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!

DOT +107

Laura and I are loving being back at home!  We had an appointment yesterday at the clinic and all my labs were great.  My hemoglobin has made a good jump to 11.1, which is close to the highest it has been in 3 years.  All the other labs were good and I needed no other supplements.

My surgery is still recovering mostly with my stomach and having to eat small but frequent meals.  They are really trying to get me to eat good because of all the weight and nutrition I lost.  That will come with time and with the help of all the good restaurants in Greensboro!

We head back Friday for another clinic visit.  All the support has been wonderful!  Seeing people around town has been a real treat.  The amount of people that have followed this blog amazes both Laura and I, which has really helped us through all this.  The real end and a formal discharge back to Dr. Buckley is soon!

Thanks!

DOT +100...Headed HOME!!!

Today we got the final ok to head back home tomorrow and start commuting twice a week for clinic visits! It's the best news ever. Laura and I were overcome with joy when we heard this and I don't fully think it has sunk in yet.

All my labs have been doing well with one transfusion that I had Sunday that has really stuck with me. So that shows I can start to spread my clinic visits out. My WBC is still really high and holding strong.

Going back is going to be the best feeling ever! We get to see our dogs again and just enjoy the comforts of our own home! We can't wait to catch up with our friends and everyone back in Greensboro. I still have some recovering and energy building to do, but there is no better place than home for that.

We will continue to say thanks to everyone for all their support thru these past 7 months! There is no way we could have ever kept our spirits as high and fought as hard without everyone. It's hard to believe now that I have John's immune system that is healthy and has working white cells.

God is Good!

DOT +96

It's Burns again.  The last week has been one of the toughest but yet the most rewarding in my entire life.  Just out of surgery I can remember Laura telling me about how my WBC has already increased to 2.0 in that short period of time.  So that was a sure sign that the surgery was a success and we might be near the end of this journey.  Now it is in the 5.0's!

Then the pain set in.  Wow, did this thing hurt for a while.  They gave me a lot of pain meds which eventually got to be too much and they had to back off all them.  The incision was bigger than expected so the recovery time has also been a little longer and tougher.  But I am OUT of the hospital today and an moving around.  My left side has a lot fluid due to my protein being so low so eating and movement is the most important thing for me right now.

Since my WBC is so high they have given me the freedom to go wherever I want. Laura, Gracie, and I went out to lunch today and I cannot say how much fun it was!  My eyes were huge walking into the restaurant.  I have not been anywhere but the apartment and hospital in months so this was a real treat.  Then we came back to the apartment and had a nice visit with Gracie who came up from Charlotte for the day.  To keep me moving Laura and I then headed to the grocery store where I was able to grab whatever I wanted! (I hit the cake department) We got some steaks tonight and John came up for the night.  I think I am done for the day so I think he will be manning the grill....

So it seems things are closing in and there is light at the end of the tunnel.  We are not sure how long this recovery will take before we can make a trip back to greensboro but knowing that it might be soon is good enough for now.  We will go to the clinic daily to check the incision and make sure my labs are still all good.  My hemoglobin is still low and they expect that to take some time to rebound.

I got an overwhelming amount of support in texts, calls, email, and prayers.  I wish I could have responded to them all but I read every one.  THANK YOU so much for all the support!

And one last thing, Laura's post yesterday could not have been more perfect.  To see Dr. Buckley in person was a dose of medicine that I needed!

DOT +95

The doctors are pleased with the progress but he is still dealing with lots of pain.  His left side still has all of the fluid, but they say that movement and food will decrease the amount.  Today they took him off of the all liquid diet, so he has eaten some lemon pound cake from starbucks, a PB&J, and mom is bringing him a Wendy's baked potato!  Everybody is glad to see him eating again!!  This will help him regain lots of his strength, along with him getting a good night's rest.

Dr Buckley came by and surprised him with a visit yesterday!  I don't think anything else has raised his spirits more.  He was so glad to see her, and she was so encouraged with his surgery and its results.  We are so grateful for everything she has done- she has kept up with him throughout this whole process and has offered multiple pieces of advice, and even more support to us, but more importantly Burns.  They have the most special relationship- and it was made evident seeing the two of them visit together yesterday.  There is more between them than just your average doctor-patient relationship.  She has gotten him through every illness and bump in the road since he was two years old- she knows him in a special way that no one else does.  Burns is so ready to be done with this process, and have it all behind him.  He told me he wants to be back under Dr Buckley's care.  I told him that the whole point of this was to cure him of CGD and that he will no longer need to go to Dr Buckley anymore, he will just go to a regular GP.  I asked him how special will it be when he can email Dr Buckley simply to see how she is, and no longer have to describe how he feels; he smiled.

DOT +93

The doctors are still extremely pleased with all of Burns' counts!  It is amazing what kind of results you can achieve just by removing a nasty spleen!!  He is still struggling with some of the issues related to the surgery, but the doctors are not concerned.  We have all been so impressed with the doctors and nurses at the hospital.  It certainly makes it easier to leave at night knowing he is in such good care!

Thanks for your continued care and concern!

DOT +91

Burns had another good day! Each day he is able to comprehend more and more. They are making him get up and walk three or four times a day, which is still very painful, but is good to keep him mobile. His platelets went up to 144 and his white count dropped to 5.1. However, this was expected. This is considered 'normal.' His hemoglobin is still low, but the doctors say that is due to the surgery. They took off his bandage, and his wound is healing great!! He is still using his pain pump, and until he is able to come off of that and get by on oral pain meds, being discharged isn't really discussed.

Thanks for the support!

DOT +90

Today, his recovery is moving along wonderfully. The nurses 'persuaded' him to get out of bed a few times to walk around to keep his blood circulating to prevent clots and to help speed along recovery! They said he did great, but it was obviously painful for him. He is more lucid today and can carry on brief conversations, but occasionally nods off in the middle (all due to the pain meds)! His pain is more managed and he is using his pump less! The surgeon stopped by and said they would change the dressing tomorrow morning. He is still on a clear liquid diet, but he has no appetite, thank goodness, so it's not a big deal!

