GVHD Wall of Hope | BMT Infonet

Inspiring messages from people who are living with GVHD

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Dale

I have learned to live with my new normal. It was hard at first but got easier over the years. My biggest struggles were the GVHD with my eyes and my lungs. My eyes got worse at first, but after finding the right professional

Marie: Parent of Ezra

Despite the immense challenges, we still have hope for a brighter day, a less complicated life. Ezra is here, alive with us and we couldn't be more grateful. Cherish the small things in life as that is what really matters

Robert

Those of us warriors and those lucky enough to have support people are blessed! As we fight the gvhd we have a life hopefully like mine cancer free! Yes our new reality is different and harder at least I am here to watch my

TJ

Fight for the people you love. Never give up hope in the midst of a dark time. What inspires TJ to fight is his family, who loves him to bits. TJ has been through more than any kid should, but here he is fighting. I am so glad to

Chad

Through all the challenges Chelle (my wife) stays strong. She sticks by the motto we took on as a family after her AML Diagnosis, “We Can Do Hard Things”. She uses the resources available to her and is here with us. Most

Desiree

I pray a lot. I believe God must have a bigger plan. I’m grateful for my family, friends, and donor. I find that my grandchildren give me a lot of my strength because I want them to see me better. Every day is a blessing, even

Tamberly

Honestly, my husband, my daughters and my Grands are what give me hope and the strength to keep pushing forward. I have a lot to look forward to in my new life and with their help I will not let GVHD control the life I have been

Cherie

Like all gifts these new life-saving cells that we have been gifted can sometimes be complicated. Speak to those new cells and ask them to care for you but not harm you. Those new cells are doggedly determined to save you or

Susan

We continue to live life to the fullest, adjusting activity level as needed to accommodate for our "new normal" way of life. As Stuart says, there are lots of options to combat this disease and death isn't the option for him. God

Maria

"This too shall pass" This is the phrase that I repeat to myself every day to move forward and endure all the symptoms of GVHD. I have genital GVHD, skin GVHD, eye GVHD and many other symptoms that make my daily life very

Danielle

Thanks to Photophoresis, things have imporvd. I also take Jakafi which has helped stop the progression of GVHD. Scalera lenses have helped with the dry eyes, and surgery will assist with scar tissue. I am extremely happy to be

Jenn

My struggle with worry, pain, and discomfort has made me stronger and more comfortable in my own skin. My fine-tuned inner strength has put me in a better position to ignore small annoyances and to help others get through their

Ashlee

We always say love is our magic and our miracle. We have been blessed by the beauty in the pain. The lessons, the perspective, the appreciation for every moment. It is not alway easy! It is a daily practice, but we do have so much

Charles

Almost 5 years cancer-free and thankful every day. Unfortunately, my vision was affected post-transplant and hasn’t improved much after eye drops and supplements. But I realize everything is in God's hands, and I have given it to

Steve

To my fellow survivors, “Make a Difference! Enjoy the good moments and the good days! Your presence and your stories make our lives better as we travel this troubled plane. For a time.”

Colette

While GVHD has taken over a portion of my life, I am grateful for all the hardworking Doctors, Nurses, Nurse Practitioners and staff at Dana Farber Cancer Institute who are part of my care. Their encouragement and dedication to

Greg

What inspires me? Family! I will never give up!!

Daniel

I have found personally that my positive attitude and optimism took me further along in my journey than did my rare moments of fear, anxiety and introspection. I made sure I stayed as physically active as my treatments permitted

Joyce

Hope is the constant you need to strive for. When you get discouraged, think positive- keep going-do what your told by professionals-gently remind loved ones that you do put up with side effects and it is not your choice that it

Tereena

I always try to appreciate the small things in life. I know I am not what I used to be, and learning to love myself in my "altered" body is something that helped me to move forward.

Brian

My hope has lied with Jesus since day one, GVHD or not. My message to all who deal with it is continue the fight, submit to the process, be diligent with what Dr's tell you. You can get through it, regardless of severity. You are

Paul

I will never let GVHD overcome me I will continue to live my life to the fullest and Bless my Doctors who have given me the gift of life. My faith in God and my family bless and allow us to thrive. Never give up always look to the

Carol

What inspires me? If I fought this hard to stay alive, I am not going to settle. I will laugh as much as possible along the way. I will always push the boundaries of what's possible.

Kayla

I have the privilege of taking care of transplant patients, including patients with GVHD.

Tabatha

Stay strong! We are warriors! God loves you!

Evelyn

IM BLESSED to see another day.

Frank

These words have helped me.

William

Keep fighting to keep yourself strong.

Alan

I pray that everyone fighting this has the best outcome possible.

Angie

GVHD gives us hope and perspective for the rough days that better days will be ahead. Just keep fighting and never ever give up!!

