I think we are doing better. There are fewer days of despair and more days of hope. This is entirely because of Nico and in spite of Nico’s flawed parents. Nico is handling treatment better than we could have hoped. The seemingly most difficult part for him has been the days he has lumbar punctures (once a week this month), and he cannot eat or drink after midnight before the procedure. For some reason, and in spite of my very vocal protests, he is consistently scheduled in the afternoon and he spends those mornings sitting in front of his snack cupboard crying.
Nico does not even flinch when his port is accessed with a giant needle, and he rarely complains while being injected with blood products and chemo over long periods of time. Nico is much stronger and much braver than his parents. Somehow he is not a complainer in spite of his genes. Incredible.
The ALL list serv continues to be a blessing and a curse. A few nights ago, a mother posted about her own feelings of guilt. She admitted that she had wished her child had not been born rather than suffer for the rest of his life. I was compelled to respond to her because in the beginning I had the same thoughts. I felt that I had brought my child into the world only to be plagued and tortured. Nico is truly the greatest thing that Jeff and I have ever been a part of and I felt that I had taken this perfect being and ruined him. Somehow the leukemia was my fault, and I heard this other mother reiterating those old feelings. Her message helped me to recognize that I have traveled some down of this hard road because I can honestly say that I do not feel this way any more. I told her that hope had returned to me, and that I knew it would return to her too, even if it does not stay as long as we would like it to.
Of course, for all of the good experiences you have as a result of the list serv, you also read posts like one I read last night – A father asking to be removed from the list since he had lost his daughter (after years and years of treatment) and did not feel he wanted to be on the list anymore. These posts are incredibly hard. I foolishly clicked the link at the end of his post and read about his daughter’s life. The way she was diagnosed, the beginning of her treatment – I could have written those posts, as they were identical to Nico’s story. This little girl had a T-cell versus Nico’s B-cell, which does not have the same prognosis. But the bottom line is that leukemia struck both of them, and as we hear over and over, for every parent the statistics are either 100% or 0%. You are either cured or you are not.
I have to face this fear. I have to come to terms with the fact that my child has cancer, and honestly I know that I have not been able to do this yet. I know because I have not slept for more than a couple of hours at a time in weeks, when I do sleep I have nightmares, my mouth is full of canker sores and I am somehow fat in spite of existing on Excedrin migraine and coconut water. It seems self-indulgent to get a massage, go to yoga or even “talk” to someone, but I think the time has come because I cannot be there for Nico when I am sick and tired and when looking at his beautiful face hurts me.
Nico does not even flinch when his port is accessed with a giant needle, and he rarely complains while being injected with blood products and chemo over long periods of time. Nico is much stronger and much braver than his parents. Somehow he is not a complainer in spite of his genes. Incredible.
The ALL list serv continues to be a blessing and a curse. A few nights ago, a mother posted about her own feelings of guilt. She admitted that she had wished her child had not been born rather than suffer for the rest of his life. I was compelled to respond to her because in the beginning I had the same thoughts. I felt that I had brought my child into the world only to be plagued and tortured. Nico is truly the greatest thing that Jeff and I have ever been a part of and I felt that I had taken this perfect being and ruined him. Somehow the leukemia was my fault, and I heard this other mother reiterating those old feelings. Her message helped me to recognize that I have traveled some down of this hard road because I can honestly say that I do not feel this way any more. I told her that hope had returned to me, and that I knew it would return to her too, even if it does not stay as long as we would like it to.
Of course, for all of the good experiences you have as a result of the list serv, you also read posts like one I read last night – A father asking to be removed from the list since he had lost his daughter (after years and years of treatment) and did not feel he wanted to be on the list anymore. These posts are incredibly hard. I foolishly clicked the link at the end of his post and read about his daughter’s life. The way she was diagnosed, the beginning of her treatment – I could have written those posts, as they were identical to Nico’s story. This little girl had a T-cell versus Nico’s B-cell, which does not have the same prognosis. But the bottom line is that leukemia struck both of them, and as we hear over and over, for every parent the statistics are either 100% or 0%. You are either cured or you are not.
I have to face this fear. I have to come to terms with the fact that my child has cancer, and honestly I know that I have not been able to do this yet. I know because I have not slept for more than a couple of hours at a time in weeks, when I do sleep I have nightmares, my mouth is full of canker sores and I am somehow fat in spite of existing on Excedrin migraine and coconut water. It seems self-indulgent to get a massage, go to yoga or even “talk” to someone, but I think the time has come because I cannot be there for Nico when I am sick and tired and when looking at his beautiful face hurts me.
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