one year later

one year later

Written 7 hours ago by Heather Dalik

It has been a year.  A year since the mysterious dropping toys, unsteady walking, and the big bruise.  A year since the low grade fever and a year since day of crying.  Saturday is our diagnosis anniversary.  Assumed diagnosis only took a few hours and it was confirmed three days later.  It is really weird to relive some of the same activities of this week from a year ago, knowing now how fast life can change.  Yesterday, we went to the library for a magic show.  A year ago, we went from the same magic show to the pediatrician to Hopkins.  Yes, I cried at the magic show.

Toady at clinic, Nancy and I talked about what is next.  To many, our journey is over.  Besides short hair and a few scars, it is impossible to tell what Cora has been through.  I hear many times a day how amazing she looks.  Today, I was reminded our journey is far from over.  We are through the high risk time coming off the anti-rejection medicine.  Now, we enter the relapse high risk time.  Travel from one fear to another.  

When you see Cora out and about, she may or may not have her mask on depending on the environment (it is simply too hot to make her wear the mask outside).  Treat her like you would a newborn and please, don't touch her hands.  She longs to touch and hug people so don't panic when she hugs your child.  I have my hand sanitizer in my back pocket.  If you know your child isn't feeling well, ask them to steer clear of Cora at the playground or pool.  A simple cold could still turn into a hospitalization for Cora.  

To answer some of the questions that everyone is wondering - 

She won't go to school in the fall.  Preschool is too germy.

She might go to music class and a kids playgroup just for kids with cancer and weak immune systems.  

She will start having playdates - soon.

Food restriction still stand - no fast food or food that sits out.  No snowballs or soft icecream or anything that comes from a machine.  No leftovers.  Food must be sanitary.  As much as we would like to think it is okay, the bag of goldfish that has been in your pool bag all week, is filled with bacteria that could make her sick.  

Most of all - just ask.  Questions don't make me mad or upset me.  

Saturday we will celebrate the miracle of Cora's life and the bravery of her sister and brother.  At the swim meet, we will wear red ribbons as celebration of life.  Red is the awareness color for Aplastic Anemia. Dig out your Be CORAgeous t-shirt or wear red on Saturday and celebrate life with us.  

Be CORAgeous! 

focus

focus

Written Jul 17, 2012 2:08pm by Heather Dalik

Sarah's homily this morning - focus.  Focus on the storyboard in your mind, the stories you have with Sarah.  Pictures, events, and moments.

In the church, I reflected on when I met the McMahons.  I responded to an add in the newspaper (ewww - I know, this was 16 years ago).  They needed a nanny for their infant.  I was drawn to the ad, drawn to the interview and drawn to the baby.  Little known secret - I don't do babies!  I did not set out to be a baby nanny.  But, drawn like a magnet to this little creature.  And that is how we went for many months to come (neither Deb nor I can remember at what point I got my teaching job and left them).  Sarah and I would play, take walks, and do craft projects.  I remember when she started eating solid and how feeding her took all morning.  I remember when she clapped for me for the first time.  Mostly, I remember thinking this baby was special.  

The last time I saw Sarah, they were preparing to travel to St. Jude.  She looked so good and I commented that it was impossible to see the war being waged inside her body.  "I know, but how is Cora?", she asked.  Her focus was always on the others around her.  I wanted to talk to Sarah, to give her some of my strength and give her the power to fight.  She wanted to talk about Cora (who was running around, amusing everyone at clinic)

I have spent the last two days crying, until I could cry no more.  I think this might be the big meltdown that Bridget warned me about (I am okay if this is it because I have been fearing the melt down.)  On the way home from the funeral today, I digested the message - focus!  Focus on Grace, Andrew and Cora.  Focus on healing our family.  Life had started to creep back in and my focus was blurry - too many activities, too much running, not enough time together.  Focus!

It was an honor to have known Sarah.  

