Reflection

WEDNESDAY, MARCH 28, 2012 1:20 PM, EDT

written by Heather Dalik

Reflection

Suzanne (fellow cancer Mom) wrote asked in her journal, if you knew this could be the last day of your child's life, what would you do?  Just the public acknowledgement that her child is nearing the end of his battle with cancer, is heartbreaking.  Faith will undergo her second bone marrow transplant to rid her body of cancer.  Baby Jackson is day +14 post bone marrow transplant.  Alyssa just found out she only (yes, only) has 11.5 more months of chemo.  Sarah will undergo more testing to see if her body is rid of cancer and ready for a transplant.  The list goes on and on.  These are all children that I have come to know and love during our journey.  

I have come to realize how incredibly blessed we have been starting with having a bone marrow match.  Cora came through chemo prep and transplant with flying colors (although it didn't seem like it at the time). We have stayed (mostly) germ free at our house, which has protected Cora from another hospitalization.  We are blessed and it is time to start giving back.  

I am going to get swabbed to be on the bone marrow registry.  Before Cora got sick, I left it up to everyone else to take care of the sick people.  I didn't know any child that had cancer.  I didn't even know what a bone marrow transplant was.  Hopkins was a place the sickest people went.  I had never been there.  

I hope you are inspired by Cora's success.  Come and get swabbed with me!

Saturday, March 31 

Severna Park Racquetball and Fitness Club

8514 Veterans Highway

Millersville, MD  

9:00-1:00

Be CORAgeous!

Flu season

MONDAY, MARCH 26, 2012 2:49 PM, EDT

written by Heather Dalik

Flu season

This morning at clinic Nancy and I talked about how flu season is finally peaking.  It seems so weird the flu season would peak when it is March.  Usually, March is when flu season is winding down.  No more quick errands, no more hugging friends.  There are two nasty flu bugs out there right now and Cora shouldn't be exposed to either.  We would hope her immune system could handle a flu but I am not willing to take chances.  I have to admit I have gotten lazy about disinfecting, doing common surfaces every other day instead of every day.  I even let the nasty, germ laden backpacks in the house!   Sorry, but we are locking the house back up.  Back to the rules of January, back to protecting Cora no matter who gets upset, back to being afraid of the flu.  

Cora's potassium level was 5.3, which is exactly what it was last Monday.  Nancy hasn't called with Cora's other blood counts but we are hoping they are stable as well.  

Thursday Cora is participating in Flashes of Hope.  Photographers are brought into Hopkins and the kids are treated to a photo shoot.  The photographers are all professionals who donate their time.  I have decided to have Cora photographed in her beads of courage.  For every event during this journey, Cora gets a color coded bead.  She has 4 necklaces so far.  She loves hearing the story of her beads.  Her bone marrow transplant bead is by far our favorite.  One day, we will have her beads made into something special.  I can't wait to share the pictures with you.  

Speaking of photographers, my dear friend and photographer Kelly is having brain aneurysm surgery today.  She was one of the lucky ones, as it was caught before it ruptured.  Kelly has kids the same age as Grace and Andrew.  I met Kelly at a time when I really needed a friend.  Grace was two and and Andrew was a baby.  I thought I was going to loose my mind keeping up with Grace and her limitless energy.  Kelly was my best friend's wedding photographer.  Go figure - I helped her at the wedding and we hit it off.  I remember our first play date like it was yesterday.  She was watching Grace and Dylan play.  Laughing, she said "You are right.  She can keep up with Dylan.  They are perfect for each other!"  Kelly has taught me that I am slightly (I can hear you laughing!) over protective, I worry too much and sometimes you just have to do what you love.  Today, I think my worry is founded so please pray for a successful surgery and recovery.

Be CORAgeous!

What weather!

FRIDAY, MARCH 23, 2012 10:16 AM, EDT

written by Heather Dalik

What weather!

I know how blessed we are to have this wonderful weather.  I hate the cold. In September I had no idea how I would make it through Jan and Feb, stuck in the house with a toddler.  Would you believe we only had two weeks where we couldn't go outside!  That is amazing.  Cora's doctors tell us the lack of flu season was a contributing factor to keeping her well.  We have enjoyed lots of time at the park and outside, especially the last two weeks.  Our new routine, lead by Cora, is to rush outside after dinner, leaving the kitchen a mess.  Oh well, I just go with the flow and clean it up later.  Playing is more fun anyway.  

