Amanda

At the beginning of Maura's cancer journey, a young friend came back into our lives. She had mostly known my older girls through church and school, but life had taken them all in different directions and they lost touch. Amanda was only a few years older than Maura, married, very wise, and she had been dealing with cancer for a couple of years, so she spoke with authority. At one point she had been on death's door and subsequently--amazingly--had gone into remission. When she became Maura's friend and mentor, she was in remission for the fourth time.
Last year, she would bring black bean burritos each week and sit in the living room with us. Maura wouldn't say a word. Amanda never seemed uncomfortable with silence. Slowly, Maura began to open up to her; Amanda responded with advice or related a story about her own experience. She began to teach Maura some life skills that were especially valuable to someone in the cancer maze. From Amanda, Maura learned to speak her mind at the doctor's office, to stick up for herself when a health care worker neglected to treat her the way she wanted to be treated, not to be embarrassed about getting her way at the hospital , even if an employee (or friend or family member) was inconvenienced. She learned not to let cancer define her life. She learned to trust God, regardless of the outcome.
She gave Maura a box of Bible verses that had once helped her and a bag of all her caps and scarves from when, she. too, had no hair.
One day last year Amanda told Maura that she would take her cancer for her, if that were possible, because Amanda has a gold heart and she loved Maura that much.
A couple of months ago, Amanda's cancer returned, and she began chemo treatments for the fifth time. Even so, she never left Maura during the last couple of weeks, camping out on our floor while Maura was in hospice care. Maura had asked her to stay. I don't think we could have dragged Amanda away had we wanted to. But we didn't want to. Amanda was a constant presence at the house and at the hospital, showing up at Maura's bedside at 4:00 in the morning when I needed a nap, quietly finding her place in our home. A few days before Maura died, Amanda told Maura again that she would take her cancer if she could. This time Maura responded. "I wouldn't let you. You are going to get well and live and get pregnant and have a baby. And you are going to bring that baby over to our house so my mom can rock her." And I think they both cried. I did, at least, when I heard the story.
A couple of days after Maura's memorial service, Amanda got her latest CT-scan results after fewer than half the recommended chemo cycles. Clear. Cancer is gone.

Her Cancer Was Not YOUR Cancer

To Elsa, Healthy Lindsey, Kathy, Ray, Amanda, and to everyone else who has cancer or has a loved one with cancer:
Maura's cancer was not your cancer. I tell you nothing you don't already know, but allow me to say it anyway.
Maura's cancer was particularly aggressive (mitotic count 10/10, for those who care about such things). Most cancers are not.
But more than that, each body responds differently. Each person on the cancer journey draws on unique strengths. Each unique cancer interacts uniquely with each unique person.
While we all strive collectively, we cannot deny the personal nature of a life affected by cancer.
Please keep on living. You will be the one to survive. You will win. You will see your children get married and you will have grandchildren. Your life gives me hope and courage and meaning.
~Erin

Beauty

First of all, I apologize that there was no live feed--the internet at the church went down. Many hours of work on this end, but the failure was on the part of the ISP. I hear that the service was recorded. I'll find out more information later and let you know. I'm so sorry you were all inconvenienced.
Second, I do not know how I will thank everyone, but I will try in a later post and in notes, if I can ever get addresses.

Third, the memorial. Over 400 people in attendance. About 60 choir members from the university. Another 30 or so from the high school. Angelic singing from two awesome sopranos. Selections from the Rutter Requiem and Ubi Caritas et Amor from Maura's college choir, and The Lord Bless You and Keep You from her combined high school/college choir. A long video of photos and video clips of Maura's life. A wonderful obituary and message from a pastor of the church. A moving eulogy from Maura's choir director. Over 1000 flowers, mostly yellow, mostly sunflowers. At least half the church wearing yellow dresses, yellow shirts, yellow jewelry, yellow scarfs, ties, shawls, or shoes. Framed pictures of Maura -lots of pictures of Maura. 1200 origami cranes stretched from one end of the church to the other, hope and smiles and tears and gratitude.

Fourth, after the service. Hugs, remembrances, friends, strangers, lines, food, more food, way too much food, pesames, laughter, shared understanding with those who have also lost a child or recently lost a loved one, Mary fitting into Maura's impossibly small boots, friends just sitting in her room soaking up the remaining fragrance of her life.

Maura's Memorial Service - Link to Video Streaming

On Saturday, May 23, at 10:00 a.m. Houston time and 1200 hrs. in Brasil, Maura's memorial service will be streamed live. We hope. Streaming begins at 9:30 a.m. We hope. With so many family and friends in faraway states and countries, this seemed like a good idea. many thanks to Carlos and SBC staff for making it happen.

