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.

 

What Happens Next

Every day Emily keeps improving.  Every day brings its own set of challenges, however; we keep counting on our blessings as they will always outweigh the other.  We had Emily's follow up since discharge with her primary doc- Dr. Finken on Monday and we just adore him!  His calm voice and sincere love for Emily as we have all been through so much over the past 12 years is so reassuring.
One of Emily's biggest battles since this recent hospitalization is within herself and the stress she carries within her heart of what might happen next. 
Emily has always been acutely aware and so wise beyond her years throughout this disease.  This has served her in so many ways, yet now it is causing her to be fearful of what lies ahead.  She knows that she has battled so many times and won, yet she also knows how hard the battles are to recover from.  
It is always difficult for us as parents to see our children suffer for any reason and it is extremely difficult to watch over and over and over again.  I am one of the more positive people that I know and I also have a lot of strategies and disciplines in place that I come to daily to rise above each day.  And with the help of family we are working to help Emily with coping strategies to feel less fearful and safe for whatever happens next, whenever it may or may not happen.  

Here is some more good from our partnership with Stanford:

“In addition to determining the length of telomeres in the blood cells of SIOD patients, the Lewis lab is determining if two important factors in maintaining telomere length – the enzyme telomerase and hexanucleotide telomere RNA  - are reduced in SIOD patients.” – Dr. David Lewis

We are thankful to all of our donors and supporters on behalf of our Emily and #SIOD research.  

We are blessed!

https://thelittlegiantsfoundation.org/

When in an emergency...

 I have carried around different emergency information for years on Emily in the event of...and just a couple of years ago one of our hospitals that we frequent came out with an “emergency information form” for children with special health-care needs that essentially touched on everything I carried with me for years, but it’s done for you and it’s proven  very helpful when visiting all the different specialists and doctors and in different emergency or crisis situations.
 I thought this could be helpful for other people and not only for your children but for yourselves, for your family members-whether they have special health-care needs or not.  It’s a good practice because you never know what situations might arise in your lives and also it is a conversation to start to have with your family so in the event of an emergency or a crisis situation everyone knows the game plan. (With the holiday season approaching  this can be a great time at family gatherings to make sure all these things are in place)
 Here are my top tips:
1: ask your hospital if they have an emergency information form to plug your information into!
(Info such as: name- date of birth -primary language -male or female -your home address -parent or guardian and your primary care team and phone numbers -closest emergency room and hospital -any allergies medical or otherwise- any medications that you take -any diagnosis or baseline physical exams -And finally any emergency management things like problems or treatment considerations and dates - Be sure to have signatures on the forms!)
This is something you can easily type up for yourselves to carry with you but it is nice to have it documented for you or a loved one’s care management plan in your medical records.
2: have that conversation about being a donor for eye, tissue, and organs & also what to do in event of an emergency.
3:Know your Blood Type ( Again your primary care team can most likely provide this for you or if you are a regular donor you may already know what your type is our friends over at NCBB in Nebraska can easily help you figure out what your blood type is)
 All of these may be challenging and difficult conversations to have with families, however; it’s a lot easier to do so in a non-crisis situation than it is to do at that point and hopefully you won’t have to use it, but it is something that you can carry with you.
4: my last step is to make multiple copies in a bright color and keep it on your person either laminated or in a ziplock with your child, at their school, at the facility and anyone else that might care for them so everyone has the same information.
Again  this has proven  to be helpful countless times for us as a family and so much easier to hand over in any situation rather  than having to come up with or remember all of this on your own.