It's the not knowing...

SUNDAY, FEBRUARY 5, 2012 3:48 PM, EST

written by Heather Dalik

It's the not knowing....

It is the not knowing that is making me nuts.  Not knowing what life is going to bring.  Not know if Cora will stay on this healthy path.  Not knowing is Cora will get sick and end up in the hospital.  Friday afternoon Cora cried and cried, for hours on end.  I put her to bed around 6:00.  She looked terrible.  I was absolutely convinced a fever was coming.  So convinced in fact, that I packed my bag and told the kids so they wouldn't freak when we weren't there in the morning.  I got up every hour and checked Cora for a fever.  (Ok maybe, I skipped the 5:00 am check.)  Hour after hour, no fever.  Precious little girl, sleeping soundly.  I prayed every single time I went back to bed that her body would fight whatever was going on.  I prayed before I got out of bed and prayed again before I touched her head.  And when she woke up in the morning, she was all smiles!  Go figure! 

I signed up to join a bone marrow failure support group.  Saturday was the first meeting so I went as planned, since Cora looked fine.  The coordinators of the group are a wonderful couple and he was treated for Aplastic Anemia 8 years ago with a bone marrow transplant.  Bummer though that none of the people in the group are kids.  I hope that through the group, I will meet a family like ours.  I really want to hear what life is like 5 years later.  

After the support group Grace and Andrew went to our beloved Khloe's birthday party.  Khloe and Cora are the same age and will be the best of friends when Cora gets off house arrest.  The kids have been looking forward to this party for weeks.  The best part of the afternoon was getting to spend time watching my kids play and have fun.  Khloe's parents, Amy and Craig know how to throw a party!  Khloe is their miracle baby.  Amy had cancer and didn't know if/when another baby would happen.  Amy probably doesn't want me telling her whole story but I did have a fleeting moment yesterday when I looked around the room and thought, these people look so normal.  You would never know what they have been through just a few, short years ago.  Last weekend Amy and Craig dragged me (Jeff went willingly) to the Ulman Cancer Fund's Blue Jeans Ball.  She was awarded the Young Fight Award.  Yesterday was a perfect example of why that award belongs to her.  She fought and won.  Now she is helping others fight.  I am glad to have Amy in my corner! 

On April 29, our family will run the 6k, Port to Fort for Believe in Tomorrow.  That is where we stayed after Cora's Bone Marrow Transplant.  I read that 92% of funds go to help families.  That high % makes me feel great about giving back by helping to raise money.  Here is the link to our team. 

http://www.firstgiving.com/fundraiser/becorageous/port2fort2012 

Grace and Andrew are doing the race so I am sure we will be walking some of it.  Please join us.  Strollers and wagons are welcome for the kids.  I am also planning on doing training runs with the kids and will post them on Facebook.  

Pray that this is another uneventful week for Cora.  We have clinic on Wednesday morning this week.  I will update after our appointment.  

Be CORAgeous! 

"I not a baby"

TUESDAY, JANUARY 31, 2012 8:30 PM, EST

written by Heather Dalik

"I not a baby"

Since she could talk, Cora has been referring to herself as "baby".  If you ask her what her name is, she will say "baby".  Today, she said "I not a baby."  I said "If you aren't a baby, what are you?"  "A girl", she responded.  My baby girl is turning into a big girl.  

Cora has been taking advantage of the warmer weather andrequesting demanding to see the horses each day.  She is so cute when she says "hi neigh.  Here I am.  You eating nummies?  You got a blanket on?"  

Cora continues to do well.  We are still on house arrest, spending a good chunk of time each day sanitizing common surfaces.  Her clinic visit today was uneventful.  Her counts are good, cyclosporin level stable and no sign of GVHD (rejection).  We are really blessed that our journey has been so stable.  

This afternoon I took Grace and Andrew to the Wellness House for CLIMB.  What a difference it makes in the kids!  They were both pretty angry/upset because I wasn't home when they got home because of our afternoon clinic appointment.  On the way to Annapolis, I couldn't get the kids to talk about their day, plans for Wednesday, hopes and dreams, nothing!  All I got back was sour faces.  You can imagine this is hard on me and makes me resent our situation even more.  But, I put on a happy face when we arrived and asked the kids to do the same.  1 1/2 hours later - happy kids.  The drive home was constant chatter, chatter, chatter.  They were even able to say "I was mad because you didn't pick us up from the bus.  You always pick us up. I don't like when the routine is changed".  They are already looking forward to next week's group.  This afternoon was just a reminder that the ones that are hurting the most in this journey are Grace and Andrew.  Tonight I am thankful for Paula and the other Climb teachers.  

Be CORAgeous!

