Round Two Starts April 5...

Today Laura and I went to Duke and got the results from the last graft study. They were negative so we start again. April 5th is the big day with 3 types of chemo for 4 days and then one day of full body Radation. Last time they did the chemo over 5 days but they will squeeze it all in 4 days this time so there is time for the radiation.

John will do the same thing he did last time. Shots for 4 days and then 2 days of stem cell collection while continuing the shots. Those collection days take 6 hours each and the shots are twice a day. After a few days of the shots, he will have a good bit of discomfort and pain but should recover quickly after he is done.

They think the addition of the radiation will be a big key because it will bring my immune system down lower than last time. It will make more "room" for John's stem cells to make a home and kick out my stem cells. Maybe my stem cells just were not beat up enough last time.

We still have our apartment and we are ready. We have hit a lot of restaurants and had some time to rest, work and see some friends. We head back Monday for some test and John is headed up tomorrow morning for some labs to prepare. Then back Wednesday to move in. (plan subject to change)

For me, I am good. Nervous a little but good. To have so many loved ones willing to walk this journey with me means the world. My wonderful wife is ready for round two, even though I can get grumpy during this some. She was ready to start last week. My amazing brother and his wife Eliza are willing to do whatever they need. He told me he had 5 of them in him. (even though I know he would do more) Let's just pray we don't need that many! My parents will again burn up some miles on 85 coming to visit and do whatever's they can to help. Ripley(our lab) is quite excited about moving back in with them! And Laura's parents are wonderful to keep Bailey (our cocker spaniel), whom we love to FaceTime while in Durham, and make their visits.

Everyone has been so great about sending cards,notes, prayers, calls, text, and anything else I cannot remember. It means the world to us and keeps the spirits high! Thanks and we will need it all again!

Back Home...

We are back home and enjoying the break. We head back to duke on Monday to draw blood for the next study in hopes there is some graft there. I have been off all immunosuppressants for over 10 days now. If not, we are ready to start again! The results should be in the 26th of this month...

We have used our grill a ton and spent lots of time with the dogs. I've been able to work some but get tired pretty easy. (as to be expected) Otherwise, just taking it easy and enjoying the break. Forgot how nice HOME was!

Thanks for all the prayers, thoughts, cards, text end emails...

Go Heels!

DOT +49...Dr. Chao appointment

There is some good news and bad news.  Good news...I am typing this from my parents beach house!  Bad news, Dr. Chao says to do another transplant after a few weeks off to let me recover some from the first one.  He wants to do one last "hail mary" with another graft test a week from Monday.  Yesterday, they took me off all my immunosuppressants so he wants to make sure the graft will not come in.  He told us the chances were tiny for the results to come back positive but that time will be good to build back some strength. That test should take 7 days, so the 26th we should find out the results. 

We thought he was going to say do another transplant, but we thought it was going to be next week.  While the break will be great, we are kind of in a "zone" and getting back to life and then going back to Durham will be hard.  Plus, this pushes the end date into June.  I can go back to most everything except large crowds.  So you can imagine that I got some seafood tonight while Laura and I went OUT to dinner. 

Dr. Chao really did not know why the first one did not work.  He suggested that my bone marrow might not have been suppressed enough the first time, so the donor cells could not make a "home".  The next transplant he wants the same 5 days of chemo with the addition of light radiation to suppress me more.  With the addition of the radiation and it being my second transplant, he says my chances of a graft are higher this time.

So we headed east to the beach.  We are going to stay here through the weekend and then head back to gboro until the next transplant.  He said I could go back to work some. 

So the beat goes on and we start over if the results do not show promise.  We are going to keep the apartment and try not to get too settled in gboro since we know we will be headed back to Durham and getting back on the old routine. 

Thanks for all the love and support.   It means the world and helps us get through this!

DOT +47 Graft results in...

Today came in the third round of graft results.  The second result had 10% in one line and 0% in the other. Unfortunately, both stem cell lines are now less than 2% donor cells.  It seems the graft has been rejected and my original immune system has recovered.  Tough news to hear.

Now we learn more about the next steps.  Dr. Chao will be back on Wednesday and they all will discuss options from these results.  From what we hear, most likely we will need to start over with another transplant with John as the donor again.  But we will need to wait for all their minds to get together.

The cause of the rejection is an unknown.  It will be interesting to hear what Dr. Chao thinks, but they have told us it could have been any of the following: a virus, my immune system rejecting the cells, my spleen has been enlarged and that can cause complications, or a host of other things.

While these results are tough to hear, there are options and we will make it thru.  This does prolong our time in Durham but we are happy with our apartment.  This week should be interesting to see where we go from here....

Burns

DOT +46

Back to the grind tomorrow. We had our first weekend off and did some relaxing and took several walks. I have felt better recently since they have dropped some meds. (but don't worry, I am still on plenty...) We are waiting for the next round of graft results to be back early this week. Last week was a lot of waiting and things staying the same. Dr. Chao has been in China all week teaching and should be back Wednesday to hopefully some good graft results.

Not too much more going on. Tomorrow will be interesting to see what my counts are after a weekend off.

Go heels!

Burns