Heart melting

heart melting

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

"Mommy, can I have some grapes?"

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

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

All is good in the world.

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

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

Be CORAgeous!

Random acts of unkindness

Random acts of unkindness

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

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

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

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

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

Please pray for 

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

Alysaa during her monthly steroid weekend

Jackson and Faith as they continue to soar after their transplants

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

Be CORAgeous!

Up then down

Up then down

Written Jul 5, 2012 1:32pm by Heather Dalik

We had an early clinic appointment this morning.  Nancy and I talked at length about Cora's liver numbers.  I got to see them graphed by date.  Standing over Nancy's shoulder, I couldn't help but to think of Duane and Lynn (former principal and reading specialist).  The voice in my head said "I wish Duane was here.  He would know just what these numbers mean, be able to see what the rest of us can't and he would know how to fix it."  He and Lynn would look at the trends and try to determine why the numbers are going up, when they should be going down.  So, I put my emotions aside and looked at the data.  I asked the questions my friends would have asked.  

Why are the numbers going up instead of down?  Bugs and drugs is the answer.  Look at medicines that would be making the numbers go up - none.  Look at bacteria/virus' that can make the numbers go up - nothing to report but maybe an after effect of the strep.  After looking in detail at the three sets of numbers, Nancy convinced me this is just something to watch but not to worry.  It does not appear the liver is connected to the rash (which is almost gone)  It could be gvhd in her liver but the levels aren't high enough to do anything.  So, again we wait.  Remember, I am not good at waiting and waiting breeds worry.  

The numbers from today showed a slight (so slight it isn't worth mentioning) decline but the good news is the numbers didn't go up.  So, we wait. 

My dear Sarah is in bad shape.  God (and cancer) brought Sarah back into my life after 16 years.  I believe that we were brought back together again for a reason and maybe it was so I could have a role model for how to fight the unimaginable.  This is the message I got today - 

Sarah is back at Hopkins. Unfortunately, her treatments in Memphis were unsuccessful. Now she is undergoing multiple rounds of very intense chemo for a couple days to get her bone marrow test and, hopefully, the transplant. Earlier this week Sarah was given two options: keep fighting and endure the intense chemo or give up and "enjoy" the rest of her "healthy" life. Thankfully (but not to our surprise), Sarah chose to stay strong and endure. Keep her in all of your prayers. It's the least we can do.

Things move quickly in the oncology world and Sarah has already endured the first of 5 chemo treatments.  This chemo is the top dog, the highest dose, there is nothing stronger.  Her liver is already suffering after day 1.  Please pray that she makes it through the chemo and her body does not suffer irreversible damage from this super drug.  

Be CORAgeous!

Rash Update

Rash Update

Written Jul 2, 2012 5:04pm by Heather Dalik

The rash is gone.  This is the power of prayer.  Please continue to pray for the rash, or lack of a rash. 

 

Be CORAgeous!

Ps - If you have seen me around town, you know the rash actually has been gone since Saturday but I was afraid I was seeing things.  Putting it on Caring Bridge makes it real, as in really gone

Rash

rash

Written Jun 29, 2012 8:40pm by Heather Dalik

I was reminded twice today how lucky we have been throughout this journey.  Cora has, for the most part, sailed through.  Even so, this has been a wildly stressful year.  You can't imagine being me and I can't imagine being the parent of a girl who didn't have a bone marrow match or of a girl whose transplant didn't take.  I have tried to keep in mind no matter how bad it is, there is always someone whose child is sicker.  

We have been praying like mad that Cora would avoid Graft versus Host Disease in the month following the cyclosporin wean.  The most obvious gvhd would appear as a sunburn like rash.  Three days ago, I saw the rash.  It is in on her legs.  Is it gvhd or eczema?  Let's flip a coin and hope it lands on eczema.  At this point it is impossible to tell but I can tell you the discussion points at clinic today - 

    might be eczema but might be gvhd

    wrong time of year for eczema but Cora's skin is dry

    liver function is still high but stable - may or may not be connected

    potassium level is good but she can only have one banana a day

    

The solution - load her up on good, heavy lotion several times a day and wait.  Yes, wait.  I hate waiting. I am not a good waiter.  I want answers now.  

Please pray for eczema, which in turn means no gvhd.  

Be CORAgeous!

4 days of fun!

4 days of fun!

