14 Dec - CAT Results

Sarah got her CAT scan and tumor marker results back today. There were no big surprises, but unfortunately they did confirm that she'll most likely need to go back on chemotherapy after the pituitary surgery in January. The lymph nodes at the left side of her neck as well as some abdominal ones are definitely enlarged with tumors and there seems to be some suspicious areas in her actual Pancreas which need to be further evaluated. Her CEA and CA27.29 markers are up to 50 and 177 respectively -- significantly up from the last reading, which is kind of what we expected given that she can feel the nodes on her neck getting slowly larger.
So the plan is to consult a breast cancer specialist at University of Chicago (recommended by her onc), get the pituitary surgery and then start back on systemic treatment right away. Somewhere in there she'll also get a pancreatic duct ultrasound and biopsy to get more information about what is going on there.
Sarah still feels pretty good overall and is back to eating what she wants, but the anxiety over the surgery and what's next after that is starting to loom for both of us. Is the pituitary mass a met or a benign growth? Is there a met in her pancreas? Can chemo shrink her lymph nodes back down? We're staring at a lot of question marks as we think about the coming new year... and the answers may only cause even more worry. At times like this we're especially thankful for all the well wishes, prayers and help from friends and family - thank you and keep the prayers coming! Strength, peace, hope.

5 Dec - Plans Firming Up

We saw Sarah's neurosurgeon as well as her oncologist this week and both agree that it's time to do the surgery to remove the pituitary mass. So, we're working on scheduling the brain surgery for Sarah. It looks like it will likely be in early January since that is when an OR will be available and two doctors' schedules overlap (an ENT and a neurosurgeon do this surgery together since an endoscope is used to access the pituitary via the nasal cavity). After this, we'll know through biopsy what the mass really is, but we'll also have to see what pituitary function remains (or is restored).
Sarah is still feeling quite a bit better now that her body chemistry is closer to normal with the help of her new daily endo tablets. She's eating food she likes and also more energetic overall.

29 Nov - Sarah Back Home

Sarah was able to come home from the hospital last Friday. With the help of several pills, her appetite is now back to normal and she's feeling much better. Now we just need to work on the longer term plan - and we've got some doc appts this coming week that will help with that.

Thank you so much to everyone that helped us while Sarah was in the hospital! She's so relieved to be back home now, but it was also a comfort to know that the boys were well taken care of while she was away from home.

25 Nov - Sarah's on Soft Food Diet

OK, finally made it back from Germany yesterday after being stuck in Hamburg for a full day due to our plane having a mechanical issue! I went over to see Sarah yesterday evening and she's doing much better - on soft food diet and doing well, and also being weaned off TPN. The last thing she needs to do before "making parole" from the hospital is for the endo doc to get her switched onto the pill form of Cortisol and Thyroid-related supplement meds. Looks certain now that her pituitary function is impaired and she needs meds to correct her levels of cortisol and chemicals produced by the thyroid. The brain MRI showed that her pituitary mass (same one that's been there for over two years) is now larger and pushing on the remaining pituitary and also there are two smaller new masses. We're told that having multiple adenomas very unusual and it would support the theory that these are actually breast cancer mets not adenomas, but they have not acted like mets with the slow growth and periodic shrinking... so the docs are still unable to diagnose them. Sarah and I are both assuming that it's time to consider moving ahead with the surgery to remove these masses. Still need to discuss with the surgeon and her onc as well. Probably Sarah will have to go on a whole host of supplement drugs to replace lost pituitary function.
Still a lot of unknowns, but in the near term Sarah is relieved to be able to eat again and is looking forward to coming back home in a few days!

23 Nov - Update

Sarah's feeling a bit better today. Either the Cortisol booster shots or the Reglan (I think more likely the cortisol) has improved her tolerance for food and she's moved up from clear liquid diet to regular liquid diet. Still on TPN, though. Did more tests for the Thyroid so the endo doc knows exactly how to get Sarah's numbers back where they need to be. On the cause side, it seems there are several "spots" at her pituitary but there's not a consensus on whether they are bc mets and whether they are operable. Sarah plans to consult with her primary onc and the brain surgeon she's been seeing to determine what the right course of action is. We're hoping either that it is operable or that she'll be fine without an operation. If she will not be fine then radio-surgery or radiation could be the way forward. Lots of unknowns at this point, but now that the docs have a better idea of what's wrong and she is getting the endocronology treatments she is finally starting to feel better.

21 Nov - Update

Sarah's now on the "TPN" IV nutrients. She's also getting Cortisol replacement shots and that line if investigation continues. She got a brain MRI to look at her pituitary but we don't have the results yet, and she is should be seeing an endocrinologist about adrenal gland issues by tomorrow. Now the two main things are seeing if she feels better with the Cortisol shots and exploring the symptoms and root cause of low cortisol. She seems to be feeling less nausea and continues to try to eat the liquid diet she's getting.