And I saved the best for last:
White count- 9.2
Platelets- 122
Hemoglobin- 8.5

Not sure why the hemoglobin didn't jump up yet (wasn't here when the doctor came first thing this morning), but we will take two out of three!!!!!!!

This is wonderful, wonderful, wonderful news!

Recovery

While last night was long, he is doing so much better this afternoon! He is finally able to take short naps for about 45 minutes or so, and is starting to comprehend what is going on and have short conversations- he is still on tons of pain meds, but yesterday he still had anesthesia in his system which made him extremely loopy. He is using his pain pump less frequently, so I think everything is going great! The surgeon came by this morning and said he was healing beautifully, so they moved him to the bone marrow floor around lunch. Since his wound is ok, they are focused on managing his pain, and that will determine when he is released.

His counts have already made great progress! His white count went up to 2.4, platelets were 69, and hemoglobin was 9.1!!! These were drawn early this morning and won't be drawn again till midnight.

So, he is doing amazing! He is such a fighter, now more than ever. Some of you have known him for 30+ years, and have been around to witness him defeat illness after illness. I know I wasn't around for the majority of them, but I am willing to bet that the one in 2010 and then the two transplants have been pretty traumatic to say the least. But in the three short years I've known him, he has taught me more about perseverance and strength than anyone I've ever known and will ever know. The way he faces each new obstacle, let alone each day with such optimism, really amazes me, and all the doctors. After we were leaving the consult with the surgeon, she looked at burns and told him how he looked nothing like how she expected him to look based on his medical descriptions on paper. She expected a sick, suffering, hopeless man, and instead saw Burns who was positive, and eager to have the surgery to begin the road to recovery! I am beyond proud of how he has handled not only this surgery, but everything leading up to it. He has been so strong throughout everything, and is truly an inspiration!

Thanks again for all the support! You have no idea how much it means to us!!

Great news!

The surgery went great! Sorry for the late post, I'm sure people have been wondering what was going on! The surgeon was running behind this morning, but luckily I got to sit back with burns in the pre op till he was wheeled back. They started at 2 and then the surgeon came out and talked to us around 4:15 or 4:30. She said he did remarkably. She made one incision in an effort to attempt to do it laparoscopically, but quickly changed her mind when she realized the size and density of his spleen. The incision ended up having to be about an inch longer than anticipated, due to the size. She told us that it the hardest part removing it was not so much the mass, but the fact that the back of it was stuck to tissue and she had to take her hands and de-attach it. After the spleen was removed she said it was five times the normal size. A regular spleen can fit into the palm of your hand, and she said his was the size of a football!! We were so surprised when she told us that she ended up not having to give him any platelets! She said that even though he only had a few, the ones he had were great 'workers.' He is obviously going to be in lots of pain the next few days, but thank god he will have a morphine pump! Since he did so well he won't have to stay in the icu tonight, but the regular surgical unit, which is great because the icu has crazy visiting hours! They seemed very encouraged that he will be able to go to the bone marrow unit tomorrow night! Dr Chao told us this week that his counts should improve rather quickly after the surgery, and we just heard from Dr Buckely that his white count is already 2.0!!! It was 0.5 before surgery!!!

So all in all it went about as perfect as it could have gone! We loved both the anesthesiologist and the doctor; and burns could not have done any better through surgery (but I'm sure no one is surprised by that!). God answered one prayer getting him through surgery safely, so now we just have to get his counts up and get us back to Greensboro!

Thanks for everything!

DOT + 86

All the pre op work is done and we report tomorrow morning at 9 am for a scheduled 11 am surgery. Today was a big day getting blood, platelets, and meeting with the surgical and anesthesiologist team. We feel good about everything and are ready for this to pass. I was quite nervous after the pre op appointment today, but have now had some time to settle and am doing good.

The plan is for the surgery to be an open surgery (incision) about 6 to 8 inches long. It should take about 3 hours and then I hope to only spend 1 night in ICU where they monitor me for bleeding. Due to my low counts, they need to keep a good eye on me. (which I am happy in the icu because I know I will get good care and pain management) Then I should be transferred to the bone marrow unit until discharge.

We just got news today that my blood type has now changed to Johns blood type which is more proof the graft is working! This means we are doing the right thing to get this spleen out!

Laura and I have received a ton of text, calls, cards, and emails today. We cannot thank everyone enough. This has been a long journey for Laura and I and we hope this is the last chapter.

God is Good!

Ps. Someone will be updating the blog tomorrow....

DOT +83...Surgery scheduled

The removal of my spleen is set for this Friday morning. We were glad to hear so we can get it over with. The surgery will now have to be an open surgery which they believe is safer with my circumstances.

Dr. Chao said today that he is expecting a bounce in my counts quickly and that my recovery time in the hospital should only be 2-4 days as long as there is nothing unusual. I'm not getting my hopes up with the 2 days. After that, the outpatient clinic can monitor me daily.

They will be sending my spleen to the National Institute of Health in DC for culturing. The organism I had in 2010 can not be cultured at Duke and they want to see if it is still in the spleen.

We should find out more this week. But I have become more and more comfortable with this surgery as it gets closer. There is a great team here looking after me!

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...

DOT +51

I am back at the apartment! Doing better with my kidney functions better and potassium lower. They are keeping me on several iv antibiotics and one iv antiviral that I can get at the outpatient clinic daily.

Laura and I are both glad to be settled back in. We have an appointment tomorrow morning at 8 to see the next round of labs. There is a good chance I will need some more blood in the morning. (the antiviral medicine does that)

They ordered another test to see how the virus is going. The results show how much is there so we will have a better idea of how long to stay on some of the medicines.

Thanks for following the blog! Hoping to put some good news here soon....

DOT +50

I am still in the big house and will be until at least tomorrow. Great news is that my potassium has gone back down to the high part of normal. Anything with normal in it is great! I am still here mostly for observation because of my high potassium. They really don't want that to go back up.

Both the kidney doctors and the infectious disease doctors have been by with their team and they agree with the course that my doctors have taken. To continue to treat this virus with the particular drug and to raise some medicine to bring the ph of my blood back to normal.

