An artist's journal.
Here you'll find my paintings and musings, where the featured subjects could likely cover just about anything.
The last 4+ years I've been caring for my best buddy B during his courageous fight to live through cancer and it's complications. I'm tickled to report, he's getting better and I'm finding small bits of painting time again.

Looking forward to a daily celebration of life's gifts by using the brightest, happiest colors in the box!

Visitors looking for 'B's Journey', click here.

B's Journey-Chapter Two-Septmber 2012 through April 2013

B's Journey is a sub-page of my Artblog [launched in 2008], so, by default, the margins are shared by both. This is why you see my art related info on both sides of this journal. This bothers me, as it's not my intent to promote my art here on B's Journey pages. I am sorry for the distractions, but I am unable to hide the margins. Thanks for stopping in to see how B is doing in his courageous journey.

Hi friends... I've started this journal to help keep each of you up to date on how B is doing in his latest battle with Non-Hodgkins lymphoma

Everyday, this disease seems to present a new adventure. Sometimes, so much happens in a week, or even a day, it's mind boggling.

So many of you care so much about B and want to be kept up to date. To help with this, I've started this journal, a chronicle of the whole journey thus far. Each of you can decide for yourself how much (or little) you want to know.

Drop in at your convenience to catch up. I'll provide a link to this journal occasionally through Facebook and
email. For those of you not on one of those lists, bookmark this page and check back from time to time. To be added a list, email me with your contact info.
I'll be keeping these updates as current as possible. 

This journal will have the most recent date at the top.   
To read each Chapter fully, from the beginning, scroll to the very bottom, start there, then work your way up. 

I thought I'd add this brief summary for those of you who don't want to read the daily rundowns I post:

B's Non-Hodgkins Lymphoma (in his lung) is in remission! This was confirmed by PET scan on Dec 12th, 2012.
His debilitating peripheral neuropathy continues to affect his hands, feet and legs, making 6 string guitar playing impossible and walking difficult. He can still play his U-Bass though and enjoys getting together and jamming with friends as often as possible.

Currently, he has MyeloDysplastic Syndrome, a disease of the bone marrow (sometimes caused by chemotherapy). It affects all three blood components for him, hemoglobin, platelets and white blood cells.
He is completely blood transfusion dependent.
He needs multiple platelet transfusions and red blood cell transfusions to maintain his blood counts. His bone marrow doesn't make any platelets at all, requiring 3-4 units a week.
His hemoglobin production is weak, so he gets about 4-6 units of packed red cells a month.
His White Blood Count and Neutrophils also run low, so he gets multiple Neupogen shots each week to try to keep those numbers in a somewhat normal zone.

MyeloDysplastic Syndrome symptom management (4-5 transfusions weekly) is the path he's been on since Spring 2012.

Then, on Oct 25th, we met a Bone Marrow Transplant specialist, Dr. Jeffrey Schriber, to just discuss the possibility of a transplant, not really believing it would be a viable choice for B because of it's riskiness for folks over 60.
The news this Doc delivered was frightening.
While a Bone Marrow Transplant has a 35-40% mortality rate for someone like B, Dr. Schriber believes that just staying on the supportive transfusion care path has a 100% chance of mortality. 
Sooner than later. Mostly because of the low platelets. The Doc believes B is on borrowed time and a fatal bleed, more than likely in the brain, is inevitable. He also thinks that if a bleed doesn't get him, an uncontrollable infection is another probable culprit for B's demise.

So, B has begun the process of becoming a Bone Marrow Transplant recipient.
Details of this process will be found in the daily updates below.
While this latest news is devastating, his spirit remains strong.
He continues to deal with setbacks with grace, dignity and determination.
And he continues to be an amazing inspiration to all who know and love him.

Hope this helps keep you all up to date. Thanks for your interest and please feel free to leave comments by email, or through Facebook. I'll show all your comments to B.

Also, if you are between the ages of 18-44, please consider becoming a bone marrow donor. It takes just a simple cheek swab to get on the National Registry and you could potentially SAVE SOMEONE'S LIFE. Please take a few minutes of your time to become registered. A swab kit will be sent directly to you, so registering is a do-at-home- process. Details can be found at

The following chapter (Chapter Two) covers Sept 2012 through April 2013.
Scroll down a bit to Feb 2013 to follow the Bone Marrow Transplant portion of B's journey.
Day Zero was February 13th, 2013.
Size issues with Blogger have necessitated breaking B's Journey into Chapters. 
You will be able to find the latest updates beginning with April 18th, 2013 on the newly launched Chapter Three.
To read his entire journey, beginning with his Non-Hodgkins Lymphoma diagnosis, you can start with Chapter One.

For the somewhat daily updates, here we go:
(The daily lab reports are for our reference.)

APRIL 15, 2013-Monday
Today's  numbers: Clinic 
Hemoglobin- 10.4 (increase) 
Platelets- 143.0  (decrease)
Neutrophils- 4.70 (decrease) 
White Blood Count- 8.4 (unchanged)
Creatinine- 3.70 (decrease- 13 days post dialysis)
BUN- 58 (decrease-13 days post dialysis)
Potassium- 3.8 (decrease-13 days post dialysis) 
Weight- 149.5 (decrease)
Day +61.

His labs were still quite good today, with all the renal numbers going in the right direction without dialysis. The Doc is very happy she made the decision to hold off on the dialysis and see what B's kidney numbers would do without it.
While the renal numbers are still not in the normal range, he's not getting worse.
He lost more weight, despite high calorie meals and trips to the Physical Therapist. I'm hoping it was more water weight he lost, not body mass. I think he probably has a few more water pounds to lose, since his feet and ankles are still swollen. We'll remain patient and diligent and keep trying to add good weight these next months.
Once again, because of how well he's doing, he will get several days off between clinic visits. 
We are at day +61 of the critical '100 day' post Bone Marrow Transplant time period.
This is the time period where typically the odds are higher that something could go wrong. The time period where the odds are higher he could develop Graft vs. Host disease (GVH), or get an infection or a virus because of his reduce immune system. Something that might be laying dormant in him could wake up and start taking advantage of this reduced immunity. Once he passes the Day +100 mark, while he still could develop any of these complications at any time, the odds start dropping that it will happen. 
Today we learned that the Docs are watching something called CMV (cytomegalovirus) which may be showing up in B's blood. This virus is very dangerous, and once was a common cause of post transplant fatalities. New medicines and monitoring practices have reduced deaths by this virus, but it's still a definite bad guy. We do not want B to get this.
They are not alarmed at the level of CMV they are seeing in his blood, but noted that it is something they will be keeping a close eye on.
This news has made me a bit nervous, but I will try to keep my optimistic cap on that this CMV virus will remain dormant and not give B any issues.
There really are so many things that could go wrong with a Bone Marrow Transplant, but worrying about the 'what ifs' will only wear us out, and put a damper on the good times we are having right now.
So we'll worry if we need to, when or if the time comes, and in the meantime keep the faith that it will all work out.

APRIL 12-Friday
Today's  numbers: Clinic 
Hemoglobin- 10.1 (increase) 
Platelets- 175.0  (increase)
Neutrophils- 5.06 (increase) 
White Blood Count- 8.4 (increase)
Creatinine- 4.57 (decrease-10 days post dialysis)
BUN- 59 (increase-10 days post dialysis)
Potassium- 4.2 (increase-10 days post dialysis) 
Weight- 154.5 (decrease)
T shot
Day +58.

After the Doc got today's lab results she came into our room, smiling and giggling a bit and jokingly asked B, "What are you doing in my clinic?"
Because most of his labs were really good.
His platelets were an astounding 175!
And, he's still not showing any signs of the dreaded Graft vs. Host disease either (knock wood).
His renal numbers are still poor, but even without dialysis for 10 days, they have remained stable. He's also not added any new water weight, so she was happy enough with these results to continue the wait-and-see approach regarding dialysis.
"Keep doing what you're doing, and, take the weekend off."

APRIL 11-Thursday-
We got another day off from clinic. 
As his condition improves we are told that,  at some point, he may only need to be seen once a week, then once every two weeks, etc, etc, until he's finally leading a somewhat normal life again.
He will always be a Bone Marrow Transplant patient, and with that comes a whole set of rules that, for the rest of his life, will need to be followed to insure his post transplant health remains stable. But dang, we are getting small glimpses of light at the end of the tunnel.
In the meantime, we'll celebrate these occasional days off.
Another milestone achieved this week is he's allowed to (cautiously) eat meals at restaurants again.
Because of neutropenic issues, restaurant eating has been a strict no-no since the transplant. He's only been allowed home cooked meals prepared under careful conditions. 
There are a slew of rules we must adhere to with restaurant eating (no fresh anything, no food under heat lamps, no beverages from fountain machines, no fast food joints, etc) but he can finally go out and get the steak and fries he's been craving.
We all know how fattening restaurant food can be, so maybe this will give him a few high caloric meals that could help add some bulk to his new skinny frame.
Days off and restaurants again. More baby steps.