I have spent the last few days prepping for a craft show this weekend.  I will be at St. Phillip Neri in Linthicum on Saturday, if you want to stop by.  Cora is an eager helper and my show bags have been completely reorganized, thanks to Cora.  This morning she was sitting at the sewing machine, pretending to sew.  It was quite cute to see her with the tape measure around her neck, sewing ribbon.  Suddenly, she looked us and said "Mommy, I want to stop working now." and jumped down out of the chair.  "Come on Mommy.  Let's play."  So, I will have less inventory at the show but a happy girl.

Clinic this week was uneventful.  Cora's potassium levels are stable but creeping up.  It is a waiting game.  We did lower the dose on one medication in the hopes that will help.  

I took Cora on a fast errand, first thing in the morning.  We were at Kohls by 8:30.  She rode in the stroller, kept her mask on, didn't touch anything and was only a tiny bit scared.  In the car we talked about how if she was scared, I would hold her but she couldn't scream.  She kept asking "Who is that?" when we passed another customer.  I am getting used to the stares when she wears her mask.  This is progress for me because the staring used to infuriate me.   

Cora's sentences are up to 7/8 words.  I told her yesterday something our pediatrician told Grace.  If you can put 7 words into a sentence, you are smart enough to use the potty.  She just looked at me and said "no".  Should we start making bets about when she will potty train?  I suspect this one is much like her older sister and will do it when she is ready.

Not much else to report for the week.  All of our cancer friends are stable so the prayers worked.  

Thank you again for your unwavering support!  Don't forget about the Bone Marrow Donor Drive on March 31.   Details are on Cora's facebook page.

Be CORAgeous!

Tired, just tired

SUNDAY, MARCH 18, 2012 9:03 PM, EDT

written by Heather Dalik

Tired, just tired

     We had a super fun weekend!  Friday Grace, Andrew and I started out the weekend watching our friend Taylor perform in a play.  She makes the best Rapunzel and I think they are holding a job at Disney World for her.  We are so proud of Taylor!

     

     Saturday, we did a two mile training run/walk to get ready for the Believe in Tomorrow Children's House 6k.  I fully expected to have Andrew sitting in the stroller with Cora 1/2 way through.  Not only did he make it the whole way, he ran most of it.  There is hope for him!  He did come up with some interesting excuses, "My spine is too soft to run" and "I have a splinter in my big toe, even though I have my shoes on". But, in the end he did two miles.  Grace ran almost the entire distance and didn't complain.  We won't talk about what I did/felt/complained about.  The months of no exercise are catching up with me.    

     Saturday afternoon Grace, Andrew and I went into Annapolis to see Andrew's beloved Ms. Anna and her band play.  Ms. Anna is a talented musician, with an adorable daughter.  She also happens to be Andrew's teacher.  Whenever there is music on in our house, it is either Milkshake or Ms. Anna.  We celebrated Ms. Anna's favorite song "The Little Red Hen".  The kids came home and played the cd and acted out the song with Cora.  I videoed most Cora's favorite songs for her to watch at clinic this week.  Annapolis on St. Patrick's Day?  Not a great idea!  We had a quick dinner and came home to a smiley Cora and Jeff. 

    

    Each time anyone leaves Cora, she asks "I go this time?"   It breaks my heart to have to say no.  So, we decided to try a trip to the zoo. This is one of the approved activities as long as we go first thing in the morning and don't stay long, no gorilla house, no tram, no children's petting zoo.  Each time I went off on another adventure with Grace and Andrew this weekend, I told Cora on Sunday we would go see the animals.  So, this morning as soon as she woke up she excitedly asked "Daddy, I go see the animals?"  She was the first one finished breakfast, first one dressed, first one in the car.  Her eyes were wide as we drove on a road that didn't take us to Johns Hopkins.  She was speechless as we packed up the stroller and got ready to go in.  She had a blast!  Her whole face smiles when she is happy and you can see her smile, even when her face is covered in a blue mask.  She smiled the entire time, even though she was scared.  

     You see, no one thought to suggest that reintegration to society should be slow and purposeful.  I had to learn this the hard way but it only took once.  I got the message from Cora and won't make that mistake again.  Last weekend, while Jeff and the kids were visiting his parents, I tried to take Cora out thinking it would be easier if it were just her and I.  It was a disaster.  She was scared, crying, shaking and very happy to be back in the car after only 5 minutes in an empty mall.  So, I talked to a few people who know about this kind of stuff and made a plan to try again.  The zoo might seem like a bad choice but first thing in the morning, there isn't anyone there.  It is outside, which Cora is used to.  