20 Nov - Sarah Hospital Update

Sarah says she felt a little bit less nausea on Friday but is still not really able to eat. She keeps trying with the liquid diet - hopefully she'll recover her appetite gradually like she did a few weeks ago. Although the doctors still do not know what the cause is, her onc noticed that one number was off: low Cortisol, which is a natural steroid produced by the body (controlled by pituitary). Can cause nausea if not present. So, Sarah will get a brain MRI on Sat morning to see if this has anything to do with the pituitary adenoma she has. No orders for a needle biopsy yet. Sarah is not (yet?) on "TPN" which is the IV nutrients - just saline with dextrose and attempts to eat.

19 Nov - Update

Well, not much new to report today. I talked to Sarah this morning and her brother Thomas as well as Rev. M.E. Eccles from our church visited her today. She's able to talk and visit with people but she's definitely got nausea and a strong "not well" feeling and is stuck in the hospital until we can figure out why she can't eat. The docs don't think this is straightforward pancreatitis because her Lipase numbers are not elevated but the CT does show swelling of the pancreas. There's talk of a biopsy, but bc mets to the pancreas are very rare. We're going to have to see what further tests reveal before we know what the next steps are or how this can be treated. In the mean time she's not able to eat even the clear liquid diet that she's supposed to be on...

18 Nov - Pancreatitis Again?!

Well, Sarah was just admitted to the hospital again for the same symptoms she had before - unable to eat anything due to nausea + feeling of fatigue. The strange thing is that her Lipase numbers are not elevated this time. Sarah is wondering if this was triggered by the Faslodex shot she just got but the docs don't think that should have anything to do with her pancreas. We are hoping that with more tests we can find the root cause of the issue - Sarah's really ready to feel "ok" again and frustrated that this keeps coming back. In the near term it looks like she'll likely need to be fed with intravenous nutrients like last time, but that hasn't been confirmed yet - we'll know later today, I think.
To compound the problem, I'm out of town on a trip with Sam to visit my grandmother in Germany! Sarah and I have been texting and talking over the phone quite a bit throughout the day. Thank you to Wendy for taking Sarah in to the doc and Elizabeth and Thomas for coming up from New Orleans to help for a while! I know Sarah doesn't want me to have to come back early from this trip because my grandmother isn't doing to well either, but unless this is a similar pancreatitis recovery to the one she did two weeks ago I plan to cut the trip short and get back as quickly as possible. More to follow over the next few days...

15 Nov - Sort Of Better

Sarah's doing pretty well, but there is still something lingering that hasn't quite settled out. Sarah has trouble describing it -- she says it's not nausea, just a general feeling of "not well." She's up and about, though. Tomorrow, she'll see be asking her onc about it when she goes in for the next Faslodex and Zometa treatment.
We're not really sure what to make if this "not wellness." Sarah's frustrated with it because she just wants to feel ok again after this long period of issues and we don't really know how to attack/treat this because we don't know what it is.
We celebrated Ben's 9th birthday this week and he had a great day. Was just a family celebration day with a friends party to follow in around 2 weeks. Probably a laser tag party. Among other things, he got several webkins and a wii game - two things that he really loves. :) He also played his first basketball game of the fall season and was jazzed about that.
Sam is loving kindergarten and also his swimming class. He even got me to take him to the pool this weekend just for fun and we stayed for 2 hours!

10 Nov - Update on Sarah

Sarah's feeling better now and able to eat most foods. Her energy is definitely up, as well, although not fully up to par yet. My parents went back to San Antonio so we're on our own again. It was a huge help having them here, especially while Sarah was in the hospital and also during last week as she recovered.

5 Nov Update

Sarah's starting to feel better now. The nausea seems to be clearing up and she's getting some energy back as well. Still not too adventurous with food yet, but making progress.

We've had quite a week for health issues! In addition to Sarah's recovery, Ben and Sam are both recovering from strep and Ben got some kind of cold with fever on top of that! Doesn't look like H1N1 but it kept him out of school for three days with a fever. He didn't seem to mind too much since his symptoms were mild and he got to sit in his room all day watching movies on his portable DVD player! The isolation strategy seems to have payed off -- his fever broke this morning and no one else in the family seems to be coming down with the same thing. Man! Can hardly remember what it is like to have everyone in the family free of sniffly noses and coughs. On the flip side, Ben is enjoying basketball and he is close to accomplishing a special qualification in Indian Guides called "Hay-lush-ka." Sam likes his swimming classes and enjoyed soccer which is now over. He has really caught on to reading, too - now he's checking books out from the library and actually reading them. :)

2 Nov - Sarah's Home

Sarah's back home - just in time to watch the Saints win another game. :) I think she's really looking forward to sleeping in her own bed again - and not being woken up for a blood pressure reading! She's still a bit weak from the whole ordeal but we hope after a few meals she'll build up some strength. The follow-up doctor appts this week will hopefully confirm that she continues towards a full recovery. She's starting it slow with getting back to a full regular diet. Soup tonight, which seems to have worked ok.

