"I don't like...."

Friday, January 6, 2012 9:08 PM, EST

written by Heather Dalik

"I don't like..."

Sorry for the delayed update.  For whatever reason, I have been unable to get on Caring Bridge the last two nights.  Our clinic visit on Wed was uneventful.  Cora's blood counts all look great.  As Nancy put it "Now we just keep her infection free and come in for weekly visits".  We have been reduced to once a week, which is amazing.  Having the big kids at school four days this week, left me with three free days.  Wow!  Cora and I have been reorganizing the house, cleaning out the toys and playing playdough. 

Cora is turning into a typical two year old.  Yesterday, she asked to dress herself.  We practiced and practiced the steps to putting on pants and a shirt.  At bathtime, Cora went right to her closet and got out the clothes we used to practice.  She called everyone into her room to watch her new talent and boy, was she pleased with herself when she got her pants on.  I do hear phrases like "I don't like..." and "I do it" and "Me too", all typical toddler phrases.  I had to pull out an old mommy favorite phrase this week too "Are you doing to do it yourself or am I doing to do it for you?"  My friend Lynn handed that phrase down to me phrase 8 years ago.  It has seen a lot of use.  I also had to use "No, that is a Mommy job".  Cora does not like to be told no. 

Cora also has started running, a huge developmental milestone that was delayed by the chemo.  Grace and Andrew created a running game where Cora runs through the kitchen and everyone claps when she gets to the other side. I often wonder what it is like to be the center of attention, as everyone in this house drops whatever they are doing when Cora calls for us. 

Cora is now 4 months post transplant, just over 120 days.  Cora and I have another 4 months of "house arrest" as I have come to call it (thanks Cassie).  I realized that we are 1/2 way there.  I hardly remember the first four months and I am confident I can get through another 4 months.  The winter months are hard on everyone but if we keep having these spring days, we will make it through just fine. 

Since we are reducing our clinic days to once a week, my updates will most likely become more infrequent.  Not to worry - no news is good news.  I promise to update after each clinic visit.  Of course, when there is a cute story to share, I will update. 

Lots of exciting things coming up.  On Jan 21, Cora will turn 2.  That is also the 6 month anniversary of our journey.  In honor of her birthday, I am working on putting together a bone marrow donor drive.  I will share more details about that when I have them. 

Please continue to pray for Cora and her new friends.  We have two special friends that need prayers for health and healing. 

Be CORAgeous!

Be CORAgeous in 2012!

Sunday, January 1, 2012 5:51 PM, EST

written by Heather Dalik

Be CORAgeous in 2012

We decorated the house the week after Thanksgiving with the hope that we would be together as a family and the fear that we wouldn't.  We made it through Christmas and it feels good that there are no goals in the future. 

Yesterday, I had that feeling.  You know the feeling.  The time has come to put Christmas away.  The plan was to put away the decorations today but after I put Cora down for a nap yesterday, I just couldn't follow the plan.  Jeff walked in after a full day of work to find most of the decorations put away, leaving the big tree - which he has to help with.  Jeff knows a driven woman when he sees one and he also knows not to interfere.  We got it all put away just in time for our annual New Years Eve showing of The Polar Express.  I am not much of a movie watcher, especially a movie I have seen many times.  When I complained about having to sit and watch the movie, Jeff suggested I watch Cora watch the movie.  Cora really enjoyed the movie, laughing at all the right times.  She was adorable to watch as her eyes widened when Santa appeared and held on to me as the train went downhill.  Jeff was right and now I have a New Years Eve memory from 2011. 

Today, we celebrated Uncle James' birthday.  In 2012, Jeff, James and I will all celebrate birthday's that end with a "0".  Originally we talked about a "no kids" celebration, but our focus has changed.  Today, I wondered how we will celebrate.  Which brings to me my resolution for 2012.  As I cleaned and organized the house today I thought about what my resolution should be.  Lots of people say they will spend more time with their kids.  My resolution is going to be to spend less time with Cora, relying on others to care for her.  Those that have seen me at the gym, know I am working my way out.  An hour here, an hour there.  My goal for 2012 is to leave her for 8 hours and not call home, not even once.

Thank you to all of our supporters who got us through the second 1/2 of 2011.  Here's to an amazing 2012!

Be CORAgeous in 2012.

What a great week!

