18 July So So

Sarah didn't get chemo last Thursday due to having a cough and some congestion. It's probably the bug that's making its way around right now - seems like most families have at least one or two members sick. So, better safe than sorry - Sarah's doc gave her antibiotics and wants to make sure she gets better before doing treatment next week. Calcium might be creeping up again - was 11.2 last week. But Sarah's energy and appetite are still better than before, and we were able to go out for a few meals this weekend. She even went to our street's block party on Saturday. Still getting sleepy in the evenings and not driving, but feeling better overall.

14 July - Eating Better

Quick update on Sarah: she's a little less sleepy and she actually got hungry today and ate a decent amount of food. Those are good signs and we should be on track to get her another abraxane chemo treatment tomorrow.

10 July

The weekend is flying by with the weather being so nice here and the boys having several birthday parties and activities. Sarah has been nestled into the couch Friday and Saturday and has been dozing quite a bit during the day. She's not sure if it is just chemo side effects or whether it feels like it did in the hospital. I think we'll have to wait and see how this coming week goes - hopefully a steady improvement with another chemo treatment on Thursday. We think that her good feeling last Thursday was probably aided by the steroids she gets along with chemo. She's been doing pretty well keeping hydrated but eating is still a struggle. The idea is to eat smaller portions more frequently but Sarah is sleeping several hours at a time and waking up still feeling full, so it is easier said than done.
It's really hard seeing Sarah like this, and it is also tough not knowing if the chemo is working to improve her condition. But there's no choice but to wait and hope, so that's what we're doing. Thank you again for everyone's love, support and outreach to us - it means tons!

8 July - Chemo and Feeling Better

Here's a picture of me with the boys and Satchmo at the 4th of July parade near our house. Lots of candy loot!
Regarding Sarah, hard to say exactly why but she is feeling better now after getting treatment today. We'll take it! She did get IV fluids, some good anti-nausea meds and also some IV steroids... but if she stays hydrated and eating hopefully this is the beginning of an upward trend. In any case, the chemo should start right away to attack the tumor sites which should start improving Sarah's condition overall.

7 July - Sarah's Home!

Sarah perked up today - she is not as sleepy and is trying hard to eat more. We can't say exactly why she's doing better but it roughly lines up with her calcium level which is holding steady in normal range so far (9.7 today) after the series of calcitonin shots she got. Anyway, Sarah's oncologist figured that she can get her rest at home as easily as in the hospital so he sprung her out today. The key is keeping her hydrated and fed, but she has a strong incentive to keep up with it: not wanting to go back to the hospital right away! She's so relieved to be home where our family can be together and the bed is more comfortable. :)
Sarah will get chemo tomorrow, so we hope that can start to address the underlying cause of how she's been feeling. We'll be watching her calcium and other blood-test results from week to week.

6 July Update

Not much new to report today. Sarah's condition has not changed except that she doesn't seem to have significant nausea anymore, but still no appetite and eating very little. Her gastro doc is considering trying an appetite stimulant and we expect to talk to Sarah's oncologist tomorrow about the overall treatment plan and resuming chemo.

5 July - Update

I took the boys (and Satchmo) to our Arlington Heights 4th of July parade today before heading out to the hospital. They had a great time and got plenty of loot/candy - and Satchmo even got some dog biscuit samples.
Sarah's doing the same as she was yesterday - my sleeping beauty. Despite her calcium coming down to 9.8 which is back in normal range, she is very drowsy and is eating very little. She woke up suddenly at 4am last night and out of the blue got sick. The docs adjusted some of her IV drugs today but other than that we're waiting to see if she can recover her appetite before deciding on any next steps to address how we can keep her nourished. And I'm pushing the oncs here to get her a dose of chemo - no word on that yet due to holiday staffing.

