We Take the Good, We Take the Bad...

This past week has been so full of emotions.  I hardly know where to begin.  As I shared on last week's blog we lost a dear transplant friend, Emerson Nicole White at the age of 13.  While this has been heart wrenching in and of itself, then a few days later we learned of the passing of another SIOD child, Leart at the age of 7.  Leart was diagnosed in October of 2014 at the age of 3.9 years and and this October had a kidney transplant from his momma, but it rejected only 12 hours later and on November 21st he got his angel wings.

I become friends with these families, first they find us or are put in touch with us by way of the Little Giants Foundation and we share experiences, I answer questions and work to guide them on this SIOD journey as best as I can and each child is so important to me.  We have done so much as a foundation and because of donors and supporters we have been able to send a lot of money to SIOD research funding, but at times like these it doesn't seem to be enough.  It is deflating, yet empowering. Empowering because I know how desperately we need more steady donations to come in to help fund the life saving research happening at Stanford.

Please consider us this Giving Tuesday- Dec 3rd and during our affiliates Matching Funds Program Dec 1, 2019-Jan 6, 2020!  Click DONATE at this site or on our website and if your heart is lead to, click the monthly drop down menu option.  Every dollar matters!

We want to thank the DO GOOD RUNNER group for putting on a charity run at Zipline Brewing Company in Omaha this past Sunday for Little Giants!  It was a beautiful day for a 5K!

The girls and grandmas and I delivered our -what has become an annual tradition the past several years- "Emily's Comfy Pillows" to children battling an illness. We have given these pillows to Children's Hospital in Omaha, UNMC Pediatric Unit, AI du Pont Children's Hospital in Delaware, and now to Angels Among Us- our non profit friends who help financially for children going through cancer treatments and their families.  All of these places have helped us and we are happy to be able to spread the comfort and joy.

The story behind the pillows:  While a patient in PICU back in 2009 (and many times before and since) , Emily’s grandma Shari and her aunt Marsha made pillows to help support her on her side and to cushion her. 

We offer Emily’s Comfy Pillows for the family member to use while they are healing as our way to pay it forward and let them know they are not alone in this fight. Emily has been at UNMC and Children’s in Nebraska, in Delaware at Alfred I duPont Hospital for Children and Stanford Lucile Packard Children’s Hospital. We invite the family to use Emily’s Comfy Pillows for their ailing family member or pass them along to help another child during their stay in or out of the hospital.

 Angels Among Us

 
Leart at age 3.9

A Tribute for a Treasure

I'm not quite sure when our first official greeting was, nor am I sure it even matters as once we began talking an instant bond and friendship was formed.
I remember walking by, on those rare occasions I left her side, and seeing this precious little one with the dark, coal thick hair and the tubes and wires from her body and then seeing her mother in the same chair I sat in catty corner down the hall.  Her mother had the same beautiful hair and the same look over her child as I did.
I had heard a few things of their story here and there and wanted to connect for some reason.  I'm not sure why really because back then I was real guarded of making new friends while our girl lay in a fragile state.  One day the opportunity presented itself as we were seldom out of our rooms and especially not at the same time.  On the PICU floor especially you are isolated for health reasons, yet isolated from what feels like the world at time in your room for another.
When we met I do remember how we both had wanted to hear one another's stories as we had both heard about our children and their chronic illnesses that were baffling doctors.
Over the weeks, the months, and soon what became years, this mother and I shared many moments together.  From happy milestones and small wins for our baby girls fighting their battles to the fears, depths of pain, struggles with "living" in the hospital, to adjustments at home, with friends and family.  We had many late night talks about having chronically ill children and what that carries with it.  We had those hard talks of what to do when, wha to do if and how to do this or that.
Our girls, although having different transplants, different reasons for them and different chronic needs, what was similar was how the two very sick little girls stayed resilient and have been teaching the world- quite literally-about very rare medical issues, paving the way in the medical world and capturing the hearts of so many and so many we may never even know.
Not only did that mom and I become friends, our whole families did.  We'd keep lightly in touch between hospital visits and keep up with one another's posts, get together outside of the hospital when we could ( depending on who had what "bug" at the time).  We celebrated birthdays as we treasured each passing year.
Time was not always good to us, yet we made it work for our chronically ill worlds.  I felt like we had quite the dynamic duo forces amidst us: Emi and Eme (Emily and Emerson) and Erika and Erin- The resilient warrior princesses and their advocate warrior moms.  Two different causes, two different rooms, two kinds of illnesses, two unique stories, yet our missions the same: to teach through our children, to love them to the fullest and to provide the best quality of lives for our daughters.
And now- within what seems like a blink of an eye- one of our late night talks has become reality.
Emerson Nicole White died November 15th at the tender age of 13.
I felt honored to talk to Erika that night as she shared with me of what finally occurred and now as I weep and wrestle with her loss my heart aches for Erika and her boys as their hearts are shattered into pieces that may never be repaired.
I feel as most must in this situation, compelled to do something yet knowing nothing I or anyone else could do can ease their pain.  I realize it is for selfish reasons I feel the need to help as it may bring me some comfort to feel as though I am doing something. I know despite the emotions I am feeling now they can never be enough to help our dear friends we met over a decade ago in this chronically ill world where transplants unite us forever.
There are a group of mommas and their families we met all around the same time and have remained friends and share our own stories together for another time, yet I treasure each one dearly.
If you haven't heard in years past of our friend Emerson, please go to her Hope for Emerson page and see her story.  It is not only remarkable, it is rare and she is beautiful- a life size porcelain doll we will treasure in our hearts forever.
https://hopeforemerson.com/

