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

DOT +26

Labs were drawn today and most labs were stable except for the white blood count. It has dropped to 1.3. The docs are being very straightforward and saying they really do not know what is causing the drop. It could be the graft coming in, a virus, or something else. We are sticking with the idea that it is the graft!

They talked again about starting shots that will increase my WBC but they don't want it to skew my bone marrow biopsy on Friday. So for now, they are just letting it stay low. Once the results come back from the biopsy, (5-7 days) there can be a better plan in place.

Laura heads back wednesday for her gallbladder surgey. She should be back in time for the results of the biopsy. It's really going to stink having her in Gboro, but she should be feeling better after the surgery.

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


Test--------- Burns------- (Normal Range)
White Blood Count---- 1.3---(3.2-9.8)
Hemoglobin----8.8----(13.7 - 17.3) (they try and keep it above 8.0)
Platelet---- 95----(150-450) (they try and keep it above 10)
Creatinine-----1.7

DOT +24

Sorry for the lack of post lately. With all that has been going on, we now have another hurdle to jump. Laura has been having some abdominal pain so she went to the doc early this week and they did a ultrasound of her gallbladder and she now has to get that removed. The day surgery is scheduled for this Thursday in Greensboro. She should mostly recover in 4-5 days in Greensboro then hopefully be back to Durham. Again, not great timing but our wonderful parents are here to help as they have been from the beginning.

With me, headaches have been to focus lately. They have been hard to manage and the docs cannot seem to figure out what is causing them or a good solution for them. They are similar to migraines and dark quite places has been the best help for them. Today has been a good day with them!

My counts continue to stay the same or improve some. But we are not sure if the counts are from the graft or just old me, so it is hard to get excited. Last time we jumped the gun and thought the graft had come in but it had not. The next extensive test to see if the graft has come in will be day 30 and that will be a huge test to determine the success or failure of the transplant. So we are anxiously awaiting.

So the waiting game continues, both for me and Laura. This weekend we still go to the clinic but do not have to get labs done, which saves a ton of time! My counts have proven to be stable so all I do is switch out my man purse, which is 24 hour iv med, then head back to the apartment.

Thanks again for all the support!

Burns

Test--------- Burns------- (Normal Range)
White Blood Count---- 1.9---(3.2-9.8)
Hemoglobin---- 8.8----(13.7 - 17.3) (they try and keep it above 8.0)
Platelet---- 95----(150-450) (they try and keep it above 10)
Creatinine-----1.6

DOT +20

Labs are staying steady and we are still on a waiting game. Day 30 they test again to see if the graft has come in.

Some bad headaches have started the last two days that we think one the of the meds are causing, hopefully tomorrow they will give me some meds for them.

My aunt Caroline and old good friend reeves came by for visits today. Was great to see both of them!

Besides that, we are still positive and taking each day as it comes.

God is Good!

Burns

Test--------- Burns------- (Normal Range)
White Blood Count----1.7---(3.2-9.8)
Hemoglobin---- 8.6----(13.7 - 17.3) (they try and keep it above 8.0)
Platelet---- 65----(150-450) (they try and keep it above 10)
Creatinine-----1.8

DOT +19

Sorry for the missed post yesterday, we threw a massive super bowl party- two of our good friends from Greensboro drove up for dinner and watched the game! For us, that is a party!! We were too tired after the game to post afterwards, and headed to bed.

During the night Burns ran a low grade fever, not high enough to be alarmed, but high enough to make it uncomfortable for you to sleep. I guess you could say we started the day off on the wrong side of the bed. All day he has struggled with nausea and terrible headaches. The PA told him he could take some Tylenol before bed as long as he doesn't have a fever. Normally you can't take tylenol because it masks fevers, and fevers indicate infections. He has been having to take pain pills to dull the headaches, but Tylenol works better. We are hoping for more relief tonight. I came home for the night, so Derry is taking care of him, so of course he is in excellent hands!! Derry has always been there whenever we have needed her, which I greatly appreciate.

We have some news to report. They ran a test last week to determine whether any of the graft (John's cells) have set it. The clinic does not normally run this test until day 30, but since Burns numbers jumped up so high so quickly, they ran it early. It came back negative, which means none of John's cells have set up shop. This is not to say they won't, it just hasn't happened yet. Right now we are so grateful for all the doctors and staff at the clinic. It is obvious that everyone from Dr. Chao, to our favorite PAs, have been in deep conversation on the best action plan. They have decided to leave everything as is. Even though his white blood cells count is below 2, and normally they would give him a shot, they don't want to disturb anything. So basically it is a waiting game until day 30. So, what happens when we get the results back from that test? If the graft has set in be a marginal percentage that the doctors are satisified with, hallelujia! If not, more than likely, Burns will have to undergo a second transplant. Since his immunity is already down, he will not have to have as much chemo as last time. He will have one day of the same three as last time, but will also have a low dose of radiation. There was a very brief discussion whether to go to a bone marrow donor bank or not, but they quickly decided that John would be the best bet. He will have to go through the exact same procedure as last time. The doctors shot it to us straight. Of course they are hopeful that the graft will work, and everything will continue smoothly. But they did not lean towards one way or the other- remained neutral. So now, if you prayed before, we need you to step it up!! Burns is a strong man, and will not go down without a fight. And if he gets tired, he has all of us to help push him back up. My husband is a remarkable man, and has not wavered yet, and I don't expect him to! He will beat this!!

