DOT +13

Things continued as expected today with all my counts dropping. We hope tomorrow we will see some leveling out of my WBC. Today is was back down to 3.1, which is in the low part of normal. My hemeglobin and platelets fell so my energy also decreased some. But a good nap helped! Right now it is a waiting game for my levels to stabilize. If not, they will restart the shots and those worked great before.

They did let us know that they sent my labs out for some further off site testing to see what % of my white blood cells are from the graft (johns stem cells) or the host ( my stem cells). So that will be very interesting to see on Monday when the results are expected to be back.

They told us at the beginning to expect a roller coaster and this is what they are talking about. The counts going up and down. But good thing is this is expected.

On a lighter note, I still have my hair! While it may be real short, it's still hair! I keep telling the nurses that I am not going to lose it, but all they do is chuckle and walk away. Haha...

Thanks for all the emails, text, comments, cards, and calls! It means the world!


Burns

Test--------- Burns------- (Normal Range)
White Blood Count---- 3.1---(3.2-9.8)
Hemoglobin---- 9.8----(13.7 - 17.3) (they try and keep it above 8.0)
Platelet---- 51----(150-450) (they try and keep it above 10)

DOT +12

Tonight's post is to say "I Love you!" and "Thank You" to my wonderful wife, Laura. She has been a trooper thru all this and I know it has not been easy. From my picky picky eating, pain in the middle of the night, running all the errands, staying by my side every second since it started! I know it is not fun but she has not complained a bit! Love you Laura and can't wait to get back to Gboro and our normal lives.

Today went well. My WBC stayed up without the shots with a 5.4! They were very pleased with that. For those that can remember, the spot on my nose that flared up before we started has come up again. Not a big deal, but means 24 hour iv meds so I now have the man purse back! ( it's a fanny pack that holds a pump and meds that is plugged in 24 hours).

Also, my creatinine was elevated again to a 2.1. That is caused by a drug i am on to prevent graft-versus-host disease. They will continue to monitor and change drugs if need be. They don't seem to worried about that either as there are other choices of drugs.

Otherwise we had a calm day. Got home from the clinic for a late lunch and a restful afternoon.


Test--------- Burns------- (Normal Range)
White Blood Count---- 5.4----(3.2-9.8) (this will go to 0)
Hemoglobin---- 10.3----(13.7 - 17.3) (they try and keep it above 8.0)
Platelet---- 65----(150-450) (they try and keep it above 10)

God is Good!!

DOT +11

A great report today! My white blood count surged to 7.4! The shots worked like a charm on me just like they did with John. They stopped the shots today so they say to expect a drop tomorrow which is normal.

Feeling much better today over the last few days. Buzzed hair feels pretty good until the chilly air hits it...wow never knew hair actually kept you warm! Mom and dad came for a nice visit today and got to eat some good q they brought.

Austin left today and it was a gret visit! Nothing beats good friends! Austin, if you ever need a fall back career, I would suggest looking into being a barber. You give one hell of a buzz cut. Love ya man!

Tomorrow morning many of my good friends in the Terminix family go for our annual convention (or vacation). Hope everyone has a blast and sorry the blackwell's cannot make it. Be sure to make next year a big one!!

They told us today we are way ahead of schedule. Thanks be to god! They started a new medicine today that might be hard on the kidneys but is designed to defend against graft-versus-host disease. So they will continue to watch my kidney functions closely. One study is called creatinine, which was 1.9 today a good bit above normal. So they gave me lots of fluids to flush the kidneys.

Thanks again for all the cards, messages, calls, text, and much needed prayers!

God is good!

Burns

Derry sent this to me.  It was the last time Burns had buzzed hair- I thought it was too cute not to post!

DOT +10 Bye Bye Hair..

Today was a big start to being bald.  Austin brought his clippers and we decided on a buzz cut #6! Below are some pics....

Great reports today and we hope for many more.  They will continue the shots until my wbc gets to 4 or above.  Its is a lot like revving up a boat engine, getting a big burst at first.  Once you slow the cell reproduction down the counts will go down a little.  But then they soon build up after that when the body is warmed up and back to making good cells.

Do I finally look Laura's age? Will I pass for buying John's Rum?

As you can see, we are trying to laugh as much as we can!  

God is Good!

DOT +10

Let me start off saying... LET'S PARTY!!! Got the blood work back and the white blood cell count was 3.3!!! The doctors said to be excited if it stayed the same over night, well Mr. Burns' cells decided to not only stay the same, but to triple!!! Words can't express how excited everybody is! We are definitely moving in a positive direction. Since his count is high, the PA thinks that he will be able to cut out the neupogin shots soon, which will alleviate all of the pain in his bones. The doctor was so encouraged that he has progressed this far so quickly, and was so pleased in the results. All in all, FANTASTIC report today!

