A Day of Celebration and Thanksgiving

Last Saturday we had a beautiful celebration of Mom's life. It was poignant, heart-felt and emotional, but those who spoke certainly had us smiling, laughing, singing and even clapping our hands in joy as we remembered many wonderful stories about Mom. 

Dad, Katharine, Michael and I were so very grateful for the many people who attended, including many who had traveled far to be there.  Mom formed such close, authentic bonds with people throughout her life; it was so beautiful to be surrounded by all of her family and her many kindred spirits. The only regret of the day is that we wish we had more time to spend with each of those who came.

We were also very fortunate to have a talented member of the First Baptist congregation record the service and put it on You-tube.  The link to the recording is at: http://youtu.be/NlKbksw7vrI or you can search You Tube for A Service of Celebration & Thanksgiving for Denise Soares.

Of course a celebration of Mom would include talking about her life as "DeeDee". During the service, the grandchildren, grandnieces and nephews came forward and discussed with Pastor Don about what DeeDee had taught them about sand dollars - and then they broke open a sand dollar right there at church to release the sand dollar doves inside.

Photo of children with Pastor Don 

Photo of a successful opening of the sand dollar

Children each receive a sand dollar dove to take with them

Katharine's nine year-old daughter Graylin shares our mother's love of writing and poetry. She wrote a lovely poem for DeeDee and showed great poise reading it at the service.  

Photo of Graylin reading the poem

Someone asked if we could include here on the blog, and so here it is:


They’re giving it life

Just walking in a door
Will tell you
All you need to
Know.
You’ll be able
To tell
Who a person is
By their shelves,
Their collections,
What’s hidden in their nightstand drawers.

I know people with rooms full of books,
People who cover all space in collections.
There are people
Of the sea,
People of the air,
And people of their home
Then some people …
Are everything.
That was DeeDee.

I love the people
The ones who
Frolic and play.
Who live in the night sky,
And kiss the sun.
I know ones who
Collect the salty beach spray
And keep it in their hearts.
DeeDee did all of this.

A penny is worth more than one cent.
Every seashell and sand dollar
Has a story to tell
And few people see
The specialness,
The gift of unique life
In something, someone
So ordinary.
And then people who do
Can always live on,
For they caught love
In their own bare hands.

For those reading this by email, you can find the photos by going to followingdenise.blogspot.com

Mom's Service on Saturday

Dear Friends and Family,

As many of you know, Mom's memorial service will be this Saturday, April 5, at 11 am at First Baptist Church, 228 North Main Street, Fall River, MA.  We will have a reception afterwards in the church hall.

For those of you making your first visit to First Baptist Church, here is some additional information.  The church is on the corner of North Main Street and Pine Street, across the street from the Fall River YMCA.  The church does not have its own parking lot. There is street parking available as well as an office parking lot around the corner from the church at 181 Pine Street that is available on Saturdays for church parking.

We are very grateful for those of you planning to attend the service. Mom has friends and family across the country, and we completely understand that some of you are not able to be here on Saturday. We know you hold Mom and us in your hearts and prayers.

Mom's Service

Dear Family and Friends,

Thank you so much for all your kind words, stories and prayers.  In this past week, we have been really enjoying hearing about Mom in your letters and messages.

We wanted you to let you know that Mom's memorial service will be on Saturday, April 5, at 11 am at the First Baptist Church, 228 North Main Street, Fall River, MA.  We will have a reception afterwards in the church hall.

For those who are coming from out of town, we will be arranging room reservations at the Hampton Inn in nearby Westport, MA, 508-675-8500. Please wait until after March 17 to call for reservations.

Here is a brief write up about Mom that will run in the Fall River newspaper a week before her service.

With love and thanks, Mom's family

Pastor Denise Soebbing Soares, 68, of Tiverton, RI, passed away on March 8, 2014, after a courageous battle with pancreatic cancer. She was the beloved wife of Edward J. Soares.

Denise was born in Ipswich, MA, daughter of the late Marie Dunn Soebbing and the late Thomas J. Soebbing. Raised in Rochester, NY, she attended Our Lady of Mercy High School. An enthusiastic and bright student, she graduated from the College of New Rochelle with a BA in literature. There she met her loving husband Edward of forty-four years. They raised their family in Baldwin, NY. Denise nurtured in their children their love of learning, nature and family traditions.

