I don't need to be hit over the head or struck by lightening but I "heard' the sign. I get it and we are moving home. I don't know when we will move since we are taking things slowly. Later this week sits well with me - how about you? I heard there is going to be a party in our driveway (with everyone wearing germ masks!) Sorry - I know you are wondering but I don't want to share the sign in my journal. For all I know, your sister might be the nurse that unknowingly gave me the sign. Call me and I will gladly share the story.
Grace and Andrew are really worried that Cora will get sick again, not just with a cold but like she was when she was admitted into the hospital in July. We will pray that her body stays strong and fights infections.
One of our doctors outlined Cora's immune system status in terms everyone can understand, even Grace and Andrew. In 6 months, Cora will have 1/2 of an immune system. It will take a year or more for it to be back to full strength. Right now she has the immune system of a baby born at 20 weeks. Wow, that really brings it home.
On a happy note, Cora's counts continue to climb. She didn't need any platelets or blood today. Sometime in the next two weeks we will have a repeat bone marrow aspiration and that will be the first real glimpse into Cora's recovery. We will know if her body has accepted Andrew's marrow as her own or is fighting it. This will be a time of prayer. I will let you know the date as soon as I know.
Be CORAgeous!
Monday, September 26, 2011
Saturday, September 24, 2011
Prayers for Direction
So, today I am asking for something for me. I need direction and clarity for our next step. The move to transition went really well. Cora doesn't really need to be in the transition house. It has been suggested that we go home and I am considering this for a variety of reasons. Putting aside Cora's health, it is much harder than I thought it would be to run two houses. It is hard being Cora's sole caregiver with no other adults to interact with. Money is also a constant concern. Naturally, Jeff and the kids want us to come home.
I looked to our nurse today for some direction. She told me we were free to go home and there isn't really any reason we shouldn't go home, other than me being overwhelmed with running the house and taking care of Cora. You might remember that we technically didn't qualify for the housing (because we live so close) but there was an open apartment so we got it. Cora is doing well and staying infection free. If we go home, we will have the house on germ lockdown! I have also come to realize our home is more mold free, germ free, clean air, etc than the transition house.
I am a firm believer that something will happen to make it clear which decision is the right one. So, I am hoping my dear followers will help me find clarity and direction. Please pray for direction for our family.
I looked to our nurse today for some direction. She told me we were free to go home and there isn't really any reason we shouldn't go home, other than me being overwhelmed with running the house and taking care of Cora. You might remember that we technically didn't qualify for the housing (because we live so close) but there was an open apartment so we got it. Cora is doing well and staying infection free. If we go home, we will have the house on germ lockdown! I have also come to realize our home is more mold free, germ free, clean air, etc than the transition house.
I am a firm believer that something will happen to make it clear which decision is the right one. So, I am hoping my dear followers will help me find clarity and direction. Please pray for direction for our family.
20 Months Today!
Happy 20 month birthday, Cora! The 21rst of the month comes again with a little anxiety. We were admitted to Hopkins on July 21 and again on August 21. Today we are 8 weeks, (yes, only 8 weeks) into our journey. Admittedly, I was worried about our clinic appointment today. I fear infection, which I know will come. I fear GVHD (graft rejection) which we hope won't come. I fear the 21rst of the month because that has not been a good day for us the past two months.
Today was a good day and I will not fear the 21st again! Yesterday, our nurse told me to prepare for a long appointment as Cora would be needing platelets today. Everyone was shocked to see that her platelet count went up on its own - for the first time in 8 weeks! So did her white blood cells, red blood cells, and those famous ANC's. I am so tired and overwhelmed that I said "thank you" and ran out of the clinic. On the way home, I realized I had no idea what this potentially could mean. I called our pal Dr. Burke, who explained that this is another sign that the bone marrow is grafting. Yeah!
Keep your prayers coming that Cora's body stays strong and fights off infection. I believe prayers are being answered so keep up the good work.
Grace and Andrew are here tonight to celebrate our release from the hospital. We will have the cake from the hospital. The cutest thing ever is to see Cora so excited when Grace and Andrew arrive. Her feet jump up and down in a happy dance, screaming "Ace! An"
Today was a good day and I will not fear the 21st again! Yesterday, our nurse told me to prepare for a long appointment as Cora would be needing platelets today. Everyone was shocked to see that her platelet count went up on its own - for the first time in 8 weeks! So did her white blood cells, red blood cells, and those famous ANC's. I am so tired and overwhelmed that I said "thank you" and ran out of the clinic. On the way home, I realized I had no idea what this potentially could mean. I called our pal Dr. Burke, who explained that this is another sign that the bone marrow is grafting. Yeah!
Keep your prayers coming that Cora's body stays strong and fights off infection. I believe prayers are being answered so keep up the good work.
