"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!