Friday, February 19, 2010

Donations for Gwyneth and William

Since Robert's death, many have asked how to contribute to a trust and/or scholarship fund for Gwyneth and William. After conferring with financial planners and an estate attorney, we decided the easiest method would be to collect cash and checks now - and then later invest in a custodial account and 529 college-savings plan.

There are two ways to donate money:
1) Use the current PayPal account:
https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=2953259

2) Send a check, payable to GWYNETH SUSIL, to:
Susil Family Support
C/O Jonathan Hansen
7100 Ridgeleigh Court
Baltimore, MD 21212

If you have any questions, please feel free to contact Jonathan Hansen or Dan Ennis:
Jonathan.Hansen@comcast.net
Daniel.Ennis@ucla.edu

Tuesday, February 16, 2010

In Memoriam

By Gwyneth Susil
At our wedding, the Gospel reading was Matthew 5:13-16.  Both Robert and I have the verse engraved on the inside of our wedding rings.  The Gospel speaks of the call for all of us to be a light for the world.

Robert lived that calling in everything that he did, and there is not a person here today whose life wasn’t made better by his life.  But it was for me and for William that his light shone most brightly.  Robert wasn’t perfect – despite his impressive organizational skills, he had a maddening inability to remember my work schedule more than 24 hours in advance; and he had absolutely no realistic understanding of time, firmly believing that he could make it from the door of his office to our front door in 15 minutes, no matter how many times it was proven to him that it was a 35 minute trip.  But as a husband and a father, Robert was an unwavering beacon of light.  He was entirely devoted to William, and he gave me the most selfless and all encompassing love that one person can give to another.  Love that I never doubted for one minute.  Love that I never regretted for one second.  Not during the challenges of dual internships and a newborn baby.  Not during the shock and horror of his initial diagnosis 2 years ago.  Not during the seemingly endless rollercoaster of his subsequent treatments.  And not during the last few days of his life, when I was asked to do the hardest thing that anyone could ever ask of me – let him go.  Through all of that – and through the innumerable joyful moments in between – his love and his light was always there around me.

I gave Robert a book last year for Valentine’s Day – a compilation of photos and quotes that told the story of our relationship.  One of the quotes stated: “Being deeply loved by someone gives you strength, while deeply loving someone gives you courage.”   I do not understand why Robert was not able to stay with us, why he couldn’t continue the great work he was doing here among us.  But it is my hope and prayer today that we will all find the strength and courage to see Robert’s light continue to shine – amongst his colleagues, as they continue his research and remember his great caring and respect for his patients; amongst his family and friends, as we continue the relationships that he helped to bring about, and from me and William, as we work to become the light to the world that Robert believed we could be,


By Jonathan Hansen
I first met Robert 17 years ago, when we were both undergraduates at the Johns Hopkins University. We were also members of the swim team, so some of my first encounters with Robert involved heading to the pool for practice when it was dark and early in the morning.

Our coach, George Kennedy, has a story that he likes to tell about Robert. During the competitive season, the swim team travelled up and down the East Coast for meets. These trips would occasionally interfere with exam periods, so George would make arrangements to administer tests on the road with him serving as the proctor. During my freshman or sophomore year, there was one Chemistry exam that just about everyone had to take. It was a difficult test, so my teammates and I were anxious about how we did. So, after the test, someone built up enough nerve and said to George - “Can you grade our tests and tell us how we did?” Now George, while he was a great swim coach, was no chemist. So, he answered, “Unfortunately, I can’t. I don’t have the answer key.” But my teammate already had his response planned, “Yes, you do! You can use Robert’s test!”

Robert as the answer key. To those of us who knew him, this tale is probably not very surprising. Robert’s intelligence has been elevated to near-myth amongst the swim team, and perhaps the entire Hopkins Community. After talking with many of his friends and colleagues, I am convinced that his name is nearly synonymous with academic excellence.

And indeed he was smart! It would probably take hours to list all of his academic achievements, including his degrees, awards, and everything else that he earned during his 17 years at Johns Hopkins. He was an accomplished student, researcher, scientist, and physician.

But as I’ve reflected on Robert’s life over the last few days, I’ve been forced to wonder if there was more to him that made him truly special. After all, the world is filled with very smart people, but I suspect very few were quite as beloved as Robert.