Today one of the nicest people EVER, drove down and spent the day with me! Court Fields, I love you! I had so much fun with you today! Even if it did take us a little while to find a nail salon since we had to drive to several shopping centers, and you did have to put plastic bags over your toes to keep the polish from smearing (!!), you were so sweet to come see me, and I really appreciate it!

Last night Burns' buddy Austin Tyler drove in from Asheville- that is quite a hike. Burns has been looking forward to him coming all week. I must admit I was a little worried if he was up to it because he has been so weak the last few days, but he has recovered miraculously in the last 12 hours- he just needed some Austin in his life! They have the best relationship. Austin was one of the first people Burns called after he learned he was having this transplant, and I remember Burns calling him the night we got engaged to tell him the news. Even before I met Austin at the Kentucky Derby (random I know) I knew that he was a special person in Burns life. It's just great seeing the two of them together right now, going through one more experience together, that will probably bring them even closer. Neither of them are aware, but I emailed their mom's yesterday for some old pictures of the two of them! Hope they don't care!!!!!

Test--------- Burns------- (Normal Range) White Blood Count---- 3.3----(3.2-9.8) (this will go to 0) Hemoglobin---- 10.6----(13.7 - 17.3) (they try and keep it above 8.0) Platelet---- 59----(150-450) (they try and keep it above 10)

DOT+9

After kind of a rough night, we gladly welcomed tons of visitors today. John and Eliza were here when we woke up and even better, came with groceries!! They went to the UNC game last night and stayed the night to come see us. We loved visiting with them today- we're hoping since John's old cells saw him, they will be put in over-drive and work extra fast. Derry's sister Anne stopped by for a bit and got to see the clinic and our apartment. (thanks for the hat and earrings!!)

Burns is still in some pain, so we are trying to taking the pain med religiously, but in return, it is making him rather loopy. His balance and memory are a little off, but his positive attitude remains strong. All along his hemoglobin and platelets have been in a safe range. Every few days he has had to get either magnesium or fluid because his kidney levels were high. However, today we have good news to report- his white blood cell count was 1.0. While we immediately were super excited, the doctors told us to be "cautiously excited" because sometimes the numbers can fluctuate for a few days. However, if the count is 1.0 or higher tomorrow, then we are supposed to THROW A PARTY!!!!! So, keep your fingers crossed and pray that we get a good report tomorrow.

One of Burns' best friends since he can remember gets here tonight, and is staying the weekend! I'm sure we will have some more interesting posts once Austin and Burns get together!

Test--------- Burns------- (Normal Range)
White Blood Count---- 1.0----(3.2-9.8) (this will go to 0)
Hemoglobin---- 10.3----(13.7 - 17.3) (they try and keep it above 8.0)
Platelet---- 50----(150-450) (they try and keep it above 10)

DOT +8

"This to shall Pass... Soon we hope!"

Last night was kind of rough here in Durham. Burns woke up with rather intense pain in his legs and lower back, very similar to the pain John experienced when he received the neupogin shots. Since we can't take Tylenol at will, we had to call the nurse on call at the hospital, and she told us to take another Adavan. That, along with a relaxing heating blanket, eased the pain, so Burns could go back to sleep. I was left wide awake, so coffee was my best friend today :)

He awoke to more pain and when we arrived to the clinic, the doctor prescribed him some pain pills to help alleviate the pain while at home. All of his blood levels were stable, except that his kidney functions were elevated. He received some fluid, and told him to drink, drink, drink. Normally a Blackwell gets excited when told this, but when your body is beat up and all you want to do is sleep, it is hard to get down fluid. He is being a trooper though, and is doing his best to drink all he can- I encourage everyone to buy up some stocks in gatorade.

We are hoping for a better, easier night tonight! One way to ensure this would be a big victory by UNC!! While this might upset some of you State fans, and I'm risking starting a long argument and ugly comments below here... Go way back, and I mean WAY WAY WY back to your early childhood- duke is puke, wake is fake, nc state is the one i hate!! GO HEELS and GO BURNS!!!!!