31 Oct - Fall Pics

Sarah won a Trader Joe's contest to guess the weight of a giant pumpkin, so we now have a 160 lbs pumpkin in our front yard! Sam's much smaller one from his pumpkin patch visit is on top for size comparison! It is really amazing. The other pic is just a general Fall pic. The colors are really popping out this year and Fall is looking great here.

31 Oct - Happy Halloween!

Sam ended up being Megatron, a Transformer, and Ben was a vampire. Sam loved his costume and Ben loved how his looked, but ended up not liking the feeling of having face paint on and said that the fake blood felt weird. Anyway, the trick-or-treating went great and fun was had by all! Lots of candy... I had to sample a few (just to make sure they were ok to eat). :)
Sarah's doing better. At 3pm today when I left the hosp to come back for trick-or-treating she'd eaten low-in-fiber solid food and tolerated it well. Bilrubin was also down from 7.3 to 3.8 which is a great drop, more even than we expected. The boys and I will be going to see her tomorrow morning.

30 Oct - Another Update

Sarah felt better this afternoon and seemed to be bouncing back from the ERCP very well. She even took a stab at a liquid diet of broth, jello and fruit slushy. Her energy level was also pretty good. Now we're waiting to see what her bilirubin number will be tomorrow. Surprisingly, little to no nausea today despite the anesthesia which has been tough on her stomach in the past.

30 Oct - ERCP Went Fine

Sarah just came out of her ERCP and it went smoothly. The doc placed a new temporary stent in her lower bile duct where pancreas swelling was probably restricting some flow. We're hoping to see her bilirubin numbers improve significantly by tomorrow. Expecting her to be in the hosp through the weekend until she's eating again.

29 Oct Update

Well, Sarah's nausea came back and persisted... so the plan is now to do another ERCP so the doc can go into the bile duct with a camera and verify no strictures - also most likely to place a stent again. It's a bit of a mystery what is going on at this point. All numbers are heading back down towards the normal range (ALT, AST, Lipase) except Bilirubin which continues to climb. Sarah's skin and eyes have a noticeable yellow tint to them at this point. And then there's the nausea which was the problem to begin with -- she needs relief from the nausea so she can return to eating a healthy diet before she can leave the hospital.

So, ERCP and stent and hopefully enough add'l info to understand what's causing the problem. I'll post after the procedure to report how it went. Will be spending all day Friday and probably overnight at the hospital with Sarah.

28 Oct Update on Sarah

Today Sarah feels good again, just like yesterday. She says her nausea has gone and what remains is likely hunger (hard to tell). Also, she seems to have more energy and is in good spirits. After two days of being fed by her IV, we're hopeful that she can try real food again tomorrow. Her Lipase numbers continue to drop (good). Rising Billiruben (usually not good) is giving her a bit of yellow skin, but the docs say that is normal and not a cause for concern. So, after we get the results of a special MRI being done on her bile duct and pancreas this afternoon, we hope that she'll be on the path to recovery. Thank you to all who have called, emailed, sent flowers and helped with the kids this week!

26 Oct - Update on Sarah

Quick update on Sarah. She's hangin' in there, although not really feeling better yet. The docs say the best way to treat the pancreatitis is to let no food at all enter the stomach for a few days, so that's what we're doing. She just started getting fed via IV tonight and we're hoping she starts to feel better tomorrow. Sarah's passing her hospital days with books, magazines, books on tape, , tv visits from friends and hubby, and also her new iPhone. :) It's really a waiting game at this point. She's still feeling some nausea, but without eating food it seems manageable, even though it definitely causes constant discomfort.

Figured It Out

The doctors figured out what is causing Sarah's nausea: she has an enflamed Pancreas. The CT didn't give any reason to believe that it is cancer-related. Probably just something related to the bile duct stent.
The plan is stop all food intake (but she gets nutrients via IV) until the pancreas settles down and then she'll do another ERCP procedure so they can make sure her pancreatic duct is cleared to allow flow. That'll probably be around Wednesday, so Sarah's got several more days in the hospital than we thought. But, we're both very relieved that we have a diagnosis and that it is both unrelated to cancer and that it is solveable.

