"I see neigh"

Saturday, December 10, 2011 8:05 PM, EST

written by Heather Dalik

"I see neigh"

"I see neigh."  This is all I hear, all day long.  This child is horse obsessed.  She wants to see horses at all times of the day.  Whenever she isn't thinking about something else, she thinks or talks about horses.  She is constantly looking out the window, "I see neigh".  Thank you to whomever called the equestrian center on Andover Rd.  Steve, the new owner, called Jeff and said we could come see the horses.  Cora has been to see the horses two days in a row and she is a happy girl!  I suspect we will be walking over there daily, just to make the girl happy.  A few days ago she told my mom, "I want neigh at my house".  I know I have said I will do anything to make our brave girl happy, but seriously, a horse in the backyard?  That might be pushing it. 

I do have to note that I am happy, happy, happy she traded in the elmo obsession for horses.  Horses don't get on my nerves as much as elmo. 

Monday is day 100, post transplant.  We will celebrate with icecream.  Day 100 is a milestone that simply means she made it to day 100.  Other than that, nothing changes.  I hope to write some sort of reflection of the last 100 days on Monday but it might just be too emotional. 

Apparently, no one told me Christmas is in two weeks.  I loose track of days pretty easily.  I need to get wrapping! 

Be CORAgeous!

Forgot part of the story!

Wednesday, December 7, 2011 2:03 PM, EST

written by Heather Dalik

Forgot part of the story!

In my tired state of mind, I forgot the whole reason I told you about Andrew.  I am so used to Andrew's ER visits that sometimes I even forget to call family and tell them.  You already know that last night's episode was so much less severe than usual.  (Can you sense my relief about this?)  We are very familiar with the night nurses and doctors, seeing the same ones visit after visit.  I haven't thought much about the St. Agnes ER doctor that delivered what I thought was the most horrible news, leukemia.  I remember how good she was to me, answering questions with calm that she must have mustered up from deep within.  I also remember thinking "she better be wrong". 

Amazingly, she was our doctor last night.  She remembered me and hugged me right away (and a real hug, the kind that comes from caring).  She was so relieved to hear that Cora was doing well.  One of the nurses shared our Gazette article with her so she knew that we were hopeful for a positive outcome.  She went on to tell me how some families stick with you and she was so happy to hear the good news.  We talked a little about that night, since I don't remember much.  If you are ever at St. Agnes and need an exceptional doctor, ask for Dr. Dada. 

The moral to this story is - I have learned everything happens for a reason.  The moons were aligned for Dr. Dada and I to have some closure with the first night of this journey.

Be CORAgeous!

Ice Cream at 2:00 am?

Wednesday, December 7, 2011 11:19 AM, EST

written by Heather Dalik

Ice cream at 2:00 am?

Ice cream at 2:00 in the morning only means one thing.  You are in the ER.  I heard the croup bark at 12:30.  Within minutes, Andrew was nearing distress.  911 and off we go.  Sorry to everyone in the neighborhood that the ambulance woke up.  I suppose you are almost used to it by now! 

Andrew recovered very well with a nebulizer treatment, steroids and several hours of cool mist and it was time to go home. So, I had to wake up Jeff to come get us and my Mom to sit in the house with the sleeping girls.  "Is it morning?", Andrew wondered as we were leaving. 

The fight or flight instinct is a wild ride.  Although, I knew this time wasn't as bad as the last, he can turn so fast.  Until his breathing normalized, I was terrified.  Today, we are both exhausted, emotionally spent and spending the day hanging out with our littlest pal, Cora.

Cora's testing yesterday seemed to go well but I won't have the official results until tomorrow.  Short of the tech nearly coughing up a lung in front of Cora (germs, germs, germs) and me having to "politely" remind her that she should have a mask on, it was uneventful.  I even used one of my coveted valet passes to ease the stress of the day.  Valet is a serious luxury! 

Cora' is becoming such a toddler.  As a result of our outing last week, she is obsessed with the "neigh".  I have cleared with Nancy that touching a horse would be fine so I am working on finding a horse we can visit on nice days.  We talk all day long about horses, we draw horses, play horses and feed the horses ice cream. 

I mentioned a while back that Grace and Grandma made doll ponchos and doll pajamas to sell, with the money raised going to support a family living in the transition house.  Grace has raised $200!  Thanks Grandma.  You will be happy to know nearly everything you made is gone. Grace is on top of the world and can't wait to go shopping! 

From one exhausted Mommy,
Be CORAgeous! 

Long Day!

Monday, December 5, 2011 10:07 PM, EST

written by Heather Dalik

Today was a super, very, unbelievably long day.  We went to clinic in the morning, just for blood counts.  Between the parking garage, broken elevators, and a toddler who thought we should stay and play, we were gone 2.5 hours.  We got home just in time for lunch and nap.  I had to wake Cora up to go back to clinic for our appointment (another three hours) with Sama, our fellow from the first night at Hopkins.  She has been following us since July and wanted to see us a few more times.  Seriously exhausting and inconvenient, but I did it for her.  She is a student after all, and I am a natural born teacher. 

Cora's cyclosporin levels are 101.  Last week they were 50 so we changed the brand of medication.  Nancy seemed relieved to tell me she thought the new medication was working.  Tomorrow, Cora will have a routine ekg and echo to make sure the chemo didn't damage her heart.  The last time she had this done they used a light sedation, which she had a reaction to.  It happened to be an hour after the earthquake and I was at home with the terrified kids.  We were told nothing would go wrong and Jeff could handle the testing.  BUT, there is a 1% chance of a reaction.  Yeah, Cora fell into that 1%.  When Jeff called me, I pictured my baby clawing her eyes out, screaming, thrashing around.  It was horrible and she won't be sedated tomorrow. 

You might remember my request for help finding lion ornaments.  Thank you so much to everyone who sent us lions.  I think we have every lion ornament out there.  I received the most amazing painted lion ball ornament from my friend Jody from Off the Wall Painting.  She paints murals, stools, bow holders and things like that.  She knows how much I love things handmade so she painted us a lion.  Naturally, I love it.  Then, another talented artist and I worked together on a clay lion.  She created another amazing ornament for Cora's tree.  One thing lead to another and she is offering the ornaments to you, Cora's fans.  The best part is she has agreed to donate $7 of each ornament sale to The Believe in Tomorrow Children's House, where we stayed after Cora's bone marrow transplant (often referred to the transition house).  Each year when you hang the ornament on your tree it will remind you of Cora's courage.  Here is where you can get them -
http://www.etsy.com/listing/87733225/be-corageous-lion-ornament-fundraiser

Please pray for an uneventful test tomorrow, positive results, and a happy afternoon.

Be CORAgeous!

"I go Bye Byes"

Friday, December 2, 2011 9:36 PM, EST

written by Heather Dalik

"I go Bye Byes"

This week has been so uneventful.  Our clinic visits have been quiet and Cora continues to progress.  Today is day 91, post transplant.  December 11 is Day 100, post transplant.  That is a day to celebrate - so they say!  So, what happens on day 100, why all they hype?  Nothing happens, no whistles blow or parade comes down the lane.  Cora isn't magically better with a strong immune system.  Day 100 simply means, she made it to day 100.  An amazing feat to be celebrated!  We will still celebrate the day with an unlimited amount of icecream.

Cora and I had an amazing morning.  In one of my internet searches for information (I think that evening I was looking for a group for Grace and Andrew), I stumbled on the Wellness House in Annapolis.  It is a cancer support house.  I emailed and basically said "Will you help our family?  There isn't anything out there for bone marrow transplant families without cancer."  I talked to Tecce early this week and decided that I would take Cora to the house on Friday, since no one else would be there.  Remember that the ONLY place Cora has been in 4 months, is clinic.  So we got ready this morning as usual, Cora chatted about seeing "Nancy, Malky, Baby (Ava)" on our drive.  When we pulled down the long driveway leading to the house, she was beside herself from her first sight of the horses.  "Oh wow!  Neigh Mommy, Neigh.  Neigh yummies (one was eating), Wow, Neigh Mommy, squeal, Neigh, laugh, Neigh".  Teece entertained us for nearly two hours.  Just like everyone else Cora meets, she was enamoured with Cora and her smile.  Cora was a good girl and kept her mask on until she wanted a snack.  Cora played in the doll house, looked at the horses and did a little playdough (She is completely obsessed with playdough!) 

The best part was when we were driving out the gates, Cora said "That was fun, Mommy".  Need I say,  I cried.  It was Cora's first outing in 4 months.  I was a wreck about the possible germs and exposures but it was fine.  We are going back on Tuesday for a reiki session with "Ace and "An". 

The next best part - We were eating dinner and we always tell about our day.  On her own, Cora started "Ace, I (big smile, proud chest, pat on chest) went bye, bye".  As if to say, I actually went somewhere too!  Then, she told Grace and Andrew about her visit.  Yes, we could only understand every third word but she relayed her visit, no detail left out.  She ended it with "It was fun".  I remember thinking as I was driving home, fun, really, fun?  Sister, you don't even know what fun is! 

Many people have tried to make me feel better about not being able to provide Cora will all the experiences I normally would.  The common message is - she doesn't know what she is missing.  I have been holding onto that but today is proof that she does know there is something more.  Yet, the simplicity of today was "fun".  I long to create more "fun" moments for her.  She was so happy the rest of the day. 

