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Claire’s Story

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Or contact David Cutler (Claire’s uncle) at dcutler@marcusmillichap.com



When Claire was about 6 weeks old we had to take her to the ER because she was having a hard time breathing and was looking very pale. When she got there, Claire "coded" and doctors frantically tried to figure out what was wrong. First, they thought she had a bad heart, then internal bleeding, finally, they realized that her problem was her bone marrow/blood. She had very little of it. A couple of hospitals and ambulance rides later we ended up in the infant ICU at Children’s Hospital. After many tests and several transfusions they diagnosed Claire with a very rare condition called Diamond Blackfan Anemia (DBA). Basically, she doesn't create her own red blood cells. So a little Hematology 101. Basically your bone marrow creates 3 types of blood cells. -Platelets-which cause the blood to clot when you get cut. -White blood cells-which help you fight disease -Red Blood Cells (RBC's) which carry oxygen to the body. The way we measure the amount of blood in Claires system is to get a Hematocrit count. A healthy persons Hematocrit level is about 40-45. A patient undergoing chemo and radiation, and therefore has a very low Hematocrit level, could have a level in the teens. When we initially took Claire to the hospital, her Hematocrit was at 6. The doctors are amazed she survived. Typically, the doctors will transfuse Claire when her Hematocrit drops as low as 25. Claires Platelets are fine. Her White Blood Count fluctuates more than it should and is typically lower than normal (a condition called neutropenia). This is the reason we try to minimize her risk of exposure to germs or disease, (thus her (and Debbies) infrequent church attendance). There are two different treatments for DBA. 1)Chronic (ongoing) transfusion therapy-a patient gets transfusions once a month or as dictated by her blood levels, or 2) steroid treatment where the patient is given prednisone in hopes that that will increase/initiate RBC production. Most people use a combination of both. They take the steroid to augment their natural blood production, thereby increasing the amount of time between transfusions; some respond to the steroid well enough that they only have transfusions every few years or more. We have tried two rounds of steroids but Claire didn't respond to them at all. So for now Claire is transfusion dependent. Although Transfusion therapy can be a viable longer term, there are other side effects that make it quite difficult. As people produce RBC's they recycle iron in their system. Since Claire doesn't produce RBC's the iron builds up. We now monitor Claire’s Ferritin level which measures the amount of iron in her system. When that level gets consistently over 1000 we will start a procedure called chelation. Chelation is a daily injection/IV of a chemical that binds itself to the iron in your system and removes it. This process takes quite a bit of time, between 9-15 hours, so is usually done while the patient sleeps. Claire also has had a couple reactions to her transfusions recently. The doctors are not sure what is causing the reactions, but they are taking steps to ensure that those incidents are minimized. In August, Claire underwent an MRI to help understand some developmental delays her doctors and therapists were noticing. They discovered the myelin pattern development in her brain was delayed. Myelin is the sheath that covers the nerves in the brain and spine. Much like insulation on an electrical wire, the myelin improves the signal as it travels down the nerve. This myelin facilitates the brains ability to communicate and control the rest of the body. The good news is the judging by recent progress Claire has made, we think her development, although delayed, is improving. That is a good sign. The biggest challenge with Claire is dealing with the uncertainty. The uncertainty of her diagnosis. The uncertainty of what the treatment would be like. The uncertainty of what the future holds. But we are continually and tremendously grateful for the wonderful joy and happiness that Claire brings to us daily and the outpouring of love and support we continuously receive from family and friends.

Latest Journal Update

Lessons Claire has taught me.

I don't post journal entries very often but since today would be Claire's 9th Birthday I thought I would share some memories and lessons from Claire.  -Mike

1.      Don’t stick your nose where it doesn’t belong unless you want to get smacked.

Sam and Claire had this game they would play.  Sam would get his face right next to Claires and she would smack him.  Sam would act hurt, Claire would laugh.  It wasn’t a very complicated game, obviously, but they both seemed to enjoy it. We would always tell Sam that if he didn’t want to get his face whacked, he should keep it out of Claires reach. But that just wasn’t how the game was played.

2.      Life is short, just eat the marshmallows, pick flowers and feed ducks.

One of Claire’s favorite snacks was Lucky Charms cereal.  We would give her a big bowl of the cereal  (without milk) and Claire would pick  out and eat just the marshmallow treats.  I don’t think she even realized that the other stuff in there was also food.