Sarah In Hospital

Sarah's prolonged nausea caught up with her this Friday. Probably due to not eating and drinking enough, she felt really weak and I took her in to see the doc. Her doc had us admit her to the hospital right away to get some fluids and sugars into her system and she has perked up today. But, we still need to figure out what is causing the nausea so she can eat again, so we'll be here at least for a few days and there is likely another bile duct stent in her near future. Had a bowel xray yesterday (neg) and liver CT will happen this afternoon since Sarah's liver function numbers are back up. Sarah is holding up fine now and is mostly just frustrated that we don't know what the cause is so she can fight/treat it. No internet in her room so she'll be off email for a few days.

15 Oct - Stent Removal Went Well

Sarah had her bile duct stent removed today and everything went very smoothly. We were relieved that the duct was no longer pinched off so no new stent needed to be placed, and she didn't wake up during the procedure this time either! The assumption is that the enlarged lymph nodes outside the duct have responded to chemo and shrunk back. We were on our way back home at 1pm so it was a quick-turn process. Sarah's sleeping heavily this evening as she recovers from the general anesthesia, but she should be feeling good tomorrow.
Also, we learned from her oncologist that her hormone levels support a switch from chemo to hormonal treatment, so instead of getting a final Taxotere treatment next Monday, she'll switch to Faslodex along with the usual Herceptin. This will present a welcome break from the taxing side-effects of prolonged chemotherapy and we're hoping her cancer respond with declining tumor markers - that's what we'll be watching for in the 2 months to come.

10 Oct - Update

The latest set of tumor markers were just a little under the previous set of numbers, so although the CAT scan showed no significant activity anywhere, we know there's some systemic tumor activity and Sarah needs to continue with her treatment. Since it is not recommended to have more than six rounds of the heavy 3-week doses of Taxotere, Sarah will get one more after next week and then switch to either Xeloda or something else. One option may be a new approach of alternating chemo and hormonal treatment. We're going to discuss it with her onc in two weeks after he attends a breast cancer conference where data supporting the approach will be presented.
But, before Sarah's next and last round of Taxotere, she's scheduled to finally get that stent removed from her bile duct next Thursday. We're not sure if another will be placed, or if the duct will no longer be pinched off by the lymph node tumor that was causing the problem before, in which case of course she won't need another one placed. We're hoping for the latter, and also hoping that she doesn't wake up again during the procedure! Sarah dreads that more than anything else about getting the stent procedure. Other than that, it's a day-surgery type setup where you can go home later the same afternoon.

25 Sept - Treatment Week

Quick update - Sarah recovered from her cold just in time to get chemo this past Thursday as scheduled. Due to an allergic reaction to the Carboplatin she's getting Taxotere alone now. She feeling a little queasy but not too bad so far. Just the fatigue that comes along with chemo so far. She also got tumor markers pulled on Thursday and we'll get the results next week. Other than that, we're just making it through one treatment at a time. Laying low this weekend, of course.

21 Sept - Delaying Stent Procedure

Ok, well Sarah didn't get her bile duct stent procedure (called "ERCP") done today. She got a cold that's had her running a mild fever for a few days - and it's making its way around the family. Started with Sam, went to Sarah and now I'm getting it.
Anyway, the policy is not to do the ERCP if you're sick and have any level of fever - that's because they can't tell if you develop an infection and fever from anything related to the procedure if you already have one.
So, we're on hold and will have to reschedule the ERCP for after Sarah's treatment this Thursday - that bumps it out a few weeks. Not a huge deal but the stent is called temporary for a reason and we're at the far end of the window with it so we don't want to delay any more than necessary.

19 Sept - Stent Replacement

An update on Sarah - she got the ultrasound of her port and blood clot. The determination was that although it was still there, it wasn't getting worse right now and we can defer the port removal surgery for now. That's a big relief for Sarah because the surgery is fairly painful to recover from since they cut through muscle. She'll stay on Coumadin for now.
Sarah also got a CT scan which was mostly good. It showed no indication of the liver and lymph node tumors visible on the last PET scan. But we're not sure if that's a limitation of CT scanning or whether there really isn't anything. The scan did show something in her lungs but we're not sure yet whether that is mets or something else so we're trying not to freak out until we can talk to the doc about it. Our plan is to push for a PET scan to investigate these questions.
The next thing on the agenda is Sarah's bile duct stent replacement (or just removal). That's happening this coming Monday. It is supposed to be a day surgery so we plan to go in in the morning and return home by the afternoon. If the CT is to be believed, she may not need a new stent placed for now. She then has treatment again next Thursday.

31 Aug - First Day Of School

Ben and Sam love school. Ben got a fresh and short haircut which he likes and Sam is now really liking Kindergarden, although he wasn't at all sure about that on his first day as you can see here. We're still not quite sure what was bothering him but after a few days he was fully in the swing of things. :)

25 Aug - Vacation to St. Joseph

We all had a great time in St. Joseph, which is on the eastern coast of Lake Michigan. It took us just around 2 hrs to get there by car and we did quite a bit! Here you can see pics of a windy day that made some great waves, a nice pic of Sarah and the boys on a cooler day, a fun peach-picking day, burying the kids in the sand (with friends Tyler and Reece) and finally one of the great sunsets we saw.

