the curability classification. Nico will undergo another bone marrow biopsy next Friday. At that time, Nico’s bone marrow must have LESS THAN 0.01% blast (cancer) cells in order to classify him as an average risk. If he is average risk, his likelihood for a complete cure improves, and his treatment will be less severe. So again, when you are praying, meditating, chanting, thinking or even just having a passing thought about our little man, if you could just focus on 0.000% (just to be safe) we would be forever grateful.
This is a fight. And anyone that knows me at all knows that fighting is what I do best. This fight, unlike many of my past, I will fight with positive words, positive actions, positive thoughts, gratitude and most of all my love for Nico. Thank you for helping us.
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