Giving Hope to Holly

2/10/19 Update: Unfortunately, Holly continues to struggle to find a treatment that will successfully get her back on her feet again and feeling well. I am updating this online campaign with a picture of how we all would like to see Holly - smiling and happy. I, Holly and her family all sincerely appreciate the support she has received so far. It is thanks to the generosity of many that her days are brighter. Now that a new insurance year has started, she is now in a new year of deductibles. Contributions to her benefit are still and needed and very much appreciated!

With my sincere thanks,

My name is Sarah Stanley and I am fortunate to have known Holly Van de Graaf Savage since I was eleven and she was two.  As luck and fate would have it, I was Holly's babysitter and saw her most every day for the three years that I lived in Houston, TX.  Not many good things came out of living in Houston, but meeting the Van de Graafs and developing bonds with my now 'adopted family' makes me feel blessed to have resided there.

Holly and her husband Brian have been married for 18 years and have three awesome kids: Felicity (14), Francesca (my Goddaughter who is 12), and Gerrit (10).  Brian is a full-time member and employee of the Massachusetts Air National Guard and 24-year veteran of the Army and Air Force. 

She has had a year full of challenges and unexpected diagnoses and continues to maintain the most positive, optimistic, and cheerful outlook despite all that she is dealing with and navigating through. She doesn’t complain or ask "why me” or dwell on the negative.  She pushes through pain and adversity and just never stops.

Holly suffered a fall last year and because of twelve knee surgeries that all stemmed from a very bad ski accident as a teenager, unfortunately her surgeon told her she had nothing left in her knee that was strong enough or healthy enough to repair.  She wanted more than anything to have an active life with her husband and children so she underwent a total knee replacement in November of 2017.   The recovery was painful and frustratingly slow, and the surgeon and physical therapist could not understand why she was not progressing despite all her hard work and effort put into PT.  Her left leg was profoundly weak, unstable and she was unable to hold her weight when she attempted to walk. 

Months after the surgery, she was still on crutches with a leg that gave out every time she took a step. After visiting many doctors and undergoing every possible test, they concluded she had suffered significant femoral nerve damage from the femoral nerve block that had been given to her just before the surgery.  She has almost complete quadriceps paralysis in her left leg. She was told there is no specific treatment or cure she had to be patient and hope the nerve would heal and function would return with time.  Nerve injuries can take up to two years to heal and for nerves to regenerate.  Then in March of this year, she was let go from her job.  She had been out of work since the surgery and her job had been held by her employer, but she now knew after the diagnosis she would be unable to return to her job any time in the near future.  As the manager of a residential carpet cleaning business part of her job required her to take in and return area rugs to customers who dropped them off, and she was no longer able to lift and carry heavy area rugs for customers.

Shortly after losing her job she saw her primary care doctor who ordered routine blood work that she was due for.  The day after she had the blood work her doctor called and said she needed to head back to the lab that day and have the blood work repeated.  Her white blood cell count was off the charts and they had to determine if it was a mistake by the lab in the reading.  The second round of blood work showed an even higher white blood cell count.  Her doctor worried that she had an infection in her new knee and sent her to her orthopedic surgeon for her knee to be aspirated to determine if there was an infection. The knee aspiration did not show any infection or abnormalities.  While it was good news that there was no infection they still did not know what the cause of the high white blood cell count was only that it kept rising every time she was tested.    

Holly has a condition called May-Thurner syndrome which predisposes you to blood clots.  She has had several bouts with DVTs and one case of a pulmonary embolism so she regularly sees a hematologist at Brigham and Women’s Hospital in Boston who closely monitors her. Her primary care doctor told her she had to see her hematologist as soon as possible to see if she could get to the bottom of what was causing the high white blood cell count. The hematologist told Holly that while the high white blood cell count was very concerning, it was nothing like a leukemia causing it.  She said out of an abundance of caution she was running some (very expensive) blood tests just to confirm it was not leukemia.  Three days later, on May 26th, it was Holly’s 40th birthday, and while she was left uncertain of what was going on, at least her worst fears had been rested and she could enjoy her birthday believing she did not have cancer. 

Then in the beginning of June, she received a call from her hematologist. Her hematologist apologized profusely and said despite her certainty that she did not have leukemia, she had been wrong. The blood tests confirmed she had Chronic Myelogenous Leukemia and explained it is a rare type of leukemia with only about 5,000 cases diagnosed a year.  While is not curable, it is treatable but she would likely have it the rest of her life.  The call from the hematologist had come on a Friday afternoon right after picking her kids up from school as she was driving home surrounded by of all three of her children.  In her typical calm and thoughtful nature, Holly took the call never changing the tone of her voice or using any words so as to let on the nature of the call.  She knew immediately she would tell her kids later and she would tell them individually.  She needed to do everything possible to keep them from worrying as they had been told the previous week there was no need to worry Mommy did not have cancer.  Her hematologist told her that she would be immediately referring her to an oncologist at Dana Farber who only treats leukemia and the oncologist would be treating her from now on. 

What followed were many more blood tests, a bone marrow biopsy, and MRI at Dana Farber Cancer Institute.  She is being treated by an oncologist every two weeks at Dana Farber. She is receiving an oral chemotherapy that has many side effects that greatly impact her daily living, but hopefully the treatment is targeting the cancer and reducing her disease threshold. She will be having molecular testing in the next two weeks to determine how much of the disease the chemotherapy has killed followed by another bone marrow biopsy. 

All the while, Holly’s husband Brian is working three jobs in an effort to support the family while Holly continues to be out of work being treated for the leukemia and working intensively on her leg to hopefully restore the nerve function so she can one day walk normally again. My hope is to raise money for this wonderful family so that these funds can help relieve the financial burden of Holly being out of work, the many trips to Dana Farber in Boston, and all of the medical bills that have been accrued to date and continue to mount as they pay for her chemotherapy treatment.  With over $10,000 in coinsurance bills alone, if you are able to help with any amount, no amount is too small.   Thank you, in advance, for helping give financial hope to Holly.  She shouldn't have to worry about financial burdens when her health is the most important of all.
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Organizer and beneficiary

Sarah Mullavey Stanley 
Franklin, NH
Holly Savage 
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