one year later

one year later

Written 7 hours ago by Heather Dalik

It has been a year.  A year since the mysterious dropping toys, unsteady walking, and the big bruise.  A year since the low grade fever and a year since day of crying.  Saturday is our diagnosis anniversary.  Assumed diagnosis only took a few hours and it was confirmed three days later.  It is really weird to relive some of the same activities of this week from a year ago, knowing now how fast life can change.  Yesterday, we went to the library for a magic show.  A year ago, we went from the same magic show to the pediatrician to Hopkins.  Yes, I cried at the magic show.

Toady at clinic, Nancy and I talked about what is next.  To many, our journey is over.  Besides short hair and a few scars, it is impossible to tell what Cora has been through.  I hear many times a day how amazing she looks.  Today, I was reminded our journey is far from over.  We are through the high risk time coming off the anti-rejection medicine.  Now, we enter the relapse high risk time.  Travel from one fear to another.  

When you see Cora out and about, she may or may not have her mask on depending on the environment (it is simply too hot to make her wear the mask outside).  Treat her like you would a newborn and please, don't touch her hands.  She longs to touch and hug people so don't panic when she hugs your child.  I have my hand sanitizer in my back pocket.  If you know your child isn't feeling well, ask them to steer clear of Cora at the playground or pool.  A simple cold could still turn into a hospitalization for Cora.  

To answer some of the questions that everyone is wondering - 

She won't go to school in the fall.  Preschool is too germy.

She might go to music class and a kids playgroup just for kids with cancer and weak immune systems.  

She will start having playdates - soon.

Food restriction still stand - no fast food or food that sits out.  No snowballs or soft icecream or anything that comes from a machine.  No leftovers.  Food must be sanitary.  As much as we would like to think it is okay, the bag of goldfish that has been in your pool bag all week, is filled with bacteria that could make her sick.  

Most of all - just ask.  Questions don't make me mad or upset me.  

Saturday we will celebrate the miracle of Cora's life and the bravery of her sister and brother.  At the swim meet, we will wear red ribbons as celebration of life.  Red is the awareness color for Aplastic Anemia. Dig out your Be CORAgeous t-shirt or wear red on Saturday and celebrate life with us.  

Be CORAgeous! 

focus

focus

Written Jul 17, 2012 2:08pm by Heather Dalik

Sarah's homily this morning - focus.  Focus on the storyboard in your mind, the stories you have with Sarah.  Pictures, events, and moments.

In the church, I reflected on when I met the McMahons.  I responded to an add in the newspaper (ewww - I know, this was 16 years ago).  They needed a nanny for their infant.  I was drawn to the ad, drawn to the interview and drawn to the baby.  Little known secret - I don't do babies!  I did not set out to be a baby nanny.  But, drawn like a magnet to this little creature.  And that is how we went for many months to come (neither Deb nor I can remember at what point I got my teaching job and left them).  Sarah and I would play, take walks, and do craft projects.  I remember when she started eating solid and how feeding her took all morning.  I remember when she clapped for me for the first time.  Mostly, I remember thinking this baby was special.  

The last time I saw Sarah, they were preparing to travel to St. Jude.  She looked so good and I commented that it was impossible to see the war being waged inside her body.  "I know, but how is Cora?", she asked.  Her focus was always on the others around her.  I wanted to talk to Sarah, to give her some of my strength and give her the power to fight.  She wanted to talk about Cora (who was running around, amusing everyone at clinic)

I have spent the last two days crying, until I could cry no more.  I think this might be the big meltdown that Bridget warned me about (I am okay if this is it because I have been fearing the melt down.)  On the way home from the funeral today, I digested the message - focus!  Focus on Grace, Andrew and Cora.  Focus on healing our family.  Life had started to creep back in and my focus was blurry - too many activities, too much running, not enough time together.  Focus!

It was an honor to have known Sarah.  

Be CORAgeous!

quite a week

quite a week

Written Jul 15, 2012 9:20pm by Heather Dalik

This is going to be quite a week.  Today, I did what I always do to clear my mind - I purged the house.  After spending several hours taking my anger out on the garden weeds, I started on the attic.  Our attic is where all the bugs go to die.  Oh, yeah that is also where the toys we aren't quite ready to part with are.  I sorted, cleaned, made piles, and threw away or donated bags and bags.  The two little kids kept out of my way, oblivious to my pain and anger.

Dear Grace kept one eye on what I was doing while she "played".  Maybe she was worried about me but she has the hoarder gene.  Every third item slotted to go out, came back in.  Quietly, and without words, she would leave her "play" (which was just a guise for "I am watching you") and retrieve the beloved item which no one has looked at in 6 months.

Getting rid of things clears my mind.  Many, many hours later our attic storage spaces and playroom are in order.  A garage sale date has been selected.  Thank you Sarah (and Jeff too because he allowed himself to be bossed around all day)

Tomorrow is Sarah's viewing and Tuesday is the funeral.  Ironic, that Cora has a clinic appointment at the same time as the funeral.  I will reschedule the clinic visit since Cora looks great.  This is a huge step for me because for the first time in nearly a year, I will not be putting Cora first.  