Please pray for our CORAgeous little girl.  I should mention that her anti-rejection medication levels will not stabilize.  Today Jeff drove to the Hopkins pharmacy to get another medication to try.  We need these levels to stabilize right away.  Please pray that this medication works. 

Be CORAgeous!

There is a fungus among us!

Monday, November 28, 2011 1:34 PM, EST

written by Heather Dalik

There is a fungus among us!

I am sure my sister is laughing aloud at the today's journal title.  "There is a fungus among us" is a poem title and one of the sayings my mother is known to spew out at random times.  However, it best describes our clinic visit.  Thankfully, Cora's tushy issues didn't turn into anything which required a hospitalization.  Nancy decided today that Cora has a fungus.  10 days ago she went off the anti-fungal medication.  Since it isn't causing any problems for Cora, we aren't going to put her back on the medication.  I am just to put a prescription cream on her tush with every diaper change.

My friend said to me a few weeks ago, every time nothing happens from a supposed something, you will relax a little bit.  So true, but I am exhausted from the week of worry.   

We got to see lots of our pals in clinic this morning.  You can imagine the morning after a holiday is a little busy there.  Someone donated handmade hats so Cora got a new hat, which she loves.  She wears hats all the time, even in the house.  She even came home from clinic and played by herself in the playroom.  This is a huge milestone.  I have been forcing "Cora's playtime" every day.  I gate her in the playroom  and I hang out in the kitchen, pretending to be busy.  I set the timer for 10 minutes.  At the end of the 10 minutes, I play with her.  Usually Cora screams for the first 9 1/2 minutes, kicking the gate, screaming for me.  Today, she went into the playroom and played for 20 minutes, by herself!  She made "icream" (icecream) and "nummy's" for "huuoney" and "hat dolly".  I love hearing her new word - honey.  It is so cute to hear her draw the word out.  Still not sure what it means or who honey is, but at least we figured out what she is saying.  Alas, what wonderful adventures in toddlerhood. 

We don't go back to clinic until Thursday, unless her tush gets worse.  Please continue to pray her Cora's healthy body!

Be CORAgeous!
Heather 

Happy Thanksgiving!

Thursday, November 24, 2011 8:09 PM, EST

written by Heather Dalik

Happy Thanksgiving!

Today, I am most thankful that Cora seems to be fighting the infection.  We had a great dinner and pie that the kids are still talking about.  Aunt Sooz and Uncle James made berry pies for desert.  Grace and Mommom made a pumpkin pie.  All three of my kids love pumpkin pie, which is weird because I don't like pie at all so I never make it.  We had a late dinner and the kids amused us at the table as usual.  Cora's new favorite word is honey, pronounced something like "hounney" - only in Baltimore, hon. 

We played our new favorite game "Box of questions for Thanksgiving", which is nothing more than conversation starters.  I handed out the cards (those that have played games with Grace know, she is a terrible cheater) ironically Grace got the best question so she went last.  Her question was "What are you most thankful for this year?"  How perfect!  Andrew went first, "Cora" was his answer, which made me cry.

I know I have a lot to be thankful for but, quite frankly, I am not there yet.  I am still stuck in the horror of this roller coaster.  I am still taking it one day at a time and today I am thankful that Cora is a tough cookie.  I made a mental note today that next year's journal will be filled with all the things I am thankful for. 

Saturday is the St. Phillip Neri Fall Craft Show (6401 Orchard Rd, Linthicum, MD) from 9-3.  Grace and I are planning on being there selling our wares.  She will have a table full of American Girl doll clothes that Grandma helped make.  The money she makes will buy Christmas gifts for children/families living in the Believe in Tomorrow House, where we stayed after the transplant.  Please stop by if you are out and about.  You are sure to check some items off your holiday shopping list since there are over 90 vendors and quite a few new vendors. 

Thank you for all your prayers.  I can feel them working.

Be CORAgeous

I will not freak!

Wednesday, November 23, 2011 4:57 PM, EST

written by Heather Dalik

I will not freak!

Don't freak out, don't freak out, don't freak out - that is what I have been telling myself for the last 5 hours.  I emailed a friend - "talk me down", I said.  Cora's clinic visit was uneventful.  They always check her tush for signs of infection but didn't today and I forgot.  We were late getting home so Cora was ready for a nap.  I changed her diaper and cleared off the tush paste that we use to prevent infection.  Instant flight or fight response - rectal fissures and infection.  Ugghh, was all I could think.  We have made it so far and now this?  This type of infection typically moves quickly to fever and hospitalization.  My second thought was, thank god this isn't Christmas Eve.  I made a frantic call to clinic and put Cora down for a nap.  I paced around for two hours while I waited for a return call.  Finally, Nancy called.  We reviewed what to look for, increase in the fissures or infection, fever, pain, etc.  She told me that these things are likely but MAYBE her ANC is high enough to fight this infection.  One of the things we can do to speed healing is frequent baths.  I have already given her one bath and will do another one after dinner.  I held my breath as I took her diaper off after nap.  Everything was exactly the same as three hours prior.  That either means the infection will move slow or she is able to fight it off so far. 

Please call in the prayer warriors to pray for Cora tonight.

Be CORAgeous!

What's up?

Tuesday, November 22, 2011 6:13 PM, EST

written by Heather Dalik

What's up?

I was talking to my Dad yesterday "So, do you know you haven't written anything in a week?  How am I supposed to know what is going on?"  My response "Dad, nothing is going on.  There is nothing to write.  Cora continues to do well." 

Cora is somewhere around 80 days post transplant.  She was taken off her anti-fungal last week.  That will typically mess up her cyclosporin (anti-rejection medicine) but so far so good.  Monday's blood numbers were good.  Grace is going to clinic with me tomorrow.  It will be her first time and she is really looking forward to it.  She is very interested in the medical end of Cora's illness and thinks she will either become a doctor or a dog trainer when she grows up!  Can you guess which one I am pushing?

We have halted potty training.  A few nights ago, Cora was forever scarred and will use a diaper for the rest of her life.  Without going into the graphic details that Grace and Andrew will remember for a long time to come, Cora had a huge accident while in panties.  The gag reflex kicked in and whole family was in hysterics, except Cora who was crying.  This is all fine with me because who really wants to potty train right before Christmas. 

The kids and I are enjoying the rainy week at home.  Today, Cora was introduced to fingerpainting. I left the paint and paper on the table last night forgetting Cora would see it in the morning.  Cora was instantly interested.  I really needed an hour to cut fabric for Show Choir/Grace.  Cora was NOT going to wait.  SOOO, Jeff introduced Cora to fingerpainting.  Truth be told, Jeff does not like paint messes at all.  Painting is usually a mommy job.  I noticed it was very quiet so I snuck into the kitchen.  All three kids - at the playroom table, art smocks on, paint in cups - everything was under control and very quiet.  I was able to snap a few super cute pictures, which I promise to post later.  Cora's art will be on sale at the next event.  She created 10 or so masterpieces today and I am sure tomorrow will be more of the same. 

I took Andrew out for a haircut today while the girls stayed with our beloved Rachel.  Given that I don't get much socialization, I enjoyed spending 45 minutes with my friends at Pigtails and Crewcuts.  They are such a wonderful group of women! 

One more thing - I have made it a point not to name people or make public thank you's.  I have learned that people really don't like when you do that.  BUT, today we received a very generous card in the mail that wasn't signed, no return address, no postmark.  Was it you?  If so, thank you from the bottom of Santa's sack! 

Be CORAgeous!

Mid morning happy hour!

Monday, November 14, 2011 1:55 PM, EST

written by Heather Dalik

Mid morning happy hour!

This morning was Mommy Happy Hour at clinic.  This is the first Monday Cora has been out of isolation.  We got to see all our friends from inpatient!  It was a great morning and Cora didn't want to go home. 

Our appointment was uneventful and I am hoping for a calm week.  Wednesday is day 75, post transplant.  Wow!  Writing it makes it real, we are almost to day 100.  On day 75, one of the anti-fungal medications will be discontinued.  This could mess up her anti-rejection medication levels so there are likely to be more frequent clinic visits in the next two weeks. 

I have been meaning to share this video journal that Megan put together for me.  Turn up the volume on your computer and get your tissues.  It really drives home what we have been going through and how so little of our life is normal right now.  It is up to date through late October. 

http://video214.com/play/WWY1Q9cL9ZkyZX6h54AjJg/s/dark

Everyone has been asking about Andrew.  I have to assume that his cold is allergy based.  He isn't getting better or worse, which looks like allergies to me.  Cora also has a slight runny nose but, again, isn't getting better or worse.  Keep praying that her body remains strong and she able to fight off infection. 

Enjoy the sunshine and warm weather today. 

Be CORAgeous!

It's all fun and games until someone gets...

Saturday, November 12, 2011 5:57 PM, EST

written by Heather Dalik

It's all fun and games until someone gets..

