As some of you may already know, this year has been incredibly challenging for my sister and her family. In 2012 David was diagnosed with Epithelioid hemangioendothelioma (EHE), a very rare form of cancer, that grows from the cells that make up the blood vessels. This cancer can occur anywhere in the body with the most common sites being the liver and lungs. David’s cancer is in both Lungs and liver, for the last eight years it has remained dormant. That is, until January of 2020, when David’s cancer became aggressive at an alarming rate. The EHE spread to his spine and the pleural lining of his right lung, causing fluid to build increasingly. David and his wife Mary learned EHE in the pleura/pleural lining is one of the most challenging locations.
What started as a cough and shortness of breath in January ended in a complete lost of his right lung by August. After multiple extensive surgeries month after month; in an effort to save his right lung; it collapsed for the third and final time in October. The outcome could not be reversed, leaving David with only his left lung. Pleural effusion is his lung lining remained the most concerning. Once David was recovered well enough from his surgeries an aggressive chemo treatment was needed for any chance of surviving. A full cycle takes 3 weeks to complete. Sadly, after only one cycle, David contracted a deadly infection leaving him hospitalized for 3 weeks in the Boston hospital, causing him to pause any further treatment.
Within a short period of time it became desperately clear that time was of the essence, and David and Mary were left to make a increasingly difficult decision. It was evident that the combo of David’s plural catheter device and chemo treatment was the cause for his infection. Infectious disease Doctors warned that restarting treatment before his infection was contained came with many risks. However his oncology team of doctors felt he did not have the luxury of time to wait the six to eight week period before restarting treatment. The two of them made the decision to return home to restart treatment. David had a port inserted before leaving and Once discharged and home Mary administered his antibiotic in it 3 times a day. After only one week of being home Davids health hadn’t improved and was too ill to start treatment. Another trip to the Boston ED ended with a realization he had become resistant to this antibiotic. Shortly after starting a new one he was ready to resume chemo. He was being closely monitored by his thoracic and infectious disease drs in Boston, requiring weekly trips. A few weeks in David final started to look and feel better. He had his first weekend in months of non-emergency room visits! Things we’re finally looking up! His doctors we’re happy with his progress and said he would need to complete six cycles of chemo and they would get more imaging. Unfortunately, David again was only able to complete one cycle before running into more complications. Thanksgiving Day he began coughing up blood which progressed to increasingly debilitating shortness of breath. Within days he had been re-admitted.
New scans show this time the issue was in his left lung, the only surviving lung he has. This was a huge devastating blow to both David and Mary. He’s currently being evaluated and monitored at BWH in Boston.
He’s relying on oxygen and treated with steroids. Davids case is a very complicated one, and although he has the best team of Doctors stemming from Maine, Boston, and New York, too little is still unknown about his type of cancer. As his doctors are working hard to get to the bottom of this new prognosis, more devastating news was told to them. It appears he may have what they refer to as chronic pneumonitis. The are lead to believe it’s a direct side effect from one of the chemotherapy drugs. There is also reason for concern that this may actually be the EHE advancing. Or a combination of both.
Meanwhile, because life never pauses when your worlds falling apart, Mary is working hard to balance everything else being thrown at the family, and it’s a lot for just one person to hold together. Over the summer their dog Dakota began falling ill. After many vet visits and failed treatments a specialist has confirmed Dakota will need $2k in testing (this is in addition to the $1200 already paid to get him better) to determine a diagnosis in order to get the treatment he’ll need to get healthy.
Their family car is how Mary has commuted David to all of his appts, many of which are in Boston. Because his cancer is so rare and how quickly things progressed, getting David to a facility that had the ability to treat his complicated case was a must. Within the last 5 months they’ve put over 50k miles traveling back and forth. Not to mention COVID, as if this family didn’t need more hurtles. David has had countless hospital stays since July. Each being in Boston. Mary has to pay for hotel rooms and even in some instances has had stay and sleep in her car. This is due to the strict visitation restrictions the hospital has. With Covid spiking, visiting has been limited to two hours a day. Their three year old daughter who, as you can imagine, has had a horrible time adjusting to having her parents up and vanish to another unexpected emergency room visit, that always ends with her dad being admitted. Combine this along with the reality that Mary has a full time job, and as much as they have been great about her taking time off, she’s maxed on vacation and personal time. Mary now commutes back-and-forth to be with David in the hospital. As you can imagine putting that many miles on a vehicle has caused lots of wear and tear. More unexpected maintenance is being required before getting a inspection sticker. Another hefty bill to try and figure out how to pay and this right before Christmas.
For months we have all been praying for a miracle that will improve Davids health so he can enjoy many more years spent together with Mary, their children, and the rest of their family and friends. We continue to pray for this and ask for your prayers as well. We really need your support. If at all possible, please help this family with their unexpected expenses and financial difficulties by saying a prayer, making a donation via gofundme, dropping off home cooked meals, donating winter gear for their 3 year old daughter (4T in clothing, size 10 in toddler shoes), and / or sharing their story with your community so more and more people can help us support them.
Thank you from the bottom of our hearts. We appreciate and love all of you so very much.
- Leah Bayley
- Julie Libby
- Jennifer Boyce Boyce
Organizer and beneficiary
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