9 Sept - Tests

Sarah has made it through another treatment. She had chemo last Thursday and is now mostly recovered. She had an ultrasound of her medi-port to see if the blood clot there has reduced in size - we'll find out tomorrow whether the clot is clearing or whether she needs to have the port pulled out and replaced (on the other side). Also next week she will get a PET scan which will help decide whether she'll continue on Taxotere or whether we need to look at other options. As if this wasn't all complicated enough, Sarah is scheduled to have her bile duct stent replaced in less than two weeks! When you pile on the start of school and some upcoming travel of mine, it's making for a very busy time ahead of us in Oct and Nov.

14 Aug - Another Round

Sarah just got another round of Carboplatin and Taxotere chemo. This was a scary one because she stared getting an allergic reaction to the Carboplatin. But luckily she got a nurse as soon as she noticed being itchy all over and getting red spots. They loaded her up with Benadryl and then dripped the carbo slower and everything was fine again.
Right now, Sarah's feeling ok - a little bit queasy - and is resting a lot.

9 Aug - The 3-Day Walk For Breast Cancer

We spent most of the weekend cheering on Nicole, who was walking in the Breast Cancer 3-Day. Here are some pics. Thank you, Nicole! We had a great time hanging out with Brian, Maddie and Cloe as well.

5 August Update

Quick update - Sarah's feeling much better, although her neck is still a little swollen from the blood clot. It hasn't done anything and she's taking the Coumadin. We're looking forward to the arrival of our friends Nicole and Brian + kids tomorrow.
Nicole will be marching in the 3-Day Walk for Breast Cancer here in Chicago this weekend. (Her fund-raising site is at: http://www.the3day.org/goto/Nicole.Smith)

30 July - Update on Chemo and Bloodclot

Well, Sarah's made it through another round of Taxotere-Carboplatin chemo. She was pretty fatigued for the past week after treatment and had some mild nausea. Today her week-1 blood test showed zero white blood cells again, which was not unexpected. So, I'll be giving her two shots at home to kick-start her immune system and she's going to lay low and stay away from public places.
We got a curveball today when Sarah learned she has a bloodclot at the point where her mediport enters the vein in her chest. We were both initially pretty freaked out, but the docs don't seem to think that it is an immediate risk for her. The plan is for her to take Coumadin, a blood thinner, for 6 weeks and then get another ultrasound to determine if the clot is gone. The Coumadin should dissolve the clot over time but we're keeping an eye out for any unusual feeling or swelling on the side of her neck. If it doesn't take care of the problem, then Sarah will have to have her port removed and have another one put in on the other side of her chest. Ouch.

19 July - Sarah's Hair Is Gone

Here's a before and after shot of Sarah. Her hair started coming out in big clumps yesterday after our blueberry picking excursion and was getting pretty patchy by the end of today, so she had me cut it short with clippers. This is the fourth time that we've done this...
Sarah's taking it in stride, but you can't escape the fact that losing your hair is a very visible and constant reminder that you are in cancer treatment. Having said that, this is week 3 in the cycle and she's been feeling pretty good this week. Also, we learned last Thursday that her liver function is solidly back in the normal range. Doc said, "so now we can hit you with the full dose of Taxotere." Sarah's first thought was, "what? that wasn't a full dose last time!?" She was feeling crappy for almost two weeks straight after the last treatment. Well, the next treatment is on the coming Thursday... so we'll just have to wait and see how it affects her. We won't really know if the chemo is cleaning up the lymph and liver tumors until the PET scan next month.

18 July - Blueberry Picking

Went to a blueberry farm this weekend - we all enjoyed it and ended up picking 12 pounds of blueberries! The bushes were much bigger than I remembered from when I was a kid, and there were big juicy berries as far as the eye could see. Have to admit, I ate quite a few while we were picking. :)

15 July Update - Sarah Feeling Better

Sarah's immune system is back up and operating and she's feeling much better. Just learned today that her liver numbers are back in the normal range! Her hair is starting to come out a little, but there's no way to tell whether it's just thinning or whether it will all come out. We'll just have to wait and see. It's week three and she gets to enjoy a few days of feeling good and strong before the next round on coming Thursday. We are planning a full weekend - blueberry picking, a bar-b-que and maybe a family bike ride...

