Thank you!

Tuesday, October 25, 2011 6:40 PM, EDT

written by Heather Dalik

Surgery to remove Cora's centra line and replace it with an under the skin port, went well. Her wake-up wasn't so pretty and that has continued through the day. I felt like she was getting a fever so I took her temp and nothing to report. At the dinner table tonight I asked her what was wrong and she pointed to her neck, right where the incision is. She must be in pain so I gave her tylenol. Please pray for an uneventful, sleep-filled night.
My Dad was released from the hospital today. They don't know what caused the incident or really what happened. That, in its self, is scary. For now, I am not hoping a plane to Tampa. Thank you for the prayers for him.
I am constantly in awe of the support of our friends. All the kids bed linens are washed and flea free, thanks to a friend. My grass is cut, thanks to a friend. My kids had a great dinner, thanks to a friend. Another supporter called yesterday with advice about how to get rid of the fleas, hopefully without using chemicals that could harm Cora. I have done everything he suggested so we will wait and see if it worked. Keep your fingers crossed.
The emotional tole this journey is taking on me is starting to be obvious to those around me. Thank you to everyone who has held me up this week.
Please pray that Cora remains infection free, especially after all that she was exposed to today at the hospital.
Be CORAgeous!

a few prayer requests

Monday, October 24, 2011 12:16 PM, EDT

written by Heather Dalik

A few prayer requests

This morning in clinic I was writing my journal for today in my head - all happy, happy, happy! The Cruise for Cora was amazing. The support was unforgettable. There are so many people to thank and now I can't remember a single one of them! As soon as I walked in the door from clinic, my Dad called. He is in the hospital. They really don't know what is going on but it is heart related. He might have fluid around his heart and is waiting on a second opinion. Ordinarily, I would have been on the next plane to Florida. I know life is a test of strength but this is getting a little ridiculous!
I promise to circle back around and say thank you's to everyone who participated in the cruise.
Cora is getting her central line replaced with a port under her skin. This will make our life slightly more normal. Cora and I have to report to Hopkins tomorrow morning before 6:00 (a.m.!!!) Surgery is scheduled for 7:30 and should be under an hour. We will post on facebook when she is out of surgery.
In other news, we have a flea infestation at our house and bike shop! Seriously! Grace and I are itching from head to toe and now Cora has bites. She has no immune system to fight the bacteria fleas carry so we have to flea bomb the house. More chemicals into our environment.
I am trying to take all the little things today in stride. My mood from last week has lifted, most likely due to three days of exercise last week. What a recharge for my soul! I know my Dad is going to be okay and Cora will do fine in surgery tomorrow but pray for us anyway.
Be CORAgeous!

More good news!

Friday, October 21, 2011 10:39 AM, EDT

written by Heather Dalik

The good news just keeps on coming. Cora will have her central line removed on Tuesday and replaced with a port, which is under the skin. This is good for many reasons, including a much lower risk of infection. She also will be free of her "tails", which she has been making grabs at lately. I think she is most looking forward to a bath! Last night, I wasn't paying attention and she was up to her elbows (with pj's on) in Grace's bath water. The crisis that ensued about removing the wet pajama's and being locked out of the bathroom was so "toddler".
We saw Cora's main bone marrow doctor today who reiterated how lucky we are. When he said "You have no idea what BMT parents go through" I could tell he meant it in a way I will never know about. Cora's counts are still climbing on their own. Her platelets are normal and now I can allow those throw-down tantrums and time outs on the step. Joys of toddlerhood!
Tonight is Cora's benefit cruise. We will leave all three children with our highly reliable babysitter for the evening. How many times do you think I will call and check in? I suspect someone will take my cellphone from me upon boarding the boat. I am looking forward to a night out with Jeff and 140 of our supporters. It is going to be an amazing evening, filled with surprises.
Being locked up in the hospital for so many days has made me appreciate mother nature. Be sure to get outside this weekend and enjoy the change of seasons.
Be CORAgeous

Speechless!

Monday, October 17, 2011 6:12 PM, EDT

written by Heather Dalik

Speechless!