Grace and Andrew are here tonight to celebrate our release from the hospital. We will have the cake from the hospital. The cutest thing ever is to see Cora so excited when Grace and Andrew arrive. Her feet jump up and down in a happy dance, screaming "Ace! An"
Are you happy?
Once Cora realized what was happening today, there was no stopping her. She knew something special was happening because her door was decorated for the celebration. At first, she screamed and cried as we made trip after trip to the car. Then, her room for the last 31 days was empty. When they brought out her cake, I think she got it! We sang "Happy end of transplant to you!" and off we went. I could feel the electricity in Cora's body as I carried her thought the heavy door we came in through 31 days ago. "Bye-bye's, this (pointing in any direction but the way we came), bye-bye's" Our departure took a few extra minutes because of a medication mix-up but Cora's electricity grew as we headed down the elevator and to the doors.
Once in the apartment, she was a little scared and confused. I have been saying we would go to a new house for a little while, but it is hard to know what she understands. As Jeff was cleaning out the car, Cora settled in on my lap for a snuggle. She let out a huge sigh of contentment. I said "Are you happy?" "Uhhhuuhhh!", was her reply. That about sums up the day!
Once in the apartment, she was a little scared and confused. I have been saying we would go to a new house for a little while, but it is hard to know what she understands. As Jeff was cleaning out the car, Cora settled in on my lap for a snuggle. She let out a huge sigh of contentment. I said "Are you happy?" "Uhhhuuhhh!", was her reply. That about sums up the day!
Saturday, September 17, 2011
Preparing to leave
Preparing to leave our cozy hospital room is quite overwhelming. Beyond all the things we need to bring from our house, we have to prepare the kids. We haven't told Grace and Andrew yet because I feel like there is an infection looming. I know my girl and she isn't right. There is nothing to go on yet so we will just wait and see. The doctors told me today that an infection will happen at some point. Cora is doing better than 95% of bone marrow transplant patient so we should just celebrate today. If I am right though, our departure will be delayed 7-10 days.
I have been thinking that perhaps Cora is feeling so good that she has realized this isn't our life. Yesterday, her pal went home. Try explaining that to a 19 month old. Her door was decorated, thus is the custom when you have a success on the 8th floor. Cora loved playing with the decorations. Later in the evening, they started tearing the room down for cleaning. When we were out for our evening stroll, Cora noticed. "Ma, Maky? Night nights no?" I said "She is all gone. She went home." Every time we walked by her pals room, Cora said "Maky house" I have to wonder, does Cora know we have another house? Does she remember her bedroom? Or maybe she just feels empty because something is missing but she doesn't know what.
I started today telling Cora we are going home to another house, very soon. I can see she is trying to understand what I am saying. I should have taken pictures.
I just have to share this story about my sweet Grace. We were loaned an amazing book about a young girl with Aplastic Anemia. It is actual photos of her journey. Grace and Andrew had me read it to them over and over. They recognized the walls here at Hopkins and all the things that are the same as Cora's journey. I know they took so much comfort in learning about another family that is like us. Grace asked to take the book to school and shared the book with her class. The next day, she asked to take her stuffed duck with the central line so she could share how we care for Cora's central line. She captured the hearts of her classmates and teacher with her story. She even went so far as to share Cora's facebook page, which she memorized reading over my shoulder, saying to her friends "My Mommy needs your help" (note to self, third graders can read anything!!) This is the first time that Grace has opened up about what is going on with Cora and I am thrilled. Tonight, Grace asked if Cora was ready to go into transition housing. HOW did she know that, I asked Jeff? I now suspect Grace knows more than we realize. Remember, we have never told the children that Andrew's bone marrow was life saving for Cora.
Prayer requests for Cora - pray that I am wrong and there is no infection in the future. I suppose you could pray that if there is going to be an infection, get it over with while we are still in the hospital! Pray her counts continue to climb since they were down slightly today, which is normal. Pray that Grace and Andrew continue to find routine and peace in our upside down life.
I most likely won't post tomorrow or Sunday. We will have Jeff's family here to celebrate Andew's birthday aboard The Fearless, an urban pirate adventure on the waters of the Inner Harbor for true pirates! Thank you Cara for making Andrew's birthday special.
Be CORAgeous!
I have been thinking that perhaps Cora is feeling so good that she has realized this isn't our life. Yesterday, her pal went home. Try explaining that to a 19 month old. Her door was decorated, thus is the custom when you have a success on the 8th floor. Cora loved playing with the decorations. Later in the evening, they started tearing the room down for cleaning. When we were out for our evening stroll, Cora noticed. "Ma, Maky? Night nights no?" I said "She is all gone. She went home." Every time we walked by her pals room, Cora said "Maky house" I have to wonder, does Cora know we have another house? Does she remember her bedroom? Or maybe she just feels empty because something is missing but she doesn't know what.
I started today telling Cora we are going home to another house, very soon. I can see she is trying to understand what I am saying. I should have taken pictures.