Thursday, December 29, 2011 6:38 PM, EST

written by Heather Dalik

What a great week!

We have had such a fantastic week.  I don't even know where to start.  So, admittedly it is a lot having all three kids at home, not being able to go outside (too cold and windy), holiday happenings to take care of, kids want attention, and so on.  Not being able to leave the house during normal waking hours has to be the hardest part of this journey.  During the day, the kids and I baked cookies, did crafts, wrapped gifts and made special handmade gifts for each other.  At night, I ran around getting all the last minute things and groceries.  Somehow, it all got done but on a much smaller scale than previous years.  It is amazing how the inability to do what you usually do, changes what you do.  I didn't have the usual holiday stress of 100's of things to do, because we can't go here and there.  There was no pressure or guilt from friends to attend this event or that party. 

Christmas morning was amazing.  Cora quickly adapted to opening presents and learned the phrase "for me?".  Some of her cutest phrases are "Wooooww", "fresents (presents)", "hoho coming" and the famous "I see a neigh".  The kids enjoyed every last present to the fullest.  We had breakfast and more presents at my Mom and Howard's house, a life long tradition.  PopPop's "doughgies" (fried dough yummyness that I am pretty sure Howard and Leory invented)  are a huge hit with Cora.  Cora's dolly was her favorite gift, after a set of horses. 

The days following Christmas have been filled with playing, playing, playing!  One morning I snuck out with the kids just before 10:00 to show Cora the trains at Marley Station.  Our visit only lasted about 10 minutes (because people started coming in) but at least Cora got to see the trains.  Grandma and Poppop are here from New Jersey, which gives me a chance to get a few odds and ends done.  Grandma and Poppop do a good job of keeping up with the energy in our house.  I am pretty sure Andrew hasn't stopped talking for the last two days. 

Cora's clinic visit yesterday was uneventful.  We had to go back for a blood draw this morning but I haven't heard about the results.  In this case, no news is good news.  Cora gave Nancy (our PA) a lion ornament.  Cora knew the ornament was for Nancy.  As soon as we saw Nancy, Cora went into my bag.  "This", she said.  She took the present and gave it to Nancy with the sweetest "fresent for Nancy".  I am pretty sure that phrase was a present enough.  Hearing a toddler say your name for the first time is the sweetest and not something you forget.  Nancy has been our rock since we got out of the hospital and started clinic visits.  She has seen Cora and I laugh, cry, scream, and worry.  She keeps me sane (sort of, anyway).  There will always be a special place in our hearts for Nancy. 

No special prayer requests tonight.  I am slowly getting my voice back and it seems the virus has left our house.  How about a prayer for snow???

Be CORAgeous!

Merry Christmas!

Saturday, December 24, 2011 10:10 PM, EST

written by Heather Dalik

Merry Christmas!

So sorry to all of you who will see this late update and get a knot in your stomach.  Not to worry, all is well.  As of 10:11 pm, all three children are nestled in their beds.  The reindeer food is out on the lawn, cookies and carrots are out for Santa.  The presents are under the tree, waiting for three excited children. 

Cora has a runny nose and cough so please say one last prayer that we get through the night without a fever. 

Thank you again to the Secret Santa's who helped us totally spoil the children.  The kids have been so brave and courageous this year.  I feel like the deserve anything they want, and more.  And that little Cora is in for a real treat tomorrow morning.  I can hardly wait to see her reaction.

Be CORAgeous!

Facts!

Friday, December 23, 2011 10:47 AM, EST

written by Heather Dalik

Facts!

Fact - cleaning up vomit at 1:00 in the morning does not give you character.

Fact - one or more children will be sick on Christmas day.

Fact - I am done with all this sickness.

Fact - Cora isn't sick and it looks like I will see my babies under the Christmas tree on Sunday. 

I was awakened at 1:00 in the morning to a sound I couldn't place.  It sounded like water hitting the floor.  I bolted out of bed (as fast as I could given that I have hurt my back carrying Cora).  My first thought was a pipe burst, second thought was - no way.  There was my sweet Grace in the hallway, all the contents of her stomach on the floor.  Grace seems fine today but a little sluggish.  This confirms that Cora's illness on Friday was not part of the reaction but a fast moving stomach bug. 

