28 Sept Update

Sarah didn't get chemo last Thursday which is what we were planning, but her white blood cell count was low anyway so it wasn't an option. She's gaining strength physically but her bilirubin is up to 2.8 and her neuropathy is pretty bad despite taking a few chemo breaks. Sarah can't feel much in her hands and feet and that's one of a few things making her more anxious about how things are trending. The doc gave her some Adavan to take as needed to smooth things out when the anxiety gets too hard to ignore and that has helped.
On the flip side, Sarah has been walking up and down the stairs on her own more often to build strength and even walked down the street with a friend today while holding on to the wheel-chair for support. She hasn't been able to do that for a while, so I consider that a real victory! The plan is to get Abraxane one more week if possible and then talk to her doc next Thursday about what other chemos we could try that don't have nerve damage as a side effect.

20 Sept Update

Sarah got chemo last Thursday and has continued to build a little more strength. Still not putting on weight yet but she's trying to exercise and eat more in order to get that turned around. We were fairly active over the weekend - Sarah came out shopping with the boys and me. Browsing in Costco is always interesting, and she hasn't been able to do it for quite a while. We made use of the electric carts that stores have so she didn't have to walk, but it was tough to keep the boys off the carts. They really wanted to drive them!

15 Sept - Update

We had our new nanny Donna start this week and things are going well so far. We put her to the test right away since I had to go on a short business trip (just got back) but everyone survived ok.

Sarah's feeling some of her strength come back very gradually. Good trend! She's able to make it up and down the stairs with no help now, which is a huge step forward in terms of feeling a little more independent again. There are so many little things that we often take for granted. It's a victory for Sarah to be able to walk up steps (slowly!) normally rather than place both feet on every step and pause for a breather on each one. Chemo this week didn't make her feel too bad and since her C.Diff. toxin test came back negative, she can stop taking the antibiotics for that. We'll be vigilant for signs of the C.Diff. recurring - we've heard that it typically happens a few times before it's really fully cleared up.

11 Sept - Got Chemo

Sarah got an Abraxane treatment this past Thursday, which is good news but something she at the same time was not looking forward to. It will be a tough weekend for her as the effects of the chemo kick in, but hopefully well worth it in terms of fighting back. Sarah is still very weak but we think there's some improvement in her strength. As the C.Diff. infection slowly goes away, she should be able to gain more energy. A test is in progress to see if the C.Diff. is still active and we should see the results on Monday.

6 Sept - Labor Day

Catching up with some pics. You can see Ben's and Sam's first day of school, Ben on a paddle boat this weekend, and our Labor Day cookout meal in the back yard. It was a very nice day so we got to spend some time outside! Sarah laid pretty low this weekend but enjoyed having a few friends visit to catch up.

3 Sept - No Chemo This Week

Sarah went for treatment yesterday and go her weekly Herceptin but no chemo. Her body is still too weak and she's not yet fully recovered from the C. Diff. infection. As we look back and do more research, it's possible that most of Sarah's recent symptoms can be explained by the C. Diff., which is actually good news since we know that it is treatable. C. Diff. is a tough infection to shut down completely, but with several longer courses of a certain antibiotic it should go away (which she is taking now) - and Sarah should be able to gain some strength back and recover her Albumin level and blood counts. We'll have to be patient. Hopefully next week if her gastro process is working better we can get her a chemo treatment.

We'll be spending the 3-day weekend close to home so everyone can relax and recuperate.

1 Sept - Sarah Home From Hospital

Sarah's oncologist decided she should be fine at home and approved her discharge from the hospital. I brought her home tonight. She's still feels pretty weak - more than before we left the house last Friday - and she'll have to stay on the special antibiotics for 2 weeks in order to try and clear up the C. Diff. infection. Could be she's had it for a while and it is possible that it's been taxing her system the whole time. We're hoping that clearing it up will allow Sarah to gain some strength back! Her blood test results still have quite a few "low" values but they steadied out and with the right nutrition and a cleared up system we also expect those to creep back into their normal ranges over time. For now, Sarah's just happy to leave the hospital and be back home - even though the stairs do look pretty daunting to her.

