DOT +80

Today has been a long but good day. First and foremost, it's Laura's birthday so we celebrated the best we could! She has been a real trooper through all this and been there every second. There is no way I could have done all this without her. I love you Laura! We will celebrate more back in Greensboro!

We had an early appointment at the clinic and got my first dose of ivig. A treatment that could be a long shot to help my counts. Its a drug you can react to but I did fine.

Then we got to meet the surgeon today and the appointment went great. (considering the circumstances) She was very patient and through which we were very impressed with. She said she would start trying to do the surgery laparoscopically and if that does not work they would have to make a decent size incision. She did not know when it could be scheduled and would try to get back with us on Monday. She still needed to talk with Dr. Chao about a few things before the full game plan was set.

I'll finish the way I started. Love you Laura and Happy Birthday!

DOT +78 ...squared...but who's counting...haha

There has been a lot of waiting the last few days, which I am just fine with. Big decisions like these need to be thought about and I am confident the doctors are using all the brainpower they can. Today, Dr. Chao reached out to my longtime Dr. and discussed my case. I should find out tomorrow what the final decision is.

So far, all indications are that my spleen is coming out. Probably 95+% chance. (or more) I expect them to start reaching out to surgeons tomorrow. I told the PA today that I have been spoiled my whole life with the best of the best doctors, please keep me spoiled when choosing a surgeon.

Yesterday my hemoglobin dropped 1.2 points in 24 hours. For those that do not know, that's a huge drop. My WBC is now down to .4 and platelets are 39. I got blood yesterday and more than likely I will need more tomorrow. They are also going to give me some treatment called IVIG tomorrow. It should help with my hemoglobin dropping so fast and hopefully reduce the need for all these transfusions. (I don't even what to know what the count is now)

To be blunt, I'm nervous as heck. But I guess that is expected. Thanks for all everyone has done! Soon this will pass and we will be back in Greensboro...

DOT +75 - All Bone Marrow Biopsy Results In...

All the results are in and it all looks good, causing a mystery. The density of the bone marrow is good, no viruses, and 85+ % are Johns stem cells. So now comes the question of why my counts are not increasing when the bone marrow looks good?

So far there are two theory's. (many you have heard) First is the fact that my spleen is so large it is "catching" or "filtering" all my cells and they cannot stay in my blood stream. This could be because my spleen and immune system is seeing foreign objects (johns cells) and "filtering" them thinking it is doing the right thing. Well, it's not. So taking my spleen out is being discussed this week. Issue here is I barely have an immune system, extremely low platelets to help my blood clot during surgery, and my spleen is so large (and full of blood) it makes it a more complicated surgery. That scares me. (even though most people can easily take their spleen out)

Another thing could be the immunosurpressment drugs could be keeping the counts down. The fix there is to reduce them. But then graft versus host disease could be a big problem and present a whole new realm of problems.

So we pray the doctors can all talk and come up with the best next step. My guess is they will give it some time just to make sure things don't just fix themselves. My WBC today was 1.0 (needs to be 3.5 or above) and I did not need any blood. I have been needing an average of 2 -3 blood transfusions a week. (which does not help my spleen)

We continue to thank everyone for the prayers, text, calls, emails and everything you do to keep our spirits high!

DOT +72

There is still several more test to still come back, but so far the bone marrow density looks good. My white blood count inched up the last few days but today made its first good jump! Today they stopped the shots that are supposed to help my WBC because they thought they were causing my spleen to enlarge. My spleen could be holding the counts back. So the next few days and into the next week will be big to see what happens to the white blood count.

Around here it's a crazy roller coaster. Today was awesome to see with the WBC of 2.2, but then they stop the shots that were supposed to be helping. But it is hard to argue because I can feel my spleen and how big it is. We hope the shots were not doing much and the counts continue the upward trend!

DOT +70

The bone marrow biopsy went pretty well. Not to say it felt good, but it was not as bad as I thought. Now the results will take up to a week to get back.

In the meantime my WBC has gone up a tiny bit. We are hoping that is a good sign that this graft can be saved. Dr. Chao came by yesterday and it sounded like he wanted to do a boost of johns cells at a minimum.

This will be a long week, but all we can do is wait for the results now. Then they can decide what to do.

Thanks for all the prayers, calls, text, and support!

DOT +67

The virus result is back and it was negative. Which means Monday it looks like they will do a bone marrow biopsy to test further. These test will be to see what the density of the bone marrow looks like and for virus' or other problems that could be keeping the bone marrow from producing the amount it needs.

My white count is now .7 and I needed another unit of blood today. I am feeling pretty tired these days but doing ok. I don't look as sick as I am, which is a good thing!

Not too much else to report. We are good here and anxious for what will happen this week. Hopefully progress!

Thanks for all the support!!