Andrew is still coughing but getting better.  I still have no voice.  The kids are peaceful and calm today.  We just have to get through the next two days without incident and our family will be together on Sunday.  Cora's counts were great yesterday at clinic.  All kids at clinic are given presents for the holiday.  Cora noticed the pillow pets first.  "Oh, dolphin".  If you know anything about my older two, you know they are in love with dolphins.  "Ace?", she asked.
"Do you want one for Ace and An?" 
"Yes" 
Of course we brought home three dolphin pillow pets.  Cora gave them to "Ace" and "An" last night with a kiss.  They were thrilled.  As I write the dolphins are lined up on the sofa ready to watch a movie. 

Thank you to all the cancer Moms who said "I feel that same way about stores collecting donations".  I am so glad I am not the only one.  When I start my campaign to change the world, I will work on eliminating that trend. 

Please continue to pray for the health of our entire house. 

Be CORAgeous!

So REAL!

Wednesday, December 21, 2011 12:28 PM, EST

written by Heather Dalik

So REAL!

Gail posted in our guest book, "oh, Heather you are so real".  If you knew me before Cora got sick, I have always been a real person.  Ask me how I am doing and I will tell you.  Make me mad and you will know.  I have never had time for fluff and stuff.  I emailed a mom supporter after an outing I had last week.  I hoped to make her laugh with my rendition of what happened.  She asked to post it on her daughters Caring Bridge site.  I forgot about it and a few days later, I was reading her post, laughing and realized, it was my story.  I thought I would share a real story with you so you can feel what my new life is like.  This is pasted from Gretchen's journal.

A friend of mine, Heather, has a little girl with aplastic anemia. She had a bone marrow transplant 100 days ago (yeah Cora!!!) and so far, is responding well. Heather emailed me the other day with the following, which perfectly sums up exactly the mind-set of cancer moms (she gave me permission to post this, by the way):

“So, there I am minding my own business at Ann Taylor Loft.  I went in to get a sweater because I am cold.  I found a t-shirt, no sweater.  In line, I realize there is a fundraiser for St. Jude.  The girl on the poster has no hair but eyebrows and eyelashes - clearly not the sickest of the sick.  I am put out by this.  Show a real sick kid for gods sake.  Better yet, show her haggard parents.  Anyway, everytime someone donates, the happy employees ring a bell and whoop.  Lovely!  Deciding whether to throw the shirt on the ground or not and walk out.  But heck, it was a good deal (only $10) and it is cute.  So, I stay in line.  "Would you like to donate to St. Jude?"  Me- "No thank you"  Sales girl - "Wouldn't you like to help sick kids?"  

Seriously?  You asked for it!  "My daughter is one of those sick kids you are raising money for"  Silence.  Happy music stops.  Cashiers are suddenly unable to make eye contact.  Another customer gasps.  I turned on my heels and walked out with my cute, cheap shirt.  

By the time I got to the Lancome counter to get my mascara, I am a blubbering fool.  That poor girl had no idea what to do with me so she acted like she didn't see the tears streaming down my face, got me my mascara and ran away from me as fast as she could.  

Not sure if I will write this for Caring Bridge but I am sure it was funny to an onlooker.  I am starting to think I shouldn't leave the house unattended.”

THIS is the life of a cancer mom (I include Heather as a cancer mom even though Cora does not have cancer – she gets chemo for goodness sake so that is enough for me). We are crazy. Certifiably insane. But, truth be told, I feel the same way at Safeway every time the cashier asks me about donating for cancer research. I just want to burst into tears because Alyssa is one of those kids on the poster. And I don’t want her to be the kid on the poster. But she is. And that is our reality. So, nice lady at Safeway who ALWAYS, ALWAYS gets my name wrong even though I am there three or four times a week, if I am crying, it is because my baby is the child on the poster. And I just want to get her food and leave without you REMINDING me that she has cancer, and that there is a need for research because we aren’t able to save everyone yet.

This is my new "real" life.  And yes, I know Christmas is right around the corner so I hope this story made you laugh and not feel sad. 

Speaking of Christmas, if you have been part of the magic of Christmas happening at our house, thank you so very much.  I don't know who you are but you do.  Our kids are going to be speechless on Sunday. 