The one piece that has worried us is the graft. They did another graft study yesterday and it will take about a week to get the results. Some doctors say this virus can cause a problem with the graft. Dr. Chao came by this morning and he said if it has hurt the graft, a boost of johns cells could help. But time will tell. The good piece of news is that my graft came in strong early so we pray that it is strong enough to hold on. There is not a lot of studies on this virus so the doctors are not committing to much.

Hoping to get back to the outhouse tomorrow!

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

DOT +49

Sorry for the lack of post but things have been busy. I'll try my best to catch everyone up from what's happen the last week.

For several days in a row my liver function studies started to rise. The docs decided to do an ultrasound last Thursday and it showed some blockage in one of my ducts around my liver and gallbladder. It could have been a stone or just some sludge. (Laura said I was trying to copy her and get gallstones...haha)

So on Friday morning we get to the clinic and they have a scope scheduled that day to go down and try and look to see what is blocking it and also grab it if they could. BUT, for once in my life, I did something medically on my own and passed whatever it was. Friday morning my liver function studies were all much better. So they canceled the scope and did an MRI. (I hate those things!). The MRI went well and it was all normal. So nothing further needed.

Monday we showed up to the clinic and we find out I have a virus, this one is called hhv6. A lot of people have it in tiny amounts that stay dormant, but when you are immunosuppressed like I am, it can multiply and become a problem. With that, they started me on an anti-viral medicine.

A few hours after my first dose of the medicine I started to get chills and spiked a fever. So Laura and I headed into the hospital and I got a dose of iv meds, blood cultures, and was monitored for a while. I started to feel terrible so they kept me overnight for observation.

This morning my counts did not look great. We expected some of this because the anti-viral medicine can cause your counts to dive. But my potassium started to get high (6.0) and my kidney function studies again went high. I just met with the kidney doctors and it looks like my kidneys are not disposing of potassium like they should. They are giving me some bicarbonate to help bring the ph back to balance in my blood. The kidney docs are coming back so they might have more suggestions. Potassium getting high in your blood can be dangerous, so I am glad they have acted so fast. I feel confident it will be back down soon.

So I will be in the hospital for at least tonight, maybe more. I think some Infectious Disease doctors are coming soon just to make sure the fever last night was not from a bacterial infection or anything like that.

Today is dads birthday and he was great to come up this morning and spend some time and bring me breakfast. Happy Birthday Dad!

Believe it or not, I look pretty good considering all of the above. The only time I felt real bad was during the high fever. Now if this virus can go away and my kidneys can start doing what they should, then we can go back to just worrying about my spleen.

Thanks for all that follow the blog!!! This will all pass soon and we will be back in Greensboro!

DOT +41

The doctors still think I am doing great but my counts right now are not as steady as we would like. This is due to my spleen infection that I had in 2010 and how my spleen is still enlarged today.

They think my marrow is producing what it needs at this point in the transplant but my spleen is soaking all the blood up and keeping my counts low. On Friday my hemoglobin was real low so I needed another blood transfusion. Today it was 7.9 so they did not give me another transfusion. (normal protocol is a transfusion is needed when the hemoglobin is below 8 but due to my spleen, they let me go to 7.5)

We get tomorrow off and it looks like we will start to get several days a week off. I am feeling good but my appetite is still struggling. Now is the time when patience is the most important thing. We will have to wait out these counts getting better and then we can go home. Right now, it's too hard to give a good guess on when that will be.

Thanks for all the prayers, emails, calls, text, and cards!

DOT +36

We are heading in the right direction and my counts continue to do well. They still have a long way to go before they are considered stable, but they are good enough to get the day off from the clinic every once in a while. Today we have the day off!

They dropped a couple of my medicines yesterday and will be talking this week about dropping some more. I now have some of johns working cells so they are confident those cells are working and are beginning to do their job.

I am still on a lot of immunosuppressment drugs, so infection is still a big worry. The immunosuppressment drugs target a specific part of the immune system to prevent graft versus host disease. But good news is that the other part of the immune systems are working well.

Bringing me down from all these drugs can be tricky. We want to leave the drugs that support the suppressed part of the immune system and then take away the rest that are not needed. That will take all the doctors putting their minds together to make sure we do it right.

Otherwise, Laura and I are doing well. These days off are nice because we have been going to that clinic everyday since early January. I am still not eating much, but hopefully my appetite will come back soon.

Thanks for all the support!

DOT +31

Today the other "line" of the stem cell test came back. It too was 98% donor! This test was not as important because my defect was in the first test. So if the first one was fixed, we were good to go. But it is nice to see a full graft coming in.

The last few days I have had some stomach issues. They did a few test for some infections and so far so good. They are also leaning towards doing a scope down to my stomach because some of the symptoms are similar to the graft versus host disease. But the last 24 hours have been good so I think they will wait a while for that.

They gave us the weekend off from the clinic! Our first one in a while so Laura and I are not real sure what to do. Haha. We are so used to just getting up and heading to the clinic. But it will be nice to just relax this weekend. If at any point I start to feel bad, they said to just call and come in.

The news this past week has been what dreams are made of. But even more so, was to see all the support and cheering everyone has sent to us. We have been flooded with post, text, emails, and calls; and it has been amazing and put many of smiles on our faces. We are lucky people to have such a great support group pulling us through. I know Laura and I are ready to get back to Gboro and we will be there as soon as we can!

Home Stretch

Burns,

How you found the courage to go through all this twice is beyond me.  I’m going to email Webster's and tell them to put a picture of you next to their definition of PERSEVERANCE.  You and Laura have been through HELL and you both deserved every bit of the good news you got Friday night.  There hasn't been a minute since January where I haven't thought about how you are doing and this won't change until the day you turn in your keys to the apartment in Durham.

Keep hanging in there.  You'll be home soon.  We have lots to do.  

I would have given you my last stem cell if they would of let me.  