It's all fun and games until someone gets sick!  In a moment of serious uncertainty, I decided to take my inventory out to a show today.  The ladies in charge of this show, work so hard to promote it so I knew it would be well attended (attendance = $$)  I was seriously anxious and nervous about being away from home all day.  I have to be away from Cora and nothing is going to go wrong - right?  Then, the babysitter got a cold!  So, late last night Jeff and I made a plan with him staying home part of the day.  Rachel came this morning, then Jeff, then I ran home from the show so Jeff could go back to work. 

I had a mini meltdown on the way to the show, which I have grown used to.  I just let it go and eventually the waterworks will stop.  I got myself set up and started visiting with friends.  It's just tough being the sick kid's Mom.  Not a role I ever thought I would have.  Anyway, I made it through the show with the help of a seriously loyal friend.  Sales were great and I have only a few ponchos left!   Yeah!!

I was privileged to spend a few hours last night with Sarah.  Mostly, I talked and talked.  Our experiences are so fresh and new.  We talked about how it seems so unreal that this is our new life.  Her harbor cruise was sold out and that money will help with her medical expenses. 

Grace had her second sleepover!  I only called once - everyone should be proud of me. 

I may have forgotten to mention that this week we were cleared for a visit from the Grandparents.  Jeff's parents will come and see the kids for the first time since July.  Grace and Cora already have all the dolly's out to play with Grandma.  Andrew got out his cars to play with Poppop.  It is going to be a fun week! 

Can you throw another prayer in there tonight?  I know that Andrew is getting sick.  He is tired, red cheeks, starting to cough, you know the drill.  Please pray for him.  Pray that if sickness hits our house, Cora can fight it off. 

Be CORAgeous!

Thanks for waiting!

Wednesday, November 9, 2011 9:05 PM, EST

written by Heather Dalik

Thanks for waiting!

Thank you so much for waiting patiently so I could share Andrew's excitement today.  A friend from long ago called me last week with the coolest news.  Her 9 year old son had to write an essay about a hero that was under the age of 18 and he wrote about Andrew.  Although Max has never met Andrew, he has been following our story with his Mom.  Max won the essay contest!  Tonight was the awards ceremony, where he and Andrew received citations.  Max's citation was for winning the contest and Andrew's was for being a hero.  The boys were so cute together.  As soon as they met, it was clear they would be good buddies.  On the way home Andrew was talking all about his new friend Max and when could they get together and play legos.  I haven't gotten to read Max's essay but as soon as I get a copy, I will share it with you.  He truly is a special kid. 

Not much to report with Cora.  We have spent the last two days in the house, which is nice.  We got some things organized in the playroom.  She is taking really short naps this week, which makes the afternoon very long.  Maybe not being in isolation tomorrow at clinic will help wear her out! 

Tomorrow, I hope to meet up with Debbie at clinic.  Haven't seen her in 16 years!  Since Cora is off isolation, we might go visit Sarah who is back on the 8th floor for her second chemo round.  I am so privileged to spend Friday evening with Sarah while her friends and family do a benefit cruise.  Any advice on what I do with a 16 year old??

Be CORAgeous!

No more VRE!

Monday, November 7, 2011 8:37 PM, EST

written by Heather Dalik

No more VRE!

VRE is the nasty bacteria which Cora has been carrying around for as long as I can remember.  I guess I could go back in my journals and see how long we have been on isolation but I think it has been 7 weeks.  Finally, today I was told she tested negative.  That means three negatives in a row and we are OUT of isolation, for clinic visits anyway.   Cora will be able to play in the playroom each visit.  She will get to see her pal that she was asking for today.  Every clinic visit will be like a much needed playdate and Cora will be so happy.  I hope this will re-energize me because I don't have to occupy her for so many hours.  Cora will get tested every week so pray that she remains clear. 

Home isolation will continue through March.  No visitors, no playdates, no exposures.  This means no cookie exchange, no Open House after Christmas, no live Christmas tree.  I have to say - who cares.  We are home, as a family, under one roof!

Did you know today is day 67, post transplant?  How did so much time pass?  In the first days after transplant, day 60 sounded so far away.   It has been 100 days since I took Cora to the pediatricians office.  100 days seems so long, yet so short.  Remember, we were supposed to be out of our house 100 days - that seemed like a lifetime.  Yet, on Saturday I was talking to one of the generous strangers about how I was doing.  I was telling her how I feel like I am loosing my sanity, my sense of self, and so on.  She said "Wait, this is all very new.  100 days is nothing.  You are just at the beginning.  You are supposed to be feeling that way."  In that moment, I realized I am being way to hard on myself.  This is still very new.  Cora is not out of the woods.  The stress, anxiety and constant worry is very real.  It is okay for me not to be able to carry a conversation nor want to.  It is okay for me constantly (like every 5 minutes) be checking Cora for fever or signs of infection.  It is okay to not leave her for more than a few hours because she might get sick.  This is still new for me.  Thank you kind stranger who put it all in perspective! 

So, I have a very cool surprise to share but I can't share until Wednesday night.  I can't wait to tell everyone the cool thing that happened to Andrew.  I am busting!!      

Be CORAgeous! 

Why Now???

Sunday, November 6, 2011 8:57 PM, EST

written by Heather Dalik

Why now????

Why now?  Right now?  Why does Cora think NOW is the time to potty train?  I am simply not up for potty training and the mess that comes with it.  Some days Cora is lucky to get out of her pj's for clinic, let alone me remember to bring several changes of clothes.  I spent the better part of the morning trying to cajole her back into the diaper.  She sits and sits on her potty trying to squeeze something out.  She is also obsessed with everyone else's potty habits.  Andrew did give her a big, fat "Not NOW Cora!" when she was investigating what was going on.  I could see those little wheels turning! 

When Grace was 2 she discovered the joys of being naked.  As soon as we walked into the house Grace would remove every stitch of clothing, underwear included.  Threats, bribery, nothing worked to keep that girls underwear on.  Then, my friend Shawn suggested telling her if she didn't keep her underwear on bugs would get in her girl parts.  I remember like it was yesterday the first time I told her that.  Even now, as I write this story, I laugh at how quickly she got those panties on.  Never again was she seen without panties.  So, Grace and I tried that today with Cora.  Cora's response - laughter and a knee slap!  Grace said, "Mommy, she doesn't believe us!"  Even at 8, Grace is afraid of those mysterious bugs.  I left it up to Grace to convince Cora about the threat of bugs.  I have given up on the diaper!  Much to Jeff's chagrin, I had him lug many, many bins of clothes downstairs so I could locate those training panties.  Let the fun begin!!

Speaking of fun, we had another great fundraiser.  The shopping event was super fun!  Heather and her staff from Sweet Minerals is amazing.  I am simply in awe of the generosity of total strangers.  Heather sold 1000 raffle tickets!  The silent auction was unbelievable.  I know she worked tirelessly on this event and it showed.  Thank you to everyone who came and shopped, donated for the silent auction, or helped out in any way.  Also, thank you to the vendors who donated a percent of their sales.  Next time you see me, check out my new bag.  It says "Be CORAgeous - Team Cora".  One of the vendors went above and beyond with personalized gifts for our family.  I know one day my turn will come to take care of a family and I can pay back all the kindness we have been handed. 

Quick update on Alyssa - her rollercoaster ride has come to a level ground.  For now, she will coast along and recover from her infection.  Thank you to everyone who prayed for our little friend.    Please continue to pray that Cora stays infection free.

Be CORAgeous!

an afternoon at clinic

Thursday, November 3, 2011 8:40 PM, EDT

written by Heather Dalik

an afternoon at clinic

Cora had an afternoon appointment today.  It was our first one in the afternoon because our fellow from the beginning wants to see us.  Anxiety, Anxiety, Anxiety all day!  Why am I feeling so anxious?  Really, her counts aren't going to be bad because we are going in the afternoon.  "Nothing is going to happen", I kept telling myself all day.  And nothing happened.  Everything is fine.  All the things we talked about at the beginning of the week, GVHD being the top, didn't happen.  Cora's cold is okay, her splinter is okay, her red cheeks are okay.  My friend told me that the more times nothing happens, the less stressed I will become.  She is right.  However, I hated the afternoon appointment!  We didn't get home until almost 6:00, tired and hungry.  Usually I have naptime to recover from our appointment.  Instead, I had to walk in the house, finish dinner, homework, baths, and some playtime.  It has been suggested that our Thursday appointment will be at 3:00 from now on.  I told our sweet nurse that this won't work for our family or my sanity, which is quickly evaporating.  I don't know how this one is going to work out but I hope it is in my favor.

I don't have Gretchen's permission to write about her daughter Alyssa so I don't want to write much but Alyssa has cancer and was doing well.  Over the last month she has had a series of mishaps and anxiety causing incidents.  It has literally been one thing after another for her, causing her mom to feel and look a little bit like me (you know, slightly nutsy!).  Gretchen has listened to me vent and offered advise like no one else can because we are part of the same club.  Right now she sits at home, terrified her daughter's cancer is coming back.  I wish I had a crystal ball to tell her what was coming.  I can't do anything to help her but to ask all our prayer warriors to pray for Alyssa and Gretchen. 

I also realized that my Debbie story took a back seat to Andrew's car accident.  Even though it will make for a long post - here goes.

