Feed your FAITH and your fears will starve .

Sunday, March 25, 2012

Tough Question

We are now five days into Round 25.  Trent had some pretty severe pain on days 1-4 but today he is much better.  If we only had to deal with the chemo it would be much different.  The Neupogen shot is by far the most painful thing right now.  We are trying to make sure that he gets a couple of oxycodone about 15-20 minutes before he gets his shot, then stay on top of the pain after that.  

On Friday Trent had a horrible reaction when I gave him the Neupogen shot.  He just exploded in screams, sobbing because of the pain.  Mallory and Jonathan were watching the whole thing and I think it really worried them.  Jonathan came running and grabbed Trent's arm and told him he would be alright.  Mallory tried hard not to let us see she was crying.  The next night when it was time for the shot she made sure she was right there, holding Trent's hand.  She shyly admitted she was afraid he would be in pain again and wanted to comfort him.  When I left the room she asked Trent why God gave him cancer.  That is a tough question to answer for a seven year old.  Trent told her God didn't give him cancer but was helping him to be strong enough to handle it.  I can't imagine all the things that go through her little mind, trying to comprehend everything she sees and hears.  Poor little girl! 

All things considered, this chemo regiment is sooooo much better than what we have dealt with before.  It is not easy by any means, but still, a major improvement.  Trent can still participate in most anything he wants to, with a little planning and some good timing.  These are just a few of the things Trent has been up to lately...

1. Learning relief carving with his early, and self purchased, birthday present--a Dremel.  
 2. Turning 39!  We had a fun dinner for Trent.  I made him the biggest steak I have ever seen and some yummy carrot cake.  We sang like crazy and had lots of fun blowing out all those candles.
3. Chemo! While we were at the Huntsman on Wednesday, a volunteer played some beautiful violin music for us.  It was nice but it made it really hard to hear while I was answering the phone for work.  :(
 4. Shocking the heck out of the doctors and nurses when he comes back time after time, looking better than ever.  His labs were nearly perfect this week!
 5. Catching the premier showing of Hunger Games.  Zach even won a prize in the raffle.
5. Making his delicious RIBS!  Trent is quite the chef when it comes to grilling meat. We all really appreciate it too!

Hopefully we are past the worst of Round 25.  Once again, it seems he is getting one more good day in the cycle!  We have only two more rounds of chemo therapy before the next scan.  The docs are already talking surgery and possibly flying Dr. Friedberg from Pennsylvania to do the surgery.  The results of the next scan will determine the next step.  We are praying like crazy that this good trend continues!

Tuesday, March 20, 2012

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!

Friday, March 16, 2012

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!

Wednesday, March 14, 2012

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!

Wednesday, March 7, 2012

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.

Friday, March 2, 2012

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.