And so I reached the inevitable, yet entirely anticipated conclusion; Robert was a remarkable person, for so many reasons above and beyond his intellect. So, as a tribute, I’d like to talk about a few of them today.

Humility. Robert was one of the most humble people I knew. Although he had a lot to be proud of, he never boasted or made people feel unworthy of his attention. He lived his life with grace, knowing that he was blessed and freely offering his help to those in need.

I know this from personal experience. Although I was a good student in college, I was by no means in the same league as Robert. We both majored in Biomedical Engineering and planned to go to medical school, and thus had a fairly demanding course of study. Naturally, Robert had an easier time with it, understanding topics more intuitively than I did. Through our four undergraduate years at Hopkins, he helped me immensely, patiently explaining things and prodding me in the right direction. And through it all, he did it with grace. I never felt like I was bothering him; if anything, I felt like he enjoyed helping me. Without his assistance, I’m not sure I would be where I am today.

Work Ethic. Given Robert’s natural abilities, you may suppose that he could afford to sit back and rest on his laurels from time to time. But that, frankly, is not the Susil way. Robert worked harder than anyone I knew, putting extra hours in the library, lab, or hospital, just to get the very best job done.

This continued into the last days of Robert’s life. You may think that after being diagnosed with an aggressive form of cancer, in the midst of receiving treatments that left him feeling constantly sick and tired, that he would take some time for rest or at the very least, not take on any new projects. But again, that is not the Susil way. A few months ago, Robert began writing an iPhone application that enables physicians to convert between equivalent doses of pain medications. Despite his illness, Robert saw a need to help patients and their physicians, and therefore devoted his time and talents to provide a solution.

Friendliness. Robert was one of the friendliest people I met. He knew just about everyone and just about everyone knew him – and liked him. I often joked that you couldn’t walk anywhere in Baltimore with Robert without running into at least one person that he knew.

I can’t ever remember Robert getting angry with someone. Even when dealing with conflict, like talking with an intractable customer service rep. or a belligerent parking lot attendant, Robert always managed to win them over with his charm, eventually leaving them with a laugh and a smile.

Loving Father. Kids loved Robert – especially mine. Whenever he came to visit, my son and daughter would run over to him and start clamoring for his attention. They always got it and they loved him for it.

Robert was William’s daddy, and he was perfectly suited for it. Robert loved spending time with William: playing games, singing songs, and teaching him life’s lessons. Despite Robert’s dedication to his work, his relationship with William was always a top priority. Robert knew that as a father, it was his responsibility to mold William into a man. And even though William is still very young, we know that Robert succeeded – William is a very special little boy and his father’s son.

Devoted Husband. I remember when Robert first met Gwyneth. He was so excited, and I knew that he had met someone special. And he had! It was instantly apparent to all of us that he and Gwyneth were a perfect match. She was smart, beautiful, strong in her faith, and everything Robert deserved and was looking for in a spouse.

Watching their relationship over the last 8 years, I was always struck about how tenderly Robert loved Gwyneth. He never ceased to show her affection, and always looked out for her, sacrificing himself for her interests. Robert’s example showed me how to be a better husband, and I’m grateful for that – and so is my wife.

Faith. Robert’s faith in God was central to his being, and perhaps unites all of his other commendable attributes. Early in his life, Robert recognized how much he had been blessed and therefore used his gifts to their fullest extent in order to make the world a better place. He was extremely thankful that God brought him such a wonderful wife, and then a wonderful son, and he cherished and loved Gwyneth and William with all of his heart.

Through the trials of his cancer, Robert’s faith was renewed and strengthened. I was always amazed about how upbeat Robert was over the course of his treatment. To be certain, he hoped and prayed for a cure… and rightfully so, as did we all. But, now I see that he was also content with God’s provision, knowing that his hope, both in this life and beyond, lay in God’s hands.

So, I’d like to conclude with one of my favorite scripture passages, Romans 8:28:
 “And we know that in all things God works for the good of those who love him, who have been called according to his purpose…”

This is an astonishing statement. It defies any kind of rational explanation. How can any good come from this awful tragedy? Robert’s life was horrifically cut short and we miss him dearly. In the midst of all of our sadness and grief, what can possibly be done that can could be considered good?