APRIL 10-Wednesday

Today's numbers: Clinic
Hemoglobin- (.8 (increase)
Platelets- 141.0 (increase)
Neutrophils- 3.76 (decrease)
White Blood Count-7.4 (decrease)
Creatinine- 4.67 (increase-8 days post dialysis)
BUN- 55 (increase-8 days post dialysis)

Potassium- 4.0 (decrease-8 days post dialysis) 

Weight- 156.5 (decrease)

Day +56.

B's platelets, for the first time in 18 months, are in the normal range!
Without the need for transfusion.
His hemoglobin is still below normal but we learned today that it may be for some time to come. It takes the hemoglobin longer to recover, but someday, the Docs are optimistic it too will make it into the normal range. (14.0-18.0 is normal for hemoglobin)
Bone Marrow Transplant's effects on the human body are many and varied.
Another thing I learned today was transplant's effect on body weight.
As B was losing all that water weight (46 lbs in two weeks), a downright skinny Mr. B  was revealed. 
No surprise really after the strict renal and neutropenic dietary restrictions he was on for almost 6 weeks. Between what the chemo had done to his tastebuds and the bland unappetizing gruel that was available to him the month he spent in hospital, he hardly ate. And, he was losing muscle mass as well, spending a lot of time in bed because the extreme extra water weight he was carrying was causing shortness of breath when he tried to walk.
So yep, he's a skinny boy now. Almost scary skinny to me. I've been feeding him high calorie meals along with high calorie/protein smoothies in between meals to try to beef him up. But he's still not gained any weight.
This was worrying me so I mentioned it at today's clinic and was told this will probably be the norm. Because of transplant and the energy it burns rebuilding B's blood and marrow, he won't be putting on any fat based weight for quite some time.
The only way to really get him to really beef up a bit will be through Physical Therapy, where he may be able to start rebuilding the muscle mass he's lost these last few months. 
As it was explained to me today, I should lower my expectations for him to gain any significant good weight for at least a year. He's gonna be skinny. 
But, it's important to not let him get much skinnier.
It seems this weight thing is going to be an ongoing, tricky issue.
We don't want water weight, we do want muscle mass weight. 
We will continue to watch him carefully for water weight gain, which could indicate increased kidney failure, while continuing to feed him high calorie meals coupled with Physical Therapy to help him maintain/gain as much good weight as possible.
Surprisingly and thankfully, it's somewhat easy to identify water weight gain, so once our efforts to, Pump-B-Up, start having success, we shouldn't be too confused by which kind of weight he may be putting on.
I've taken to using my best Dana Carvey/Kevin Nealon, Hans and Franz, Saturday Night live accent on B when I tell him it's time to do his Physical Therapy.
Come on B, it's time to Pump...You Up.

APRIL 8-Monday-
Today's  numbers: Clinic
Hemoglobin- 9.4 (decrease) 
Platelets- 136.0  (increase)
Neutrophils- 4.49 (increase) 
White Blood Count- 7.6 (increase)
Creatinine- 4.33 (decrease-6 days post dialysis)
BUN- 50 (increase-6 days post dialysis)
Potassium- 4.1 (unchanged-6 days post dialysis) 
Day +54.

Based on today's labs and weight (no water gain), we will remain in wait-and-see mode with regards to dialysis.
B's feeling better, and so far he has no secondary infection from his run in with Parainfluenza 3.
We have been told we get tomorrow off from clinic/hospital, so for the first time in months we won't be going in for treatment or labs or something.
That's a good thing.

APRIL 7-Sunday-
Today's  numbers: Hosp
Hemoglobin- 10.2 (increase) 

Platelets- 122.0  (increase)
Neutrophils- 3.90 (increase) 
White Blood Count- 7.3 (increase)
Creatinine- 4.43 (increase-5 days post dialysis)
BUN- 46 (increase-5 days post dialysis)
Potassium- 4.1 (decrease-5 days post dialysis) 
Weight- 158.8 (decrease)
Day +53.

The good news.
B's feeling better. He's getting through the flu relatively unscathed with no secondary infection and he's improving day by day.
And his blood counts are exceptional!
His hemoglobin has broken 10 and his platelets are at 122!!! A (low) normal platelet count is 140 and he's darn near there! This part of the transplant is going just the way we had hoped.
Now the bad news.
His renal numbers are still not good.
But, it's been 5 days since his last dialysis session and  he's been on antibiotics non-stop (which are tough on the kidneys) so disappointing renal numbers are to be somewhat expected.
We were hoping his renal numbers would stay stable while he's been off dialysis, but not so far.
But, today the Transplant Doc indicated that she may want to go back to a wait-and-see approach as far as dialysis goes. She said that the Renal Docs had originally wanted to start dialysis, not necessarily based on the Creatinine and BUN numbers, but because of the massive amount of water volume that B was carrying (it was dangerous and debilitating and needed to be reduced) and B's dangerously high Potassium levels.
Right now, B's water weight is stable. He hasn't gained any weight while off dialysis. Granted, he's been on diuretics these five days, but the diuretics are working, which means his kidneys are trying to work, even if they're not firing on all cylinders.
And B's Potassium levels are remaining stable and in the normal range without dialysis.
So, we'll see. We'll wait and see.

APRIL 6-Saturday- 
Day +52.
B had more IV antibiotics at hospital today.
Day by day, he's getting better from the flu. He's got quite a cough at night, but is doing okay. No secondary infection. And X-rays show his lungs remain clear.
The Docs want to wait until Monday to decide if he should have the central dialysis line reinstalled and start dialysis again.
They haven't wanted to do this while he's been sick with the flu. I think they'd still like to try and not restart dialysis again if possible, but we'll see how the next week plays out with his renal labs and weight.

APRIL 5-Friday- 
Today's  numbers: Clinic
Hemoglobin- 9.6 (decrease) 
Platelets- 112.0  (increase)
Neutrophils- 2.96 (decrease) 
White Blood Count- 6.6 (increase)
Creatinine- 3.80 (increase-3 days post dialysis)
BUN- 33 (increase-3 days post dialysis)
Potassium- 4.6 (increase-3 days post dialysis)

Day +51.

St. Anthony is awesome! And so is the 'find my phone' app. (Thanks son.)
Because of this app I was able to convince the folks at clinic this morning to keep looking for the phone. Although it couldn't be seen, it's signal kept saying "I am here". 
Yesterday (I think because of satellite triangulation), the signal kept jumping between 4 spots on the hospital campus (thus my exhausting hour and a half afternoon search chasing the signal). 
Today, the signal had finally narrowed down to one distinct location and it was the room B was in at clinic on Wednesday. But there was still no phone to be found or heard (when we asked it to send us a 'find me' signal). 
I kept showing my phone, with the locator map showing B's phone was there, to whoever would look at it.
Our transplant coordinator, Jocelyn, was also convinced it had to be there, so she kept looking. She finally found it in a laundry bin just around the corner from B's room. Apparently the phone had been in the bedding where B had been on Wednesday, and when the sheets were stripped, the phone had gone into the laundry bin.
It's 'find me' signal couldn't be heard because in the middle of this laundry bin, it was muffled by many sheets and blankets, and in clinic, beeps and alert tones (on infusion pumps) are everyday sounds.
We can't thank Jocelyn enough for not giving up the search, going through that bin and finding the phone before it went to that big commercial laundry in the sky.

APRIL 4-Thursday- 
Day +50.

Yesterday B apparently lost his cell phone.
We didn't discover it until we came home this afternoon.
A whole day later. We're a bit scared that it could be lost for good.
Our son helped us install an app called 'find my phone' on my cell phone to try to help us locate it.
I spent an hour and a half this afternoon walking the entire hospital and clinic campus (multiple times) trying to zero in on B's phone, whose signal said it was somewhere there. Maybe it had fallen out of B's pocket while he was in the wheelchair on his way to surgery, or it could be in the surgery area or the clinic or???
I could not find it. We sent it signals to send out alert tones and I could not hear it.
So, I finally gave up, said a prayer to St. Anthony and went home. 
Darn it.
It turns out that both B and I have Parainfluenza 3. 
To say we are sick and tired is an understatement. I've been wearing a mask non-stop since I suspected (on Monday) that I was getting sick. It's hard to breathe behind that mask and that, as well as the flu, made today's search for the phone almost physically impossible. I am burnt toast. Defeated burnt toast.
While we didn't find B's phone, thankfully today's physical exam shows B is weathering the flu as well as can be expected. Unfortunately, he must continue antibiotics for now just to be sure the flu doesn't cause a secondary infection (like pneumonia). Continued antibiotics will be tough on his kidneys, but they must be done.
Everyday is a new adventure. Here's hoping tomorrow, we're both feeling better and we find the missing phone.

APRIL 3-Wednesday- 
Today's  numbers: Clinic
Creatinine- 2.26 (decrease- 1 day post dialysis)
BUN- 17 (decrease-1 day post dialysis)
Potassium- 4.2 (increase-1 day post dialysis) 
Weight- 159.2
Day +49.

