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.

Guest Blog – Sort of Back To Normal

Kelsey wrote a guest blog today.  Be brave, stay safe, and enjoy.

“Today I want to say I have felt closer to my family than I ever have before.   I wanted to tell you because you might think it is too much time away from other people.   You may be sad.  You may be lonely.  When you really think about it, you are spending quality time with family that you didn’t get before.  Look on the bright side, restaurants are opening inside and outside for dining.  Be kind.  Be brave.  Be yourself.

If you really get into it, life is getting back to normal but you still have to wear a mask.  It is a good thing because people need to start feeling happy.  They probably need time away from home.  It is a good thing that you can go out and/or stay in.  Life is sort of getting back to normal.   The good thing for me is that I always have a family to see and a car to see them.  I hope you had a family to see, too.   Now that things are a little bit back to normal, enjoy it. I cannot wait to go to a restaurant and EAT!   My family is not ready just yet, but I hope that you get out and can finally go somewhere.”

Be brave and enjoy.

#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.

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!

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).

Birthday Wishes

Family is truly the epicenter of this foundation.  Without the love, support, and generosity of our families, we would not be the organization we are today.

The love we feel from our family also lifts us up.  We have met new families on our family support group site and pray for the families around the world afflicted with PAN and dada2.  It is not always easy to digest the reality of this disease and the daily strife it causes for families.

Last week, we tapped into social media with another feeling; hope.  We know that we are not alone in the rare disease community and we try to lift each other up as a result.  Sometimes, when things get dark, you need to find strength in those around you.

A dear family member has been struggling with her own battle and for her birthday this year, she wanted to do something special for Kelsey’s Kaleidoscope, Inc.  Inspiration can come when you least expect it.  Though she already reached her goal, I invite you to view her fundraiser and want to thank her for spreading awareness and raising funding for our fight.

Love.  Hope.  Gratitude.

May your birthday wishes come true, Jessica.

Click on the link to see the cause or donate!

In a Field of Horses…

In a Field of Horses, be a Unicorn.

May you always be a Unicorn, following your spirit animal …

Nanobots

The bond between a brother and sister can be tough at times. Various interests, ages, and hobbies do not always create a harmonic environment. We work very hard to foster respect, love, and friendship regardless.

Kelsey’s brother worries about her.  There is no question about that. Although he has seen her at her worst, he also sees her at her best. They compete, they laugh, and they play together at times in a way that warms my heart.

Every once in a while, I worry that he feels less special or just “less” because he does not have a medical condition that requires the monitoring and lengths we must go to for his sister.

Then sometimes, I really that he does understand and he is more concerned than I realize.  He was reading a non fiction text and surprised me with the text from above.  He said, “Mom, can you please read this?”

When I read about nanobots that can cure diseases, I stood still and listened.  “Mom, do you think this could be the cure for Kelsey that we are looking for?”

“Whatever it takes,” I thought.  Maybe someday big brother…

Here’s to hoping, wishing, and praying.