4 July - Not Much Better

Well, Sarah's stay in the hospital is still very open ended at this point. That pain she got in the area of her liver might be a pull of her muscles in between the ribs. The docs are leaning that way because it isn't tender to direct pressure.
Her nausea is persisting and she's still just dozing through-out the day. Calcium came down a little bit to 10.7 but it is still high-out-of-range and it is being forced down with two different drugs, one of which is a shot every four hours. Since high calcium causes nausea and fatigue and all other tests have come up negative, we think that is the cause of how Sarah feels. She needs to be able to eat and keep down food before we can think of her coming home, and we're talking about giving her chemo while she's here in the hospital since that is the only thing we can do to treat the underlying cause of her hypercalcemia (high calcium).
Sarah isn't thinking too much about the whole situation because she is so drowsy. I'm most concerned that all of a sudden we seem to be entering a new stage in the advance of her cancer when I thought we were holding our ground with the chemo she was on. I'm still hopeful that Sarah can feel better and come home if we can get her calcium under control and get her some chemo to stun and shrink her tumors. We're doing everything we can and will have to be patient and positive.

2 July - New Problem Developed

Well, instead of getting better Sarah now feels worse. Despite many tests, lower calcium levels and ok liver function test results, Sarah developed a sharp pain in her abdomen Wed night and feels even more nausea now. After a day and a half the pain is getting much better on its own even though no one can pinpoint what is causing it but the nausea remains and Sarah is pretty much sleeping all day in the hospital, trying not to move if she can help it. Threw up twice in the past day despite anti-nausea medications. The docs are doing more tests while waiting to see what other symptoms might help them determine the cause of this, but so far they are stumped. I'm spending most of each day in the hospital with Sarah and returning home to be with the boys in the evenings. Hopefully we'll find something soon that indicates what's causing her nausea and how it can be treated. Other than that she seems stable - all her blood test results look pretty good (relatively) and her fevers have not come back...

30 June - Still in Hospital

Here's a pic of Sam and Sarah in the hospital bed this past weekend. Sarah was feeling pretty good and was eager to get home yesterday, but today she felt much worse - nausea, no appetite and very drowsy. The docs think it is due to a spike up in her Calcium level. We aren't sure why that happened, but she got a partial dose of Zometa today. That should lower the Calcium level over the course of 24 hours and we hope she'll feel better again so she can come home. The onc said she can get abraxane chemo again as soon as she feels up to it, which was a big relief for us.

28 June - Not What We Expected

Sarah's doing fine after the ERCP procedure, but it didn't go quite as we expected... The bad news is that the doc was not able to replace her stent but the good news is that he clearly saw bile exiting her bile duct so the stent is working fine. Apparently sometimes a patient's stomach and upper intestine can be twisted and prevent access with an endoscope designed for stent work. He tried for an hour and it just wasn't going to happen today. We can definitely try again, but it sounds like the stent is actually designed to last for up to 6 months. Now that we consider it, this stent is on the wide side and the doc was happy he was able to get it inserted 3 months ago - so if it is not plugged, we're better off leaving it in for now!
So since IV antibiotics have actually improved her liver function over the weekend (her bilirubin is already down to 0.8 again) I think we'll focus on treating a potential infection and try to get her liver numbers down low enough to allow chemo again. We plan to talk to Sarah's oncologist tomorrow and discuss how long she needs to stay in the hospital and what the plan for treatment is.
Sarah bounced back quickly after the procedure and is feeling pretty good now.

27 June - Update on Sarah

Quick update: Sarah spent the weekend in the hospital, but her condition is still a mystery. Her bilirubin got up to 2.2 but then started dropping on it's own yesterday. Fever has also not been a problem since she got admitted to the hospital last Friday. She's feeling relatively ok - now well hydrated and getting two kinds of antibiotics plus anti-nausea meds (although still not sure if they are actually helping). Since it's time for the stent to come out, we're going to proceed with the ERCP to replace her bile duct stent on Monday. Small chance she'll be back home Monday. Tues is more likely. Hopefully this will enable her to feel better, or it will head this requirement off at the pass.

