February Post

This February (2019) we are still living in "Tranquility Hall" otherwise known as the Wounded Warrior Barracks on NSA Bethesda at the Walter Reed National Military Medical Center.

We are really missing our family this month, so I found some family photos to share in my blog.  

First is Colin and our daughter, Cassandra at her Graduation , next is Colin and I at a Navy Ball in Orlando, FL, then Colin and I in Jacksonville, then the last photo is of our Son-in-Law, Kemsley and our Daughter, Alexandra 

Colin's Condition - January 24, 2019

Immune Suppression Step Down

Medical Information:  Cyclosporine 

January 24, 2019

Colin had his appointment with National Institutes of Health (NIH) to review the immune protocol and experimental medication on January 9, 2019.  A lot of medical information was shared with us concerning his T cells and tregs (Regulatory T cell)  as well as his IgG (Immunoglobulin G).  Most of the information is too hard for us to understand completely, but we understand that doctors are tracking all of his numbers as well as his HHV-6 (Human herpesvirus 6) reactivation.

We were instructed to continue with his Prednisone (steroids) taper, or "step down" as well as try a Cyclosporine step down.

He was on 12.5 mg of Prednisone and 100 mg of Cyclosporine 
First the steroid for two weeks, and then reduce the cyclosporine by only 25 mg off his evening dose.

So, in Colin's morning the following day (January 10) I reduced his Prednisone to 10 mg.  At the onset of his illness Colin was initially taking 125 mg of steroids!  That is a very high (dangerously high) amount of steroids.  He began taking this high dose back in April 2017.

And today, January 24, 2019 I will only give him 25 mg in his evening dose.  He will now take 50 mg in the morning and 25 mg in the evening.
Doctors want to do slow tapers, so his body can adjust and learn to regulate on its own.

The reason for choosing to reduce the evening dose vs. the morning dose is that he takes a lot of blood pressure medication as well, and one of the prescriptions is doubled in the morning. So we will match that with cyclosporine.  Especially since Cyclosporine is a contributing factor in his high blood pressure. (Drug-induced causes of secondary hypertension) 

Doctors have been attempting to slowly taper him off this high dose of steroids, cellcept and also Cyclosporine to replace with his experimental drug:  XELJANZ XR (tofacitinib) 

Here is some information about tapering slowly from Mayo Clinic
https://www.mayoclinic.org/prednisone-withdrawal/expert-answers/faq-20057923



Medical Information: https://www.xeljanz.com

My husband has a very unusual, prolonged undiagnosed medical condition that is chronic.  They have temporarily labeled his condition as immune dysregulation and chronic "DRESS Syndrome" with a reactivation of HHV-6 virus.  
There is a HHV-6 Foundation website that contains "some" information that is helpful to us, but again there has been no one found in the world that has what my husband has.  
So this entire process has been scary, stressful, confusing and challenging.  Which is why we continue to prayer for God to watch over Colin and to heal him.  

Colin's Condition - January 10, 2019

Prednisone Step Down

Medical Information:  Prednisone / Steroids 

January 9, 2019

Today we are back" home" living in the wounded warrior barracks (Tranquility Hall) at Walter Reed National Military Medical Center in Bethesda, MD

Colin had his appointment with National Institutes of Health (NIH) to review the immune protocol and experimental medication yesterday.  A lot of medical information was shared with us concerning his T cells and tregs (Regulatory T cell)  as well as his IgG (Immunoglobulin G).  Most of the information is too hard for us to understand completely, but we understand that doctors are tracking all of his numbers as well as his HHV-6 (Human herpesvirus 6) reactivation.

We were instructed to continue with his Prednisone (steroids) taper, or "step down" 

So, in Colin's morning dose today I reduced his Prednisone to 10 mg.  At the onset of his illness Colin was initially taking 125 mg of steroids!  That is a very high (dangerously high) amount of steroids.  He began taking this high dose back in April 2017.

He is down to 10 mg of steroids today, and we expect his body to react (as it always does with each taper).  His body becomes (even more) weaker and struggles to recover.  Sometimes his skin erupts or gets very thick and actually comes off.  (It's painful for him and frightening for me).  
10 mg may not sound like much medication, but he has been dependent on it for so long that it's extremely difficult for his body to make up the difference and recover when it's reduced.

Doctors have been attempting to slowly taper him off this high dose of steroids, but his body doesn't react well to changes in medication.  

Here is some information about tapering slowly from Mayo Clinic
https://www.mayoclinic.org/prednisone-withdrawal/expert-answers/faq-20057923

This past year doctors have been tapering him off many of his immune suppressants in an attempt to replace them all with the experimental dose and use of  XELJANZ XR (tofacitinib).