Brad

I'm sharing a poem that expresses the feeling of having GVHD, as a result of a stem cell transplant with my brother as my donor:

Kristine

The annoyance of GVHD comes and goes, but the beauty of life and all that is before me is what I live for. Peace and blessings, you can do this too!!

Christine

Find the good in every day, and keep smiling. As my donor sister says, smiling is the best.

Patti

Thankfully, I have a loving, supportive family and community. Grateful to be celebrating another year post-transplant.

Gregg

Life. This is the one life we get. We have to fight for it. Since birth really. Don’t give up. I have wanted to so many times. We can beat this. Enjoy life when you can. Laugh. Love. Dance and sing. Do it all!

John

It is hard to imagine this when you are fighting the beast every day, but someday you will have to remind yourself to stop and smell the coffee and not get so wrapped up in the rat race of life. Remember to thank your caregivers

Kimberly (Mother)

I want him to be a normal child one day.

Helene, BMT physician from Belgium

With all my respect for the difficulties GvhD patients face despite our best efforts to help.

Street art from Belgium

Wayne

Strength doesn't come from overcoming what you can do, it comes from overcoming the things you once thought you couldn't!

Becky

I fight GVHD for my husband, family and for others like me.

Morgan

It gets better... Things will get better.

Renee

Looking forward to the time when I no longer fear GVHD because it has not come back!

Ossium Health

We're inspired by today's patients to help make allogeneic BMT a fundamentally safer procedure for future patients.

Dawn

Watch Dawn's video to hear words of hope!

Jullian

I hope that a cure can be found one day and that we can all dance in celebration of a cure!

Steve

GVHD is an inconvenience but I am alive.

Rick

My message of hope is to never give up....

The Rehab Staff

The Rehab Staff at Stanford Health Care are fighting alongside our patients and families.

Lisa

Thank goodness, I have the best team of professionals handling every aspect of my GVHD.

Danielle

Even with all my GVHD, we are grateful for our lives and all we are blessed with.

Laurie

Conquer GVHD!

Ingrid

Jessa against GVHD #proud #bettertogether

Kathy

Feeling thankful for having mild GVHD and hopeful that my MDS friends find treatments that help.

Amelia

I wish continued improvement and hope for all the other survivors out there

University Hospitals Leuven, Belgium

We are stronger together!

Angela

Hopefully, in the near future, there will be amazing advances in medicine to ensure that nobody has to deal with this in the future!

Michele

I support gvhd awareness because I am a patient experiencing this disease and there are not enough doctors around who understand it and what it can do to a body. There is also no funding available, that I am aware of, to support

Millie

My daughter has been a GVHD patient with ongoing changing symptoms which are not easily diagnosed or treated. I hope, with awareness, some light will be shed on all those in need who are suffering with this little-recognized

Kash

Hello, in honor of my 22 year old son Kash, who had a BMT 2 years ago and is dealing with some GVHD, our family decided to sport our bracelets all week and we even managed to take a few pics in support of him and all of those

ECP has helped me, but I need to drive 3 hours each way to get it

My mom has to travel every week to Boston, MA from Albany, NY (approx. 3 hours) to get extracorporal photopheresis (ECP), which is a proven treatment for chronic GVHD and has been a tremendous help with my mom's symptoms.

Peter

Both my brother and I suffered the consequences of lymphoma during the past seven years. We were both blessed with the positive outcome of medical treatments that eradicated the cancer. I had an autologous stem cell transplant and

Jim

At one point in my 31-year survival of multiple myeloma (which has a 5 year average survival), the oncologist told me nothing was left, I should go to a hospice. I refused, instead electing for an allo transplant. The allo and an

Nancy

We all have a different journey and the journey is constantly changing with GVHD. With GVHD, sometimes it is here for the long haul while other times GVHD makes a strong, short appearance. Either way, just take it one day at a

Pat

After running a group for transplant survivors who had moderate to severe GVHD, I support this day 100%. A brave, resilient group of people who deal with daily stress with grace and forward-thinking.

Stanford Health Care

Together against GVHD

GVHD patient

Thumbs Up from Belgium

Nurses from Penn State Hershey Medical Center

Michele

Lab worker

Together against GVHD

University Hospitals Leuven, Belgium

Together we continue to look for preventive measures to rule out GVHD and treat the side effects in those already affected.

Belgian BMT Team

We are stronger together.