     We have always had a membership (thanks to Grandma and PopPop!) so Grace and Andrew are familiar with the layout.  (We have had a bit of trouble reintegrating Grace and Andrew too.)  We met friends there, which was perfect for Grace and Andrew.  They immediately paired up and lead the way.  Anyway, the slightly damp morning lent it's self to a perfect outing for our family.  We got to stay a bit longer than we thought because of the weather.  Andrew told us in the car on the way home "You know sometimes nature gives gifts.  Today we were able to stay longer because of the weather.  That was a gift."    

     At 8:45 tonight, the three Dalik children were still awake.  I can hear the gasps as, the Dalik children are in bed by 7:30 - asleep.  Tonight, all three were totally over stimulated by our fun weekend.  Cora chatted away in her bed about all the animals until 9:15.  Grace and Andrew eventually fell asleep, dreaming happy thoughts of Rapunzel, The Little Red Hen and spring at the zoo.

     Clinic tomorrow.  Pray for good potassium levels.  My bag is packed because I don't think I can stomach the mac and cheese again.  Also, please pray for our friend Alyssa as she battles the effects of chemo and for Baby Jackson who had a bone marrow transplant a few days ago.  

Be CORAgeous!

A Happy surprise!

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! 

Update

MONDAY, MARCH 5, 2012 1:46 PM, EST

written by Heather Dalik

It was Sunday night before I realized I didn't do an update last week.  Cora had clinic on Mon so I decided to wait.  I was hoping we might have the results from the 6 month blood work.  Today was an uneventful clinic visit but the results won't be back until Friday.  Today Nancy told me she expects the results to be fine.  At this point, it would be okay if some of Cora's marrow came back.  I didn't know that and have been worrying myself over these test results.  Nancy said that Cora's counts have rebounded and this is the best indication of transplant success.  I am sure I will think of tons of questions about that as this week wears on as I am a little confused about our brief conversation regarding this.  All of the other bmt's I know are cancer kids and, in those cases, they want the most donor marrow.  I assumed the same would be true for Cora.  Still, it will be interesting to see what % of her marrow is Andrew's. 

Cora behaved very well at clinic today and had her port accessed with only a little screaming.  Nancy and I went over the particulars - eating, drinking, happy?  We talked about the days following the IGG infusion and how we will handle that in the future.  I am hoping there isn't a need for another infusion.  

We got to see Baby Ava, another BMT.  It was great to see Julie (Mom) and talk about "things".  There is a lot of comfort in talking to someone who is going through the same house arrest!  Cora talked about "Baby Avy" on our drive home.  The last time we saw Ava, she wasn't walking yet.  Cora was impressed with Ava's new found steps.  "Mommy, Avy walk?"  I also got a big snuggle from Ava, which Cora wasn't too sure about "Mommy, snuggle Avy?"  I can hardly wait for the girls to get together and play outside of clinic. 

Our celebration planned for Sunday had to be postponed.  Aunt Sooz and Uncle James both have colds.  The kids handled the news very well, mostly because they understand the scope of keeping Cora well.  We had a mini-celebration, put on by Grace.  We will celebrate big next weekend!  I also went and checked out the clean factor of our local Rita's.  Nancy suggested this might be a good summer treat.  That place is clean as a whistle and we will be able to take the kids there when the weather gets warmer.  The kids are already looking forward to it.  

Cora and I aren't scheduled to go back to clinic until next Monday.  Nancy also suggested we might start stretching the number of days between visits.  WHAT?!!?  That was my response.  I have come to count on those blood numbers as an extra security blanket.  I am not ready to stretch the visits!

A bone marrow donor drive in Cora's honor has been planned for March 31 from 9-1.  We are holding it at Severna Park Racqetball and Fitness in Severna Park.  I will post the details of the drive soon.  Save the date!  

Be CORAgeous!

180 days = 6 months

TUESDAY, FEBRUARY 28, 2012 8:41 AM, EST

written by Heather Dalik

180 days = 6 months

Today is day 180, post transplant.  We made it to 6 months!  We have so much to celebrate today.  Today, I am grateful for the courage of Andrew.  I shudder to think about the other path Cora's life could have taken if Andrew hadn't been a match.  I am also grateful that Cora's body knew just what to do with that great bone marrow.  My gratitude for Grace, Jeff and my Mom who help without hesitation is endless.  