Well, the most honest answer is that I don’t know. I don’t know how God will work to turn our sadness into joy. I don’t know how we will live without Robert’s presence in our lives. But maybe our ignorance, our inability to know what the future holds, is ok. Perhaps in our grief, we can use Robert’s life as an example, like an “answer key” for our faith. We don’t need to know what the future has in store or what’s exactly going to happen; rather, all we need is to know that God is good, God is in control, and in the end, God will be glorified. For as Romans 8 concludes:
“I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.”

But even then, without knowing the future, I can see another ray of light, shining down on our despair. Over the last few years, I have had the privilege of witnessing all the love that has been poured out on the Susils during Robert’s treatment and since his death. This love provided money, meals, housing, babysitting, hugs, prayer, and countless other things. This love came from you. It is a wonder that should be cherished, even now despite our sadness.

So, from this love, I’d like to say from all of us, to his family:
To John, Agnes, and the Susil Family – You raised a remarkable son; a man of faith, intelligence, humility and grace. You will rejoice with him again one day.
To Gwyneth and William – You have lost your husband and father. He was a good man, the finest of men, and his loss is deeply felt by us all. But, always know that he loved you, we love you, God loves you, and you will never be alone.

Monday, February 15, 2010

REMINDER - Wake Today


Visitation will be held at the Mitchell-Wiedefeld Funeral Home on Monday, February 15th from 3:00 to 5:00 PM and again from 7:00 to 9:00 PM. The latter time will include a prayer service.

Mitchell-Wiedefeld Funeral Home
6500 York Road
Baltimore, MD 21212

Given the recent snow, street parking at the funeral home will be limited. Visitors can use the lot at St. Pius X Church, which is adjacent to the funeral home. 

Tuesday, February 9, 2010

FUNERAL POSTPONED


FUNERAL AND WAKE POSTPONED

As I mentioned in my last post, Baltimore is expecting another significant snowfall tonight and tomorrow. Given this is on top of last weekend’s 24 inches, we are concerned that people will not be able to get to Baltimore by Friday for the funeral.

Consequently, the wake and funeral are POSTPONED to Monday, 2/15 and Tuesday, 2/16 respectively. The corrected details are given below.

I sincerely apologize any difficulty this may cause with your travel arrangements. I contacted the Sheraton Baltimore North hotel and asked them to change the room block to Monday and Tuesday nights.

 Please let me know if you have any questions or concerns at:

Jonathan.Hansen@comcast.net
(410) 961-6025

*****

Visitation will be held at the Mitchell-Wiedefeld Funeral Home on Monday, February 15th from 3:00 to 5:00 PM and again from 7:00 to 9:00 PM. The latter time will include a prayer service.

Mitchell-Wiedefeld Funeral Home
6500 York Road
Baltimore, MD 21212


The funeral mass will be held at the Cathedral of Mary Our Queen on Tuesday, February 16th at 11:00 AM. Interment will follow at the New Cathedral Cemetery.

Cathedral of Mary Our Queen
5200 North Charles Street
Baltimore, MD 21210

New Cathedral Cemetery
4300 Frederick Road
Baltimore, MD 21229

Monday, February 8, 2010

Update about Funeral Arrangements

As discussed in an earlier post, Robert's funeral will be held this Friday, February 12th at 11AM at the Cathedral of Mary Our Queen.

Cathedral of Mary Our Queen
5200 North Charles Street
Baltimore, MD 21210

IN CASE OF SEVERE WEATHER:
Baltimore may experience another snowstorm within the next couple of days. If severe, it may be necessary to postpone the funeral to Saturday morning. If possible, please make your travel arrangements accordingly. Any changes to the schedule will be posted on the Yahoo group, blog, and Robert's facebook profile.

MEMORIAL DONATIONS:
Gwyneth and the Susil and Weigel families ask that you consider a donation in Robert's memory to these charities:

Americans United for Life

The Sarcoma Federation of American

ACCOMMODATIONS:

Rooms have been reserved at the Sheraton Baltimore North:

Sheraton Baltimore North
903 Dulaney Valley Road
Towson, Maryland 21204
(410) 321-7400
(888) 627-7147

Guests should ask for the "Friends and Family of Robert Susil" rate, which is $99 per night for Thursday and Friday nights. Parking in the hotel's covered garage is complementary. The hotel is located near the Baltimore beltway and is approximately 4 miles north of the Cathedral of Mary Our Queen and Mitchell-Wiedefeld Funeral home.