Yesterday afternoon B started running a fever again so we headed back to clinic for more IV antibiotics.
Today, it was decided that the central dialysis line could be the culprit so B had surgery this afternoon to remove it.
The plan is to reinstall a new dialysis line on Friday, depending on the results of Friday morning renal labs. They are having B skip this Thursday's dialysis session and will look at his renal numbers closely Friday. Those numbers will help make a decision about whether to reinstall the central line Friday afternoon and restart dialysis Saturday. If his Creatinine, BUN numbers and weight stay relatively stable, they may wait 'til Monday (and Monday's lab results) to decide if B needs to continue dialysis.
Yesterday, B's renal Doc told the Transplant Docs she thinks he'll need 3-6 months of dialysis, but the Transplant Docs want to see what his renal numbers will do these next few days without dialysis. 
They really don't like B having this second central line because of his fragile immune system. If there's any way to avoid reinstalling it (and discontinuing dialysis) they want to give it a try. Antibiotics are hard on the kidneys and they don't want to be caught in a cycle of infection-in-the-dialysis-line-needing-antibiotics-that-causes-damage-to-his-kidneys-so-he-needs-a-dialysis-line-that-causes-an-infection-yada-yada-yada.
We are in limbo land. We go where we're told, doing what's necessary, never really  knowing what the next day will look like. 
Staying flexible and focused on the goal.
We are going to get B well. One day at a time.
B's a trooper. A human pin-cushion. He regularly endures a vast array of pokes and prods and tests of all kinds. Stick a brush up my nose until my eyes water and sting? Okay. Surgery again? Okay. Need more blood? Okay. Dialysis 3 times a week that I know is gonna make me feel sick? Okay. And so on.
He's had so many central lines placed (and removed), he's on a first name basis with the crew in the surgery center. He continues to have a wonderful spirit (especially when he's feeling okay) and never complains.
He doesn't like to be called superman anymore, but I'm still gonna call him just that.

APRIL 2-Tuesday-
Weight- pre dialysis-162.3  post dialysis-159.2
Day +48.

As is usually the case, this morning's dialysis session (#9) has kicked B's bum. He's sleeping and hopefully will feel better after a good nap.
I started having a dry cough yesterday afternoon, and since it feels a bit different than the normal allergy cough that I'm used to, I masked up as a precaution.
I'm also hand washing like crazy.
I don't feel sick at all, but don't want to take a chance of giving B something else to deal with.

APRIL 1-Monday- 
Today's  numbers: Clinic
Hemoglobin- 9.9 (decrease) 
Platelets- 102.0  (increase)
Neutrophils- 3.62 (decrease) 
White Blood Count- 6.1 (decrease)
Creatinine- 2.58 (increase-2 days post dialysis)
BUN- 25 (increase-2 days post dialysis)
Potassium- 3.7 (decrease-2 days post dialysis) 
Weight- 160.6
Day +47.

Today was day 5 of antibiotics to address the unknown cause of last week's fever.
None of the cultures grew any thing in particular, so we don't know why he had a fever. They say that sometimes happens. That sometimes, you just don't know what the cause is. Thankfully though, whatever it was, responded to the antibiotics and he's feeling much better, with relatively normal temps.
Also, today's labs showed that B's platelets have broken the 100 mark! That's a miracle for sure.
Yesterday marked 5 weeks since B's needed a platelet transfusion and today marks 6 weeks since he's needed a packed red cell (hemoglobin) transfusion.
His weight seems to be remaining stable, but we don't know what it would be doing if he weren't getting dialysis regularly. 
And his renal lab numbers still creep up day by day post-dialysis, so for the time being, it appears he will need to continue getting somewhat regular dialysis to keep both his weight and renal numbers stable.
Right now it seems he's traded regular transfusion sessions for regular dialysis sessions.
But there's still hope the dialysis will be temporary, and he will come out of this transplant process someday scheduling tee times and jam sessions, not clinic sessions.

MARCH 31-Easter Sunday-
Day +46.

No labs today, just another 3 hour round of IV antibiotics as an outpatient at hospital.
I did ignore his diet's sodium restrictions today and made him ham for dinner. It was yummy.
Happy Easter.

MARCH 30-Saturday-
Day +45

Dialysis today, session #8 so far.
I didn't get his pre and post dialysis weights.
Some days are better than others for statistics gathering.
We went straight from dialysis to hospital for round 3 of antibiotics. He's feeling much better today than he did on Thursday after dialysis, so the meds seem to be working. 

MARCH 29-Friday- 
Day +44.

B's fever stayed below 100 so we didn't need to go to hospital during the night.
We returned to clinic today for another round of IV antibiotics.
I think they'd like him to do at least 5 days of antibiotics, so tomorrow and Sunday, he'll have to go to the hospital as an outpatient to get those administered (clinic is closed). 
He also needs to keep his dialysis appointment tomorrow as well.
It'll be a busy Easter weekend, but not with any of the usual Easter festivities.

MARCH 28-Thursday- 
Today's  numbers: Clinic
Hemoglobin- 10.1 (increase) 
Platelets- 92.0  (decrease)
Neutrophils- 4.86 (increase) 
White Blood Count- 7.0
Creatinine- 1.49 (decrease-post dialysis today)
BUN- 11 (decrease-post dialysis today)
Potassium- 3.8 (decrease-post dialysis today) 
Weight- pre dialysis-162.9  post dialysis-160.2
Day +43.

B had his second outpatient dialysis session today. (His 7th so far.)
Dialysis makes B feel yukky for hours after it's completed. It saps his strength and leaves him feeling chilled and sick. This yukkiness usually goes away after about 4 hours (he sleeps through most of it) and when he wakes up, he feels much better.
Today, post dialysis, he felt worse than usual. More chilled. Unable to sleep. So, I took his temp and sure enough, he had a fever. 
His first post transplant fever.
I immediately called the Transplant Clinic. As caregivers, we are instructed to call if  he gets any fever over 100.4.
With his suppressed immune system it's imperative he's seen right away to begin diagnosis of what may be causing the fever. 
They examined him carefully from head to toe to see if there were any visual signs of the dreaded Graft vs. Host Disease. Thankfully no visible signs were found.
They took blood cultures, a chest x-ray and a urinalysis. 
The chest x-ray was unchanged from the last one he'd had, which was a good sign that it's probably not lung related. It will take a few days to see if anything grows from the blood cultures and the urinalysis.
Broad spectrum antibiotics via IV were started and will continue for the next few days while we wait for the lab results. We should be able to manage this fever and the IV antibiotic treatments as an outpatient unless he takes a turn and starts to feel much worse or his fever climbs higher than 102. If these things happen, he will be readmitted to hospital.
So, tonight, we'll wait and see, keeping a close watch of how he's feeling and where his fever goes.
Unfortunately, we've been told these new antibiotics he's now on are hard on the kidneys, so he may take a few steps backwards from a renal standpoint because of this.
I sure hope not, dang it. I sure hope not.
He needs victories, not setbacks.

MARCH 26-Tuesday- 
Today's  numbers:Dialysis Clinic
Hemoglobin- 10.0
Platelets- 96.0  
Neutrophils-  NR 
White Blood Count- 7.0
Creatinine- NR
BUN- 44 (increase)
Potassium- 3.9 (increase) 
Weight- pre dialysis-164.2  post dialysis-159.4
Day +41.

So look at that weight! That's less than his pre-transplant weight of 162! He's lost almost all of that yukky water weight that was literally weighing him down. 
46 lbs in two weeks!
He did have dialysis today and I guess they have him scheduled for another few rounds this week, but I'm hoping he won't need much more. Come on kidneys!
They certainly won't need to use the dialysis to get the water volume down much anymore, but if his Creatinine and BUN numbers continue to be uncooperative, he'll need dialysis to cleanse his blood.
We have to be at the dialysis clinic really really early in the morning. It was quite the task to get my musician and this groupie out the door at zero dark five thirty.
We are not morning people. 
If he continues needing dialysis, I will definitely try to get us scheduled with later appointments for the duration. Yikes. 

MARCH 25-Monday-
Today's  numbers:Clinic
Hemoglobin- NR
Platelets- NR  
Neutrophils- NR   
White Blood Count- NR 
Creatinine- 2.52 (decrease)
BUN- 38 (increase)
Potassium- 3.8 (decrease) yippee!
Weight-165.8 (almost 40 lbs lost since March 11th!!)

We went to the BMT clinic today to get B's renal labs done. They did not run blood labs today since he's been doing so well with his platelets and such lately.
When the Doc came to give us the renal lab results, she was practically giddy.
B's Creatinine and BUN numbers, while still higher than normal, had not climbed much at all since last dialysis. And this was with 2 whole days in between dialysis sessions! 
And his Potassium, once a number so high that it was giving us the jitters a few weeks ago, is now in the normal range!
He continues to lose weight as well, even on non dialysis days. 
She cautiously said she thinks B's kidneys are starting to wake up!!!!
He may need a few more sessions of dialysis to keep everything stable, but we very well may get another miracle here soon.

MARCH 23-Saturday-
Day + 38.