The unwavering support of our friends and family has gotten us through the last 8 months.  (yes, it has been 8 months since that first email I sent begging you to pray for our little girl)  The prayer warriors have keep Cora largely incident free and without a hospitalization, which is our own mini miracle.    

This weekend we will have a celebration.  We will celebrate PopPop's birthday, Grace's straight A report card (amazing, given what she is going through), Andrew's first lost tooth, and Cora's 180 days. 

Please pray for 6 more uneventful months.  Our next goal is Sept 2, one year post transplant.  What a party there will be!  Hmm, I wonder if Milkshake is available to play the "lala" song?

Be CORAgeous!

One for Grandma

SATURDAY, FEBRUARY 25, 2012 9:34 PM, EST

written by Heather Dalik

One for Grandma

I just have to brag on Grace a bit.  The kids knew I had a "sewing date" today during naptime.  Grace asked a million questions about my sewing date, which project would we be working on, could she watch, etc.  Then, she asked, "why do you sew, Mommy?"  I like the feeling of being creative and it makes people happy when I make them things.  Good answer!  

Cora was very fussy this morning so she went down for a nap early.  Grace and Andrew finagled an invitation to help MomMom polish silver.  My sewing date and I got working.  Then, Cora woke up a bear and unhappy!  She ate a little but mostly wanted me to hold her.  I don't know if Shawn and I even finished a project - I can't remember.  

Somewhere in the midst of Cora fussing, Shawn leaving, Jersey and Jeff coming home, Grace got out some sewing.  She figured out her project and got to work.  Meanwhile, I am thinking to myself, how am I going to tell Grace I can't help her because I have to take care of Cora.  I try so hard to minimize the times I say that but today I was already spread too thin.   I was also a little annoyed that Grace would pick a project that eventually would need my help.  As predicted, Grace needed my help threading the machine.  While I juggled 35 pound, crying Cora, threaded the machine and got Grace all set up (still feeling annoyed with Grace) Grace is talking to Cora.  "See this Bean?  This is for you.  It is a blanket for your dolly.  See the bear?  I am making this for you because you don't feel good and this will make you feel better.   You can sleep with it (whisper - Is that okay Mommy?)  Just for you Bean because I love you."  

No more frustration, no more annoyance, just pure love.  Oh, and a new blanket for Cora's dolly lovingly made by her big sister.  

Be CORAgeous!

Ps - Yes Cassie, I am aware that I am creating a mini-me.  I am okay with that.  

Pss- Alyssa is in Disney World basking in the glow of the happiest place on earth.

Fast and happy!

FRIDAY, FEBRUARY 24, 2012 10:25 AM, EST

written by Heather Dalik

Fast and happy!

Sometimes the short tests take so long, you sit and wait and wait some more.  Sometimes you are in and out so fast, you aren't even sure if you had the test.  Today was one of those days.  Door to door, two hours!  I am pretty sure this is a record.  Cora cooperated with a little bribe from Elmo and some cookies.  

Oh, we had a different technician today.  I guess it was that formal complaint I submitted after the last test.  Like I said, don't mess with Momma Bear and her cub.

Alyssa is off to Disney World, decked out in a super cute Minnie t-shirt. 

All is good in the world of sick kids. 

Be CORAgeous!

Thank you!!

THURSDAY, FEBRUARY 23, 2012 6:31 PM, EST

written by Heather Dalik

Thank you!!

Yeah!  We made it through the infusion without incident.  The morning started so hectic and bad.  I left the house late, left "baby" (Cora's blanket) at home and had to go back and get it, traffic, parked on the 6th floor, I was late, late, late.  I prayed the entire drive to Hopkins that all these morning inconveniences weren't a sign of what was to come.  Cora's infusion started around 10:30.  I knew that the last infusion went wrong on the third medication increase.  Cora chilled on benedryl and I made headbands to relieve anxiety.  After about two hours of Elmo, Cora was tired but wouldn't sleep.  Not a good recipe for a toddler.  I ended up holding her for the remainder of the infusion.  We got through the two final increases and we were done.  WOW!  This new medication is faster than the other one.  It is more concentrated so it goes in faster.  We were finished over an hour faster than another patient.  I am grateful for that hour.  By 1:30, we were on our way home.  

Tomorrow is routine 6 month, post transplant testing.  She has an Ecco and EKG at 9:00.  Please pray that she cooperates during those tests.  Cora has a history of not caring for these tests.  I will take our favorite Elmo dvd.  I am armed and ready for the technician who was so rude the last time.  She better not mess with the Momma bear! 

