Wednesday on Saturday

Wednesday Addams… a classic television character was the recent choice of a party we were invited to with an Addams Family Theme.

Wednesday, “the dreaded day” seemed fitting in many ways for Kelsey.  The mention of the weekday sends a jolt of fear and frustration to Kelsey each week.  We were surprised that she decided to dress the part, but being Wednesday “the worst day of the week” on Saturday made her smile.

Kelsey said that this was the first and probably last Wednesday she would enjoy talking about.

Wednesday on Wednesday does not have the same sentiment, but at least she found a way to smile for Wednesday (on Saturday).

Doctor In Training

When you have a child with a rare illness, specialists are kind and curious.  Pediatricians are cautious.  Those who know hug a little tighter and they mean it.

When Kelsey was in isolation and quarantine, a yellow stethoscope was left behind as doctors had to utilize this specific tool each time they came in to check her and assess her progress.  She took it home in December of 2011 from the isolated room as a “souvenir” of sorts.

I have considered getting rid of it as it reminds me of a difficult time in our journey and there are also days that I look at it more as a yellow badge of courage for my brave girl.

This weekend, she checked us all out with the souvenir and made us call her “Doc” while doing so. It was joyful.

She wore the tool with pride and assumed the role of a doctor with grace.

During my check up, she spoke about her future.  As I remain hopeful, I also fear the future and the unknown.  When your six year old tells you that one day soon, she will consider being a doctor, the future looks brighter.

You smile and ask her why.

She responds, “Well that way, one day I can help find a cure while I’m at work.  Then, I’ll take some home and give a little bit of it to myself.”

While I pray and hope that we work to assure that a cure is found before her white coat ceremony is possible, the sentiment sure made me smile.

To dreamers and believers everywhere, I hope your future looks bright this morning.

A New View in Review – 2017

Kelsey’s Kaleidoscope, Inc,: A New View for PAN

This year, we celebrate your generosity and appreciate your willingness to learn more about the rare disease we aim to cure.   We hope to continue our efforts in 2018 to raise money in support of research efforts on an international scale.


AMAZON SMILE LINK

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Rosemary Connors NBC10@Issue

Kelsey’s Kaleidoscope, Inc.: A New View for PAN was featured on NBC10@Issue with Rosemary Connors to raise awareness and share information about the disease we aim to cure and our fundraising efforts to date.


Second Annual Gala

Dr. Chip Chambers explained the terror or the rare disease dada2, which manifests as PAN for Kelsey, at our Second Annual Gala this November.   Dr. Chambers is the former Chief of Endocrine Surgery at Vanderbilt University Medical Center in Nashville, Tennessee. He continues to hold his clinical faculty appointment at Vanderbilt, and he operates and teaches residents at the Veterans Affairs Medical Center. Dr. Chambers’ two children were diagnosed with DADA2 in March 2014, just one month after the first articles describing the disease were published in the New England Journal of Medicine. He has spent the last two years making connections among clinicians treating patients with DADA2 all over the world, as well as patients, their families, and researchers studying the enzyme.

During his informative and descriptive speech, he asked the question of all in attendace: “How would you feel if your five year old was having strokes and the doctors cannot tell you why or tell you what to expect next?”

Having lived through that pain, I can tell you the answer.  The answer is fear of the unknown, fear of what you will wake up to every morning, and fear that you are not and have not done enough as a parent.

For those of you who attended our Gala, thank you.  No parent wants to live in fear or to feel helpless for their child.  Your support, generosity, and love helps spread feelings of hopeful over helpless.

We surpassed our efforts from last year and raised just over $25,000 that evening.  We will continue to advocate and research in 2018.


Dr. Kate Rubins

Kelsey was able to meet Dr. Kate Rubins, the first astronaut to sequence DNA in space this April.  Kelsey was given an opportunity to speak with Kate and ask her questions one-on-one as a dada2 patient through the NIH.

Dr. Rubins was poised, patient, wise, and a true role model.  I would have hand picked Dr. Rubins for my children to meet.  She, however, picked us.


Catching for a Cure

The Britto Agency organized a softball tournament on behalf of Kelsey’s Kaleidoscope, Inc.: A New View for PAN this September.

Twelve teams gathered at Pennypack Park on the Delaware to show off their softball skills and get the tournament win.

The Britto Agency helped us raise over $9000 during the Catching for a Cure event.  We are forever grateful to all of you who played a role, large or small.

We thank you for your commitment, your generosity, and your support!

 



St. Paddy’s Day

On March 17, 2017 we hosted a St. Paddy’s Day Happy Hour to fundraise for our cause.  Our collective efforts  raised $4,000 on St. Paddy’s Day.  Sláinte!


What is DADA2?

To read more about the gene deficiency that manifests as PAN for Kelsey, please click on the link below to learn more.

http://www.dada2.org/learn

Hope & the Rookie Rockette

There is something fantastic about being in NYC during the holiday season.  It is a feeling you get coupled with a sheer sense of adventure and excitement that seems electic.