25 June - Back In Hospital

Well, it's been quite a week and now Sarah is in the hospital. Yesterday we got the results of her MRI. Overall it was good news since the big solitary liver tumor was not visible (although quite a few small ones were there) so it seems that Abraxane is doing some good. But despite that, Sarah has been gradually feeling worse and her doc thought it might be her stent that needs replacing, so we set up a procedure for next Monday to have it replaced. Because of that she also didn't get chemo again yesterday. Today her wandering body temp kicked in again and she got up to almost 103 plus she had some nausea. Since that's higher than it has been and she basically stayed in bed all day, her doc told her to go to the hospital. So she's been admitted and they are going to try and figure out why she has an elevated temp. The ER doc decided to run a port culture to see if it was infected - that would definitely explain the elevated temperatures Sarah has been running for over a month. She got a whole battery of other tests in the ER so we'll see what they show.

12 June - F.A.B. 5K!

The F.A.B. 5K was a huge success with great turnout of almost 300 people and $15,000 raised to benefit the Breast Cancer Research Foundation!
Lesley, Bonnie, Kelly and Melanie (organizers) - you are awesome and we can't thank you enough for doing this for Sarah, for your loved ones and all other women who face breast cancer. It is so uplifting to take part in something positive like this amidst the day-to-day struggle with treatments, doctors visits and the unrelenting uncertainty. And a huge thank you also to the many volunteers and people who came out to participate. What a moving experience it was!
In these pictures that I was able to take, you can see Sarah at the starting line, Sarah in the pace car with Dave L., and a picture of Kelly and Bonnie (how did I not get a picture of Lesley and Melanie!?). There's also a video of the race start where you can see the many people that participated in the race.
After the race, Ben, Sam and I headed up to an Indian Guides campout which was very muddy but also very fun. One of the few times I'm comfortable telling the boys, "sure, get as dirty as you want - go nuts and have fun with it!" But we did have some "battle damage" - Ben's usual upset stomach from over-indulging on the junk food buffet and Sam's burnt finger from touching something that was hot from the campfire. Well, overall it was a great campout.
Quick update on this past Thursday as well: Sarah's body temp started getting over 100 on Tues and Wed so the doc had her take a week off of chemo and prescribed some antibiotics in case she had a low-grade bug or infection. When her temp gets up there, Sarah really doesn't feel good and it makes for a tough day. We're hoping that she'll get some relief and feel a bit better after this week.

11 June - Sarah's Birthday!

It was a very eventful day today. Among a few other things like having the last day of school and getting a dog, the most important thing is that we celebrated Sarah's birthday! Here she is about to blow the candles out. She really enjoyed the phone calls, cards and flowers that people brought by. And it was also nice that her brother Thomas was in town to celebrate with us. We finished the day by looking at some pictures from Sarah's childhood using a vintage slide projector and real slides.
We also have an update on Sarah's CT scan results - they put a little bit of a damper on the good news about tumor markers being down. The CT showed shrinking tumors in all areas except her spine and especially her liver - quite a few new spots showed up in her liver on the CT, but she's getting an MRI to confirm and get more detail. In the mean time we're going to continue the Abraxane treatments for her until the MRI results are in. She got treatment again yesterday and is feeling decent but a bit tired tonight. Big day tomorrow with the F.A.B 5K first thing in the morning!