After college, Denise worked as an in-house editor for several companies; as office administrator for several churches; and also ran her own handmade crafts business. At age 57, Denise entered Andover Newton Theological Seminary, MA. Denise was ordained an American Baptist minister, and felt blessed to be the pastor of Calvary United Presbyterian Church in Fall River, MA.

In addition to her husband, Denise will be greatly missed by her children, Christiana Jones and husband Jamie; Katharine Lucas and husband Chris; and Michael Soares and wife Jiff Martin. Her beloved grandchildren will fondly remember “DeeDee”: Graylin Lucas; Jackson, Sam and Juliet Jones; Elliot Rose and Robin Soares. She is also survived by her sisters Patricia Shields, Mary Ann Thomas, her brother Thomas Soebbing, and her nieces and nephews.

The memorial service celebrating her life will take place at the First Baptist Church, 228 North Main Street, Fall River, MA, on Saturday, April 5, 2014 at 11 am; reception to follow. In lieu of flowers, please direct donations to Dana Farber Cancer Institute, Adult Palliative Care Program, 450 Brookline Avenue, Boston, MA, 02215.

Final Journey and Blessing

With heavy hearts, we want to tell you that our wonderful Mom passed away on Saturday, March 8. Our hearts ache with a loss that we do not yet even fully comprehend, but we find comfort that she is free of her earthly burdens and can be her true beautiful and radiant self once again. As a dear friend said, heaven has gained a truly bright star.

The night before Mom's passed, one of Mom's beloved friends said a beautiful prayer as the family gathered around Mom.

"Guardian of the Galaxies,

Mother of the Universe,

Father of the Stars Beyond Counting,

may we rest in thee tonight."

We will celebrate Mom at a memorial church service at First Baptist Church of Fall River, MA, the church of her adult baptism and ordination.  The service will take place on Saturday, April 5, 2014, at 11 am.  The church is located at 228 North Main Street.

We are sorry that we are not able to call you and all of Mom's friends to personally share this difficult news. Thank you so much for holding Mom and us in your thoughts and prayers.

With love,

Ed, Christiana, Katharine and Michael


followingdenise.blogspot.com

Gathering Around

We are gathering around Mom, physically, emotionally and spiritually over the past few days. As the saying goes, we've laughed and we've cried.

On Monday, instead of getting the gastric tube she had been waiting for, the doctors felt she was pretty sick and perhaps had aspiration pneumonia. They told us to gather the family and be with her.  It did seem touch and go that night, and we were so grateful when several times she opened her eyes and talked to us. The next day she seemed a little stronger and we again thought we might be able to take her home soon. But yesterday she was weaker again, and we sat with her all through the day and night - waiting, watching, talking, sharing. Morning has dawned again and as I write this, she is enjoying the sunny view out her window. 

We have decided it is best for her to remain here. She has not talked about going home in awhile and she says what good care she is getting here. She loves the doctors and nurses, and she has become a favorite of theirs.

You are here with us. Some of you sent prayers and blessings to share with her, and Mom and all of us have loved them.  Each was was different, and each one touched Mom.  We picked up a bunch of mail being held at the post office and she had a pile of cards for us to read to her.

We've been watching in the room old home movies we recently had transferred to DVDs.  It's great for Mom and us to see Mom and Dad on their honeymoon and being with us as babies and young children. A wonderful life it's been.

In the last few days, Mom has shared amazing stores, interesting visions, and some really funny one liners. She said earnestly last night, "I'm ready, I'm ready, oh Lord, I'm ready." She and God are working out the details. 

Your Favorite Blessing

Mom's good friend from her church gave her these wonderful prayer cards with Bibles verses and prayers.  Tonight the four of us each read one aloud to her and we talked about what words and ideas jumped out at us.

We enjoyed doing it very much.  Mom really loved it.  We said we should do it again and select new blessings.  I thought it might be nice if Mom's friends and family sent Mom their favorite blessing, prayer, Bible verse, or poetry to share with her and us.  You can send it to dsoares5@cox.net.

Mom had a great weekend, but is having a really tough time tonight, struggling not to spit up bile.  I'm counting the minutes to the gastric tube is placed today.

One of the prayers enjoyed tonight from St. Thomas Aquinas:

Grant us o Lord the minds to know you, hearts to seek you, wisdom to find you, conduct to please you, faithful perseverance in waiting for you and a hope of finally embracing you. amen

Update on Mom

Mom is still at the hospital; she was moved to the Palliative Care floor where there is a tremendous team of caring medical staff and a quieter atmosphere than the surgical/trauma floor she was previously on. The doctors are trying to make her more comfortable and manage her symptoms so she can enter into a hospice program, either at a hospice residence or at Mom and Dad's home.  