I just have to share this story about my sweet Grace. We were loaned an amazing book about a young girl with Aplastic Anemia. It is actual photos of her journey. Grace and Andrew had me read it to them over and over. They recognized the walls here at Hopkins and all the things that are the same as Cora's journey. I know they took so much comfort in learning about another family that is like us. Grace asked to take the book to school and shared the book with her class. The next day, she asked to take her stuffed duck with the central line so she could share how we care for Cora's central line. She captured the hearts of her classmates and teacher with her story. She even went so far as to share Cora's facebook page, which she memorized reading over my shoulder, saying to her friends "My Mommy needs your help" (note to self, third graders can read anything!!) This is the first time that Grace has opened up about what is going on with Cora and I am thrilled. Tonight, Grace asked if Cora was ready to go into transition housing. HOW did she know that, I asked Jeff? I now suspect Grace knows more than we realize. Remember, we have never told the children that Andrew's bone marrow was life saving for Cora.
Prayer requests for Cora - pray that I am wrong and there is no infection in the future. I suppose you could pray that if there is going to be an infection, get it over with while we are still in the hospital! Pray her counts continue to climb since they were down slightly today, which is normal. Pray that Grace and Andrew continue to find routine and peace in our upside down life.
I most likely won't post tomorrow or Sunday. We will have Jeff's family here to celebrate Andew's birthday aboard The Fearless, an urban pirate adventure on the waters of the Inner Harbor for true pirates! Thank you Cara for making Andrew's birthday special.
Be CORAgeous!
Wednesday, September 14, 2011
Captain CORAgeous wins again!
On this, the 6th birthday of Captain CORAgeous, we were given an amazing gift of hope. At exactly 12:10 (I was watching the clock, read below to see why) Cora's doctors came to do rounds. Cora was just falling asleep so they asked to see me in the hall. I was totally annoyed because Andrew was born at 12:10. I planned to spend 12:10 reflecting on my brave son and his first 6 years.
I could never have been prepared for what they would tell me. One of the markers of bone marrow success is a rise in Cora's neutrophils, showing that Andrew's bone marrow is doing its job. The doctor started the conversation by talking about how great Cora has been doing, how the effects of chemo have been minimal, and how happy they are with her progress. I can hardly believe my ears when he says, "so, we need to talk about working you out of here. Have you thought about where you will go after here - home or transition housing?" Uumm, excuse me, do you have the wrong patient? Apparently, Cora's neutrophils have already started going up. Yesterday, they were 102 and today they are 420. This indicates Andrew's bone marrow is doing its job!
All this on the same day and at the same time that we were blessed with Captain CORAgous! It gets better though - my lunch was delivered as I was talking to the doctors. I took the tray from sweet Eunice and thought, what is that smell? Whatever, I was lucky to be holding the tray without dropping it at that moment. When I came into our room and sat down to eat lunch and share our news with you, my turkey sandwich wasn't turkey. It was TUNA FISH! (Oh, I just heard my sister, Connie and Lee Ellen gasp) Tuna fish, which I hate, is a symbol of my grandmothers legacy. Tuna fish was wrongly delivered to my room, at the exact moment of Andrew' birth and Cora's rebirth. I ate the tuna fish, without complaining, just for Mommom.
So, today we will celebrate Andrew and a glimmer of hope for Cora. Her risk of life threatening infection is still very, very high. We haven't even started to talk about GVHD (rejection of the bone marrow) but we know that the bone marrow has started to do its job. We have a long rollercoaster ahead but we have climbed the first hill.
I could never have been prepared for what they would tell me. One of the markers of bone marrow success is a rise in Cora's neutrophils, showing that Andrew's bone marrow is doing its job. The doctor started the conversation by talking about how great Cora has been doing, how the effects of chemo have been minimal, and how happy they are with her progress. I can hardly believe my ears when he says, "so, we need to talk about working you out of here. Have you thought about where you will go after here - home or transition housing?" Uumm, excuse me, do you have the wrong patient? Apparently, Cora's neutrophils have already started going up. Yesterday, they were 102 and today they are 420. This indicates Andrew's bone marrow is doing its job!
All this on the same day and at the same time that we were blessed with Captain CORAgous! It gets better though - my lunch was delivered as I was talking to the doctors. I took the tray from sweet Eunice and thought, what is that smell? Whatever, I was lucky to be holding the tray without dropping it at that moment. When I came into our room and sat down to eat lunch and share our news with you, my turkey sandwich wasn't turkey. It was TUNA FISH! (Oh, I just heard my sister, Connie and Lee Ellen gasp) Tuna fish, which I hate, is a symbol of my grandmothers legacy. Tuna fish was wrongly delivered to my room, at the exact moment of Andrew' birth and Cora's rebirth. I ate the tuna fish, without complaining, just for Mommom.
