Thursday, November 6, 2014
Heartbeat
How many sleepless nights, my hand resting over his tiny beating heart while I beg it to keep going, keep beating little heart!
Friday, October 10, 2014
Flu shot fever
If not for a slight cry in his sleep, I may not have known that Kai had a fever of 102 following his flu shot today. 11:15pm and thanking God for cosleeping.
Chewable childrens Advil and extremely watered down Gatorade is hitting the spot for him and he should be dozing back off any second...
Wednesday, October 8, 2014
Enema before anorectal Manometry
"I don't want to do it,
Please no please no please no."
"Mommy, you're treating me like a bad guy."
"I want the test before this test to be the last test."
Thursday, June 26, 2014
Background
I am a mom. I have a husband and a house, We have a 4-year-old son who has Cancer. He is in remission. Maybe you think that means I'm okay. I'm so happy and overjoyed every minute. But it doesn't.
Remission isn't permanent. We have tests to make sure the Cancer hasn't come back. It came back once. But now we're in remission. I am terrified all the time. My son doesn't know that I am terrified all the time, what a way to grow up! Most of my friends and family don't know that I feel this way. Thank God. That would be awkward. No one would talk to me.
He has Neuroblastoma. We found out when he was 9 months old. He had 4 months of Chemo, then his first birthday. He is our only child. We would like to have more, but put it off during the hard times and are just getting to it now. After a year of nothing, just when we were tentatively tasting the briefest sweetness of a normal life, the Cancer came back. He had a surgery to remove most of it. I had thought it was over then. Right before it came back, I mean. I had let my guard down and smiled and waved to my fear in the rear view mirror. But it came back.
It wasn't his first surgery, but I hope it was his last. Now it has been 2 years. How relieved I must feel. How happy this is all behind us! No. Not falling for that again. I have now had the luxury/agony of enough free time to research. I am no longer monitoring a sick infant 24/7 for signs of infection, changing diapers and dressings, cleaning germs and vomit, juggling meds and appointments. I have had a chance to read. Worse, I have had a chance to feel.
When your every moment is filled with urgent business, even if it isn't the urgent business of being a wife/mother/nurse/housekeeper, you can't ponder the gravity of your situation. Once my situation calmed down... I couldn't believe I had survived it. My husband often remarks he doesn't know how I did what I did. At least he got to get out of the house for work. I counter, I get out of the house to the hospital all the time! A laugh. You need the laughs. If I can keep people laughing at my self-deprecating wit, they wont see the fear and pain just under the surface. They wont be uncomfortable around me and I wont be alone.
He is a happy kid. All smiles, all the time. Always has been. His determination and spirit were contagious, my saving grace during his illness. I would do almost anything to never hear him cry again. I'm sure any parent would say, of course, I feel that way too. I don't mean to imply that normal parents like hearing their kids suffer. But normal parents may not have ever seen their kids really suffer. May not have had to stand there, helpless, while their kids suffered, or even held them down. Betrayed them.
Maybe he remembers. Maybe he doesn't. Maybe he forgives me. Crying out in the hospital, and looking desperately into my eyes for salvation. But I couldn't offer that salvation. These tests needed to be done. So I helped them get the tests done faster. I looked into his eyes and apologized with my eyes as I held his legs down. If I broke, if I cried, I would be asked to leave the room so as not to upset him. So I seldom broke. I hope he forgives me.
If I weren't me. If I were a normal person with a normal kid with a normal past and a normal future, I might hear about someone in this position. A parent who almost lost their child to Cancer, but didn't. I might think, praise God. They're all right now! Good for them!
But that's not the whole truth. I am thankful every second of every day that I did not lose my son to Cancer. But we did lose something. Things don't just go back to normal. I'm not sure what normal is. I've never raised any other children. I'll never have those memories of milestones, that perfect little baby book. My son will always hate being held, whether he knows why or not. He has allergies no one has heard of. Chemo leaves lasting effects on just about every part of his still-developing body you can think of.