I came home from clinic today all set to have a giant pity party. I am tired of all of this. I am tired of not being able to meet my kids needs. I am tired of Cora demanding to be on my hip every second of the day. I am tired of remembering all the medications and schedules. I am tired of isolation - which I found out today will continue for another four weeks! Oh, and I am just plain ole' tired! BUT, when I pulled down the driveway, I realized I had to postpone my pity party.
Childs Landscape Contractors came today and did amazing things with my garden. I love working in the garden, getting rid of weeds, cleaning up the flowers, the smell of mulch. The garden was one of the things that drew me to this house in the first place. My garden is so large that I work every single weekend from April - October. I also spend mornings out there before Jeff goes to work. It is a labor of love, which I love to hate. I haven't been able to work in the garden since July. I am supposed to be "letting things go" but letting the garden go, meant letting go all of my hard work. The weeds have had a huge party in my absence and I could almost hear them mocking me. Well, today Child's Landscape got back at the weeds and made me the happiest gal on the block! Oh, and get this - the owner donated, yes DONATED, the entire days work. I don't know Harry and didn't get to meet him today. When I meet him, I will tell him how he has the hardest working men I have ever met. They took away more bags of weeds than I could count. They edged, pruned and remulched every single flower bed in our yard. I sat in the house, cried. Our house and garden looks beautiful.

Then, my friend came over to drop off dinner and give me an hour of therapy! The world needs more people like Nicole, and let me tell you, she makes a mean pasta dish that my family loves!
So, my pity party is officially postponed until a later date.

Several of you have asked about Andrew's response to the bone marrow news. He spent the day hugging me and saying "I love you". He is so much less stressed. The moments I see him interact with Cora make my heart swell. He has figured out how to make her laugh and make her happy, which, considering her age, is a huge thing.
Please continue to pray that bacteria Cora has stays in her digestive system and doesn't go to her blood.
Be CORAgeous!

Our Little Miracle!

Friday, October 14, 2011 11:32 AM, EDT

written by Heather Dalik

Our little miracle!

More good news today at clinic. Here is what the report says -
Note: The marrow is normocellular (90%) for age. There is trilineage hematopiesis. The myeloid:erthroid ratio is appropriate (3:1) and both lineages show a full range of maturation. Megakaryocytes are normal in number nad morphology. PAS strain is reviewed. The associated aspirate is aspiculate but shows trilineage hematopoises will full maturation. There is no evidence of dysplasia or increased blasts.
Yeah - right! What does that mean?? One of the tests is for cellularity, how full the marrow is of good cells. Sort of like a toilet tank that has to fill up after being flushed. Sometimes it takes a while to fill. 50% would be expected, 75% good. Cora is 90% filled up! Amazing! Her body is also making white and red blood cells and platelets on its own. This is much better than the typical case on day 42, post transplant. Cora and I had icecream for lunch to celebrate!
I asked Nancy if I could start to work out the constant tightness in my chest, lift the fog of fear, and live again. She agreed that I could, as long as I am always looking over my shoulder. At this point, a cold or the flu would put Cora in the hospital but most likely, not be life threatening. Cora is still house bound for another 6 months and cannot have visitors, especially children. I see this as a small price to pay for the successes we are experiencing.
Don't forget about the cruise next Friday. If you haven't gotten your tickets, there are still a few left.
http://www.becorageous.blogspot.com/
Can't wait to see everyone on Friday!
Be CORAgeous!

95% Boy!

Wednesday, October 12, 2011 1:25 PM, EDT

written by Heather Dalik

95% boy!

Cora is 95% boy! This day is almost as happy as when we found out Andrew was a bone marrow match. I was expecting to find out the % of bone marrow that is Cora vs. Andrew on Friday. I was calm and not nervous when I arrived for our appointment. I have learned when doctors start the sentence with "So," something is coming. When Nancy said "So...", my heart hit my stomach (hold in the the throw up) and I immediately thought - ugh infection! But alas, good news and a few days early. 95% or greater of the marrow in Cora's body is Andrew's. There are two tests that can be done to determine the amount. One gives an exact percentage and the other gives numbers like 90% or greater. 95% of greater could mean 99.9% or 95.5%. No matter, it is safe to say the bone marrow transplant worked. There are still a few test results that haven't come back but all the results point to success.
Cora's blood numbers actually went down today, despite the good news. This is to be expected and made for another long clinic day. She got an infusion of GCSF, which boosts the ANC. She appears to be infection free as of this writing. We are praying that the GCSF boost will help her fight an infection that might be developing. Nancy was quick to remind me that the risks of infection are still very high and will be for the next 6 months.
Did you know today was day 42, post transplant? Today Nancy and I talked about the removal of Cora's central line. It will be replaced with a port, which is under her skin. Depending on how she continues to progress, this will be done at her day 60 bone marrow biopsy. I am already starting to look back and not believe we made it this far.
One more piece of cool/good news. Our family is on the front page of the Gazette today! They featured our family to help with cruise ticket sales. Kids all over Linthicum are going to be fighting to read the Gazette today. Here is the link if you want to read the artice;
http://www.mdgazette.com/content/linthicum-boy%E2%80%99s-marrow-saves-his-young-sister