Jennifer J

Hello! I have experienced GVHD and offer my support to others who are traveling this path. Although I was forewarned before my transplant that there was a good chance that I would experience GVHD, I was mostly focused on trying to

Stanford BMT Rehab Services

Diane

Hi. My name is Diane. And I just wanted to tell anybody that’s reading this that I am a friend of somebody that has GVHD. He recently had a bone marrow transplant a few months ago. They were very much aware of all the

Marilyn

My sweetheart has had GVHD for 5-6 years after a stem cell transplant. He has been on trials from Dana-Farber in Boston to NIH. His full time job is to beat it. He continues to ride his bike, walk and stay positive. He is a

Erica

My husband is in thankfully two years in remission from acute lymphoblastic leukemia due to a life-saving stem cell transplant. Our family is grateful for this time with him, but GVHD of the lungs and joints has left him quite

Joan

My doctor prescribed physical therapy and medications that decreased my GVHD symptoms. I am grateful.

Jennifer

I have been an oncology social worker for over 25 years. I wear this bracelet in honor of all those I have met suffering with this disease. I wear it to raise awareness for proper treatment and funding for new research to battle

Dr. Helene S.

GVHD is like a box of Belgian chocolates...You never know what you're gonna get. Let's team up to improve the lives of GVHD patients

Paula M.

I live with the challenges of GVHD after a bone marrow transplant in 2018. At times it can actually feel worse than my initial diagnosis of AML. I have a wonderful team of doctors thru the University of Michigan. They are very

Joanna

My husband and I agreed that we needed to keep laughing whenever we could! We often had to work to find food that was palatable since GvHD made a mess of my entire GI tract. This was a silly celebration of a meal that worked! Our

Valerie

Hello! I was reading your stories and have my own to share which I hope will inspire others. Even though I had a rough road after transplant and became disabled by lung GVHD, I found the power of art and humor for healing along

Barbara

I want those who are suffering with GVHD to have HOPE. I am 5+ years post transplant and during year one I had skin GVHD a couple of times. Although more mild than organ or eye GVHD or some others, it was really painful and I

David

I was first diagnosed with MDS about 4 years ago and went through a donor stem cell transplant. It was a rough year-and-a-half living in a virtual bubble, with constant blood transfusions, profound weakness, hair loss, temporary

Sharon

Progress for GVHD is so painstakingly slow. Even more frustrating is that the medical community does such a poor job of preparing transplant patients for cGVHD. This is especially true for vaginal GVHD. Women continue to suffer

Sue S.

As a caregiver (wife) of a GVHD patient, I found support and hope in the GVHD caregiver’s support group offered through BMTInfonet.

Millie

Linda

We get it! It’s complicated and everyone is different. Know that there is support and help. But more needs to be done. 5-year GVHD survivor.

John

I am inspired to continue fighting so that I can take care of my family and loving wife and see my children grow.

Kate

I support GVHD patients because I struggled with GVHD for 3 years after my transplant. It wasn't easy but I got through it and I encourage anyone with GVH to just keep moving forward.

Tabatha

From a 15-year stem cell transplant survivor, we all go through our own trials with GVHD, unfortunately some worse than others! But together we can get through anything! Keep smiling! You are stronger than you know! God bless each

Deborah

Don’t give up! Everyone responds differently to treatments. Work with your doctor to try different things that work for you. Now (fall 2022) down to Jakafi .5 every other day

Susan P.

Seek out positive people in your life, find activities that make you happy or feel productive, and build exercise into your day. You've got this!

Carolyn

So Ironic that February 17th is the 1st ever GVHD Awareness Day. It will be my son, Dylan's 31st birthday. Diagnosed at age 9 with osteosarcoma enduring the loss of his leg. Three years later with myelodysplasia. Stem cell

Brave Patient from Belgium

Another brave patient from Belgium!!

Duke Adult Blood Cancer Center

Alan

Even though my beautiful wife lost her battle with GVHD I will always support the cause. I pray that someday there will be a way to stop this disease that gets in the way of a life saving treatment. For you that are fighting this

Kelly

Keep in mind that a little (or a lot of) GVHD may mean the donor cells will be attacking any residual cancer cells you may have, and you may have a lesser risk of the cancer returning. I hope that gives you some comfort.

Emily and Korey

We care!

Dawn

Even with all my GVHD, we are grateful for our lives and all we are blessed with.

Watch the video from Belgium

Showing Support for those with GVHD

I Support Tabatha

Richard Rowell

I continue to fight for my family, friends, and work colleagues to continue to find better days ahead and to become more of a human being again since being diagnosed with Acute Myeloid Leukemia in 2021 and having a Bone Marrow

Douglas

I have had GVHD since my bone marrow transplant September 2012. I am 10 years old with my new chance of being on earth, 55 in all. I feel accountable for this time, which could be a negative thing, since I am less focused and

Paula O

I have been dealing with GVHD for 5+yrs and at times it has it’s challenges, but I continue to stay active as possible, I try to stay as positive as possible and continue to live as normal a life as possible. Stay Strong

Wearing a wristband to support GVHD patients