So, today we will celebrate Andrew and a glimmer of hope for Cora. Her risk of life threatening infection is still very, very high. We haven't even started to talk about GVHD (rejection of the bone marrow) but we know that the bone marrow has started to do its job. We have a long rollercoaster ahead but we have climbed the first hill.
Tuesday, September 13, 2011
Don't tell me no!
I am sure all our supporters will get a kick out of this story. Yes, I am still the Heather you know and love, even though my daughter is sick. Some days I don't know if I ate or took a shower. Then, someone wrongs my kid and the old me kicks in! I contacted all the organizations that I was told we don't qualify for - beads of courage, super sibs, summer camps and make a wish. Guess what - our social worker was wrong! wrong! wrong! (I secretly hope she is reading our blog and knows how wrong she was.) I have applied for Super Sibs and ordered more beads of courage. We don't qualify for Make a Wish because of Cora's age but that is okay. I know she would ask for "Mouse" and I am not up for that trip anytime soon. It just goes to show, you should never take NO for an answer.
So many of you offered to send Grace and Andrew cards and notes. I would still love if you did that because Super Sibs is once a month. My kids love getting mail! Grandma and Poppop can attest to that.
Please use our post office box -
Cora Dalik Fund
c/o Grace or Andrew Dalik
po box 333
Linthicum, MD 21090
Cora had a great day yesterday and is sort of fussy today. Nothing makes her happy but I am getting through the day. Tonight Jeff and I will switch so I can go to back to school night. I can't wait to see Grace and Andrew's classrooms and hear about what they do during the day. Tomorrow Jeff, Grace, Andrew and I will be at our house together for the first time in almost a month. Captain CORAgeous will celebrate his 6th Birthday!
So many of you offered to send Grace and Andrew cards and notes. I would still love if you did that because Super Sibs is once a month. My kids love getting mail! Grandma and Poppop can attest to that.
Please use our post office box -
Cora Dalik Fund
c/o Grace or Andrew Dalik
po box 333
Linthicum, MD 21090
Cora had a great day yesterday and is sort of fussy today. Nothing makes her happy but I am getting through the day. Tonight Jeff and I will switch so I can go to back to school night. I can't wait to see Grace and Andrew's classrooms and hear about what they do during the day. Tomorrow Jeff, Grace, Andrew and I will be at our house together for the first time in almost a month. Captain CORAgeous will celebrate his 6th Birthday!
Monday, September 12, 2011
Cruise with us!
I’ve gotten a lot of questions about why we are attempting to raise so much money. “Don’t you have health insurance?” I wanted to take a minute to explain the situation and yes, ask for your support one last time. As you may know, Jeff and I are small business owners. This means that, while we do have health insurance, it doesn’t have all the “bells and whistles” that a typical, corporate or county insurance has (sort of makes me wish I was still teaching!). Getting affordable coverage is, quite frankly, one of the only downfalls of being a small business owner. After adding up the facts with our case worker, we can expect $30,000 - $50,000 out of pocket costs. This will not include the transitional housing that we may have to go to which is not covered by insurance at all! When you couple that with the fact that I am no longer able to work, and the fact that we have had to close the bike shop additional days so that I can see the big kids, it really becomes an overwhelming financial situation.
Our yard sale was successful. Our bracelets flew off the shelves. We have had numerous generous donations. But we wanted to have one big event. An event that could raise a significant amount of money, be a fun night out with all our friends, and bring everyone together to celebrate the miracles that have transpired with Cora’s treatment.
I had a friend of a friend contact me and offer to put together this event because she knew how to do it and felt compelled to help. She is one more angel in my growing list of godsends. I am very grateful to her because we certainly didn’t have the resources nor the connections to pull off such a great event.
The event is the Cruise for Cora. A sunset cruise around the inner harbor, it will be really lovely. We will have a silent auction. We need help gathering silent auction items too – you can contact Kristin Mowry at 410-804-5171 if you have something to donate or want to join Team Cora in soliciting donations. You can also post inquiries on Cora's facebook page and someone will get back to you.
We are selling electronic tickets (we did this to cut down on the cost and time of printing physical tickets). Tickets can be purchased at: http://becorageous.blogspot.com/p/upcoming-events.html. I am very excited for this cruise and I hope you all will be too. Oh, and not to worry, we promise to have another event centered around Cora's biggest supporters - the kids.
I also wanted to let you know that Cora had another wonderful day with Daddy. She was more tired today than yesterday and look a few naps, which is so unusual. We are slowly seeing the effects of chemo creep in. Jeff says her hair is falling out fast but she isn't bald yet. I am holding out hope that she keeps doing well so keep praying!
Be CORAgeous!
