Monday, September 30, 2013

Vicksburg with Amy!

My good friend Amy came to stay with us for the weekend. This was her first time leaving her 4 kids with her husband and traveling somewhere by herself for a 'get-a-way' and she chose to come help me entertain my kids and keep up on my housework.  She's a complete saint. On Saturday, we decided to explore a new part of Mississippi: The Delta. Vicksburg is the town on the southern most tip of the Delta and is straight west of Jackson near the Mississippi and Louisiana state border. We had to drive across the bridge just so we could each experience a first - being in Louisiana. Although, I'm not sure driving for one exit on the freeway really counts. 

We wondered if any ships use the Mississippi these days and while we stopped at a park to eat a late lunch we saw a tug boat pushing an extremely long load of barges. 

Also we visited Vicksburg National Military Park that basically consists of a 16 mile drive through one of the most well-marked battlefields of the Civil War. I didn't know anything about this particular spot in history but because Vicksburg is on a nice hill, the confederates held their ground quite well and the union decided to siege the city in order to take control of the Mississippi. Below is a house one regiment of the Union used as headquarters for a while. Its been maintained in its original state. 
Below is a tunnel that soldiers dug to carry supplies and troops through to avoid getting shot at from enemy fire at the crest of the hill. Obviously, the bricks were added later.

This is Chris and Gwen on the USS Cairo. It was one of the first of its kind, an ironclad gun boat built for the Union. It was also one of the first to be blown up by a naval mine.  Some camouflaged confederates lay in wait and detonated the mine as the ship passed. It sunk in 12 minutes but without any casualties.  It was difficult to explain to our children about war. How both sides had good people and mean people, but that the side that wanted America to be a place without slaves won. They kept wanting to simplify the history we were giving them into terms of Good guys verses the Bad guys. We ended up using "Blue team" verses the "Red team" the most. 

Vicksburg is also home of the largest national cemetery of over 17,000 graves of Civil War Union soldiers and sailors. 13,000 are unknown. 

We wanted to see more of the Delta and so drove home the long way passing through field and after field (mostly already harvested and plowed over). We saw lots of cotton and a few homes. Thanks to our GPS we took a wacky way along small country highways which took us right through some very poor areas. We stopped at a little town and got some dinner at a BBQ shack type place. Amy and I decided to be adventurous and ordered a rib and catfish plate with hushpuppies and okra. It wasn't too bad, everything but the ribs were completely breaded and fried.  Again, like on our drive out to Mississippi, we noticed places alongside the freeway where EVERYTHING was covered in ivy.  It clung to the very tops of trees and made them droopy and creepy looking. Telephone poles, ground, bushes, trees, fences...100% hidden behind ivy.  It was a long, interesting, educational and beautiful day. It was my first chance to explore West and South of our house and as a result I now feel a little isolated here in Starkville. We're smack dab in the middle of a 2-3 hour radius of basically rural Mississippi. 

Monday, September 16, 2013

Our first Mississippi Outing

We took advantage of the extra week we had with my mom before the last chemo treatment (thanks to Chris' cough) and explored a bit of the local scene. All my kids, Charlie especially, have been wanting to go on a hike. There isn't a whole lot of elevation change around here, but Chris had heard about a nature preserve just 15-20 min south so we went exploring.

We did two short little hikes, both out to look out points. One was through some beautiful fields and long grasses. The path was super grown over and we basically followed the yellow-wild-flower path.  The second hike was along a board walk over some marshy looking stuff right to the edge of one of the lakes. The kids enjoyed running to their hearts content. 

Even though it was relatively cool day compared to the previous weeks, it was still blazing hot. The kids were sweating like crazy. Finding some nature really helps me feel grounded and I feel like I have a better grasp on where I am. We all really enjoyed our 'hike.' The peace and quiet and room to sprawl was just what our family needed. 

Saturday, September 14, 2013

Round 2

So last weekend Chris and I headed back up to Tupelo for round 2 of Chris' chemotherapy cycles. Things we remembered to bring to the hospital this time:

-pillows galore
-extra clothes and underwear for both of us
-Sunday clothes for me
-laptops, cell phones and all the chargers 
-stuff for me to do: kindle, journals, and a sewing project 
-socks for both of us, and shoes for me to wear with the socks
-snacks and potential meals for both of us including lots of liquid options like hot chocolate, herb tea, apple cider and broth 
-decent shampoo, and essential toiletries

All things considered it went better and worse this round. Better for me, worse for Chris. He didn't have an appetite, had a gross taste in his mouth the whole time, some more nausea than last time and bad indigestion. As a result, he didn't seem interested in doing much.  His picc line was in a more awkward spot, closer to his arm pit than his elbow which bothered him a bit more. Thank goodness for take out, and sports: that crazy US Open semi final between Wawrinka and Djokovic and BYU VS Texas football game. They lifted his spirits by Saturday night.  I wondered if the nurses or patients in the other rooms would his hear, "Go, Go, Go...!!" I figured happy loud sounds on that floor are few and far between and that if anyone did hear him it would seem a nice break from the loud and annoying beeps of drip lines. BYU had a pretty awesome game. Go Cougs!