Medical Information: https://www.xeljanz.com

My husband has a very unusual, prolonged undiagnosed medical condition that is chronic.  They have temporarily labeled his condition as immune dysregulation and chronic "DRESS Syndrome" with a reactivation of HHV-6 virus.  
There is a HHV-6 Foundation website that contains "some" information that is helpful to us, but again there has been no one found in the world that has what my husband has.  
So this entire process has been scary, stressful, confusing and challenging.  Which is why we continue to prayer for God to watch over Colin and to heal him.  

Texas work and possible house hunting

The Benson Ohana will be heading to Texas in a couple of weeks....

Checking out the area for work (JAFRA, Game Plan Media Events, Game Plan Local) and also to possibly move here when Colin retires.
Starting and ending in Dallas (traveling through Waco, Austin, San Antonio, Houston and back to Dallas)

ISO- Looking for friends and family and recommendations in Dallas, Waco, San Antonio and Houston, Texas!

In a few short weeks I will be in Dallas for a JAFRA conference.

Jan 16-19 staying in the Dallas area
Laura Benson's Jafra Page

Then, Colin will be joining me afterwards, so we can explore the area looking for a possible new home after his retirement.

We will be in the area for another week checking out various local areas and neighborhoods.

While traveling around the cities in the area I will be continuing to work with Game Plan Media Events and Game Plan Local as well as building up some new pages that I just started for local area in these cities:

We will leave Dallas Dallas Local and head to Waco Waco Local and then Austin Austin Local followed by San Antonio San Antonio Local and last, Houston Houston Local

When we are finished we will make our way back up to Dallas around the 27th

Contact us with any advice for areas to check out and visit or if you would like a visit!! ❤️

Christmas Plans 2018

Happy Holidays and Merry Christmas | 2018

This year we plan to visit our oldest daughter in Pensacola.  She and her husband are living near NAS Pensacola.  Our Son-in-Law is in the Air Force.  They were just married this past May. We have not seen their home yet, so we are very excited!  

Since we have a long drive from Walter Reed National Military Medical Center, we will have to stop half way.  We booked a hotel near Charlotte, NC aka: the Queen City

My parents will be traveling up from Central Florida with our youngest daughter and our two puppies: Wesley the Boxer and Princess Buttercup the Puggle.  We have reserved a pet friendly hotel in Pensacola. 

Preemie Packing Party - Them too

We are looking for a donations and supplies for our Preemie Packing Party this December, in Bethesda MD.

Our Deadline is: December 20

Location - TBD

 

There will be a group of military caregivers and volunteers putting together care packages for new mothers and NICU babies, in Bethesda, MD.

 

We are asking local businesses to support our group effort by donating supplies for the Preemie Packing Party.

In exchange, we will be contacting local media sources and posting on social media to share our event and our supporters.

 

Please help our organization, and our babies.

 

We can provide a wish list and we are also open to suggestions!

 

Thank you very much for your consideration

 

Laura Benson

Laura@GamePlanLocal.com

Laura@GamePlanMediaEvents.com 

 

808-725-7749

202-670-6650

​

Go Fund Me Page

Details:
Hello, my name is Brandi. My request is quite simple, I am trying to raise money for  families in the NICU. (Neonatal Intensive Care Unit) Many of these families  are confused and scared because why wouldn’t you be? I want to help these families by taking away some of the stress, and by donating items I think would help them. Currently, there are 8 families in the hospital that I am trying to donate to. My wish is to get the gifts together before Christmas as nobody wants to or chooses to be confined to a hospital room on holidays. Please help me reach the goal so I can buy and get the packages to the families close to Christmas!
So this fundraiser is to put together bags of things such as chargers, stress balls, non perishable snacks, herbal teas, reusable bags, nex gift cards, iTunes gift cards, journals, pens pencils, headphones, kids coloring packs, body travel sets, gum, tissues, certain books to read to babies and preemie button up onesies. These are gift bags to help alleviate some of the stress off the families of the babies being in the NICU. So it’s built for the families not the babies necessarily.
My intentions are to continue offering these care packages in the future with the right sponsors and support from you all!
Thank you so much!

