November Is National Family Caregivers Month

November is National Family Caregivers Month. 

This information was shared from this blog page:   Click Here or read below

It is a time to recognize and honor family caregivers across the country. This year’s theme is “Caregiving Around the Clock.”

This special observance enables us to do the following:

• raise awareness of family caregiver issues,
• celebrate the efforts of family caregivers,
• educate family caregivers about self-identification, and
• increase support for family caregivers.

“Caregiving can be a 24-hours-a-day, seven-days-a-week job,” states the Caregiver Action Network, which spearheads National Family Caregivers Month. “Providing care around the clock can crowd out other important areas of life.”

What challenges do family caregivers face, and how do they manage them day and night?

• Morning: The average family caregiver is a working mother of school-aged children. Mornings become a tricky balancing act of getting the kids ready for school, making sure your loved one has what they need for the day, and then getting yourself out the door for work.
• Throughout the Day: Up to 70 percent of the time, the family caregiver manages the medications. The more serious the condition, the more likely it is that the family caregiver manages the medications for the patient. This means ensuring their loved one is taking medication correctly and maintaining an up-to-date medication list.
• During the Workday: Six out of 10 family caregivers work full or part time in addition to juggling their caregiving responsibilities at home. Most say they have to cut back on working hours, take a leave of absence, or quit their job entirely.
• Evening: Evenings are for family time and mealtime. Nutrition is as important for caregivers as it is for their loved ones. Proper nutrition helps maintain strength, energy, stamina and a positive attitude.
• Late at Night: This might be the only time that family caregivers get a few minutes for themselves to rest and recharge. The chance to take a breather and re-energize is vital so they can be as good a caregiver tomorrow as they were today.
• Middle of the Night: If loved ones may need to go to the emergency room in the middle of the night on occasion, family caregivers should be prepared ahead of time with what they need to know and what they need to have with them.

During National Family Caregivers Month, we recognize the challenges family caregivers face when their loved ones need “Caregiving Around the Clock.” The Caregiver Action Network website (link is external)provides promotional materials for general use, including a media kit, posters and sample proclamations.

The Caregiver Action Network (link is external)(the National Family Caregivers Association) began promoting national recognition of family caregivers in 1994. President Clinton signed the first National Family Caregivers Month Presidential Proclamation in 1997, and every president since has followed suit by issuing an annual proclamation (link is external)recognizing and honoring family caregivers in November.

The Caregiver Action Network (CAN) is the nation’s leading family caregiver organization working to improve the quality of life for the more than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. CAN serves a broad spectrum of family caregivers, from the parents of children with special needs and the families of wounded soldiers to a young couple dealing with a diagnosis of MS and adult children caring for parents with Alzheimer’s disease. The nonprofit organization provides education, peer support and resources to family caregivers across the country free of charge.

I will be sharing information about my journey as a Military Caregiver throughout the month.Check back for the updates, photos and stories.

Colin's Condition - October 7, 2019

October 7,2019

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 pray for God to watch over Colin and to heal him.

Today's Update:
Colin had an appointment with National Institutes of Health (NIH) to review the immune protocol and the results so far of this experimental medication that he is taking.
He has had testing twice on his adrenal function to see if it is safe to take him completely off Prednisone and switch to Hydrocortisone. 
At that time, he was not yet ready.

So at a later visit (August 6, 2019) he took the test again.  
He "barely" showed within range (at the very bottom line).

We were instructed to continue with his Prednisone (steroids) and then switch over to Hydrocortisone when he has plenty of down time to rest and work through it.

He is a also a patient at our local VA (Lake Nona).  However, he is being followed closely by NIH.  

Today he is on: (Listing immune suppression medicine only)

ZERO mg of Prednisone!!

25 mg of Hydrocortisone

10 mg of Tofacitinib

No more Prenisone!  

Predisone has caused so many problems for my husband.

He has Cushings

He has Glaucoma & Cataracts - Steroid-induced posterior subcapsular cataracts (PSCs) 
https://www.ncbi.nlm.nih.gov/pubmed/17900234
(He had the surgery, they also placed a stint into each eye)

We don't know how he will react with this change in medicine.  
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. 