Walking through the city and Rockefeller Center with my family would have been special in and of itself.  However, we connected with The Garden of Hope.  They read aboutKelsey and her disease, and they offered us an extra special treat following our show.

The curtain barely closed as an usher arrived at our row to gather Kelsey, her brother, and her cousin.  She led us straight backstage through the hustle and bustle of the crowd.  Awaiting our arrival were two Rockettes.  One was a veteran in her seventeenth year and one was a rookie.  Both were beautiful, kind, and genuine.  While they dazzled us on stage during the show, they certainly made Kelsey feel like a star.

Their grace, patience, and kindness warmed my heart.

Thank you to The Garden of Hope for spreading kindess and helping my little girl feel special.

Enjoy  a video summation of Kelsey’s experience below.

 

Balance

It can be difficult to slow down during the hustle and bustle of the holiday season.  However, I find that is what we need right now more than ever.

We try to mix in holiday fun, quiet reflection, and a sense of gratitude for all that we do have in our lives every chance we have to do so.

At times the balancing act of work, play, and family can be a challenge for us all.

I think back to this week six years ago when I held a febrile child void of energy in my arms.  She was nine months old and she was in need of serious medical attention.  Docs convinved me it was teething.  I was easily persuaded because I wanted to be.  I wanted balance and I wanted to believe.

Standing in the doctor’s office demanding more, demanding testing, demanding results was not easy.   It took bravery and perserverance.

The sixteen days we endured in the hospital following that moment were even harder.

Finding courage, finding strength,  and finding balance in all things has taken effort then and now.

Kelsey’s disease helps us evaluate priorities, give thanks for blessings, and pray for balance in all facets of life.  We pray for answers and we pray that we connect families and help others so that balance can be found.

I hope this holiday season helps you find comfort, balance, and love.

Dear Santa

While going about our bedtime routine, Kelsey asked me what was on my Christmas list.

I chuckled and said that the health of my family and friends were the only things I would write on mine.  That is the truth.

She giggled and said, “Is that more important than hot new toys?”  Then she thought about it for a minute and said, “I guess it is.  Is it ok for kids to want the hot new toys, though?” as if she was speaking a ToysRUs commercial!

“Of course it is.  Adults want children to have the hot new toys that make them smile,” I replied.

After another few mintues and a conversation change, she brought me paper and a pen.  On it, she wrote:

Dear Santa,

My mom wants health for her family and friends.  Maybe you could take away Mr. Needle, too?

Love,

Kelsey


She said all I needed to say.  Santa, now you officially know my Christmas wish.

Helpless to Hopeful

Sometimes I sit and stare at Kelsey in amazement.  I am continuously amazed by her beauty, her wisdom, and her poise.  More often than not, it is because aside from being truly dazzled by the fact that she is my daughter, I am in amazement that she could possibly have this hidden condition that so few people can truly understand.

Dr. Chip Chambers helped explained the terror or the rare disease dada2, which manifests as PAN for Kelsey, at our Second Annual Gala.   I will share his speech in the near future, but one of the sentiments he shared has particularly stuck with me.

How would you feel when your five year old is having strokes and the doctors cannot tell you why or tell you what to expect next?

Having lived through that pain while my daughter was three and living that question on a daily basis, I can tell you the answer.  The answer is fear of the unknown, fear of what you will wake up to every morning, and fear that you are not and have not done enough as a parent.

For those of you who attended our Gala, thank you from the bottom of my heart.  No parent wants to live in fear or to feel helpless for their child.  Your support, generosity, and love helps my family feel more hopeful than helpless.

We doubled our efforts from last year and will continue to fundraise, speak out, and help anyone else who finds themselves affected by PAN and dada2.

Our Third Annual Gala will be even bigger and better.  Save the date, November 23, 2018.

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Selling Kindness and Giving Back

This evening, soon after injecting the second medication of the day, we will smile and walk around a local “market.”   This market is a school project for future business entrepreneurs to reveal a business plan and “sell” a variety of products to reflect their business model.  It is a fabulous learning experience.  However, there is much more to this market for my family.

About a month ago, one of Kelsey’s teacher reached out to me regarding this event.  She wanted to let me know that her ten-year-old son would be participating in this event and donating ALL of his proceeds to Kelsey’s Kaleidoscope, Inc.  Maybe it is not the best business model, but it certainly a child who understands compassion, charity, and community.

Touched.  Grateful.  Overwhelmed by kindness.

The tumultuous nature of the past few months has also created a natural break in fundraising.  However, my heart melts to know that a ten year old young man did not stop thinking.  This incredibly generous ten-year-old boy has never even met Kelsey.

