The 1040 Window

It is my one year transplant anniversary today!  Praise God!

First of all: How am I doing?  I am feeling GREAT!  I have energy to be a little active, working for NewLeads some from home, and getting back to Youth Group.  My “well being” is very precarious, though, as my body continues to strengthen and I am still on a very high level of immune system suppressants.  So I have to be very careful to not overdue it and avoid germs so that I do not get sick.  I also have to avoid a lot of sunlight as it aggravates my graft versus host disease in addition to conflicting with the immune system suppressants.  Healing is progressing a little slower than we would like, but not at all surprising considering the intense trauma at the beginning.  Still, overall, I could not be happier!

In order to celebrate what God has done, we have a special project we invite you to help us with:
Reading through the Old Testament, we were struck by how many times God told the Israelites to create visual reminders of His many miracles.  In one such case, the Israelites were told to set up a memorial of the miraculous Jordan River crossing by piling up stones.

“We will use these stones to build a memorial.  In the future, your children will ask, ‘What do these stones mean to you?’  Then you can tell them.”  -Joshua 4:6, 7

Inspired by God’s instruction in this story, we have come up with an idea for a fun way to praise God for protecting my life!  All who have followed my journey have seen an undeniable miracle of healing.  We are so grateful for your prayers, love and support and we invite you to rejoice with us and give God the glory for the things He has done.  We would like you to send us a sentence or two of praise to God for what you have seen Him do.  It could be what you have learned, how God has amazed you, a special Bible verse or just words of praise.  Anything you want to say to honor God for His goodness.  Then we will paint your sentences on some rocks and pile them up at our church so that there will be a visual reminder of what God has done.  When people ask what the stones mean, we will tell them!  It would be wonderful to hear how God has blessed you through our struggle.

If you would like to participate:
-email us at acboydstons at yahoo dot com
-call us and leave a message (we’re in the phone book)
-leave a comment here on the blog

PLEASE pass the word on to anyone you know who has been praying for us, as well.  ”Our God is a God who saves.”  -Psalm 68:20

Also, below is a Word document of this Hospital Log formatted so that it is easy to read.  A while back, I went to read the archived posts (becuase I really don’t remember them!) and discovered it was very difficult to read that way.  So I wanted to make it easily accessible and this is the result.  Please feel free to read and share this with anyone interested!  The first chapter is pretty intense reading.

Aaron Boydston’s Hospital Log

Lastly, since this is my “Hospital Log,” and I do not plan on going into the hospital again, this is likely to be our last post.  If you ever want to check in to see how we are doing, feel free to contact us and ask.  God bless you all!

“To live is Christ,”
Aaron Boydston

Overall things are going very well.  Well enough, that I think I may be ending this “hospital log” soon (I am REALLY planning on NOT going into the hospital again!).  Soon, I will even be picking up some at-home projects from NewLeads.

Also, I am working on compiling this blog into a document that is nice and easy-to-read.  I will have it posted here as soon as it is finished.  It is quite a story.

My graft versus host disease is now officially cronic (meaning not going away anytime soon), so I have been on a new medicine.  This medication has been really bothering my stomach and causing bad insomnia.  I was actually very sick on Christmas, though we had a wonderful day anyway!  Plus, relatively speaking, my new medication problems are no big deal.

May you well know God’s rich blessings this new year!

Oh my!  I just remembered that I never posted about what an incredibly wonderful Thanksgiving we had!  Last year, I was in the hospital for Thanksgiving and it just plain stunk.  Don’t get me wrong, we were so thankful for so much: I was alive and in remission (this was before my relapse in Jan ‘07) and nearing the end of my chemotherapy and hospital stay.  I was expecting to be home for Christmas and was likely all done with leukemia.  With regards to things-to-be-thankful-for it was a very lovely day.  With regards to traditional Thanksgiving activities, though, it was kind of miserable.  I could have no more than a few visitors and the food was aweful!  Since I was on a low bacteria diet, it was not just “hospital food,” it was hospital food purposefully made much worse.  On the bright side, that did give me another thing to be thankful for: I didn’t have much of an appetite anyway.

But this Thanksgiving!  Even WITHOUT comparing it to last year’s, Natalie and I agreed it was our favorite Thanksgiving ever.  On Thanksgiving Eve, Natalie cooked an absolutely amazing, traditional dinner and just the kids, Natalie, and I had such a wonderful time.  Later that eve, my parents came over for leftovers and I had a second dinner with them, followed by desert!  Then on thanksgiving day, we simply relaxed all day long, together as a family, and made a Thanksgiving tree.  After the sun set (I have to avoid sunlight), we went for a short visit to the Boydston’s gathering.  I put my mask on, we sanitized everyone there with a “Purell Party!,” and had a lovely time together.  All in all, it was a most marvelous Thanksgiving.  I could not imagine having a better one.