31 Aug - Update

I spent the evening with Sarah in the hospital today and she's not feeling too bad except for the edema (swelling) all around being very uncomfortable. But her blood test results have a lot of low out-of-range values, so we're not sure when she'll be able to come home and we're also not sure what's causing that. Tomorrow her oncologist will be coming to see her and we'll have quite a few questions for him.

30 Aug - Stent Replacement Went Well

Sarah just came out of her stent replacement procedure. Despite the fact that they gave her a general anesthesia this time, she's feeling pretty good (relatively) after it. The doc was able to remove the old stent, clean out the bile duct and place a new stent of the same size - so it was a full success from our perspective. This will eliminate a possible source of infection and make sure that her liver continues to drain well. The oncologist said that now they'll focus on stabilizing her potassium, calcium, etc so she can go back home - the estimate is Wed and we'll try to beat that. :) She's on three antibiotics, so hopefully that will clean up the C. Diff and anything else causing trouble.
Ben and Sam each had a great first day of school and they are excited about their new classes and teachers. "Grandpa and Oma" have been a big help in taking care of the boys while Sarah's been in the hospital!

29 Aug Update on Sarah

Sarah's got some complications that are going to keep her from coming home from the hospital yet. She tested positive for a GI infection called C. Diff - it's often seen in immuno-compromised patients that take antibiotics. It can be dangerous if not treated and is easy to spread to other patients in the hospital, although it's not as serious for healthy individuals. As a precaution, she is in "isolation" which means anyone in her room has to wear gloves.
Her potassium is now back in the normal range but they want to see if it will hold there or just come back down. Other test results are out of range as well, so I think we'll need have Sarah stay for observation - her albumin is low which causes swelling (edema) and her calcium is now really low at 6.5. Not likely she'll get the stent replacement done tomorrow but we'll have to wait and see. The C. Diff. infection could be related to the stent since it's been in for a fairly long time.
Sarah's very sleepy today and has been dozing hard this afternoon. Reminds me of the last time she was in the hospital - a pattern that I hope we don't fall in to this time.

28 Aug - Staying in Hospital

Well, Sarah kind of got "stuck" in the hospital again. But we both think it's good that she's here in terms of getting the care that she needs. Her potassium is stubbornly refusing to go above 3.0 (3.5 is actually the low end of normal). She's getting her third bag of IV potassium and even took some orally last night. The docs took her off antibiotics in order to try and stabilize her potassium levels first, and in the mean time they are taking some stool and blood cultures to check for signs of infection. Sarah feels more or less ok - just waiting for the tests and IV fluids. The GI doc also has recommended that she go ahead and get her bile duct stent replaced while she's here in the hospital. That would be either Monday or Tuesday, so if that happens then I'd estimate she'll be here through Tues or Wed - longer than the "23hr admission" we were expecting yesterday!

27 Aug - No Chemo Again

Well, Sarah didn't get chemo again this Thursday. She is having intermittent fevers again and gets severe chill/shiver episodes every day or two that last up to 20 min. Doc believes she may have an infected bile duct stent so Sarah skipped chemo and is doing antibiotics again. If the fevers don't get better then we'll probably make another attempt to replace her stent in the coming week. Her potassium also took a nose dive this week so we're spending friday evening at the hospital getting her a potassium infusion. Right now we're waiting on her blood test results to see if I can take her home tonight. If not, she'll have to stay the night and get another infusion, but we expect her stay in the hospital to be under 24 hrs.
Sarah's overall state of feeling bad is still hard to explain, especially given the good blood test results she just got earlier this week: her tumor markers are down and liver function tests came back looking pretty good. But she feels like somehow her body isn't regulating stuff very well like body temp and some body chemistry (calcium, potassium).
On the nanny front, we were sad to see our nanny go but have been fortunate to quickly find someone to take over. She starts in two weeks, right when my parents head back to San Antonio.