 One of my favorite photos of Emerson and her momma at the beach, which is one of their happy places.

The dynamic duo OUT of the hospital.  Emily doesn't know yet as in her fragile state right now Joe and I feel this would be too much for her to bear right now.

Brighter Days Before Us

Things are beginning to get brighter.  Emily is not magically cured, or better, or anything, however every day we believe and every day is a new day to be better than the day before.

Last week Emily had reinstatement evaluations for some therapies and they went well and there is a game plan ahead.  I've always felt it is important to keep her moving and as active as possible because like anyone when we are in motion to whatever capacity we are capable we simply do better in our daily lives.  Quality of life is top priority.

Emily's aquatherapy is improving as well as far as her getting more comfortable in the water again.  For those that don't know- she is a fish in water and her not wanting to go under the water is counterintuitive to her nature.  Baby steps.

Emily has another evaluation for her episodes tomorrow and as far as the foundation lots of cool things are happening!  Stay tuned for more on that as I am able to reveal!

Believe

Falling into our new routines

Although each day is a roller coaster ride, it turned out to be a descent Halloween!  Emily had a home school visit, followed by some aqua therapy and LOOK- she got in the pool today- not under water or in the deep end like usual, but she got in! Then on the way home- thankfully close to home- she had an episode so we hung out in the mom van awhile when we pulled in the lane. She then decided to NOT go Trick or Treating and then last minute decided to go! We had "escape plans"- grandma's- a friends house- and the mom van. She had a good time out with her sissy, Joe and I! We went before it got dark to help her mindset. 

Emily is truly such a source of inspiration! The other day she had an episode coming on when we arrived at her aquatherapy session. She used her breathing and focused on some techniques and with some coaxing to go in we made it to the pool where between her therapist and I managed to get her to sit on the steps in the therapy pool and by the end she was feeling stronger. Then we were off to gather some much needed groceries. Her face when trying to figure out which steak she wanted is priceless! Keep powering through our brave, resilient, warrior princess!


Not sure how to take it when the neurologist residents, fellows and attendings are excited to see the #SIOD girl and study her brain some more.
Joe and I are all about helping others and if this can help not only other #SIOD children and children with epilepsy then by all means study away!
Yesterday’s appointment brought up some interesting questions, observations and slight adjustments.
We continue to sit back in amazement at our warrior princess!

Every day Emily keeps pressing on. Here she is working in two different therapies ( one for continued neck/arm pain) and the other to slowly get her comfy back in the saddle again! 

  

 

Another Challenge to Face

Anxiety.  It can cause severe impairment, distress and mess with your mind.  It can interfere with one's academia, social and family activities.  It can be a challenge that many have, yet few are aware of or know how to react, behave or help the person who is having "episodes".

