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!

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!

What to do?

What to do?

Written Jun 14, 2012 9:53pm by Heather Dalik

No medicine at 8:00.  It is so strange.  For 9 months, I have lived by 8:00, watching the clock morning and night to be sure I didn't miss the window.  Suddenly, I feel free.  Cora doesn't get any medicine, except Saturday and Sunday.  I think we came home from Hopkins with 9 medicines to be administered several times a day.  That was 9 months ago.  

Tonight, I called Andrew to take his asthma meds.  "Me too Mommy", the sweet little voice asked. 

"No Cora, no medicine for Cora." 

"Oh WOW Mommy, Wow." 

That about sums it up.  

The next 30 days when Cora is most at risk for GVHD.  Her potassium levels are still high.  We don't go back to clinic until next Thursday, which will be a full week off the cyclosporin.  Please pray that GVHD stays away and those potassium levels come down.  

Be CORAgeous!

Silver lining and a cancerversary

Silver lining and a Cancerversary

Written Jun 12, 2012 2:48pm by Heather Dalik

At Gretchen and Amy's encouragement I am trying to see the silver lining.  Here is what I came up with last night as I shivered in bed with 103 fever - 

1.  Strep has ping-ponged back to Grace.  Now, she has scarlet fever too.  Silver lining - she is so sweet when she is sick

2.  I have strep, double ear infections, and high fever.  Silver lining - Jeff stayed home most of today so I could sleep.

3.  Dr. Skippy (Gretchen's term for overzealous young doctor) told me there was no way my self diagnosis was correct "You look too good for that diagnosis" he told me.  Silver lining - Maybe he was hitting on me.

4.  Prescriptions are expensive.  I have filled 9 prescriptions in two weeks.  Silver lining - in 42 short days we met our insurance deductible for the year.  My prescriptions last night cost $0.  Quick investigation revealed that we have met our $2400 deductible, although the bills haven't come yet.  This means all future prescriptions "should" be $0.  Now, we will tackle that much larger number called "out of pocket maximum".  

5.  Cora takes her last dose of cyclosporin (anti rejection medication) tomorrow night.  Silver lining - I will no longer have to feel bad when she cringes from the taste.  She will be down to one medication administered only on Sat and Sun.  

6.  This is the first week of summer vacation and we are spending it on quarantine.  Silver lining - the kids don't seem to mind.  I am not sure they realized summer has officially started.

So, stay clear of my house and my kids for a few more days.  I hope we are well by the weekend.  We have a very important birthday party to attend.  This brings me to the Cancerversary.  I had no idea there was such a word.  If I felt better, I would head out to the Hallmark store to see if there is a card for this milestone.  A Cancerversary is a cancer diagnosis anniversary.  Today is Amy's Cancerversary.  Today, 4 years ago, 38 weeks pregnant, Amy found out she had cancer.  4 days later Amy delivered a healthy baby girl and started treatment a few weeks later.  Amy spent the first year of Kira's life enduring chemo and radiation.  Her family rallied together and took care of Amy and her newborn.  Amy and Craig got through that year and went on to have Khloe (who shares a birthday with Cora).  

Jeff and I met Amy and Craig a few months before Cora got sick.  I have to admit I struggled with the notion of what we possibly have in common since she is something like 14 years younger than I am.  (I laugh all the time that her father and Jeff are the same age!)  Chemo, hair loss, new friends, lost friends, soul searching, and celebration of our medical successes are what we have in common, not to mention strong willed girls and independent toddlers.    

I am pretty sure my journey would have be tons lonelier if I didn't have Amy.  "Show me your port scar", "How was it without hair?", "What did you do when people stared at you?", "Are you scared of relapse?", "Did you plan your funeral?", "How do you get through the hard days?" - all my questions she answers with a smile and sometimes a laugh.  She brings me lunch when I need it and talks me through things, no matter what time of night.  We laugh at our girls as they become independent toddlers.  She loves my kids as if they were her own.  She will be Grace's "cool adult friend" who shares a love bling and fill in where Mom won't do.  

Critical illness isn't something you wish for but when you are handed it, you have to make the best of it.  Today, Amy told me she would spend the day reflecting and thinking about all the awesome people she has met as a result of cancer.  Today, I will celebrate my dear friend Amy, her cancer and our friendship.  Livestrong, my friend!

Be CORAgeous!