If you go back in my guestbook you might have read this post -
Monday, October 17, 2011 10:37 PM Hi from Debbie McMahon.  We have a daughter, Sarah, who was diagnosed 3 weeks ago today at cmsc 8 at Johns Hopkins with AML.  Sarah is 16.  

Sarah' s counts are down to 0 then are rising today to 23!  Our site is www.caringbridge.org/visit/sarahmcmahon

Deborah McMahon

16 years ago I was a nanny for a family, Dan and Deb McMahon.  Sarah was 3 months old at the time.  You can imagine my horror to read this entry.  Right away, I put the pieces together but Debbie had no idea it was me.  I posted on her caring bridge and stalked my email for days.  Nothing. Then, Debbie posted her email address for someone else who was trying to get in touch with her.  You know I cased that email and emailed her.  I so badly wanted to take a trip to the 8th floor and see if it was the same family but Cora is on isolation so I couldn't go unless I got a babysitter.  Plus, what am I going to say when I bust into the hospital room and it isn't them!?! 
Finally, after a week of waiting, Debbie emailed me.  It is the same family, which is devastating.  That beautiful baby girl is fighting for her life.  Here is Sarah's facebook page so you can read more about her fight.  https://www.facebook.com/pages/Support-Sarah-Stand-Up-to-Leukemia/162426570512537

Right now there are four families that are weighing heavily on my heart.  Please include these families in your prayers for Cora.

Saturday there is going to be a Be CORAgeous Holiday Shopping event and fundraiser.  Here are the details or you can email me for more information -
Sat, Nov 5   12-6

La Palapa Mexican Grill & Cantina

8307 Main Street

Ellicott City, MD

Check out the invite for a list of vendors.  I am going to be checking out the Tupperware lady.  Lame, but all I want for Christmas is new plastic to store baking supplies.

Sorry for the long post!

Be CORAgeous!

Everyone is okay!

Tuesday, November 1, 2011 7:44 PM, EDT

written by Heather Dalik

Everyone is okay!

Today I got to take one of those calls NO mom ever wants to get.  My step-father has been picking the kids up at the bus stop to help me out.  At just the moment they should have been in my driveway, the phone rang.  "Heather, come quick to Twin Oaks and Camp Meade.  We were in an accident"  The rest of the details are sketchy.  I did call the shop and Simone answered.  I said something like "Tell Jeff to go to Camp Meade and Twin Oaks.  They were in an accident".   I remember Simone saying "Heather, calm down".  That 1/4 of a mile drive was the longest drive of my life.  The road is straight and at some point, the intersection becomes visible.  I was holding my breath to that point.  I remember telling myself to breathe when I saw there was no light rail train involved and Howard's truck was upright.  Andrew was nearly hysterical when I got him out of the truck.  I couldn't calm him down and the paramedics needed to chill out for a minute about whether he needed to be transported or not.  Jeff got there and put Andrew in my car to calm him down.  About 20 minutes later, Andrew was still not himself and the abrasion on his forehead was getting worse.  Apparently, Grace's empty booster seat flew over and hit Andrew on the forehead.  The decision was made to transport Andrew to the hospital for evaluation.  The good news is Andrew has a huge headache and will have an equally as large bruise on his forehead.  He earned himself a day off school tomorrow.  My step father is badly shaken, but okay.  His truck, Stephanie's van (yes, he collided with our neighbor) and the other van that hit Howard are not okay. 

Oh, let me share this little funny in all of this.  Remember, our family graced the front page of the Gazette a few weeks ago.  In the ambulance the medic says "any surgeries in the last three months"  Um, yeah, he saved his sisters life with his bone marrow.  "Wait, you guys were on the front page of the paper in white shirts with lions on them.  (To Andrew) Can I have your autograph?"  That was Andrew's 15 minutes of fame! 

So, I am starting to wonder why I am being tested so heavily.  Today, my embroidery machine broke.  My embroidery machine makes me spending money and Christmas is coming!  4 weeks until it will be fixed.  I think this is a sign to stay focused on Cora's care.  After the events of today, I will not dwell on the stupid machine or its ability to break down just when I need it. Focus. 

Be CORAgeous!  (although I don't feel so corageous right now)

"I lion"

Monday, October 31, 2011 8:57 PM, EDT

written by Heather Dalik

"I Lion"

We went from "I no lion.  I hat (pumpkin hat)" to "I lion, gggrrrr"  all in a day.  This morning Cora would have no part of putting on her lion costume for clinic.  She insisted on wearing the pumpkin hat that she hasn't taken off for two weeks.  At clinic Nancy and I talked about how to tackle trick or treating.  I wondered would Cora be less exposed to germs answering the door with Jeff or out in the neighborhood with me.  My plan was to put her in the wagon, lion paws on her hands, mask on, hand sanitizer in the cup holder and a sign that said "keep away".  I carried out my plan but left off the sign and it worked out fine.  I really didn't think Cora would put on her costume.  Grace even tried to bribe her with a tutu but that didn't work.  Both big kids were dressed and hyped up.  I don't know what came over Cora but she said "lion on" and that was the end of it.  She got her costume on, mask on, and into the wagon she went.  We were able to keep our long standing tradition of trick or treating with Cora's godmother and her girls. 

We had a quiet weekend and I actually got out of the house twice without kids.  Wow!  Sunday I worked at Baldwin Hall setting up for my favorite two week craft show. Being around all that creativity made me feel like I need to get back to work. 

Not much to report from clinic today.  We are doing two appointments this week.  Cora had her port accessed for the first time today and that was horrible.  I guess I didn't really understand how the port works.  I put on a numbing cream and a little while later they stick a fish hook in her chest, at least that is what the needle looked like to me.  She screamed and screamed.  Lauren said something wasn't right with the access.  Finally, she was able to get it accessed and Cora stopped screaming.    I hope that every access isn't like that.  I will regret having her lines removed. 

Many of my friends have emailed to ask, "Who is Debbie McMahon?  I see her guestbook posts.  Do you know her?"  I promise tomorrow I will write and tell the whole story of Dan, Debbie and Sarah.  It is an emotional tale of friendship.  I can't wait to share it. 

Be CORAgeous!

Grace said it!

Wednesday, October 26, 2011 8:30 PM, EDT

written by Heather Dalik

Grace said it!

This morning I got Cora out of her crib, just like every other morning.  I looked at her the same way I have been looking at her for the last two weeks.  Something is different.  She said good morning to "An" and "Ace".  After kissing her sister, Grace said "Mommy, Cora doesn't look like Cora today.  She doesn't look like herself.  Huh, maybe it is because she got her lines out and that is a big deal."   and off she went, leaving me holding Cora and speechless. 
My 8 year old just articulated exactly what I have been struggling with for the last two weeks!  Cora looks different.  I can't really explain it but she looks different.  Maybe she has moved from baby to toddler.  Maybe she is holding onto too much fluid.  Maybe she is loosing weight.  Maybe she is getting sick.  Maybe her eyes are changing color (yes, I asked the doctors if this was possible at her age or from the medications.  Short of telling me I was nutsy, the answer was no.)   I decided that all the emotion of what we are going through is taking over my mind and Cora is the same child, with the same looks, and maybe I am nutsy. 
I do know that one of the medicines Cora takes makes hair grow all over your body.  Cora was a blond so I figured the hair would be blond.  I also made the decision to shave Cora's head.  Her hair has been falling out for weeks.  Every day I am covered in long, blond hairs.  She had nothing left but a slight comb-over but her new hair is starting to come in so I decided it was time.  My sweet friend came over and shaved Cora's head.  Holly has no idea how much her gentleness with Cora (and me) touched me.  Shaving a head is an every day thing for Holly but not for me.  I somehow got through it without crying and also felt glad we did it when we were done.  Then, we gave the few hairs to the birds for their nests.  During dinner when the kids were sharing about their day, Grace asked Cora if she got her hair cut (she even rubbed Cora's bald head, which was cute)  Cora told Grace "hair, birdies, hair all gone".  This little girl is amazing!   
So, where am I going with all of these rambling stories - Cora looks different!  When we got rid of those last, few white hairs, we were able to see why she looks different.  Her hair is coming in dark!  Her eyebrows and eyelashes are dark, which is making her eyes darker. Oh, and the hair that will soon cover her entire body is dark!   At least that mystery is solved!
Other than a 3 hour nap, today was an uneventful day for Cora.  We go to clinic tomorrow for a blood draw.  We can't access her new port until next week so tomorrow's blood draw will be from her arm.  Not pleasant but it will be over fast.  She will get her bandages off tomorrow and maybe get to take a bath tomorrow night.  I hope to get some pictures of the "new" Cora posted tomorrow.  Please continue to pray that Cora stays free of infection.  Please also add a pray for the kids we have met during this journey.  Two of them have completed their chemo treatments and will be getting their ports out this week.  We are thrilled for them.
Be CORAgeous!

Thank you!