About Them too is a startup organization created by Brandi Lambert that will support the needs of new military families, specifically in the Neonatal Intensive Care Unit (NICU).
Brandi Lambert can be reached at:
803-280-7929
themtoofoundation@yahoo.com

The Greenbrier Hosts Bedtime Story with Patriot Pup

THE GREENBRIER HOSTS Bedtime Story with Patriot Pup

(White Sulphur Springs, WV) – Born and raised in West Virginia Author, Elisa Camara, has been invited to share her Patriot Pup Book Series during a Special Event “Cookies and Milk” at Fizzy’s Land of Oz at The Greenbrier on Friday November 30,2018 and Saturday December 1, 2018.


We invite you to attend these Special Events at The Greenbrier and an opportunity to meet the Author of Patriot Pup

Event Calendar Link

  

PATRIOT PUP is a friendly, adventuresome puppy that teaches patriotism. It is a one-of-a-kind children's book series specifically written for children to learn what it means to love our country. The story’s themes of bravery, loyalty, patriotism and family make for an enjoyable read which will entertain the under-10 crowd, and the fun illustrations bring the lively tale to life. Patriot Pup is an All-American tradition to be handed down for generations to come!


Camara will be at The Greenbrier at Fizzy’s Land of Oz for a meet & greet and book signing. Also joining the event will be, the Patriot Pup Mascot!

Camara is the sister of a United States Marine killed in the 1983 Beirut Embassy bombing in Lebanon. She honors her brother’s memory through a children's book series called "Patriot Pup" which is geared toward teaching young children the meaning of patriotism. The first book in her series, introduced the main characters of the story: her brother Sgt. Mecot Camara, her youngest son Hank and a mischievous dog named Patriot Pup. The second book in the Patriot Pup series teaches children about the special meaning of our National Anthem through a fun baseball themed story.


About Elisa Camara:

Camara’s first published book titled American Brother was chosen as a top ten finalist for the prestigious US Marine Corps Alexander Award for Excellent Writing. Her creative writing skills combined with her love of children and our country set fire to the creation of PATRIOT PUP.












For more information about Patriot Pup, contact Elisa Camara at patriotpup.us@gmail.com or visit her website at http://patriotpup.us

Giving Tuesday - Patriot Pup

I am sharing this post for a good friend- Elisa Camara, the author of American Brother and the Children Series: Patriot Pup 

This December Patriot Pup is aiming to raise $5,000 to fund a very special event in conjunction with The Gary Sinise / Snowball Express Event.

Please help us provide 550 children Patriot Pup Plushies (stuffed animals) to spread our Patriot Pup love to children who have lost their moms or dads in combat while serving our country.

This event is dedicated to serving the children of our fallen military heroes, surviving spouses and our Gold Star families. Elisa Camara, who is also a Gold Star Sister, states, “This project is very dear to my heart”.

Your donation will help bring smiles to the children of our fallen military heroes.

Thank you so much for your generosity and warm heart!
Patriot Pup 

Gary Sinise Foundation
#GoldStarChildren
#GoldStarFamilies
#snowballexpress

#GivingTuesday 

Search Go Fund Me and type in PatriotPup or use this link:
https://www.gofundme.com/patriotpup

2018 Holiday Mail for Heroes

The 2018 Holiday Mail for Heroes campaign through the American Red Cross and the American Red Cross - Walter Reed National Military Medical Center is here!

Every year we have a window of time for the community to send cards to our patients and wounded warriors for the Winter Holidays. The campaign has several deadlines that relate to specific holidays so please refer to the attached information.

Please note the address and attempt to correct anyone who may have outdated information. We will continue to post more info throughout the season.

Colin's Condition - November 23, 2018

CellCept Step Down

Medical Information:  https://www.cellcept.com 

November 23, 2018

Today we are visiting family and our dogs in Orlando, FL

Before leaving Walter Reed National Military Medical Center (WRNMMC) and National Institutes of Health (NIH) we were instructed to "step down" Colin's medication on November 23rd.  

So, in Colin's evening dose I will be reducing his CellCept medication by 500 mg.

He is currently taking 500 mg in the morning and 1000 mg in the evening.

This past year doctors have been tapering him off many of his immune suppressants in an attempt to replace them all with the experimental dose and use of  XELJANZ XR (tofacitinib).