Our first night home was wonderful with no major health issues at all.
B got to participate in the music retreat and got to jam for over 4 hours with the guys.
I say the guys 'cause this yearly music retreat has historically been a 'guys only' gig for the 20 years they've been meeting (yep, they've been doing this yearly thing for that long) and I was told I was the first girl to get a glimpse of the goings on.
Music was what was going on and I feel privileged to have been welcomed and included on their final day of merriment.
But, shhhhhh, I was never there.
B had a blast. He didn't get overly tired and seems fine this evening.

MARCH 22-Friday-
Today's numbers:Hosp

Hemoglobin- 9.1 (decrease, no transfusion)
Platelets- 72.0 (increase, no transfusion) 
Neutrophils- 4.61 (decrease) 
White Blood Count- 5.8 (decrease)
Creatinine- 2.80 (increase)
BUN- 34 (increase)
Potassium-4.5 (increase)

Weight- 4am-171
Day +37.

B had another dialysis session today. Number 5 so far. I forgot to get the lab report so I don't remember where exactly his renal numbers were, but they were poor enough to warrant another round. (I'll get the labs on Monday and record the numbers then).
Part of my forgetfulness was based on getting things done to......wait for it.....
... let us go home again!
Yep, he got released from the hospital around 4pm ish.
Just in time too, because B got invited to sit in on the final day of a week long music fest with a wonderful group of musicians (12 of them) from all over the country who gather once a year just to make and record music all week.
His invite is for tomorrow and we weren't sure he'd get sprung from the hospital in time, but it's looking like he'll get to go.
He's excited and so am I 'cause we all know how much music feeds his soul and how much it plays a huge part in helping him heal. 
Thanks Tom (and guys) for including him. You're all angels.

MARCH 21- Thursday-
Today's numbers:Hosp
Hemoglobin- 9.5 (increase, no transfusion)
Platelets- 65.0 (increase, no transfusion) 
Neutrophils- 4.66 (increase) 
White Blood Count- 6.0 (increase)
Creatinine- 2.30 (decrease)
BUN- 25 (decrease)
Potassium-4.3 (increase)
Weight- Hosp-  4am-173.1  4pm-173.1

This morning's surgery to put in the permanent dialysis central line went off without a hitch. He did fine and feels good.
But the plan to let B go home today after surgery got derailed by backstage insurance issues regarding what umbrella in-patient vs out-patient dialysis falls under and who (transplant vs. regular insurance) will pay.
The powers that be are working on this glitch and the plan is to go home tomorrow instead if all the necessary paperwork gets signed and approved in a timely way. And if they can get B scheduled for a spot on Monday or Tuesday at an out-patient clinic. Then we can go home tomorrow. If.
Thankfully, we continue to wear our stay-flexible-and-roll-with-it caps, so we aren't terribly disappointed we have to stay another night.
We've got March Madness to entertain us and the hospital's tele is adequate.
Go Cats!

MARCH 20- Wednesday-
Today's numbers:Hosp
Hemoglobin- 8.8 (decrease, no transfusion)
Platelets- 58.0 (decrease, no transfusion)
Neutrophils- 4.23 (increase) 
White Blood Count- 5.6 (increase)
Creatinine- 3.23 (increase)
BUN- 39 (increase)
Potassium-4.1 (decrease)
Weight- Hosp-  pre dialysis-176.5  post dialysis- 173.2

This morning's labs show B's Creatinine and BUN levels went in the wrong direction without dialysis yesterday so he had his fourth dialysis session today.
And the Docs decided on a new plan today.
Tomorrow they will remove the temporary dialysis central line and install a permanent one. This doesn't necessarily mean he will be on dialysis permanently, but he will need it longer than the temporary central line provided with it's maximum lifespan of 7-10 days. That line would have needed to be removed by this coming Monday anyway, and since it appears he will be needing dialysis for the foreseeable future, they decided to make the switch tomorrow.
They think he could go home again tomorrow after the surgery and and start doing dialysis as an outpatient. I think they plan on a 2 or 3 day stretch at some point without dialysis to gauge the kidney's function on their own. But, instead of spending the next week or two in hospital figuring out what the kidneys are doing, they'd like him to go home and do this as an outpatient.
We've been in hospital for 10 days so far this stretch, so it will be nice to go home.
Especially since B is feeling so much better than he was the last time we were home. He may actually get to enjoy it this time. Yep. 

MARCH 19- Tuesday-
Today's numbers:Hosp
Hemoglobin- 9.7 (increase, no transfusion)
Platelets- 59.0 (increase, no transfusion) 
Neutrophils- 3.80 (decrease) 
White Blood Count- 5.2 (increase)
Creatinine- 2.57 (decrease)
BUN- 30 (decrease)
Potassium-4.2 (unchanged)
Weight- Hosp-  4am-177.4  4pm- 177.9

Today's good renal labs reflect yesterday's dialysis treatment.
It would be great if we could get a set of labs going in the right direction without dialysis, but so far, that hasn't happened.
We are learning so much about this strange little set of organs. First, they are incredibly difficult to predict. And they are smart. If the body undergoes an acute event, the kidneys will sacrifice themselves to let the heart and brain have the blood and energies needed to survive the event. In most cases, when the event has resolved, they will once again start taking their fair share of blood and energy from the body, and will recover. 
B's experts are baffled by what his kidneys are doing.
They believe that this is an 'acute' kidney event, which means that something (in this case, strong chemo) has caused B's kidneys to stop working well. And they're leaning towards this 'acute' kidney event reversing, but they can't be sure.
They tell us all 'chronic' (end stage kidney failure) usually begins with an 'acute' event, so they can't predict what category B will end up in. Acute kidney failure that eventually reverses, or chronic kidney failure, that could require dialysis for perhaps the rest of B's life. 
The Docs have come up with a short term tentative plan to try to gauge if B's kidneys will start a recovery on their own. They will give him a few more dialysis sessions over the next few days, then give him a few consecutive days off to see how his kidneys do on their own. Of course, if the numbers start to drastically go in the wrong direction, or he starts to retain fluid again, they will dialyze once again. The hope is that, this week, his kidneys will show signs of life, the temporary central line will be removed and B will be able to start enjoying post-transplant recovery and good health.
On the good news front, his platelets and hemoglobin went up today, so the predicted dip was a short one, lasting about 4 days. And it didn't require any transfusions.
B also started physical therapy today, and was given freedom to roam the hospital patios (which are many and beautiful). Granted, he's the masked man (I think he needs a cool Zorro mask), but he can now actually leave the ultra sterile Bone Marrow Transplant unit of the hospital.
We even went outside, and it was wonderful.
Baby steps.

MARCH 18- Monday-
Today's numbers:Hosp
Hemoglobin- 9.0 (unchanged, no transfusion)
Platelets- 49 (increase, no transfusion) 
Neutrophils- 4.16 (increase) 
White Blood Count- 5.6 (increase)
Creatinine- 3.50 (increase)
BUN- 50 (increase)
Potassium- 4.2 (increase)
Weight-Hosp-  pre dialysis-183.2  post dialysis- 177.2

Yep. Without dialysis, B's renal labs crept up again. Up is a bad thing.
But, his weight didn't climb too much overnight and that's a good thing.
The Docs went ahead and ordered a dialysis session (#3 so far) for this morning and, along with the regular blood cleansing stuff dialysis does, they were able to remove another 2800 cc's of fluid from B.
His weight this afternoon is 177.2!  28 lbs less than he weighed a week ago!
While it remains to be seen if dialysis will ultimately help his kidneys recover, it is certainly helping his edema and making him FEEL much better.
The Docs can't predict if B will need long or short term dialysis. But dialysis is doable, and B's okay with doing it for as long as it takes.

MARCH 17- Sunday-
Today's numbers:Hosp
Hemoglobin- 9.0 (decrease, no transfusion)
Platelets- 47 (decrease, no transfusion) 
Neutrophils- no report 
White Blood Count- 4.6 (decrease)
Creatinine- 2.85 (decrease)
BUN- 43 (decrease)
Potassium-4.0 (decrease)
Weight-Hosp-  4am-182.2  4pm- 184.0

B's blood counts continue to drop. But, the Doc's say that this is perfectly normal at this time post transplant. We will see rises and dips along the way. Curious to see how low the red count and platelets will go before they start to rise again. Hopefully he won't get low enough to need any transfusions.

Today's renal labs were good. A reflection of yesterday's successful dialysis session. (Decreases in Creatinine, BUN and Potassium levels are a good thing.)
But, without dialysis today, B's gained 2.8 lbs. Darn it.
I'm guessing that's not a good kidney sign. I would bet that tomorrow morning's renal labs, with no dialysis today, will also reflect that B's kidney's continue to struggle. His 4am weigh-in will also probably show more weight gain.
But, it's early yet, and the Docs have said that it could take a few weeks for the dialysis to take the stress off B's kidneys in the hope that they will eventually rebound from the hit they took from the extremely high dose chemotherapy B underwent prior to transplant.
I've been an optimist, hoping his kidney's will recover, sooner than later, but I can see that patience will be watchword here.
Be patient and believe he will be okay.
Much easier said than done.