To ease some of the pain and pressure, the doctors inserted a catheter that will be able to easily drain on a regular basis the fluid created by the tumors in abdomen. Due to the bowel obstruction, for the past two weeks Mom had an NG tube placed in her nose to drain her stomach and the tube was becoming very uncomfortable. The plan is that she will undergo one more procedure to insert a gastric drain which will have the same effect as the NG tube draining her stomach. This will allow Mom to have the comfort of drinking tea, broth, water and juice without the build up of pressure in her stomach and without the tube in her nose. This procedure is slated for Monday.

We had two really low days in the hospital last week. One day she was in a great deal of pain, and the following day she was very, very lethargic and not too responsive. The next morning when I went to her room before daybreak I was surprised to find her awake. I could immediately see she was feeling much better. She had another delightful nurse that morning and mom told her all about her sand dollar collection and broke open a sand dollar we had at the hospital to show the nurse the doves inside. In the company and embrace of her sisters, Mom cried about how fast things seem to be happening. She talked to Dad and us later that day, a heart-felt and heart-breaking talk, but it was good for all of us to have that talk. She was high spirits yesterday, feeling like she had a good day.

We will let you know if there are any other big changes and when she gets discharged from the hospital.  If the gastric drain is placed on Monday, I would think the earliest would be Wednesday.

Thanks to everyone for their blog comments, texts and emails. We read them to Mom all the time.  There has been a bit of delay with mail since mailing getting forwarded to Florida is now getting forwarded back to RI, and is on hold at the Rhode Island post office.

More about Mom

As we spend more time as the hospital, we see there are fewer medical options to provide long term help for Mom.  Yesterday they did place a third stent into her colon, but they were not able to place it where they wanted to.  The GI team said there was a small chance it would alleviate the obstruction, but it seemed more likely that the stents or future stents would not work.

Mom’s surgeon came to talk to her last night, and the rest of us were with her.  He spoke to her thoughtfully and gently about her situation.  He said that surgery to fix the bowel obstruction was a tough option because there were many downsides – it might not work, it would be very difficult to heal, new tumors could cause new obstructions.  With no chemo options available there was nothing to keep the cancer in check.  Mom said she was interested in having her remaining time be of the best quality that it could be. He said it could be a few weeks, it could be a few months, but gently suggested it would not be much time.

Mom was so very strong and amazing during the talk with the doctor.  She said this was not the news we had been hoping for, but in many ways it was not a surprise.  Mom talked about how grateful she was for this past year, how it had been such a gift to do special things, to spend time with friends and family, to enjoy life.  As I write this I don’t have enough mental or emotional capacity to find the right words or even remember her exact words to convey how inspiring Mom was and how helpful the doctor was to her and us.

We would like to bring her home to her Golden Pond House for hospice care, to watch her beloved pond, to be near her fireplace, to be with Dad and us. However, that is difficult to know the specifics at this time.  The doctor is weighing different options about whether to place some tubes to continually drain her fluids.  She is experiencing one of her intense pain episodes this morning, so the doctor's first priority is to manage her pain.  We hope to bring her home within the week but we just need to take things day by day.

When her pastor and a few of her close friends from seminary came this weekend, Mom told them that she really felt that God was leading her through all of this, just like how he led her to Rhode Island, the church there, then seminary and ordination.  This too was part of her journey and she felt God’s presence along the way.  She also said they she really felt held up by everyone’s prayers.  Thank you for your wishes and prayers for all of us. 

ap

The Latest

Yesterday was overall positive news.  The CT scan done Monday showed the GI team a better view of the partial bowel obstruction, and the scan did not seem to indicate a new major tumor issue.

The GI doctors late yesterday afternoon inserted a stent into mom's colon with the hopes of opening up her partial bowel obstruction. This endoscopic procedure took more than two hours.  It will take some time to see if this works; over the course of the next few days the stent will slowly open.  It seems more than likely the doctors will do another endoscopic procedure at the end of the week or early next week to see how much of an opening the stent is providing and to place another stent a little further up in the colon. It would be a great sign during the next few days if she could move her bowels on her own. This would hopefully go a long way in releasing the great pressure of the fluid and air in her digestive tract. 

