SUNDAY, JANUARY 22, 2012 6:11 PM, EST
written by Heather Dalik
Don't you want to turn back time?
I was talking to a friend last week about how the last 6 months have passed without me even knowing. "Wouldn't you like to turn back time?", she asked. That question really got me thinking. Would I turn back time if I could? Of course, I would. I would love to erase all that Cora, Grace and Andrew have been through. But, doing so would erase all the amazing people we have met in the last 6 months. There are many people I have met in the last 6 months that I am so grateful for. There are many people I haven't met in the last 6 months that I am equally grateful for. I wouldn't want to erase them. The support of our doctors, nurses, community, friends, and strangers has been a force behind our sanity. I wouldn't want to erase any of that.
Last night my mind opened up and allowed me to see the first three days from the pediatrician to the ER. Most of this has been completely blocked and I couldn't share the story because I didn't have all the pieces. Here is what I remember -
We started out our afternoon at the library, watching a magic show. I remember how cute Cora was sharing her goldfish with another toddler. I remember watching her thinking, this is bad. Something is wrong with her.
At 5:30, I took Cora to the pediatrician mostly on instinct. Remember, she also had some very irregular bruises and dots on her belly had developed that day. They tried to check her blood counts with a quick test. She bled through band-aid after band-aid from a finger stick. I remember that her blood was purple. I remember turning to the nurse, saying "This is bad, isn't it". She knew and I knew she knew but she said "Let's just see what the test shows". The test showed her red and blood counts were low, very low. So low that the doctors decided it couldn't be right and we should go to St. Agnes for blood work. I know now that deferring us to St. Agnes, simply put the blame on someone else. (It is still unclear to me which doctor we saw. I know we didn't see our regular pediatrician but other than that, I still can't remember.) 30 minutes later Dr. Dada came in to tell me the worst. I remember she said it might be ITP or Leukemia. It might also be this very rare disease called Aplastic Anemia. I asked her what she thought it was and she said "I can't say for sure but I am leaning toward leukemia" Later, she told me I said "Whatever it is, we will fight it. We can do it." She was impressed with that! Ha, I say. I just remember feeling like someone was sucking the air out of me, like a rat stuck in a maze, like I just got off a Tilt a Whirl. There is no fighting going on!!
The next thing I did was call Melanie. When she and I talked about that night a few months ago, neither of us remembered much. I remember calling her. She lives a few doors down. Her phone number is just about the only one I have memorized (besides my parents and my Mom was out of town) and my cellphone was dead. I called her, asking her to pick up Jeff and take him to St. Agnes to get my car. Somehow he will get to Hopkins. My conversation with her went something like this.
Melanie - Why are you calling me from St. Agnes? Is it Andrew?
Me - It's Cora. Can you get Jeff and bring him here? (insert sobbing)
Melanie - What's wrong? Heather, what's wrong? (sheer panic in her voice)
Me - It's......(sobbing) We are being transported to Hopkins. She (sobbing) I spit out the word leukemia, choking on every single syllable.
Melanie - No, they are wrong. Not Cora. Okay, when Mike gets home, I will bring Jeff to the hospital.
Me - Don't tell Jeff, please.
My dear friend drove the entire way to St. Agnes with my husband and didn't tell him the doctors thought Cora had cancer. Because I know my husband, I simply told him her blood counts were off and we were going to Hopkins. I had to protect him. He had to hear it from me, in person where we could hold our little girl and cry.
What happened on Friday is still a blur.
On Saturday, I took Grace and Andrew to the last swim meet. My Mom stayed with Cora at the hospital. Stephanie set up this site that has become my lifeline. I remember not caring about the details of the site - color, pictures, password. I was numb. I don't remember much else of the swim meet but I two things stand out. As Andrew got ready for his last swim of the season, he turned to me and said "Mommy, I am swimming in Cora's blood. I am going to get the germs out." Little did we know how right he was. Then, there was Amy. While I was in the hospital on Thurs and Fri, I tried to bring into my memory as woman I met a few years ago. I could only come up with her first name. No last name, no email address, nothing. I knew, if I could find her, she would support me. As Grace was beginning her last swim, I turned to see who Grace was swimming against. I remember letting out a little "gasp". Amy was standing right next to me. I must be seeing things. Not even her big, floppy hat could hide her smile as I said "Do I know you?" Like and angel sent from God, she said "You do". In that moment, I knew our journey was going to be long and hard. I wanted to dissolve on the pool deck. I also knew that Amy would help me get through. She has been on a journey and she will help me get through.
The rest of the story goes as you know it. Within hours it was confirmed that Cora did not have ITP. A few hours later, it was confirmed she most likely did not have leukemia. I remember the doctors telling us, in this case, you wish for leukemia. It wasn't cancer but, as we would learn, something much worse. By Monday, we knew Cora needed a bone marrow transplant from a genetic matched sibling.
