Happy Birthday Trent!

We had a fun weekend in SLC with the kids.  It wasn't all peachy, but it was certainly a time we will remember.  Trent was a champ through most of it.  I was really worried about how far he would have to walk from parking to the stadium, especially without his cane (which he forgot).  He did fine though.  We have decided that we have officially moved out of the stage of always having a stroller in the back of the car to always having a cane in the back of the car.  That's weird...I thought there would have been many more years in between those two phases. :)

I thought that the weekend would totally wipe Trent out but he was even better when we got home.  I guess that is what a vacation is supposed to do for you!  He had a really good day yesterday and spent much of the day in the wood shop. He has started a relief carving of a couple of trout in a stream bed.  I think it will be pretty cool when he is done.  It is so great to find him chipping away at his masterpiece instead of lying in bed.  What a beautiful sight!

This morning he is feeling a bit punky though.  This same thing happened last round.  He got a bunch of pretty good days and then the day before chemo he felt yucky.  I am not sure what is going on with that.  It is very annoying that it happened on his birthday too!  That's right...today is a very big day for us!  TRENT IS THIRTY NINE YEARS OLD TODAY!!!!  It is especially sweet because we were not sure he would make it to 38.  Now I expect nothing less than 89!  I decorated the dining room last night and somehow between five doctor appointments for the kids, doing laundry, and going to New Beginnings for Megan, I will have to find time to decorate his cake (which I made last night) and make his birthday dinner.

Trent, I hope you have a wonderful day.  You have brought me so much happiness, love, and pain.  Somehow the pain has made me love you more than I could ever have imagined and every moment of happiness is just icing on the cake.  We have grown so much closer together and we fit each other perfectly.  When I am weak you are strong, when I am down you help me up.  I am amazed at how much you can handle, over and over again, and you do it with a smile on your face.  You are the most amazing man and I am in awe that Heavenly Father saw fit to bless my life with you.   Happy Birthday and here's to 50 more! I LOVE YOU!!!

This was taken 5/9/2010 at our house in Nebraska, just after Trent was diagnosed.  Someday he will look like that again!

Mallory's Drawing

Mallory brought this picture she drew home from school last week.  I wanted to keep it forever so now it is up on the blog!  It is a picture of Trent laying in his bed watching TV.  There is writing on the blanket that I couldn't figure out for a while.  Then I realized she has written the names she associates with all the blankets Trent uses.  (Boise State, Nebraska, Love Family, and Camping)   All of these blankets were either made or purchased for Trent since his diagnosis.  The little pink box by the bed is his barf bucket.  She has also been leaving Trent messages on his Wellness Wheel that I laminated for him.  Her most frequent message is, "I love dad. Git rid of cansr."  Oh my, Mally-Wally-doodle-all-the-day, I love you!

Round 24 and Going Strong

We finished the last of the Neupogen shots last night which is always the worst part of chemo.  Yay!  Now on to feeling better!  Trent had a couple of really tired days this round.  I can't really blame the chemo though...it could possibly have been Daylight Savings coupled with the fact that I forgot to add the sleeping pill to the nightly pills.  But, it was probably the chemo's fault. ;)

Trent is looking so good lately-minus the crazy man hair that he insists on keeping.  He says it is his strength, like Samson, and won't let me touch it.  He would probably look much better without it but whatever, if he is getting "strength" from the 33 hairs left on his head, so be it. :)  I am not taking that away from him.

Last night I had a little pity party for myself.  I am very weary of this trial and all the uncertainty that goes with it.  I am frustrated that we are not more independent and are burdening my parents with our load.  I am missing having my own house to decorate-I LOVE to do that.  I am afraid for when we do have our own house too.  Is Trent going to be able to work?  Are we going to be able to afford the things we need?  The kids are expressing themselves in different ways and I am not sure all of it can be blamed on their age, or phases they go through.  Ugh.  All those questions and feelings dumped on me last night.  It is pretty lame timing though, we are being blessed immensely every day and I can plainly see that!  I think I must have been feeling the effects of Daylight savings as well.  After a quick cry and a good night's rest, I am over it.  Mostly. :)  

We are planning a little getaway for the family this weekend.  Just an overnighter in a hotel and some fun activities for the kids. I am excited to go do something where I can really focus on them.  It seems like I am way too busy (or lazy) during the week  to give them the individual time they need.  I often find myself too tired or ornery to love them the way they deserve.  I probably need this getaway more than anyone else!  The weekend can't come fast enough!