MARCH 16- Saturday-
Today's numbers:Hosp
Hemoglobin- 9.2 (decrease, no transfusion)
Platelets- 51 (decrease, no transfusion) 
Neutrophils- 3.70 (decrease)
White Blood Count- 5.3 (increase)
Creatinine- 3.38 (decrease)
BUN- 66 (decrease)
Potassium-4.3 (decrease)
Weight-Hosp-  pre dialysis-187.6   post dialysis-181.2  :)

This morning, bright and early, B had his second dialysis session.
Today's goal was to remove 3000 cc's of fluid along with the usual dialysis blood cleansing.
They were successful reaching that goal without issues and B's weight once again showed improvement. His renal labs this morning were much better, reflecting the success of yesterday's dialysis session. I'm sure tomorrow's renal labs will also be better after today's session.
Dialysis seems to be working to improve B's overall condition for now. He was languishing prior to dialysis with all the weight and toxins he was carrying, and is feeling a bit better this evening. He's definitely more mobile now that he's 14 lbs lighter from these two days of dialysis treatments.
The plan is to go without dialysis tomorrow to see how his kidneys behave on their own. Tomorrow's renal labs will reflect today's dialysis, and they will probably show improvement, so it will be Monday's labs that will tell how his kidneys are behaving without dialysis.
While it may take a few weeks or so, the Docs really think his kidneys will rebound and that longterm dialysis will not be needed. In fact, the central line that was installed yesterday is only a temporary one. So if his kidneys indeed continue to fail, and longterm dialysis will be needed, he will need a more permanent line. The crew that installed this temporary line have said that there will be no problems if that's the case, that they checked out B's chest just in case and don't foresee any issues if a permanent line is needed.
I truly hope dialysis will only be a temporary, but am so pleased that it's relieving his current discomfort.

MARCH 15- Friday-
Today's numbers:Hosp
Hemoglobin- 9.3 (decrease, no transfusion)
Platelets- 64 (decrease, no transfusion) 
Neutrophils- 3.79 (decrease)
White Blood Count- 5.2 (decrease)
Creatinine- 4.20 (increase)
BUN- 96 (decrease)
Potassium-4.8 (decrease)
Weight-Hosp-  pre dialysis-193.0   post dialysis-187.4  :)

Well, faster than we could almost keep up with, the Docs all agreed that it was indeed time to start dialysis. 
As I mentioned yesterday, he could continue the diuretic approach for a while to try to remove the excess fluids, but the diuretic's negative effect on the kidneys, would probably cause the fluid to come right back once diuretics were stopped.
The Docs want to try to improve the kidneys and their function and they think the amount and duration of diuretics needed to get enough fluid off will be too tough on them.
As we were discussing and agreeing to dialysis, hospital transportation showed up to take B down to get the new central line placed.
We really didn't have too much time to stress or worry about it because it happened pretty darn quick.
And, thankfully, within a short time, the skillful folks down in central-line-placementville had the new line installed in exactly the place the Docs wanted, with no issues at all. Whew! What a relief!
So, right now, as I type, he is almost 2/3rds done with his first dialysis session.
Being new to all this, I think it's going as they hoped it would. 
They have a goal to remove 2000 cc's of fluid this session along with the usual blood cleansing stuff that dialysis does.
I believe the Docs want to do this several more times over the next few days to see if the fluids go down and if the renal numbers start improving.
All the Docs think dialysis will be just a temporary thing, needed occasionally for maybe just the next week or two, and then his own kidneys will start working better.
Fingers crossed this will do the trick. We're hopeful and excited.
(Post dialysis note: They were successfully able to remove 2 liters (2000 cc's.) of fluid with no issues. B lost 5.6 lbs during the 3 hour procedure).

On another note, our beloved Doc Chen has called B several times since we started this transplant process. And she called again last night to tell him how well she hears he's doing and to not be afraid of dialysis if it comes to that. She also thinks dialysis will be just a temporary bump in the road, not lasting very long. Her pep talk was just the thing he needed to hear. She has a wonderful calming effect on him and her call to him last night made him a happy camper.
Thanks Doc.

MARCH 14- Thursday-
Today's numbers:Hosp
Hemoglobin- 9.5 (decrease, no transfusion)
Platelets- 68 (decrease, no transfusion)
Neutrophils- 4.14 (decrease)
White Blood Count- 5.5 (increase)
Creatinine- 4.03 (increase)
BUN- 100 (increase)
Potassium-5.0 (unchanged)

We were told that at about day 30, B's blood levels would dip a bit. And, right on schedule, they have. We were also told not to get alarmed by this, that it is part of a normal post-transplant cycle. So, we will not give this drop any worry. We have enough to worry about with his darn kidneys.
Speaking of those darn kidneys, the diuretics are getting rid of some of the fluid retention, but the increase in Creatinine and BUN levels, which the diuretics are causing, is not good.
Doc Schriber thinks we are simply 'moving the chairs around' and that the amount of diuretics needed to bring down the fluid levels will increase the stress on the kidneys, which will in turn just cause the fluid to come right back.
He's recommending dialysis to help 'take a few chairs out of the room'.
We don't really have any issue with dialysis except the lack of real estate for putting in the new central line necessary. B's chest is somewhat compromised from the radiation therapy he had in 2000 to fight his original bout with Non-Hodgkins Lymphoma. Radiation can cause scarring and changes in tissue and this could make placing another central line tricky.
Also, anytime you break skin to insert a foreign object, B's risk is greater for infection because of his suppressed immune system.
But, I think it may be fast approaching time to 'bite the bullet' and get another central line installed and start dialysis.
We'll see what tomorrow brings. 

MARCH 13- Wednesday-
Today's numbers:Hosp
Hemoglobin- 9.7 (increase, no transfusion)
Platelets- 90 (increase, no transfusion) Still climbing!
Neutrophils- 6.20 (decrease)
White Blood Count- 8.1 (decrease)
Creatinine- 3.96 (increase)
BUN- 97 (decrease)
Potassium-5.0 (decrease)

The IV drip did help eliminate some fluid. He got rid of more than he took in, so this approach appears to be working somewhat. They would like to continue this for 4 or 5 days depending on the diuretics continued success and the lack of any serious side effects. I was alarmed to hear that loop diuretics, can cause deafness. Irreversible deafness! What?! 
I told the kidney Doc that I was not at all comfortable with this risk. But, she said to just be vigilant for any signs his hearing is decreasing and they will stop the drug. So I Googled Ototoxicity caused by diuretics and found that the deafness doesn't necessarily show up right away. That it could manifest months after discontinuing the drug.
Hmmm? Really? My spidey senses are once again tingling.
Also, diuretics do stress the kidneys a bit, so his Creatine levels increased today.
So, if the renal labs take a dive because of the diuretics, they may have to discontinue this approach.
There seems to be no easy answer. One thing leads to another. But, his skin is about to burst, and the stress this extra fluid is putting on his heart and lungs, has
us willing to give it another 24 hours to see if more fluid can be dropped.
His weight finally did get below 200 this afternoon.
Let's see what tomorrow brings. 
The good news today is he continues to do quite well from the Bone Marrow Transplant point of view. He is not showing any signs of Graft vs. Host disease (knock wood) and his blood counts are stellar. Well, stellar for him.
His platelets broke 90! And the rest of his blood counts, while also still below normal, are sooooo much better than they were pre-transplant. It's been 18 days since his last platelet transfusion (Feb. 23), and 23 days since his last red blood transfusion (Feb. 18).
We will celebrate these victories as B struggles through the setbacks.
It's all a balance.

MARCH 12- Tuesday-
Today's numbers:Clinic
No CBC today.
Creatinine- 3.87 (increase)
BUN- 98 (decrease)
Potassium-5.2 (increase)
Weight-Clinic-203 Hosp-201.06

This morning, at clinic, the transplant Docs decided to try a more aggressive approach to address the debilitating water retention hounding B.
They gave diuretics via IV, setting goals to meet within a set time frame, saying, if those goals weren't met, they would re-admit him to the hospital to consider starting the dialysis option for volume reduction.
Well, those goals weren't met, so this afternoon he went back into the hospital.
But, the kidney Doc once again didn't think dialysis, as a tool for just volume reduction, was the right choice at this time.
She could not predict if it would have a significant effect on reducing B's water retention, at least not enough to warrant the risks. And his renal labs are not bad enough to meet the dialysis criteria, so no dialysis again. 
Instead, they are going to try a 24 hour IV drip of diuretics, to see if that might kick-start the kidneys and help reduce some of the water retention.
One bit of good news is, at this morning's 10am clinic weigh-in, his weight appears to have gone down 2 lbs. 
5 hours later, when weighed on the hospital's scale, he was down yet another 2.
Not sure if this is just discrepancies between scales, or an actual 4 lb weight loss.
Either way, it was a loss, and we're happy about that.
Maybe he will get below 200 by tomorrow.
Here's hoping. 

MARCH 11- Monday-
No CBC today.
Weight-Clinic- 205

Once again, I didn't get the renal lab printout today. But, the numbers were basically the same. I know the potassium was still 5.1.
The Docs are telling us to stay the course.
After many days of increases, his weight basically stayed the same.

