Five Months – from Kelsey

“It’s been 5 months since COVID started and it is not exciting. I am thinking about school. It is stressful and some people aren’t even going to school. What makes it stressful is that if someone goes back to school, they have to wear a mask. Then what about kids like me? Will the kids like me that stay home learn as much? I want to learn a lot. I hope we all learn a lot.

If you think about it, the normal routine or the same routine would be nice. Should we all do the remote learning that we have been doing?

I feel like when COVID is over, everyone is going to get in their cars and go to the mall or movies. I wish that could happen soon. Now and forever, I pray that everyone in the world is ok and that they are all ok at the end of COVID.”

Kelsey, age 9. #bebrave

Difficult Decisions

How do you explain the importance of protecting your immunocompromised child to the sibling of an immunocompromised child? This question is one we are not answering well in July 2020.

In March, April, and May when the quarantine restricted all of us, the discussions about what we were missing were easier than they are today. Now, we are all able to make decisions and choices to our own comfort level as Disneyland, amusement parks, and other public areas open with limitations and restrictions. We learned that a slice of pizza could have led to transmission over the weekend. We are scared.

As comfort levels adjust and invitations have come our family’s way, we find that difficult decisions and choices are ahead. These decisions are harder than we anticipated they would be. Multiple impending imaging studies and pathology appointments remind us of our why as a family unit. However, we are also trying to help an eleven-year-old understand. Receiving invitations to inside gatherings and parties should be exciting. Instead, we have to help him understand our fears and our need to protect the most vulnerable member of our family. Anger and sadness have followed. We understand and empathize, but that does not make it any easier for us or allow us to waiver from our choices.

We second guess our decisions over the past few weeks as a resurgence in cases appears around us. We fear the weeks ahead and what is to come. We pray that our fears are incorrect. However, we cannot take that chance.

Our hearts are heavy in mid-July for the difficult decisions that surround us as a family and the number of cases rising. Who would have thought that normalcy and its return would have been so difficult? We certainly did not see this coming. We bravely walk together and openly discuss our fears and family concerns to make the best decisions for us.

Be brave and make the best decisions for you. Stay healthy and mask up! If we all do our part, perhaps the road to return will not be as long or as difficult.

Comfort and Love

As our time home continues and summer looks different, we continue to clean and move through memories. Cleaning Kelsey’s stuffed animals was a journey that took an unexpected turn. She is quite good at cleaning and holding onto memories without specific belongings.

However, when it came to her stuffed animals, she surprised us. We started small by donating a few items when the COVID shutdown occurred. Slowly but surely, we began to clean out other belongings and personal items. We recently came to a small corner that seemed like any other.

This group of items appeared like her other favorites. Instead, we learned that each one held a memory. The first was a monkey bear. This tiny blanket/rattle combination has become a new favorite. We discovered that it was because it has been keeping her calm since she was a baby. Next was Violet, the singing LeapFrog toy that she snuggled with as a toddler. As Kelsey sat through much of her toddler time because she had trouble moving, this singing purple bear occupied her time.

Then came the teddy bears. “Remember this one,” she said as Brown Bear surfaced with the hospital tag still on his right arm. “Remember how I missed Brown Bear day in Kindergarten so this bear kept me company instead because he’s a brown bear.” It was stated matter of factly with a hug. “I love this one,” she concluded.

We more than remember that day…

With each passing bear or stuffy, a memory of Kelsey’s journey was shared. Instead of looking at these memories or moments with sadness, they were approached with comfort and love.

Be Brave. Approach your moments and memories with comfort and love today.

BRAVE Redefined in COVID 19

This weekend, a BRAVE nurse had the idea to utilize BRAVE bands in her day-to-day work on the frontlines.  After she picked up the bands, Kelsey brainstormed the many other BRAVE men and women who work on the front lines daily.

We counted the amount of BRAVE bands we had remaining, and though it was a mix of colors and orders, we had exactly 100.  Kelsey decided that she wanted to donate BRAVE bands to those front line workers.  After two calls to ShopRite, the first deliveries are set for today by President, Mary Wagner.

#ThisisHowIBRAVE

Thank you to all who work and serve others!

Kindness for a Cure

Random Acts of Kindness followed a week dedicated to spreading cheer and joy at Kelsey’s School.  Then we were humbled with gratitude and our community’s support for Kindness for a Cure.  Kelsey lives in a community where she and another student suffer from a rare disease.  This year, one dedicated secretary (with the support of all around her) committed to supporting our local non-profit organizations for a school-wide fundraiser.  Wow.  The letter that went home is below:

One School’s Kindness for a Cure

February 10, 2020

Dear Parents/Guardians,

In coordination with the Great Kindness Challenge,  students, staff, and families raise funds for special causes each year. This year, our school will raise funds and awareness for two rare conditions that affect two very special students in our district. We will donate all the funds collected to the Shwachman Diamond Syndrome Foundation and Kelsey’s Kaleidoscope, Inc. Each organization will receive 50% of the funds.

To learn more, click on the links below:

Kelsey’s Kaleidoscope, Inc.

Shwachman Diamond Syndrome Foundation

Many of you may not be aware of these conditions and how they impact two local families, so we wanted to bring more awareness and attention to the rare conditions affecting Kelsey, a third-grade student, and Maggie, a fourth-grade student in our district.

We ask that families who want to donate coins, have their child bring them in a disposable container or baggie. Anyone who wants to donate via check, can do so by sending in a check written to either organization listed above. Donations can also be made online using the links above.

Our School is proud of the awareness we bring to our families and hope this fundraising effort can assist in bringing more attention and a possible cure to Kelsey, Maggie and all of those affected by these illnesses.

