Ben’s Story

Site created on January 2, 2020



Update from original post:

As most of you know, Ben got a new heart on Thursday!  Everything has happened so fast, but Cheri has wonderfully detailed heartfelt posts of each day of Ben's ups and downs, and now recovery from a Heart Transplant!  He is amazing, and we are all in awe of his ability to take one day at a time on this path that barely started 30 days ago.  Cheri and Debbie have stayed strong for their little guy, and even as facing the the hardest challenges of their lives, have proved to be STRONG WOMEN who demonstrate everything I would want to instill in younger generations.  They are compassionate, loving, caring, and considerate, while all the while keeping strong and in control for Ben in deaths eye.  Cheri is a survivor who didn't crawl in a corner when she felt all the walls closing in, instead she hit everything head-on, and guess what...now she's playing UNO with her little survivor, Ben (who still seems to be winning:))!!!  Now their new journey begins!  This new normal is going to be chronicled by Cheri every day, when she can keep up the energy after a long day of learning her new life with Ben!  

We want to say thank you to everyone that has kept this precious family in their prayers and for all the love sent their way.  Cheri, Susana, or I will update when they are ready to receive gifts and visitors, as Ben becomes stronger and they find an apartment in Charlottesville at discharge from the hospital.  Charlottesville will be their new home for the near future, so we will continue to send love their way and find ways to support Cheri financially and through fundraisers.   

Thank you to our new "Ben" family!

Please let us know if you would like to support Susana's fundraiser (but only for local peeps since it's $30 prepared dinner of shells hand delivered by Susana and to be thrown in the oven) or if you would like to donate to Cheri's go fund page which is under "ways to help" on the menu of this page (or below)!  We've got to help this family through this unimaginable life changing event, we want them back in our hometown, Alexandria!!!  

❤️❤️Tasha & Susana

https://www.gofundme.com/f/1uvv1tx8g0?utm_source=customer&utm_medium=copy_link-tip&utm_campaign=p_cp+share-sheet

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January 2, 2020

Please join us in following the story of Cheri (mom), Debbie (grandma), and Ben (8).  Their life in the last 30 days has been thrown into turmoil with what started as a bacterial infection, and has now lead to a wait for Ben to be healthy so he can get a heart transplant.  So many friends and family have been asking for updates and how to help, so we’re hoping this can be a starting point for our “Cheri and Ben” community to band together and offer our support in this life-altering situation.  Their life is minute-to-minute, hour-to-hour, as fear of infection and the hope of stable vitals consume every moment of this dear families existence.  

Ben is living in the pediatric heart unit at UVA, and mom, when not at the hospital, is sleeping at the Ronald McDonald House, a short drive away.  A typical day involves mom bedside with short breaks for buying coffee or food in the cafeteria on the main floor.  Right now we would love to continue to send Ben e-cards, video messages, physical cards, all the prayers and good thoughts, but we would also like to support Cheri monetarily so she can focus on Ben and on being his rock.  As we learn more of how we can offer Cheri support in Charlottesville, updates will be added.  At this point her life is staying bedside and waiting each day for tests to report Ben’s current status.  

But more about Ben!  He is an energetic, funny, and charming 8 year old who is waiting for a heart donor.  Everyone he meets falls in love with his amazing personality! He loves WWE wrestling, loves music, and is a black belt!  He is in 3rdgrade at Groveton Elementary in Alexandria VA, and have a I mentioned…he is a bundle of energy!  He lives with his mom, grandmother, and Minnie and Molly his guinea pigs. Mom works for the government in the United States Marshals Service, and has a wonderfully supportive team at work. 

Let’s all gather together and show our support for this amazing family! 

Please sign up for updates! We will keep this site updated with the latest updates from Cheri! 




Newest Update

Journal entry by Tasha Malhotra

Results from Ben’s biopsy showed a mild amount of inflammation.  The pathologist called it a 1R, but the cardiology team says the good news is that at 3 months post-transplant, they don’t tend to worry as much about that.  After three months, it’s their protocol not to treat with additional medicine, as rejection of this nature is unlikely to progress further (and often resolves on its own). So that being said, the biopsy was reassuring and they don’t need to do anything additional. Their plan is that Ben’s next biopsy will be in January 2021 unless he has any concerning symptoms or findings on an echo cardio gram between now and then.  We will continue his clinic visits in Charlottesville every two weeks to monitor his blood levels and modify his meds accordingly. 

His blood levels were perfect and they removed 1/2 dose of one of his meds. More should fall off in July which will be 6 months! And, the Epstein Barr Virus results came back negative again. 

The nurses and doctors are also a bad influence!! They gave Ben syringes of sterile water to shoot and he got two of his doctors!!  These trips wear us out and the heavy rains didn’t help!! 

#Onedayatatime #walkbyfaith #heartwarriror
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