Straight Line out of a Curved Path

Trent was able to go to church with us on Sunday.  He stood up to share his testimony and made me bawl.  Of course.  We continue to be amazed and so grateful for all the love and support along with many prayers that have been given us.  I cannot deny that we are being carried through this whole experience.  The load seems to be just a bit lighter than it normally would be, thank goodness for that!

We headed to SLC bright and early yesterday.  Trent had round 24 of chemo a day early because the Infusion room was completely full for Wednesday.  While we were there Dr. Jones stopped in to see us and get permission to use Trent's story in a book he is writing. He was absolutely amazed at how good Trent looked.  He was all smiles, ear to ear.  It was great to see that reaction!  He said Trent looked better than he had ever seen him.   Yeah baby!  We chatted with Dr. Jones for about an hour about cancer and patient/doctor communication.  The whole premise of his book is that doctors need to have more open, honest conversations with their patients and be willing to admit sometimes that they just don't know what will happen.  Most doctors want to give you hope, sometimes falsely, and paint a confident picture of what will happen if you follow protocol.  We all know that is not Dr. Jones' approach.  He wants each patient to know exactly what they are facing, and still give them hope.   We have to be informed patients!  I told him out of all the doctors we have seen, he has spoken the most frankly with us.  I am still not 100% sure that is a redeeming quality for him. :)

As we were talking with Dr. Jones, I told him that no matter what happens, we are going to be okay.  We have included the Lord in every decision we have made and we feel like we have done what He has directed.  Even if the course we took did not lead to a speedy recovery, I know we were led by the Lord.  Dr. Jones smiled and said that he believes the Lord can make a straight line out of a curved path.  I believe that too!  Two trips to Boston hoping for a radical surgery and what we got was a successful chemo regiment?  If that is not a straight line, I am not sure what is.  As we are winding our way through this whole mess I can't help but notice how our priorities are changed, the things we value are different, and our vision is more focused.  Another straight line.  I can look back at our lives and see the curvy path we have followed and recognize the gentle guidance of a loving Heavenly Father, leading us to the straight path.  I recently read a quote by President Ezra Taft Benson that basically said the thing we will be most surprised by when we pass through the veil is how familiar our Heavenly Father's face will be to us.  I  have no doubt that is true.

Living Life

Round 23 has been pretty good to Trent.  Of course he has had the usual things like pain from the Neupogen shot and a bit of fatigue.  But overall things are MUCH better than before.  I am really enjoying the trend that seems to be continuing, each round getting better than the one before.  Trent had chemo last Wednesday and by Monday he was up and out of bed, even well enough to drive us out to see the baby lambs at the Jensen's farm.  Unfortunately the kids were so excited to see the lambs they ran out to see them and scared them all out deep into the field.  We didn't get to see much except their little behinds high tailing it outta there!  

Jarom, Brinley(Mallory's friend), Jonathan, Mallory, Megan, Zach, and  me in the back

After we saw the lamb's behinds, we drove into town to get some pizza and stopped by the new Ace Hardware.  It is being opened by a friend of ours from Providence.  He gave us the grand tour and sparked a little fire in Trent that hasn't been there in a while.  Now Trent wants to rent out a shop, buy a bunch of new tools, and make clocks.  Sounds fun, but oh so tedious!  I am just happy that he has something he wants to do.

 This is a pretty healthy looking Trent at Zach's band concert last night.  When he wears his hat he almost looks like he used to.  His eyebrows are getting darker and his eyelashes are longer.  He has to shave a couple times a week now but the hair on his head is thinning just a tiny bit more.  