Everything happens for a reason

THURSDAY, JANUARY 26, 2012 2:13 PM, EST

written by Heather Dalik

Everything happens for a reason

Everything happens for a reason - cliche, but true.  Everyone you meet, has a reason.  What is that poem about friends - a reason, a season, or a lifetime?  So many people have come into my life or come back into my life in the last 6 months.  I know there is a reason for each and everyone of them but the reason may not be obvious right now.  I know why I met Bridget and Gretchen.  Bridget was close to the end of her journey, Gretchen in the middle and both were able to offer unwavering support as I came to terms with our new life.  I know why I met Kristin and Heather - the fundraisers extraordinaire.  I know why Deb sent me the caring bridge message about Sarah.  But what about those from the past that suddenly come back into your life? 
On Tuesday, I took Grace and Andrew to the Wellness House for CLIMB.  Climb is a support group for kids with a loved one who is ill.  As I was sitting there, filling out paperwork, in walked Paula.  I worked my early teaching years with Paula.  She was tough as nails and just the kind of teacher your want you child to have.  She doesn't put up with any stuff but will love your child with all her heart.  She has an incredible calm, listens like she means it, and speaks poetically about things that matter.  Turns out, she is Andrew's teacher for Climb.  I know, without question, Andrew will come out of our 8 week Climb session a much happier, less worried little boy.  Paula is going to do what I cannot do.  She will get him to talk about his feelings and work through some of his anxiety over Cora being sick.  Andrew is in the best place possible.  So, why was Paula chosen to run the group?  Maybe because we are in a place of healing and Paula is a healer.  Maybe because I am already comfortable with her and it won't take much for me to turn my boy over to her each week.  Maybe because someone knew I needed a familiar face who understands what we are going through.  

So, I guess my message is don't take interactions for granted.  Everyone you talk to each day - there is a reason.  Each person you talk to at the grocery store (or Lowes - Shannon please email me if you are reading this), they have a story.  Take the time to listen and don't take them for granted.  Every Mom you meet on the playground has a story.  You met that Mom for a reason.  Every co-worker, every business associate.  There is a reason. 

Okay - enough heavy stuff!  Cora's clinic visit yesterday was uneventful.  Aren't you glad to read that?  She does have a cold, mostly in her chest.  She is handling it though and I am not worried (little white lie).  It looks like we will only go to clinic once this week.  Isn't that amazing!  Look at how well she is progressing to health.  This is one of those level times, when the roller coaster is neither up or down.  I have gotten updates from several of our new friends, most I have asked you to pray for at one time or another.  Everyone is doing well.  Let's pray that the roller coaster stays level. 

Be CORAgeous!

Don't you want to turn back time?

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! 

Whose Birthday is it?

SATURDAY, JANUARY 21, 2012 8:14 PM, EST

written by Heather Dalik

Whose Birthday is it?

There is no question whose birthday it is.  If you ask Cora she will tell you "me,me,me".  It has taken me several hours to get my thoughts together for a journal.  Today, also marks the 6 month anniversary.  At exactly 8:17 we were being transported by ambulance to Johns Hopkins.  I am going to reflect on the last 6 months tomorrow.  Today, I will honor Cora. 

Dearest Cora Bean, 

    At 8:32 a.m. on January 21, you simply couldn't wait any longer.  Even though we were schedule to be induced the next day, even though everything was planned out, you couldn't wait.  In a few, very short hours,  (Daddy still shudders a bit when he thinks about the drive to the hospital.) you were part of our family.  I still remember the first time you saw your best friends, Grace and Andrew.  You loved them instantly and our lives were forever changed.  
      
     You turned 2 years old today.  6 months ago we didn't know.  We didn't know what was wrong or if we could fix it.  For many months, time stood still.  You stopped meeting milestones.  You stayed a baby, when you should have been turning into a toddler.  You were sick, very sick. 

     I have spent the last two days marveling at all that you can do.  You are a toddler now.  You walk and have started to run.  You talk, talk, talk and then talk some more.  You want to dress yourself and pick out your snacks.  All normal things a toddler would do.  Yet, there are so many things that are uniquely you and this is what makes us love you so. 

- you are sunshine in the morning, sunshine at night 
- you are happy, happy, happy even when you are crying 
- you love your "woof woof" even when she takes your breakfast
- you love Grace and Andrew more than words can say 
- you live with passion that many people look for all their lives 

     I have heard from many people that you are here for a reason.  You have a message.  I know now you are here to teach us about love, strength and courage.  You love with your entire body, unconditionally, all day long and without question.  Because of you, I am also learning how to use the strength that we all have deep within.  Courage - that needs no explanation.  

      I am looking forward to this next year.  I can't wait to see where you will take us. 

Happy Second Birthday! 

Be CORAgeous!  
Love, Mommy 

Happy to you!

TUESDAY, JANUARY 17, 2012 12:50 PM, EST

written by Heather Dalik

Happy to you!

On Saturday our amazing baby girl will officially turn 2.  That date also marks the 6 month anniversary of our journey (or rollercoaster, depending on the day).  I have no idea how that date will affect me but I can tell you that our almost 2 year old is super excited that there is going to be a party just for her.  