Grace and Andrew are due home any minute. I can't wait to tell Captain CORAgeous the good news. I hope he jumps into my arms again!
Be CORAgeous!

6 1/2 hour visit!

Monday, October 10, 2011 6:04 PM, EDT

written by Heather Dalik

6 1/2 hour visit!

6 1/2 hour clinic visit! I am pretty sure that is a record breaker. I am so glad to be back home. Our morning started late because none of the elevators at Hopkins were working. We got our bloodwork and initial exam. No wheezing but more docs come to take a listen. Then, we noticed something blue/purple on Cora's arm. Right before our eyes is was spreading, sort of like a bruise but not really. To say I was freaking out, would be an understatement. No one knows what it is. It is growing every time we turn out backs. One doctor, two doctors, three doctors.... Then, one says "get me an alcohol pack". All the others say, it isn't going to come off (I had already done the spit test and it didn't change the coloring.) Yeah - you guessed it, the mystery blue/purple wiped right off. We have NO idea what it was. There isn't anything inside her white shirt, nothing on her hands or mine. One doctor said "who cares what it was. It is gone." Sure, now move onto the breathing.
We were scheduled for a CT scan of her chest, which was very traumatic for both Cora and me. We sang "Skinny Markiny Dinky Dink", which has become "our song" to get us through the scaries. It was about 3:00 by the time we headed back up to our isolation room. We waited there until 4:30 to hear the scan was clear. Breathe a sigh of relief but I am not convinced something isn't brewing. Cora was asleep in her carseat before I pulled out of the parking space.
Every day I thank the stars that Cora won't remember any of this. No memories before age 3, I can hear my child development teacher telling us that. No memories before age 3. I hope this is over by the time she is 3.
The big kids are outside right now and Andrew is trying his hand (or should I say foot) at riding his bike without training wheels. This is a huge step for Captain CORAgeous. Grace is skating beside him cheering him on.
Please continue to pray that Cora's body fights whatever infection might be lurking.
Be CORAgeous!

prayers, please

Sunday, October 9, 2011 9:57 PM, EDT

written by Heather Dalik

Prayers, please

Asthma doesn't scare me. Wheezing doesn't scare me. Bone Marrow transplants almost don't scare me. A day 37 BMT, who is wheezing scares me. Cora was breathing heavy yesterday and wheezing this morning. She didn't respond to her normal medications so off to the ER we went. A hospital visit and a few nebulizer treatments later, we were home and just in time to celebrate birthdays with our family.
All I wanted to do today was get out in our flower garden and work the earth with the big kids. Get back to nature, feel the warm soil and listen to the delight of Grace and Andrew when they find a worm. I learned during pregnancy that kids will always throw your plans off. My new normal includes no plans and I am slowly starting to accept this. I do feel so lucky that a land scaping company has offered its services to clean up my abandoned flower beds. I hope the flowers forgive me for subbing out the work.
Please include Cora in your prayers over the next few days. She is, no doubt, brewing a virus. If my instinct is correct, this will be her first post transplant illness and we have no idea what to expect. She has a clinic appointment tomorrow morning so I will update you as needed.
Please pray!
Be CORAgeous