Tomorrow morning I have plans to head over to my "favorite" bank and pitch a royal one about the fact that my accounts are still frozen and I have no access to my money.  Someone isn't doing their job and I plan on fixing that.  So, if you hear a news report about a woman who took her three kids into a quiet bank and had a parade through the bank - it wasn't Grace on the drums, Andrew on the cymbals, and Cora on the harmonica.  My sister suggested that someone who would carry out a plan like this, might get arrested.  How about the irony in that?  

Be CORAgeous!

Sarah

Sarah

Written Jul 14, 2012 7:09am by Heather Dalik

I am sorry to be the last one to post this.  I went to bed, unable to handle the reality that Sarah is gone.  Cancer took our strong warrior at 5:00 Friday night.

 This isn't how the story was supposed to end.  Cora was supposed to grow up with Sarah, hearing stories about when they were sick.  Sarah was supposed to be the "cool adult" in Cora's life.  The one who knew about sickness, the effects of chemo, and how sickness changes you. 

I am thankful that Cora is too young to know her friend is gone.  I will handle my grief today at the swim meet.  I will stand in the rain and hope it washes the grief away.

Be CORAgeous!

Update on Sarah

Update on Sarah

Written Jul 12, 2012 8:02am by Heather Dalik

This is Debbie's update on Sarah (from yesterday)  Please pray for our fighter.  She has so much life left to live.  She must beat this cancer and the monster chemo.

The last two days have been extremely difficult days. On Tuesday morning we had to make a decision to help Sarah's heart to work. She became so sick that her heart was laboring to work and her breathing became rapid that she had to have a breathing tube put in. When they did this early Tues. Morning her heart stopped and she had to be defibrillated. Then all the doctors came in and we talked for an hour about how best to help her. The doctors talked about an ECMO
(google it) it does the function of the heart , life support, so the heart can rest, or did she suffer too much trauma from the chemo to get past this. We said we have go in and ask Sarah. Sarah couldn't talk because of the tube in her mouth but she could blink and squeeze Dan's hand. Dr. Gamper explained what he wanted to try and he asked her if she wanted to fight? We asked her a couple times to answer and I asked her to blink her eyes 3 times if she wanted to try the ECMO and she blinked and squeezed Daddy's hand and pursed her lips and tried to speak and Dr. Gamper said "well that was a loud and clear Yes" .
She is a fighter and did we expect anything else! So that set the doctors off and running to get this set up. This took most of the day to get set up. Very complicated machines. They also set up a Plasma aspheresis, which is similar to what Dan did for Sarah in Memphis with the NK Cells extraction. It takes out Sarah's plasma and replaces hers with someone else's. The Dialysis machine also connects to the ECMO machine. We thought things would quiet down last night so we could get some rest but at 11 pm she was having fluid around the heart and she had to have a Pericardiosentesis, Which is when the fluid around the heart has to be aspirated. That was finished about 12:30 am. This morning, Wed. They did another exray and sonogram and found fluid around the lungs so it was another long day of working to help her with the tubes and machines and blood pressure meds and around 4 the tubes were placed in her chest to drain the fluids away from her lungs. That took a couple hours to complete and they have to balance the blood pressure while draining fluids which was very tricky. So much sickness flowed away. The left ventricle of the heart is still weak and doesn't squeeze hard enough to pump so they will administer some meds later tonight if the BP meds are lessened that will give some support there. Now it's 10:50 pm and the team is moving around moving things. Her blood pressure is a-little high now. It seems to be one or the other. We are hoping for a boring nite.
We love you and thank you for your strength and love and prayers. Thank you for the tributes to The CaringBridge in honor of sweet Sarah and all your prayers and notes. 

Be CORAgeous!

In the wrong line of work

In the wrong line of work

Written Jul 10, 2012 9:29pm by Heather Dalik

Apparently, Jeff and I are in the wrong line of work.  Mr and Mrs Pond Scum will continue to go about their lives, committing federal crimes for income.  I am seriously considering a life of crime because it certainly pays better than my current job.

The bank closed the fraud investigation, gave us our money back, end of story.  UPS and the Postal Authority don't care if the checks were stolen off my front porch.  The check company doesn't care that someone ordered out of our account without our permission.  Verizon doesn't care that we didn't turn off our service.  The police?  I am not even going to go there.  

And if I hear another completely insincere "I am sorry for your inconvenience", I am going to get Gretchen to come up with a snappy comeback!

Please continue to pray for Sarah.  She was unable to get the 5th monster chemo dose because her body was too toxic.  Pray that her body recovers and is leukemia free so she can move to transplant.  

Jackson got his port put in today, which is a huge recovery step.  Yeah Jackson!  