Thank you for praying with all your might today.  This is the power of prayer.  

Be CORAgeous!

How about some more prayers?

WEDNESDAY, FEBRUARY 22, 2012 6:08 PM, EST

written by Heather Dalik

How about some more prayers?

Today was one of the worst days.  Really, it wasn't the worst (I think transplant day was THE worst) but right now, I am exhausted and it feels pretty terrible.  Cora woke up this morning and I knew something was wrong.  I held her while she ate a bagel.  I held her while she drank water.  I held her all morning!  I waited for the fever I knew was coming.  Right before her nap, a slight fever came.  I put her down for a nap, called clinic and started to get things ready.  See, in my world, a fever means you go to the hospital, right away and for lots and lots of days.  

Nancy (Cora's dr) called me back.  99.5?  Hang in there and wait.  Maybe the fever will go away.  Right?  Fevers never go away.  They get worse before they get better.  So, I packed a bag, got dinner ready, and warned Grace and Andrew.  Jeff stayed home and we waited, and waited and waited (and yes, I paced quite a bit) for our girl to wake up.  I checked her, using highly scientific method of sneaking in her room and checking her head temperature.  Then, we waited some more.  3.5 hours later, she woke up.  She woke up a new girl, no fever.  Nothing short of amazing, if you ask me.  We went out for a walk and Grace planned a celebration dinner complete with dress-ups.  Right now, the very relieved big kids are in the playroom with their little sister.   I am crying listening to them play together.  They love their little sister so much.    

And an update on Alyssa - no strep, got to wait that sickness out too.  

Please pray for our special girls tonight.  

Be CORAgeous!

Prayers for tomorrow

WEDNESDAY, FEBRUARY 22, 2012 8:51 AM, EST

written by Heather Dalik

Prayers for tomorrow

Tomorrow is Cora's IGG infusion.  This infusion will take about 4 hours, so I am already packing for a long, long clinic day.  IGG helps protect Cora from infection and when the levels get too low, she needs the infusion.  This is the infusion she had a reaction to in December.  Nancy (Cora's doctor) has ordered a change in brand of medication.  Our appointment starts at 9:00 and the infusion should start around 10:30.  I am already a mess with worry and dread. 

One of our pals, Alyssa, is supposed to go on a special trip to Disney on Saturday.  She woke up today - sick.  Maybe with some of our prayers, she will be well enough to go on her trip.  Please pray for Alyssa and Cora. 

Be CORAgeous!

Oh, tooth fairy!

SATURDAY, FEBRUARY 18, 2012 9:06 PM, EST

written by Heather Dalik

Oh tooth fairy!

I got this text message while doing some "self care" yoga this morning. 

"Andrew's first tooth fell out and we can't find it.  I think he swallowed it.  Love, Grace"  

If you think I am going looking for that tooth, you have another thing coming.  Good thing the tooth fairy feels a tingle in her wings when someone looses a tooth.  

Another ice cream celebration at the Dalik house.  These kids will find any excuse for ice cream. 

Be CORAgeous!

Uneventful

FRIDAY, FEBRUARY 17, 2012 8:57 PM, EST

written by Heather Dalik

Uneventful

Nothing really to report this week.  Just a quiet week with a rowdy two year old.  Cora's newest phrase goes something like this 
Cora -  "Mommy, get my cereal for me"  
Me - "I can't right now, I am driving" 
Cora -  "I said right now!"  Cute, eh? 

She is also very interested in her scars and port.  Lately, Cora has no use for clothing, which lends itself to questions about her scars.  I told her about her port, her medicine and how she was sick.  We talked about how Andrew gave her a special present called bone marrow (I am sure she imagines this thing called bone marrow in a box with a beautiful bow.)  We talk about how her scars show her courage.  We talk about how her medicine made her hair fall out and we gave it to the birdies for their nest.  I have told her this story many times this week.  She listens with wide eyes and tries to make sense of what I am saying.  I know what I tell her will be her memories and I have to create those memories to be truthful and show courage.  

Our clinic visit was a bit long this week because I forgot to put on the numbing cream, used before a port access.  Cora didn't mind and played in the playroom while we waited.  Her potassium level is returning to normal so she can have a banana every other day.  Yeah!  Her IGG level is 480 and this means the time has come for another IGG infusion.  This is the medication she had a reaction to in December.  Nancy told me we will switch brands, infuse it very slow and keep a very close eye on her.  Typically, children do very well with the different brand.  Nothing about Cora is typical so I will be a ball of stress on Thursday.  

