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.

30 Nov - Stent Replacement Went Well

Sarah had her bile duct stent replaced today and it went well. Her bilirubin was at 7.1 before the procedure (normal is below 1 and must be below 3 to get chemo). The doc said the old stent was definitely 100% clogged and he was able to put a new permanent metal stent in that should not clog and is about 3 times as wide. Sarah came through it fine although she's dealing with some post-anesthesia nausea tonight. Over the next few days her yellow coloring should fade away and by next week we hope her bilirubin will be back in range so she can restart her chemo treatments. On the not-so-good side, the doc did notice that the upper ducts were much smaller than earlier this year, presumably because of outside pressure from liver tumors, which are also are putting pressure on her stomach and small intestine. Looks like Sarah's liver mets have progressed, which we knew might be the case since she's only been able to get chemo on and off due to a string of other issues - C.Diff. neuropathy, colds/infections, etc. We plan to discuss this with her oncologist and ask what our best options are for chemo treatment. At least for now we are fairly confident that her critical bile duct issue is resolved and she can feel better soon as we head into the Christmas season.

29 Nov - Another Bile Duct Stent

Sarah is scheduled to get her bile duct stent replaced tomorrow (Tues). Her bilirubin was 7.5 last Friday which is already sky-high and it probably went up over the weekend. Despite the high number and her yellow eyes and skin, she's managing ok and the plan is to have the procedure tomorrow be outpatient. The doc says Sarah should get a metal stent this time vs. a temporary plastic one since the permanent kind should not clog up like the past ones have. Sarah was relieved that we could get this scheduled right away on Tuesday.

27 Nov - Thanksgiving

We enjoyed our Thanksgiving meal with visitors Elizabeth, Thomas, Kerry and our niece Jane. Here we are, ready to dig in!

Today on Friday, I went to treatment with Sarah. She didn't get chemo again because now it looks like her bile duct stent may be plugged again. We started noticing day before yesterday that her eyes were getting yellow and it is much more noticeable today, plus her skin is getting a yellow tint. It's likely that we'll have to take Sarah in for a bile duct stent replacement some time in the coming week, but hopefully it will be an outpatient procedure. She's feeling tired but decent overall, and she was really happy to be able to celebrate Thanksgiving at home and enjoy the meal!

21 Nov Update

First some pics from Ben's birthday last week. One with Sarah and Ben and another of Ben blowing out the candles on his cake.

We've had an eventful week. Ben's been playing with his birthday presents, especially the Sony PSP game console he bought himself with some of the gift money he received. He also bought himself a "Rip Stick" caster board (a kind of skateboard) and has quickly gotten the hang of using it - can't keep him inside; he's really determined to master it. Sam got some new things as well after we realized he still had some gift cards back from his birthday - I took him out shopping and he got to pick some things for himself as well!

An update on Sarah - she didn't get chemo again this past week, which we were not happy about. Her white blood cell counts were very high and she was clearly fighting off some bug, so the doc gave her antibiotics and said we have to take another week off. If she's doing better, we're expecting that she can get another chemo treatment this Friday right after Thanksgiving. Overall, Sarah's not feeling too good this week. The neuropathy is making it challenging for her to stay steady on her feet. She's stumbled and fallen twice in the past two weeks. It's still ok if she takes her time walking and is careful - I know Sarah would rather do that than go back to using the wheelchair right now. We were excited to hear that a new drug called Eribulan has been approved for breast cancer treatment, but it also has neuropathy as a side effect. Sarah's profile fits the new drug's treatment focus, so there's a good chance she'll try that when it is time to move off the Abraxane.

13 Nov - Ben's Birthday

First a quick update on Sarah - she didn't get chemo this week since she and her onc agreed that she needed a week off to let her body recover a bit. Neuropathy seems to be getting a little worse. But her blood test results are coming back good and holding fairly steady.

So Ben's birthday was today and he had a great time. He got some birthday wishes via phone and was also able to have a part this afternoon at the movie theater (we saw the new movie "Megamind"). And he reached his goal of buying a new Sony PSP game device - with the help of his monetary birthday gifts, we've already ordered one and now he can't wait to get it! :) I'll get some pictures of the birthday uploaded but I'm having a little camera trouble that I need to resolve first.

5 Nov - Chemo Day

Sarah got another 80% abraxane treatment today. Her blood test results were again fairly good so we're hoping that the chemo is helping her. Sarah's doc said we should get scans after 6 treatments have been completed - so 2 more. But if her tumor markers continue to go down, he's thinking there really isn't a need to do a scan yet - although we want to know how things look in her liver, it makes sense since the results of the scan would be unlikely to change her treatment if markers are dropping.

We've got a busy weekend coming up with some activities for the boys and taking down the Halloween decorations... :) And we'll lay low some of the time, too. Since it's the fourth week in a row, it looks like the chemo is hitting Sarah a little harder this week - she got very tired after treatment today and crashed early tonight.

