DOT +365 and the last post!

Well, this is it, the last post! It has been one year from today that I had a successful bone marrow transplant.  My health is great now and my immune system is building back up with John’s cells.  I will start slowing tapering my medicines down over the next few months and by mid-summer I should be off most everything.   Life is good.

I have thought about this post a lot and it is hard to think of what really needs be said.  Family comes first.  That's what my mom always said. 

First, my amazing wife Laura.  What a year this has been for both of us.  She put up with a lot and got me through this year.  From the middle of the night runs to the hospital because of a fever, to the day to day grind of the good news, bad news, back to good news, and back to bad.  I have read a lot at the old posts and it amazes me that we both did it.  We did it.  We really did it.  I would say “thanks” but that is just not enough.  All I really know to say is that I love you Laura! With everything I have…that's all I can say. 

John, Mom, and Dad have seen this since day one.  And now it is over.  (which is crazy to even think and I am not sure I can really believe it)  There have been tears, anger, and many laughs thru all this but now it is a reality that medicine has brought to our family.  You put your heart and soul into providing good care for me all my life.  At the end, we got lucky and John was a perfect match.  Dad said it best in his post, that this illness has brought us all closer together and that is a huge gift.  Love you all!

The one year mark is a big point that they always talked about with these transplants.  I have had some graft versus host disease appear but it has all been very manageable.  The sun is about the only thing that I really have to be careful with and that will always be with me.  But more and more stuff is being made today to help protect you from the sun and I will be a great customer of all those companies that sell those cloths. 

Work is great and it feels wonderful to be back.  It is nice to get up in the morning and go to the office versus the clinic and do something you love.  We go back to the clinic for checkups and I love stopping in to sat hello to the nurses.  They always grab my hair and laugh because they never really knew me with hair. 

Dr. Buckley still follows me and will always stay in touch.  She is a special doctor that has always been there for us.  Some part of me is very sad that I will not see her as much but I am sure we will both make it a point to see each other when we can.  We have started the process of finding a doctor here in Greensboro to follow me since I am now "normal"; or close to it.   It will be weird and scary to not be at a special clinic for my health care, but I am sure I will get used to the normal stuff everyone has. 

Duke will always have a special place in my heart.  For all those living in the triad, know that there is a wonderful hospital with the most amazing people right here close to home.  I hope to always be able to help and support the hospital because without duke, I would not be here. 

And last, the blog.  This was a place where we could go for support.  It was amazing.  Today there are 60,000 hits to the blog which is humbling.  It was a great experience to do this and I would recommend it to anyone.  Not only did it help you thru the tough times, it was a great way to communicate.  I still run into people that mention the blog and it always amazes me.  Thank you for all your support!

Now I pass the blood test for CGD.  It reads normal.  Normal!  Cheers to an amazing experience and a gift of life!

Dr. Buckley's visit went great!

I finally got to head back to the pediatric hospital!! (seems weird to say at 35...haha)  Laura and I loved seeing all the old faces around the clinic and seeing Dr. Buckley.  She looked great and just amazes me that she is still going strong as ever.

My appointment went well while she did a ton of labs.  I just talked to her tonight and got the results which show that my immune system still has some building to do.  Nothing to be alarmed about but she wants to keep an eye on it till it builds all the way back up.  She tested 3 out of the 4 parts of the immune system which took some time in the lab before the results got back.  A lot of the test involved the functions of my t cells which were hurt pretty bad by the chemo.

I am doing fine but I have gotten a TINY case of graft versus host disease on my skin.  I started back on my immunospuressment drugs and some ointment to put on the rash.  That worked great and it has gotten much better.  We were thrilled to hear it was such a small case and it should be all over shortly.  I saw Dr. Chao today and head back in 2 weeks to keep an eye on it.

Everyone is still doing well and I pinch myself everyday to make sure this was all not a dream.  Miracles do happen!

Headed to see Dr. Buckley!

First, I am very sorry for the delay in posts as promised.  Laura and I are doing good but have had a couple months where our minds were occupied.  A quick summary is that Bailey, our cocker spaniel, had to be put down due to liver failure.  It all happened so fast and the vets really never knew why it happened.  Our dogs are our family and it was a tough time, especially after the big year we have had.

Then Ripley, our lab, had a bad episode of "vertigo" for dogs and we thought at one point she was going to be moving on with Bailey.  She has since made a good recovery with small side effects that might be permanent.  