Tuesday, October 25, 2011 6:40 PM, EDT

written by Heather Dalik

Surgery to remove Cora's centra line and replace it with an under the skin port, went well. Her wake-up wasn't so pretty and that has continued through the day. I felt like she was getting a fever so I took her temp and nothing to report. At the dinner table tonight I asked her what was wrong and she pointed to her neck, right where the incision is. She must be in pain so I gave her tylenol. Please pray for an uneventful, sleep-filled night.
My Dad was released from the hospital today. They don't know what caused the incident or really what happened. That, in its self, is scary. For now, I am not hoping a plane to Tampa. Thank you for the prayers for him.
I am constantly in awe of the support of our friends. All the kids bed linens are washed and flea free, thanks to a friend. My grass is cut, thanks to a friend. My kids had a great dinner, thanks to a friend. Another supporter called yesterday with advice about how to get rid of the fleas, hopefully without using chemicals that could harm Cora. I have done everything he suggested so we will wait and see if it worked. Keep your fingers crossed.
The emotional tole this journey is taking on me is starting to be obvious to those around me. Thank you to everyone who has held me up this week.
Please pray that Cora remains infection free, especially after all that she was exposed to today at the hospital.
Be CORAgeous!

a few prayer requests

Monday, October 24, 2011 12:16 PM, EDT

written by Heather Dalik

A few prayer requests

This morning in clinic I was writing my journal for today in my head - all happy, happy, happy! The Cruise for Cora was amazing. The support was unforgettable. There are so many people to thank and now I can't remember a single one of them! As soon as I walked in the door from clinic, my Dad called. He is in the hospital. They really don't know what is going on but it is heart related. He might have fluid around his heart and is waiting on a second opinion. Ordinarily, I would have been on the next plane to Florida. I know life is a test of strength but this is getting a little ridiculous!
I promise to circle back around and say thank you's to everyone who participated in the cruise.
Cora is getting her central line replaced with a port under her skin. This will make our life slightly more normal. Cora and I have to report to Hopkins tomorrow morning before 6:00 (a.m.!!!) Surgery is scheduled for 7:30 and should be under an hour. We will post on facebook when she is out of surgery.
In other news, we have a flea infestation at our house and bike shop! Seriously! Grace and I are itching from head to toe and now Cora has bites. She has no immune system to fight the bacteria fleas carry so we have to flea bomb the house. More chemicals into our environment.
I am trying to take all the little things today in stride. My mood from last week has lifted, most likely due to three days of exercise last week. What a recharge for my soul! I know my Dad is going to be okay and Cora will do fine in surgery tomorrow but pray for us anyway.
Be CORAgeous!

More good news!

Friday, October 21, 2011 10:39 AM, EDT

written by Heather Dalik

The good news just keeps on coming. Cora will have her central line removed on Tuesday and replaced with a port, which is under the skin. This is good for many reasons, including a much lower risk of infection. She also will be free of her "tails", which she has been making grabs at lately. I think she is most looking forward to a bath! Last night, I wasn't paying attention and she was up to her elbows (with pj's on) in Grace's bath water. The crisis that ensued about removing the wet pajama's and being locked out of the bathroom was so "toddler".
We saw Cora's main bone marrow doctor today who reiterated how lucky we are. When he said "You have no idea what BMT parents go through" I could tell he meant it in a way I will never know about. Cora's counts are still climbing on their own. Her platelets are normal and now I can allow those throw-down tantrums and time outs on the step. Joys of toddlerhood!
Tonight is Cora's benefit cruise. We will leave all three children with our highly reliable babysitter for the evening. How many times do you think I will call and check in? I suspect someone will take my cellphone from me upon boarding the boat. I am looking forward to a night out with Jeff and 140 of our supporters. It is going to be an amazing evening, filled with surprises.
Being locked up in the hospital for so many days has made me appreciate mother nature. Be sure to get outside this weekend and enjoy the change of seasons.
Be CORAgeous

Speechless!

Monday, October 17, 2011 6:12 PM, EDT

written by Heather Dalik

Speechless!

I came home from clinic today all set to have a giant pity party. I am tired of all of this. I am tired of not being able to meet my kids needs. I am tired of Cora demanding to be on my hip every second of the day. I am tired of remembering all the medications and schedules. I am tired of isolation - which I found out today will continue for another four weeks! Oh, and I am just plain ole' tired! BUT, when I pulled down the driveway, I realized I had to postpone my pity party.
Childs Landscape Contractors came today and did amazing things with my garden. I love working in the garden, getting rid of weeds, cleaning up the flowers, the smell of mulch. The garden was one of the things that drew me to this house in the first place. My garden is so large that I work every single weekend from April - October. I also spend mornings out there before Jeff goes to work. It is a labor of love, which I love to hate. I haven't been able to work in the garden since July. I am supposed to be "letting things go" but letting the garden go, meant letting go all of my hard work. The weeds have had a huge party in my absence and I could almost hear them mocking me. Well, today Child's Landscape got back at the weeds and made me the happiest gal on the block! Oh, and get this - the owner donated, yes DONATED, the entire days work. I don't know Harry and didn't get to meet him today. When I meet him, I will tell him how he has the hardest working men I have ever met. They took away more bags of weeds than I could count. They edged, pruned and remulched every single flower bed in our yard. I sat in the house, cried. Our house and garden looks beautiful.

Then, my friend came over to drop off dinner and give me an hour of therapy! The world needs more people like Nicole, and let me tell you, she makes a mean pasta dish that my family loves!
So, my pity party is officially postponed until a later date.

Several of you have asked about Andrew's response to the bone marrow news. He spent the day hugging me and saying "I love you". He is so much less stressed. The moments I see him interact with Cora make my heart swell. He has figured out how to make her laugh and make her happy, which, considering her age, is a huge thing.
Please continue to pray that bacteria Cora has stays in her digestive system and doesn't go to her blood.
Be CORAgeous!

Our Little Miracle!

Friday, October 14, 2011 11:32 AM, EDT

written by Heather Dalik

Our little miracle!

More good news today at clinic. Here is what the report says -
Note: The marrow is normocellular (90%) for age. There is trilineage hematopiesis. The myeloid:erthroid ratio is appropriate (3:1) and both lineages show a full range of maturation. Megakaryocytes are normal in number nad morphology. PAS strain is reviewed. The associated aspirate is aspiculate but shows trilineage hematopoises will full maturation. There is no evidence of dysplasia or increased blasts.
Yeah - right! What does that mean?? One of the tests is for cellularity, how full the marrow is of good cells. Sort of like a toilet tank that has to fill up after being flushed. Sometimes it takes a while to fill. 50% would be expected, 75% good. Cora is 90% filled up! Amazing! Her body is also making white and red blood cells and platelets on its own. This is much better than the typical case on day 42, post transplant. Cora and I had icecream for lunch to celebrate!
I asked Nancy if I could start to work out the constant tightness in my chest, lift the fog of fear, and live again. She agreed that I could, as long as I am always looking over my shoulder. At this point, a cold or the flu would put Cora in the hospital but most likely, not be life threatening. Cora is still house bound for another 6 months and cannot have visitors, especially children. I see this as a small price to pay for the successes we are experiencing.
Don't forget about the cruise next Friday. If you haven't gotten your tickets, there are still a few left.
http://www.becorageous.blogspot.com/
Can't wait to see everyone on Friday!
Be CORAgeous!

95% Boy!

Wednesday, October 12, 2011 1:25 PM, EDT

written by Heather Dalik

95% boy!

Cora is 95% boy! This day is almost as happy as when we found out Andrew was a bone marrow match. I was expecting to find out the % of bone marrow that is Cora vs. Andrew on Friday. I was calm and not nervous when I arrived for our appointment. I have learned when doctors start the sentence with "So," something is coming. When Nancy said "So...", my heart hit my stomach (hold in the the throw up) and I immediately thought - ugh infection! But alas, good news and a few days early. 95% or greater of the marrow in Cora's body is Andrew's. There are two tests that can be done to determine the amount. One gives an exact percentage and the other gives numbers like 90% or greater. 95% of greater could mean 99.9% or 95.5%. No matter, it is safe to say the bone marrow transplant worked. There are still a few test results that haven't come back but all the results point to success.
Cora's blood numbers actually went down today, despite the good news. This is to be expected and made for another long clinic day. She got an infusion of GCSF, which boosts the ANC. She appears to be infection free as of this writing. We are praying that the GCSF boost will help her fight an infection that might be developing. Nancy was quick to remind me that the risks of infection are still very high and will be for the next 6 months.
Did you know today was day 42, post transplant? Today Nancy and I talked about the removal of Cora's central line. It will be replaced with a port, which is under her skin. Depending on how she continues to progress, this will be done at her day 60 bone marrow biopsy. I am already starting to look back and not believe we made it this far.
One more piece of cool/good news. Our family is on the front page of the Gazette today! They featured our family to help with cruise ticket sales. Kids all over Linthicum are going to be fighting to read the Gazette today. Here is the link if you want to read the artice;
http://www.mdgazette.com/content/linthicum-boy%E2%80%99s-marrow-saves-his-young-sister

Grace and Andrew are due home any minute. I can't wait to tell Captain CORAgeous the good news. I hope he jumps into my arms again!
Be CORAgeous!

6 1/2 hour visit!

Monday, October 10, 2011 6:04 PM, EDT

written by Heather Dalik

6 1/2 hour visit!