4 Nov - 3-Day Walk For The Cure

Sarah's friend Nicole is doing the Susan G. Komen 3-Day Walk For The Cure in Dallas. She's got a picture of her and Sarah at the 3-Day walk last year posted on her donation page at http://www.the3day.org/goto/Nicole.Smith - and please consider supporting the cause while you're there! The walk is this weekend but donations are also accepted for a period after the race.

Sarah should be getting another 80% chemo treatment tomorrow. She's feeling about the same as she did last week and we're hoping that the chemo treatments are doing some good in shrinking her liver tumors. We won't know for sure until Sarah gets another CAT scan, which we need to talk to her doc about.

28 Oct Update

Here's a video of Sam at his 1st grade music program, singing a song called Witches Brew. Ben's doing well, too. He's continuing with karate and also busy with many school projects. 4th grade is really ramping up on homework and at-home projects!

Sarah got an 80% Abraxane dose again yesterday and her neuropathy has held fairly steady (maybe just a little worse). She also got tumor marker results yesterday - her CA27-29 and CEA were both around 250. That's a bit high for CEA but not for 27-29. Basically, it's not a lot lower but also not a lot higher than they were before, which didn't surprise us since she's only intermittently been able to get treatment. Overall, we see it as good news and indication that we're holding ground despite the challenges with C.Diff.

Sarah continues to build energy and maybe some strength, too. She's driving more and walking short distances. Hasn't used the wheel chair in the last two weeks. :)

24 Oct - Eventful Weekend

First an update on Sarah: although her neuropathy didn't get worse, it also didn't get better. But that and a little weight gain plus decent blood test results allowed her to get another 80% Abraxane dose last Thursday. She felt relatively ok over the weekend and continues to feel more energetic overall. Our plan is to keep on with this chemo as long as her neuropathy doesn't get worse.
The boys have had quite a weekend - we went to the Fall Indian Guides campout where Sam tested for the "Haylushka brave" qualification and passed. He worked hard to memorize many things for the program over the past few weeks and we also did several projects together that were part of the Haylushka requirements. In one picture you can see him proudly pointing to the official Haylushka hat that he gets to wear to Indian Guide events now! :) In the other two pictures Sam is enjoying a cup of camp cocoa and Ben and I are checking out a tee pee that was set up at the camp.
In the last picture, Sam is next to our big pumpkin. It didn't get as large as it's parent, our giant pumpkin from last year, but it does seem large for a pumpkin that hasn't received any special care and nurturing. Just in time for Halloween!

17 Oct - Sarah Got Chemo

Overdue for an update! Sarah's C.Diff. test was negative last Thursday and her weight seems to have gone up 2 lbs. Her gastro stuff hasn't really returned to normal, but based on the negative test the doc went ahead and gave her an Abraxane treatement, which is a relief for us. Due to continued neuropathy, she got an 80% dose so we can see if it makes it worse or not. But that's still pretty good. Sarah is perking up a bit now and seems more energetic. She's also in a less anxious mood now, which is a relief for her as well.
On an unrelated note, the rest of us are under the weather big time. Sam caught some kind of stomach bug on Friday and was throwing up most of Friday night. Now Ben and I have it as well - but Sarah's got no symptoms so far. We're keeping our fingers crossed!

12 Oct Update

Quick update on Sarah: she's feeling stronger and her weight held steady this week, but other symptoms of C.Diff. are persisting. She'll get another C.Diff. toxin test tomorrow to determine whether she can get chemo this week. We don't like having to take this multi-week break, but the doc said chemo treatment during a C.Diff. infection would put her in the hospital. If her test is negative, we'll have to see if maybe something other than C.Diff. is causing her digestive tract issues. We'll know more later this week.

1 Oct - No Chemo Again

Well, we went to see the doc treating Sarah's C.Diff. this week and were surprised to discover that she tested positive for C.Diff. again - so, now Sarah's taking the other antibiotic called Vancomicin. She's still slowly losing weight, and her oncologist doesn't want to give her chemo while she has an active C.Diff. infection - so it is very important to get this to clear up.
Overall, Sarah is struggling to improve. Trying to build strength, but her body's reduced nutritional absorption (due to C.Diff) and worsening neuropathy make it a challenge. She's eating fairly well but it just goes right through her body because of damage to the lining in the intestines. Over the next week we'll be anxiously watching whether the C.Diff. starts to go away. Not likely she'll get chemo next Thursday but we are going to talk to the doc about the overall chemo treatment plan for when she can resume it.
On the bright side, Sarah's bilirubin level came down from 2.8 to 1.8 which is good, and her tumor markers are only up a little bit from the last check despite intermittent chemo treatments.