So with all that and the proud addition to the family, Bugs Blackwell, a golden doodle, (crazy man!) we have been busy.  We are enjoying the new puppy. 

I recently went to see Dr. Chao and he took me off my last immunosurpressment drug!  Yes!  That means Nov. 8 I get to go back to Dr. Buckley's clinic and see all my old friends.  I am sure she will do many many test to see what my immune system is like now.  (she could not do these until the immunosurpressments were stopped)  We look forward to hearing all the good news.  

So we are close to closing this chapter in our lives.  And boy do we look forward to that!  I have been hard at work and we now will try and plan a few trips over the coming months to celebrate being CGD free!  (don't want to celebrate too early till after Dr. B's visit and all the labs show a positive result) 

I know I have said this many times, but Laura and I with our families, cannot thank everyone enough for their support.  Being out in the community lately, we have gotten an overwhelming excitement and support from people.  We thank you!  

DOT +142

Things are still going great!  Laura's family had there beach week last week and we had a great time.  After getting back to work so fast, it was nice to take a relaxing break.  My energy has been really good and no symptoms of any health issues have come up. 

I am still waiting to get back to golf till I get the ok from the doctor's.  I was concerned about my surgery and being extra careful.

Work has been great!  It's fun to get back in the swing with the great group we have here at Terminix.  I head back to the doc on Monday Sept. 10.  Hopefully I can get off some more medicines then....

Soon, I will be heading back to Dr. Buckley's clinic.  Which will be amazing to walk in there CGD free.  That will be an emotional but wonderful time!

Thanks for all that follow and the support we have had!

Hope too see everyone soon...

Burns

DOT +131

Life is good! Laura and I are back in the swing of things. I am back to work full time and feeling really good. I still get tired after a long day, but it really is not that bad. I have been surprised how fast things recovered to this point. Seeing my labs next week will be exciting and I hope things have improved on that end.

We are heading out to the golf tournament today to see some golf. Since I cannot play yet, might as well watch it! Not sure when I can play again, but I hope shortly after labor day.

It has been great seeing everyone. The word sure has spread in Greensboro and the welcome from everyone back has been a humbling experience. Some people I never thought would know, have said something to me. All the prayers and support got us to today.

I really want to get off these medicines so I can get to an official discharge. That day will be when I can fully celebrate! And celebrate we will....

DOT +122

Things are still going great!  We had an appointment with Dr. Chao this past Monday and most labs were improving and we don't have to go back for 5 weeks! My liver function studies were elevated but that could just be from all the medicines I have been on.  Those will hopefully come down soon.  My hemoglobin was 11.7, WBC 4.2, and creatinine 1.2.

My energy is coming back more and more each day.  I have had to be careful and not do too much too fast.  Laura and I have really enjoyed being in our own home!  (except for the ac giving us a big problem)  It has been great running into everyone around town and we hope to continue to get out and about more and more.  The dogs are getting used to being back home and I am getting back to work some.  It's been fun using my brain and thinking again, haha.

The idea of me being cured from CGD is starting to sink in each day.  I am not real sure how to describe it yet, but it is a powerful and wonderful feeling.  They still have me on a good bit of meds and those should start getting peeled back over the next few months.   

I will try to do a post each week or so till I get the formal discharge and am "done" with the transplant process.  I will let everyone know when the last post is. 

Hope too see many of you soon around town and thanks for all the prayers and support since Jan and since I was 2.  Crazy to think I am doing so well after that darn spleen finally came out! 

Thanks...Burns

DOT +111

Friday we went to the clinic and had a great checkup. It was an exciting day because we were formally discharged from the daily clinic and now will be followed by Dr. Chao is his Monday clinic day! We don't have to go back until a week from tomorrow and then follow up visit will be determined at each visit. Both Laura and I were thrilled beyond words! The PA's and nurses were so excited for us and all said we still have to come back to the clinic for short social visits, which we will gladly do! (Dr. Chao's clinic is right next to the clinic)

Since we have some time off and they pulled my pic line, we headed east to the beach for some rest and relaxation. Don't know how long we will stay and it is nice to be able to make our own schedule and it not be dictated by clinic visits.

I am excited to get back to work and on a regular routine soon. I have been in the office some, but need to take it slow and ease back into everything. All the calls and well wishes have been great and we cannot thank everyone enough!