Love,

Your Brother

DOT +26

Friday night at 7 pm, I got a call from a PA at the bone marrow clinic. My first thoughts were not good because they never call. It was Peggy and she asked for me to sit down ( so I did). She told me that one study had come back and the results show a 98% donor cell population! The graft has set and is working! Wow, was that incredible news. She did not know much else and said we could find out more over the weekend.

My counts were good Friday so they let us have the day off Saturday, which was fun because Laura and I love to watch the Derby so we had great tv all day! Todays visit they were very pleased with the results but also said to be cautiously optimistic. We are still in the early stages and things change fast. But the fact that there is so much graft, is wonderful!

So now we continue our day to day routine. Today my hemoglobin was 6.5, the lowest it has been. I received two units of blood and a lot of magnesium. My WBC keeps going up and down, but that is to be expected in these early stages. I am still having fevers most nights, but they are very low and nothing has grown out of the cultures.

Right now my blood counts and graft versus host disease (gvhd) are the two areas of focus. Last transplant there never was much of a graft, so we did not worry about gvhd. Luckily, this time there is a graft so we need to be looking out for that a lot.

This news is simply amazing! To see this process really start to work is unbelievable. To be honest, I am not sure if it has hit me or not. Or more so, if I believe it or not. Maybe that is my mind protecting myself from another letdown. But the test showed the numbers and Dr. Buckley's friday night email giving us an "attaboy", means the world to us!

DOT +22

Today I finally got a central line and that is a big help going thru all this. It allows them to draw blood and speed up a lot of these strong antibiotics. Also, it is easier to manage at home.

My fevers are still around but all very low below 100.5. Some Tylenol and I start to feel better. Again, they think and hope they are coming from the graft coming in.

My appetite is up and down but we are trying hard to keep eating. I know when I eat I feel better, but sometimes it's easier said than done. Laura has been perfect with giving me a little push to eat but not too much. I bet she had no idea she would know so much about all this stuff! And she does!

I am still on 2 strong iv antibiotics that they would like to stop but first want to see if there is any graft cells. (johns cells) the graft cells would help fight infections.

So they have taken some blood and we are not real sure when those results will be back. Maybe Friday or first part of next week. They did 2 different types of test, one was the regular graft study, and the other is one special for my illness.

Otherwise we are hanging in there! My counts are doing as expected and we just pray and hope the graft still is working hard!!

Thanks for all the prayers, thoughts, cards, and encouragement!

DOT +20

The white blood count yesterday was 5.5, so they stopped the shots. Today it dropped to 2.5 without the shots, which we were pleased with. So the white count is doing just what we want and that is what is most important.

On the other hand, they are still puzzled by all my fevers. Pretty much the last 24 hours I have had a fever every 4-6 hours, when my Tylenol where's off. They all think it is the graft coming in but at the same time do not want to stop these strong antibiotics. When all your counts are already low, a 100.2 fever just wipes you out! So we have been begging for Tylenol and they have been good about giving us approval to take it. Problem is at 4 am you have to call the inpatient unit and get permission. So sleep is lacking a little...

They also talked today about doing two test that would let us know if their were donor cells in my blood. They said just take the first test as a baseline and do not get too excited about it.

My appetite is still extremely low. Between that and the fevers, I am not the most jolly person you have ever seen. But we are taking it day by day.

DOT +18

The white count as started to really come in to 3.6! And the docs seem very happy about that because those cells can help fight and keep these infections away.

I am still running several fevers per day ranging from 100 to 101.5 and the docs think they are coming from the graft coming. But with such serious infections in my bloodstream last week, the docs are not stopping the meds yet because those fevers "could" be an infection. (although they think that is a longshot)

So the main thing we are waiting on now is for the fevers to go away and be able to drop the strong antibiotics. Due to all this, it has been very hard for me to eat. My appetite it basically zero and I have to make myself have a few bites of food. Hopefully soon that will come back because I love to eat!

With the white count coming in nice we are really excited! But since the last time, we are excited with caution. The next few weeks will be interesting watching the white blood count but not knowing the full details. But the best things come to those who wait! And we are praying that it's the best possible result!

Burns

DOT +16

Well, I have been in the "big house" the last few nights for the continuing fevers. After the last hospital stay, they pulled my original line (big iv) and waited 2 days and then put another in. On Tuesday they ended up pulling that line also because we felt it was getting infected also.

The infection that I got is a really nasty one and is hard to get rid of. They have me on daily meds and more pills than I want to talk about. So this time they discharged me without any line and I will go to the clinic and get a regular iv everyday for my meds. (oh joy for all those needle sticks!) The infections love to live in these central lines and can really grow in them.

Infections are a big part of a bone marrow transplant risk, so that's why they are taking this so serious. Especially during the time right now when I barely have any white blood cells. Sometimes we get so focused on the infection we forget to ask about the graft.

On a better note, my white blood count is up to 0.6 now and moving slowly! Slow is good from what they are telling me. I need those good white cells to help fight this infection. They will wait for a graft study to really see who's cells they are.

Otherwise we are good. I now have NO hair. The nurse in the hospital took a razor to it because it started to fall out like crazy and it was gross. It really is not that big of a deal since I have had a buzz cut for so long.

Thanks for all the prayers, text, calls, cards, and thoughts! This one is definitely harder, but the prize at the end will be even bigger!!

DOT +13

Unfortunately the last 36 hours have not been 'smooth sailing.'  Yesterday Burns needed both blood and magnesium transfusions, which made for a long day in the clinic.  However when we got home, he took a turn for the worse.  He slept all afternoon, and when he came out around dinner, he started to run a fever. It slowly crept up to 100.5, which is the magic number to call the inpatient clinic.  With all that happened last week, they wanted us to come in for blood cultures to make sure nothing new was going on.  Thankfully they had us in and out in pretty quick.  BUT, his fever spiked up at 102.5 and was accompanied with severe chills.  Needless to say we were up most of the night.  Today, the fevers continued so they decided to check Burns back into the 'big house.'  They gave two explanations for the fevers.  One is that his picc line might be infected with what he still has from last week.  Another more positive reason, is that you can get fevers when the graft is coming in!!  So it's great that the graft is coming in, but bad that he feels so rotten!  They are hoping when his fevers die down he will be able to go home.  While there, we will bring him his biscuitville in the morning, and whatnot throughout the day! We will keep you posted.  Thanks for all the support!