10 July Update

Ben finished his summer classes - he took a science challenge class and a mission impossible math class. He loved both and here he is showing us his final science experiment presentation on the last day of classes. He determined that cotton balls can be shot through a tube when a fan is blown on one end and land in a fairly consistent spot. :)
Sarah's had a rough go after this last chemo round. Just as she was recovering from the fatigue and mild nausea, her weekly blood test showed that her white blood cells were wiped out to zero (not the first time we've been through this). So, she's getting shots to boost her whites production but as we wait for her counts to bounce back she's fighting off a moderate fever which makes her feel pretty crappy. We should be ok but we're watching her temp closely to make sure her weakened immune system doesn't become overwhelmed and require action. The doc gave us a few shots for the road which I'm giving her every day for the next few days (goes in the arm). Having zero white blood cells is pretty dicey so she's pretty much staying home and avoiding as much contact with others as she can - getting any kind of serious virus or infection right now could be a problem and we're keeping a close eye on it.

2 July - More Chemo for Sarah

Sarah has recovered very well from the gallbladder removal and she's now able to eat just about anything. She even threw a football with me for a while during Sam's t-ball practice yesterday! But today it's back to chemo again and a few rough days ahead.
Since Sarah's liver function test values are just about normal again, her doc has kept the Carboplatin dose at the same level but added Taxotere on top of that. She spent all afternoon today at the clinic getting treatment - takes a long time to administer all those drugs (chemo, herceptin, anti-nausea and sometimes the bone strengthener Zometa) since they can't go too fast. Each one has a target rate.
Sarah feels ok but tired right now. The steroid Decadron kept her up last night so the chemo plus low sleep from last night made her crash on the couch at 8:30 tonight. We're not sure if she'll lose her hair with the Taxotere. It doesn't always happen with that drug, but these are some fairly high doses so we figure there's a good chance it'll go this time. Sarah doesn't care as long as it fights the cancer, but it does annoy her not to know whether it's going to happen or not.
Well, for now we are just getting her treatments in and waiting for the next PET scan in Aug to see if this chemo is shrinking the new tumors around her liver and at the supraclavicular. She'll have two more treatments before we find out.
Ben had his last baseball game today. He really seems to like the game - we'll definitely get him back on a team next year. Sam is doing fine and enjoying his summer camp. Kindergarten will be a big first step for him at the end of the summer!

20 June - Stent Went Fine

Still in the hospital with Sarah but the docs say she can go home so we're going through the release process. The stent went in fine yesterday although Sarah says the procedure was very uncomfortable (she woke up in the middle of it twice). It's a temporary stent which should last around 3-6 months, so it will be either replaced or potentially removed before long (if chemo shrinks the lymph node pressing on the duct then then stent may not be needed anymore).
After two back-to-back anesthesias, Sarah has bounced back remarkably well and is eager to get back home. She's was also happy to hear that her liver numbers have already significantly improved and are almost back in normal range! So, the gall bladder removal and stent placement were well worth it and definitely needed.

18 June - Gall Bladder Removal Went OK

Posting from the hospital room - Sarah's gall bladder removal went fine and she's recovering well. Already off all pain and nausea meds. The doc recommended also having a stent placed in her bile duct so a GastroEnterologist will be doing that on Friday while she's still in the hospital. That doesn't involve any incisions -- they go on through the mouth/throat with a very thin endoscope.
Sarah's in good spirits but tired from the anesthesia recovery. She's hopeful that she can put the constant worrying about gall bladder attacks behind her and that's a real relief! She's lost over 10 lbs since this all started because she was avoiding so many foods for fear of an attack.

14 June - Day 4 of 2nd Chemo Round

Sarah got her 2nd round of Carboplatin chemo last Thursday and it seems to be going like last time. She is doing relatively ok overall, but definitely has some fatigue and queasiness. No sign of hair loss, so the jury's still out on that. She should start feeling better over the next day or two. But, this is going to be a different "week 2" than the last round of chemo: her surgeon and oncologist agree that her gall bladder should be removed, so that is scheduled for this coming Thursday (laproscopic procedure). There's a good chance that her liver function tests are staying high-out-of-range due to the gall bladder issue and she continues to have problems with it. She is being very conservative with her eating in order to hopefully prevent another gall bladder attack - but she feels like she's walking on egg shells and it could happen again regardless of being cautious. It will be a relief for her to have the gall bladder procedure - we hope the attacks will stop and her liver numbers we come down so we can open up more chemo treatment options (although the carboplatin may be working well - we won't know until we have some test results on that front).

Ben At Baseball Game

Ben seems to really enjoy baseball. We were at one of his games today and took a few action pics. :) One as catcher (every kid seems to love wearing the special gear) and one taking practice swings while On Deck.

