According to Facebook memories, two years ago today madforlife.org went live to raise the funds my mother would need for her post transplant medications. I was in Pittsburgh at the time and distinctly remember sitting with my parents at lunch - the 3 of us all glued to our phones because we were continuously getting notifications that friends and family were commenting, donating and sharing. We laughed at that fact that we were “those people” - three of us at a table, staring at our screens.
It seems like yesterday, but the last 2 ½ years or so have been a rollercoaster.
Mad for Life was, in many ways, our family’s lifeline. The outpouring of support while Mom waited for her double lung transplant and then waited to come back home was incredible and kept us all going. This may seem like a strange analogy, but it was almost like a living wake. While the medications that kept her new-to-her lungs working were ultimately too much for mom’s body, they gave us extra time with her. But when we did lose her, everything people said to us about her was exactly what they had said to our family in their phone calls, emails, texts, and messages during that waiting time. That was truly one of my bright points in all of this. Mom knew how much she was loved.
And soon - because of the incredible generosity of family and friends - the Scleroderma Foundation will get a sizable donation from the Mad for Life Fund. While it will never be the same as having Mom here with us, we’re so grateful that it is possible that advances can be made in Scleroderma research because of our friends and family… because of her.
As many of you know today is the first anniversary of Mad’s transplant surgery. Our thoughts and prayers go out to the donor’s family and the wonderful staff at UPMC. Mad was so grateful to get home for Caroline’s arrival and to spend a wonderful summer with her family. We would like to thank Drs. Simms and Farber at Boston Medical Center who were dedicated to Mad’s care for many years. Of course, special thanks to Terry and Barb Peterson for their generosity, love and support. To all of Mad’s many friends and supporters - THANK YOU! We will be forever grateful. Jim & family
Those who knew Madeline know that she and Jim enjoyed visiting Aruba each January with a large group of close friends.
As Jim was recently preparing for this annual trip, he came across these pictures. He believes they were taken in 1996 during their first Aruban vacation.
Madeline A. (Boyle) Reilly, 68, of Narragansett, passed away on Monday, October 30, 2017 at Brigham and Women’s Hospital in Boston. She was the beloved wife of James H. Reilly, III for 45 years.
Born in Providence, she was the daughter of the late Walter V. and Bernadette I. (San Souci) Boyle.
Madeline was a 1967 graduate of St. Francis Xavier Academy and a 1971 graduate of Mt. St. Joseph’s College. She was an elementary school teacher for five years in the Providence Public Schools before undertaking her most important role as mother. Once her children were older, Madeline resumed her career as a pre-school teacher at St. Paul’s Nursery School in Wickford for 18 years. Madeline’s favorite times were spent with her cherished family and friends, particularly on the beach at Bonnet Shores.
In addition to her husband, Jim, Madeline is survived by her daughter, Colleen Boisclair and her husband, Gerard, of East Greenwich, her son, Michael and his wife, Megan, of North Kingstown; the lights of her life, her grandchildren, John (Jack), Daniel, Matthew, and Caroline Reilly; her brother, Walter V. Boyle, III of Narragansett; her aunt, Marguerite Boyle of East Greenwich; and many family and friends who so loved her.
A Mass of Christian Burial will be celebrated Monday, November 6 at 10:30 am, in St. Veronica Chapel, 1035 Boston Neck Road, Narragansett. Burial will follow at RI Veterans Memorial Cemetery, 301 South County Trail, Exeter. Visiting hours will be held Sunday, November 5 from 4:00-7:00 pm in the Russell J. Boyle and Son Funeral Home, 142 Centerville Road, Warwick.
In lieu of flowers, donations to the Scleroderma Foundation, 300 Rosewood Drive, Suite 105, Danvers, MA 01923 in her memory would be appreciated. Her family also requests that you consider becoming an organ donor in Madeline’s memory.
A wake to remember Madeline will be held Sunday, November 5, 2017 from 4pm - 7pm at Russell J. Boyle & Son Funeral Home in Warwick, Rhode Island.
Boyle Funeral Home
142 Centerville Rd
Warwick, RI 02886
A Mass of Christian Burial to celebrate Madeline's life will be held on Monday, November 6, 2017 at 10:30am at St. Veronica's Chapel in Narragansett, Rhode Island.