MARCH 10- Sunday-
No CBC today.

Didn't get print out of renal labs today, but from memory I believe they were basically unchanged. BUN went down a smidge, Creatinine went up a smidge and Potassium stayed the same.
His weight went up yet again. They are considering dialysis just to see if they could reduce the sheer volume of fluid that is accumulating in B. The kidney Docs aren't sure how much actual volume reduction dialysis would achieve and if it is worth the risks that come with dialysis. His renal numbers, while poor, are not poor enough to warrant dialysis at this time. But the volume issue has them still considering it.

MARCH 9- Saturday-
Today's numbers:Hosp
No CBC today.
Creatinine- 3.79 (increase)
BUN- 101 (unchanged)
Potassium-5.1 (decrease)
Weight-Hosp- 204

The Docs gave B a drug (Kayexalate) yesterday to help reduce his potassium level and it seems to have worked. His potassium is still to high, but hopefully not dangerously so.
They've told us that 6 or above would be a bad potassium number to see, and could potentially cause heart rhythm problems, so we're glad to see the decrease today.

The Docs are also so happy with B's blood lab results lately, that they aren't going to be doing CBC's everyday. So, I won't be posting daily lab numbers for hemoglobin, platelets, white counts and neutrophils as I have been.
I will continue to post the CMP (renal) numbers as I get them.
I hope someday to watch these renal numbers join the blood-counts by going in the right direction towards normal.
I've also started tracking B's water weight gain here too.
That's another number we really need to see start declining soon.

MARCH 8- Friday-
Today's numbers:Clinic
Hemoglobin- 9.5 (increase, no transfusion)
Platelets- 83 (increase, no transfusion) Still climbing!
Neutrophils- 6.56 (increase)
White Blood Count- 8.8 (increase)
Creatinine- 3.62 (increase)
BUN- 101 (increase)
Potassium-5.4 (increase)
Weight-Clinic- 202

His renal labs were poor today. They all went in the wrong direction.
I think dialysis is probably going to happen in the not so distant future.
His potassium is again dangerously high, and Creatinine and BUN levels went up as well.

His blood counts continue to be the good news of the daily lab reports. Thank goodness there's something positive to focus on, because these renal lab results are very disappointing.
B's now officially gained 40 lbs of water weight since the transplant process began the first week of February.
40 lbs in one month!
His skin is stretched almost to it's limits and I can't begin to describe how uncomfortable he is from the swelling. Can you imagine gaining 40 lbs in just one month?!
This weight issue, coupled with the poor renal lab results today, could be the deciding factor to go ahead and get the dialysis option in play, maybe as soon as this weekend.
After the weigh-in and labs this morning, we were sure they'd want to readmit him to the hospital today, but the Docs want to try to keep addressing these issues as an outpatient. At least for today. We'll see what tomorrow brings.
B does say that he really likes not being in hospital and hopes these renal problems can be successfully tackled as an outpatient.
Time will tell.

MARCH 7-Thursday-
Today's numbers:Clinic
Hemoglobin- 8.9 (decrease, no transfusion)
Platelets- 76 (increase, no transfusion) Woot! Woot! Go platelets, go!
Neutrophils- 6.07 (decrease)
White Blood Count- 7.9 (unchanged)
Creatinine- 3.51 (decrease)
BUN- 100 (decrease)
Potassium- 5.1 (increase)
Weight-Clinic- 201

First night home went well.
Went to the transplant clinic today for labs and additional instructions on how to administer his meds and other post-hospital stuff.
Proper medications given at the correct times, especially the anti-rejection stuff, is super important.
Can't miss a dose. Ever.
And don't even get me started on how difficult it is to find food he's actually allowed to eat. It's not the neutropenic diet, but the renal diet that is giving me fits.
The neutropenic diet doesn't allow anything fresh, and the renal diet pretty much eliminates anything processed.
I went to the store yesterday with 3 pages of guidelines as to what he could and couldn't eat and ended up almost having a meltdown in the middle of the grocery store aisle.
Picture this;
I've got limited time to shop because I have to get back to the hospital for medication instructions before B's release. The grocery store is super busy with aisles that are extra narrow.
Then, there's me, with my 3 pages of the good, the bad and the ugly food choices given to me by the Docs. I'm having to read every single label of anything I might even consider feeding B.
The main culprits here are sodium and potassium. Sodium is commonly listed on the nutritional labels, but most labels don't include potassium amounts. And just because it's not on the label, doesn't mean it isn't in the food. And for B right now, too much potassium could have devastating effects. Like making his heart stop. So I was taking this task seriously.
But, I found I was in the way of all the other shoppers a lot and I was taking way too much time to get just a few good food candidates in the cart. I had a moment of total despair. I almost started to cry, then the moment passed and I was good again.
But dang, crying in the grocery store, really?
I'm putting together meal ideas now beforehand, and researching the foods on the internet for potassium content, so the next store adventure won't be so overwhelming.
I looked for a kidney diet app for my iPhone, but the one I found wasn't very user friendly. Supposed to make it easier. This one didn't.
Any geeks out there, here's a good cause app to invent. Scan the food, show the potassium content. Just sayin'.

Most of B's labs were good today.
Creatinine and BUN went down. Potassium stayed the same (darn).
He started some physical therapy today, but the extra weight he's carrying is making everything tough to do.
So first day home went fairly well. I was able to feed him, and he didn't miss a med.
He didn't go backwards at least, and we'll take that.

MARCH 6-Wednesday-
Today's numbers:Hosp
Hemoglobin- 9.2 (increase, no transfusion)
Platelets- 68 (increase, no transfusion)
Neutrophils- 6.28 (decrease)
White Blood Count- 7.9 (decrease)
Creatinine- 3.64 (decrease)
BUN- 107 (decrease)
Potassium- 5.0 (decrease)

B's renal labs improved ever so slightly, as did his potassium, so....
they let him leave the hospital!
We didn't actually get in the car until almost 8:30pm tonight and we are beyond tired, but we're excited as well. Another milestone.
I am nervous, but as I said earlier, not daunted, and I know we will have a good night tonight.
Plus, we remain so linked to the hospital it's not funny. If anything at all worries me, anything, I have the direct number to his regular nurses on the Bone Marrow Transplant unit. And if they think something is amiss, I just take him straight back there to that unit, which is only 5 minutes away.
No ER, no hoops to jump, no long waits, just instant care as soon as we arrive.
That helps a lot with giving me a sense of peace this evening as we spend our first night in over 3 weeks out of the hospital.
His weight remains a gigantic issue. (No pun intended)
He now has gained 38 lbs in one month. It's tied to his kidney function, and once those guys kick in and start really working the way they should, the weight should drop quickly.
But, carrying that extra 38 lbs is, I think, the main reason he's still feeling funky and weak. And although he rarely complains, I can see it in his face that he's discouraged and exhausted by this part of the process.
I try to remind him of the victories he's had so far (platelets are 68 today!) and encourage him to hang in there, that this too will pass.
So, here's to giving him the strength needed to see it through, physically and emotionally, these next few weeks/months as he waits for his kidneys to wake up.
Come on B, you can do it!

MARCH 5-Tuesday-
Today's numbers:Hosp
Hemoglobin- 9.1 (increase, no transfusion)
Platelets- 60 (increase, no transfusion)
Neutrophils- 6.79 (increase)
White Blood Count- 8.7 (increase)
Creatinine- 3.88 (increase)
BUN- 111 (decrease)
Potassium- 5.5 (increase)

Platelets broke 50!! By a dime. Yes!
But, the darn renal numbers went in the wrong direction again.
And his weight once again went up too.
So, it's been a good news/bad news sort of day.
Blood counts great. Renal counts, not so much.
His potassium levels (which are also tied to the kidneys) have actual reached a dangerous level, one that could interfere with his heart's rhythm. So they gave him some special meds today to try to control that level and put him on a heart monitor to make sure he's not having any heart rhythm issues.
This newest wrinkle could keep him from leaving the hospital tomorrow as planned.
I'm okay with that. I want him to be out of danger before I take on his full time care.

MARCH 4-Monday-
Today's numbers:Hosp
Hemoglobin- 8.9 (decrease, no transfusion)
Platelets- 47 (increase, no transfusion)
Neutrophils- 5.23 (decrease)
White Blood Count- 7.0 (decrease)
Creatinine- 3.84 (decrease)
BUN- 115 (decrease)
Potassium- 5.3 (increase)

Guess whose renal counts all went in the right direction? And guess who's probably going home Wednesday? A week ahead of schedule!
Yep. You're right.

MARCH 3-Sunday-
Today's numbers:Hosp
Hemoglobin- 9.2 (increase, no transfusion)
Platelets- 45 (increase, no transfusion)
Neutrophils- 6.2 (increase)
White Blood Count- 8.6 (increase)
Creatinine- 4.03 (decrease)
BUN- 122 (decrease)
Potassium- 4.9 (decrease)

All the lab numbers once again went in the right direction.
The blood counts rose and the renal counts dropped. Yes!
The renal counts are creeping down ever so s-l-o-w-l-y, but, at least they're going down.
His weight is stable, not going up or down. I'm glad he's finally not gaining anymore water weight, but if he could start losing this extra weight, he might actually start feeling good. He still feels just so-so, and almost all of his discomfort is tied to the extra weight.