Last night after the procedure the NG tube draining her stomach was not working properly so mom was up most of the whole night. The three of us with her at different times throughout the night, Katharine being with her for the most difficult part.  They moved her to a private room today so she could get more rest.  The medical care there continues to be very good - not only smart and competent doctors and nurses, but also very caring. Being at the hospital makes us even more in awe of the family and friends in our lives who work in the medical profession.

Mom is Back in Boston

Yesterday we flew with Mom and Dad from Florida back to Boston. With big snowstorms up and down the East coast on Thursday, we were very grateful that our flight was on time and uneventful. Mom made it through the flight and undoubtedly no one on the plane knew how sick she was.  After arrival at the airport, we drove directly to the emergency room at Brigham and Women's Hospital.  The hospital was so crowded that the ER waiting room was moved to the hospital lobby so they could use that waiting room to treat patients.  Since mom's surgeon knew she was coming and due to her health issues, they fast tracked her and she was seen relatively quickly and then admitted.  

Looking at her scans taken in Florida, the Boston doctors see the narrowing of the colon that is causing much of her pain and bloating.  The oncological surgical team proposed that perhaps a stent could be placed in the colon during a endoscopic procedure (similar to a colonoscopy) to enlarge the colon's opening.  This would be a minimally invasive procedure as compared to surgery.  However, there are many issues for the gastrointestinal team to consider (such is there enough of an opening to insert the stent and will the stent stay in place after insertion).  The "advanced gastrointestinal team" is meeting with the oncological surgical team on Tuesday to review previous scans, an upcoming scan and mom's overall medical record before making recommendations regarding the stent or other procedures.

Poor mom is dealing with many issues in addition to the partial bowel obstruction.  Her pain fluctuates and can get bad very quickly. Here in Boston they placed her on a IV where she can control her own pain med dosing.  She has gained 30 to 40 pounds in fluids in the past two weeks, distending her stomach and filling her legs with fluid. This makes walking and moving around painful.  Some of the fluid retention is from the cancer, but they think a majority of it from the bowel obstruction.  Last night in the middle of the night she started spitting up stomach contents so they inserted a NG tube into her nose to drain her stomach.  It was difficult to place the tube and took several attempts, but she did find relief as some of the intense pressure was relieved.  Mom is also on a catheter to monitor her urine output. Tonight that was not functioning, making mom feel like that everyday has something new to deal with and overcome. (As I write this, Michael tells me the new catheter seems to be working.)

With all these issues going on, we are so glad that we were able to bring her to Boston and this hospital.  In our first hour of talking with the doctors in the emergency department and oncological team, we learned so many new things through their thoughtful ideas and from their clear explanations.  While there were some very good doctors and nurses that stood out when mom was in Florida, the caliber of the doctors in BWH in Boston is amazing. I said to mom in the ER, "I feel like we are on a different planet." 

Dad is hanging in there. The hustle, bustle and noise of hospitals are not conducive to an 88 year old man who has difficulty walking and hearing. He worries about mom and is not sure at times what to say to her. He is glad to have his kids and family around to help mom and him too. Right now in Boston, we are staying at a hotel very close to the hospital where we can take dad back and forth to see mom. 

We will let you know what the doctors decide on Tuesday. Thanks for you good thoughts and prayers for mom!

Heading North Soon

Mom is still in the hospital and it's been a tough week for her.  They did not want her to leave there until she moved her bowels, so all sorts of measures were tried from medicines to a painful gastrografin enema.  Scans did not indicate a blockage, so they performed a colonoscopy yesterday.  The gastroenterologist found a partial obstruction he believed potentially caused by a tumor on the outside of the colon, though recent scans have not shown a tumor in that region.

We are flying out of here on Friday, waiting for the big snowstorm on Thursday to pass.  We will go from the airport straight to Brigham and Women's Hospital in Boston to be admitted to the hospital.  There her surgeon from the Dana Farber Cancer Institute will evaluate her to determine if she does have tumor constricting her colon, if surgery alleviate the blockage (resulting in a likely colostomy), and evaluate how her overall health and strength. Mom wants to keep pursuing options and the doctors think potentially there are some measures she can take. Mom's oncology team in Rhode Island has been wonderful in helping us sort through all of this, and we have great confidence in them and in her Boston surgeon to guide her and us through all of the upcoming the decision making.

Currently Mom is able to walk around, she is on a clear liquids diet and her pain level fluctuates from uncomfortable to severe pain at different times of the day.

