Author: New View for PAN

Hitting Home

When the MLB had its first outbreak close to our home, we felt nervous and worried about how safeguards in place allowed for the entry of positive COVID tests.

When house parties of over 700 guests occurred, we wondered how long it would take to move closer to us.

When face masks are mandated for school, we worry this is far from over.

Then a close relative received a positive diagnosis. Our prayers remain as recovery from COVID now requires hospitalization. Family members await tests and await the days of quarantine hopeful that positive is not a word they hear soon.

Positive is news we need. Positive is what we have to stay, however.

Decisions require careful thought and consideration at every turn.

We safeguard as much as we can but until the reality hits near your home, does it feel real? We struggle to make sense of it all and worry that an unexpected surge will soon lead us further apart.

Be brave and mask up.

Behind the Mask

An immunocompromised child in COVID 19 is tricky. Her mask was purchased more as a memory at the time because it was not a thought months ago, nor has it been since, to have her out in public. When she selected her pineapple print, we thought it was adorable. We never considered having her wear it to get scans, imaging, and pathology completed.

Behind the mask is a brave girl. Her monitoring this summer may be different than usual, but what appears to be “normal” in 2020?

Behind the mask was a smile as she held her father’s hand.

Behind the mask was an anxious face for wearing it for a length of time is not yet normal for hers.

Behind the mask was a proud mom who cannot quite describe how all of this feels in 2020.

Behind the mask was a dad who is always there to support and love his ladies.

Behind the mask was a brother who has matures and grows each time he removes his mask.

Behind the mask, we all look different.

Behind the mask, we are brave.

Behind the mask, we have hope for our future.

We wonder how long we will watch from behind the mask.

What next?

We thought the news of a populated pizzeria closure would raise caution. We had concern and worry for the week ahead. Instead, a few days later, we drove by a favorite restaurant of ours to see empty docks and parking spaces. We have not enjoyed a meal here during the summer of 2020, but we noticed how many others have so far this summer.

Not this weekend.

We saw emptiness.

Another positive test closed another popular dining location for a few days.

Will this continue to be a trend or is it a fluke two weeks in a row?

We applaud the business owners for following all of the rules and sanitation procedures. However, emptiness leads to worry and caution.

Be brave and keep staying safe.

Otherwise, we wonder, what next?

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.

Wednesday Worry

Four years ago, we started this journey and 208 weeks have passed. Some weeks were beautiful, many were difficult, and so much has changed for us all.

To commemorate four years of raising awareness, researching, collaborative efforts, injections, appointments, and bravery, here is a glimpse at our first effort to share our story. Here is a repeat of our first entry, Wednesday Worry.

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This morning, we injected our daughter with life-saving medicine.  For two years, we have been doing so.  We have lost sleep, weight, and what seems like our sanity.  How can we loathe something that helps our five-year-old walk without pain?  It is our Wednesday worry and one we are ready to talk about with whoever wants to listen.

Mary-Claire King changed our lives by identifying the BRCA1 and BRCA2 breast cancer genes that have become household names.  Today, we spoke with founder and president of the DADA2 Foundation, Dr. Eugene Chambers, an accomplished doctor and father of two children with the recessive genetic condition DADA2.  Along with being diagnosed with PAN, Kelsey has the genetic condition DADA2.

We are committed to raising awareness and finding a cure for our children and those we have yet to meet.  As BRCA has become a household name, so should DADA2.  November 11, 2016 will mark a historic day as the Inaugural International Conference on Deficiency of ADA2 will bring this vision closer to reality.   Physicians, researchers, and families from around the globe will gather to share stories as well as diagnosis and treatment options moving forward.    

One phone call today made our Wednesday worry seem less worrisome.  We hung up the phone overwhelmed by the unfortunate and fateful nature of our call.  With a will, there is always a way…

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Stay safe. Be brave.

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.

Be a Light

As virtual graduation ceremonies commemorate the year and reopening phases begin, we continue to hope for the future and 2020.  Bright spots have started to appear.

Today, driving slowly as Be a Light played on the radio, a car was pulled over onto the side of the road.  A woman was standing in the middle of the road holding out her hand to stop.  As the lyrics played, “…be a light” she slowly walked across the road.  Next, it was clear.  This kind woman was carefully placing a turtle onto the grass at the side of the road.  She was freeing a turtle who was stuck in the middle of the road.

This small act of kindness was a glimmer of hope.  She was a light.

Look for the good.  Save a turtle.  Be Brave.   Be a Light.

Difference

Difference is always celebrated in the community of a rare disease family.  Often called zebras for their unique traits, we embrace differences here.

Kelsey mentioned that she had a new song in her head.  She wrote the words for me and has no idea how remarkable they are right now for our world.  Children are our future and our future looks bright tonight…

Still a work in progress, but the current chorus:

Difference

“Difference is love.

Difference is pure.

Difference is power.

Difference is a thing that can never be taken apart.”

Be brave and celebrate your difference today.

Choose Love

It has been hard to find the words.  It has been hard to face the day in 2020.  Masks are worn and isolation is felt all around.  Yet as America slowly reopens, one angry thought overshadows even a pandemic.  An angry thought was felt nation-wide this week and our hearts feel it.

In the first week of June 2020, we are saddened.  We are vulnerable.  We have fear and anger at times in our hearts.

Over the course of these recent days, many families and individuals have come to mind.  Scarlett Lewis is the most recurring voice because she personally knows the pain caused by an angry thought.  Her inspirational message and social-emotional program were developed because of tragedy from an angry thought.

When Scarlett speaks, she always points out that her son, Jesse, lost his life as a hero at Sandy Hook Elementary because of an angry thought.  Scarlett has reached a global scale with the Choose Love Jesse Lewis Movement.

In the first week of June 2020, let’s think like Scarlett.  Let’s Choose Love.   If love is all we need and our actions are driven by love or anger, why can it be so hard to Choose Love?

Scarlett, keep spreading your message and inspiring others to Choose Love.

Reflect.  Hope.  Be Brave.  Choose Love.