-Laura

Test--------- Burns------- (Normal Range)
White Blood Count---- 0.3----(3.2-9.8) (this will go to 0)
Hemoglobin---- 9.6----(13.7 - 17.3) (they try and keep it above 8.0)
Platelet---- 49----(150-450) (they try and keep it above 10)

DOT +7

Well today we hit our first 'speed bump.' While his spirits are high, his poor body slowed down a bit today. He was very fatigued all day, and stayed in bed, until I lured him out of bed with the promise of a Tostinos pizza for dinner! I'm sure everybody remembers them from high school and college??!! He had more nausea today, but thankfully no vomiting occurred! He has perked up in the last little bit (I'm guessing it is the greasy goodness of a frozen pizza!). All of these symptoms are to be expected. The PA told us today, that days 7-10 can be the toughest physically. Knowing that, we are ready to tackle them head on. Plenty of good food and good company are coming the next few days which should keep our heads up! We greatly appreciate all the texts, emails, cards, comments, messages, etc. You have no idea how much it means to us knowing that everybody is cheering us on!

Laura

Test--------- Burns------- (Normal Range)
White Blood Count---- 0.1----(3.2-9.8) (this will go to 0)
Hemoglobin---- 9.6----(13.7 - 17.3) (they try and keep it above 8.0)
Platelet---- 53----(150-450) (they try and keep it above 10)

DOT +6

Today was another good and quite day.  We were in and out of the clinic with no additional meds needed.  My WBC was still rock bottom at .2.  It might take a week or so for it to start making any decent bounce.


Mom came today and had a great visit and brought some good food.  Our big adventure was to take a walk to the dumpster with the trash!  Shows how much I am getting out these days, haha... But it was nice to see some sun today!


Then Gracie (my sister in law) came for dinner tonight.  She has not had the privilege of being in the clinic with the mask, so we had some fun and she wore one around the apartment.  Being a good sport, she did and gave laura and I a laugh....


Nothing to report on the hair.  Still holding on to every day we can...

Everyone always asks if they should smile in a pic with the mask...haha

Test--------- Burns------- (Normal Range)
White Blood Count---- 0.2----(3.2-9.8)   (this will go to 0)
Hemoglobin---- 9.8----(13.7 - 17.3)  (they try and keep it above 8.0)
Platelet---- 48----(150-450)         (they try and keep it above 10)

DOT +5

Today we had several things happen.  First, my White Blood Cell Count has bottomed out to .1.  This means I basically have no white blood cells.  Kind of scary with lots of hand washing!  Second, I started my neupogen shots today.  300 mg once a day.  These are the same ones john took but I think his dose was 700 mg twice a day.  So a lot less and I should not have the side effects he did.  These shots should help my white blood count bounce back.  


And third.....Boredom! Boredom has set in and that is a GOOD thing!  In my life, I have had a lot of times where I am interesting and things are moving fast in the hospital.  Being exciting to the docs and med students my friend is not a good thing.  So things are going as planned and Laura and I are doing a lot of TV watching.  Susan and Hardee came to visit today and Mom and Gracie are coming tomorrow.  Mom is bring her italian chicken which laura and I love! 


There is still some debate about when to buzz my hair.  My good friend Austin is coming this Friday and that might be our big Friday night entertainment.  Buzzing my hair!  Hope it last till then...


It still amazes me with all the love and support people have expressed!  Thanks so much.  The blog has been fun and something to look forward to.  


So now we wait for my white blood cell count to rise!  Everyday I look around the clinic and see God's work and it is amazing... 


God is Good! 


Test--------- Burns------- (Normal Range)
White Blood Count---- 0.1----(3.2-9.8)   (this will go to 0)
Hemoglobin---- 9.6----(13.7 - 17.3)  (they try and keep it above 8.0)
Platelet---- 48----(150-450)         (they try and keep it above 10)

DOT +4

Four days after the transplant and things are going great! Today we had an appointment at the clinic at 9:30 and got my labs drawn.  They were almost identical to yesterday's, which is a good thing.  No electrolytes or medicines were needed so we got to go back to the apartment.  


Tomorrow we start the neupogen shots that John got.  (much lower doses than he got)  These shots "jump start" the stem cells in the bone marrow to producing white blood cells in the blood stream.  My white blood cells were all killed by the chemo and Johns stem cells have already made it to my bone marrow.  So the shots will be the first boost of the healthy stem cells to produce good white blood cells in my bloodstream.  Crazy stuff! 


We are still on medicines to try and keep the nausea at bay and they have been successful.  It comes every once and a while, but nothing bad.  The chemo should cause my hair to fall out soon.  So Laura and I have been planning when we should go ahead and buzz my hair.  They say that it is easier if you buzz it so large clumps don't come out.  I think that will happen this week.  (we will be sure to post some pics)


Its cold here!!  We just facetimed Bailey and hope to do the same with Rip dog today.  (we miss the dogs!)


Thanks again for all the support!  We continue to get wonderful texts and emails.  It definitely helps the spirits to stay high!  


God is Good! 