Thanks to not forgetting some important stuff at home, I was more comfortable this time. Once we got some extra nausea medicine for Chris going in and he was feeling a bit better and able to eat, I quite enjoyed my time there.... working on my sewing project (my first attempt at applique), grabbing food for Chris, and running some errands at the different stores Tupelo has to offer.

I'm so glad the technology exists and am grateful for the doctors and nurses who have sacrificed much throughout their education and training to be at the point where they are now ...helping Chris make it through this. I'm so thankful to have been born to H2B2. My parents are incredibly supportive and my mom's stay extension and her quietly assertive problem solving made my life that weekend so much easier.

Charlie's brotherly kindness

Charlie-with-Gwen lives the phrase, 'brotherly kindness.'  Sometimes I feel like he makes a better parent than I do. Quite seriously, 90% of the time he plays with Gwen, he is the picture of patience, the epitome of cooperation and the definition of service:
  • She drops her spoon and starts crying, he automatically picks it up and with a single breath produces sounds or words that make her laugh or smile. 
  • She can't reach a puzzle she wants to play with, he'll stop playing with cars to grab a stool, and use it to get the puzzle for her. 
  • She is half asleep in the bottom bunk, crying out to me because she has to go to the bathroom and from the top bunk he (half asleep) yells even louder for her - "mom! Gwen has to go potty!" and by the time I make it in there, he's saying things like, "Its ok, Gwen. Gwen, just calm down. Take a deep breath..." with his eyes still closed.
  • She's in bed about to go to sleep when she notices she doesn't have her blanket, he (also in bed) says he knows where it is "under the pillows in the corner of the cardboard castle", climbs down the ladder, runs downstairs, and gets it for her.
  • She complains about wanting her cup, bowl and plate to be the same color so they can match. He'll go over to the cupboard, dig around in the bucket until he finds the right ones...or if he can't find the right ones, he'll try to make the ones she already has seem cooler..."but those ones match mommy's."
  • She's "too tired to go potty by myself" and screams to me, "you get the stool!" "you, unzip my jammies!" "I'm too tired." I am trying to train her to do these things for herself and our deal is, I will come in to help her wipe because the toilet paper is actually too far for her to reach anyway. Despite the whines I try to stay strong, I REALLY want her to get in the habit of doing these things for herself. BUT.... across the house, Charlie hears her and comes to her rescue. He gets the stool for her, and unzips her jammies even though she's still mad and pouting that I won't help. 
  • She's eating breakfast and wants another kind of cereal in her bowl. I'm gone dropping off Alec at school and Chris is getting ready for work in the bathroom. Charlie takes her bowl to the sink, washes it out so there aren't any floaties left, pours her a new kind and some milk.  She starts crying because she didn't want any milk in her bowl, she wanted to eat the cereal dry. In a patient and kind voice Charlie figures out what she wants and somehow fixes the problem (Chris guesses he pours her some dry cereal on the table). 
  • She whines and cries because the puzzle she's decided to tackle is way too hard for her and she's trying to finish it fast so she can carry it into the other room where I've migrated. He walks by and with his sweet 'I'm talking to Gwen voice' helps her know where to put the remaining pieces without actually touching them, so she can still "do it by myself."

I could go on and on, really. He's amazing and HE'S ONLY 4 YEARS OLD, and Gwen is 3. I know this post makes Gwen seem super spoiled and whiney...and while I'd like to say that isn't true... there sure is LOTS of evidence to support the statement. However, its also true that she's not like that all the time, not even 90%, I'd say more like 45%. She's very content and sweet the other 55% of the time.  And while we're talking about numbers, I'll point out for Reality's sake that Charlie is not perfect. 10% of his interactions with Gwen aren't so patient... he'll still scream at her and take cars away from her because he thinks they're 'his' cars, or he'll insist on sitting on the stool and refuse to switch with her even though she can't reach the table in the other chairs.  Also his interactions with Alec are a COMPLETELY DIFFERENT STORY, like almost the opposite. But all this is not why I'm writing this post. I want the world to know (including his old sunbeam teacher in Canada who is apparently praying specifically for Charlie throughout our crazy life right now) that Charlie is an extraordinary boy.  We're so blessed to have him.