Saturday, September 10, 2011
Hair today and gone tomorrow
You guessed it - Cora's hair is falling out. Last night I thought she looked a little thin on one side of her head. I examined her crib, found no hair and decided I must be making it up. We were out for our evening stroll around the floor. Cora was relaxing in her little tykes riding car, feet up, fingering her curls. All of the sudden, she has a handful of hair in her hand. "MMAAA, hair!" Needless to say, it would have been priceless if it hadn't been so emotional. The look on her face when she had that handful of hair in her hand, was hysterical but I promptly started crying. I took the hair from her, did the Mommy "dust off", and started talking about the wall decorations. Cora forgot. I cried.
The nurses here are wonderful. One of them noticed me crying and without talking, took the hair from my outstretched hand. She said, I will meet you in your room. Together, (and without talking) we tied off the remaining curls and cut them off. Grace will be thrilled to hear Cora has a wedge haircut just like her big sister. I have Cora's curls and they will go in her baby book as her first haircut. Very emotional!
Cora has been really fussy today. I can tell the effects of chemo are kicking in. She wants to eat but has sores in her mouth. She is tired but not tired enough to sleep. She wants to be held but she wants to be left alone.
Please pray that the effects on Cora's body are minimal. We also need to add to our daily prayer, thoughts to keep the infections away. Her blood counts will be dropping, putting her at the highest risk of infection. As we start to track her counts, I will let you know. Counts are taken every day and will go up and then down. When they stabilize in 3-4 weeks, we know we are almost there.
Enjoy the sunshine this weekend. I can't wait to get outside with the big kids.
Be CORAgeous!
The nurses here are wonderful. One of them noticed me crying and without talking, took the hair from my outstretched hand. She said, I will meet you in your room. Together, (and without talking) we tied off the remaining curls and cut them off. Grace will be thrilled to hear Cora has a wedge haircut just like her big sister. I have Cora's curls and they will go in her baby book as her first haircut. Very emotional!
Cora has been really fussy today. I can tell the effects of chemo are kicking in. She wants to eat but has sores in her mouth. She is tired but not tired enough to sleep. She wants to be held but she wants to be left alone.
Please pray that the effects on Cora's body are minimal. We also need to add to our daily prayer, thoughts to keep the infections away. Her blood counts will be dropping, putting her at the highest risk of infection. As we start to track her counts, I will let you know. Counts are taken every day and will go up and then down. When they stabilize in 3-4 weeks, we know we are almost there.
Enjoy the sunshine this weekend. I can't wait to get outside with the big kids.
Be CORAgeous!
Today I will eat...
COOKIES! I am finally hungry and today, tomorrow and the next day I will eat homemade cookies. Luckily, I have an amazing baker friend who brought over homemade cookies, within hours of me mentioning I was craving them. All the food here at the hospital is so processed, so bland, so cold. So for the next few days, I will eat cookies. Cookies and peanutbutter, cookies and cheese, cookies and carrot sticks. Today I am grateful for cookies!
Cora had another uneventful night and day so far. Today is day 7, post bone marrow. We should see her being to feel bad right around now. Again, we will wait and pray the effects are minimal.
Someone suggested I check into Super Sibs, a program for the siblings of sick children. I asked about it today and it sounded so wonderful. Siblings are sent care packages with notes and cards. I know how much my kids love getting mail so this sounds like something they would love. I excitedly filled out my application and turned it right in to our social worker. BAM! (literally heard the door slam) "oops, Cora doesn't have cancer. Grace and Andrew won't be approved." Really?? As if to say, just because Cora has another, very rare, life threatening illness, our journey isn't valid. (Trust me, I just figured out where my energies are going to go when this is all over. I am going to change the system!)
So, I got to thinking, why couldn't our "village" create our own Super Sibs program. Trying to keep it simple, our supporters could mail Grace and Andrew notes of encouragement, cards, pictures drawn by your kids. We could use our post office box, which gets checked each day. I am open to thoughts and suggestions so share what you are thinking as I put this together.
Be CORAgeous!
Cora had another uneventful night and day so far. Today is day 7, post bone marrow. We should see her being to feel bad right around now. Again, we will wait and pray the effects are minimal.
Someone suggested I check into Super Sibs, a program for the siblings of sick children. I asked about it today and it sounded so wonderful. Siblings are sent care packages with notes and cards. I know how much my kids love getting mail so this sounds like something they would love. I excitedly filled out my application and turned it right in to our social worker. BAM! (literally heard the door slam) "oops, Cora doesn't have cancer. Grace and Andrew won't be approved." Really?? As if to say, just because Cora has another, very rare, life threatening illness, our journey isn't valid. (Trust me, I just figured out where my energies are going to go when this is all over. I am going to change the system!)
So, I got to thinking, why couldn't our "village" create our own Super Sibs program. Trying to keep it simple, our supporters could mail Grace and Andrew notes of encouragement, cards, pictures drawn by your kids. We could use our post office box, which gets checked each day. I am open to thoughts and suggestions so share what you are thinking as I put this together.
Be CORAgeous!
