30 Dec - Donations In Honor Of Sarah

For those who feel moved to do so, donations in honor of Sarah can be sent to the Susan G. Komen 3-day Walk for the Cure site below. Nicole Smith and I will do the 60 mile 3-day walk as a team this year in Chicago - we're calling the team "Sixty For Sarah." This is exactly the type of breast cancer research funding that Sarah would want us to support, and I know many of our friends and family have joined us in doing so in past years. Thank you!

http://www.the3day.org/goto/sixtyforsarah

28 Dec - Book of Memories

The boys and I are holding up ok, but it feels very strange for me to be following the same routines that I did before last Tuesday. Taking Sam to guitar lessons, taking Ben to karate, going shopping. My mind says, "Yes, that's normal," but my heart screams, "No, this isn't right! Nothing is! She's gone and that makes everything different!" I know I just need to keep taking it day by day and giving it time - and staying focused on the boys will help, too. The little things that come unexpected and remind me of Sarah are the hardest. Yesterday it was her favorite slippers that she wore right up until the last day -- now laying in a spare room with no more feet to fill them. Today it was "going out to dinner" and the realization that I won't be asking Sarah "Thai or Mexican?" anymore. I can ask the boys, but they'll just answer "which is more likely to have grilled cheese sandwiches?" Sigh... precious time. I miss you, Sarah!

Sarah's Uncle Bill asked me to post this request for emails with "Sarah stories:"

Dear Friends of Sarah,
I am Sarah’s uncle, the younger brother of her mother Jane. I am trying to help Alan and the boys by putting together a book of memories from you that they can look at in future years. Most of my memories are of a young girl growing up here in New Orleans and would very much like to have your recollections as a student, young adult, mother & friend.
What I have in mind is maybe a little bit different from a funeral tribute – a real-world memory or anecdote about Sarah which will collectively paint a good portrait for Ben & Sam 5-20 years down the road. In fact, while I’m asking you now, you may want to draft something and put it aside for a few days and then look at it again later – I almost always have additional thoughts after a first draft. Any digital photos would be great.
Ideally send it as a Word attachment, but any format will do. Please put Sarah in the subject line of your e-mail so I will be sure to open it.

Please send whatever you think appropriate and thanks in advance,

Bill Settoon
bsettoon@bellsouth.net

25 Dec - Christmas Wishes

I wish I didn't have to label the presents only "from Daddy."

I wish I could smile and thank her for the gift she got me.

I wish she could have seen the excitement on the kids' faces this morning.

I wish she were here.

Ben and Sam got us up at 6:30am and were twitching with excitement to open their presents. For a while there was just wrapping paper flying towards me and then I saw Sam's mouth form a perfect "O" when he saw that ripstick scooter that Sarah got for him. She knew it would score high on the "wow factor" scale and I just wish she could have seen Sam's expression. The boys had fun and they helped me find some light times as I played with them, but overall it was a tough day and I'm glad it's over.

It was great to have my parents and Elizabeth to keep me company, which made it easier. We all pitched in to make a nice Christmas dinner and I even managed to cook a dish - one that was a favorite of Sarah's.

24 Dec - Funeral on 31 Dec, 11am

I'm still stunned by how fast Sarah declined and it's hard to accept that I now have to live in a world that doesn't have her in it. Hitting me in waves when little things remind me. Most of the time I'm ok and keeping busy with everyday stuff and xmas preps, and then suddenly I'll think of something and get that lump in my throat and the feeling wells up inside me. I know I have the strength bear this, but I think it's going to be a long and hard road - and I think it'll get worse before it gets better. Thank you for all the love, support, calls and blog comments - all are a comfort to me and will help me find a way to focus on Ben and Sam as we heal as a family.

Thomas and I are collecting pics of Sarah for the memorial service - here's a preview of two of mine. Missing that smile terribly right now. :(

The memorial service will be at 11am on 31 Dec at St. Simon's Episcopal Church followed by a lunch reception in the parish hall. Sarah's favorite color was blue - the boys and I will be wearing blue and I invite anyone attending to do the same if possible/practical.

21 Dec - A Tender Goodbye

Sarah was relieved from her suffering tonight at 9:45. She slipped away peacefully surrounded by love. Thomas was with her until just before the end and Elizabeth, my parents and I were with her as she passed. I'm so grateful that I was able to be at her side, whispering into her ear and holding her as she let go. She's our angel now...

Sarah wanted us to remember her as she was before the diagnosis, so I've posted a picture of her and I in Nov 2005 and a picture of her the Christmas before, which felt right given the season. I think she'll find a way to be with us for Christmas this year in whatever way she can. I can still feel her presence. That's all for now - not sure it's really sunk in yet.