6 June - The Problem With Gall Bladders

The problem with gall bladders is similar to all those other things we take for granted like electricity or water -- you never think of them when all is running fine, but when something goes wrong... you really notice it and it becomes a big problem. Sarah has been getting gall bladder attacks periodically which are very painful. We even ended up taking her to the emergency room late at night last week because the pain was so severe (she said childbirth was preferable - and she did childbirth with no drugs!). Turns out the attack ended about 1 hr after we go there and she was fine afterwards (thank you to our neighbor Pat for staying at the house with the kids!), but we don't want to let things go on like this... so she'll be meeting up with a surgeon next week to discuss removing her gall bladder. We're not sure if this is related to her breast cancer or not. All we know is that an ultrasound shows "sludge" but no stones in her gall bladder. Typically, the best medical solution to a problem like this is removal and a modified diet afterwards.
Other than that, Sarah is doing fairly well. Her hair did not fall out this week - turns out that Carboplatin doesn't make everyone's hair fall out and when it does, the time can vary quite a bit. So, next week will be eventful and mostly not-fun: talk to surgeon, go out for a birthday dinner with hubby (for salad?) on day b4 birthday, get chemo on birthday (or get surgery instead and delay chemo 10dys). Well, you do what you have to, right? We're keeping our fingers crossed for no more gall bladder attacks.

27 May - Round One Tapering Off

Sarah feels much better today and has been up and about with a lot more energy and no nausea. Rainy here in Chicago so we're keeping indoors except for the kid's soccers and baseball. Had a baseball game out in the rain yesterday evening which was super muddy! The coaches agreed to end it after the 3rd inning.

25 May - Memorial Day

I tried to get a good Memorial Day Parade picture of the boys and me with the bribe, "let's do one real picture and then a silly one." Well, the kids still could only muster some very forced and constipated looking smiles for the "real" one... so here's the "silly" picture instead! Sam really went all-out with the 'ole classic Stretch Your Mouth And Stick Your Tongue Out - that's gotta hurt, right?
Sarah joined us after the parade to hang out at some Memorial Day cookouts and I think she had a great time (as did we all). Overall, I think she felt pretty good but chemo-fatigue caught up with her at around 7pm and she crashed hard on the couch.

24 May - Update

Ok, Sarah's definitely feeling the side effects now. Took a few days to kick in, but she's started to feel more fatigued and some loss of appetite and nausea. She has been sleeping-in and spending quite a bit of time on the couch cat-napping throughout the day. I took the kids to church today and I'll probably take the kids to the Memorial Day parade while Sarah gets some add'l rest in the morning. Only problem is that chemo fatigue doesn't really get better after sleep... she'll just have to wait it out. Sarah might get a red blood cell booster shot this coming week when she goes back to the doc for a check-up - that should help with the fatigue.

22 May - Chemo Update

Quick update: Sarah got her first dose of Carboplatin yesterday. So far, the side effects have been limited - knock on wood! She felt ok this morning and is up and about - just a bit more tired than usual. She's taking a good anti-nausea drug called Emend and it seems to be working.
Thank you to everyone for the many well-wishes!

19 May - Battle Lines Are Drawn Again: Sarah Back On Chemo

First a quick update on family stuff: Sarah and I got to attend her 20 year high school reunion in New Orleans while my parents come up to Chicago to stay with the boys. We had a great time at the very well attended reunion and enjoyed staying with Thomas and Kerry. Ben also started baseball and just had his first game this week - he really likes it and asks me to practice all the time. Sam's doing great at soccer as well - he's really going for the goal.

Unfortunately, we also have an update on Sarah's fight with cancer (just days after we celebrated her 3rd year of survival since diagnosis). They say wars are fought one battle at a time and we're starting a new battle: a PET scan now shows new tumors in and around her liver (two are around 2cm) and a smaller met in her lymph node near her neck (supraclavicular area). The tumors around her liver are probably the cause of her gall bladder attacks since it is likely that they are pressing on the outside of her bile duct, pinching it off periodically. That's also driving her liver enzyme measurements up and limits the choices of chemotherapy treatments for now. The fix for that is either using available chemo to shrink the tumors near the duct or putting a stint in the bile duct to force it open.
For now, Sarah will immediately begin a strong dose of the chemo drug Carboplatin together with the usual Herceptin (repeated every three weeks) and she'll get also get another ultrasound tomorrow to look more closely at the bile duct - that will determine whether a stint is needed.

It's been eight months since Sarah was on chemo - a welcome break that we were hoping would run much longer... But, it's time to fight again and Sarah knows what needs to be done. I think after the initial shock of the results she's ready to get on with it and "do something" about the new tumors. So, back to no-hair, back to nausea, back to roller-coaster blood counts. Anxiety about the future is front and center again, but the hope that balances it out is that another break will follow this new "battle" and we can shock the cancer back in to stability. For now, we'll take it one step at a time.