DOT +11

The last few days have been long ones. Good news is the pain behind my right kneecap is not a blood clot and they will look more into it tomorrow. I am still running small fevers in the 99 range and the medicines for these bacterial infections just wipe you out. But, it's good be in the apartment and not the "big house". My white blood count is still .2 and I did not need any other supplements today. We will continue to treat the infections aggressively and also look more into my knee this week. Other than that, rest is a big key. Also, my appetite has gone to nothing, so we are trying to eat as much as we can. Some of those boost drink have been helping me get some calories. Thanks for all the support, prayers, cards, calls and text! The last few days have worn us out, but will hope to rest well tonight and be right back to our full strength.

DOT +10

After a long day of transfusions, and waiting on ultrasounds, the Blackwell's are tired! Burns hemoglobin dropped again, so he needed a unit of blood today. His creatinine was elevated, and they are concerned it might be due to his immunosuppressants. They drew some tests today, and we should get the results back soon and will adjust the medicine accordingly. They are staying on top of it early, to avoid further damage to his kidneys. We inquired about him possibly receiving one iv antibiotic instead of having to swallow so many pills. Just the thought of them make him nauseous- who can blame him, you should see the number he is on! Hopefully we can get the 'ok' on that.
Yesterday he woke up with a pain behind one of his knees. We thought maybe he just pulled it or leaned on it awkwardly. Today, we showed the PA and it was swollen, and he sent us to get an ultrasound, which unfortunately resulted in hangin out in a waiting room for a few hours- thank goodness for the ability to rent movies on iTunes! They think it might be a blood clot, but with his platelets being so low, they will be hesitant to do much unless absolutely necessary. The PA was going to call us tonight if it came back serious, so knock on wood, I think we are in the clear!
Till tomorrow...
Laura

DOT +9

It was great to be back in the clinic today.  The germ I got has grown out more in the cultures and they now know a lot more about it.  They say I picked a "tough" one but that there is a medicine out there they will get it.  During this time of treatment I will have to be in a private room and be on "contact isolation" to protect other patients from getting the germ.  That is not that bad, just a pain every time you have to go to the bathroom or get a drink you have to get all dressed up like in the pic below.  Plus you look funny, haha. 

Below are my labs from today:

Test---------------- Burns------- (Normal Range) 
White Blood Count---- 0----(3.2-9.8) (this will go to 0) 
Hemoglobin----------- 8.8----(13.7 - 17.3) (they try and keep it above 8.0) 
Platelet---------------11----(150-450) (they try and keep it above 10) C
Creatinine------------1.7----(.6-1.3) 

You can see that I have "bottomed" out a good bit.  Now we wait for the WBC to slowly come in.  The docs and nurses do not seemed alarmed and say they like it to come in extra slow, which means the graft can be part of that and not my original cells.  

So we head back to tomorrow and see what this roller coaster has for us.  Also, its about that time to start thinking about when my hair will start falling out.  Last time I kept some, I am not sure I will be so lucky this time.  

Thanks for all the support! 

DOT +8

I'm out of the big house! A picc line was put in today that allows me to get my meds outpatient. The docs and nurses in the big house were all great and really focused on getting me to a point where I could check out.

I'm feeling better but still tired. My white blood count is still zero so they have doubled up the nupegeon shots that will help jump start the stem cells to make white blood cells. So far, this is all normal and much slower than last time. (which is good)

I will stay on some iv antibiotics for a few weeks at the clinic to make sure these bacterial infections are long gone. Otherwise we just head into the clinic daily to check my counts and wait for the graft to come in.

Thanks for all the support!! It means the world to us....

Burns

DOT +7

I am still in the big house, but they keep saying tomorrow might be when I can escape. No more fevers so that's a good sign that they can put another line in to use as an outpatient. I have never understood hospital stays as they are where the sick people are but they don't let you sleep longer than an hour at a time. They draw blood around here at midnight?? What?? You just have to laugh at it!!

My WBC is still zero. So hopefully that means my stem cells were beat up pretty bad and Johns cells are setting up shop and will start producing white blood cells soon. The last transplant I was at zero for just one day. (this is day 5 of zero). My hemeglobin this morning was 7.5 so I had to get another unit of blood. Most of my other counts have been ok. We are trying this time to not pay too close attention to the daily labs and look at the trends and bigger picture.

Dr. Chao is on call in the hospital so I see him a lot. He said today that these bacterial infections should not affect the graft from coming in. Good news!! And every time we talk he is trying to get me out of here. He has a great repuatation of getting people out of the hospital the minute they can.

Dad brought breakfast and Laura brought lunch and dinner. Some might think this is funny but over my 34 years and a ton of overnight stays (some as long as 7 weeks) I have NEVER eaten a hospital meal dilivered to my room! I know, I'm spoiled. (ask Laura..) I hope this is my last one and I am not going to end my streak now!

Otherwise I am good. For a line infection that got to my bloodstream I feel really good. I have had this in the past and felt so bad I could barely lift my head. My bet is I will be on a lot of iv meds for several weeks to make sure this stuff is long gone. But that we can handle at the apartment.

Again, all the cards, text, messages, thoughts and prayers mean the world to us! It keeps us going every day!

Burns

DOT +6

The last 24 hours have been a little wild. Yesterday I was very tired and took a nap. When I woke up I was starting to get a fever. We thought it was from the nupegeon shots I started yesterday. When the fever hit 100.5 at 7, we called the inpatient unit and they told us to come in for some testing.

They drew some cultures and started me on 2 different types of iv meds. With no white blood cells, any fever I have they must act upon fast. We stayed on the inpaitient ward until around 1 am and finished the meds and went back home. When we got home, another fever poped up and rose to 102.1. We called back twice and they told us to take Tylenol and wait it out till the morning since I already had a lot of iv meds. Not much sleep last night!