 One afternoon he offered to carry both my purse and Alec's backpack into the house.

I just found this picture on my phone -- looks like a self portrait at church.

Wednesday, September 11, 2013

Dress ups

These kids love to dress up. Just after the picture was taken Charlie and Gwen were talking about their fighting stances and Gwen dramatically explained to me " I was like this (jumps into the pose) so I can cut ...your arrrrrm."

She definitely as older brothers. 

10 minutes later I find their costumes shed and them all settled in their own houses cleaning up lunch and getting ready to put their babies down for naps. 

Monday, September 2, 2013

A Trip to Nashville

On Thursday last we made a day trip up to Nashville, to visit the Stem-Cell transplant center at Vanderbilt's Medical Center.  It is right around a 5-hour drive from Starkville.  Our appointment was scheduled for 1:30, and I was teaching class from 8-9:15 am, so we didn't have a lot of leeway.  They had a very nice person who talked and emailed with us a few times to make sure everything was ready for our visit.  He said that we could show up late to the appointment if we needed, and that they would still see us and that everything would be fine.

I taught class until 9am and then had the TA show a movie for a few minutes and then answer homework questions if anyone wanted.  Before class we dropped Alec off at school, and Brittney went in for a few minutes to talk to the front desk to make sure that everything was ready for that afternoon.  The plan was to have Alec ride the bus home with some of the Branch President's daughters, and both we and Alec were a little nervous that everything go right.  Then Brittney dropped me off at class, then dropped Gwen and Charlie off at the Branch President's (his wife has been so kind to watch our kids a few times when we need it), then came and picked me up at 9 and off we went.

The drive up was pretty pleasant.  The last maybe 2 hours is on an interstate highway, but up until then it is small state highways and the like, alternating between 2 and 4 lanes.  One great thing about living here is that there is pretty much no traffic anywhere ever.  We made it to the clinic at about 1:40, having skipped lunch, and proceeded to check in.

There was a big reception room with many check-in people working.  When it came your turn, they would call you up and go over all your information, insurance etc.  Then we went up to the Stem-cell clinic, where they called us in and took vital signs.  The clinic was on the second floor of the cancer center, and the waiting room was walled off, with signs everywhere to not go in if you were sick or coughing.  I still had a bit of a cough from a cold I caught over last weekend, which really seemed to hammer me.  By Thursday I was feeling a lot better, but still had the cough.  I wore a mask for the rest of the visit, so that I wouldn't get anyone sick.

First we saw a nurse practitioner who talked about our history with us and went over the general idea of a stem cell transplant, including timing of the different steps and logistics of staying in Nashville, etc.  We learned that there will most likely be a couple of trips to Nashville before the transplant itself; one for the "Evaluation:" a two-day series of tests (heart, lung, etc) to make sure that I can withstand the transplant.  Then we have to come up for the stem cell extraction, which sounds like a 5 or 6 day process, and then we come back up for the actual transplant.

We found out that transplant patients stay in an apartment complex a few blocks away, where they can be in a one or two bedroom apartment, which just depends on what is available when we need one.  Everyday I will be coming over for whatever needs to happen that day.  First the extraction, then the chemo, then the reinsertion of the stem cells, and then a daily check up for at least two weeks to make sure everything is going well.  It sounds like at some point almost everyone needs to be admitted to the hospital for some amount of time, due to a fever or not being able to eat, or something.

We found out that it is mandatory that someone be with me in the apartment at all times.  We also found out that there are no rules concerning visitors in the apartment, only whatever limitations we want to put on it.  The nurse practitioner was very nice and we felt like we had more information, and more questions.

Then we met with Dr. Kassim, the hematologist that will be our main transplant doctor.  He is a very friendly guy, originally from Ghana.  We found out from him that the transplant really can't get started until the cancer is in remission, which will be shown by a clean PET scan.  He also suggested that maybe we only need two cycles of the ICE chemo treatment, since that often suffices.  He was very great at answering the questions we could think of at the time, and seemed like he will be a great person to have on our team throughout this process.

Then we had to have some blood drawn (not my favorite) and set up follow-up appointments.  Since we don't know exactly yet when we will be ready for the PET scan, most of the appointments will probably have to be moved, but they are placeholders.