Wednesday, September 7, 2011
Prayers are being answered
Every day I think that this will be the day when Cora starts feeling bad. Today wasn't that day either. Today she was fussy times (which sent our favorite doctor running for cover!) but nothing like what has been described to me. Could we be THAT lucky? I doubt it so keep praying that the effects of chemo and the bone marrow transplant are minimal.
We had another quiet, rainy day. The view of the city from the 8th floor is amazing, even in the rain. Cora loves to look out the window and says "rain". I wondered today if she is missing going outside. She doesn't ask to throw the ball with the "woof" anymore so I guess she is getting used to the indoor life. You know what else I noticed today - there are no bugs on the Oncology floor. Not even on little stink bug or gnat. I guess bugs weren't invited to this party.
Cora is also starting to talk more and tell me what she needs. Her voice is so cute when she says "peas Mommy" and "tank you". It melts your heart! I would love to get rid of the word "Elmo", her new favorite guy. We spend many hours a day snuggled up, watching the furry guy.
Thank you again to everyone who is praying for Cora. Our message is reaching far and wide. Tonight, could you also pray for all the children and families we spend our days with. I am learning that everyone has a story. Although the stories are different, the emotion is the same.
We had another quiet, rainy day. The view of the city from the 8th floor is amazing, even in the rain. Cora loves to look out the window and says "rain". I wondered today if she is missing going outside. She doesn't ask to throw the ball with the "woof" anymore so I guess she is getting used to the indoor life. You know what else I noticed today - there are no bugs on the Oncology floor. Not even on little stink bug or gnat. I guess bugs weren't invited to this party.
Cora is also starting to talk more and tell me what she needs. Her voice is so cute when she says "peas Mommy" and "tank you". It melts your heart! I would love to get rid of the word "Elmo", her new favorite guy. We spend many hours a day snuggled up, watching the furry guy.
Thank you again to everyone who is praying for Cora. Our message is reaching far and wide. Tonight, could you also pray for all the children and families we spend our days with. I am learning that everyone has a story. Although the stories are different, the emotion is the same.
Andrew is amazing!
Captain CORAgeous, saving the world one sister at a time! What an amazing boy he is. He was able to go back to school today and made it through the whole day! I told him someone would come get him around 1:00 because I honestly didn't think he would make it through the day. This morning he said to Jeff "Can I stay all day if I want? Isn't that what the other kids do?" We relied on his teacher to let us know if he needed to come home. He had a great day and we are thrilled. Remember, his doctor told me he would miss most of this week.
Cora had another uneventful day. In the next day or so, she will start to feel bad, her hair will fall out and she will stop eating. I am cherishing the happy days. Right now she is in her crib singing the songs we sang today and clapping happily. Today we counted to five and spelled her name, all the things a normal toddler would do on a rainy Monday. If I peel the back off one more foam sticker, I might go nuts though. But wait until you see her art! She also got to take her first real bath in about a week. She was off her iv pole for an hour this morning, which made her really happy.
Thank you to everyone for your support, love and prayers. Someone commented in the guest book that so many people are praying for us - people we haven't even met. I hope one day we get to meet all the people who have prayed, wished, sent positive energy and kept our village together.
Cora had another uneventful day. In the next day or so, she will start to feel bad, her hair will fall out and she will stop eating. I am cherishing the happy days. Right now she is in her crib singing the songs we sang today and clapping happily. Today we counted to five and spelled her name, all the things a normal toddler would do on a rainy Monday. If I peel the back off one more foam sticker, I might go nuts though. But wait until you see her art! She also got to take her first real bath in about a week. She was off her iv pole for an hour this morning, which made her really happy.
Thank you to everyone for your support, love and prayers. Someone commented in the guest book that so many people are praying for us - people we haven't even met. I hope one day we get to meet all the people who have prayed, wished, sent positive energy and kept our village together.
Sunday, September 4, 2011
Another Quiet Day
Another quiet day - almost has me worried about what is coming. Cora was pretty happy today and after a morning on the couch, Andrew returned to the boy we know and love. I was even able to take the kids over to Rachel's (our beloved babysitter) to celebrate her 21rst birthday. Happy Birthday Rachel! After that friends came over to get my laptop all set up for scrapbooking. It was really nice to see Grace and Andrew playing with other children, happy, almost normal.
Just like greiving the loss of a loved one, there is an emotional process for what we are going through. Today, I cleaned out the garage (which is better than therapy!) and while I cleaned, I started to reflect on the events of the last 6 weeks. There are parts I don't remember. I don't remember calling Cora's Godmother or my mother. I don't remember all the details, the blood counts and medicines of the first 8 days. I don't remember hearing the diagnosis from the doctors. I don't even remember who the doctor was that told me the diagnosis. I am starting to put the pieces together so don't be suprised if I ask you a crazy question that I should know the answer to.