His blood counts continue to shine! Hemoglobin holding steady and platelets rising everyday. They're 45 today!
I'm beginning to sound like a broken record, but it's still his darn kidneys holding up the show.
Here's to those renal labs and excess weight starting a free fall soon so we can get this show on the road. Or at least get this show out of the hospital. We've been here 3 weeks so far and are both looking forward to a change of scenery. Although, the nurses and staff here are AMAZING!!!
I am a bit nervous when it comes time for me to take on the full responsibility of caring for B 24/7 as well as they have been doing.
Nervous, but not daunted. I know I can do it.

MARCH 2-Saturday-
Today's numbers:Hosp
Hemoglobin- 8.9 (unchanged, no transfusion)
Platelets- 39 (increase, no transfusion)
Neutrophils- 4.87 (decrease)
White Blood Count- 8.5 (increase)
Creatinine- 4.32 (decrease)
BUN- 126 (increase)
Potassium- 5.0 (increase)

All of B's numbers went in the right direction today.
His Creatinine, BUN and weight all went down. Granted, they only went down a smidge but, that's better than going up.
And look at his platelets! 39! Tomorrow will be one week since he's needed a platelet transfusion. It's been over a year since he's gone a week without needing platelets. 39 is still considered critically low (150 is low normal), but for B, 39 is a great number.
Now, we are wondering just where these platelet numbers will top out at. Could he actually reach a normal count someday? I believe he will. Go platelets, go!
B's last packed red cell (hemoglobin) transfusion was Monday, Feb 18th. Almost 2 weeks ago!
After the better part of 16 months, rather than riding that transfusion train nearly every other day as he has been, B is finally waving it good-bye as it moves on.
I think he's going to get his miracle of good health yet!

MARCH 1-Friday-
Today's numbers:Hosp
Hemoglobin- 8.9 (decrease, no transfusion)
Platelets- 31 (increase, no transfusion)
Neutrophils- 6.05 (unchanged)
White Blood Count- 8.0 (increase)
Creatinine- 4.44 (increase)
BUN- 125 (decrease)
Potassium- 4.9 (decrease)

Go platelets, go platelets!
We are tickled pink with how well his blood counts are doing.
But, unfortunately, his kidneys are still being stubborn. We remain in wait and see mode, with dialysis still a possibility somewhere down the road, but once again, not today.
The Docs still think (thankfully) the kidneys will rebound, but that it will just take time.
His IBM co-workers did a kidney dance for him at work the other day and sent him a video of their happy dance. The sheer joy and love and giggles that went into this wonderful dance and the happy effect it had on B as he watched it, is sure to be just the magic needed to jumpstart those kidneys.
Here's to B's kidneys getting in line with his platelets, heading in the right direction and leading to his return to good health.

He finally lost a pound, instead of gaining one, so we're hopeful that some of the water weight (30 lbs) he's added these last few weeks may be starting to diminish. One lost pound is not a trend, but I'm going to believe it is the start of a positive trend.
Losing that water would go a long way in making him more comfy and, it would allow him to be able to leave the hospital and start managing his transplant as an out-patient through daily visits to the Bone Marrow Transplant clinic.
He's really doing so well in all regards except for those darn kidneys. He's off all IV's, and is pretty mobile. He's had no infections, fevers or any sign of GVH.
His mood has improved and he's almost his old self, playing XBox, watching movies and making his nurses laugh with his wonderful sense of humor.
Gotta love this guy.

FEBRUARY 28-Thursday-
Today's numbers:Hosp
Hemoglobin- 9.1 (decrease, no transfusion)
Platelets- 25 (increase, no transfusion)
Neutrophils- 6.05 (increase)
White Blood Count- 7.9 (increase)
Creatinine- 4.25 (increase)
BUN- 126 (increase)
Potassium- 5.2 (increase)

Yep, it's a trend. For the first time in over a year, he's making his own platelets.
And his Hemoglobin is holding steady.
Happy Birthday to you B.
Love you Mister.

FEBRUARY 27-Wednesday-
Today's numbers:Hosp
Hemoglobin- 9.2 (increase, no transfusion)
Platelets- 19 (decrease, no transfusion)
Neutrophils- 5.04
White Blood Count- 7.3 (increase)
Creatinine- 4.18 (increase)
BUN- 121 (increase)
Potassium- 5.1 (increase)

Not sure if the platelets are showing a trend or not yet, but they only dropped by 1 so I'm thinking he must be making some platelets himself with his new bone marrow. A few more days of stable platelet labs will help verify that.

His kidney function is still going in the wrong direction. Dialysis is being discussed daily, but still on a wait and see basis based on each day's labs. Boy, do we need those Creatinine numbers (and B's water weight) to start retreating.
From a strictly Bone Marrow Transplant viewpoint, he's doing great.
But those darn kidneys are keeping him from feeling well enough to celebrate this wonderful accomplishement.

Tomorrow is B's birthday.
I know what he's wishing for and I know all of us who know and love him are wishing for him the same. Come on kidney function, make his wish come true.

FEBRUARY 26-Tuesday-
Today's numbers:Hosp
Hemoglobin- 9.4 (increase, no transfusion)
Platelets- 20 (increase, no transfusion)
Neutrophils- no report
White Blood Count- 5.6 (increase)
Creatinine- 3.94 (increase)
BUN- 117 (increase)
Potassium- 4.6 (decrease)

Look at that White Blood Count! Wow.
And the Red Cells continue to hold above 9!
And... his platelet count increased, without a transfusion! That has not happened in over a year. The Doc says that one day does not make a trend, but I am cautiously optimistic that maybe his marrow is making platelets too.
Wouldn't that be amazing.
Here's to tomorrow's labs showing a positive platelet trend.

The above is all good news, but I'm sorry to report his kidney's have not improved at all yet. And he gained another few pounds. If only this renal issue would start improving, he would be doing so darn good.

Dear God.
Please help B's kidneys to start getting better. And please let him start to lose a few of those water weight pounds so he's not so darn miserable. He feels like a water balloon.

FEBRUARY 25-Monday-
Today's numbers:Hosp
Hemoglobin- 9.3 (decrease, no transfusion)
Platelets- 18 (increase, no transfusion)
Neutrophils- no report
White Blood Count- 3.6 (increase)
Creatinine- 3.88 (decrease)
BUN- 112 (decrease)
Potassium- 4.7 (decrease)

Ups and downs.
Every day has some ups and some downs.

Today's downs-
~Kidneys are still misbehaving, but not bad enough for dialysis yet.
We know that any day now the Docs could give dialysis the nod, and we remain somewhat ready emotionally and mentally for that possibility, but we still sure hope it can be avoided.
~B's hair officially started falling out in clumps. So, the nurse went ahead and shaved it all off, including his beard. I put this under the down category, but really, he's cute in a Telly Savalas sort of way. And since we knew this was going to happen, I probably shouldn't count it as a down.
~He is still is gaining weight. Almost 30 lbs in the last few weeks, almost certainly, water weight. About 2 lbs a day. Probably tied to his kidney issues, this is probably the most uncomfortable of any issues he's dealt with so far. I can't wait to be able to report his weight going down.
~Finally, his usually optimistic spirit, is down today. I know it's a temporary thing, and that he will perk up again, but to see him sad is simply almost too hard to bear. Come on fates, give him a boost of feel-better, both physically and mentally.

Today's ups-
~B's White Blood Count continues to climb, climb, climb. He's definitely engrafted. That's a great thing, although with engraftment comes a whole new realm of possible setbacks. The Docs are watching him like hawks for any sign at all of GVH, Graft vs. Host disease. This potentially ugly side effect of transplant can present in a variety of ways, from mild to severe, and usually starts when the White Blood Counts start rising. The Docs actually prefer transplant patients get a mild case, because that can help with fighting the MDS, but a a severe case could be catastrophic.
~It's been 8 days since B's had a Red Blood Cell transfusion. And he's still in the 9+ range.
Not needing a Red Blood Cell transfusion in a week hasn't happened for quite some time and could be a sign that his donor's cells are now making Hemoglobin for him. If he continues to hold above 9, that will be a very good thing. These Red Cell transfusions this last year have really been contributing to his iron overload issues and it would be huge if he didn't need them anymore. Maybe, if his platelets also recover soon, he could then start an iron chelating process to, over time, reverse his Hemochromatosis (iron overload). I'm sure chelating is much further down the road, but that would be awesome.

FEBRUARY 24-Sunday-
Today's numbers:Hosp
Hemoglobin- 9.4 (decrease, no transfusion)
Platelets- 12 (increase, transfusion 1 unit)
Neutrophils- no report
White Blood Count- 2.1 (increase)
Creatinine- 3.94 (increase)
BUN- 115 (increase)
Potassium- 5.0 (increase)
Day +11.