20 Dec

Thank you so much for the amazing outpouring of support through comments on the blog. It has been a source of comfort to feel like we are far from alone in this. Sarah's pain subsided last night and I was able to stop giving her morphine. She's stopped drinking fluids and has spent today in a deep slumber. She seems comfortable and at peace now and Thomas, Elizabeth and/or I have been at her bedside continuously. I'm very thankful that she doesn't need to be medicated for pain anymore - she has opened her eyes a few times briefly and was even able to lay her hand on Ben's when he reached out and said good-night to her. The hospice nurses say it looks like she'll slip away very soon - in the next few days.

19 Dec

Couldn't come up with a title to this post... it was too hard to put into words. As if Sarah was just holding on until she could enter hospice and let go, so took a turn for the worse today. She had a sharp continuous pain in her abdomen this morning so we had to start giving her morphine. Throughout the day we had to up the dose a few times with the doc's approval just to try to get ahead of the pain and she's been sleeping all day. She occasionally opens her eyes for a moment and can just barely respond to questions. She's stopped eating and has just had a little bit to drink today. Nurses say it looks like advanced liver shutdown and that she may drift in to a coma soon. Because of that and because we're having to give her enough pain meds that she can't stay awake, Ben, Sam and I each spent some time talking to her and saying goodbye in case we don't get another chance. It was very hard for me to do... this all seems to all be moving much too fast, but my only comfort is that it might make it easier for Sarah. I'm at her bedside now and hoping she wakes up a bit a few more times.

18 Dec - Gifts and Decision

Sigh. Today was another very tough and emotional day for us. Sarah told me today that she's decided she wants to stop all remaining treatments (Herceptin, Zometa and Coumadin) and enter at-home hospice. Although this will make the end come faster, she's already getting weaker and more uncomfortable by the day. It's hard to imagine that she could even make the trip over to the treatment center now. It was very hard for me to see us give this final bit of ground, but as we held hands and looked into each other's eyes, I could tell that my tough girl Sarah was ready. She's fought so hard and endured so much over the years and now I have to be tough too and find the strength to let her go.

This Christmas, as we all worry about what gifts to buy and wrap, I'm finding that my heart just isn't in it. All I can think about is the great gift that Sarah has given me and our boys - her undying (!) love and devotion to our family. Her gift of life to Ben and Sam and her dedication to being the best mom she could be for them, even in the recent difficult years. All other gifts just seem to pale in comparison.

We got a more comfortable hospital bed and other things for her tonight from the hospice center. We also managed to somehow make it through recording a video for the boys without breaking down and crying too much, and I helped her finish a letter each to Ben and Sam for safe-keeping. While the kids are excited about the gifts under the tree (as they should be!), these are the gifts I'll be most thankful for this Christmas.

18 Dec - Quick Update

Sarah started the day off pretty good on Friday but I think we wore her out more than we thought with the flow of visitors - by the end of the day she felt so weak that she was barely able to walk without help. She wasn't able to eat much but her reflux didn't seem as bad. Thomas went back home today and plans to return right after Christmas. Elizabeth arrived and will be with us until my parents come next week.

The boys and I are holding up ok. I'm just focused on helping Sarah and making her comfortable while finding time to just sit with her. She and I are touched by the origami cranes that many in the community are making for us! Here's a picture of them at our front door.

17 Dec Update

Not much new to report today. Ben and Sam and a fun day at school since they spent all day visiting each other's classrooms for a multicultural fair they've been preparing for. Ben had karate and got in some good punches... The boys are definitely affected, but they seem to be holding up well.

Sarah did ok but is really tired and very weak. We had a few visitors and she got some naps in as well. Thomas and I had her open her Christmas present early - an iPad and stand-up case so that she can stay connected with friends and family while resting in bed.

Some of our local friends have been asking if it's ok to visit or if we'd rather have more private time together. Sarah likes to have visits so no worries, as long as we keep from tiring her out - so shorter visits are best and I try to space them out a bit so she can rest in between. She and I are also finding opportunities to spend time together throughout the day.

We are also very touched by the origami cranes that have started appearing at our front door. Thank you for that visual reminder of how many people in our community care about us!

15 Dec - A Different Hope

Today was a tough and very emotional day. After we arrived at the Cancer Center and got Sarah settled, the doctor came in to tell us that he did not think we should move forward with the drain procedure. After finally being able to review the CT scan of her liver in detail, and after consulting a few other doctors, he said that the procedure would not help lower Sarah's bilirubin and would instead cause considerable discomfort because he'd have to go in through the rib cage vs. under it as he'd expected. It seems the tumors in Sarah's liver have caused too much damage and drainage of bile from healthy liver cells was not ultimately the problem anyway.

For all the years of Sarah's cancer, our life has been centered around hope - hope for a cure, for the next chemo to work better, for another procedure to improve her situation. There was always a set of options and possibilities. Now, all of a sudden, we're out of next things. With nothing around the corner to pin our hopes on and no treatment possible anymore, we have to accept that the course is set and Sarah's life will end soon.