6 1/2 hour clinic visit! I am pretty sure that is a record breaker. I am so glad to be back home. Our morning started late because none of the elevators at Hopkins were working. We got our bloodwork and initial exam. No wheezing but more docs come to take a listen. Then, we noticed something blue/purple on Cora's arm. Right before our eyes is was spreading, sort of like a bruise but not really. To say I was freaking out, would be an understatement. No one knows what it is. It is growing every time we turn out backs. One doctor, two doctors, three doctors.... Then, one says "get me an alcohol pack". All the others say, it isn't going to come off (I had already done the spit test and it didn't change the coloring.) Yeah - you guessed it, the mystery blue/purple wiped right off. We have NO idea what it was. There isn't anything inside her white shirt, nothing on her hands or mine. One doctor said "who cares what it was. It is gone." Sure, now move onto the breathing.
We were scheduled for a CT scan of her chest, which was very traumatic for both Cora and me. We sang "Skinny Markiny Dinky Dink", which has become "our song" to get us through the scaries. It was about 3:00 by the time we headed back up to our isolation room. We waited there until 4:30 to hear the scan was clear. Breathe a sigh of relief but I am not convinced something isn't brewing. Cora was asleep in her carseat before I pulled out of the parking space.
Every day I thank the stars that Cora won't remember any of this. No memories before age 3, I can hear my child development teacher telling us that. No memories before age 3. I hope this is over by the time she is 3.
The big kids are outside right now and Andrew is trying his hand (or should I say foot) at riding his bike without training wheels. This is a huge step for Captain CORAgeous. Grace is skating beside him cheering him on.
Please continue to pray that Cora's body fights whatever infection might be lurking.
Be CORAgeous!

prayers, please

Sunday, October 9, 2011 9:57 PM, EDT

written by Heather Dalik

Prayers, please

Asthma doesn't scare me. Wheezing doesn't scare me. Bone Marrow transplants almost don't scare me. A day 37 BMT, who is wheezing scares me. Cora was breathing heavy yesterday and wheezing this morning. She didn't respond to her normal medications so off to the ER we went. A hospital visit and a few nebulizer treatments later, we were home and just in time to celebrate birthdays with our family.
All I wanted to do today was get out in our flower garden and work the earth with the big kids. Get back to nature, feel the warm soil and listen to the delight of Grace and Andrew when they find a worm. I learned during pregnancy that kids will always throw your plans off. My new normal includes no plans and I am slowly starting to accept this. I do feel so lucky that a land scaping company has offered its services to clean up my abandoned flower beds. I hope the flowers forgive me for subbing out the work.
Please include Cora in your prayers over the next few days. She is, no doubt, brewing a virus. If my instinct is correct, this will be her first post transplant illness and we have no idea what to expect. She has a clinic appointment tomorrow morning so I will update you as needed.
Please pray!
Be CORAgeous

Birthday Wishes

Friday, October 7, 2011 12:35 PM, EDT

written by Heather Dalik

Birthday Wishes

Cora gave me two birthday presents today. She greeted me this morning with a smile and, prompted by Daddy, the sentence "It's a birthday" or something like that. She clearly knows it is my birthday today and so does her body. Today in clinc we got a wonderful surprise. Her ANC, those neutrophils which we are always watching, were around 500 on Wed. Nurse Nancy told me we would have to do a GCSF infusion at our appointment on Fri. Much to everyone's shock, Cora's ANC went to over 2000 on its own! I asked to have her blood re-drawn just to sure!! We were happily on our way two hours later - a short clinic visit and another present because who really wants to spend their birthday at Hopkins.
One of the birthday privildges in our house is being able to pick all the meals. I didn't eat breakfast, although Grace offered to make me a special breakfast. Lunch - I chose Doritos (don't ask WHY they are in the house) Dinner will be Chipolte salad that I am currently addicted to. For all those that are concerned, I am starting to eat again. I will have the weight back on in no time!
Just to mention, tomorrow is the Kinder Farm Park Fall Festival. The park is located off Jumpers Hole Rd in Severna Park. My inventory and Be CORAgeous wear will be there from 10-4. I will be there for some part of the day. This is an amazingly fun kids festival and not terribly expensive. I hear the weather is going to be perfect. Hope to see you there!
Be CORAgeous!

Bubbles!

As soon as Andrew walked in the door, he jumped on me (yes, right into my arms)  "Did it work, did it work?"  Me - "Did what work?"  Him - "The bone marrow, the bone marrow, Mommy the bone marrow, did it work?" 

He has been so stoic this whole time.  I had no idea he was so worried about his sister.  I had to explain to him that we will have a baseline number in about a week.  My birthday is Friday and I said a little prayer that there would be happy birthday news when we go to clinic on Fri.  I know it is too early but it doesn't hurt to wish.  Today, I am also grateful that I have another year until my next milestone.  I am pretty sure that turning 40 while going through all this would be the straw that broke the camels back. 

Cora spent the afternoon blowing bubbles with Mommom.  She pushed her dolly around outside and enjoyed the beautiful weather, while sporting her "mouse" mask.

I took Grace to the mall for some fall clothes.  Seriously, I have no idea how my mother got through the clothing years and shopping with me.  When I got to the mall, suddenly I was the most tired I have ever been and couldn't wait to get out of there.  My sweet daughter had to look at every single piece of clothing in her favorite store.  I vowed to work on my mall attitude, but not until next month.  We did come home with one (just one after an hour!  Do you have any idea how much shopping I can get done in an hour!) outfit that we could agree on.  Next month we will shop for a winter coat and I will have a better attitude. 
I will update you on the bone marrow baseline as soon as we get the test results.  Please pray that Cora's body continues to fight this digestive bacteria. 

I know I shouldn't share this but here is some writing I found of Grace's.  The list is called "Things about Cora".  The last item reads "She is home, happy and herself again.  And now the family is back together and we are happy."

I thought I was tired...

I thought I was tired before but WOW!  This brings a whole new meaning to tired.  I lay in bed and wait and wait and wait some more - no sleep.  You see, in the apartment there were some people that lived upstairs.  They kept me awake night after night.  I guess my body thinks we should be awake.  Maybe the change to cool weather, my amazing duvet cover and exhaustion will make a difference tonight. 
Cora is so happy to be at home.  While it is really tough to occupy her, the big kids are being so good with her.  She won't let anyone, not Jeff, Grace, Andrew, even poor Jersey, out of her sight.  When someone leaves the room, we are met with a "MOMMY!" which sounds like it comes out of bullhorn.  She will adjust - right?? 

Today was a much shorter clinic visit, which I am so grateful for.  Going to clinic evokes the same exhaustion as a day at Disney World.  Cora's counts are still up and she appears to be making platelets on her own.  One day I will remember to get her numbers so I can tell you what they are.  Her platelets are nearing the "normal" range.  We took her off the GCSF, one of the meds used to boost neutrophil (ANC) counts.  The last time we did that, she tanked and had to go back on.  This week we did it again and she is holding her own.  Yeah!  One more success. 

Couple mini fundraisers that I would love to mention or offer shameless self promotion - you decide which it is.

This weekend SPRFC, the gym that I have been a member of for 20 years will have Be CORAgeous bracelets and t-shirts for sale during all group fitness classes. I hope to make it to my usual Saturday morning group power class. 

Sunday, I will be selling at Oktober Fest in West Annapolis.  That is an amazing german festival.  I will spend the day selling hairbows and eating 'kraut!  The festival runs from 10-5.  To get to the festival, take any left turn off Bestgate Rd, before you hit down town Annapolis.  I will also have Be CORAgeous gear with me at the festival. 

Be CORAgeous!

I saw the sign!

I don't need to be hit over the head or struck by lightening but I "heard' the sign.  I get it and we are moving home.  I don't know when we will move since we are taking things slowly.  Later this week sits well with me - how about you?  I heard there is going to be a party in our driveway (with everyone wearing germ masks!)  Sorry - I know you are wondering but I don't want to share the sign in my journal.  For all I know, your sister might be the nurse that unknowingly gave me the sign.  Call me and I will gladly share the story. 

Grace and Andrew are really worried that Cora will get sick again, not just with a cold but like she was when she was admitted into the hospital in July.  We will pray that her body stays strong and fights infections. 

One of our doctors outlined Cora's immune system status in terms everyone can understand, even Grace and Andrew.  In 6 months, Cora will have 1/2 of an immune system.  It will take a year or more for it to be back to full strength.  Right now she has the immune system of a baby born at 20 weeks.  Wow, that really brings it home.  

On a happy note, Cora's counts continue to climb.  She didn't need any platelets or blood today.  Sometime in the next two weeks we will have a repeat bone marrow aspiration and that will be the first real glimpse into Cora's recovery.    We will know if her body has accepted Andrew's marrow as her own or is fighting it.  This will be a time of prayer.  I will let you know the date as soon as I know. 

Be CORAgeous! 

Prayers for Direction

So, today I am asking for something for me.  I need direction and clarity for our next step.  The move to transition went really well.  Cora doesn't really need to be in the transition house.  It has been suggested that we go home and  I am considering this for a variety of reasons.  Putting aside Cora's health, it is much harder than I thought it would be to run two houses. It is hard being Cora's sole caregiver with no other adults to interact with.  Money is also a constant concern.   Naturally, Jeff and the kids want us to come home.   