11 June - Got a Dog

Well, we took the plunge and got a new dog. After meeting several dogs we settled on this guy - Ben didn't seem to have any allergy issues, he's cute and just the right size, and he seems sweet and playful with the kids. Here's a video of him. We decided to name him Satchmo, which is the nickname of Louis Armstrong the famous musician from Sarah's home town New Orleans! In a funny coincidence, Satchmo's birthday is the same as Sarah's - he is one year old today. :)

9 June - Finally Some Good News!

Sarah's tumor markers and circulating tumor cell test somehow didn't make it through the test lab last week but they took a fresh blood sample last Thurs and we just got some good results back! Sarah's tumor markers are down significantly (CEA and CA27.29 are both down by around 100). And the circulating tumor cell test came back with zero, which is the best number you can have. So, it looks like the Abraxane treatments are doing some good and we'll continue them.
The other big test result we're awaiting is her CT scan which we'll know about tomorrow. Need to see if the large liver tumor is responding to treatment or not. Given the lower tumor markers, we're cautiously optimistic.
Sarah continues to feel a little better each week although her body temp still goes up and down periodically. She's gotten out to do some shopping now and then and also has attended some of the boys' sporting events. I think she really enjoys the freedom of feeling good enough to get out of the house every once in a while!
We're conscious of the fact that Sarah still is in a weakened state overall, but this positive trend feels good - definitely much better than the dire straits of the past few months.
We're looking forward to the F.A.B. 5K fun run this weekend where Sarah will ride in the pace car! If you haven't see it, check out the blog for it. You can donate even if you aren't running it - and all donations go to the Breast Cancer Research Foundation. http://fab5k.blogspot.com

31 May

What a busy Memorial Day Weekend. I'm more exhausted now on Monday night than when it started! Had quite a honey-do list and made it through just about everything. Ben had his last cello recital this past Tuesday and played very nicely. Although stopping cello is the right thing for him at this point, I know he'll miss his great teacher Mrs. Hagari (in the picture with him) and the friends he has made in the music program along the way. The other picture is of Sarah and me in the audience.
Sarah got another Abraxane treatment last week as planned and we'll find out this coming Thursday how her tumor markers look and we should also get results from a new test that determines the level of circulating tumor cells in your blood. Based on these results, we'll talk to her onc about what the treatment plan is. Sarah is feeling some numbness in her hands and feet, which is a side effect of Abraxane - but she says it is still manageable at this point. It's worth it if the Abraxane is helping, and the numbness should not be permanent.
Sarah's body temp is still fluctuating and it's hard to know whether she'll feel good or not on any given day, but today we did all go to the local Memorial Day Parade together. Ironically, we got a heavy rain shower right as the main part of the parade was in progress! But that wasn't too bad and the rest of the day was fun, including a post-parade barbeque/party in the afternoon.

25 May - Just In Time For The Warm Weather

Sarah did end up asking me to shave the rest of her hair off last Saturday - just in time for the sudden heat wave here in Chicago! So here's a pic of Sarah sporting the latest summer fashion in our backyard and sitting at the sidelines of Sam's soccer game this weekend. Sarah is still getting sporadic fevers which make her want to lay down and rest, but she felt better today and got out to do an errand.

21 May - Another Chemo Week

Not much new to report this week. Sarah got Abraxane again on Thursday along with Herceptin. She's feeling fairly good except for some fatigue probably due to a low red blood cell count, so she got a booster shot for that. She still has a fever most days ranging between 99 and 102. Her doc says that could be due to the liver tumor cells dying off - we like the sound of that! It could also just be due to the presence of liver tumors in the first place, though.
The Abraxane is finally taking its toll on her hair which has been falling out much faster this week - I think she'll want me to shave her head this weekend. Sarah doesn't like the feeling of it coming out when she runs her hands through her hair - better to just get it over with in one shot. Next week they'll run her tumor markers to see how she's responding to the Abraxane. We'll get the results in the following week and talk to the doc about getting scans and whether to continue on Abraxane or switch to another chemo drug (hopefully continue!). Her liver seems to be tolerating the Abraxane well - her liver function numbers are only slightly above normal range.
Ben and Sam are doing great. Coming up on the end of the year. Ben has a cello recital next Tues which will end his cello career for a while (pending desire to resume at some point in the future), and Ben and Sam are both looking forward to our Spring campout coming up soon right after school ends. I think we'll start them both in a local karate club this summer and Sam is still insisting he wants to take guitar lessons next year, so we might be doing that.