30 March - Radiation Starts Tomorrow

Ok, we had our appointments and everything is on track. Sarah starts radiation treatment tomorrow and we're still planning for her to get chemo on Thursday. What a week...

The goal of the radiation is to prevent dangerous bleeding and to hit the "pause button" in terms of tumor growth. The doc said that a dose to wipe out the tumors would have to be much higher and was not an option. Sarah still doesn't feel too hot, but definitely better than before the bile duct stent was put in. I'm going to drive her to chemo treatment.

Ben and Sam are having fun in school so far this week after being out for Spring Break for so long. And they love having Uncle Thomas, Aunt Kerry as well as baby cousin Jane in town, and also of course the grandparents! No shortage of attention there.

28 Mar - Chemo and Radiation Week

Strange to think this way, but we are glad (?!) that Sarah will be able to do another chemo treatment sooner than we thought thanks to her bilirubin coming down to 2.2 last week. Plan is to do Taxol again this Thursday, which is better than waiting another week. But before that she may begin radiation treatment for her abdominal mets in the uterus/cervix - could start Wed and should be either 2 or 3 weeks long at 5 days a week.

Sarah is holding steady, feeling better than a few weeks ago but still easily fatigued and keeping physical activity to a minimum.

Ben and Sam are keeping busy with dad, grandparents and Uncle Thomas all doing things with them over spring break. Thomas even took them to Medieval Times today which was a huge hit. :) Live fighting and eating with your hands - what could be better? They also enjoyed going to an outdoor historical farm and grounds called "the Grove" with oma and grandpa.

24 Mar - Bili Down

Well, a mixed bag today... the good news is that Sarah's bilirubin is solidly trending down, which means her liver function is improving. We learned yesterday that it was 3.3 last week and today we got the results of yesterday's bilirubin: 2.2! It is great to know that it is below 3 and now we'll ask her onc when she can start full-strength Taxol treatment.

On the flip-side, Sarah's biopsy procedure today confirmed that breast cancer has spread to her uterus - and it apparently has invaded quite a bit. In order to limit the risk of hard-to-stop bleeding from the tumors, she needs to start a course of radiation to that area asap. We'll be seeing a radiation onc tomorrow to get that started.

Sarah is feeling a little more energetic thanks to her improved liver function and we continue to take things one day at a time.

22 Mar - More Challenges

Sarah has been feeling a bit better the past few days. Maybe the chemo has already provided some relief, but it's hard to say. However, there's now a new challenge to pile on top of the situation: the docs discovered additional tumors invading her uterus...

Although we don't think these are immediately life-threatening, they do add to the overall "tumor load" on her system and show that the cancer has spread more than we realized. She's going in to have these tumors biopsied this Wed and we'll know more about what this means after that. And we are hoping that the Taxol will also fight these new tumors.

Sarah really enjoyed a visit from her out-of-town friends Nicole and Shelby over the weekend! And of course also the visits from our Chicago-area friends as well. Her brother and family will be back to visit again at the end of this week.

Thanks again for all the love, prayer and support from all sides. It means more than you can know and helps us through each day.

19 Mar - Sarah Got Some Chemo

Long day yesterday... but we were able to get Sarah a dose of Taxol, although at the reduced dose. This means that her liver can not process a higher dose, but also the Taxol will stay in her bloodstream longer and possibly cause more damage to cancer cells, which would be good. The doc said he can give her this lower dose every three weeks as long as bilirubin stays under 7. So we will be watching the bilirubin trend very closely as Sarah gets her weekly blood tests. It's got to start drifting down for us to have a shot at turning this situation around.

So far, Sarah's feeling ok after the Taxol dose. More tired than usual but not much nausea. Her hair probably won't fall out for at least another week.

17 Mar - Bilirubin Not What We Hoped For

Sarah is still feeling pretty weak and not able to do much. Today Sarah got the results of her blood test and bilirubin was 5.3, well north of the 3.0 that we were hoping to get below. So I think our meeting with her oncologist tomorrow will be very important in understanding what we can do to fight progression. Our hope is that she can at least get a partial dose of Taxol to shrink some of the smaller tumors in her liver. That could open up some biliary ducts and improve the situation enough to increase the Taxol doses.

We're focusing on the hope that her situation can improve, but also very aware of the dangerous path she is on right now.

14 Mar - Headed Home

Sarah's being released from the hospital today - she's definitely feeling better than before so the ERCP has helped. Her blood test this morning still showed bilirubin hovering above 4 but we're hoping that was due to the fact that she got an infusion of blood yesterday and it is still possible it could drop below 3 later this week. The plan is still to start chemo on Thursday, at whatever dosage her liver allows - that's our most important next step for Sarah.