Test--------- Burns------- (Normal Range)
White Blood Count---- 0.2----(3.2-9.8)   (this will go to 0)
Hemoglobin---- 9.3----(13.7 - 17.3)  (they try and keep it above 8.0)
Platelet---- 40----(150-450)         (they try and keep it above 10)

It's time for Mom to post...

Dear Family and Friends,
All the Blackwell family feels so overwhelmed and blessed with what has happened over the past few weeks. We could not imagine going through this without the amazing support of our very dear family and friends. Having this “blog” has helped all of us, especially Burns, John, Laura and Eliza - it has also freed up my emailing and texting time!!
Let me count our BLESSINGS … that BURNS was healthy enough to go through this transplant process and that Dr. Buckley made it happen so quickly … that JOHN was a PERFECT match and so proud to give this wonderful gift to his brother … that our wonderful LAURA is always there to give such loving support to Burns, happily looking after his every need … that ELIZA was with us and by John’s side for the two days of collecting stem cells … that HARDEN “MY ROCK” who has and will always be there for all of us and has seen us all through many difficult times and has also made sure that we have had just as many FUN times and LAUGHS together. We pray daily for all the doctors and nurses at ABMT at Duke. xo Derry

John received this quote as he was about to enter this process …
“Help your brother’s boat across and your own will reach the shore” Amen!!

DOT +2

Well today marked the first 'normal' day around here.  No chemo, or transplants.  We started to settle into our routine.  We showed up at the center, expecting to be there just an hour, but after they drew some labs, we found out that Burns' hemiglobin was down a bit, so he received a blood transfusion.  All routine, nothing major, or alarming.  While he is starting to feel more fatigued, his spirits are still up.  We have shared many laughs today.  Everyday on the way to the center, we pass a golf course, today Burns commented how he wanted to try out his new cells and play 9 holes! (John- he's expecting to gain some of your driving distance!!).  My favorite part personally, was when the nurse was drawing blood, and told Burns to take off his hat.  Instead, he turned it around and wore it backwards- if you know Burns, and I'm if you are reading this, you all do, you know he does not wear his hats backwards for two reasons. 1-He thinks they look stupid. 2- Harden would have killed him growing up.   I texted Harden the picture, and he agreed, that this time was the one exception.   My mom drove up and brought us her chicken pot pie, and my friends from high school can attest, that is is darn good, so we will eat well tonight!

ps- John you will love this- we bought an Apple TV, and Burns just figured out to stream widespread panic concerts...  these few months just got longer for me!!!!

-Laura



Test--------- Burns------- (Normal Range)
White Blood Count---- 0.3----(3.2-9.8)   (this will go to 0)
Hemiglobin---- 7.9----(13.7 - 17.3)  (they try and keep it above 8.0)
Platelet---- 35----(150-450)         (they try and keep it above 10)

15,000,000!!!! DOT +1

The Dr's would have been happy with 10 million but Burns successfully received 15 million healthy stem cells over the last two days!  I'm already back in Wilmington and I think I teared up every 8.7 miles on I-40 reflecting on the whole thing.  I never thought I would have to say this in my lifetime Burns but we ROCKED that bone marrow transplant!  You need to write a book and title it "How to kick chemo's ass".  I am so proud of you and so glad it was I who could lend a hand (or 15mm stem cells).  I know the waiting game is just starting for you and Laura but getting off to such a good start should give you some good momentum.  Remember all the things we talked about and most importantly keep laughing like we did EVERY day.  Now it wouldn't be a blog post for me if I didn't make a reference to my drinking habits so here we go;  The nurse told me this morning that it might be smart to not drink for a while.  I had to get her to define "a while" b/c I don't want to attempt raising kids sober like I did grilling out sober.  You know I'm kidding.  I'd do it all over again for you tomorrow.  Love you man.


JB

Day of transplant +1

Below post from Harden Blackwell:

We have been asked many times over the last several weeks how do you feel as a parent going through this transplant. I have had many people then say things like I know you are excited, scared and anxious. There is no question all three of these wordsapply. Another that comes to mind is fortunate. We have been fortunate over the years to have Duke Hospital nearby and fortunate to have the resources to provide excellent health care for Burns. There are many many people in this world who have neither.

Even though Burns has had a chronic illness for 34 years we are still more fortunate than most. God has been good to the Blackwell’s.

Duke is a great hospital and the bone marrow doctors and nurses could not be nicer. The same can be said for all the folks in the Children’s Hospital that have looked after Burns for the last 32 years. As much as Duke Hospital has done for Burns none of this would have been possible without Dr. Rebecca Buckley. She has been Burns primary doctor since he was two years old. She is the one who has given Burns the quality of life he hasenjoyed, she is the one who kept him alive in 2010, she is the one who got John’s blood typed and found it was a perfect match and she is the one who arranged the bone marrow transplant. We are most fortunate to have Dr. Buckley.