Be CORAgeous!

quite a week

quite a week

Written Jul 15, 2012 9:20pm by Heather Dalik

This is going to be quite a week.  Today, I did what I always do to clear my mind - I purged the house.  After spending several hours taking my anger out on the garden weeds, I started on the attic.  Our attic is where all the bugs go to die.  Oh, yeah that is also where the toys we aren't quite ready to part with are.  I sorted, cleaned, made piles, and threw away or donated bags and bags.  The two little kids kept out of my way, oblivious to my pain and anger.

Dear Grace kept one eye on what I was doing while she "played".  Maybe she was worried about me but she has the hoarder gene.  Every third item slotted to go out, came back in.  Quietly, and without words, she would leave her "play" (which was just a guise for "I am watching you") and retrieve the beloved item which no one has looked at in 6 months.

Getting rid of things clears my mind.  Many, many hours later our attic storage spaces and playroom are in order.  A garage sale date has been selected.  Thank you Sarah (and Jeff too because he allowed himself to be bossed around all day)

Tomorrow is Sarah's viewing and Tuesday is the funeral.  Ironic, that Cora has a clinic appointment at the same time as the funeral.  I will reschedule the clinic visit since Cora looks great.  This is a huge step for me because for the first time in nearly a year, I will not be putting Cora first.  

Tomorrow morning I have plans to head over to my "favorite" bank and pitch a royal one about the fact that my accounts are still frozen and I have no access to my money.  Someone isn't doing their job and I plan on fixing that.  So, if you hear a news report about a woman who took her three kids into a quiet bank and had a parade through the bank - it wasn't Grace on the drums, Andrew on the cymbals, and Cora on the harmonica.  My sister suggested that someone who would carry out a plan like this, might get arrested.  How about the irony in that?  

Be CORAgeous!

Sarah

Sarah

Written Jul 14, 2012 7:09am by Heather Dalik

I am sorry to be the last one to post this.  I went to bed, unable to handle the reality that Sarah is gone.  Cancer took our strong warrior at 5:00 Friday night.

 This isn't how the story was supposed to end.  Cora was supposed to grow up with Sarah, hearing stories about when they were sick.  Sarah was supposed to be the "cool adult" in Cora's life.  The one who knew about sickness, the effects of chemo, and how sickness changes you. 

I am thankful that Cora is too young to know her friend is gone.  I will handle my grief today at the swim meet.  I will stand in the rain and hope it washes the grief away.

Be CORAgeous!

Update on Sarah

Update on Sarah

Written Jul 12, 2012 8:02am by Heather Dalik

This is Debbie's update on Sarah (from yesterday)  Please pray for our fighter.  She has so much life left to live.  She must beat this cancer and the monster chemo.

The last two days have been extremely difficult days. On Tuesday morning we had to make a decision to help Sarah's heart to work. She became so sick that her heart was laboring to work and her breathing became rapid that she had to have a breathing tube put in. When they did this early Tues. Morning her heart stopped and she had to be defibrillated. Then all the doctors came in and we talked for an hour about how best to help her. The doctors talked about an ECMO
(google it) it does the function of the heart , life support, so the heart can rest, or did she suffer too much trauma from the chemo to get past this. We said we have go in and ask Sarah. Sarah couldn't talk because of the tube in her mouth but she could blink and squeeze Dan's hand. Dr. Gamper explained what he wanted to try and he asked her if she wanted to fight? We asked her a couple times to answer and I asked her to blink her eyes 3 times if she wanted to try the ECMO and she blinked and squeezed Daddy's hand and pursed her lips and tried to speak and Dr. Gamper said "well that was a loud and clear Yes" .
She is a fighter and did we expect anything else! So that set the doctors off and running to get this set up. This took most of the day to get set up. Very complicated machines. They also set up a Plasma aspheresis, which is similar to what Dan did for Sarah in Memphis with the NK Cells extraction. It takes out Sarah's plasma and replaces hers with someone else's. The Dialysis machine also connects to the ECMO machine. We thought things would quiet down last night so we could get some rest but at 11 pm she was having fluid around the heart and she had to have a Pericardiosentesis, Which is when the fluid around the heart has to be aspirated. That was finished about 12:30 am. This morning, Wed. They did another exray and sonogram and found fluid around the lungs so it was another long day of working to help her with the tubes and machines and blood pressure meds and around 4 the tubes were placed in her chest to drain the fluids away from her lungs. That took a couple hours to complete and they have to balance the blood pressure while draining fluids which was very tricky. So much sickness flowed away. The left ventricle of the heart is still weak and doesn't squeeze hard enough to pump so they will administer some meds later tonight if the BP meds are lessened that will give some support there. Now it's 10:50 pm and the team is moving around moving things. Her blood pressure is a-little high now. It seems to be one or the other. We are hoping for a boring nite.
We love you and thank you for your strength and love and prayers. Thank you for the tributes to The CaringBridge in honor of sweet Sarah and all your prayers and notes. 