DOT +17

Today was a quite morning. My counts continued to drop today but they did not start the shots. They said they might give me one tomorrow for a boost of my WBC. It was 1.8 today, below the minimum of 2.0 they like. Not too much info except to continue to wait for the graft to come in and they gave us some more encouragement that there is still a lot to be done.

I did mention that my nose was a little stuffy a few points in the day and asked if i could use something. Well, what a reaction! Yes there is something BUT they gave me some nasal test and put me on contact isolation until the result are back for some form of virus. They mean business around here. So tomorrow we will be in a room and have to wear gowns, gloves and mask whenever we are outside our room. They really don't think it is anything but this is precaution. The results should be back Monday or Tuesday. At least we get a private room!

John came up for the night and we grilled some great steaks tonight! It's been good to see him and he gets to go see all the crew at the clinic tomorrow.

Not too much more to report. Hope all is well with everyone!

God is good!

PS. I think I have officially lost the battle with the hair. 90% gone. Will post some pics this week, looks pretty funny.

Test--------- Burns------- (Normal Range)
White Blood Count----1.8---(3.2-9.8)
Hemoglobin----8.7----(13.7 - 17.3) (they try and keep it above 8.0)
Platelet---- 40----(150-450) (they try and keep it above 10)
Creatinine-----1.7

DOT +16

Sorry we missed the post last night. It got late and we just did not feel that well.

Today we got about the same labs back. Stable is good for now. My creatinine is looking better because I am getting used to the drug they put me on.

One big thing we learned today was that most, if not all, of the white blood cells I have now are still coming from the host. So the graft has not come in yet. While that sounds like a huge downer, it may not be. For patients like me it can take longer for the graft to come in.

Most patients that come into this clinic are cancer patients (~98%). They come in with bone marrow that is already beat up pretty good from past chemo treatments. My bone marrow has not seen Chemo before so it still has a little fight in it before the graft can take over.

I spoke with Dr. Buckley today and she was still positive and I got the feeling this happened to most of her patients. So a lessoned I have learned in my life, if Dr. B has hope, YOU have hope!

With all this, it makes the waiting game longer. Something we can do with no problem! Keeping our eye on the prize.

Test--------- Burns------- (Normal Range)
White Blood Count---- 2.3---(3.2-9.8)
Hemoglobin---- 9.4----(13.7 - 17.3) (they try and keep it above 8.0)
Platelet---- 46----(150-450) (they try and keep it above 10)

Creatinine-----1.7

DOT +14

While the labs didn't come back with outstanding leaps forward, they were stable, which we were very pleased with. The doctors seemed encouraged that his blood work stayed the same over the night and did not drop. This is definitely a step in the right direction!! He is still tired some during the day, but that is nothing a quick nap can't fix. With his hemoglobin being on the lower side, it is to be expected.

Today we had tons of visitors! My cousin Emily drove over from Apex this morning and I took her in the clinic and she got to experience wearing the masks- forgot to get a picture... whoops! We went to the cutest coffee shop- can't remember the name, it was on 9th street! Highly recommend it if I could remember the name! My parents stopped by this afternoon and brought some chicken to grill! Everybody loves when dinner is made easier, even if you are at home, in whatever city you live in! Burns' cousin, Britton, just came for a quick visit tonight before dinner because she was in Durham for the night! She got to see our apartment and put her peepers on Burns! Everybody was so nice to come visit!

Probably the best part of Burns' day, was that he found out he can get take out from restaurants now! In the beginning of the transplant, they gave us a book, which said absolutely no meat from outside the house, and how it has to be cooked at a specific temperature. So we have been following it perfectly. We talked to the dietitian today, and she says as long as we order it special (no sauce, or no cheese- just to prove that they made it right then and there and hasn't been sitting there waiting to be served) or no fresh vegetables (lettuce, tomatoes, etc.). After his apt. today we went straight to the Chick Fil A and he ordered the #1 combo, super sized, with a coke zero, and ate every last bite!!! He loved it! I have a feeling there will be a Wendys, Bojangles, or Biscuitville run in my future in the next few days :)

All in all, a great day in Durham!

-Laura

Test--------- Burns------- (Normal Range)
White Blood Count---- 3.3---(3.2-9.8)
Hemoglobin---- 9.6----(13.7 - 17.3) (they try and keep it above 8.0)
Platelet---- 52----(150-450) (they try and keep it above 10)

Creatinine-----2.0