Click here to view:
mms://66.186.34.170/maura
If that link doesn't work, try the following link:
http://www.espressoweb.com/maura.asx

(EDIT: the links above don't work, so instead, go to the following entry from the month of June 2009 with a working link.)
http://mauraupdate.blogspot.com/2009/06/mauras-memorial-service.html

Maura's Story on Channel 2 (NBC Houston)

Click on the title, which will take you to the story and video that Channel 2 aired about Maura this evening. I haven't figured out how to embed the video yet.

Maura's Story

We were interviewed this afternoon and Maura's Story aired on our local Fox station tonight, just one day after Maura's death. We think that Mr. Stipes did a wonderful job of putting together a sensitive and loving portrait of our daughter. She would be happy to know that her story may increase sarcoma awareness, although, unfortunately, sarcoma was not specifically mentioned in the story.
Click on the blog entry title to be linked to the written story on line.

Yellow

...and wear yellow if you have yellow. 

Confirmed Plans for the Memorial Service

It is confirmed.

 The memorial service for Maura will be as previously mentioned: Saturday, May 23, at 10:00, at Spring Baptist Church, 1027 Spring Cypress Road, Spring, TX.

I  hope there will be lots of singing.

Fox News

For Houston people...Maura's story will be on Fox News at 9:00 tonight right after American Idol.

In Lieu of Flowers...

In lieu of flowers, please consider donating to one of the following:

Sarcoma Research

MD Anderson Cancer Center- Donations

PO Box 4486

Houston, TX 77210-4486

(Please write "In memory of Maura de Souza " in the memo portion of the check or include a note with that information.)

OR

The Maura Cassiana de Souza Music Scholarship Fund

c/o SHSU University Advancement

Attn: Rhonda Ellisor

Box 2537

Huntsville, TX 77341

(Please make checks payable to SHSU University Advancement with Maura de Souza Scholarship Fund written in the memo portion of the check, or include a note with that information)

We love both these choices. One, the brainchild of Maura's voice teacher at SHSU, honors her and keeps her memory alive even past our own lives. The other, an efficient way of giving straight to clinical research, may someday find more effective treatments and a cure for this rare cancer. Maura loves sunflowers, but I know she would approve of these alternatives.

Funeral Service-Tentative

The memorial service is TENTATIVELY scheduled for Saturday at 10:00 a.m. at Spring Baptist Church.   I will post tomorrow for sure after we've talked to the funeral home. 

Ultimate Graduation

It's finished. Maura is in heaven, certainly singing already. She left this earth surrounded by family and friends, with Handel oratorios playing in the background. God bless those of us who remain. We suffer because we miss her. She is in perfect peace and happiness and joy. Thank you, God.

In My Weakness I Am Strong

A year ago I could not have imagined the grace that I--that we all have received, allowing us to let Maura go. There is much sadness but no fear. Thank you, Jesus. We are ready to give her to you.

Brasil

Abracos e beijos a parentes e amigos do Brasil. Agradecemos as oracoes e lembrancas. Agradecemos a voces por acompanhar nossa jornada.

Concert

An impromptu concert came about during visiting hours last night. The house was filled with friends, teachers, and relatives. Maura had rested most of the day and became very alert--very, very alert--just before they arrived. The began to sing upon her request--opera arias, choral pieces, guitar solos, hymns,whatever she asked for. She asked for some Sonic sweetened iced tea and took a few sips. After about 90 minutes, her energy waned and people began to say their goodbyes to her. It was a beautiful evening.
The over exertion caused a bit of a pain crisis and anxiety, but that was soon addressed. She slept peacefully most of the night. She has had a few brief periods of wakefulness, but mostly, now, she sleeps.

Home

Got home early this afternoon. The whole living room has been converted into Maura's room, complete with the necessary hospital bed and equipment. She has a perfect spot where she can see all that is going on. Such a relief to be home! Please call Kara first, if you intend to come see Maura. She will have the latest info on visitation. For many reasons, we must severely limit the number and length of visits. Thanks for understanding that her family needs time with her.

For those who don't know what has happened: Maura's kidneys shut down last week after her tumors returned with a vengeance. There are no more effective treatments that she can take. Anything done now would prolong her suffering, and she does not want any extraordinary measures taken. She is at peace; she is not afraid to die; and she is absolutely sure that she will soon be in Heaven. Amazing grace, for sure.

Hospice

Maura will go home tomorrow with wonderful hospice care in place. Family and friends will surround her 24/7, and Bianca can snuggle up to her at the foot of her bed. 

By the way, the Houston Dynamo came to visit Maura yesterday and gave her a signed ball and a T-shirt.  Frankly, she looked stunning, was her usual charming self, and I think they were all quite smitten with her. Pictures later.