All this reflection brought me to realize that I need to say thank you to a lot of people. I think the biggest thank you needs to go to my Mom and Howard who have been at my disposal 24 hours a day, 7 days a week. To all the people keeping our bellies full - thank you. Everyone helping me with odd jobs so that I can spend time with the kids - thank you. Thank you to my sister, Suzanne and James who have taken on fundraising as a full-time job. That brings me to my last thank you for tonight. Thank you to everyone who has donated money to help pay Cora's medical expenses. Jeff and I haven't really gotten our heads around the tremendous expense in front of us, but many of you have. We are extremely grateful for every penny you have donated. Oh - and thank you to Simone, Cliff and all our bike shop employees. Without you, Jeff and I wouldn't be able to be in two places at once.
Be CORAgeous!
Just like greiving the loss of a loved one, there is an emotional process for what we are going through. Today, I cleaned out the garage (which is better than therapy!) and while I cleaned, I started to reflect on the events of the last 6 weeks. There are parts I don't remember. I don't remember calling Cora's Godmother or my mother. I don't remember all the details, the blood counts and medicines of the first 8 days. I don't remember hearing the diagnosis from the doctors. I don't even remember who the doctor was that told me the diagnosis. I am starting to put the pieces together so don't be suprised if I ask you a crazy question that I should know the answer to.
All this reflection brought me to realize that I need to say thank you to a lot of people. I think the biggest thank you needs to go to my Mom and Howard who have been at my disposal 24 hours a day, 7 days a week. To all the people keeping our bellies full - thank you. Everyone helping me with odd jobs so that I can spend time with the kids - thank you. Thank you to my sister, Suzanne and James who have taken on fundraising as a full-time job. That brings me to my last thank you for tonight. Thank you to everyone who has donated money to help pay Cora's medical expenses. Jeff and I haven't really gotten our heads around the tremendous expense in front of us, but many of you have. We are extremely grateful for every penny you have donated. Oh - and thank you to Simone, Cliff and all our bike shop employees. Without you, Jeff and I wouldn't be able to be in two places at once.
Be CORAgeous!
Saturday, September 3, 2011
An Easy Day - Sort Of
Jeff spent the day with Cora at the hospital. She had a low key day and was mostly easy to please. I was home with Andrew. He was miserable this morning but perked up at the sight of Uncle James this afternoon. This evening, he is a new child. I took him back to Hopkins this afternoon and he got the large bandages off. His incisions look good. They are about the size of a medium nail head. He told me today it feels like someone punched him really hard in the hip. Being a hero isn't easy, he told me.
Last night when we were leaving the hospital I said to Andrew "You know, a hero like you should be taken home in a limo." Silence... "No Mommy, a race car". Andrew decided last night he wants his hero present to be a ride in a real race car. Does anyone know a race car driver?
By the way, who thinks the Grand Prix in Baltimore is a good idea!?! Do you have an idea what it is doing to our drive time to Hopkins?
Next week we will start to see the effects of chemo on Cora. This will also be when she is at most risk of infection. Please continue to pray that her body accepts the bone marrow and fights off infection.
Be CORAgeous!
Last night when we were leaving the hospital I said to Andrew "You know, a hero like you should be taken home in a limo." Silence... "No Mommy, a race car". Andrew decided last night he wants his hero present to be a ride in a real race car. Does anyone know a race car driver?
By the way, who thinks the Grand Prix in Baltimore is a good idea!?! Do you have an idea what it is doing to our drive time to Hopkins?
Next week we will start to see the effects of chemo on Cora. This will also be when she is at most risk of infection. Please continue to pray that her body accepts the bone marrow and fights off infection.
Be CORAgeous!
Cora's New Birthday - September 2, 2011
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Andrew's bone marrow prepared and ready for Cora.
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Receipent Name: Dalik, Cora
Donor Name: Dalik, Andrew
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| Cora eating a granola bar, having some ice water, watching Elmo, and receiving a life saving bone marrow transplant. Modern medicine is truly amazing! |
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| Nurse taking Cora's vitals. |
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| Big sister Grace and Daddy |
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| Andrew (AKA Captain CORAgeous) after recovery. The family got to reunite in Cora's room and big sister Grace promptly gave him his care package. |
Update from Suzanne
Hi friends, it’s Suzanne, I'm posting an update for Heather and Jeff. Andrew's surgery went well, they harvested enough bone marrow for Cora and they began administering it to her at 5:11 pm. There was a little stress when he woke up from the anesthia, but I will let Heather fill you in on that. It was rather anti-climatic, the nurses brought in the bag of bright red liquid, hooked it up, and began administering it to her. It was so profound and yet seemed rather routine. We sat in amazement as Cora ate a granola bar, had some ice water, watched Elmo, and had a life saving bone marrow transplant.
It is now finished (at 9pm), she officially has Andrew's marrow swimming in her little body. Heather told me that if Cora is tested for gender via a blood test, she will test as a boy. Modern medicine is truly amazing.