DOT +64

My WBC is still real low (.6 today), so we started to get a little worried. Then yesterday was pretty stressful because the new graft study came back and one line is still 96% but the other has dropped from 96% to 60%. That got us worked up because I do not want to lose this graft or see a start to a decline. We have worked too hard for all this!

We met with one of the PA's and she said they would discuss me during their division meeting today. And she assured a report from a doctor tomorrow. My doctor is in India teaching a group how to do these transplants.

We met with Dr. Long and he was very honest that something is wrong and they are not sure why. They did a test for the virus I just had to see if that has come back. Sounds weird but we hope that is it because there is a medicine for it.

Otherwise, they would need to do a bone marrow biopsy to see what is going on in the bone marrow. It could be a virus inside the bone marrow. (I don't know what they would do there) Or it could be possible the bone marrow does not have enough stem cells to keep up. Basically, their could not be enough factory workers in the factory so the output is low. This would take a boost of John's cells to fix.

So we don't know much now. These test take so long so it can be tough to wait. The virus test should be back Friday or monday. In the meantime, they have dropped some of my immunosurpressment drugs and increased the shots I get everyday hoping that will help.

I did get a call from my longtime doctor, Dr. Buckley yesterday. She was positive and thinks they can fix this. She wanted the immunosupressment drugs lowered. Just the call was wonderful as she still follows me everyday. (dad called her because he knew I was getting very worried) Not many people can say they have the healthcare I do! To have the full adult bone marrow group and then Dr. Buckley looking too. She is amazing.

So we wait again. And pray for some WBC's. I have a friend from college that has an infant getting a transplant in the pediatric department. As she says, grow cells grow!

Thanks for all the support!

DOT +61

We are now past day 60 (round 2)! My counts are still hanging real low. WBC is .7 (needs to be above 3) and hemoglobin just cannot stay up long. I needed blood on Saturday and fluids today. For a few days I was feeling so much better, but my energy level has sunk back again some. Hopefully the counts will come in soon and my energy will return.

One thing that could be effecting my hemoglobin is the switch from my A+ blood type to my new B+ (johns blood type) blood type. That could be going on now but they are not sure. When they draw a type and screen, my blood type is still A+. Time will tell...

Otherwise we are good. We go in everyday now for the nupegeon shot to help my WBC and to check my levels. Wish I had better news but that will come soon!

Thanks for all everyone has done!

DOT +58

Today was a good day. We had a record short trip to the clinic and then got to hang around the apartment. We got bored so Laura made a putt putt course around the house. Then I rode with Laura to the store. (I had to sit in the car while she was in there)

We grilled out again, which is a great sign that I felt like grilling out the last two nights. Otherwise, we are just relaxing. My counts were good enough to where I did not need anything today. But we are still waiting for them to start climbing. (at least they did not dive!)

Thanks for all your support!!

DOT +56

We got there today and they had good news for Laura and I. Today was the last day of all iv antibiotics and antivirals. The hhv6 results are back and there were just traces left so they stopped the medicine. It should take a week or two for my counts to rebound from the damage the antiviral did to them.

Also, there is some news on the graft. They had a problem and only one of three test were ordered. Unfortunately, it was the one that was the least helpful but it was 96% donor! So they all think the other two can only be so bad if the other is 96% but they will not commit to saying we are in the clear. The others were drawn today and should take a week or so.

Since my counts were low, I did need another unit of blood today. Hopefully things will start to rise slowly now!

DOT +55

Things are improving slightly. I am still on this harsh anti viral that is keeping all my counts low. Today they increased the dose because my kidneys are back working again. When your kidneys are not working, they back off the dose because you are not "clearing" the medicine so more is in your system. I am "clearing" it fine now so I needed more medicine.

Tomorrow is my last day of two iv antibiotics. So that will save some time in the clinic. Then we wait for some labs to see how the hhv6 virus is doing and go from there.

Hopefully we can get off this antiviral so I can start to get my energy back!

Thanks for all the support!

DOT +53

Yesterday was my birthday and we had a great time. The nurses had a sign in my room and Laura decorated the apartment. Both Laura and I's parents came and John and Gracie came to Durham for some burgers. John spent the night and took me to the clinic this morning. Below is a pic of the wall in our room at the clinic.





Things are moving in the right direction. My counts are really low, but the medicine can cause that. Hopefully just a few more days of the iv medicines and then my counts can slowly come back. Time will tell.

Also, last week a good friend I work with flew in from Arkansas to see me. Here's a pic of him and me with my bald head. I'm not sure if I have posted a pic of me and my hair. Good news is it is starting to come back in a tiny bit. Thanks for coming Berry!





Tomorrow we head back to the clinic. There's a good chance I will need blood, but that might give me some more energy. More to learn this week...