Thank you!  (All!)

We are blessed and grateful for this initiative of kindness.

 

#RareAsOne

Mark Zuckerberg, Facebook Founder, and his wife, Dr. Priscilla Chan, committed to the challenge, “Can we cure all diseases in our children’s lifetime?”  Daunting.  Amazing.  Fantastic idea!  Can they do it?  Here is to #hope…

On Monday, the couple announced one step in the right direction to conquer the challenge set forth in 2016.  They will offer grants to 30 recipients to advance research, training, and awareness.  Of the 30 selected, the dada2 foundation is one of the recipients to benefit from this large grant along with other resources over a two-year time period.

Wow.  We only hope our small community of dada2 patients grows and the resources lead to a cure for our girl and the many others we know with dada2.  Here is to hope and generosity in 2020…

#RareAsOne

Nine Lessons in Nine Years

Kelsey soon celebrates nine years of life.  Each of her nine years has been unique.  She has endured so many inquiries, tests, and circumstances, many of them we as adults may not have experienced.  To put it another way, it has been a journey.   Each year of the journey has taught us something new.  We are grateful for each year and the lessons we learned.

Year One taught us resilience.  We spent 16 days hospitalized and torn apart as a family, each in pain with worry, concern, and lacking a diagnosis.  By the first birthday celebration, we bounced back ready to learn more and find an answer.  Each one of us was forever changed by the experiences that we can never fully explain.

Year Two taught us to advocate.  In year one, we listened to poor medical advice and waited on others to seek solutions.  Year one was painful.  Year Two was the year of advocating.  Remember to be your own advocate and advocate for your children’s needs, always.  No one will ever care as much as you.  We did not accept, “she is fine!” and we sought answers instead of waiting for them to come to us.

Year Three taught us to listen.  Year Three gave us a diagnosis.  We thought that would make life easier, but instead, it led us to more questions and further complexities.  Medication battles with insurance and a true inability to process how little we knew made us listen more and savor small moments.  Upon one biopsy that resulted in a huge incision on the neckline, the surgeon soothed a mother’s worry about the scar to say, “We have to make sure she sees her next birthday.  This scar will help us figure out how to get her there.”  Listen.  Trust.  Breathe.  That was Year Three.

Year Four taught us promise.  There was so much promise in the medication we were using and so much happiness and joy brought back to our life when the medication started to work for our child.  A child who was once lifeless and listless was running and climbing stairs.  Promise and joy were restored in many of Year Four’s moments.

Year Five taught us Vulnerability.  We began this journey with Kelsey’s Kaleidoscope and we started to tell our story.  We put ourselves out there and started to spread awareness and raise money for our foundation.  We connected with others who shared our story.  We were weak when Kelsey took a tough turn and faced the return of frequent hospital visits and scans.  We had a fridge full of medication that no longer eased pain or brought joy.  We were vulnerable and scared.

Year Six taught us patience.  We trusted and prayed and after eight months of changes, a calm came for Kelsey.  She was walking, running, and smiling with ease.  We were patient and we were grateful.

Year Seven taught us endurance.  The road had been long and pain Kelsey started to feel emotionally and physically transferred to each member of her family in some way.  We laughed, we cried, and we got each other through.  It was not without a long road and another failed medication.  Spots, weakness, and pain returned to bruise emotions and bodies.

Year Eight taught us hope.  We were beyond touched by the community efforts and new faces that learned of our journey and cared.  We published a book, we went on television, and we reflected on where we are at this time.  We have hope and gratitude.

Year Nine is unknown and undefied.  Together, we are ready to persevere and lift each other.  We plan ahead and dream big.  We thank you for your support and kindness.  We wish Kelsey a happy ninth birthday and pray for all of her wishes to come true.

9 months to 9 years

At nine months old, we were escorted back to an isolated hospital room following a scan that utilized sedation to find Kelsey in the arms of a new doctor wearing her yellow hazmat-style shielding.  She rocked Kelsey in her arms and an immediate connection was made.

This doctor was one who would work with us for the next (almost) decade.  She became a role model to Kelsey, a comfort source when in pain, and a trusted ear for her parents.  Words cannot express the gratitude a family feels when in the care of a trusted doctor for the child and the family.

Last week, the call we have anticipated arrived.

As Kelsey approaches her ninth birthday, this incredible doctor moves on in her career.  She will no longer provide care to Kelsey.

Nine years have taught our family that having an advocate who will call you on the weekend, meet you late in the ER and arrange a 10:00 PM biopsy, and HEAR you are a true gift.  Our family was blessed for nine years with such care.

Tonight, we met our new provider as Kelsey begins a few subtle signs of worry and concern.  We are hopeful for a continued level of care from this doctor.  In his own words, “I can see I have big shoes to fill.”  Though in reality, the shoe size was small, the sentiment rings true.

Brave Day – THANK YOU!

Samuel Mickle Elementary School holds Brave Day for student with rare diseaseSamuel Mickle Elementary school holds Brave Day for student with rare disease

This is how we braved:

Click here to read NJ.com’s story on Brave Day in support of Kelsey!

Thank you for your love and support!

Kelsey’s Fight Song

Easter 2014 went from an Egg Hunt to the hospital.  Kelsey and her mom drove to admit Kelsey because she could not walk.  As Kelsey slept off some pain, her mom cried for the unknown.  Then, a new artist shared her new song.  @RachelPlatten shared the story of her fight and Kelsey’s mom went from sadness to hope.   A powerful song can do just that…

A 2019 Thanksgiving family talent show had many displays of talent.  Kelsey selected Fight Song and the words speak volumes.  Though her voice was faint due to respiratory struggles and croup in the preceding days, the message is clear.