22 Aug Back From Vacation

We just got back from a great summer vacation in Florida (Rosemary Beach near Destin). Even though Sarah's mobility was limited by her low energy and tiredness, with the help of a wheelchair and some extra travel time built-in we were able to have a great family vacation together as you can see! Sarah's brother Thomas as well as Kerry and baby Jane were with us, as well. We went out a few evenings for dinner on the town and during the day Sarah sat by the shore while Ben, Sam and I played in the waves - but Sam much preferred the swimming pool. In one of the pictures he's doing a great "nestea plunge" even though he has no idea what that expression comes from. :) We also went to the beach-side bar for ice-creams and beverages to enjoy the beautiful scenery. We are very thankful that we could work out a time between treatments and other commitments to get away for this trip.
After returning last Wednesday, Sarah did her Herceptin treatment on Thurs but did not get chemo - this time because of neuropathy symptoms. The concern is that if you push it too hard with the chemo then temporary neuropathy (numbness in hands & feet) can turn into permanent nerve damage. Strangely, Sarah's calcium level swung to the other extreme and is now low out of range, so she started taking calcium supplements. We're on track to get her chemo this Thursday, we think. Overall, Sarah is not feeling too good. She get's exhausted very easily which is frustrating for her, and it is hard to imagine that her condition will improve when we are not sure what specifically is causing it.
The boys are staying busy - Ben loves his new Karate classes and Sam is starting his guitar lessons next week - we just got him a guitar this weekend which he is very jazzed about! Another change is coming on the nanny front: Marie, who has been a great help to us over the Spring and Summer, was lucky to get a teaching job at a school in the area so we're searching for a new nanny. We've got some leads and are starting to interview some people next week. My parents will be staying with is for a while until someone new can start.

11 Aug - Update

Sarah has been feeling pretty bad so we had a very low key weekend this week and then I went on a quick business trip Monday and Tuesday. But, with a new dose of hydrocortizone and some pro-biotics, Sarah has actually perked up and had more energy over the past two days. We got a wheel chair for her so that we can take her out without her having to walk far, which can be quite a struggle. The doc wants her to recover some more of her strength so we're going to take one week off from chemo. She'll get herceptin and zometa tomorrow on her regular treatment day.

4 Aug - Catch Up

Lots of happenings at our house as you can see. One pic of Sam posing with his baseball gear (although the bat is too big for him). A pic of Sarah and also our friends Jeff and Jen last weekend during their visit. Jeff thought it would be cool to take a picture of me while I was taking a picture of him. Wonder how his pic turned out? And finally the pumpkin vine growing at our front door... we had a giant 140 pound pumpkin in our front yard last year that Sarah won at a Trader Joe's contest around Halloween. We figure one of the seeds must have accidentally landed in one of our flower beds and started growing a new vine - and now we want to see if it will produce giant pumpkins or just regular sized ones!
An update on Sarah: she hasn't been feeling very good over the past few days but it's hard for her to describe how she feels. Mostly it seems to be fatigue and a lack of energy. She got booster shots for her red and white blood cells last week, so that's probably part of it. The plan is for her to get chemo tomorrow and we hope that the continued chemo will provide systemic whole-body treatment that improves her health over time. There's nothing more we can do right now but carry on and see how she feels after a few more weeks of treatment. And the next scan and tumor marker test should also tell us if the Abraxane is helping her.

30 July - Update

Boy, this week flew by! Sarah's doing so so. She had a rough weekend with nausea and fatigue but that resolved itself starting Monday. She got chemo treatment yesterday and is doing ok so far. We got her tumor marker results yesterday and they are higher than before, but that is not unexpected since she had some significant gaps in treatment over the past 2 months. With more frequent treatment we hope they'll come back down. Calcium was 11.0 and is drifting up and down from week to week - it's high but probably tolerable as long as it doesn't start rising higher.
College friends Jeff and Jen (with Erica) are here visiting until tomorrow and TJ and Joyce plus their boys came up to join us for a dinner of fun and catching up. Ben and Sam are fine - they have enjoyed going to camp this summer but I think they are kind of looking forward to wrapping that up, plus we plan to head out for a short vacation after camp ends. They are really stoked about that and can't wait.

22 July Chemo Day

Sarah was well enough to get chemo today, although she seemed exhausted already before even getting treatment. Based on her blood test, it was probably low counts that were causing that - she got another blood cell booster shot this week (procrit).
Although Sarah is feeling a little better, she still sticks mostly to the indoors. Intermittent naps and facebook time. :)
The boys are doing well. The summer is flying by for them. Camp keeps them pretty busy along with activities that Marie takes them out to, and we've managed to have a good amount of play-dates as well.

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!