I looked to our nurse today for some direction.  She told me we were free to go home and there isn't really any reason we shouldn't go home, other than me being overwhelmed with running the house and taking care of Cora.   You might remember that we technically didn't qualify for the housing (because we live so close) but there was an open apartment so we got it.  Cora is doing well and staying infection free.  If we go home, we will have the house on germ lockdown!  I have also come to realize our home is more mold free, germ free, clean air, etc than the transition house. 

I am a firm believer that something will happen to make it clear which decision is the right one.  So, I am hoping my dear followers will help me find clarity and direction.  Please pray for direction for our family. 

20 Months Today!

Happy 20 month birthday, Cora!  The 21rst of the month comes again with a little anxiety.  We were admitted to Hopkins on July 21 and again on August 21.  Today we are 8 weeks, (yes, only 8 weeks) into our journey.  Admittedly, I was worried about our clinic appointment today.  I fear infection, which I know will come.  I fear GVHD (graft rejection) which we hope won't come.  I fear the 21rst of the month because that has not been a good day for us the past two months. 

Today was a good day and I will not fear the 21st again!  Yesterday, our nurse told me to prepare for a long appointment as Cora would be needing platelets today.  Everyone was shocked to see that her platelet count went up on its own - for the first time in 8 weeks!  So did her white blood cells, red blood cells, and those famous ANC's.  I am so tired and overwhelmed that I said "thank you" and ran out of the clinic.  On the way home, I realized I had no idea what this potentially could mean.  I called our pal Dr. Burke, who explained that this is another sign that the bone marrow is grafting.  Yeah! 

Keep your prayers coming that Cora's body stays strong and fights off infection.  I believe prayers are being answered so keep up the good work. 

Grace and Andrew are here tonight to celebrate our release from the hospital.  We will have the cake from the hospital.  The cutest thing ever is to see Cora so excited when Grace and Andrew arrive.  Her feet jump up and down in a happy dance, screaming "Ace!  An"

Are you happy?

Once Cora realized what was happening today, there was no stopping her.  She knew something special was happening because her door was decorated for the celebration.  At first, she screamed and cried as we made trip after trip to the car.  Then, her room for the last 31 days was empty.  When they brought out her cake, I think she got it!  We sang "Happy end of transplant to you!" and off we went.  I could feel the electricity in Cora's body as I carried her thought the heavy door we came in through 31 days ago.  "Bye-bye's, this (pointing in any direction but the way we came), bye-bye's"  Our departure took a few extra minutes because of a medication mix-up but Cora's electricity grew as we headed down the elevator and to the doors.  

Once in the apartment, she was a little scared and confused.  I have been saying we would go to a new house for a little while, but it is hard to know what she understands.  As Jeff was cleaning out the car, Cora settled in on my lap for a snuggle.  She let out a huge sigh of contentment.  I said "Are you happy?"  "Uhhhuuhhh!", was her reply.  That about sums up the day!

Preparing to leave

Preparing to leave our cozy hospital room is quite overwhelming.  Beyond all the things we need to bring from our house, we have to prepare the kids.  We haven't told Grace and Andrew yet because I feel like there is an infection looming.  I know my girl and she isn't right.  There is nothing to go on yet so we will just wait and see.  The doctors told me today that an infection will happen at some point.  Cora is doing better than 95% of bone marrow transplant patient so we should just celebrate today.  If I am right though, our departure will be delayed 7-10 days. 

I have been thinking that perhaps Cora is feeling so good that she has realized this isn't our life.  Yesterday, her pal went home.  Try explaining that to a 19 month old.  Her door was decorated, thus is the custom when you have a success on the 8th floor.  Cora loved playing with the decorations.  Later in the evening, they started tearing the room down for cleaning.  When we were out for our evening stroll, Cora noticed.  "Ma, Maky?  Night nights no?"  I said "She is all gone.  She went home."  Every time we walked by her pals room, Cora said "Maky house"  I have to wonder, does Cora know we have another house?  Does she remember her bedroom?  Or maybe she just feels empty because something is missing but she doesn't know what. 

I started today telling Cora we are going home to another house, very soon.  I can see she is trying to understand what I am saying.  I should have taken pictures. 

I just have to share this story about my sweet Grace.  We were loaned an amazing book about a young girl with Aplastic Anemia.  It is actual photos of her journey.  Grace and Andrew had me read it to them over and over.  They recognized the walls here at Hopkins and all the things that are the same as Cora's journey. I know they took so much comfort in learning about another family that is like us.  Grace asked to take the book to school and shared the book with her class.  The next day, she asked to take her stuffed duck with the central line so she could share how we care for Cora's central line.  She captured the hearts of her classmates and teacher with her story.  She even went so far as to share Cora's facebook page, which she memorized reading over my shoulder, saying to her friends "My Mommy needs your help"  (note to self, third graders can read anything!!)  This is the first time that Grace has opened up about what is going on with Cora and I am thrilled.  Tonight, Grace asked if Cora was ready to go into transition housing.  HOW did she know that, I asked Jeff?  I now suspect Grace knows more than we realize.  Remember, we have never told the children that Andrew's bone marrow was life saving for Cora. 

Prayer requests for Cora - pray that I am wrong and there is no infection in the future.  I suppose you could pray that if there is going to be an infection, get it over with while we are still in the hospital!  Pray her counts continue to climb since they were down slightly today, which is normal.  Pray that Grace and Andrew continue to find routine and peace in our upside down life.

I most likely won't post tomorrow or Sunday.  We will have Jeff's family here to celebrate Andew's birthday aboard The Fearless, an urban pirate adventure on the waters of the Inner Harbor for true pirates!  Thank you Cara for making Andrew's birthday special. 

Be CORAgeous!

Captain CORAgeous wins again!

On this, the 6th birthday of Captain CORAgeous, we were given an amazing gift of hope.  At exactly 12:10 (I was watching the clock, read below to see why) Cora's doctors came to do rounds.  Cora was just falling asleep so they asked to see me in the hall.  I was totally annoyed because Andrew was born at 12:10.  I planned to spend 12:10 reflecting on my brave son and his first 6 years. 

I could never have been prepared for what they would tell me.  One of the markers of bone marrow success is a rise in Cora's neutrophils, showing that Andrew's bone marrow is doing its job.  The doctor started the conversation by talking about how great Cora has been doing, how the effects of chemo have been minimal, and how happy they are with her progress.  I can hardly believe my ears when he says, "so, we need to talk about working you out of here.  Have you thought about where you will go after here - home or transition housing?"  Uumm, excuse me, do you have the wrong patient?  Apparently, Cora's neutrophils have already started going up.  Yesterday, they were 102 and today they are 420.  This indicates Andrew's bone marrow is doing its job! 

All this on the same day and at the same time that we were blessed with Captain CORAgous!  It gets better though - my lunch was delivered as I was talking to the doctors.  I took the tray from sweet Eunice and thought, what is that smell?  Whatever, I was lucky to be holding the tray without dropping it at that moment.  When I came into our room and sat down to eat lunch and share our news with you, my turkey sandwich wasn't turkey.  It was TUNA FISH!  (Oh, I just heard my sister, Connie and Lee Ellen gasp)  Tuna fish, which I hate, is a symbol of my grandmothers legacy.  Tuna fish was wrongly delivered to my room, at the exact moment of Andrew' birth and Cora's rebirth.  I ate the tuna fish, without complaining, just for Mommom. 

So, today we will celebrate Andrew and a glimmer of hope for Cora.  Her risk of life threatening infection is still very, very high.  We haven't even started to talk about GVHD (rejection of the bone marrow) but we know that the bone marrow has started to do its job.  We have a long rollercoaster ahead but we have climbed the first hill. 

Don't tell me no!

I am sure all our supporters will get a kick out of this story.  Yes, I am still the Heather you know and love, even though my daughter is sick.  Some days I don't know if I ate or took a shower.  Then, someone wrongs my kid and the old me kicks in!  I contacted all the organizations that I was told we don't qualify for - beads of courage, super sibs, summer camps and make a wish.  Guess what - our social worker was wrong! wrong! wrong!  (I secretly hope she is reading our blog and knows how wrong she was.)  I have applied for Super Sibs and ordered more beads of courage.  We don't qualify for Make a Wish because of Cora's age but that is okay.  I know she would ask for "Mouse" and I am not up for that trip anytime soon.  It just goes to show, you should never take NO for an answer. 

So many of you offered to send Grace and Andrew cards and notes. I would still love if you did that because Super Sibs is once a month.  My kids love getting mail!  Grandma and Poppop can attest to that. 

Please use our post office box -
Cora Dalik Fund
c/o Grace or Andrew Dalik
po box 333
Linthicum, MD  21090

Cora had a great day yesterday and is sort of fussy today.  Nothing makes her happy but I am getting through the day.  Tonight Jeff and I will switch so I can go to back to school night.  I can't wait to see Grace and Andrew's classrooms and hear about what they do during the day.  Tomorrow Jeff, Grace, Andrew and I will be at our house together for the first time in almost a month.  Captain CORAgeous will celebrate his 6th Birthday!

Cruise with us!