We had such a fun time at Zach's concert.  His band is so much better than last trimester.  Trent was pretty excited to be there, he missed it last time.  It was nice to do something with Trent that parents do together.  Usually it is me taking pictures and trying to recreate it and tell all the details when I get home.  I am glad he got to go.

Yesterday Trent got a phone call from Dr. Kevin Jones from the Huntsman.  He is the one who did the surgery on Trent's hip.  Dr. Jones asked for Trent's permission to use him in a book he is writing.  I don't know all the details yet but we will meet with him next week when we go down for chemo.  He told Trent how impressed he was the first time we all met.  Trent walked right up to him, stuck out his hand and said, "You are looking at a cancer survivor."  At that time Trent was in pretty scary shape.  He had a giant tumor on his hip that was so infected with staph it threatened to take life immediately.  We all knew the odds were against us but Dr. Jones has really been the only doctor to lay it all out on the table and try to get us to comprehend and prepare for the worst.  He has definitely not sugar coated anything when he talks to us.  Sometimes that has made me uncomfortable but I know he doesn't do it maliciously, if anything it is because he cares about us.  I know that.  But it didn't make it any easier to listen to what he was saying.  There have been at least three different occasions when he has told us to go home and get our "affairs in order".  Well, we did that, and then continued to fight with everything we had.  We decided that living with an expiration date is not something we were interested in.  I will admit, it did bring a smile to my face and Trent's when Dr. Jones asked to include Trent in his book.  That means that Trent has made a difference to someone, and hopefully many more.  

Official Results

On Friday we got the official results from the CT scan.  I was very excited to read every little detail.  I was hopeful about what I would read, especially after seeing the scan on Wednesday.  I keep going over and over the picture of the tumor with a big black hole in my mind.  I am thinking of having it framed. ;)

Anyway, the report said that the two nodules that we saw on the last scan were unchanged as were the slightly enlarged lymph nodes.  The lymph nodes do not look diseased so that is good.  The big tumor now measures 8.7 X 8.5 cm, down from 12.8 X 8.6 cm in January.  There is still a slight plueral effusion on the left lung but the right lung is completely clear.  They also noted a slight pericardial effusion.  All of the surrounding organs, including the heart, look normal.  I am not sure about the tumor that was seen in the pericardium in Boston.  They did not find the tumor on the scan, only during surgery.  So, I am not sure if there has been a change in that tumor, I can only hope/assume that there has been. 

So far Trent has done pretty well with Round 23.  He is experiencing the normal fatigue and a bit of pain from the Neupogen shot.  We are trying to make sure he gets pain medicine about an hour before the shot and then head to bed shortly after the shot so he can sleep most of it off.  He has been out of bed and functioning pretty well for the entire afternoon and evening.  Hopefully that is a good sign for what the rest of the round holds for him.

Last week I was visiting a friend who also has cancer and her father told me about a book that he had read about a cancer survivor.  The survivor had interviewed several other Stage IV cancer survivors and found that they all had done similar things.  That prompted him to make a wagon wheel type chart to monitor his wellness in each of eight areas.   I loved the idea of having a visual for us to use to mark Trent's progress and areas that need a little work.  I made our own chart using the following areas: Chemo, Nutrition/Supplements, Sleep, Exercise, Mental/Spiritual, Social, Family (Relationships), and Activities/Hobbies.  Each day we can take a minute to assess each area and give Trent a score between 1-10.  This way he can see for himself what he needs to improve instead of me telling him he has to do something, like exercise.  The goal is to achieve 10's in all areas for balanced wellness.  We'll see how this goes...  

Do You Believe in Miracles?

The last few days have been interesting.  I have imagined every possible scenario and what my reaction would be to the results of the scans.  Funny thing, I never could have predicted what happened today.  