It is said that if a couple have a child with a serious illnesses itcan drive them apart or closer together. I am fortunate that it drove Derry and I closer together. I believe we have worked well as a team over these years and I am the fortunate one to have Derry as my lifelong partner. Derry, I love you and John and Burns are fortunate to have you as their mother.

We thought going into this John’s part would be getting a couple of shots and giving some blood for a couple of hours. Boy, were we wrong. The shots you have read about caused John much more discomfort than we ever thought. Over the years I have had to help Burns get out of bed many times but never have I had to do so for John until these last two days. It’s a very strangefeeling seeing the “well” one struggling to walk to the bathroom, difficulty walking in general and so much overall uncomfortable. This process was difficult for John and I know Burns realized this as well.

After the transplant was over, Eliza had left to go back to Wilmington to get their kids and Laura had gone to get the car to pick up Burns out front. Derry was walking down the hall followed by Burns and John. I was in the rear. Watching your two children, thirty something young men, walking like old men, holding on to the handrails, sedated, and having difficultyreaching the car, I realized how I really felt. The word is proud. Proud that one family could do what it takes to help each other,proud we could face problems now and in the future and deal with them, proud of Eliza and Laura, and proud of the family Derry and I have. I am proud that John is giving Burns hope for a healthier life. I am proud of what great strength and courageBurns has shown over the years. You have seen the word love in this blog many times and I am proud of that. I love you all. God has been good to the Blackwell’s.

Day of Transplant - cont.

Everything went as smooth as it could today!  I got 10 Million stem cells from John in about an hour and half  with no reactions!  John again was on the machine and they predict another 5 Million stem cells ready for me to receive tomorrow.  That's well above the recommended amount of stem cells to infuse, so the docs were very pleased.  Way to go John!!


With all the blood moving around and medicines being infused, there are some tired puppies around the apartment tonight.  Mom and Laura are here making sure John and I are comfortable. Tomorrow I start again for a smaller infusion of stem cells and they will continue to watch my blood counts.  Below are some updated labs from today.  


Test--------- Burns------- (Normal Range)
White Blood Count---- 0.4----(3.2-9.8)   (this will go to 0)
Hemiglobin---- 8.6----(13.7 - 17.3)  (they try and keep it above 8.0)
Platelet---- 44----(150-450)         (they try and keep it above 10)


They expect the labs to continue to fall, so we are continuing to be careful with what I eat and many hand washings. 


Thanks for all the support and prayers today!!  We will try and give you some more detailed next steps tomorrow.  Too tired tonight but the next 10 to 30 days are crucial for the graft to come in and start producing healthily cells.


God is Good!


Burns

The Good Stuff!!

Day of Transplant

Today is a day that is hard to express in words.  Since I was 2, I have fought CGD with the understanding that I would live my entire life with it.  My Mom and Dad never let it slow us down growing up and they also made sure I had the best health care possible.  Mom and Dad built a special bond with a special person who has been an inspiration, Doctor, and many other things to me; Dr. Rebecca Buckley.  Many of you have heard of Dr. B , but she is one amazing person that kept me going to where I am today.  You can bet that we email daily during all this and she is watching the labs and medicines like a hawk.

Today I am receiving my brother John's stems cells that will soon replace my compromised immune system.  Since the day Dr. Buckley called me about John being a perfect match, I never doubted he would do what he has done this last week.  He has been a trooper and his process was more than what I expected.  John, you know I love you and when this is all done, there will be more fun times ahead.  My guess is one will be near some warm blue water and another near the front row at a Panic show!  And then rest assured, I will more than happy to give those cells as many rounds of golf as they want!

This process will take some time for the transformation from my immune system to John's healthy immune system.  Laura, as she has done since day one without any question, will be right by me in Durham being the best caregiver one could ask for.  Many of the days ahead will be like watching a slow clock tick waiting on lab results and tweaks to make the process be more successful.  We will live carefully trying to avoid a infection during this time of transparency with my weaken immune system.  No doubt, we will find fun things to do and soon be back in Greensboro back to our normal lives.

Laura, you have given up so much because of my illness from a delayed honeymoon, many trips to Duke, being proposed to from a guy with a pic line, and many nights where I had to take it easy because I was not feeling well.  2010 was a tough health year for me, but 2012 will be a new start for us without CGD hanging over our head.  I love you for your patience and looking past CGD at me as a person!  Soon CGD will be in the past! Love you Laura!