Currently, my graft versus host might be getting a little better.  Either way it does not matter much.  Since it is mild GVH, it is just really annoying (itchy, dry and very flaky skin), but it is actually helpful for not getting leukemia again.  I have another doctors appointment this Monday and we expect it to be pretty mundane, except that it will be the first time in many months that I will get stuck by a needle (the PIC was used for blood access).  This is only a big deal because after 18 months of treatment, my veins became very hard to get, which translated to very painful.  In fact, one of the most painful experiences thru it all was a little needle (can not remember if it was a draw or an injection).  It was one of, I think, three times, that I screamed from excruciating agony.  Thankfully, it was very short!  Needless to say, it left me with a little fear of being poked but it will probably be fine; we will see!

Overall, I am feeling pretty hootin’ good.  I feel good more than I feel crummy, I get little spurts of energy, and have an itsy, tiny bit of endurance.  I actually cleaned out my car the other day, though it REALLY wipped me out.  But I did it!  This is very typical for the 6-9 month period after a transplant but it is actually a little dangerous.  People start to feel stronger and better enough that they over do it and end up in the hospital, thus setting their healing back a bunch.  I have to practice a lot of restraint and with it being cold and flu season, I have to be very cautious.

I also want to mention something completely unreleated.  YoungLife Ojai Valley, a nationwide and local ministry, is having a fundraiser in the form of a raffle (YoungLife is actually the ministry that connected me to NewLeads, resulting in my employment there!).  Tickets are expensive, $200, but this means three things: 1) It is a great support for YoungLife 2) The prize is amazing 3) You have a very good chance to win!  For all the details see www.londonraffle.com.  If you are interested, HURRY!, because the raffle is on December 18, 6 PM.

Sunday night I could barely sleep, I was so excited!  On Monday I had a doctor’s appointment and was planning on having the doctor pull out my PIC line (basically a semi-permanent IV that goes from my heart, through a vein, and out at my upper arm; I have tubes coming out of my arm).

On one hand, it was not too big of a deal, because the PIC was not much of a bother and I was so used to having it.  On the other hand, it was a big milestone!  In a way, my PIC was the last, very tangible, remnant of the hospital.  In addition to that, pulling it out also officially ended my pain medicine (YES!!!), benadryl, and zofran.  Some exciting stuff.

It was not much fun getting only 3 hours of sleep but Monday was a GREAT day anyway!

The other evening I was taking a walk with my kids (getting my daily exercise!). We were having a very nice time with Michaela and Christopher laughing and running circles around me (literally). Well I was feeling pretty confident since I have seen quite a bit of improvement in my walking ability in the last few months and we were just plain having such a nice time.

Then a crazy thought occured to me. “I wonder what would happen if I tried to run?” So, being in the mood I was in, I did. I tried.

I cannot describe to you what it was like for two reasons. One, I have never experienced anything like that before. Two, it only lasted about 1 second so I did not have enough time to examine what was going on! All I can tell you is… it hurt. And I definitely can not run; it just is not physically possible yet. Now I can get around walking pretty good, at this point, I just had no idea how much of a different game running is.

So no running for now. But that day will come!

It’s been 200 days since Aaron’s transplant (for anyone who’s counting–like me)!  God is awesome!

Today, for the first time in 17 months, with no assistance, and with no fear of dropping him, I lifted up my son from the ground, held him up in the air and then brought him in for a hold/hug.

I am so thankful.

Today is one of those monumental days.  Believe it or not, Aaron’s stem cell transplant was 6 months ago today(on April 11th).   To that I must say, “Praise God!”

Then they cried out to the LORD in their trouble, and He brought them out of their distress. He stilled the storm to a whisper; the waves of the sea were hushed. They were glad when it grew calm, and He guided them to their desired haven. Oh, that men would praise the LORD for His goodness and for His wonderful works to the children of men!  Psalm 107:28-31

As my mom mentioned below, I am also sick.  It began as a sore throat and turned into a regular cold (very typical scenario for me).  Thankfully it is not a really bad cold, because I am miserable enough as is.  Also, it does not seem to be getting worse which is good because in my condition a little cold could easily progress into pneumonia or something.

May you all overflow with God’s grace.  -Aaron

Aaron is having what appears to more Graft vs. Host Disease. This time it’s the skin. Doctor Paquette continues to remind us: A little Graft (stem cells) vs. Host (Aaron) Disease is good.
            As the imported stem cells irritate Aaron’s organs, seemingly one by one, they can also destroy any stray cancer cells. As long as the stem cells don’t get over zealous in their attack on Aaron, they are doing a wonderful service.  Right now they could be killing skin cancer cells possibly caused by the radiation treatment, or leukemia cells that survived the chemo. Amazing!!

            Meanwhile, Aaron has gone from feeling like he has slight sunburn to a general itchy state. His skin is flaky and he is slightly red around the eyes. Additionally, he has a sore throat, which is probably a virus that has been going around Ojai (his sister was real ill with it two weeks ago.) Pray that this sickness passes quickly. On the positive side, he has maintained his weight gain (123-125 lbs.)

 Aaron was able to attend church for the first time on Sept. 30. When he entered, the congregation stood and clapped. I cried. 
            Thanks for all your prayers and continuous love. ALB

“For I will restore health to you and heal you of your wounds,” says the Lord….” Jer.30:17