When we got to the clininc this morning, a culture had grown out of my central line (a huge iv where all my meds go in) So they had to pull my line and check me into the hospital for a few days of intenses antibiotics. They cannot put another central line in until blood cultures are all negative. I need the central line on order to get all my meds as an outpatient.

The bacterial infections that grew in the test were gram positive and gram negative. They are about to start several different iv antibiotics as I type and they hope it will be cured up pretty fast. Good news here is that I think we caught this very early. Another reason they have the 24 hour care for patients like me that need attention fast.

So I am in the "big house.". The joke around here is the outpatient clinic is called the "out house". I never thought I would say this but...send me to the outhouse!

Luckily it should be a short stay. Laura, mom and dad will be so kind and bring me food. I CANNOT stand hospital food. Then soon we will be back in our apartment.

Thanks for all the support!!

DOT +4

We are 4 days post transplant and the roller coaster ride has started. At times, I am feeling pretty good and then things go south, but that is expected. Yesterday I had to get my third unit of blood and some magnesium because those counts were low. The magnesium really messed with me causing me to feel real hot and break out into terrible itching. So they stopped the mag before it could be finished. Good news was today all my levels were good and no supplements were needed!

My white count both yesterday and today was zero. Scary to have no immune system. They will start tomorrow the nupegeon shots to help jump start the stem cells to producing some white blood cells. We do not know how long that will take. The last transplant, my white count bounced back real fast, which was the problem because it was my own stem cells that started to produce white blood cells. This time we hope my cells have been damaged too much and Johns cells will be able to start producing white cells and multiplying slowly bringing in the new immune system.

I can definitely feel that they have really beat my immune system up this time. I have been very tired and just hanging around the apartment. Both Laura and I's parents came by today for a nice visit and Laura and I plan on having a quite couple of days. We will wash lots of hands and take many of meds.

Thanks for everyone reaching out to both Laura and I! It means the world!

God is good.

DOT +2

After both stem cell infusions and two units of blood, I am starting to feel better. It's amazing sometimes how much better you feel after a unit of blood. (sounds gross and vampire like but it's the truth)

Today was a long day at the clinic but both Laura and I rented a movie and made the best of it. Along with the unit of blood I got a liter of iv fluids because my blood is showing some signs of dehydration. But most of my fluids are again going to my belly. I'm starting to look pregnant again, maybe 2 months, haha. They will montitor that close over the next few days to make sure I am not retaining to much fluid.

Since I was feeling well, we got to grill out some steaks tonight. Which was a nice treat and also could help my hemoglobin. Dr. Buckley always encouraged me to eat meat growing up.

John is feeling much better now and is back at work. He had some leg pain but that is going away pretty quick.

We head back in the morning for another round of blood test and see what needs to be done next. Thanks for everyone's support!

Burns

Second Day of Transplant #2

The second half of johns cells were transplanted today. I got another 3 million stem cells to build a new immune system. The transplant went great and was infused is a short 40 minutes.

Due to this being the second go around and the addition of radiation, the effects have been harder. Most of that has been in my stomach as an acid pain or burning sensation. (different from last time which was nausea) The clinic gave me some iv Pepcid and I can take some of over the counter the next few days to help me eat and drink. Some of the drugs I am on are hindered by the pepcid so I have to use it sparingly.

I can definitely tell they have brought my immune system down lower this time to try and help the graft come in. My hemoglobin was 7.0 today, the lowest I can remember since I was 10 or so. They gave me a unit of blood in addition to the cells and will probaly repeat another unit of blood tomorrow.

I am slap worn out right now! I am really glad that the preparation and transplant is behind us and ready to start the waiting game. Right now it is hard to express in words all that is going on. My nurse today did a great job of keeping all of us laughing through the transplant. Laugher is the best medicine!

Here are some pics and will post again tomorrow...tired!!

Day of Transplant #2

First off, we found out that they collected 5.6 million stem cells from John yesterday- HUGE! That is miraculous! (We have to give Eliza credit for giving him his shots!). John was such a trooper both yesterday and today. He is the true embodiment of a perfect brother, one who would literally do ANYTHING to help his brother out. As soon as we found out that we had to do a second transplant, John immediately and willingly agreed to be the donor, knowing what he would have to go through. He is giving Burns such an amazing gift- the chance for a better, healthier life- something that no one else can give; all I can say is, what a remarkable brother, and person!

Burns handled radiation wonderfully yesterday! He was a bit nervous, having never experienced it, but as with everything else he faces, tackled it head on. Luckily he didn't have any of the nausea that they said some people experience, but he is a little tired today, but that is probably an accumulation of all the chemo and stress of the entire experience. Burns has been so strong this whole week, and the weeks leading up to this. He has kept his normal positive attitude, even when times would get tough. I can not fathom staying positive, after what he has been through his whole life, but yet he does. He has an amazing inner strength that keeps him going, which I have always admired so much.

We finished the first transplant around 4:00 today. It took about 1 1/2 hrs. Burns joked that the actual transplant is the easy part! It goes by faster than a blood transfusion!! Our emotions were all over the place today. Honestly, there were tears shed. Some of anxiety, and frustration of having to go through this again. But mostly, there were tears of hope. Hope of Burns not having reactions. Hope of Burns not catching viruses. However most of all, hope of the graft working- and it will this time.

Burns and I thank you all so much for the continued support. All of the messages mean the world to us!

Laura

DOT -1

Hey it's John. We are back at it again here in Durham. I came up yesterday just in time to watch the leaders tee off at the Masters. Great fun watching Bubba pull off the unprobable win.

Eliza has been giving me my neupogen shots (to boost my cell count) since last Thursday. The first few were a little rough but we got the hang of it. Thx babe!

Today was my first day on the apheresis machine. 7 hrs later we had a large bag of stem cells that Burns will get tomorrow. He had his last round of chemo (radiation) this afternoon. He and Laura both look great and are nothing but positive.

Mom fixed us all a wonderful dinner and we are all hoping someone gets up and goes to bed so we can do so ourselves.

Thanks again for ALL the great emails and posts. Burns' will to live a longer life with Laura is so strong. I'm just lucky to be able to lend them a hand.

Good night!