By this time it was almost 5pm.  I had discovered a few days earlier that Ole Miss was playing at Vanderbilt in the season opener Thursday night at about 8.  As we exited the parking structure we quickly encountered our first major traffic of the trip.  So much for exploring Nashville.  We made our way back to the freeway, which went better than trying to go in the other direction, since everyone was headed to the game.  We made it a little ways on the freeway until things calmed down, then stopped for a quick bite and to fill up with gas.  We also went through a car wash.  We park our cars under some trees that seem to drip sticky stuff all over our cars.  We will need to be doing car washes more frequently.

We drove back through the dusk while we discussed the visit and what questions we had left.  I have to say, we were both stunned by the beauty of Tennessee on the return trip.  Lush trees, real rolling hills and lots of greenery.  Just gorgeous.  A lot like Mississippi, but just more hilly.  We made it back home around 10pm and happily met with Brittney's mom, who had flown in around 3:30pm and collected our kids.  Alec did great on the bus and it was wonderful to all be home together, safe and sound.

Like Brittney said in her last post, the next morning we decided that I was too sick to go through with the Chemo, so that has been postponed until this Thursday after class.  But, our doctor talked to dr Kassim, and they decided to only do two ICE treatments and then wait 3 weeks and do a PET scan.  So that means that we only have one more weekend ICE treatment, which is great! Three weeks after that we will have the PET scan, and if it is negative we should be able to move forward with the transplant immediately.  It sounds like we should be able to get started with the Evaluation step immediately, and then the extraction and chemo and reinsertion as soon as they have worked things out with insurance.  Dr. Kassim did say that we can start the chemo as soon as the stem cells are extracted, so we don't have to do two trips.  Still a lot up in the air timing-wise, but I guess things will work out over time.

It was good to see the place where this all was happen, it looks top notch and we are pleased with the people we met there.  Everyone is so nice and kind and they all have such fun southern accents.  In the meantime we are trying to enjoy some time with Brittney's mom and each other, all together.

Postponement, hair loss and good news

We drove the 5 hours out to Nashville, TN, last Thursday to meet with the doctor that will be in charge of Chris' stem cell transplant. We got a few questions answered and came away with even more questions about scheduling and timing that no one but Time can answer. The appointment and blood work etc took an hour or two then we began the 5 hour drive back home to meet my mom who had flown in while we were gone.  Chris will do a post about what we learned there. I'm still not sure I understand it all. 

Chemo round #2 was supposed to start early the next morning. But when we got up there in Tupelo our Dr wanted to meet with us first and do an examination and check Chris' levels one more time since there were low the last time and the chest X-ray had showed an infection in one of his lungs. Our doctor told us he had to listen to the voice of caution and postpone the treatment for another week to give the infection (the source of Chris' cough) more time to go away before knocking Chris around with chemotherapy. 

We were really disappointed since the stem cell stuff looks like it'll drag this all out a month longer than we anticipated. More delays are just salt in the wound.

I was especially feeling bad because my mom had already flown out here. Would she think it was wasted time? Would she go home early? Would anyone be able to come out last minute and be here for the postponed treatment to stay with the kids so I could be with Chris? And it stinks that the postponement means I can't go to book club and we can't use the free tickets to MSU's first home football game. We were all really looking forward to those fun events. 

My mom and dad very quickly took many of those questions off the table when they told me they would just postpone her ticket home as well for another week. That was a big help and I'm so grateful for their sacrifice and support. 

Since we were already up in Tupelo we decided to get some things we needed at the stores up there before returning home: extra sheets and new bed pillows to make sanitizing our room and cutting down on the germs easier. We have for to get rid of this cough! 

Also we did some retail therapy and bought a TV.  Chris had been looking forward to watching football all weekend long in his hospital bed, and it happened to be Friday Night Movie Night. Coming home for a family pizza and a movie party made the whole postponement thing not cause only sadness. 

Anyway I really only started writing this post to say two things:

1- We shaved Chris' head! His hair was falling out allllllllll over the place. We were surprised it happened so quickly this time. BUt I had a hard time shaving it all off so I just cut it really short. That lasted a day and waking up to short little hairs all over his shirt, his pillows, my shoulder, and all over his hands was only a little bit less annoying than long hair everywhere. So we shaved it all off this morning. 

2- Some good news!! Chris felt the baby kick this morning! I had been the happy recipient of many jabs and bumps a day for the past couple of weeks. But Chris finally felt one!! It really makes me happy to have evidence of an alive little baby in there after all our scares this summer. I've never been more happy to be a trampoline.