Colin currently has many red spots all over his back and legs. He is completely exhausted, constant head aches and lots of pain in his joints all over. 

I made the mistake of bringing him along with me to a business networking event last Tuesday. That totally wiped him out for the rest of the week. He barely got out of bed.

He was able to attend one of my doctor appointments with me, which was very comforting.

On Saturday he was able to walk, just a little, through a community event. We only stayed for about thirty minutes though.


He has not gotten out of bed now from the pain and exhaustion.
My heart goes out to him, every day and forever.  This situation has been really hard on me as well.  Hard on my body - I have a lot of doctors and procedures and care now that we have left Walter Reed.  I miss my husband.  Colin has no energy, he has no strength.  We don't get to do many things together expect attend doctor appointments.

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.  

Colin's Condition - December 12, 2018

Prednisone Step Down

Medical Information:  Prednisone / Steroids 

December 12, 2018

We recently took Colin to Orlando, Fl for convalescent leave for Thanksgiving break and time with our family and puppies.  
We have returned to Walter Reed National Military Medical Center (WRNMMC) and National Institutes of Health (NIH).

The doctors have given instructions for another "step down" on Prednisone (steroids) beginning with tomorrow's dose.

Background:

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.  His body has suffered a lot of damage from long term high steroid use.  

His last prednisone dosage of 15 mg will be decreased tomorrow (13 DEC 2018) to 12.5 mg.  
Other concerns his doctors have are for his liver and bones.  
He had an updated DEXA scan earlier this week.

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

Colin's Condition - updated Bone Density Scan

Bone Density Scan

Medical Information:  What is a DEXA scan (According to WebMD)

December 2018

As Colin continues his use of Prednisone, doctor's want to keep an eye on his bone health.
They ordered a DEXA scan at his baseline, in the beginning and have ordered a follow up DEXA scan this week.
According to Mayo Clinic, "Corticosteroids also can dramatically weaken bones and lead to osteoporosis".

He is currently taking supplemental Calcium and vitamin D as well as Vitamin D2

According to the Arthritis Foundation  "Prednisone, a corticosteroid drug used for decades to control inflammation, is one of the notorious culprits in bone mineral density loss."

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

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

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).

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

Colin's Condition - NIH Discharge

NIH discharge

Journal entry by Laura Benson — Jul 9, 2018

Colin was discharged from NIH tonight 

NIH admitted Colin for a specific autoimmune protocol.
He was monitored closely from May 29 through tonight (July 9) inpatient and finally discharged back to Walter Reed. He will continue to return to NIH as an outpatient three days/week.  Thankfully NIH is directly across the street from Walter Reed.  
Although he is considered an outpatient, we will be spending many days at NIH -  transporting him back and forth from the Navy base to the NIH campus.

We spent the entire first half of this year looking for other solutions or answers to "What is wrong with Colin?"  We even took him twice to Mayo Clinic in Rochester, MN for several weeks at a time.
Sadly, there were no answers, no prognosis and not even a diagnosis.  The only conclusion is that the medicine he is currently on is causing too many dangerous side effects, and unfortunately they aren't helping control his condition any longer. 
He has been constantly waxing and waning - but never healed or even managed.  He has had several relapses and hospitals stays.  And, every day is pain and discomfort for him. 

 

  
The NIH doctors had planned to taper the immunesuppressive drugs that he has been on for the past 1 1/2 years and replace them with a new experimental drug.  
The drug itself is not experimental, but using it for this purpose is experimental.  
To be clear - this drug is prescribed and used on other types of conditions, but not on someone with DRESS syndrome, Drug Hypersensitivity or the type of immune condition that has manifested in Colin. 

 

The goal during his stay at NIH was to get him off some of the meds through a slow taper.

NIH added a new drug: Tofacitinib to target his jak/stat pathway. 
They also added an antiviral medication, valganciclovir, for his HHV6 reactivation.  

So basically, add the new drugs and taper off the others.
So far - some of the taper was successful, while others were not.     

Today we were told by one of his doctors that this new drug may not cure him, but we were reminded and do understand that he is helping to further science and research and any others that may suffer similar conditions.  