2nd DOT -2. Happy Easter, Happy Masters and Happy last day of Chemo

Another successful day! Not much side effects from the chemo besides some stomach pains that were short lived. Today was the last day of chemo and tomorrow is the radiation piece. Then transplant day is Tuesday!

John made it up here fine and is doing good with his shots. He starts his collection in the morning at 8 and I do not have to go in till 1 because radiation is at 4:30.

We had a nice Easter dinner here with Mom, Dad, John, Laura and I. Some flank steak, pasta, and they all had a salad. (I skipped salad for veggie soup). It was something else cooking dinner through the excitement of the Masters! Who knows, maybe the masters has keep us feeling even better this go around.

My counts are still just below normal but are expected to fall fast over the next 5 days. So I am expecting my energy level to drop fast. During chemo they give you lots of steroids to help with the side effects. They also plan the best golf tournament of the year to help too, haha.

So we are about to hit the tough zone but it's nothing we cannot handle. John's here to what brothers dream they would do for each other. Laura's here in Sickness and in health doing everything to make this as easy as it can be and be the best support team. Mom and dad are coming back tomorrow to help with all the logistic's and trying to keep all of us comfortable. And me, I am ready to try and beat the heck out of this thing and get a graft to set in!

Thanks for everyone checking in. Happy Easter!!! Happy Easter!

2nd DOT -3

Another good day with the 3 doses of chemo. They give you lots of steroids during it, so that helps you feel much better and control the side effects. One strange thing is that the hiccups are bad. Seem peanut butter and a prescribed medicine help those. (Laura taught me the spoonful of peanut butter and they go away quick)

My counts are still up but should start diving soon:

Test---------------- Burns------- (Normal Range)
White Blood Count---- 2.7----(3.2-9.8) (this will go to 0)
Hemoglobin----------- 9.2----(13.7 - 17.3) (they try and keep it above 8.0)
Platelet---------------56----(150-450) (they try and keep it above 10) C
Creatinine------------1.6----(.6-1.3)

John is doing good and is headed to Durham tomorrow so he can have two days of collections. The shots have set in and he can really feel them working. Each day it will get worse but he is doing good.

This second go around has a different feel. We know where to go and what is going to happen, for now. I think the nurses like our question count down from 1.4 million questions to only about 100. I wish we could say we don't know a lot about this stuff but we do. Practise makes perfect.

The apartment is much nicer now with our couch and chairs. Tomorrow is the last day of chemo and then total body irradiation on Monday which is scheduled for 4:30 and might take an hour or so.

One thing is we are ready! Our spirites are up and we have gotten in a good routine to make the best out of it.

Your support is a MAJOR part of keeping us going everyday! Thanks!

DOT 2 -4

DOT 2 Day -5

Today was a good day with the chemo and no reactions so far. This week is also one of my favorites as it is "Master's Week!". I got to see a lot on my iPad through streaming video and that helped the time pass. Not much better than some Augusta National to pass the time! This week is master week with some chemo, not chemo with masters week. Masters wins!

John is doing well in Wilmington. He started his shots this morning with 2 shots in the morning and 2 in the afternoon. We thought it would be one, but they split them up in smaller doses so he needs two each time he gets a dose. Hopefully his pain will be manageable for the next few days.

They are doing two new things this go around. One is the addition of radiation to prepare for the transplant. Another is a replacement for my immunosuppressmet drug I take every day. I will now take two different ones and drop the cyclosporine. Prograf, twice a day,and cell cept, three times a day will be the drugs. Hopefully these will help the graft come in.

So tomorrow is day -4. Laura is doing good and we grilled a good hamburger out tonight. With the weather better, we hope to use the grill more.

Thanks for all the support! It really makes a huge difference!

Day before we start

Laura and I are here in Durham ready for "round 2". We got here about 12:30 and have been busy since then. I had a ct done and Laura started getting the apartment ready. We had our two chairs and couch delivered today and that is going to make all the difference in the world. The old rentals were just not that comfortable!

Below is the schedule for next few days. We are here and John is starting his shots in Wilmington and then heading up to Durham on Sunday.

Thursday 5th:
Burns: 3 types of chemo treatments
John: 2 nupegeon shots

Friday 6th:
Burns: 3 types of chemo treatments
John: 2 nupegeon shots

Saturday 7th:
Burns: 3 types of chemo treatments
John: 2 nupegeon shots

Sunday 8th:
Burns: 3 types of chemo treatments
John: 2 nupegeon shots and travel to Durham

Monday 9th:
Burns: radiation treatment and clinic visit
John: 1st day of stem cell collection and 2 nupegeon shots

Tuesday 10th:
Burns: transplant day!
John: second day of stem cell collection

Wednesday 11th:
Burns: rest of stem cell transplant

Leaving today was not fun, I cannot lie. But we are in good spirits and are ready to tackle this chemo again. Saying goodbye to the dogs was tough but they are in good hands with their grandparents. I cannot imagine the people who do this and have to say goodbye to their kids.

All the support we have gotten has been tremendous. We cannot thank you enough. Hopefully the next few days will go as well as it did the first time, with limited side effects from the chemo.

Thanks for checking in on us! God is good!

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

DOT +41

Today was a quick visit with only one antibiotic given. All my other electrolytes were good and in no need for supplements. Laura headed back to Gboro for the afternoon because her scar has been bothering her but she got some meds and a good report. Hopefully it will feel better tomorrow.

Yesterday, they sent off another graft study that is more detailed than the last study. I don't think they were real happy with the last results, so they wanted to see more details. Also, we are hoping for some improvement too. The results should be back next Monday.

I think my belly is starting to go down some since we stopped the anti-viral medicine! They did an abdominal ct scan last night that did not look too alarming. Today I feel a lot better than the last few and I really hope it stays like that.

Tomorrow we get our first day off! This means we can just hang out in the apartment and no clinic visit. It's been about 51+ days in a row of going to the clinic. Knowing my luck, I will be wide awake at 7 am since it is the one day we can sleep in. Hahaha... And I definitely know that laura will enjoy being glued to the today show!