Birthday Wishes

Friday, October 7, 2011 12:35 PM, EDT

written by Heather Dalik

Birthday Wishes

Cora gave me two birthday presents today. She greeted me this morning with a smile and, prompted by Daddy, the sentence "It's a birthday" or something like that. She clearly knows it is my birthday today and so does her body. Today in clinc we got a wonderful surprise. Her ANC, those neutrophils which we are always watching, were around 500 on Wed. Nurse Nancy told me we would have to do a GCSF infusion at our appointment on Fri. Much to everyone's shock, Cora's ANC went to over 2000 on its own! I asked to have her blood re-drawn just to sure!! We were happily on our way two hours later - a short clinic visit and another present because who really wants to spend their birthday at Hopkins.
One of the birthday privildges in our house is being able to pick all the meals. I didn't eat breakfast, although Grace offered to make me a special breakfast. Lunch - I chose Doritos (don't ask WHY they are in the house) Dinner will be Chipolte salad that I am currently addicted to. For all those that are concerned, I am starting to eat again. I will have the weight back on in no time!
Just to mention, tomorrow is the Kinder Farm Park Fall Festival. The park is located off Jumpers Hole Rd in Severna Park. My inventory and Be CORAgeous wear will be there from 10-4. I will be there for some part of the day. This is an amazingly fun kids festival and not terribly expensive. I hear the weather is going to be perfect. Hope to see you there!
Be CORAgeous!

Bubbles!

As soon as Andrew walked in the door, he jumped on me (yes, right into my arms)  "Did it work, did it work?"  Me - "Did what work?"  Him - "The bone marrow, the bone marrow, Mommy the bone marrow, did it work?" 

He has been so stoic this whole time.  I had no idea he was so worried about his sister.  I had to explain to him that we will have a baseline number in about a week.  My birthday is Friday and I said a little prayer that there would be happy birthday news when we go to clinic on Fri.  I know it is too early but it doesn't hurt to wish.  Today, I am also grateful that I have another year until my next milestone.  I am pretty sure that turning 40 while going through all this would be the straw that broke the camels back. 

Cora spent the afternoon blowing bubbles with Mommom.  She pushed her dolly around outside and enjoyed the beautiful weather, while sporting her "mouse" mask.

I took Grace to the mall for some fall clothes.  Seriously, I have no idea how my mother got through the clothing years and shopping with me.  When I got to the mall, suddenly I was the most tired I have ever been and couldn't wait to get out of there.  My sweet daughter had to look at every single piece of clothing in her favorite store.  I vowed to work on my mall attitude, but not until next month.  We did come home with one (just one after an hour!  Do you have any idea how much shopping I can get done in an hour!) outfit that we could agree on.  Next month we will shop for a winter coat and I will have a better attitude. 
I will update you on the bone marrow baseline as soon as we get the test results.  Please pray that Cora's body continues to fight this digestive bacteria. 

I know I shouldn't share this but here is some writing I found of Grace's.  The list is called "Things about Cora".  The last item reads "She is home, happy and herself again.  And now the family is back together and we are happy."

I thought I was tired...

I thought I was tired before but WOW!  This brings a whole new meaning to tired.  I lay in bed and wait and wait and wait some more - no sleep.  You see, in the apartment there were some people that lived upstairs.  They kept me awake night after night.  I guess my body thinks we should be awake.  Maybe the change to cool weather, my amazing duvet cover and exhaustion will make a difference tonight. 
Cora is so happy to be at home.  While it is really tough to occupy her, the big kids are being so good with her.  She won't let anyone, not Jeff, Grace, Andrew, even poor Jersey, out of her sight.  When someone leaves the room, we are met with a "MOMMY!" which sounds like it comes out of bullhorn.  She will adjust - right?? 

Today was a much shorter clinic visit, which I am so grateful for.  Going to clinic evokes the same exhaustion as a day at Disney World.  Cora's counts are still up and she appears to be making platelets on her own.  One day I will remember to get her numbers so I can tell you what they are.  Her platelets are nearing the "normal" range.  We took her off the GCSF, one of the meds used to boost neutrophil (ANC) counts.  The last time we did that, she tanked and had to go back on.  This week we did it again and she is holding her own.  Yeah!  One more success. 

Couple mini fundraisers that I would love to mention or offer shameless self promotion - you decide which it is.

This weekend SPRFC, the gym that I have been a member of for 20 years will have Be CORAgeous bracelets and t-shirts for sale during all group fitness classes. I hope to make it to my usual Saturday morning group power class. 

Sunday, I will be selling at Oktober Fest in West Annapolis.  That is an amazing german festival.  I will spend the day selling hairbows and eating 'kraut!  The festival runs from 10-5.  To get to the festival, take any left turn off Bestgate Rd, before you hit down town Annapolis.  I will also have Be CORAgeous gear with me at the festival. 

Be CORAgeous!