Emily has dealt with many challenges head to toe living with SIOD, however; this "anxiety" is new for her, for us and how to help her best.  Since this most recent hospitalization she had to deal with seizures and then her body said- hey, you've taken on so much, yet let's add anxiety to the mix.  Emily is getting frozen in fear of what will happen next, who will be able to help her like we do and how to manage life outside our home.  It is excruciating to watch as her parents, and plain old not fun.  We have been working through it with her and using some techniques, but we are finally at the point where she needs more tools in her kit and getting professional help.

It is so weird all of the emotions that come up.  We have dealt with a kidney transplant, cancer twice, debilitating seizures, double hip reconstruction, serious fungal infections, and 55 surgeries, and this Little Giant has conquered them all, however; this new challenge is throwing us all for a loop.  She will conquer this, too- we know it.  She has so many people helping her and loving her and praying for her and we are very appreciative.  For now we keep loving her, helping her and holding her close to help her believe in herself once again.

We appreciate all of our friends who have come forward to share their anxiety stories and to comfort Emily in that she is not alone and those who have offered some guidance.  We hope that if you are someone reading this and you have anxiety that you have tools to work through it as well and if not we hope this encourages you that you are not alone and to seek help as well.

Pictured with our resilient, warrior princess is our friend and her massage therapist for over a decade- Kim Kelly.  Emily saw her Sunday to help with her aches and pains and some brain work to help ease her body of being in constant fight mode.

BELIEVE

I kept searching...

I kept searching and reading and questioning what was happening over twelve years ago when our daughter, Emily first started presenting clinical signs of an unforeseen genetic diagnosis of SIOD.  Emily's kidneys were failing at a rapid pace despite typical drug protocol precautions and before we knew it she was getting a kidney transplant from her dad.  We thought- whew- okay now we can breath again- nope- she got PTLD (post transplant lymphoproliferative disorder- cancer) and it developed into Stage 3 Lymphoma.  Then as we thought she had it beat- not 3 months later it came back.  During this time I dove into everything I could get my hands on and talked to every doctor I could about WHY and what might be the underlying factor.  Finally we got an answer through more blood work, skeletal scans and testings.
I was an English teacher and literary criticism was my forte' and so researching came pretty second nature to me and it was a part of this prognosis I felt I could control.  I still rely on this tactic to keep me sane.  It has served me well over time and even though I am no longer dissecting what Shakespeare, Virginia Wolf, or Thoreau meant in a certain passage, I am figuring out what SIOD is and directly in contact with the researchers that are working hard to come up with a way to prolong our otherwise life limiting children's lives.
Did you know that research actually began with Dr. Boerkoel in Canada and our initial efforts began there.  Unbeknownst to me at the time, a Dr. D Lewis was traveling to this lab and knew about our Emily in the lab.  Why is this important?  Because fast forward to 2017 when the Canadian lab had shut down, Dr Lewis at Stanford took what could be salvaged from Canada and went to work in California.  This is important full circle stuff here.  It meant we didn't have to give up hope, it meant we didn't have to find, beg and borrow for someone else to help us find a way to help not only Emily, but other children as well.  It means that funding and grants we otherwise couldn't get are now possible that the research is in the USA.  It means we really didn't have to skip a beat in our efforts to educate, raise awareness and funding for SIOD!
As Emily works on recovering from yet another hospitalization, another complication, another stressor on her warrior body because of SIOD we ask you to take a look at our website link below and see how this quest fits into your world and what you might be able to do to help.  Please continue to follow and share and give from the heart.
https://thelittlegiantsfoundation.org/

Believe-

When you think you've got it

This past week has remained interesting to say the least.  Our little giant had her every 21 day intravenous immunoglobulin therapy known as IVIG and labs, her younger sister had her 3rd grade music program, some good friends got married and our Little Giants Board celebrated the successes of our recent Little Giants Annual Farm Run.

Throughout all of these activities besides the IVIG Emily has remained at home and fearful of daily activities, routines and going to school.  I'm not going to be able to explain it all here as I really don't even have a true grasp on it yet myself, yet I know that just when we thought we might have figured it out and Emily might be turning a corner we thought wrong.

Monday Emily had a really bad episode and today it was a challenge even to get her convinced it was okay to go to the hospital to get her renal ultrasound and dexa scans in preparation for her child developmental clinic next week.   Her head still hurts from yesterday's episodes, she's still dizzy and noise and light sensitive. Every day and parts of every day are different and have their own challenges, yet the goal remains the same: to help Emily live her best quality of life and right now that goal needs much tender loving care and work.