Hello new Dentist, will you check him for Chemo damage to his enamel? OK Neurologist, I will keep an eye on his walking and running. What, another hearing test? Oh and his heart has to be tested again, too? No, I don't think we need another bone marrow biopsy, thank you. Can't wait to see our new GI doctor about the digestion issues. Did I mention he might be sterile? All this and it could still come back. But we are some of the lucky ones. I know just how lucky we are. I thank God for it every day. Please, let us stay this lucky.
Remission isn't permanent. We have tests to make sure the Cancer hasn't come back. It came back once. But now we're in remission. I am terrified all the time. My son doesn't know that I am terrified all the time, what a way to grow up! Most of my friends and family don't know that I feel this way. Thank God. That would be awkward. No one would talk to me.
He has Neuroblastoma. We found out when he was 9 months old. He had 4 months of Chemo, then his first birthday. He is our only child. We would like to have more, but put it off during the hard times and are just getting to it now. After a year of nothing, just when we were tentatively tasting the briefest sweetness of a normal life, the Cancer came back. He had a surgery to remove most of it. I had thought it was over then. Right before it came back, I mean. I had let my guard down and smiled and waved to my fear in the rear view mirror. But it came back.
It wasn't his first surgery, but I hope it was his last. Now it has been 2 years. How relieved I must feel. How happy this is all behind us! No. Not falling for that again. I have now had the luxury/agony of enough free time to research. I am no longer monitoring a sick infant 24/7 for signs of infection, changing diapers and dressings, cleaning germs and vomit, juggling meds and appointments. I have had a chance to read. Worse, I have had a chance to feel.
When your every moment is filled with urgent business, even if it isn't the urgent business of being a wife/mother/nurse/housekeeper, you can't ponder the gravity of your situation. Once my situation calmed down... I couldn't believe I had survived it. My husband often remarks he doesn't know how I did what I did. At least he got to get out of the house for work. I counter, I get out of the house to the hospital all the time! A laugh. You need the laughs. If I can keep people laughing at my self-deprecating wit, they wont see the fear and pain just under the surface. They wont be uncomfortable around me and I wont be alone.
He is a happy kid. All smiles, all the time. Always has been. His determination and spirit were contagious, my saving grace during his illness. I would do almost anything to never hear him cry again. I'm sure any parent would say, of course, I feel that way too. I don't mean to imply that normal parents like hearing their kids suffer. But normal parents may not have ever seen their kids really suffer. May not have had to stand there, helpless, while their kids suffered, or even held them down. Betrayed them.
Maybe he remembers. Maybe he doesn't. Maybe he forgives me. Crying out in the hospital, and looking desperately into my eyes for salvation. But I couldn't offer that salvation. These tests needed to be done. So I helped them get the tests done faster. I looked into his eyes and apologized with my eyes as I held his legs down. If I broke, if I cried, I would be asked to leave the room so as not to upset him. So I seldom broke. I hope he forgives me.
If I weren't me. If I were a normal person with a normal kid with a normal past and a normal future, I might hear about someone in this position. A parent who almost lost their child to Cancer, but didn't. I might think, praise God. They're all right now! Good for them!
But that's not the whole truth. I am thankful every second of every day that I did not lose my son to Cancer. But we did lose something. Things don't just go back to normal. I'm not sure what normal is. I've never raised any other children. I'll never have those memories of milestones, that perfect little baby book. My son will always hate being held, whether he knows why or not. He has allergies no one has heard of. Chemo leaves lasting effects on just about every part of his still-developing body you can think of.
Hello new Dentist, will you check him for Chemo damage to his enamel? OK Neurologist, I will keep an eye on his walking and running. What, another hearing test? Oh and his heart has to be tested again, too? No, I don't think we need another bone marrow biopsy, thank you. Can't wait to see our new GI doctor about the digestion issues. Did I mention he might be sterile? All this and it could still come back. But we are some of the lucky ones. I know just how lucky we are. I thank God for it every day. Please, let us stay this lucky.
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