Cora will go to clinic tomorrow for counts.  I would like to report she is healthy but I am afraid to say that out loud.  The fear of a Christmas hospitalization is so real expecially since  Andrew is on antibiotic.  When I was working, I used to loose my voice and cough a dry cough when under extreme stress.  I have that going on right now.  Keep your fingers crossed that this isn't an illness but my body's way of fighting back. 

Please continue to pray for Cora's wellness and great counts on Thursday!

Be CORAgeous!

Ps - Cora is supposed to be napping.  On the monitor I hear "Oh toodles?"  Sooooo cute!

Terrible!

Sunday, December 18, 2011 1:37 PM, EST

written by Heather Dalik

Yesterday was a terrible day here at the Dalik house.  One where Jeff walks in the door at the end of his work day and says "Wow!  Looks like it was a tough day." and removed the screaming child that was stuck to me with invisible velcro.  What gets into kids this time of year?  Isn't this when they are supposed to be behaving, helpful, loving little angels?  Cora spent most of the day either cry to be held or being held.  Cora's crying stressed Andrew out, which made him over react to Grace's mere presence.  This created some weird dynamic of fighting all day!  I tried "Santa's watching", I tried time out, I tried distraction, I tried more distraction.  But the day went on - Cora crying, Grace and Andrew fighting.  I should note that Grace and Andrew rarely fight so when they do, I have no tolerance for it.  Bed time was early!

Today, I feel like I have been hit by a truck.  I even took a nap.  (sort of anyway - Grace felt compelled to come in and tell me someone was at the door, just as I fell asleep)  I dumped Cora on Jeff today, having him keep her downstairs when I was upstairs.  As soon as Cora sees me, "Mommy hold you".  Luckily, Grace and Andrew are getting along today and playing with our elf, Pizzel. 

Cora has something brewing.  I can just tell.  Friday, just as we were ready to leave for Grace's show choir finale, Cora vomited several times.  I talked to Nancy, our PA, and she said to wait and watch.  Promising Grace I wouldn't miss her show, we left Cora with Rachel as planned.  I figured a fever was coming so when I got home, I packed my hospital bag and got things in order (again).  It seems like if I do that, nothing happens.  So, from today until the middle of next week, I will leave the bag packed.  I might even put it in the car.  Maybe that will protect us from a Christmas week hospitalization. 

Yesterday, Cora had a little bit of a green nose but nothing today.  This lack of immune system is so weird.  Usually, when kids are getting sick, there is a predictable path.  This doesn't seem to be the case with Cora.  One day a cough, then nothing, then runny nose, then nothing.  It just creates worry because I don't know what is coming.  Grace and Andrew are both on the brink of either getting better or worse.  We have to wait and see on them too. 

Can I just mention how proud I am of Grace?  She wanted to do "Show Choir".  I have no experience with it but it is a theater production.  She likes music, but dancing?  She dropped out of ballet and tap years ago.  We let her do it and my Mom has been picking her up from school twice a week since September.  She refused to practice at home so I really had no idea what to expect.  Oh My Gosh - I spent the entire 30 minute show wondering who this girl was.  She sang, danced and performed like she was made for the stage.  When did my shy, quiet daughter turn into a performer?  I guess it happened in the last four months but I was too busy taking care of Cora to notice.  I am already looking forward to the spring production. 

Don't forget about our Be CORAgeous ornaments.  Pam (the artist) just let me know she has a few left.  Here is the link!
http://www.etsy.com/listing/87733225/be-corageous-lion-ornament-fundraiser?ref=sr_gallery_2&ga_search_submit=&ga_search_query=cora+ornament&ga_view_type=gallery&ga_ship_to=US&ga_search_type=handmade&ga_facet=handmade

Be CORAgeous!

Today

Thursday, December 15, 2011 8:28 PM, EST

written by Heather Dalik

Today

Today was not quite the uneventful, but long day I planned.  We started the infusion about 10:30.  It is administered very slowly to monitor for reactions.  Benedryl and Tylenol are given preventatively.  Cora was happy watching Elmo, mellowed out by the pre-meds.  There was a little trouble with air in the lines and our nurses worked on fixing that.  Following that, the dose was raised for the next infusion.  At around 12:30, Cora had a severe reaction.  She started complaining her mouth was hurting.  She also started coughing, not moving air, and became combative.  Fortunately, or really unfortunately in this case, I have a lot of experience with swelling airways.  I knew Cora was in trouble, even though our room became controlled chaos.  I will spare you the details mostly because I have already blocked most of them out.  In an instant, I was reminded of how very, very fragile her life is.  Cora has totally recovered and was her normal, horse loving self tonight. 