I hope my parents can soon post on this blog because I can only imagine what all this means to them.  My parents took me to Duke more Thursdays than not to see Dr. Buckley and keep me healthy and living.  Most of the visit were me and my mom growing up (unless she had a hair cut and then dad stepped up, haha)   I can only imagine the emotions when you learned of CGD and now the reverse of those feelings that it can be cured.  You have given up a lot and always made the right calls with my health.  From knowing when to let me stay on the basketball court or to pull me out and send me straight to Duke.  Your parental instincts have always amazed me and continue to this day.  I love you Mom and Dad!!!

The absolutely amazing support from everyone around has been incredible.  All the emails, Facebook messages, comments, cards, and most importantly prayers, makes all of us feel so loved and keeps the spirits high.  I think the hits on the blog are now over 4,000.  And that means a lot!

So here is to a new Birthday, January 18, 2012!  My appointment is at 10:30 am...

Burns

DOT 1- Burns' big day tomorrow

It is hard to believe that almost a year ago, I wrote this excerpt for the Duke Children's Newsletter. At this point, Burns was as healthy as he had been in years, and we were content with what we had and had no idea of what would be occurring a year from then.

"One of the first things I grew to love about Burns was his amazing strength. He tackles everything in life whole-heartedly whether it is work, life, or his recent battle with CGD. When I first learned of his illness, I did not know what to expect- I had never heard of CGD. Thanks to his patience and the kindness of all the staff at Duke Children's Hospital, I was taught about the immune deficiency which consumed our lives for the past year. While dealing with his illness did take up the majority of our time together, we did not let it shape our lives. We made it our top priority to live a 'normal' life, even with Burns having a PIC line. He proposed to me in March 2010 at his parent's beach house. I have never been more surprised or excited in my entire life! We had the most amazing wedding this past September that most people can only dream of. Most people would let a PIC line slow them down- not Burns. We danced the entire night with our friends and family and the fact that he was ill did not even enter into our minds. I am so thankful to have him in my life and glad to finally call him my husband. We are looking forward to starting our own family one day and know that even though Burns might have a terrible illness, it will not become the foundation of our life. Burns and I learned over this past year that anything is possible, no matter how strong your immunity is! "

Tomorrow he is receiving the greatest gift possible, from one of the closest people in his life, his brother John. As you know, John has undergone his own difficult procedure the past few days to donate his stem cells to give to Burns to treat his bone marrow, and eventually cure him of his disease. In just a few months, he will no longer be inflicted with CGD! That is so hard to fathom. No more pills, pic lines, late night emails to doctors, monthly check-ups, etc. As you can imagine, this is an extremely emotional time for all of us Blackwells, and also for everyone who knows Burns.

Burns and I will continue to live in Durham for the next few months for check-ups and visits to monitor his blood levels and to make sure there are no infections lurking out there! We can't thank everyone enough for the kind notes, emails, thoughts, and prayers. It is easier going through a difficult time, knowing you have a strong support system!

-Laura

Dot -1 day of johns collection

Hi eliza here... There are some moments in life that you know will never leave you. This is one of those moments. I sit here next to John while the blood flows from one arm through the machine that is pulling out the stemcells and platelets separately and then putting the blood back into his other arm. This is the process called "apheresis" and it's going to take about 6 hrs today to provide the necessary stemcell amounts burns will need to start the transplant process tomorrow. We know now that this will be a two day process. John will have to get another neupogen shot this afternoon and tomorrow morning before he begins the apheresis process again.  This is not as easy as it sounds.  Getting the blood to flow can be tricky and the whole process makes you weak and very tired. John is being a trooper though and getting lots of good drugs. Widespread Panic has never sounded so good! Burns is doing well today too and is getting his last bag of cempath today. It is just amazing to us all how well burns is fairing considering 4+ days of chemo! Superman has nothing on him but we already knew that. Don't get me wrong this process has not been without some drama and tears but it's journey that I am thrilled to be a part of. Its truly like a movie- and we will indeed have our happy ending! After tomorrow burns will now have a b+ blood type. The same as johns. I love too that it's "be positive" - it describes both the Blackwell boys to a t! Thanks as always for the prayers, notes and kind deeds done by all involved...you have all been as much a part of this process as I have. Blessings to you all from the whole Blackwell clan! Until tommorrow...