Colin's Condition - Independence Day 2018

Independence Day (4th of July 2018)

Journal entry by Laura Benson — Jul 4, 2018

This year has flown by.  We have spent so much time living in and out of hotels, hospitals and traveling from Bethesda, MD to Rochester, MN to Orlando, FL.

Colin has currently been inpatient at NIH since May 29, 2018.  He agreed to try a new medication that could potentially help with his JAK/STAT pathway.  Additionally, his condition continues to wax and wane and with that he also has also reactivated the HHV6 Virus.  So, the doctors at NIH are trying to control his inflammatory response and his virus with two additional drugs:  Tofacitinib and Ganciclovir

The goal is to add the Tofacitinib and taper off the other immune suppressing medications that he has been on (prednisone, cyclosporine and cell cept).  Long term use of these medications have been causing secondary problems for Colin (dangerously high blood pressure, Cushing Syndrome, glaucoma, acute kidney injury and many others).  The less medication he is on, the better!  Side effects are nasty and they do cause a lot of damage.  

The taper began, first with cyclosporine.  Doctors make adjustments week by week, so we have to be very patient.  Colin has to have his blood drawn and body examined daily.  We have been trying other new things as well, such as milk baths.  (He uses the hospital walk-in tub/bath and I pour an entire gallon of milk into the bath water with a solution of bleach).  
He was finally completely off cyclosporine on Sunday, but then the doctors didn't like the lab results and were not comfortable seeing his rash breaking through, so he was placed back on cyclosporine. 

So the new plan would be to try to taper his steroids.  
This can be tricky, because his body needs to wake up adrenal glands. In the beginning, Colin was on 125 mg of prednisone!!!  He was on 100 mg then 80 mg and stayed around 60 mg for several months.  It has taken well over a year +++ to get his taper down to 40 mg.  He keeps going up and down, from 80 to 100 then back to 80 and then slower on the way down. And even slower as they get lower.  It's a roller coaster for his body and his health.  He has been down on 40 mg for months now.  The doctors have attempted to go lower, but it wasn't successful. Meaning, his body can't make up the difference.  Trying to taper Colin off steroids always causes another hospitalization - because his own immune system can't wake up.  When this happens, doctors add more steroids back on and go back up, which makes the steroid taper process take even longer.

Honestly, we were told back in Spring of 2017 when this all began that a drug reaction would last 2- 8 weeks and that he would be off steroids in about six months - so much for that!!

He has been struggling with the steroid taper the entire time.  And his condition has caused multiple hospitalizations and the loss of so much skin.  So much damage to his body.  It's unimaginable.  And unceasing.  He is so very strong and patient, but it takes a lot out of him to be in constant pain and misery EVERY single day - without a break.  I have not seen Colin have one single "good day" since this all began. We do the best we can to make life worth living and enjoyable as possible - like trips to see the dogs and family in Florida.  But it's not the same when he is sick, handicapped (wheelchair bound) and has to conserve all of his energy.  It's heart breaking to watch someone you love go through this and realize there is nothing that I can do to help him.

Hopefully with the addition of Tofacitinib he can successful taper down to a lower (less damaging) maintenance dose of steroids.  And then doctors can decide which immune suppressing medicines to taper next, if possible.  

To add insult to injury, Colin's 23 year dedicated and highly successful career in the United States Navy is sadly coming to an end for him. (Too soon and NOT the way he wanted to retire; not his choice and not fair to him.)  
The Navy began his retirement process last month.  We were told to move our Florida home into storage and tie up any loose ends, so that we can focus on his Medical Review Board/Retirement while living in the Wounded Warrior Barracks (building 62 as we call it).  

Thank God that NIH has allowed Colin to remain in their hospital for over a month for supervision.  (He was admitted on May 29)  It's comforting to know that doctors have been carefully looking his body over -literally inside and out, every single day for over a month straight.

We can also thank God that He placed us in Washington DC in 2016, when Colin was given orders to DLI (Language School).  Thank God this serious illness and unknown medical condition did not happen while we were living in Northern Germany. 

We pray every day for Colin's health and strength to keep fighting through this and we thank God for putting him so close to Walter Reed National National Military Medical Center and National Institutes of Health, which are literally across the street from each other. 