Be CORAgeous!

In the wrong line of work

In the wrong line of work

Written Jul 10, 2012 9:29pm by Heather Dalik

Apparently, Jeff and I are in the wrong line of work.  Mr and Mrs Pond Scum will continue to go about their lives, committing federal crimes for income.  I am seriously considering a life of crime because it certainly pays better than my current job.

The bank closed the fraud investigation, gave us our money back, end of story.  UPS and the Postal Authority don't care if the checks were stolen off my front porch.  The check company doesn't care that someone ordered out of our account without our permission.  Verizon doesn't care that we didn't turn off our service.  The police?  I am not even going to go there.  

And if I hear another completely insincere "I am sorry for your inconvenience", I am going to get Gretchen to come up with a snappy comeback!

Please continue to pray for Sarah.  She was unable to get the 5th monster chemo dose because her body was too toxic.  Pray that her body recovers and is leukemia free so she can move to transplant.  

Jackson got his port put in today, which is a huge recovery step.  Yeah Jackson!  

In all the stuff I have been dealing with, I totally forgot to mention our good news.  Cora's numbers looked so good at clinic last Thursday, we get to skip a week!  We are putting 10 days between visits.  This is huge.  I have instructions to check her daily (interpretation - every time she walks past me) for signs of GVHD.  Nancy said "I am always here if you need me.  Just call." (interpretation - go have a glass of wine) as I walked out the door.  10 days!  

Be CORAgeous!

Wait, it gets better....

Wait, it gets better....

Written Jul 9, 2012 1:33pm by Heather Dalik

I spent three hours at the bank this morning, closing and opening our accounts.  I am sure the bank rep thought I was a luney.  Short fuse?  Yeah, that was me this morning.  It all started with "Mrs. Dalik, we cannot do anything for you unless your husband is present."  He is four store fronts down, you know who he is, draw up this paperwork right now and I will get him over here to sign it.  He is not going to sit here and watch you for two hours.

No, you can't have free checking as we don't offer that type of account anymore.  YES, you will give me the same account that I had before and NO, I will not pay for the new checks and deposit slips.  

You can see how the morning went.

THEN, my bank rep says "Wait, you just ordered checks on 7/2"  WHAAAATTT?  When I look at my account at home, there is no evidence of checks being ordered.  In fact, checks were ordered on 7/2 and delivered UPS to my front door on 7/3.  Astounding!  I am sitting there in dismay, wondering how this could happen, how did they get the checks?  

Right there, in the quiet of the bank I realized - AHHHHH, Grace and I SAW the guy get out of his car, come on the porch and leave.  Strange cars in our driveway always make me pay attention.  The guy got out of his car, came up on the porch, bent down near the door mat (I was standing in the stained glass watching him.)  then he went back to his car.  I figured he put one of those flyers under the door mat so I didn't even open the door.  I did, however, notice he had something blue in his hand.   That was MY box of checks, wrapped in blue plastic!!

Reading this story, it sounds like a circus.  A calculated bit of malicious intent aimed straight at us.  So, pond scum, if you happen to be reading this, you have done your damage, robbed me of many hours and my sense of security.  Move on but watch out for karma because it will get you, if I don't first.  

Hearing all the phone calls and the mad voices, my sweet daughter just brought me a handful of Swedish Fish.  My girl knows just what to do!  Handful of Swedish fish and hug from the big girl - all is right in the world.  

Be CORAgeous!