St. Veronica Chapel
1035 Boston Neck Rd
Narragansett, RI 02882
For Madeline's family and friends that are unable to join us, her funeral mass will be broadcast online so you can watch and be there with us in spirit. You can access the live stream by visiting www.stthomasmoreri.org and clicking on the "St. Veronica Mass: LIVE" button.
This afternoon, Madeline Anne Boyle Reilly finally found the comfort and peace she so rightfully deserved with Jim, Colleen, Michael, Walter, and Janet by her side.
She will be greatly missed, but will remain with us forever.
We will post further details when they are available.
The Reilly and Boyle families are grateful for your continued love, support, and prayers.
Thank you for all of your continuing thoughts and prayers. They mean so much and really do help.
Following Madeline’s surgeries on Sunday and Tuesday of last week, she had a great day on Wednesday. She was taken off of the ventilator, was sitting up in bed and was conversational. Unfortunately, on Thursday she became listless and confused. Friday she was largely unresponsive and was placed back on the ventilator that night due to her reduced mental state. She was also jaundiced and her body was retaining fluids once again. Multiple tests were performed by various teams, but they were still unable to determine the underlying cause.
Saturday evening Madeline’s picc line was removed and a central line was inserted through her neck. A CT scan indicated a third perforation in Mad’s small intestine. She was brought into the OR for emergency surgery early Sunday afternoon which lasted about 3 hours. The surgeons excised a large perforation in the small intestine, not in the area of the repairs made earlier in the week. When Mad got back to ICU later this afternoon her color was much improved, her eyes were open and she was responsive for the first time in 3 days.
Madeline’s daughter-in-law, Megan, had been in contact with two of the priests from her time at Boston College. They visited with Jim, Colleen, and Mike while Mad was in surgery. One was able to stay until Madeline’s surgery was completed and administered the anointing of the sick
Madeline is not out of the woods yet, but her family is very hopeful. The doctors feel that one or a combination of her transplant medications are probably causing the gastrointestinal problems and continue their search for the cause. The hepatology and renal teams are also monitoring closely but hopefully Mad’s liver and kidneys will begin to function normally now that the intestine has been repaired.
So much has happened since the last blog.
Madeline had a smooth recuperation from her hip replacement this summer. She was committed to her physical therapy and quickly graduated from a walker to a cane to walking short distances on her own. While she didn’t spend the summer jumping waves with her grandsons, she watched from above while holding her brand new granddaughter.
On August 19th, Jim and Mad celebrated their 45th wedding anniversary. The celebration continued the following week when their entire family joined them on Block Island - one of Madeline’s favorite places and somewhere they both missed during their time in Pittsburgh.
Jim and Mad had a short, scheduled visit to Pittsburgh during the first week of August for routine follow-up appointments. A bronchoscopy showed that there was mycobacterium in Madeline’s lungs. The doctors were waiting for further testing to determine the exact strain of bacteria so they would know how to treat it. In the meantime, Madeline started to feel a bit weak, had lost her appetite, and was experiencing some gastrointestinal issues.
On Monday, September 18th, Madeline went for her weekly blood tests. Two hours later, she received a call from UPMC. The bloodwork indicated that Madeline’s potassium levels were elevated so the team in Pittsburgh asked Madeline to go directly to the local ER. Madeline was admitted that day at South County Hospital and the doctors there were in constant communication with the team at UPMC. It was quickly decided that it was best if Madeline were in Pittsburgh, so in the middle of the night on Tuesday into Wednesday, Jim and Mad were flown via medevac to Pittsburgh.
Once in Pittsburgh, Madeline was diagnosed with three large ulcers which were causing her GI problems. The medical team believed that they were caused by some of Mad’s medications, so those were swapped for other medications. She also began treatment for the bacteria in her lungs. Because the treatment will last for months and is administered intravenously, Madeline received a picc line in her upper arm.
Madeline made good, but slow, progress. She underwent another bronchoscopy last week that showed no rejection in her lungs. Once those results were back, Mad, Jim, and the medical team began planning for Madeline’s discharge on Saturday morning with a flight home to New England early that afternoon. Jim and Mad could not wait to get home to their family!