Welcome to Summer

Welcome to Summer

Written Jun 11, 2012 6:42am by Heather Dalik

Today is the first official day of summer vacation for the big kids.  Cora is out of her mind happy with the news that she will no longer have to say goodbye to them each morning.  "You stay home today?", she has asked each one.  This will be "transition week" as I call it - getting used to being with each other all day long.  I predict everyone will be on sticker charts for behavior by Wednesday.

Grace is starting out summer with a bang.  She hasn't been down with illness for an entire year.  She has strep and woke up yesterday with a fever.  Today, she has a nasty cold and a fever.  After waking me up at 6:00 this morning, she is sleeping on the sofa.  She is such a good girl when she is sick though.  She set up her station by the sofa with books, water, snacks and her blanket.  All she wants is an occasional snuggle. 

I worked the Cape St. Clair Strawberry Festival on Sat and unloaded tons of inventory.  I am so grateful that my customers came out and saw me.  I have come to believe every person you meet is for a reason.  The vendor next to me is a 2 time leukemia survivor.  She was 2 when she was diagnosed.  The first thing out of my mouth?  "Show me your scars!"  She had a central line twice.  The crazy thing is as she has grown, the scars moved and they are almost under her arm.  We didn't get to talk much but I plan on connecting with her too. One day I am going to get all the amazing people I have met together, in one room.  We all have something to teach each other.  

A quick update on our pals - Faith was seen feeding the ducks over the weekend at Patterson Park.  This tiny bit of normalcy is nothing short of a miracle.  It is predicted she will be in transition housing through July.  Jackson is prepping to leave transition housing.  

Alyssa's rollercoaster ride took a dive over the weekend and she could use some prayers.  She had a spinal tap on Friday and chemo but has something going on in the tap area.  "Something going on" is never a good phrase when your kid has cancer.  

Cora has clinic this afternoon.  She has already requested to wear her "squeaky shoes" to clinic.  This will be a big week for Cora.  She takes her last dose of the skunky anti rejection medication on Wednesday.  This is bitter sweet.

Be CORAgeous!

Strep

Strep

Written Jun 4, 2012 7:23pm by Heather Dalik

Strep throat has hit our house.  In a matter of days, the whole family will be down.  You think I am kidding?  Sweet Grace came to me at 11:00 yesterday morning, "Mommy, my throat hurts"  One look and I knew what was coming.  She made it through her family party on the motrin/tylenol cocktail.  She was mostly polite to her guests but it was easy to see she didn't feel well.  She went to bed as soon as everyone left, nestled in my bed, surrounded by her gifts.  She wanted to pay attention to them but didn't have the energy.  

This morning we brought all Grace's gifts downstairs and she played with them on the sofa.  Between naps, she looked at her treasures.  I love seeing Grace happily spoiled.  

Cora continues to deal with her sore throat.  She hasn't gotten any worse but I am not sure she is much better.  She only had a few meltdown tantrums today, as opposed to a few an hour.  This is progress, I suppose.  She saw Nancy today at clinic.  Nancy did a few other cultures, just to make sure nothing else is going on.  Cora was also tested for mono and it takes a few days to get that test back.  Her potassium and kidney levels are still very high, despite the significant drop in cyclosporin.  I was hoping we could get back to banana's and oranges but not yet.  We will be playing the waiting game for her liver/kidneys and gvhd.  Nancy mapped out our summer clinic visits - we will be once a week through July just to keep track of things.  I haven't figure out how that is going to work with school being out.  

Andrew is going to start a preventative antibiotic.  If I don't do that, he will be the next to fall.  He came home from school and laid on the living room floor like he was going to fall asleep.  Maybe sympathy pains for Grace or maybe he is next.  

Yesterday, I emailed a friend - "Grace has strep, Cora has strep, I have poison sumac so bad I think my arm is going to fall off.  I am done."  Gretchen encouraged me to see the silver lining, we made it through Grace's birthday and Cora seems to be handling her strep (although have you EVER seen strep with no fever?)  Every so often I get "done" with this journey.  I want it to be over and I mourn my other life.  The life where no one felt sorry for me and worries were insignificant like what to have for dinner.  So, thanks to Gretchen and Amy who knew just what to say to get me to see the silver lining.  

Thanks guys!

Be CORAgeous! 

Mini Me turns 9

Mini Me turns 9!