Graduation Day, The Movie

Graduation Day Part 1

It became quite clear that Maura would not attend graduation this coming Saturday at Sam. The party and moonwalk are also cancelled. 

But Sam Houston State University is amazing, and especially amazing are some of the faculty and administration of the Department of Music. They brought graduation to Maura, complete with cap and gown and honor cord, processional and Pomp and Circumstance, faculty and admin in regalia, a commencement speaker, conferring the degree of Bachelor of Music, her framed diploma, and  a choir song to close.  It was the best graduation ceremony I have ever attended. And it was one of the happiest moments of my life to see the outpouring of love and support from so many. I didn't count, but it looked like about 30 people who crowded into Maura's hospital room and spilled over into the hallway, not to mention the hospital staff who came to witness the event. Maura was very happy and said so many times.

 And then we got into trouble. A few minutes ago a hospital administrator walked into our room and read us the riot act about visitation policies. I need to learn how to curse.

 

Please pray for all of us as we go through some difficult days. God is gracious and kind. We plainly see how much Maura is loved by so many.

Change of Plans...

Please be in prayer for Maura. She has been readmitted to the hospital. We'll update soon.

Graduation Plans

Maura graduates from SHSU on Saturday. Although she is pretty sick right now, as of today she plans to participate in the ceremony and walk across that stage. She has earned it!
Afterward, there will be a celebration at our house, and, at Maura's request, a moonwalk. So, all of her friends and all of our friends and relatives, please stop by early Saturday afternoon to congratulate Maura! Come dressed in bouncing clothes! Those of you with kids, bring them.

Mother's Day

Thank you, God, for the gift of this day with Maura.

Power

God's power, prayer power and Dr. Benjamin's power.  Not days later , but only HOURS later, approval from both the trial directors and the insurance company came and Maura started chemo last night while still in the hospital.  She'll be hooked up to the chemo until tonight. Should be discharged tomorrow. Pain seems to be under control for now--she's not pain free, but her pain is at a tolerable level. 

Roller Coaster (Thanks, Jim)

Change of Plans

The doctor came in this morning with a slightly different plan. He is first recommending Maura for a Phase 2 trial of a drug that will knock down her platelets, but at least today's platelet level is just barely high enough to qualify for the trial, so he's going for it. Maura is optimistic. The research nurse came in to get consent forms and explain the protocol. The nurse practitioner came in to discuss lifestyle changes, eating, nausea and pain control. She gave Maura a boot camp pep talk. Maura will be discharged tomorrow, and, if all goes well, she might get her first treatment next week. Thanks for the prayers. Keep 'em coming. 

Rock and a Hard Place

CT results are in. Not good news. The short version is that the tumors are back with a vengeance.  Maura once again has ascites, fluid in her abdomen, caused by the recurrence of the tumors, which leaves her abdomen uncomfortably distended. She is in pain. There are no more acceptable options for chemo that can be safely given to her without killing her heart or her kidneys or her bone marrow.  Dr. B will seek to put her in a program that is an experimental drug that should not ruin any vital organs but might have some effect on the tumors. 

It's not the best time for visitors or phone calls. Give her a few days.

Waiting

We're still in the ICU because no bed is available on the unit where Maura needs to be. She had a CT-scan last night. Results today. 

ICU

Because of abdominal pain and bloating, Maura went to the E.R. at M.D. Anderson on Sunday afternoon. She was on the verge of being discharged after a diagnosis of a severe infection when her blood pressure plummeted to a level that didn't worry us much (we've seen a lot worse), but did worry the ER doc. So he transferred her to the Intensive Care Unit at about 2 a.m. this morning. what a strange place the ICU is. The large rooms are utilitarian without any of the decorative flourishes that you see in other hospital rooms that desperately try to make you feel less sick through interior design. Five team members received Maura into the room, hooking her up to a heart monitor, an IV, and a pulse/ox monitor, changing her gown in one semi-fluid movement, getting her chart up and running on the computer, placing orders for various and assorted antibiotics, tests, and patient supplies. Sleep is apparently not one of the components of "care" in the Intensive Care Unit. Despite the hour, the nurse would wake her up to ask questions for the chart, and she received visits from the x-ray tech, the respiratory therapist, the phlebotomist, the IV therapist , the lab, again, an ICU doctor, another ICU doctor, the EKG tech, the nursing care assistant, the lab again...No, sleep was not on their agenda. But they took good care of Maura. Thankfully, Maura does not need to stay here tonight. She will be transferred to a regular room as soon as a bed opens up. That means she really isn't in critical condition and that we can sleep better tonight.