Medical Information: https://www.xeljanz.com

Caregiver Appreciation Month Open Forum

November is National Family Caregivers Month

Thank you to Linda Rasnake (FRSA: the WTB Care Coordinator at Walter Reed National Military Medical Center) for putting together this wonderful caregiver luncheon today at the USO Walter Reed National Military Medical Center  (Nov. 14, 2018)

Linda made this wonderful banner for Mrs. Hollyanne Milley, wife of the Army Chief of Staff, who was present today. The banner had photos of our faces. That was such a nice personal touch. And she and her husband also made these clocks for some of the caregivers with our faces on it. Really nice! Very thoughtful

Linda is so incredibly helpful, full of support, love and encouragement. 
I thank God for her!   Even though she is supported on our base by the Army she goes out of her way to get to know each of us and doesn't turn anyone away based on which brand of military our loved one is serving.  (Mine is Navy)

She has so much valuable knowledge that helps us (NMA's and Military Caregivers) get through the difficult transitions and adjustments that happen when you go through something devastating like this. 
Especially when you are suddenly put in a position or medical crisis that changes your whole world. This enormous weight of responsibility is given to us by the military, as you are a trusted caregiver for your service member. ❤️🙏

NMA:  The Non-Medical Attendant (NMA) program is designed for seriously wounded, ill and injured Soldiers who could benefit from the presence and assistance of Family or friends. 
FRSA: The Family Readiness Support Assistant (FRSA)is an integral part of the FRG, an official Army program established pursuant to AR 600-20, Army Command Policy. Unit commanders at all levels are expected to establish and/or support FRG operations.

Colin's Condition - November 9, 2018

Prednisone Step Down

Medical Information:  Prednisone / Steroids 

November 9, 2018

Today we are still living at Walter Reed National Military Medical Center (WRNMMC) and Colin is still under the medical care and immune protocol at National Institutes of Health (NIH).

The doctors have instructed me to "step down"  Colin's Prednisone (steroids) today.

At the onset of his illness Colin was initially taking 125 mg of steroids!  That is a very high amount of steroids.  He began taking this high dose back in April 2017.

He is down to 15 mg of steroids today, and believe me as I write this - we are so worried.  Each time we taper his steroids - he flares.  15 mg may not sound like much medication, but he has been dependent on it for so long that it's extremely difficult for his body to make up the difference and recover when it's reduced.

Here is some information about tapering slowly from Mayo Clinic

https://www.mayoclinic.org/prednisone-withdrawal/expert-answers/faq-20057923

Doctors have been attempting to slowly taper him off this high dose of steroids, but his body doesn't react well to medical changes.  

This past year doctors have been tapering him off many of his immune suppressants in an attempt to replace them all with the experimental dose and use of  XELJANZ XR (tofacitinib).

Medical Information: https://www.xeljanz.com

2018 Veterans Day Free Meals, Discounts, Sales and Deals


2018 Veterans Day discounts, free meals, deals, and sales. As Veterans Day approaches, we will continually update this list as restaurants and companies announce their Veteran’s Day specials. Typically offers are announced just before Veteran’s Day in late October and early November.

Veterans Day 2018 will be on Sunday, November 11th, 2018 and designated as a Federal Holiday on Monday, November 12th, 2018.

For information on National Retail and Services Offered or Local Veterans Day Offers, visit our other two Veterans Day offers pages!

Follow this introduction over to the website for Military Benefits, for an expansive list

Source: Military Benefits
Read more: https://militarybenefits.info/veterans-day-discounts-sales-deals-free-meals/#ixzz5W9Acivrr

Sgt. Mecot Camara Tribute

Patriotic Tribute to Sgt. Mecot Camara -

Please join us for the unveiling of Mecot's Portrait at MIssion BBQ. 

Let us come together to honor Mecot and share a wonderful dinner together in memory of him and his fallen brothers from the Beirut Bombing that occurred 35 years ago on October 23, 1983. #NeverForgotten

Thursday, November 15, 2018 at 7 PM – 10 PM EST

MISSION BBQ (Oviedo, FL)
968 W. Mitchell Hammock Rd, Oviedo, Florida 32765

United States Marine Corps Sargent Mecot Camara, was killed in action in the October 1983 Beirut Bombing. While serving there as an international Peacekeeper he would write letters to family and friends asking them to send him candy and balloons to give the children. His patriotism and love of children inspired his sister, Elisa to create a patriotic book series, Patriot Pup. 

#SupportVeterans #SupportMilitary 

Thank you for your Service

https://www.facebook.com/PatrioticTributeUSA 

Requesting Patriotic Tributes

In the past our goal was to support local veterans groups by bringing together the Veterans and the Defense Community as well as the General Public through Community Events, giving the general public an opportunity to appreciate our local/hometown heroes.

We conducted these events in Orlando, Florida with the support of local veterans groups, chambers, media sources and volunteers.  

Since moving away to Washington, DC and becoming a full time caregiver to my military spouse at Walter Reed National Military Medical Center, I am no longer able to carryout plans to execute these events in person - however, it would be my honor to recognize others throughout our great country by sharing their events, recognition and support of our nations heroes. 