Written Jun 3, 2012 6:42am by Heather Dalik

Today is Mini Me's birthday.  Grace is a "mini me" in every sense of the word.  Friends from elementary school marvel at the likenesses between 9 year old Grace and 9 year old me.  Grace shares every love I have, whole heartedly.  She spends her time sewing, reading, working in the garden, creating new things, refurbishing the old, and organizing things.  She loves physical activities and is an amazing swimmer and runner.  She comes from a long line of women who like to control their environment and I can tell you that trait didn't skip a generation.  Jeff and I use the phrase "Out manipulate the chief manipulator" when we have to make Grace think something was her idea to get her to comply.  We are convinced her tenacity and dedication to a cause will prove to be a good trait as she enters the adult world.  

Last night Grace asked me to tell her birth story.  Like most Mom's, I remember it vividly.  My principal suggested I leave school two weeks prior to Grace's due date.  This would be better for the kids if she came early and if she was late, I would have some time to myself.  I said goodbye to my students and packed up my classroom.  I wondered what I would do with my time.  That weekend, I nested. Monday night, I dragged my swollen body to my last yoga class.  I did yoga several times a week during my pregnancy, my friend Suzi always positioned to my left.  Our yoga instructor and friend Pam delivered a mediation about pregnancy, delivery and motherhood that was so heart felt and a wonderful way to pay tribute to our baby girl. She closed the mediation by asking everyone to send energy for a peaceful delivery and recovery.  Well, I guess there was a lot of energy coming my way because we picked up our yoga balls, lifted them over our heads, put them on the floor and did a fold over stretch. In that exact moment, I heard that tell tale POP and fluid was everywhere. 

 "Suzi, Suzi , what is it like when you water breaks?" (just trying to verify I hadn't peed my pants) - I whispered.

 

"OH MY GOD.  PAM, PAM, Heather's water just broke." - Suzi screamed.

Thank you energy!!

Before I knew what was happening, the lights were on, people were throwing cellphones and towels at me.  I was whisked to my car and driven home by a pair of angels (whom I have never seen again). Someone cleaned up the floor and threw my soaked yoga mat away. Jeff came home from work, we made some phone calls and cleaned up the house.  We got the carseat installed at the fire station (something first time parents do) and waited. And waited and waited and waited.  At 2:00 in the morning, my midwife called "Are you absolutely sure you are not in labor?"  If I was in labor, I didn't know it. Nothing was happening.  We went in to the hospital in the morning and got the dreaded pitocin.  Five short hours later at 9:52 pm our baby girl entered the world.  My Mom and sister arrived within moments and got to share in our joy.  I will never forget my midwife putting Grace on my belly. I said "Hi there baby girl".  Her head whisked around to look at my voice and let out a coo, as if to say, so glad to be in your arms.  The whole room stopped at that amazing sight.  

Grace has continued her amazing trend.  Becoming a big sister to Andrew and surviving the toddler years.  She was the happiest when we told her I had another baby in my belly (June 11 - Grace remembers every single detail).  She tracked my pregnancy and announced she would be moving out if our baby wasn't a girl.  She knew I was in labor and got up to be with me in the middle of the night.  She was over the moon happy to hold our new little girl.  

Through out Cora's illness, Grace has never expressed jealousy of the attention Cora needs.  She worries with all her heart about Cora. She needs to know every single detail of Cora's illness and, like me, tries to control the things she can.  She got right into the middle of fund raising and started her own fund raiser selling bookmarks at school. Like me, she had to "DO" something.  She doesn't complain about the lack of activities or playdates.  When she asked me for a birthday party so that she could have "something that is just about me", I created the most amazing outdoor garden party (after I took the knife out of my chest.  Seriously, where do kids come up with this stuff!?) 

Yesterday, we celebrated Grace's birthday with 12 of her friends by creating "Grace's Garden".  Her friends and I created a garden with flowers chosen just for Grace.  The girls understood that they couldn't go in the house and I marveled at the compassion of Grace's friends. Thankfully, Cora slept the entire party.  

So, to my amazing 9 year old, Happy Birthday.  The next 9 years will be filled with change as you grow up and leave the nest.  I can't wait to watch you and your garden grow.

Be CORAgeous!

Ps - Cora is still fever free.  That, my friends, is another true miracle. We may have used up another one of our 9 lives but it was worth it.

Strep

Written Jun 1, 2012 10:48pm by Heather Dalik

Sorry for the delayed post on Cora's weekly clinic visit (yes, we are still going once a week!)  This week we saw our fellow but Nancy stopped by to say hi.  Sunday, I noticed Cora's voice was different so I looked in her throat.  We have been watching her tonsils, which seemed to be slowly growing over the last month.  Her tonsils were HUGE, beyond huge, so huge I was wondering if she could breathe.  Since there were no other symptoms, I waited it out.  No symptoms on Wed but we went ahead and did a throat culture.  I haven't heard anything so I will assume everything is okay.  Her counts were good and her potassium level appears to be coming down, which is great news. 