*** A small number of Maryland residents have offered to host visitors from out of town and/or assist in transportation from the airport. If interested, please contact me atJonathan.Hansen@comcast.net.

Sunday, February 7, 2010

Services

Dear friends,
Following are details about the funeral arrangements for Robert:

Visitation will be held at the Mitchell-Wiedefeld Funeral Home on Thursday, February 11, from 3 to 5 pm, and from 7 to 9 pm. The latter time will include a prayer service.

Mitchell-Wiedefeld Funeral Home
6500 York Road
Baltimore, MD 21212

The funeral mass will be held at the Cathedral of Mary Our Queen on Friday, February 12, at 11 am. Interment will follow at the New Cathedral Cemetery.

Cathedral of Mary Our Queen
5200 North Charles Street
Baltimore, MD 21210

New Cathedral Cemetery
4300 Frederick Road
Baltimore, MD 21229

In lieu of flowers, Gwyneth and the Susil and Weigel families would ask you to consider a memorial donation; suggestions will follow.

The outpouring of love, condolences, and prayers over the last two days has been tremendous and appreciated by all. For those who are in a position to offer practical support to Gwyneth and William, information will be provided the in days and weeks to come as to how and when would be best to help.

Thank you,
Jonathan
Jonathan.Hansen@comcast.net
(410) 961-6025

Friday, February 5, 2010

At Peace

Dear friends,

With a heavy heart, I must regretfully inform you that Robert passed away this evening. He died peacefully with Gwyneth by his side.

If you’d like to send a letter of condolence, please let me know and I can send you their mailing address. If you're interested in offering other help, please let me know and I can coordinate with Gwyneth and the Susil and Weigel families.

Information about arrangements and other details will be forthcoming.

On behalf of Gwyneth, William, and the Weigel and Susil families, I’d like to thank all of you for your support over the last few years. They truly appreciate your love, encouragement, and prayers. It is also a testament to how special Robert was.

Thanks,
Jonathan Hansen
Jonathan.Hansen@comcast.net
(410) 961-6025

Thursday, February 4, 2010

A big meeting

Hello to all -

The last two days have been difficult, as Robert has not been able to move any closer to coming off the ventilator.

I met with his primary oncologist and his pulmonologist today and we discussed the fact that if the high dose steroids were going to have any significant effect, we probably would have seen that by now. And while we think that the amount of bleeding in his lungs has slowed, it does not appear to have stopped completely.

It is not good for a person to remain intubated for a prolonged period of time, since the pressure of the vent can cause damage to airways, and a person's breathing muscles get weakened by not being used.  So, we talked about attempting to transition Robert to a different kind of breathing support - something called CPAP or BiPAP.  These are both tight fitting masks, that when worn, provide some additional pressure into the lungs the way a ventilator does, but do not require a breathing tube.  These masks can also deliver high concentrations of oxygen, similar to being on a ventilator.  In order for Robert to be able to transition to CPAP or BiPAP though, he needs to be able to initiate breaths on his own.  So, if we are going to try and make this transition, we need to begin to wean him off his sedation medications.  In addition, before having the breathing tube taken out, his ventilator would be changed to a different kind of setting that would allow us to monitor whether Robert is able to initiate his own breaths with enough force to be safely extubated.  We will try to move slowly towards these goals over the weekend.

Unfortunately, even if Robert seems ready to be transitioned to CPAP or BiPAP, it is possible that once we take the breathing tube out, he will not do well without it.  If that happens, I may have an extremely difficult choice to make (one that he may or may not be able to contribute to, depending on how awake and verbal he is at the time).  The question of whether or not to re-intubate will be a hard one to answer, and is something that I will need to think and pray about seriously this weekend. If he were to be re-intubated, he would likely require a tracheostomy (a surgical opening into his airway that is then attached to a ventilator).  It is possible that with a tracheostomy he could be awake enough to communicate, although not talk, and if he were able to remain comfortable and do that, what a great gift that would be for myself and William.  However, it's a very invasive procedure, one that Robert and I never talked about, and in the face of still having widespread metastatic disease,  I would have to feel confident that going forward with a tracheostomy would actually contribute to meaningful time with our family. 