Feb 28 is day 180, post transplant.  Any suggestions for a celebration?  I am a little tired of donuts and icecream!  

Please continue to pray for Cora's health and add an extra prayer for her on Thursday that the infusion goes without incident.  

Be CORAgeous!

Groupies

SATURDAY, FEBRUARY 11, 2012 6:41 PM, EST

written by Heather Dalik

Groupies

Admittedly, the kids I and are Milkshake groupies.  We go to every Milkshake concert we can.   Cora's favorite song is "Happy Song", which she calls "lala's".  I have the privilege of listening to this song several times every day.  Cora and I know ALL the words.  Today, Milkshake was hosting their Valentine Spectacular.  I knew Grace and Andrew would want to go.  Grace is a huge fan of Lisa, the lead singer.  She often asks me to do "milkshake hair", grabs a tutu and rocks out with Andrew on guitar.  So, this morning we sported our Milkshake hair, tutu and air guitar.  Of course, Cora wanted to go.  I did feel very sad and guilty that I couldn't share this concert with her but the church it was held at holds 1000 people.  Something tells me Nancy (Cora's doc) wouldn't approve that trip!  

On the way out the door Jeff said "I hope they play lala's for you"  I said "I hope not.  I will cry"  Silly me, thought nothing of that comment.  I mean really, what is the likelihood that they would play THAT song.  I didn't even make a plan for what I would do if they played that song.  I just figured the odds were in my favor, it would be fine.  

I am not a natural story teller but I will try to tell the rest of the story.  There I am listening to the music, happy because the kids were rocking out by the stage having a good time but sad seeing all the happy two year old, missing Cora.  Lisa says "So, is there a Heather out there?"   "Yeah, right another Heather", I tell the kids.  "So, she may have brought Grace and Andrew.  She is Cora's Mom."  Seriously - you are looking for me?  If you know me, you know I am waaayyyy under the radar.  I would never choose to go on stage with 500 people looking at me.  Grace and Andrew's eyes were wide as saucers as I made my way up to the stage.  By the time I was in front of Lisa and Mikel, I was crying.  She told the audience our story (this is as close as I can remember) - "Heather sings this song with her little girl Cora.  Cora couldn't be here today because she had a bone marrow transplant from her big brother Andrew.  Her big sister Grace is amazing too.  We are going to sing this song for Cora and you are going to help."  I got the be "lala", which is Cora's favorite part.  Imagine, if you will, 500 strangers watching you sing a song and cry (and cry and cry and cry).  We sang, I cried, my kids watch with eyes wide, not really sure what they were seeing.  

At some point Mikel said to me "We got your email"  Email?  I didn't send an email to you???  Ohhhh, remember Jeff saying "I hope they play lala's for you"  Jeff wrote to Milkshake asking to them to play the song and dedicate it to Cora.  While incredibly embarrassing, it was an amazing experience for the kids and I.  Thank you Jeff!  

Mikel said "This might be one of the best Milkshake Moments".  I later told Mikel the best Milkshake moment for me will be when Cora can hear that song live.  Now, I am really, really looking forward to sharing Milkshake with Cora.  

Oh, I forgot to mention at some point girls from the church (who were dressed as angels) gave Grace and Andrew posters they made for our family, which the kids will always treasure.  These girls were so sweet, giving us balloons for all three kids.  

One last thing - remember a few journals ago I talked about everyone you meet or talk to, there is a reason.  While we were in line, I chatted briefly with a woman.  Just chatter.  I didn't tell her our story.  I was teetering on crying for some reason so we just chatted about the music while we waited to go in for the concert.  After the concert, she came and found me.  She said "I know why we talked.  My friend's daughter had a bone marrow transplant when she was a baby.  She is 5 now."  You know I have been searching and searching for someone whose baby had a bone marrow transplant and is older.  I was to hear what life is like one year post transplant, two years post transplant.  The woman I met is putting me in touch with her friend.  Amazing!  Simply amazing!  

Cora's clinic visit this week was uneventful.  Her counts were good but her potassium levels are on the rise again so no more bananas.  Every day we see the subtle changes into toddler hood.  Cora's sentences are 5 or 6 words, clear and demandingloving.  She loves her family and Mommom has successfully taught her to say "Shake your booty", which makes us smile every time.  Her hair continues to grow back a completely different color and texture.  

Please pray for Cora's continued good health. 

Be CORAgeous!

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!