Written Jun 25, 2012 9:38pm by Heather Dalik

Tonight Grace asked "Are our four days of fun over?"  We have had the most fun in the last 4 days.  4 days of just being kids, being a family and having fun.  We started out the weekend with an impromptu picnic with our pal Alyssa and her family.  The picnic went indoors when the rain came.  Anxiety city!  Seriously, Cora has only been in our house and once to my Mom's in the last 11 months!  It just happened that ALL the kids went downstairs and Cora was upstairs, playing by herself.  Indoors is waaaay different than outdoors for germs but we got through.  Actually, I was fine once we got settled and I saw how things were going to work out.  Alyssa's house is a sick kids house too, masks on the corner shelf, so I knew it would be fine.  Cora was so excited to report to Jeff "Daddy, Daddy I went to someone's HOOUSSEE!" (He got lucky and went to a concert.)  

From there, the weekend just got crazier.  Saturday was our first swim meet and both kids were happy with their swims.  In the afternoon, we went to another outdoor party.  Cora is starting to think every thing is a party.  It is so much fun to sit and watch her take it all in.  Now that she isn't afraid of every sound, movement, and stranger we are having fun.   Sunday was our 12 year wedding anniversary but we got really lucky and were offered Orioles tickets, only 2 though. The debate - we got engaged at a game, it is our anniversary. Should Jeff take Andrew who is desperate to do to a game or should Jeff and I go?  In the end, Jeff and Andrew went because for us, our anniversary is about celebrating what our wedding created - our family.  

We had a picnic in the park that evening and listened to some big band music.  Life according to Cora - another party!  She stole the show and I am certain the band was happy to see us go.  Happy Anniversary to my other half.

Today, Grace and I had a girls day at American Girl.  We were so lucky to be invited on a special girls tea with our friend Kira.  Amy (mom), Robin (mommom) and I enjoyed watching the girls take it all in.  Grace is so fortunate to have grandparents who keep her stocked in American Girl gift cards just for these occasions.  

So, here I am at 9:30, struggling to stay awake.  The house is a royal mess and the kids will be shocked to find the party is over and tomorrow we will clean up the party messes.   

The message I got during our 4 days of fun - keep it simple.  Most of our fun was completely free and very simple, the things others take for granted.  The kids had a blast, declaring this the MOST fun weekend ever.  In the last 11 months, we haven't spent any time like this playing with friends, staying up late, eating too much sugar.   I am pretty sure they could pass on the staying up late and sugar but the friends?  They are already talking about what friends we can see this weekend.  

Have a great week and make a plan to visit someone you haven't seen in a while.  

Be CORAgeous!

It's a happy, happy day!

It's a happy, happy day!

Written Jun 21, 2012 9:36pm by Heather Dalik

"It's a happy, happy day and that's ok, were gonna eat strawberries today!"  This is a made up song that Cora and I sang all the way home from clinic.  She was thrilled to hear that strawberries can now be on the menu.  Cora is one week off the cyclosporin and I can start adding in all the fresh fruits and vegetables Cora hasn't eaten in 11 months.  I have to clean and peel as much as possible but at least there are no more restrictions.  We thought the day couldn't get any better until...

we came home from the library to see a message from Nancy.  I hate that feeling of waiting for the message to load and the caller to get to the point.  Serious dread filled my head because I knew the call was about Cora's potassium level.  4.3 - wahhoo, in the normal range. Cora promptly ate two bananas, which she declared "delicious".  She asked for a third but we didn't have any more.  I promised her I would make a trip to the grocery store tomorrow.  Time to add bananas back onto the weekly list.  Andrew was equally thrilled.  His comment was "Good, now I won't have hide to eat bananas".  My sweet boy has been hiding when he eats bananas because he didn't want Cora to be sad.  

Cora continues to do great almost 10 months, post transplant.  We are coming up on our one year anniversary.  I am certain that will be a day of reflection for Jeff and I.  The kids came up with "Kids Day", a celebration of being a kid just like Mother's Day or Father's Day.  We are going to celebrate Kids Day on July 21, this year and every year to come.  I will keep you posted as the festivities come together. Maybe we could make Kids Day a Hallmark holiday!  

Kristin (from the cruise) is working on a special project for Cora.  She is too young for an official Make a Wish so we are doing something special to honor her journey.  Kristin is working to get supplies and a few handy people to help build an outdoor play house in our back yard.  She is working to get it built for Kids Day.  Let me know if you are interested in helping or check out Cora's facebook page for Kristin's contact information.  

We got our Flashes of Hope pictures this week.  Those pictures were taken in March but truly show the feisty side of Cora.  She told me as we were driving to our appointment "I not taking pictures today" and that held true.  I ended up in tooooo many pictures, as I was barely showered that day.  The photographer promised to crop me out but must have forgotten.  I will upload those photos and some of Cora enjoying strawberries and bananas over the weekend (I tend to need a little help with this for some reason.)

Please continue to pray for no GVHD.  Three more weeks and the most crucial time will be over.  

Be CORAgeous!