Madeline awoke on Saturday, October 14th with slight stomach pains and swollen feet. Because of this, UPMC did some X-rays and additional blood tests prior to releasing her just to make sure everything was OK. By the time Mad and Jim landed in Boston, her feet and legs had swollen considerably and she was feeling sick to her stomach. She thought that maybe she hadn't had enough to eat for breakfast with her meds.
Once she returned home, her pain had increased considerably and the swelling hadn't gone down at all. Madeline was brought back to South County Hospital. The team there was once again in contact with her team at UPMC, gave her pain meds and administered the same blood tests and x-rays that had been done in the morning for a comparison. She was admitted later that night.
However, around midnight, Jim received a phone call that her condition had deteriorated and that Mad was being transported to Rhode Island Hospital.. Once there, additional tests indicated that Madeline’s intestine was perforated. The transplant team at UPMC was consulted. While RIH could have done the necessary surgery, they didn't have the support of a pulmonary transplant team, so both hospitals felt it was best if Madeline were at a transplant center in Boston.
At about 7 am Mad & Jim arrived at Brigham & Women's - the 4th hospital in less than 24 hours - that has to be a record! She underwent surgery to repair the perforation enough to stabilize her. The surgery went well, but because of the sedation she was under, Madeline was put on a ventilator and a breathing tube. Her stomach was left open, and on Tuesday the surgical team was able to completely repair her intestine. Once that surgery was completed, Madeline was weaned off the vent and her breathing tube was removed. She is currently being fed through a nasal tube which hopefully will be removed tomorrow.
Madeline is being closely monitored by members of the pulmonary, surgical, and infectious disease teams at Brigham & Womens. All of those teams are working closely together and in conjunction with the teams at UPMC.
All along, Madeline has continually said, "I should've started a book a long time ago!" She certainly has a few new chapters of material!
Madeline is on the road to recovery.
On Wednesday, Madeline was moved to inpatient rehab. It was originally thought that Madeline would do her rehabilitation at UPMC Montefiore -- where she spent some time in the spring after her transplant. However, there were no beds available to her there so she was moved to another inpatient rehabilitation facility within the UPMC consortium. This new facility is outside of the city and much closer to the Petersons -- who have been kind enough to take a Jim in once again.
The next day, Thursday, June 8th, Jim & Mad welcomed their fourth grandchild and first granddaughter, Caroline Grace Reilly. Caroline was born at 5:04 am at 8 lbs, 2 oz and 21.5+ inches long with a headfull of dark hair. Meg & Caroline are both doing well and returned home today -- providing extra incentive for Mad to get home ASAP!!!
As expected, Mad has been putting forth her very best effort during her twice-daily PT & OT sessions which have included climbing steps, using a walker to move down a hallway, and going up a curb with the walker.
Madeline expects to be discharged Tuesday afternoon and she and Jim will then fly home on Wednesday afternoon to meet and snuggle Caroline! Jim and Mad are also looking forward to seeing their extended family next Saturday as they celebrate the wedding of their niece Kaitlin and soon-to-be-nephew Brian.
Madeline & Jim left Thursday morning for a quick 2 day trip back to Pittsburgh for some follow-up appointments and tests. These trips will be part of their new routine every other month for the next two years. After that, they will continue to make the trips with less frequency.
Unfortunately, Madeline fell in the Philadelphia airport during a layover on the way to Pittsburgh. Ever the trooper, she boarded the plane to continue the journey. By the time the plane landed, Mad was unable to put any weight on her left leg. However, she continued with her pulmonary appointments (which went well!) before heading to the ER where x-rays confirmed that she had broken her left hip.
On Friday morning, rather than undergoing a bronchoscopy, as previously scheduled to test for rejection, Madeline had a partial hip replacement at UPMC.
Saturday she she was able to move to a chair and today she took a few steps with a walker. The bronchoscopy is now scheduled for Tuesday and Madeline will have inpatient rehabilitation for about a week or two at UPMC -- back to her old stomping grounds where she spent a week and a half in February.
As always, Madeline continues to have a positive attitude and is confident that she'll be back home in no time at all! She's ready to meet her granddaughter-- who could arrive any day now -- and celebrate her neice's wedding on the 17th. All of your thoughts and prayers have helped in the past and we know they'll help on this new, unexpected journey!
As often as possible, we'll try to update this page to let you know how Madeline is doing and where she is in her fight for new lungs. Visit often!