To Kelsey’s teacher for sharing Kelsey’s illness with her family and raising a young man who would think more of someone else than of himself, thank you.  To a young entrepreneur who took it upon himself to bring a bit of sunshine into the sunshine of our lives, thank you.  If you happen to stop by the event this evening and inquire about Kelsey’s Kaleidoscope, Inc, thank you.  It is the support and the spirit-lift from those around us that keeps us strong even when we feel that we are hanging on by a thread.

The sleepless nights, the relationship stress, the avoidance of public settings and birthday parties due to the vast array of germs, and everything else good and bad that January has been comes to an end this morning as the sun rises to February.

This month looks hopeful and bright already.

Thank you, February and thank you to an amazing ten-year-old and his family for sharing the love…

Five Years Ago Today, Another Flare to our Dismay

This week life seemed to be back to normal for Kelsey.  Her spark seemed to reignite and her happiness in all things was evident everywhere we looked.  It was glorious to see the pain fading away from her face.

When Santa came down the street equipped with both candy canes and dog biscuits, she jumped up and down squealing, “This is the best day!”  She meant it.  It had been months since that glow lasted an entire day.

It was short-lived.  She woke up with a fever in the morning and the cycle began once more.  It was not alarming high and her joints seemed to be unaffected.  She became hysterical at the notion of a visit to the doctor.  I could not blame her.  I rubbed her back calmly, wanting to scream at the top of my lungs.

At first, we hoped this fever signaled your typical ear ache or throat pain, the kind that all kids get at one point or another.  We do our best to cover all bases before we explore a potential flare.  It is becoming exhausting.

Sunday morning presents a certain struggle for medical care, but we wanted to rule out the common ailments before we spent another day in an ER.  

After relaying all necessary information to the doctor (a bit tough to do at this point on Kelsey’s behalf), he examined her and noticed no redness or inflammation anywhere.  Kelsey’s heart raced and she wondered why that pink medicine was not prescribed.  I squeezed her tightly because I was not sure what else to do.  It is rare that I sit at a doctor’s office and HOPE to hear, “yes, there is an infection.”  Yet, in that moment I realized those were precisely the words I wished to hear.

Instead, I came home with a heavy heart and worry that goes beyond words.  There is so little known for PAN right now that when the regular is ruled out, the scary stuff creeps in.  What was supposed to be a fun-filled and festive day in Philadelphia turned into one where I wanted to just crawl back into bed.

For Kelsey’s sake, that is not an option.  

I find strength and start making phone calls.  The dialogue that follows is too routine theses days.  I sit with my stethoscope, waiting and monitoring.  Hours pass.  I try to stay hopeful and calm.  

Recently, that has been increasing challenging to do.

Though the fever went away, we once again had a hobbling child unable to stand straight and tall.  She attempted to fake it and fool us out of fear, but her tiny body could hide no more.

To the ER we went and waited again.  There we sat in an unbelievably crowded room only two days shy of the five year anniversary of the first time we walked through those doors.  It is almost unbelievable.

Today marks five years to the day.  I sit speechless.  We realize that treatment is not working once more according to plan.  That is far from comforting.  

We await results.  We await blood work.  We await an emergency follow up at the National Institute of Health.

While we wait, we call and look for research opportunities and seek help from anyone who can lead us to answers.  Five years from now, it is my family’s mission that we are writing a much happier tale.

We sleep a little less, pray a little more, and appreciate the help and support of so many.

Every day deserves to be “the best day” for every child.

The Warm Sandwich

It was December 14, 2011 around 2:30 P.M. when we first arrived to the E.R.  My heart racing along with my mind.  The moment it hit me was when we placed Kelsey on the scale at registration and started to talk about the past few weeks.  Her hospital bracelet acknowledged that this was truly happening.  

I realized how desperate we were for medical attention and how I truly should have seen this sooner.

From that moment, we were treated with respect, care, and attention.  The doctors were compassionate and concerned.

By the time the evening shift change occurred, we were impatiently awaiting an answer that no one was able to provide.  We had likely been there for seven hours without food or a glass of water.  I was still nursing my ten month old baby girl so she did not seem to notice that her father and I denied ourselves nourishment because we were completely numb inside.  Nursing seemed Kelsey’s only comfort in the world beside my arms throughout the past few weeks.   I think it was my solace, too.

Later on in the evening, we met a husband and wife team of emergency room doctors.  I will never forget their eyes of concern or the sandwiches they brought Brendan and I around 11 PM.  According to the compassionate female doctor, whose name I do not recall five years later, “you really should eat something.”   Her warm brown gaze met mine.  Whether she was a mother herself, I do not know.  She certainly had a nurturing and motherly sense about her regardless. 

Even though I had not an inkling of hunger, that sandwich was necessary.  For it was a source of nutrition, but even more than that, it was a sign that we were in the right place.  

Even if it was a warm turkey and cheese sandwich at 11 PM, it was exactly what I needed.