DOT -1 (collection day)

Dear Burns, Ever since you called me to tell me I was a perfect match I have been waiting for this day. I know I am primed and ready b/c I think I just felt a white blood cell pop out of my ear.  Before we get started I thought I might warn you about a few things. If you think your craving for golf is strong now just wait till you get about 15 million of my white blood cells.  I think they are actually all going to be labeled "Titleist".  Don't fight this new urge for golf as these guys are used to about 90 rounds per year. Now, let's talk a little about Mount Gay Rum. Right after golf they enjoy a tall glass of mount gay with a splash of soda and tonic. You'll thank me for this one!  All kidding aside you have endured more pain in your life than any man should ever have to. We are in really good hands over at Duke and they are going to make damn sure this thing works. Your strength has been incredible and it's going to take you right through recovery.  Now let's go over there today and tomorrow take care of some business!  I love you,  Your brother 

DOT -2

Only two more days until the big day! John did better today with his shots by staying ahead of the side effects with some pain medicine. I had my last day of two types of chemos and one more large dose tomorrow.

Laura, John, and I were at the clinic early to get the day started. Mom soon was there and things went pretty smooth. I got some expected nausea today but they are keeping me on 24 hour meds to keep it at bay. My energy level is declining by the day but that is expected.

Susan and Hardee came for a visit and Eliza came up for the night to be with John during his collection tomorrow. They will give him another shot in the morning and then start the 6 hour process hoping to get 10 to 15 million stem cells!!

My counts are dropping, below is a chart:

Test---- Burns---- Normal
White Blood Count---- 2.0---- (3.2-9.8)
Hemiglobin---- 9.9---- (13.7 - 17.3)
Platelet---- 49---- (150-450)

Thanks for all the thoughts and prayers! God is Good!

Burns

Check back for some pics tomorrow!

A little technical info.

Although it's classified as a bone marrow transplant we are technically doing a peripheral blood stem cell transplant. This should give you a better idea of what's going on:

How are PBSCs obtained for transplantation?

The stem cells used in PBSCT come from the bloodstream of a matched donor. A process called apheresis or leukapheresis is used to obtain PBSCs for transplantation. For 4 or 5 days before apheresis, the donor may be given a medication to increase the number of stem cells released into the bloodstream. In apheresis, blood is removed through a large vein in the arm or a central venous catheter (a flexible tube that is placed in a large vein in the neck, chest, or groin area). The blood goes through a machine that removes the stem cells. The blood is then returned to the donor and the collected cells are stored. Apheresis typically takes 4 to 6 hours. The stem cells are then frozen until they are given to the recipient.

How does the patient receive the stem cells during the transplant?

After being treated with high-dose chemotherapy drugs and/or radiation, the patient receives the stem cells through an intravenous (IV) line just like a blood transfusion. This part of the transplant takes 1 to 5 hours.

What happens after the stem cells have been transplanted to the patient?

After entering the bloodstream, the stem cells travel to the bone marrow, where they begin to produce new white blood cells, red blood cells, and platelets in a process known as “engraftment.” Engraftment usually occurs within about 2 to 4 weeks after transplantation. Doctors monitor it by checking blood counts on a frequent basis. Doctors evaluate the results of various blood tests to confirm that new blood cells are being produced.

DOT -3 (cont.)

It's John posting from Burns' IPad. Not a bad day but a very interesting day. While Burns was doing great with his chemo, out of the blue I had a reaction to my 1:45 neupogen shot. It's hard to explain the feeling, sort of like my body is in major overdrive. A heavy dose of Vicodin helped after about an hour and we are back at "home". I think it scared my parents and I thank both of them for being there this afternoon. Most importantly Burns did really well! His WBC count is down to 2.3 and the nurses are very pleased with his progress. He's definitely tired and the meds are helping with his nausea. Laura's Mom came over today and it was good seeing her. We are all pretty whipped so it will be a short evening for this crew. We knew things were going to get tougher but it's going to have to hit us harder than that to knock us down. I'm leaning on Burns and Laura's strength and they have plenty to go around. Thx again for all the good vibes you guys are sending us. We are getting close.

Eliza is coming up tomorrow. Can't wait to see you babe.

JB

-3

I thought I might explain the whole "negative" number concept. All the days leading up to the transplant are negative numbers. Day '0' is the day of the actual transplant. All positive numbers, are days following the transplant. Just thought this might explain a little confusion, because I have had a few people ask!

Last night could not have gone smoother! Burns had no nausea, and everyone got a great night sleep and are ready to tackle whatever they have in store for us today! We will have the same 3 chemo drugs as yesterday, but since he handled them so well yesterday, we have high hopes for tonight! John has two more shots today, but he has been tolerating them well.

-Laura

DOT -4

We are back at the apartment and today went well. (let's keep our fingers crossed it continues that way). No reaction to any of the meds today! They are great about giving me preventitive meds. They said some chills could be expected tonight.