The real message here is the power of the mind. My open memory a sign that now, 6 months into the journey, my mind is ready for me to heal. My heart has been aching to heal but my mind wasn't ready. Getting my heart and mind connected has been a daily struggle, as anyone who has seen me cry at the grocery store will attest. I think I am finally ready for the next 6 months. Together, we will fight. We can do it.
Be CORAgeous!
Last night my mind opened up and allowed me to see the first three days from the pediatrician to the ER. Most of this has been completely blocked and I couldn't share the story because I didn't have all the pieces. Here is what I remember -
We started out our afternoon at the library, watching a magic show. I remember how cute Cora was sharing her goldfish with another toddler. I remember watching her thinking, this is bad. Something is wrong with her.
At 5:30, I took Cora to the pediatrician mostly on instinct. Remember, she also had some very irregular bruises and dots on her belly had developed that day. They tried to check her blood counts with a quick test. She bled through band-aid after band-aid from a finger stick. I remember that her blood was purple. I remember turning to the nurse, saying "This is bad, isn't it". She knew and I knew she knew but she said "Let's just see what the test shows". The test showed her red and blood counts were low, very low. So low that the doctors decided it couldn't be right and we should go to St. Agnes for blood work. I know now that deferring us to St. Agnes, simply put the blame on someone else. (It is still unclear to me which doctor we saw. I know we didn't see our regular pediatrician but other than that, I still can't remember.) 30 minutes later Dr. Dada came in to tell me the worst. I remember she said it might be ITP or Leukemia. It might also be this very rare disease called Aplastic Anemia. I asked her what she thought it was and she said "I can't say for sure but I am leaning toward leukemia" Later, she told me I said "Whatever it is, we will fight it. We can do it." She was impressed with that! Ha, I say. I just remember feeling like someone was sucking the air out of me, like a rat stuck in a maze, like I just got off a Tilt a Whirl. There is no fighting going on!!
The next thing I did was call Melanie. When she and I talked about that night a few months ago, neither of us remembered much. I remember calling her. She lives a few doors down. Her phone number is just about the only one I have memorized (besides my parents and my Mom was out of town) and my cellphone was dead. I called her, asking her to pick up Jeff and take him to St. Agnes to get my car. Somehow he will get to Hopkins. My conversation with her went something like this.
Melanie - Why are you calling me from St. Agnes? Is it Andrew?
Me - It's Cora. Can you get Jeff and bring him here? (insert sobbing)
Melanie - What's wrong? Heather, what's wrong? (sheer panic in her voice)
Me - It's......(sobbing) We are being transported to Hopkins. She (sobbing) I spit out the word leukemia, choking on every single syllable.
Melanie - No, they are wrong. Not Cora. Okay, when Mike gets home, I will bring Jeff to the hospital.
Me - Don't tell Jeff, please.
My dear friend drove the entire way to St. Agnes with my husband and didn't tell him the doctors thought Cora had cancer. Because I know my husband, I simply told him her blood counts were off and we were going to Hopkins. I had to protect him. He had to hear it from me, in person where we could hold our little girl and cry.
What happened on Friday is still a blur.
On Saturday, I took Grace and Andrew to the last swim meet. My Mom stayed with Cora at the hospital. Stephanie set up this site that has become my lifeline. I remember not caring about the details of the site - color, pictures, password. I was numb. I don't remember much else of the swim meet but I two things stand out. As Andrew got ready for his last swim of the season, he turned to me and said "Mommy, I am swimming in Cora's blood. I am going to get the germs out." Little did we know how right he was. Then, there was Amy. While I was in the hospital on Thurs and Fri, I tried to bring into my memory as woman I met a few years ago. I could only come up with her first name. No last name, no email address, nothing. I knew, if I could find her, she would support me. As Grace was beginning her last swim, I turned to see who Grace was swimming against. I remember letting out a little "gasp". Amy was standing right next to me. I must be seeing things. Not even her big, floppy hat could hide her smile as I said "Do I know you?" Like and angel sent from God, she said "You do". In that moment, I knew our journey was going to be long and hard. I wanted to dissolve on the pool deck. I also knew that Amy would help me get through. She has been on a journey and she will help me get through.
The rest of the story goes as you know it. Within hours it was confirmed that Cora did not have ITP. A few hours later, it was confirmed she most likely did not have leukemia. I remember the doctors telling us, in this case, you wish for leukemia. It wasn't cancer but, as we would learn, something much worse. By Monday, we knew Cora needed a bone marrow transplant from a genetic matched sibling.
The real message here is the power of the mind. My open memory a sign that now, 6 months into the journey, my mind is ready for me to heal. My heart has been aching to heal but my mind wasn't ready. Getting my heart and mind connected has been a daily struggle, as anyone who has seen me cry at the grocery store will attest. I think I am finally ready for the next 6 months. Together, we will fight. We can do it.
Be CORAgeous!
No comments:
Post a Comment