We encourage you to post your events and appreciation, and we will help you share them.  

God Bless the USA.

911 Tribute Events

Annual Military & First Responder Appreciation Event “A unique opportunity to honor and appreciate the men and women in uniform that  put themselves in harm’s way”.

Unique Special Event honoring our First Responders, Police, Fire and Military

• Events were held in Orlando, FL from 2012-2016
• First 100 families receive an event tote bag filled with goodies
• Business and Non-Profit Vendor Booths available
• Motorcade  and Parade 
• Entertainment Show and Tributes

With the help and support of Semper Fidelis of America, our body of members assisted with planning, working and helping to find venues for the following events.

Previous Annual Calendar of Patriotic Tribute Themed Events:

1.  Vietnam Veterans Day
2. Armed Forces Appreciation Day
3. Memorial Day
4. Flag Day
5. Patriot’s Day
6. TVeterans Day
7. Pearl Harbor Day

Old/Archived social media 
Twitter:  @911TributeFL    
Facebook:  www.facebook.com/911TributeOrlando


Current Social Media will now be run by USA and Patriotic Tribute sites
New Twitter:  https://twitter.com/USATributes
New Facebook: https://www.facebook.com/PatrioticTributeUSA





previous years flyers:

Coming Soon

previous event photos:

Coming Soon

Purpose of the Patriotic Tribute Blog

In the past our goal was to support local veterans groups by bringing together the Veterans and the Defense Community as well as the General Public through Community Events, giving the general public an opportunity to appreciate our local/hometown heroes.

We conducted these events in Orlando, Florida with the support of local veterans groups, chambers, media sources and volunteers.


Since moving away to Washington, DC and becoming a full time military caregiver to my navy spouse at Walter Reed National Military Medical Center, I am no longer able to carryout plans to execute these events in person - however, it would be my honor to recognize others throughout our great country by sharing their events, recognition and support of our nations heroes.


We encourage you to post your events and appreciation, and we will help you share them. God Bless the USA.

Veteran's Day 2018

Thank you for your Service!

Honoring your family’s military members.  
Please share your photos and story with me and I will post them on my Patriotic Tribute Facebook Page (link).

Gold Star Families to receive Patriot Pups at Walt Disney World

Patriot Pup has reached thousands of children in the central Florida area and now they are looking to expand across the United States.

Their mission is to teach patriotism to children by sharing the Patriot Pup book series in schools, book stores, and family fun events.

This December, they will be seeking corporate event sponsors to help raise funds for gifts for each Gold Star Child. This gifts will be given during a very special event in conjunction with The Gary Sinise Foundation Snowball Express Event.

This organization is dedicated to serving the children of our fallen military heroes, surviving spouses and our Gold Star families.

Every year The Gary Sinise Foundation / Snowball Express sends thousands of children of our fallen military heroes to Walt Disney World.

Patriot Pup has been invited to share during the story time event for opening ceremonies December 8th at Walt Disney Resort in Orlando.

They are seeking corporate sponsorship for 550 Patriot Pup stuffed animals to give to the Gold Star children who have lost their moms or dads while serving our country.

If you can help, please contact the author directly:
Elisa M. Camara Patriot Pup American Brother
https://www.amazon.com/Elisa-M-Camara/e/B074TYXJTT/

https://www.garysinisefoundation.org/progr…/snowball-express

Colin's Condition - October 26, 2018

Prednisone Step Down

Medical Information:  Prednisone / Steroids 

October 26, 2018

Today we are still living at Walter Reed National Military Medical Center (WRNMMC) and Colin is still under the medical care and immune protocol at National Institutes of Health (NIH).

The doctors have instructed me to "step down"  Colin's Prednisone (steroids) today.

At the onset of his illness Colin was initially taking 125 mg of steroids!  That is a very high amount of steroids.  He began taking this high dose back in April 2017.

He is down to 17.5 mg of steroids today, and believe me as I write this - we are so worried.  Each time we taper his steroids - he flares.  That may not sound like much medication, but he has been dependent on it for so long that it's extremely difficult for his body to make up the difference and recover when it's reduced.

Here is some information about tapering slowly from Mayo Clinic

https://www.mayoclinic.org/prednisone-withdrawal/expert-answers/faq-20057923

Doctors have been attempting to slowly taper him off this high dose of steroids, but his body doesn't react well to medical changes.  

This past year doctors have been tapering him off many of his immune suppressants in an attempt to replace them all with the experimental dose and use of  XELJANZ XR (tofacitinib).

Medical Information: https://www.xeljanz.com