 When Claire was at home, her nurses would take her on a daily walk (weather and health permitting) down to the Sammamish Beach Club beach to feed/chase the ducks.  She would always bring back a tiny bouquet of flowers for Debbie that she had stopped to pick along the way.  Debbie had a collection of colorful tiny glass vials that were always filled with tiny flowers that Claire brought back from her walks.

3.      Take advantage of every opportunity to give hugs.

Every day when I would come home, I was greeted by a screaming “Daddy” followed by a huge hug from a very excited Claire.  She was 10 feet of Happy in a 3 foot body.  Always the highlight of my day.

4.      Pink goes with EVERYTHING.

Early in Claire’s life, when she was still dependent on blood transfusions, Claire’s coloring would progressively grow paler as she grew closer to needing a transfusion.  Some colors that looked good on her when she had recently “tanked up” (received a transfusion) would not look good on her as she lost some of the rosiness that accompanied the transfusion.  Likewise, colors that complimented her paler complexion didn’t look as good immediately following a transfusion.  Pink looked cute on her regardless of where she was between transfusions and that is how pink became Claire’s signature color.

5.      When it is time to fight, fight with all that you have.  But when the struggle is over,never hold a grudge.

Whether it was time for a shot, or to access her port, or anything unpleasant, Claire would fight, struggle and squirm like there was no tomorrow. I have seen Claire fight off nurses, technicians and even Debbie and I –often at the same time- when she knew something unpleasant was coming.  Sometimes she was successful, sometimes not.  Regardless, once the struggle was over, she immediately would give knuckles, hugs  and kisses to those who were unfortunate enough to tangle with "Claire-zilla". I like to imagine that she thought to herself, “why are these people sweating so much?”

6.      Never underestimate the power of suggestion/if you want someone to do something for you, let them think it is their idea.

When Claire wanted to watch a movie, she would say, “movie??”.  Which would prompt the response, ”Claire, do you want to watch a movie?” Claire would reply, “Okay”.  Like it was your idea all along. As an adult,I like to have a sense of control, but with Claire, there was never a questionas to who was in charge.  It was Claire’s world and we were fooling  ourselves if we thought otherwise.

7.      It is ok to peek during a prayer as long as yougive a loud “AMEN” at the end.

I am not sure how doctrinally sound this one is, but Claire loved to look around during meal and evening prayers. But she would always give a loud, “AMEN!”  at the end. I have to think the enthusiasm of the AMEN more than compensated for her mischievous peeking.

8.      Surround yourself with things/people that you love.

The nurses at Childrens Hospital would often get a kick out of all the toys that Claire would keep in her bed at bedtime.  It certainly didn’t look comfortable but she knew exactly which toys were where and would certainly let you hear about it if you were foolish enough to try to remove one. If one fell off the bed, no one –parents, nurses, nobody-had peace until it was found and returned to its proper place.

 No discussion about Claire would be complete without mentioning her“minkies”.  These were tiny square blankets that Claire's Grammy lovingly made for her.  She had many, many of them in a variety of colors.  Every night of her life Claire would fall asleep with a minkie in hand, noisily sucking her thumb as she unconsciously would slide the satin trim of the minkie through her hand and across her face.  One of Braeden’s favorite videos is a clip we took of Claire as she snuck into a room with some recently folded laundry, including a stack of minkies fresh from the dryer. She grabbed the entire stack, held them high over her head and ran screaming with glee as if she had just found the lost city of Atlantis…and it was made entirely of candy.

9.      No whining-

If anyone ever had cause to whine or complain, it was Claire.  But although she suffered severe challenges and difficulties, she never once complained or whined.  People often say, "Man up" or "Cowboy up" to get people to stop whining.  I think "Claire up" should be added to that list.  "Claire up" and stop whining.

10.  If you are playing Hide and Seek and you cannot see who “It” is, then you must be winning.

Again, this one might not be technically accurate.  One of Braedens favorite stories is the time he and Claire were chasing each other around the house and he came into a room to find Claire “hidden” under an ottoman. Unfortunately, Claire has just stuck her head under the ottoman and the rest of her body was very much visible on the floor in the middle of the room.  Braeden laughed, Claire sat up and said, “Oh, Hi Braeden.”  In a  fancy-to-see-you-here tone.

