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.

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).

Strength

The brave words below are from a young woman with dada2 (Kelsey’s PAN is a manifestation of dada2).  She is an inspiration to me, and I am proud and honored to share her words with you.  Thank you, Anna Maria.

My name is Anna Maria. I’m 24 years old and in February, I had a bone marrow transplant.  I can say what I experienced and what I live by myself. In July 2017, I was told that I had to undergo bone marrow transplant therapy and that I would have no other solutions other than that.

I found myself facing two paths: one was to decide to continue in the disease which would soon bring me to death, or decide to fight for a living and then undergo the bone marrow transplant. If I am still here, it is because I have decided the second way. When I was told all this, I was very scared because it meant postponing my degree, university exams, enrollment in specialist university, the carefree age, the outings with friends, and many other things.

I cried a lot, then I told myself that without health and the transplant, I would have renounced all these things and much else, I would have renounced life itself. In short, I would have faced a few years, always spent in hospital to feel bad. While with the transplant, I would have made some sacrifices in this first year, but then I would have had a beautiful life and I would have enjoyed all the things I lost.

So with courage, I took this choice or the choice to live. I immediately understood that it was an important step in my life and I am very happy with this choice.  I will always keep it in my heart and I will be able to tell it to others. Of course now my path is not finished yet. I’m halfway, but I can tell you that I’m very well. I came to a point where the white blood cells were no longer produced because the lymphocytes had taken over.  I suffered from very strong vasculitic episodes. All these problems had invalidated my life, I was not really well.

Transplantation is the best weapon currently available to eliminate vasculitic episodes due to DADA2 and is strongly necessary, if not indispensable, to refurbish the immune system.  To give courage regarding the issue of hair loss: I obviously lost them too, but if I have to be honest, I find myself much more beautiful like that!

After about two months from chemotherapy, my hair is already growing back. We who face all this, the pain, the suffering, we are special, and we are brave.  This gives us a march more than the others. I can tell you that I’ve never been so happy in all my life.

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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Wednesday Worry

This morning, I injected my daughter with life-saving medicine.  For two years, I have been doing so.  I have lost sleep, weight, and what seems like my sanity.  How can I loathe something that in reality helps my five-year-old walk without pain?  It is my Wednesday worry and one I’m 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, I spoke with founder and president of the DADA2 FoundationDr. Eugene Chambers, an accomplished doctor and father of two children with the recessive genetic condition DADA2.  Along with being diagnosed with PAN, my daughter 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 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 my Wednesday worry seem less worrisome.  I hung up the phone overwhelmed by the unfortunate and fateful nature of our call.  With a will, there is always a way…