13 Mar - Promising Trend

Looks like the ERCP really helped Sarah's liver. Her first blood test this morning after yesterdays procedure showed a promising trend: bilirubin is down to 4.2 and the other liver function numbers have also improved. Sarah is feeling better this morning and she'll be able to come back home after receiving a unit of blood to boost up her counts and also a CT scan of her liver and surrounding abdominal area. Based on the ultrasound, we expect to see quite a few large tumors but at least we'll know what we're dealing with. If bilirubin gets down below 3 by her next blood test on Tuesday, then we hope to get Sarah started on Taxol this coming Thursday.

Still very worried but this is a good first step in the coming fight and has bought us some breathing room.

12 Mar - ERCP Went Well

Sarah's ERCP procedure went as well as we could have hoped today. Apparently she has an unusually narrow bile duct (go figure). The doc pulled her old stent out, which was on the small side to match her bile duct, and it was in fact plugged up. He was able to place a significantly wider stent so we're hoping that she'll have much better flow which translates into improved liver function levels and a bilirubin level below 3 (it's 8.6 right now which is super high - normal high limit is 1). Sarah's feeling fairly good and is just recovering from the narcotics. She's even hungry and was hoping to get in a good dinner but her doc ordered full liquid diet only.
So now we'll have to wait for a few days and see what her bilirubin level does - that will determine what we do next. The gastro doc that did her procedure did see indication of the liver tumors pressing on some of the biliary duct tree in the liver and he also saw some likely tumor tissue in the head of the pancreas where the bile duct passes through. We're hoping that Taxol treatments can beat those back and shrink them.

11 Mar - Big Day Tomorrow

Update on Sarah - we went to see her onc today. She felt really weak and could barely walk. Her blood "thinness" was off the charts high (ie thin) because the liver normally produces blood coagulants and apparently has not been doing that. So, we spent all day getting her re-hydrated and pumped up with blood plasma to get her blood back into the normal range - required in order to have the ERCP tomorrow to replace her stent and inspect the bile duct system. The plan will be to get her on chemo asap with as high a dose as her liver will tolerate. There's only one chemo drug that stresses the liver the least and has shown some effectiveness for Sarah and that's Taxol. On the bright side, Sarah perked up significantly after all the fluids and had a spring to her step on the way out of the clinic today.

So the big day is tomorrow (Friday) - the status of her bile duct and our hope to bring her Biliruben level down will determine how much chemo she can get in order to fight the advance of her liver tumors.

Today also marked a very tough event for us -- we sat the kids down and used the d-word ("die"). We both felt it was time to bring Ben and Sam fully into the loop on the fact that Mommy might not get better this time. They seemed shocked (there were tears) but also a little relieved that we finally shared this with them. With all the new anxiety in the air and the way Sarah looks/feels, I know they had a sense that something new was going on. It was also important for them to feel informed and be reassured that we were doing everything we could and that they would be cared for no matter what. And that it was ok to talk about their fears and share their feelings with us.

Thank you so much to everyone that has reached out to us through emails, visits and calls. Although I haven't been able to respond to everyone yet, the overwhelming show of concern has touched us both deeply and comforted us.

10 Mar - Alarm Bells

We received the results of Sarah's liver ultrasound and they were very alarming: multiple tumors with the largest at 6cm. That's huge - Sarah's onc told us a while ago that 6cm is around the size where tumors develop internal "pressure" and often stop responding to systemic treatment. So even if we can get Sarah back on treatment, that larger tumor will still likely be a problem.

This week and next will be dedicated to pushing Sarah's doctors for all options available to get the situation under control. Friday she'll get another ERCP where her gastro will see if he can clear a path in her bile duct system to drain the liver of toxins that are building up there. If he is successful then at least we have a chance to get her back on treatment.

Sigh... emotions are running high right now. I waver between a firm resolve to be hopeful and the realization that Sarah's life is in serious jeopardy. I'm returning from a trip and the people sitting next to me on the plane probably think I'm crazy (not that I care right now) because I periodically have tears in my eyes as I think about this. Hard to think about anything else...

9 March - Liver Tumors Are Back

Sarah took a turn for the over the past few weeks - instead of the "not feeling good" feeling getting better, it got worse. She's spending most of the day just laying on the couch and trying not to do much. Fatigue and lack of appetite are her primary symptoms but she just got updated test results and liver function tests are all worse plus her tumor markers have risen to a new high of just under 300 for CA27-29. And this morning her doc called with the abdominal ultrasound results and there are definitely tumors back in her liver. She's got an appointment with the gastroenterologist to see if there's some way he can drain her liver so her numbers improve. Otherwise she will not be able to take any chemo or other systemic drugs to control tumor growth.
We're in a pretty tight spot now all of a sudden. Basically her liver is gradually failing and we can't treat her unless the situation in her liver can be controlled somehow. We're going to be having some very important conversations with her doctors over the next two weeks.