We are celebrating the 4th of July in the hospital at NIH.  

Thinking of all of you and hoping you have a safe holiday. 

Colin's Condition - NIH Trials inpatient

Adding the experimental medication as well as the antiviral

Journal entry by Laura Benson — Jun 9, 2018

Colin has had a rough week.  Last weekend NIH gave Colin water pills to remove fluid around his heart.  He lost a lot of water and became severely dehydrated.  This took his very high blood pressure and brought it far too low.  Since he already has kidney injury from last year at the onset of his condition, this only made matters worse.  So the team of doctors spent the entire week getting his kidneys functioning and his blood pressure balanced with IV Fluids and medications (although blood pressure is slightly stable, it is still high).  Only then were they willing to finally let him take his experimental medication:  Tofacitinib.

He took his first dose of Tofacitinib on Thursday.  He had to wait ten days!!
Doctors continue to monitor his creatinine levels and also are attempting to taper his cyclosporine dose, slightly.  (Cyclosporine is known for causing high blood pressure and kidney problems.  Colin has been on it for over 12 months).   
He is now taking Tofacitinib twice a day.

Today the doctors introduced Ganciclovir, an antiviral. It is used to treat infections caused by viruses.  
Colin has a reactivation of HHV6, which is something we all had when we were babies.  There are known medical studies following patients that have a reactivation of HHV6 with drug hypersensitivity (DIHS).  Colin has been tested for HHV6 many times this last year.  Occasionally it shows up in blood tests, but has not been consistent.  So, the NIH doctors would like to treat it while he is being closely monitored.  He continues to donate his blood for testing that is used in this type of research.  

All of the medicine that Colin has been taking for the past year are immune suppressants (Prednisone, Cyclosporine and CellCept and now Tofacitinib). All of the strong medications that he takes to attempt to control his flairs and relapses have a lot of side effects that are very concerning.  And if you've been following him - you know that he has had many break through flairs and relapses, which is disheartening.  As you can imagine, he is getting weak and tired from fighting whatever "this" is.  And as many of you have experienced yourselves, all of the medicine that Colin takes causes side effects that also must be treated. 

Thank you all for your prayers because we know God is listening. 

We have had the best doctors examine and treat Colin.  Walter Reed, John's Hopkins Center, Washington Hospital Center, Mayo Clinic and NIH and many others have been consulted from various other hospitals.  They genuinely care and are working hard at learning more about Colin's condition and why his own immune system won't kick in and fight for him.  

Colin's Condition - June 1, 2017

June 1st

Journal entry by Colin and Laura Benson — Jun 1, 2017

Colin started the day with more energy and a very positive attitude!
Last nights IVIG took over 7 1/2 hours!

He had a busy day-all day long, non stop.
Doctors, physical therapy, more ointment and wrapping him up like a mummy and a loud annoying roommate as well as his last round of IVIg tonight. 

We got a call about coordinating housing for him after he is discharged, but that won't be for at least another week to ten days. I will share that when we have worked out the details. (Housing him in the Wounded Warrior Barracks at Walter Reed National Medical Military center).

The doctors shared their conference feedback. 

Many doctors reviewed Colin's case and the feedback is:
The bad news is they still don't know what is wrong with him!!!

According to his doctor today: The good news is that they know many things that are not wrong with him. (She said that to make light of all of the many hundreds of tests and labs he has had the past two months!)

They seriously don't know what else to do other than "wait and see" and respond to his flair ups when he cycles and treat him symptomatically. 

He may have a case of prolonged DRESS with overlapping TEN. 

I hate leaving Colin at the hospital at night. I stayed most nights with him at Walter Reed 
While he is undergoing this treatment he needs to be resting. Meanwhile his roommate gets hauled away for his behavior and another one moved in and is immediately put in restraints. He is definitely in an urban hospital. 

I pray he is safe and stays strong and positive despite his circumstances and his environment. 

My parents drove all the way from Florida to Washington DC today and arrived around 1900. I will post a photo of them below. They were so glad to see Colin with their own eyes. 

And for me - it was so wonderful to hug my parents!