My appetite is good but I am being very cautions. (Only want to enjoy everything one time, haha.) Laura, John, and I are here watching football then grilled some burgers (well done that is). I can tell now all the meds are starting to work. My strength has dropped a good bit from last night.

A few more days of chemo then the big day comes! John seems to doing well with some bone pain soon after the shots and then it goes away some.

This whole process is just amazing to see. It blows my mind everything I think that I will soon have johns immune system! God is Good!

Thanks for all the well wishs and prayers!

Prep for Durham

So we have known John was a perfect match since the day of the Club's Christmas Party- needless to say, we partied extra hard that night, paying for it the next morning!! We knew they were a perfect fit for a bone marrow, but had no idea things would move to rapidly. One day we were enjoying a quiet Saturday at home, and then the next day, it was full steam ahead to Durham. We frantically drove around Durham, trying to find a suitable apartment and a reputable company to rent furniture from. When that was settled, I started packing, packing, packing- everything from clothes and shoes, to kitchen gadgets to supplement what the company was giving us, to pictures to make our apartment feel more like home. I have had this stuffed bunny since I was literally 1 day old, that is basically my security blanket. Since we can't have the dogs here and bunny probably has all sorts of bacteria and is so old that he would deteriorate in the wash, I needed something to go to, so last Thursday before we came down, I went to Toys and Company and bought a stuffed cow in memory of my Pa Paw that passed away a few months ago, who was a cattle farmer. I definitely got a few looks in the store!!!

I'm embarrassed to say that 'I neglected to clean my house' and that was the last thing on my mind, so thankfully, Derry has it covered this weekend! We will be in Durham the next few months, but I will come home periodically to check the mail, etc.

So far, things have gone wonderfully. Our apartment has turned out so nice- they upgraded us to one with granite counter tops, which we all know Kirkwood doesn't have!! The doctors and nurses have been amazing and so accommodating with all of our questions, so things are going as smoothly as they could possibly could go! John is handling is shots like a champ, and so far Burns is feeling great with his chemo.

Thanks for all of your thoughts and concern!

-Laura

Day -4 (that's what they call it around here)

John again. After a rocking Friday night we are all settled in at the ABMT center. Burns had a good night and he looks ready to take on the day. Nurse Amy just finished plugging him up. I've already had my shot and I can feel the bone pain that they told me to be expect. The pain is actually a good sign that I'm brewing up some good cells! Bring it on.

I might add that I had a new experience last night. Sober outdoor grilling. I don't recommend it.

Talk to you in a bit.

Date of Transplant -5

Hey it's John.

Things went well today.  Burns had his first light dose of Chemo and I had my first neupogen shots.  Obviously the chemo assists with bringing down Burns' immune system and the neupogen shots boost my white blood cell count. The nurse said my white blood cell count today was 6k and they are trying to get it to 60k by collection day.  Conversely, Burns' white blood cell count will go to zero (omg).

So far Burns feels good and my shots were a breeze.   The Dr's and staff are fantastic, they make you feel like you are the only patient on the hall.  Mom and Laura were great were and were with us all day.   We are all back at the apartment resting now.  Heavier dose of chemo tomorrow for Burns (Campath) which may prove to be a little more challenging.

Thanks for all the well wishes.  Everyone have a great weekend.  Drink one for us!!!

JB  

Day before we start

Well, here we go.  Tomorrow is the big day to start Chemo for me and John starts his shots.  I have had all my pre-checkups, John has had all of his.  Laura and I have been in Durham most of the week working hard to get settled in.  I had a pimple go bad with an infection and that has caused us to be here this week for IV meds.  Just normal CGD stuff that I always deal with.  Another reassurance that we are doing the right thing…

Our apartment is nice.  Laura has brought some pictures and stuff to make it feel more like home.  We have a full kitchen, which we will have to put to good use since I will be on a restricted diet.  (no eating out for a while, boooo)  The Adult Bone Marrow Clinic is very nice and all the people seem great.  It is a little weird learning new faces (I was at the Children’s hospital for 32 years so I knew everyone). 

Here is the schedule:

         Friday:       Burns starts Chemo (2 Kinds and then Campath)

                           John starts his shots to boost his cell count

         Sat:            Same as above

         Sun:           Same as above

         Mon:          Same as above

         Tues:          Burns last day of Chemo

                           John starts stem cell collection

         Wed:          The big day!!  Burns receives Johns stem cells!

                           John will do a second collection if needed

Thurs:        Burns will receive second dose of stem cells if needed

         Fri ++++   Daily visits to the clinic… 

We have received many wonderful emails and prayers from everyone.  Thanks so much!!  

Below are some cool pics of the new Blackwell gear for 2012!