I’ve gotten a lot of questions about why we are attempting to raise so much money. “Don’t you have health insurance?” I wanted to take a minute to explain the situation and yes, ask for your support one last time. As you may know, Jeff and I are small business owners. This means that, while we do have health insurance, it doesn’t have all the “bells and whistles” that a typical, corporate or county insurance has (sort of makes me wish I was still teaching!).  Getting affordable coverage is, quite frankly, one of the only downfalls of being a small business owner.  After adding up the facts with our case worker, we can expect $30,000 - $50,000 out of pocket costs. This will not include the transitional housing that we may have to go to which is not covered by insurance at all!    When you couple that with the fact that I am no longer able to work, and the fact that we have had to close the bike shop additional days so that I can see the big kids, it really becomes an overwhelming financial situation. 

Our yard sale was successful. Our bracelets flew off the shelves. We have had numerous generous donations. But we wanted to have one big event. An event that could raise a significant amount of money, be a fun night out with all our friends, and bring everyone together to celebrate the miracles that have transpired with Cora’s treatment. 

I had a friend of a friend contact me and offer to put together this event because she knew how to do it and felt compelled to help. She is one more angel in my growing list of godsends. I am very grateful to her because we certainly didn’t have the resources nor the connections to pull off such a great event.

The event is the Cruise for Cora.  A sunset cruise around the inner harbor, it will be really lovely. We will have a silent auction. We need help gathering silent auction items too – you can contact Kristin Mowry at 410-804-5171 if you have something to donate or want to join Team Cora in soliciting donations.  You can also post inquiries on Cora's facebook page and someone will get back to you.   

We are selling electronic tickets (we did this to cut down on the cost and time of printing physical tickets). Tickets can be purchased at: http://becorageous.blogspot.com/p/upcoming-events.html. I am very excited for this cruise and I hope you all will be too. Oh, and not to worry, we promise to have another event centered around Cora's biggest supporters - the kids. 

I also wanted to let you know that Cora had another wonderful day with Daddy.  She was more tired today than yesterday and look a few naps, which is so unusual.  We are slowly seeing the effects of chemo creep in.  Jeff says her hair is falling out fast but she isn't bald yet. I am holding out hope that she keeps doing well so keep praying! 

Be CORAgeous!

Hair today and gone tomorrow

You guessed it - Cora's hair is falling out.  Last night I thought she looked a little thin on one side of her head.  I examined her crib, found no hair and decided I must be making it up.  We were out for our evening stroll around the floor.  Cora was relaxing in her little tykes riding car, feet up, fingering her curls.  All of the sudden, she has a handful of hair in her hand.  "MMAAA, hair!"  Needless to say, it would have been priceless if it hadn't been so emotional.  The look on her face when she had that handful of hair in her hand, was hysterical but I promptly started crying.  I took the hair from her, did the Mommy "dust off", and started talking about the wall decorations.  Cora forgot.  I cried. 

The nurses here are wonderful.  One of them noticed me crying and without talking, took the hair from my outstretched hand.  She said, I will meet you in your room.  Together, (and without talking) we tied off the remaining curls and cut them off.  Grace will be thrilled to hear Cora has a wedge haircut just like her big sister.  I have Cora's curls and they will go in her baby book as her first haircut.  Very emotional!

Cora has been really fussy today. I can tell the effects of chemo are kicking in. She wants to eat but has sores in her mouth.  She is tired but not tired enough to sleep. She wants to be held but she wants to be left alone. 

Please pray that the effects on Cora's body are minimal.  We also need to add to our daily prayer, thoughts to keep the infections away.  Her blood counts will be dropping, putting her at the highest risk of infection.  As we start to track her counts, I will let you know.  Counts are taken every day and will go up and then down.  When they stabilize in 3-4 weeks, we know we are almost there. 

Enjoy the sunshine this weekend.  I can't wait to get outside with the big kids. 

Be CORAgeous!

Today I will eat...

COOKIES!   I am finally hungry and today, tomorrow and the next day I will eat homemade cookies.  Luckily, I have an amazing baker friend who brought over homemade cookies, within hours of me mentioning I was craving them.  All the food here at the hospital is so processed, so bland, so cold.  So for the next few days, I will eat cookies.  Cookies and peanutbutter, cookies and cheese, cookies and carrot sticks.  Today I am grateful for cookies!

Cora had another uneventful night and day so far.  Today is day 7, post bone marrow.  We should see her being to feel bad right around now.  Again, we will wait and pray the effects are minimal. 

Someone suggested I check into Super Sibs, a program for the siblings of sick children.  I asked about it today and it sounded so wonderful.  Siblings are sent care packages with notes and cards.  I know how much my kids love getting mail so this sounds like something they would love.  I excitedly filled out my application and turned it right in to our social worker.  BAM!  (literally heard the door slam) "oops, Cora doesn't have cancer.  Grace and Andrew won't be approved."  Really??  As if to say, just because Cora has another, very rare, life threatening illness, our journey isn't valid.  (Trust me, I just figured out where my energies are going to go when this is all over.  I am going to change the system!) 

So, I got to thinking, why couldn't our "village" create our own Super Sibs program.  Trying to keep it simple, our supporters could mail Grace and Andrew notes of encouragement, cards, pictures drawn by your kids.  We could use our post office box, which gets checked each day.  I am open to thoughts and suggestions so share what you are thinking as I put this together. 

Be CORAgeous!

Prayers are being answered

Every day I think that this will be the day when Cora starts feeling bad.  Today wasn't that day either.  Today she was fussy times (which sent our favorite doctor running for cover!) but nothing like what has been described to me.  Could we be THAT lucky?  I doubt it so keep praying that the effects of chemo and the bone marrow transplant are minimal. 

We had another quiet, rainy day.  The view of the city from the 8th floor is amazing, even in the rain.  Cora loves to look out the window and says "rain".  I wondered today if she is missing going outside.  She doesn't ask to throw the ball with the "woof" anymore so I guess she is getting used to the indoor life.  You know what else I noticed today - there are no bugs on the Oncology floor.  Not even on little stink bug or gnat.  I guess bugs weren't invited to this party.   

Cora is also starting to talk more and tell me what she needs.  Her voice is so cute when she says "peas Mommy" and "tank you".  It melts your heart!  I would love to get rid of the word "Elmo", her new favorite guy.  We spend many hours a day snuggled up, watching the furry guy. 

Thank you again to everyone who is praying for Cora.  Our message is reaching far and wide.  Tonight, could you also pray for all the children and families we spend our days with.  I am learning that everyone has a story.  Although the stories are different, the emotion is the same. 

Andrew is amazing!

Captain CORAgeous, saving the world one sister at a time!  What an amazing boy he is.  He was able to go back to school today and made it through the whole day!  I told him someone would come get him around 1:00 because I honestly didn't think he would make it through the day.  This morning he said to Jeff "Can I stay all day if I want?  Isn't that what the other kids do?"  We relied on his teacher to let us know if he needed to come home.  He had a great day and we are thrilled.  Remember, his doctor told me he would miss most of this week. 

Cora had another uneventful day.  In the next day or so, she will start to feel bad, her hair will fall out and she will stop eating.  I am cherishing the happy days.  Right now she is in her crib singing the songs we sang today and clapping happily.  Today we counted to five and spelled her name, all the things a normal toddler would do on a rainy Monday.  If I peel the back off one more foam sticker, I might go nuts though.  But wait until you see her art!  She also got to take her first real bath in about a week.  She was off her iv pole for an hour this morning, which made her really happy.  

Thank you to everyone for your support, love and prayers.  Someone commented in the guest book that so many people are praying for us - people we haven't even met.  I hope one day we get to meet all the people who have prayed, wished, sent positive energy and kept our village together.

Another Quiet Day

Another quiet day - almost has me worried about what is coming.  Cora was pretty happy today and after a morning on the couch, Andrew returned to the boy we know and love.  I was even able to take the kids over to Rachel's (our beloved babysitter) to celebrate her 21rst birthday.  Happy Birthday Rachel!  After that friends came over to get my laptop all set up for scrapbooking.  It was really nice to see Grace and Andrew playing with other children, happy, almost normal. 

Just like greiving the loss of a loved one, there is an emotional process for what we are going through.  Today, I cleaned out the garage (which is better than therapy!) and while I cleaned, I started to reflect on the events of the last 6 weeks.  There are parts I don't remember.  I don't remember calling Cora's Godmother or my mother.  I don't remember all the details, the blood counts and medicines of the first 8 days.  I don't remember hearing the diagnosis from the doctors.  I don't even remember who the doctor was that told me the diagnosis.  I am starting to put the pieces together so don't be suprised if I ask you a crazy question that I should know the answer to. 

All this reflection brought me to realize that I need to say thank you to a lot of people.  I think the biggest thank you needs to go to my Mom and Howard who have been at my disposal 24 hours a day, 7 days a week.  To all the people keeping our bellies full - thank you.  Everyone helping me with odd jobs so that I can spend time with the kids - thank you.  Thank you to my sister, Suzanne and James who have taken on fundraising as a full-time job.  That brings me to my last thank you for tonight.  Thank you to everyone who has donated money to help pay Cora's medical expenses.  Jeff and I haven't really gotten our heads around the tremendous expense in front of us, but many of you have.  We are extremely grateful for every penny you have donated.   Oh - and thank you to Simone, Cliff and all our bike shop employees.  Without you, Jeff and I wouldn't be able to be in two places at once. 

Be CORAgeous!