11.  Find joy in the little things.

Although Children’s Hospital is a wonderful facility and we love and cherish the relationships developed there, Debbie and I grew to dread all the times we would have to take Claire in for whatever reason.  Claire, however, would always make us stop and pet the animal statues that we passed whenever we went to the Hem/Oncunit.  As you walked from the entrance to the elevators at Childrens, you would pass statues of a Giraffe, Elephant, Zebra and the Hippo in the fountain.  No matter how rushed we were to get to the Hospital, Claire always made us stop and say hello to the animals as we went in for yet another stay.

12.  Never underestimate the power of a redhead.

It became somewhat comical when a doctor, nurse or someone who wasn’t familiar with Claire would pre- judge her based on her size/condition.  Whether it was how much medication it would take to sedate her for a surgery or how many technicians it would take to hold her down for an x-ray, it was always fun to watch them drastically underestimate the force that was Claire. One of my favorite movies is Jaws, and I know exactly how Chief Brody felt when, after having seen the killer shark for the first time, he told Quint,“You’re  gonna need a bigger boat!”  Not to compare Claire to a shark… But she was so often misjudged and would force people to re-calibrate their expectations.    

13.  It is always ok to dance.

This might seem a bit weird coming from me.  I have been told that watching me dance islike watching someone flail about as if they are stuck in a small car with a swarm of bees.  But Claire would always dance when asked  Saying “Claire, Shake your bun-bun?” is all it would take.

14.  Don’t be afraid to say what you want.

Claire was well known at Childrens for making her opinions known.  Whether she wanted a specific toy, movie or anything at all, there was never a question as to what her opinion was.  Disagree at your own peril.

Every night when I would put Claire to bed, we would say our “Princess Claire stories”.  These stories varied greatly but they all had three vital components.

i.     They had to begin with “Once upon a time there was a beautiful Princess and her name was Claire”

ii.     Princess Claire had to have beautiful RED hair.

iii.     Everyone had to LOVE her and be happy.

If any of those three components varied; if Princess Claire had BLUE hair, or if some of the people were sad or upset, Claire would point out that discrepancy and we would have to start over.  After that intro, the story could go anywhere, but changing the beginning was not an option.

15.  No Sad, Be Happy

I cannot overstate this one enough. Claire had zero tolerance for people who were sad, angry or upset.  Why would people choose to be sad when they could simply be happy?  In the real world, it is easy to discount that as a gross oversimplification, I guess, but in Claire’s world, it really was Just. That. Simple.

Happy Birthday Claire!  You are missed and loved beyond words.

-Daddy

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Comentarios

20 Comentarios

Tami Cook
By
This story starts with an amazing dad who forever loves his Princess Claire. She will forever fill your heart with those Once upon a time stories you shared. She is a true Princess!!!
Joni Cowden
By Joni Cowden
Even though she is happy in Heaven now, I am sure she is embracing you all right now on her birthday. Feel her love and be comforted. Rejoicing with her. Your writing is so very heartfelt and a tribute to her sweet life. Thank you for sharing this.
Jill Hoopes
By Jill
This is a piece of art, Mike! Thanks for sharing. She's one amazing princess.
Jill Hoopes
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1 person hearted this
Herb Cutler
By Herb Cutler & Claire's Papa
Mike, thanks for the wonderful post. Your reflections truly represented Claire's spunk and determination. She was the ruling "Princess" and everyone was at her beck and call. You were a wonderful Dad to her and I know you loved her very much.
Amy Melick
By
Claire taught us all many things but so did her wonderful dad and mom. Had some Taco Bell in your honor Mike and some Carmel Bugles in Deb's honor last week. The baggie of Lucky Charms marshmallows on Claire's grave gave me a good chuckle. I will pet the animals for Claire on Tuesday.
Amy
Becky Butcher
By Becky Butcher
Thank you for sharing these tender lessons Mike.
Marilyn Haymond
By
How tender, Mike, & expressed with such love. Thank you so much for sharing. It gave me insight to the little special Claire rituals that became such a part of the family's life together.
Steffeny Wood
By Steffeny Wood
I bet she is smiling down on her daddy today. It's always about the simple things in life and she taught that. Great reminders, thanks for sharing Mike!
Lezlee Becker
By
I was not fortunate enough to get to meet Claire in person, but feel very happy to get to know her through your posts. You were certainly fortunate to have been given her for her short time here, just as she was to have you. Thank you for sharing your heart with us. <3

Love to you all,
Neeci Matlock Becker
your cousin
Steve Balkman
By Steve Balkman
Thanks Mike - Your thoughts bring back fun memories of your wonderful daughter!