A year ago when her surgeon first told her that it was stage 4 cancer and therefore incurable, he said that perhaps chemo could turn a life expectancy of "months into having months and months."  This was my initiation into the vague timelines given with terminal illness.  The surgeon was right - Mom has had many months and months, and overall it has been a wonderful year.  To use a similar analogy, I think some of the current options being considered could turn having just weeks into having weeks and weeks.  Of course, she and all of us want for time that includes a quality of life that makes it all worth it. Decisions are ahead - some will be made by mom, some will be made for her depending on what future evaluations determine.

After we got the bad news from the GI doctor about the partial blockage, there was a knock on the door and it was someone from the pastoral care team asking if we were interested in a prayer - and we said yes!  Mom is still finding comfort and strength in prayers - and in sunsets.  She gets out of bed to take pictures of the sunset she sees from her hospital window.

Thanks for your prayers.  We will keep you posted after what we learn on Friday and the weekend.

Update on Denise

Please keep mom in your prayers.  She is having a tough time right now.  She has been having bad abdominal pain for several weeks since being in Florida.  It reached such a high level of pain last Wednesday that she went to the emergency room and has been in the hospital since then.  She went through a battery of tests looking for an obstruction, new tumor masses, or infection.  What they did find among other things was abdominal fluid retention which could be a sign the cancer is more advanced than we thought.  Her doctor in Florida has advised mom to return to Rhode Island to be with her family and her team of Dana Farber doctors.  This news was a devastating surprise for mom; she felt like she was getting better and doing well all things considered.

However, mom is not being released from the hospital in Florida yet because mom is not able to move her bowels (likely due to pain medication but they looking for other causes) and because at certain times of the day the pain meds are not able to control her pain. We are not certain when she and dad will be leaving Florida - at the moment Patty and I are down here with them - but we hope we can fly them home within the next few days or within the week.  It will be very hard to mom and dad to leave her - they love it and they have wonderfully supportive friends down here.  But mom realizes she wants to spend time and treasure life, family and friends up back at the Golden Pond home.

I know you have many more questions - all of us in our family do too.  The doctors are being helpful but they are not able to give us a road map at the moment how exactly this is going to play out.  I will keep you posted when we know more, when she is going home to Rhode Island, when she might be able to visit or talk with people.

We are all so grateful for your love and support of mom and dad.

Love, Christiana, Katharine and Michael

PS She is not able to talk on the phone much - gets tired and has a very dry mouth at times.  If you were going to send her a letter, I would send it to the Rhode Island address:

979 Old Stafford Road
Tiverton, RI
02878

Epiphany 2014

Today the Feast of the  Epiphany - the feast of the Wise Men following the star to find the baby Jesus. It has always been one of mom's special days. A year ago on Epiphany, we were in Boston preparing for her surgical procedure to learn how advanced the cancer was. It was stunning and devastating when the diagnosis had come back as stage 4 cancer. All seemed very dark and very bleak, and the idea of following light, following a star seemed so relevant, important, and hopeful.

A year later, mom has followed the light and the warmth of our closest star, the Sun, and has traveled with dad back to Florida for the winter. She and dad got out just in time on the day snow and arctic weather descended on New England.

Mom received chemo today. Since the week of Thanksgiving, after she fully recovered from her ovarian cyst surgery in October, she is back on a schedule of receiving chemo every other week. All things considered she is doing really well, though there are days, especially late in the day, where she does not feel 100% and needs to take some pain meds and rest. Her blood tumor marker is higher than it was in October but has been stable recently. There are certainly times of high stress and frustration about setting up doctor appointments or worrying what is causing her to at times not feel well. However, Mom continues to have a great overall attitude. She and her granddaughter Graylin went outside on New Year's Eve at midnight to ring bells to welcome the new year and 2014; mom was excited about the new year. 

We all gathered in Rhode Island for Christmas. It was wonderful to have all of us be together, especially the grandchildren. The kids had a great time with their DeeDee and Vovo.

On this day of Epiphany, we thank all of you for being on this journey with mom and all of us this past year. Your love, prayers, good wishes and messages have meant the world to mom and us, and have helped us all to keep focused on following the light, following the joy.  Much love from us to you!  Happy New Year.

Mom and Dad hope to be in Florida through the winter months.  Their Florida address:

1550 NE Ocean Blvd B102

Stuart FL 34996

Photo of Mom and Dad in Rhode Island on January 2 before heading to the airport.

For photos and to post comments, go to www.followingdenise.blogspot.com