18 April - Neurosurgeon Meeting Went Ok

Sarah had a brain MRI to check on her pituitary and we went to discuss the results with our Neurosurgeon this past week. Although we were worried that he would push for surgery to remove the growth there, it was a relief to hear that he wanted to wait and get another MRI in six months. The size did not increase as much as we initially thought because the radiologist included the pituitary itself in the measurement this time, and the doctor said the growth was not significantly "enhanced" in the scan. Based on this and that we've gone a year with relatively little change, he feels it is very unlikely to be a breast cancer met. So, even though we aren't sure what it is, it's not pushing on anything and Sarah has no symptoms -- we're comfortable (and relieved) to go with a wait-n-see approach for now.
Easter at our house was nice and fairly low-key. Everyone had fun and the Easter bunny was generous to all. I sang in the church choir for the first time and I'll continue doing that from now on as time permits.

6 April - Catching Up

I haven't posted to our blog for a while so it's time to catch up! Since the last post, we've been skiing to Devil's Head ski resort where everyone had a great time, we celebrated Sam's fifth birthday, and Sarah and I flew to New York for a little 4 day get-away while the boys stayed with my parents in Chicago. So, quite an exciting two months for all!
Sarah is doing well, although some new questions have recently emerged: a brain scan showed some growth of her pituitary tumor (only along one axis) and we are trying to figure out what we should do about that; and Sarah has been having gall bladder attacks which cause some pain after heavier meals. Based on a recent ultrasound there are no stones (or tumors) causing the issue and we're not sure it is cancer-related. Also trying to figure out what the next steps are for that. Overall, in our frame of reference that includes the life-threatening tumors in Sarah's liver last year, these two issues are concerning but not causing high anxiety at this point. For now, we will be confering with Sarah's doctors to see what the options are.

21 Feb - Sledding Again

... and after our warm weekend in New Orleans, we're back to sledding! Had a little snow dump in Chicago this weekend.

13 Feb - New Orleans Trip

We just got back from a family trip to New Orleans where we visited Sarah's brother Thomas and his wife Kerry. They took us to see six Mardi Gras parades (the more "tame" ones) and everyone had a great time! Ben and Sam caught quite a few beads, stuffed animals and other toys. In these pics you can see a staging warehouse for the floats, called a "den" - see the huge pile of bead bags? Also some pics of Ben and Sarah along the parade route.

8 Feb - Winter Campout

Ben and I went to the Indian Guides Winter camp-out this weekend. You can see a sunrise over the cabin, Ben on horseback and a group of us playing broom-ball on an ice-covered lake. We had a great time! Sam can't wait until the Fall when he'll be old enough to join the program, too.
Sarah is doing well - her blood tests continue to be very low and she's enjoying the less frequent doctor visits and more frequent gym visits. :)

King For A Day

Uncle Thomas and Aunt Kerry sent us a King Cake from New Orleans and by tradition, a little baby figure is baked in to the cake. The kids decided that whoever got the piece with the baby in it would be "king for a day." Well, Sam got the baby and we made him a crown today with the baby stuck to the front. :)
We also went sledding since the weather finally warmed up a bit (it was 22F, up from -10F in the past few days!). As you can see, Sam had a great time!

15 Jan

Last weekend was busy - on Saturday, Ben took part in a cello workshop that took up most of the day and he really enjoyed it. The boys and I had just enough time after that to get out to the sledding hill - played in the snow until after dark. :)
On Sunday, we all went to a local indoor water park and spent all day playing in the water. The whole family was exhausted after that!
Sarah is doing great - got another round of tumor markers this week and the numbers are staying low, and she's keeping up with her trips to the gym, as well.
This week, we'll just focus on staying warm since we've got wind-chills going way below zero degrees F in Chicago tomorrow and snow everywhere. Brrr!

Christmas

Santa was good to us this year -- lots of presents under the tree, although 7am felt pretty early on Christmas morning!  It was barely getting light out.  You can see Ben and Sam here checking out their stockings.  They both have their matching Christmas pajamas on, which they always look forward to getting each year on Christmas Eve.

Shortly after Christmas, we were also happy to get a visit from Elizabeth.  And then we just celebrated the New Year here in Chicago.  Best wishes for the New Year to all!

Advent

We had a really busy time leading up to Christmas!  Alan's parents were with us for the second half of Advent and celebrated Christmas with us, which was very nice.  Since they live in Texas, the snowy white xmas was a big treat this year! 

The first pic shows Sam in his pre-school holiday music show cracking-up at something.  After that you can see our little shepherds, dressed up for the children's Christmas pageant at our church.  Then there's a pic of us decorating the tree, with Oma helping out.  Finally a quick pic that hints at how hard it was to get the picture we ended up using for our photo xmas card!  (all you parents out there know exactly what I'm talking about!)  Getting both boys to smile at the same time & not make a face or poke each other is always a feat...

But, we got everything done and had a great Advent time. :)