If he is able to transition to CPAP or BiPAP, it is our hope that over time the bleeding in his lungs would stop and his lungs would start to heal.  That would still leave unanswered that question of how to further treat the remaining cancer, but would hopefully at least allow Robert comfortable and awake time with us.

As you can see, these next few days are critical.  I know how hard everyone has been praying; I ask you again to continue to pray with all your heart for Robert's healing, comfort and peace.

Gwyneth

Wednesday, February 3, 2010

quick update (Wednesday morning)

Robert did fine overnight but we are having a little more difficulty keeping him sedated this morning. He is very comfortable when he falls asleep but any little noise really seems to wake him up. 

I'm going to ask all our wonderful friends to hold off on visiting for this morning, until we get him a little more sleepy.

I'll put up another posting this afternoon if I think it's okay for visitors again.

Thank you!
Gwyneth

Tuesday, February 2, 2010

Tuesday night

I really have a hard time coming up with interesting titles for these blog entries!

I am sitting next to Robert's bed as I write - he is much more alert this evening, but so far seems comfortable. This has been wonderful for me, as we were able to "talk" a little bit. He continues to tell me that he is not in pain, although he also nodded yes when I asked "is it better to be asleep?"  He seems to understand when I explain which medications he is receiving and why, and a friend of ours stopped by this afternoon and joked with him about needing a Radiation Oncology consult for a patient of hers, and I am told that Robert smiled at the joke, although I was out of the room at the time. 

On the medical front, Robert remains much the same. He continues to have some bleeding into his lungs, although we have been somewhat hopeful that it is slowing down, as he seems to be requiring fewer blood transfusions.  Today was his third day of high dose steroids, and the plan is to continue him on a lower dose of steroids for at least the next little while.  Because he is receiving such significant doses of steroids, which suppress his already compromised immune system, he was started on prophylactic antibiotics today, to try and prevent infection. He was able to to tolerate a lower oxygen setting on his ventilator for a while today, but required going back up to the higher level this evening.  He had some periods of coughing this morning, but that seemed to calm down as the day went by.  He has been able to tolerate a higher rate of formula through his feeding tube. 

It is snowing here again in Baltimore and I am about to go for a walk through the snow, as one of the wonderful social workers on Robert's team was able to arrange for me to have a room in the Family House across the street from the hospital.  I am very reluctant to leave Robert, even for a few hours, but a good friend will stay with him while I'm gone and I can run back across the street quite quickly if needed. 

With hope and prayers for a quiet night and for Robert's healing,

Gwyneth

Monday, February 1, 2010

Monday evening

Hello to all our friends.

When I held up the phone to Robert's ear this evening so that William could say goodnight, I heard a little voice say "Goodnight Daddy, I love you." And then I saw Robert definitively raise his right eyebrow, which is the most interactive that he has been all day!

All in all, I think he has been comfortable today.  He continues to receive his steroids and antibiotics.  He is receiving some nutrition through a feeding tube, but his stomach appears to be moving slowly, so we frequently have to stop the feeding (which ideally would run at a slow continuous rate throughout the day) to allow him some time to digest.  He was seen by a physical therapist who was able to teach me some gentle exercises to keep his arms and legs limber while he is lying in bed. 

We had many visitors today and it was nice to see so many friendly faces.  I have been especially touched by the messages from so many of you telling me that your children are praying for Robert. 

We are hoping for a quiet night here. 

Gwyneth

Monday morning

Good morning to all.  Robert had a relatively quiet night.  He did require a small increase in his oxygen settings for a brief period this morning, which may have been due to him being moved around a bit for a bath, sheet change and suctioning.  He is now back to where he was yesterday on his ventilator settings and his blood gases have remained stable. He is very, very comfortable (so much so that we are going to reduce his sedative medications a little today).  Yesterday he started receiving some food (formula) through a feeding tube to give him some nutrition and he is tolerating that well. 

For those of you in the area, please feel free to stop by today if you would like.  If it gets to be too much, I will post a sign on his door. 

Gwyneth