Tomorrow, I will take my incredibly brave girl to see the horses. 

Be CORAgeous

Give that girl a horse!

Wednesday, December 14, 2011 9:37 PM, EST

written by Heather Dalik

Give that girl a horse!

Santa walks in the door.  Cora says hello and her next sentence is "I want a neigh".  Alright, already, someone please buy that girl a horse! 

Yes, we had an extra special visit tonight from an extra special man.  Santa came to visit us, the real Santa.  He sat in our living room, near our Christmas tree and read "Twas the Night Before Christmas".  We shared Christmas cookies and chatted about our year.  It was truly amazing.  He stayed about 30 minutes and Andrew talked to him the entire time.  "The real question I have is..  is Rudolph real?".  This question has been bothering Andrew for some time.  Grace sat back trying to figure it all out, not saying much.  She did give Santa's beard a tug, just to see if it was real.  Again, Cora asked for a horse. 

Santa was truly magical and our visit will be part of my Christmas memories forever.  The second best part of the night was watching my little girl take in the new experience.  After Santa left, we sat down for dinner.  It has been really neat to see Cora try to participate in dinner conversation.  Tonight, she said with a smile a mile wide, "Mommy, Santa visit".  She knows something special happened tonight.    

I did post some pictures on Cora's facebook page and will get them loaded to the journal in the next few days for those of you not on facebook.

A quick update on the colds - Grace and Andrew have a standard cold, nothing horrible, yet.  Cora is still coughing.  Tomorrow is the IVIG infusion.  It is going to be a long, long day and I am already grateful for the dinner a friend is making.  Please continue to pray that Grace and Andrew get rid of these colds and that Cora's doesn't get worse.  I will update you on the IVIG infusion when I get home.  Pray that everything goes well and Cora doesn't have a reaction to it. 

Be CORAgeous!

Back on the rollercoast!

Tuesday, December 13, 2011 1:04 PM, EST

written by Heather Dalik

Back on the rollercoaster!

We celebrated day 100 Sunday, on top of the world.  Monday afternoon Grace, Andrew and Cora started coughing.  Back on the rollercoaster ride of worry and more worry.  Cora checked out fine at clinic this morning and Nancy reassured me that if she "just gets a cold, it will be fine".  Andrew's cough sounds terrible.  Another day or two and he will be visiting our good friend Dr. Burke.  (Since I know she is reading this - go ahead and schedule us for Thursday afternoon.)  By the time I got home with Cora, she was wheezing again.  I gave her a nebulizer treatment and put her down for a nap.  No coughing so far. 

One of the level's in Cora's blood is down.  I can't remember what it is called but she needs an IVIG infusion.  This will help with her ability to fight infection.  Give the illness that is hitting our house, I said do it today!  It takes 3-4 hours just for the infusion so we are talking about 5-6 hours away from home.  We are scheduled for Thursday, which is going to be the longest day in history.  There are possible side effects so please pray that those are minimal.  Please also pray that I don't loose my mind while trying to entertain an feisty toddler hooked up to iv's. 

We have had many near misses, things that didn't turn into anything.  I am confident that the prayer warriors will get us out of this one without a hospitalization. 

Be CORAgeous!

Happy Day 100!

Sunday, December 11, 2011 7:35 PM, EST

written by Heather Dalik

Happy 100th Day!

This morning we did a re-count and today is day 100!  Our clinic file has it tomorrow but it is official, we are at day 100.  We celebrated our sweet Cora all day.  Creative Daddy came up with a great desert - one twist donut and two round donuts, spells out 100.  Three donuts, three kids.  Of course, we had icecream too.  My sister said, "I can't believe you just let her eat the whole donut and now you are giving her icecream?"  It isn't every day you have a bone marrow transplant.  We sang a made up song, happy 100th day to you and blew out a candle.  No horse appeared in the backyard, although Cora did ask. 

Tomorrow, I will treat myself to my favorite yoga class and Cora will spend a few hours with Rachel.  I, no doubt, will cry most of the class.  "Let it go", Holly will tell me.  Maybe after yoga, I will be able to reflect on the last 100 days.

Be CORAgeous!