When I was at the hosptial Andrew was reunited with the family. Grace and I made a care package for him today. It had a movie, a car, and lots and lots of candy. Grace made him a card. It was one of the sweetest things I witnessed today, seeing his big sister stand as he examined our care package. And he was so grateful, he said in this sweet voice, "Thank you Grace." He was happily drinking Sprite and watching movies when I left.
Andrew is home now. He will have to go back to the hospital tomorrow and have his dressings changed. We will post updates as we have them.
Thank you all for your love and support.
It is now finished (at 9pm), she officially has Andrew's marrow swimming in her little body. Heather told me that if Cora is tested for gender via a blood test, she will test as a boy. Modern medicine is truly amazing.
When I was at the hosptial Andrew was reunited with the family. Grace and I made a care package for him today. It had a movie, a car, and lots and lots of candy. Grace made him a card. It was one of the sweetest things I witnessed today, seeing his big sister stand as he examined our care package. And he was so grateful, he said in this sweet voice, "Thank you Grace." He was happily drinking Sprite and watching movies when I left.
Andrew is home now. He will have to go back to the hospital tomorrow and have his dressings changed. We will post updates as we have them.
Thank you all for your love and support.
Friday, September 2, 2011
Bean
The bean is the origin of all things.
Bone marrow is the start of life.
Please pray for our Cora Bean today as she celebrates a new birthday. (I am really glad I don't have to go through labor and delivery again!)
Be CORAgeous!
Bone marrow is the start of life.
Please pray for our Cora Bean today as she celebrates a new birthday. (I am really glad I don't have to go through labor and delivery again!)
Be CORAgeous!
Thursday, September 1, 2011
Moving on up!
Those that know me, know I learned from my mother how to sing (Too bad I wasn't blessed with a good voice). There is a song for every occasion and my mother is just the one to bolt out some obscure nursery rhyme or show tune. Today, I can't seem to get the theme song from the 70's show "The Jeffersons" out of my head. "Were moving on up to the east side, to a delux apartment in the sky. Moving on up, to the east side, we finally got a piece of the pie". Actually, today we moved to the west side - we finally got into a big room with a view.
Our amazing nurse Alex came in early this morning and said "I had good news and bad". Deep breath, swallow, hit me with the news. "The good news is you are moving to a big room, the bad news is you have to move now" So, there Cora and I are doing our happy dance in our pj's! We even got to take our new fridge to the big room. Actually, Cora was totally freaked out about the move and keeps asking to go back to the old room. Oh well, I celebrated the move all day. What a difference a little more space makes!
Tomorrow is bone marrow transplant day. The day will look something like this - wake up, coffee, shower, wait, wait, wait. Andrew will go into pre-op at 9:45 and surgery at 11:30. The bone marrow will go in Cora's central line about 3 hours later and take no longer than 4 hours to go in. Sort of anticlimactic, given that this is a life saving procedure. I will go home with Andrew to help him with his recovery. He will be in pain and get to watch lots of movies.
After that, the waiting game begins. We will need lots of prayers that Cora's body doesn't get any infections. There are things to worry about that change with each week and I will keep you posted on that. For now, I am asking everyone to pray that the effects of chemo are minimal for Cora. She will start feeling really bad early next week. We are going to spend some time together tomorrow as a family, enjoying our feisty toddler.
I will do updates on Andrew when we get back to the room tomorrow.
Wear your Be CORAgeous t shirt tomorrow to support Cora. If you haven't gotten a shirt, wear red - the color for Aplastic Anemia
Be CORAgeous!
Our amazing nurse Alex came in early this morning and said "I had good news and bad". Deep breath, swallow, hit me with the news. "The good news is you are moving to a big room, the bad news is you have to move now" So, there Cora and I are doing our happy dance in our pj's! We even got to take our new fridge to the big room. Actually, Cora was totally freaked out about the move and keeps asking to go back to the old room. Oh well, I celebrated the move all day. What a difference a little more space makes!
Tomorrow is bone marrow transplant day. The day will look something like this - wake up, coffee, shower, wait, wait, wait. Andrew will go into pre-op at 9:45 and surgery at 11:30. The bone marrow will go in Cora's central line about 3 hours later and take no longer than 4 hours to go in. Sort of anticlimactic, given that this is a life saving procedure. I will go home with Andrew to help him with his recovery. He will be in pain and get to watch lots of movies.
After that, the waiting game begins. We will need lots of prayers that Cora's body doesn't get any infections. There are things to worry about that change with each week and I will keep you posted on that. For now, I am asking everyone to pray that the effects of chemo are minimal for Cora. She will start feeling really bad early next week. We are going to spend some time together tomorrow as a family, enjoying our feisty toddler.
I will do updates on Andrew when we get back to the room tomorrow.
Wear your Be CORAgeous t shirt tomorrow to support Cora. If you haven't gotten a shirt, wear red - the color for Aplastic Anemia
Be CORAgeous!
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