In all the stuff I have been dealing with, I totally forgot to mention our good news.  Cora's numbers looked so good at clinic last Thursday, we get to skip a week!  We are putting 10 days between visits.  This is huge.  I have instructions to check her daily (interpretation - every time she walks past me) for signs of GVHD.  Nancy said "I am always here if you need me.  Just call." (interpretation - go have a glass of wine) as I walked out the door.  10 days!  

Be CORAgeous!

Wait, it gets better....

Wait, it gets better....

Written Jul 9, 2012 1:33pm by Heather Dalik

I spent three hours at the bank this morning, closing and opening our accounts.  I am sure the bank rep thought I was a luney.  Short fuse?  Yeah, that was me this morning.  It all started with "Mrs. Dalik, we cannot do anything for you unless your husband is present."  He is four store fronts down, you know who he is, draw up this paperwork right now and I will get him over here to sign it.  He is not going to sit here and watch you for two hours.

No, you can't have free checking as we don't offer that type of account anymore.  YES, you will give me the same account that I had before and NO, I will not pay for the new checks and deposit slips.  

You can see how the morning went.

THEN, my bank rep says "Wait, you just ordered checks on 7/2"  WHAAAATTT?  When I look at my account at home, there is no evidence of checks being ordered.  In fact, checks were ordered on 7/2 and delivered UPS to my front door on 7/3.  Astounding!  I am sitting there in dismay, wondering how this could happen, how did they get the checks?  

Right there, in the quiet of the bank I realized - AHHHHH, Grace and I SAW the guy get out of his car, come on the porch and leave.  Strange cars in our driveway always make me pay attention.  The guy got out of his car, came up on the porch, bent down near the door mat (I was standing in the stained glass watching him.)  then he went back to his car.  I figured he put one of those flyers under the door mat so I didn't even open the door.  I did, however, notice he had something blue in his hand.   That was MY box of checks, wrapped in blue plastic!!

Reading this story, it sounds like a circus.  A calculated bit of malicious intent aimed straight at us.  So, pond scum, if you happen to be reading this, you have done your damage, robbed me of many hours and my sense of security.  Move on but watch out for karma because it will get you, if I don't first.  

Hearing all the phone calls and the mad voices, my sweet daughter just brought me a handful of Swedish Fish.  My girl knows just what to do!  Handful of Swedish fish and hug from the big girl - all is right in the world.  

Be CORAgeous!

Heart melting

heart melting

Written Jul 8, 2012 9:14pm by Heather Dalik

"Mommy, can I have some grapes?"

"Sure" (me standing at the sink cutting grapes, Cora at my side)

"Mommy, I lub (love) you.  So much"  and those chubby arms wrapped themselves around my left leg and hugged with all their might.  

All is good in the world.

For those who are interested - Sarah's caring bridge site

http://www.caringbridge.org/visit/sarahmcmahon

Be CORAgeous!

Random acts of unkindness

Random acts of unkindness

Written Jul 6, 2012 10:35pm by Heather Dalik

A while back I asked Gretchen (Alyssa's Mom) what she does when she is done, like D-O-N-E.  She said she writes a scathing email and gets over it.  I am not done, yet but need to write a scathing email.  The problem is, there is no one to write it to.  I have opted to share it on my "blog" (which isn't really a blog because I am in blogger denial).  The series of events of the last three days have left Jeff and I with an uneasy feeling about society.  And to ease your mind as you read, this has nothing to do with Cora.

Many of you know that on July 3 our phone/internet/cable was turned off.  It happened sometime between 2:00 and 3:00 in the afternoon.  Two hours on the phone with verizon, revealed that someone hacked into our account and canceled our service.  Slightly unbelievable, even to the account rep that I talked to.  She simply could not understand that I didn't cancel my own service, only to have it reinstated 6 hours later.  As I told her "I wouldn't mess my own life up just for giggles".  BUT we were without internet for two days and that is when the real problem occurred.  I seriously had on my list of things to do "check bank accounts" for mysterious activity.  We had two hang ups and two wrong numbers on Wed so I thought something might be up but wasn't terribly concerned because what is the likelihood they are connected?  Friday is a busy day at the Dalik house and well,  I never checked the bank accounts.

5:00 the phone rings - Bank of America Laurel branch calling to tell me someone just tried to cash a $3000 check from our account.  Jump on the computer and find out this person has been having fun, cashing checks from Cora's medical fund.  Two more hours on the phone and yes, our bank account and phone account have indeed been compromised by some low life, pond scum.  

Seriously, I'd really rather think these kind of people don't exist in the world, but apparently they do and they crafted the perfect scheme. They had our phone/intenet shut off so that the bank couldn't call us to verify check cashing.  Who would even think of that!?!?  

Please pray for 

Sarah as she endures day 4 of monster chemo, from the picu

Alysaa during her monthly steroid weekend

Jackson and Faith as they continue to soar after their transplants

My prayer for the pond scum?  Karma will get you!

Be CORAgeous!

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!