Now Sarah and I are focused on a different hope - that we can make her as comfortable as possible, and that we can open our hearts and stay close as a family, sharing as much love and compassion for each other as we can so that it takes at least a little bit of sting out of the sadness that we all feel. That's easier said than done and it's hard for me just writing it right now, but we will do our best. So that we can face this together, we brought the boys fully in the loop today and they are starting to digest it all. I asked Sarah today whether I could do anything special for her. She said, "Just be with me." - and that's exactly what I intend to do. For all who are praying for us, please ask for strength, comfort and peace.

14 Dec - Going For The Drain Procedure

We talked to all of our doctors and are on track to have Sarah get the liver drain procedure done tomorrow. It'll be an all-day affair as she needs to get a long infusion of plasma in the morning to thicken up her blood and they want to keep her for a 23hr observation after the procedure (we've stated her desire not to get "stuck" in the hospital)

Sarah had a pretty good day and was able to eat a little here and there. She snuck in a few naps and went to bed after dinner. Her brother Thomas arrived tonight to visit for a few days and he'll be with us at the hospital tomorrow. We're relieved that we can attempt this drain procedure since Sarah is looking more yellow every day. We know a drain won't take away the tumors but it could give us some breathing room and lower the more immediate risks that come with a blocked liver.

13 Dec

Thank you for all the comments with encouragements and prayers! We'll have to wait another day to see whether the external liver drain is an option for Sarah. We talked to both her onc and to the doc that did her stent replacement today, but right now it all rests with an interventional radiologist that we know and trust. He has to physically get the CT scan images which caused a delay. We're waiting to hear his assessment on whether he thinks a drain can help. We also learned today that Sarah's bilirubin result from last Thurs was over 13, so it is continuing to rise.

Based on that it looks like her liver is not recovering function, and I can see that taking its toll on her a little more each day.

Sleepy Sarah had an ok day today. Periods of wakefulness for some short visits mixed with resting in bed. Eating has become a chore for her since it seems to give her reflux that is uncomfortable, but she does what she can. Eggs have become a favorite due to the high protein and small portion size.

Signing out for tonight & I'll post again tomorrow with an update.

12 Dec Update

Well, we've had an eventful weekend. Sarah's had some good and some tough periods. Her yellow color isn't improving and I can tell she's struggling with a high general level of fatigue and unwell feeling. I took Sam to his two basketball games and one birthday party this weekend, and we also decorated our Christmas tree together as a family on Saturday. The boys and I unpacked the ornaments and Sarah helped select the ones that we wanted on the tree this year. On Sunday we spent quite a bit of time buying a bunk bed for the boys and assembling it in Ben's upstairs room. That frees up Sam's downstairs room for Sarah to sleep in since the stairs have been getting pretty daunting for her to climb, especially in the evenings when she's already tired. It'll take some getting used to for Ben and Sam, but night #1 worked out ok even if Sam did take a long time to fall asleep.

I think Sarah's bilirubin is probably still sky high and that means her liver is likely not doing what it is supposed to, so I'm very eager to discuss with her onc what our plan is for this week. I'll be pushing for speed - very much not liking the trend and the pace of how she's feeling.

Ben seems to be holding up well, although he's definitely affected and "gets" where we are. He was so excited about the "cool" new bunkbed but then said he was sad at the same time because he realized why it was necessary for us to get it.

Well, enough for now - I'll post when we have some more news.

9 Dec - Difficult News

Sigh... the results that Sarah received this week have turned Advent bitter-sweet for us. Despite the successful stent replacement, Sarah's bilirubin did not go down and it fact it seems to be climbing. We learned earlier this week that her tumor markers are above 500, the highest they have ever been since the beginning, and a CT scan done yesterday shows significantly larger tumors in her liver and pancreas - probably have been growing slowly for some time due to intermittent chemo. It seems that her liver is not functioning properly due to the tumors and she can not tolerate any chemo, which is the only thing that could make it better. So, we may be left with focusing on Sarah's comfort and preparing together for the end. Her onc is helping us look at any and every option. One thing we'll likely try next week is to see if a surgically implanted external drain tube from the liver can bring her bilirubin down far enough to receive chemo. It feels like a long shot, but it's a lifeline that offers some hope.

Sarah and I are facing this together and drawing strength from each other, as we have all along the way so far. We also continue to be very open with Ben. It's a lot for a 10 year old to handle, but we felt that he needed to know that time may be short and very precious. What's important is that we stay connected to the present - today we have each other, today we can give hugs and share smiles and love. Sometimes easier said than done... but it's where I come back to after a wave of worry passes.

Thank you to everyone that continues to reach out to Sarah with calls and support. It means a lot to both of us! It's very comforting to have a circle of friends and family that cares so much. I'll post updates on how next week is going.

2 Dec - Update

Well, it sure got cold in Chicago! We're down in the mid 20's so it really feels like winter now.
As expected, Sarah didn't get chemo today - just the usual Herceptin. She's still yellow and has had a tough time recovering from this procedure for some reason. First she had some nausea and now she's very tired and fatigued. We hope to see her regain her normal coloring this weekend and maybe some spring in her step as well. Blood test on Monday to see if bilirubin is low enough to allow chemo next Thurs.