MONDAY, MARCH 12, 2012 8:04 PM, EDT
written by Heather Dalik
A happy surprise!
Today started out as a normal day, if you don't factor in the time change. Everyone in our house slept in so we were late, late, late. Apparently, I wasn't the only one running late today and clinic didn't seem to notice. After our vitals and blood draw, I had a super, exciting surprise.
A long while ago, you might remember I mentioned a book about a girl with Aplastic Anemia. Kathryn was eight when she was treated at Hopkins with the medications but no BMT, as she didn't have a match. Her Dad, Bill wrote a book about her journey. This book is a staple in our house. Someone reads it at least once a day. It is always around, on the sofa, on the table, in the playroom. She is also the only child we know who was young when she got Aplastic Anemia. Kathyrn has become our hero. I hoped one day I would get to meet Kathryn and her amazing family. I knew their 6 month Hopkins visit was coming up and had written on my long list of things to do - "email Carolyn (her Mom) and find out abt visit". I never seemed to remember to send that email when I was sitting at the computer. I am so lucky that Carolyn is reading my journals and knew we would be there at the same time - today!
Bill approached me "Is that Cora?" When he told me who he was, the tears started. He wasn't even shocked when I grabbed him in a hug! What a good guy! At clinic, you visit, get vitals, visit some more, get blood drawn, visit, get seen by your doctor. I was lucky enough to get to spend the majority of the morning talking to either Kathryn or Carolyn. It was a good thing I didn't know I would see them, because I came up with a million questions and I wasn't even prepared.
One thing I know for sure, Kathryn is a hero. She is an amazingly soft spoken and a super sweet girl. Cora took to her instantly (calling her Cassie). Kathryn proudly shared her blood counts with me, which have all almost returned to normal. She even showed me her tiny hickman scar (something I have been obsessing about with Cora because she has so many scars). Carolyn didn't even flinch when I threw out questions that have been paining me, worrying me, stressing me. She is a warrior too. I am most amazed at Carolyn's calm and inner peace. I hope as I continue to heal, some of that rubs off on me.
I also got to meet Kathryn's younger brothers, who would be perfect pals for Andrew. This is the kind of family I would love to be around, even if sickness was our bond. The best part was watching Cora tell Grace and Andrew about meeting Kathryn. She showed them the book and the picture I took of the two girls (I will post that). Meeting this family made my day, my week and maybe even my month!
Today was actually a full clinic day. We got Cora's 6 month blood stats back - her whole blood is 95% or greater donor. This means she is 95% or greater boy! Her lymphocytes are 92% donor. This number has risen slowly from 14% Cora to only 8% Cora. This means that the cells that are coming back are Andrew's. This is all very good news. At this point, Nancy told me it would be okay if some of Cora's marrow came back. Her disease has been wiped out of her bone marrow, her body restarted, so to speak. Nancy and I also talked long term for the first time. We talked about what other diseases we will be on the look out for. One of them being, skin cancer. If you know me, you know I am already nuts about putting sunscreen on the kids. Now my OCD will be justified, so pass the word on at the pool!
As Carolyn and I were finishing up our conversation, Nancy came looking for me. Cora's potassium levels were very high. "Don't leave", she said. Moment of panic, heart in throat, Ugh! Cora needed IV fluids and some meds to flush her liver and kidney's out. She was not a happy camper, missing her nap. I guess I have gotten cocky because I only had a few snacks. I used to go to clinic with a days worth of food, several movies, and other things to occupy Cora. I don't do that anymore. Luckily, we were able to score some mac and cheese by product for Cora to lunch on. We made it to the bus stop with 7 minutes to spare. I am blessed with some great friends because my favorite dinner was on my porch when I got home - chicken and dumplings.
Please continue to pray for all our friends. Some of them have rough roads ahead. We have two pals in the prep for bone marrow transplants and several who are struggling to lick their leukemia.
Be CORAgeous!
A long while ago, you might remember I mentioned a book about a girl with Aplastic Anemia. Kathryn was eight when she was treated at Hopkins with the medications but no BMT, as she didn't have a match. Her Dad, Bill wrote a book about her journey. This book is a staple in our house. Someone reads it at least once a day. It is always around, on the sofa, on the table, in the playroom. She is also the only child we know who was young when she got Aplastic Anemia. Kathyrn has become our hero. I hoped one day I would get to meet Kathryn and her amazing family. I knew their 6 month Hopkins visit was coming up and had written on my long list of things to do - "email Carolyn (her Mom) and find out abt visit". I never seemed to remember to send that email when I was sitting at the computer. I am so lucky that Carolyn is reading my journals and knew we would be there at the same time - today!
Bill approached me "Is that Cora?" When he told me who he was, the tears started. He wasn't even shocked when I grabbed him in a hug! What a good guy! At clinic, you visit, get vitals, visit some more, get blood drawn, visit, get seen by your doctor. I was lucky enough to get to spend the majority of the morning talking to either Kathryn or Carolyn. It was a good thing I didn't know I would see them, because I came up with a million questions and I wasn't even prepared.
One thing I know for sure, Kathryn is a hero. She is an amazingly soft spoken and a super sweet girl. Cora took to her instantly (calling her Cassie). Kathryn proudly shared her blood counts with me, which have all almost returned to normal. She even showed me her tiny hickman scar (something I have been obsessing about with Cora because she has so many scars). Carolyn didn't even flinch when I threw out questions that have been paining me, worrying me, stressing me. She is a warrior too. I am most amazed at Carolyn's calm and inner peace. I hope as I continue to heal, some of that rubs off on me.
I also got to meet Kathryn's younger brothers, who would be perfect pals for Andrew. This is the kind of family I would love to be around, even if sickness was our bond. The best part was watching Cora tell Grace and Andrew about meeting Kathryn. She showed them the book and the picture I took of the two girls (I will post that). Meeting this family made my day, my week and maybe even my month!
Today was actually a full clinic day. We got Cora's 6 month blood stats back - her whole blood is 95% or greater donor. This means she is 95% or greater boy! Her lymphocytes are 92% donor. This number has risen slowly from 14% Cora to only 8% Cora. This means that the cells that are coming back are Andrew's. This is all very good news. At this point, Nancy told me it would be okay if some of Cora's marrow came back. Her disease has been wiped out of her bone marrow, her body restarted, so to speak. Nancy and I also talked long term for the first time. We talked about what other diseases we will be on the look out for. One of them being, skin cancer. If you know me, you know I am already nuts about putting sunscreen on the kids. Now my OCD will be justified, so pass the word on at the pool!
As Carolyn and I were finishing up our conversation, Nancy came looking for me. Cora's potassium levels were very high. "Don't leave", she said. Moment of panic, heart in throat, Ugh! Cora needed IV fluids and some meds to flush her liver and kidney's out. She was not a happy camper, missing her nap. I guess I have gotten cocky because I only had a few snacks. I used to go to clinic with a days worth of food, several movies, and other things to occupy Cora. I don't do that anymore. Luckily, we were able to score some mac and cheese by product for Cora to lunch on. We made it to the bus stop with 7 minutes to spare. I am blessed with some great friends because my favorite dinner was on my porch when I got home - chicken and dumplings.
Please continue to pray for all our friends. Some of them have rough roads ahead. We have two pals in the prep for bone marrow transplants and several who are struggling to lick their leukemia.
Be CORAgeous!
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