So, this is how it goes around here.  It is 10:54 on a terribly rainy Friday night.  I am writing my journal entry before I fall into bed. The phone rings.  There are two reasons the phone would ring at 10:54 in the evening - someone broke into the bike shop or it is Hopkins.  Yeah - Cora has strep.  I have already told myself 20 times in 2 minutes NOT to freak.  Yet, I am freaking.  Now, one of us has to bear the rain to go to a 24 hour pharmacy and get a prescription asap.  Please pray hard for my girl.  This cannot turn into something that means hospitalization!  Cannot, cannot, cannot.  I must be here, at our house to celebrate my sweet Grace's birthday this weekend.  I cannot go to live at Hopkins, not this weekend.  Please..... 

Be CORageous! 

765 retires

765 retires

Written Jun 1, 2012 6:16am by Heather Dalik

765-7055 retired today after 29 years and 10 months.  For all those years, I have dialed 765-7055 to talk to my Mom during the day.  Today, that number officially retired.  I still remember the day my Mom went back to work.  After a few months on the job, she allowed me to call her at work when I got home from school.  I was so nervous because the phone was so foreign.  Who knew where those numbers would take me?  Mom taught me to dial the number and polietly say "Could I please speak to Judy Thompson?"  This phrase followed me into my teen years where it became "Is Judy Thompson there?".  29 years and 10 months later I still dial             (410)765-7055       and say "Is Judy Thompson there?"  

When Cora got sick, my Mom's coworkers were the first ones there.  I have no idea how many Be CORAgeous braceletes are floating around Northrop.  The donations and meals that came from total strangers were overwhelming.  Really, they aren't total strangers though.  For 29 years they watched me and my siblings grow up, through pictures on Mom's desk and endless stories.  They felt the joy of our life accomplishments and shared the pain of sudden death and illness.  Mom's work friends are her other family. 

So, after 29 years and 10 months I say goodbye to             (410)765-7055      .  Goodbye to all the voices who answer her phone, who know me but I don't know them.  Thank you for 29 years of supporting our family!  

Oh and Denise, when I call next week, simply laugh your infectious laugh and tell me my Mom is in another building and I can reach her at her new number.  

Be CORAgeous!

Prayer request

Prayer request

Written May 25, 2012 8:46pm by Heather Dalik

We rounded out our four days of family fun with a torture ride home.  I am starting to think we should just put the kids in the car and drive them around for hours on end to get them used to it.  Other than the drive, our trip was wonderful, amazing and very relaxing.  It was great to see the kids explore nature, nearly every second they wanted to be outside.  We searched for bears but only turned up a very cool orange salamander that we can't find a name for.  Cora has spent this week watching me put away things from the trip and constantly talks about the mountain house.  The kids are very excited to go back again. Thank you to Believe in Tomorrow!

This week's clinic visit brought some news that I was expecting but brought on tons of anxiety none the less.  Cora's liver function levels are still high, too high.  The team decided to take her off the anti-rejection medication three months early.  I knew this was a possibility but I am still filled with worry.  Keeping her on it could further damage her liver while taking her off could bring on GVHD.  Once she shows signs of GVHD, there is no going back.  I had to ask the hard questions - 

What do we do if she gets GVHD?  We hope it isn't that bad and treat it with steriods and other meds.

Could her body reject the donor marrow and her own marrow not come back?  yes

Could her body reject the donor marrow and her own marrow come back with Aplastic Anemia?  yes

What do we do then?  We cross that bridge when we come to it.

Nancy could sense my fear and tried to give me the statistics. Cora has all the factors in her favor - age, sibbing match at 100% and blood type match, no gvhd so far.  Still, I can feel that old elephant on my chest coming back.  We won't know for several months as the wean off process takes a month.  

It actually took me several days to do this entry because I am so worried about the outcome of taking her off the medicine.  When Cora was at her sickest, I just wrote.  Maybe, I didn't fully understand what I was writing.  Maybe, I wasn't connected to it.  I looked back in my entries and couldn't find one time when I talked about the possiblity that Cora could die.  Looking back, I can think of several times things could have gone tragically wrong but they didn't - like a cat and his 9 lives. This time, I am filled with worry that we have used up our 9 lives.  So, please continue to pray for Cora over the next few months.  We will handle this like we have handled everything else - with courage and strength.  

Be CORAgeous!