On our way down to SLC I was calm, cool and collected.  Trent was a ball of nerves.  I kept telling him we were going to be fine, hoping that my calmness would rub off on him.  As usual the scan took about one minute and then the waiting began.  We only had to wait two hours today which was really nice.  When Dr. Gouw came in he did not even greet us.  He walked right by us to the computer and said, "You gotta see this!"  I knew right off it was good.  He pulled up the scan and lined it up with last month's scan so we could compare the two. Then he scrolled down through the lungs.  As I watched the scan progress I kept biting my lip trying not to cry out loud.  I was completely entranced by what I saw.  What a difference!  Last month the left lung was almost completely white, indicating lots of pneumonia, a partially collapsed lung, and a whole lot of tumor.  This time the blackness was beautiful!  It looked like a perfectly healthy lung clear up until the tumor.  Pooh, the tumor is still there but it is shrinking!  There was a big black hole right in the middle of the tumor.  Necrosis!  Yay!  The tumor is dying!  At least half of the tumor was black in the middle and that is awesome!  There are two other nodules that we couldn't really see before because the tumor was so big.  However, each are on the perimeter of the lung and can easily be resected.  We don't know yet about the tumor in the pericardium but can only assume it is meeting its demise as well!  We will know more after we get the final report tomorrow.  

Dr.Gouw was completely shocked by the results.  He said he never could have guessed we would have such good results.  He gave all the credit to Dr. D'aDamo and the Spanish trial of these drugs.  We know better though. :)  He said that he never would have thought to use that combination for Trent especially since he had already tried both drugs.  He will also be using this combination on other patients now too!  Katie and Dr. Gouw were thrilled with how well Trent is doing on this chemo.  His labs were fabulous.  Katie jokingly said, "What are you doing, eating steak every day?"  YES!  He is!  He has a steak and some potatoes almost every afternoon for a snack.  Apparently that does his body good!  

The cancer sweats are almost completely gone after I upped the dose of his Lyrica to every day instead of every other day.  Thank goodness!  That was so difficult for Trent to deal with.  Now we just need to keep his innards regular and he will be one happy camper.  We are going to try milk sugar and hopefully that will do the trick.

Dr. Gouw was saying that when he looks at a patient's labs they are color coded for low levels or high levels.  He said Trent's last labs were a rainbow of colors because they were so messed up.  This time almost his entire reading was blue (normal range).  He said whatever we are doing needs to continue because whatever it is, it's working!  We are going for four more rounds of chemo and then a scan on May 1st. 

When we went to infusion for Round 23 we saw a volunteer, Mary Ann, that we had met once before.  She and Trent had talked a little about a month ago and she told him her husband was taking her to Walt Disney World.  She told Trent she would shout hello to him when she got there.  She did better than that!  She had Daisy Duck hold a sign that said, "We love you Trent" and took a picture.  She then made him the cutest scrapbook page with some of her pictures.  How sweet!  She told us that she had recently been visiting her son in Tobyhanna, Pennsylvania.  She went to a very poor church there that she says has a very passionate congregation.  She didn't know my name so she put "Trent and his princess" on the prayer book there.  Now every time that church holds Mass, their congregation prays for us.  Again, how sweet!  

Trent, Eric (Mary Ann's husband), and Mary Ann

Trent was feeling fabulous all through his infusion.  Our nurse was new and recently moved here from Hawaii.  How convenient!  We grilled her all day for details and advice about vacationing in Hawaii.  After infusion we stopped to do a little grocery shopping and he went right down the tubes.  That's when it hit me.  Even after all the great news today, our life still consists of chemo, chemo, and more chemo.  It kind of deflated my mood a bit as I watched Trent get more and more sick with each passing moment.  He hates the physical pain, fatigue, and sickness.  I hate the mental tricks chemo plays on him.  That is the hardest for me.   Thankfully that only lasts for about a week.  It seems like each round Trent has been given a few more good days than the round before.  I am so grateful for those tender mercies!

As we continue on this journey I have to wonder, what are we supposed to be learning?  What are we supposed to be doing?  Is Trent being spared and for what purpose?  I don't know the answers to all of these questions.  But there is one thing I do know.  Miracles happen.  Everyday.   I believe we have been granted one today.  I BELIEVE IN MIRACLES!!!