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!