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!