Dad was here some today and we got out for some fresh air and a few walks around the apartment complex. Not too much more to report. I think this week we will be staying the same course and wait for the next round of graft results.

Thanks for all the cards, calls, text, and everything! It does not go unnoticed!

Burns

DOT +37 ...Some news with the graft

The results are in... Below is my best shot in explaining.  Some of this stuff can get pretty deep.  

There are two "lines" of stem cells.  Lymphoid and Myeloid stem cells.  They do the grafting study on both lines to see how much donor or host is in each.  The chart below shows the two lines and then what kind of cells they make.  So each line can have some donor and some host.  The Myeloid line makes the part that I have problems with, neutrophils.  

The test came back and there is 10% donor in the Lymphoid line and 0% donor in the Myeloid line.  Good news that there is some donor there!  But we were hoping for some donor in the Myeloid line where my defect is.  They were discussing doing another transplant if it came back with 0% in both lines, but with this 10% in one of the lines, there is something for them to work with.   

After the first test at day 12, there was 0% in both lines and now there is some in one, so we know things are improving, just very slow.  When we first heard 10% in only one line, we were really not sure what to think.  This proves that this is not a quick procedure and it requires extra long patience.  

There is no plan now but to just wait.  Dr. Chao is on a plane to China so they will be doing a lot of email this weekend and are hoping for a game plan early next week.   I spoke with Dr. Buckley this afternoon and she was encouraged and will be watching to see when the next line comes in and what they do to try and help that process.  

My labs are still low and I needed some magnesium today and might need some more blood this weekend.  Also, I think I am starting to retain fluids so they will need to keep an eye on that.  I am gaining some weight and one might think I might be having a baby soon!  haha.  My belly has grown but most of it has to be water weight because I am not eating that much.  (I am eating enough, just not that much to gain weight) 

Thanks for all the cards, thoughts, prayers and emails.  

God is good!

Test--------- Burns------- (Normal Range)
White Blood Count----2.8---(3.2-9.8)
Hemoglobin----8.4----(13.7 - 17.3) (they try and keep it above 8.0)
Platelet---- 49----(150-450) (they try and keep it above 10)
Creatinine-----1.9

DOT+36

Things are still steady with my counts, low but steady and not dropping too low. Laura is back in Durham and improving everyday! My mom has been here to help us the last few days and she is heading back tomorrow. We got some good meals!

I needed another blood transfusion today because my hemoglobin was 7.9. It been in the low 8's. I'm still on the medicine for the CMV virus but they checked my blood for it again this week and it has seem to already be gone. They said I should stay on it only once a day now. That good because that medicine was pretty hard on me and I should start to feel better.

Yesterday I got another nupegeon shot to boost my white blood count of 1.7. As you can see below it is now 6.3, so it worked like a charm. But if history repeats itself, it will drop fast again without the shots. But time should help with that.

Still waiting on the graft results which will be big news. After that, a better plan can be put into place.

Thanks for everyone who keeps reaching out to us. It overwhelming with all the support. In a great way!

God is good!


Test--------- Burns------- (Normal Range)
White Blood Count----6.3---(3.2-9.8)
Hemoglobin----7.9----(13.7 - 17.3) (they try and keep it above 8.0)
Platelet---- 49----(150-450) (they try and keep it above 10)
Creatinine-----1.6

DOT +32

Hey it's John.

Came up to hang out with Burns for a few days and relieve my parents. His numbers were about the same today and we are still playing the waiting game. Laura is recovering well and hopes to be back in a few days. I know Burns will be glad to see her! Spirits are fair to partly cloudy around here but that's to be expected. The days are long and it's no fun feeling bad. I hurt for him like you can only imagine. The support and encouragement remains tremendous and that really helps him during the tough times.

I just know some good news is right around the corner. If not, he'll do what he does best and find a way to persevere.

JB

P.S. Despite a really rough hour or two this afternoon we still found a way to laugh for a few minutes!

DOT +29

Laura did great today and is at home resting! She is in some expected pain but nothing some pain pills can't help with. Her doctor was great and she goes in for a follow up tomorrow. It was not easy being by the phone today.

The docs decided that a bone biopsy was not necessary for me so they will be just drawing labs tomorrow for the grafting study. That is a relief because that was not going to be fun! It should tell if all this has been a success or not. They estimate 7-10 days for the results. (that will be a long 10 days)

The new meds are making me pretty tired. Otherwise we are good. Mom is here with some food and we have been facetiming Laura this afternoon.

Thanks for all the prayers, text, emails, cards and thoughts!

DOT +28

The next 48 hours have a lot packed in them for the blackwell's. Laura heads in for her surgery at 5:30 am tomorrow and then Friday I get my bone biopsy. I'm confident Laura will be in good hands tomorrow in Gboro. Her leaving today was not fun for either of us!

Each week in the clinic, they do some test for virsus' that most people have in their body at very low levels but normal immune systems keeps them surpressed. When going thru a bone marrow transplant, they are know to surface and increase since the immune system is suppressed. One is CMV and I was positive for it this week, but just at or below the level they detect. So they are starting me on twice a day 2 hour iv infusions to treat for the virsus for 2 weeks then once a day for 2 additional weeks. The one bad side affect is that the virus can lower your white blood cell and stem cell count. So catching it early before the levels got high is a big thing because that could cause some problems with the stem cells grafting and producing white blood cells. This also could be an explanation to me having night sweats the last 3 or 4 nights. So we will meet with the home health care tomorrow to get all supplies to give the evening infusion at the apartment. Tonight's is done with a man purse that is running for 24 hours.

We were hoping to maybe start skipping some days at the clinic but that will not be the case for now. The medicine will be hard on my kidneys and deplete some electrolytes so I will be getting plenty of fluids and electrolyte supplements by iv with my medicine. But we are pros at this after the 2010 battle with my electrolytes.

I'm looking forward to hearing to good report of Laura's gallbladder removal tomorrow. Wish I could be there but I am sure she wishes the same for me.

All the cards, prayers and well wishes for both us have been amazing. It really helps keeping the spirits high!

Burns