A few weeks ago I was really, really bummed about not being able to give Cora a birthday party like last year with family, tons of kids, cake, presents and SNOW (we made it snow in the garage and the kids are still talking about it)  Birthday parties are my thing.  I love putting them together and tend to go over the top.  We are still in the land of "no exposures" so, what could I do?  Late one night, I decided to throw a birthday party from invites to goody bags, for three kids.  So, Sunday afternoon Grace and Andrew will leave the house, presents in hand, and come back a few hours later.  Cora and I will decorate and get some snacks ready for a "neigh" party.  The invite said "Hurry, don't be late.  We've got a lot to celebrate."  Boy, do we have a lot to celebrate!  

Grace and Andrew are super excited to celebrate with Cora.  Grace, being one for details, wants to know exactly all the things I have planned.  Somehow, I have managed to keep most of it from her.  As the party was being planned in my head, I tried to keep it simple.  Honestly, I did.  It kept getting bigger and bigger and bigger.  So, I threw away all my notes. 

I decided to do a challenge (because I don't know if you have noticed, but I am getting bored!)  I decided to see if I could do this party without buying anything but food.  I set the rules - everything from the party must be from our house or a friends house, except food.  1/2 of that had to come from our pantry.  The ability to throw a party on no budget means one of two things (1) you have too much stuff in your house or (2) your friends have too much stuff in their house.  

We are 5 days from party day and I am doing well.  I have spent $7.  I did my regular craft store runs and came home with ideas.  Every time I went to add something to my cart, I came up with a substitute from my craft stash.  I cannot wait to share our girl's 2nd birthday party with you. 

Now onto the medical stuff, which is why you read anyway.  Cora's clinic visit today was uneventful.  Even though Cora and I had a long talk about cooperating and adding in a bribe, when it came right down to it, she wasn't buying it.  I was so thankful for a sweet friend who offered her Leap Pad to occupy Cora while I talked to Nancy.  Last week Andrew, Cora and I had a quick cold but nothing came of it for any of us.  I didn't even freak out when I heard coughing.  (See, like Stephanie says, the more times nothing happens, the more relaxed you will get.)  And the best news, Cora's potassium levels were fine.  She was thrilled to hear and on the way home she said "Mommy, I eat nannie (banana) at home?"  "Yes", I said.  "Oh wow, nummie!"  She was so happy and I think she enjoyed every single bite of her banana, that she ate before she took off her coat.  

So, the rest of this week, the kids and I will spend our afternoons doing crafts and baking because they get out of school early the whole week.  I promise to post birthday pictures after the weekend.  

Please continue to pray that Cora's immune system stays strong and that she doesn't need another IGG infusion.  

Be CORAgeous!  

"I love you Mommy"

WEDNESDAY, JANUARY 11, 2012 1:23 PM, EST

written by Heather Dalik

"I love you Mommy"

Finally, finally, finally Cora said "I love you Mommy".  It has become quite a game over the last month or so.  I say "I love you Cora" and Cora smiles with her cute but coy smile, refusing to tell me she loves me.  She says I love you to everyone else - Grace, Andrew, Daddy, PopPop but not Mommy.  In fact, last week Grace said "Cora, say I love you Mommy".  Obedient little Cora repeated Grace and then realized what she said.  She covered her mouth and said "Nooo".  It was super cute and then I realized the scope of her game.  I kept trying because I am not one to give up.  Today, she finally said it!  Not only does this mean she loves me, it means she isn't as strong willed as her sister.  This is good news for the future of my sanity.  

Clinic yesterday was very tiring.  The last two visits Cora has spent the bulk of the time crying or screaming or generally unhappy.  She used to do her vitals and blood with a smile.  Now, that smile is more of a scream that the whole clinic can hear.  She fought her exam with Nancy and couldn't even be bribed with cookies.  Ugh!  Nancy said she sees this with the little ones. When the visits are reduced, they cooperate less.  Cora's potassium levels are up slightly so I had to take away her favorite food, banana's.  You try explaining potassium levels to a two year old who just wants a "NANIE, NOW!" Next Tuesday, we will retake the levels.  If they are still up, Cora will get fluids to flush her system.  Lets pray they are down and we can give her bananas back.  It has to be tough not being able to eat your favorite food.  She caught sight of strawberries in the fridge today, which are usually well hidden.  "Oh WOW! This, this"  She wanted one so badly.  I told her they were tomatoes and she doesn't like tomatoes and shut the fridge rocket fast.  Later, she said to me "Mommy, I like strawberries, please".  Just a few more months of the food restrictions! 

We have a location for the bone marrow drive now we just need to pick a date, which is near impossible because this town is football crazy.  I promise the drive won't interfere with football.  

Please pray for Cora and her bananas.  Also, please pray for our friend Alyssa, who I have mentioned quite a few times.  Friday, she will have blood tests and a spinal tap.  Keep her in your prayers on Friday.  

Be CORAgeous