Yesterday, I used the metaphor of valleys and mountains to describe the highs and lows of B's transplant journey. And yesterday was more about mountains, than valleys.
Today, not so much.
His darn kidneys have once again taken a turn for the worse (the Creatinine labs have returned to their highest levels since before they started falling) and we are back to a day by day status on whether or not he will need dialysis.
Hopefully, this is just a temporary setback, and his kidney numbers will improve tomorrow.
And, he's needed a 5 units of platelets these last 5 days. That's way more than he usually gets, but the Docs say it's because of the chemo. Sure hope this turns around soon. Platelets are supposed to be the last blood component to 'wake up' post transplant, so it could be a while. But, once they do wake up, perhaps B's one and a half year long, transfusion train ride will finally be reaching it's destination.
Come on bone marrow! You're doing great with the white blood cells. Now, could you start making red cells and platelets!

FEBRUARY 23-Saturday-
Today's numbers:Hosp
Hemoglobin- 10.0 (increase, no transfusion)
Platelets- 10 (increase, transfusion 1 unit)
Neutrophils- 0.25
White Blood Count- 1.0 (increase)
Creatinine- 3.67 (decrease)
BUN- 109 (decrease)
Potassium- 4.3 (decrease)

We knew going in that this would be a journey of ups and downs.
Valleys and mountains.
Today, B might have gotten a glimpse of his first mountain top.
The Doc told him this morning that they can definitely say his donor's cells are engrafting.
His White Blood Count and Neutrophils are on the rise. That first major (mortality) hurdle has been jumped.
And that valley of impending kidney failure seems to be in the rear view mirror. They told him today they think his kidneys could be on the mend and he probably won't be needing any dialysis. His Creatinine and BUN numbers continued to show improvement since yesterday. His water weight hasn't abated yet, but in time, that should also improve.
And that mountain top became even clearer to see when, just in passing, as Doc Briggs was leaving this morning, she said over her shoulder, and I quote, "I'm off for the next week so Doc Schriber will be here, and I bet by the time I get back next weekend, you'll be out of the hospital."
Possibly out of the hospital by day +17.!?
He was told initially to expect to be in hospital for 4-6 weeks.
And while we know, he could encounter another valley this next week and not go home early, the very mention of him possibly being well enough to get out of hospital ahead of schedule, is a very good sign.
A very good sign indeed.
Thank you all for your prayers, support, positive healing energies and love.
Let's show these transplant Docs that this 63 year old, with multiple co-morbidity risks, can do this.
B can do this!

FEBRUARY 22-Friday-
Today's numbers:Hosp
Hemoglobin- 9.6 (decrease, no transfusion)
Platelets- 4 (decrease, transfusion 1 unit)
Neutrophils- no report
White Blood Count- 0.3 (increase)
Creatinine- 3.80 (decrease)
BUN- 119 (decrease)
Potassium- 4.4 (decrease)

At the risk of jinxing something by celebrating too early, we're doing a happy dance today.
His Creatinine number went down!! That's the sign we've been waiting for, the sign that his kidney function may be starting to recover.
While we need the Creatinine levels to continue to drop every day, we will take this small victory today.
And pray that we can keep on dancing tomorrow.
Keep those healing thoughts and prayers coming.

FEBRUARY 21-Thursday-
Today's numbers:Hosp
Hemoglobin- 10.0 (decrease, no transfusion)
Platelets- 32.0 (increase, no transfusion)
Neutrophils- 0.03 (increase)
White Blood Count- 0.2 (increase)
Creatinine- 3.92 (increase)
BUN- 121 (increase)
Potassium- 4.7 (decrease)
Day +8.

Good morning.
B's renal labs once again did not increase at an alarming rate. That's a good thing.
But, they did increase.
A better thing would be to see an actual decline in the Creatinine and BUN levels, but at least they only climbed a smidge for the second day in a row.
So, we remain in wait-and-see mode for another day with regards to dialysis.
Keep those kidney focused prayers and healing energies coming.
We may get our miracle yet.

Also, during this morning's visit, it was hinted that maybe B may be an early engrafter. This transplant team has many, many years of experience in gaging signs of engraftment, and they think, based on a few of their observations of B, he may be showing early signs.
Engraftment typically can take 2-4 weeks, so all along we've been saying his engraftment would happen on Feb. 28th, his birthday, 15 days after transplant.
Today, they said they wouldn't be surprised if he gets that birthday present early.
Cool. I sure hope they're right.

FEBRUARY 20-Wednesday-
Today's numbers:Hosp
Hemoglobin- 11.0 (increase, no transfusion)
Platelets- 8.0 (decrease, transfusion 2 units)
Neutrophils- 0.02
White Blood Count- 0.1 (decrease)
Creatinine- 3.87 (increase)
BUN- 117 (increase)
Potassium- 5.2 (increase)
Day +7.

So, while B's kidney function still remains yukky, today's labs show their decline has slowed a bit. The labs are still going in the wrong direction, but not nearly as quickly, so, they have cancelled/postponed today's surgery to place the additional central line needed for dialysis.
The Docs are taking it a day at a time, and tomorrow, the surgery could be scheduled again, but today, it is a no go.
That's sort of good news, even if just for today. Maybe, just maybe, his kidneys will make a rebound and dialysis won't be needed.
He has a wonderful team of 3 Docs who are brainstorming all the time about this kidney issue. His cardiac Doc joked this morning that between the three of them, him, the renal doctor and the transplant doctor, there is a pessimist, an optimist and a realist. He said he wouldn't say who was who, but I knew from our one on ones with each of them which moniker to apply.
The renal (kidney) Doc is optimistic that B's kidneys may be ready to rebound, but the transplant Doc says we are just delaying the inevitable.
Time will tell, but of these three Docs, the transplant Doc knows more about what to expect from a transplant patient, so she may be right.
Come on kidneys, surprise the transplant doc!

Today is Day +7, exactly one week since the Bone Marrow Transplant.
And if B didn't have this darn kidney issue, he would be doing really quite well from a purely Bone Marrow Transplant perspective.
His vitals remain stable, he hasn't run any fevers and the mouth sores they predicted he'd have by now, still haven't arrived.
On his actual day of transplant, as the donor's cells were being infused, the nurse asked if he wanted to listen to any music or a particular song as the transplant began.
'Accentuate the Positive' popped into his head, so we listened via our cell phones to several different versions from various artists over the decades. It really was sort of fun and, as we continue along this path to wellness for B, we will continue to focus on the positives.

FEBRUARY 19-Tuesday-
Today's numbers:Hosp
Hemoglobin- 10.9 (increase, no transfusion)
Platelets- 21 (decrease, no transfusion)
Neutrophils- not reported
White Blood Count- 0.2 (decrease)
Day +6.

Kidney function is still not good.
Tomorrow, midday, they will install another central line in B, then begin dialysis.
The hope is dialysis will alleviate the dismal kidney function symptoms, and make B more comfortable. Dialysis won't make the kidneys start working, but it will relieve the swelling and toxins that have been B's biggest issue so far post Bone Marrow Transplant.
The Docs have been adjusting B's meds like crazy to find the gentlest blend that will do what's needed, with minimal effect on his beaten up kidneys. The thought is that, at some point, the kidneys will rebound and start working again, especially if they aren't being pounded by meds that are hard on them.
We are nervous about tomorrow's surgery, but will keep the faith that it will go smoothly and within a few days, B will be feeling better.
Keep your prayers coming.
He needs them more than ever.

FEBRUARY 18-Monday-
Today's numbers:Hosp
Hemoglobin- 8.1 (decrease, transfusion 2 units)
Platelets- 38 (increase, no transfusion)
Neutrophils- not reported
White Blood Count- 0.3 (decrease) 
Day +5.

His kidney function is still going in the wrong direction.
And he's really feeling miserable. Because of the water retention that occurs with kidney failure, he's gained almost 25 lbs of water weight in just the last week.
A lot of it is around his chest, which is putting stress on his heart.
Any day now they will probably decide it's time to try dialysis. And in order to do dialysis, he would need to have another central venous line installed.
There are several risks with doing this additional line placement surgery.
First, because of scar tissue from 2 previous ports installations and removals, and the radiation B underwent in 2000 for the Non-Hodgkins Lymphoma lung mass, they are running out of viable real estate on B's chest to actually place another central line.
Then, there's the danger of bleeding because of low platelets.
Finally, the danger of infection is more in play than ever because of his lack of any immune system right now.
But, kidney failure will trump all those risks and if he needs dialysis, then he will need this additional line.
I half suspect tomorrow may be the day.
Unless we get a miracle overnight.
Praying hard for our miracle.
Come on miracle. Come on kidneys. Come on.

FEBRUARY 17-Sunday-
Today's numbers:Hosp
Hemoglobin- 8.9 (decrease, no transfusion)
Platelets- 12 (decrease, transfusion 1 unit)
Neutrophils- not reported
White Blood Count- 0.6 (decrease) 
Day +4.

Well, the renal labs aren't cooperating yet.
And he's developed a few physical signs that his kidneys are indeed failing.
As I said yesterday, if he needs dialysis, we are thankful that they have this tool to treat kidney failure, and we will stay hopeful that it will be a temporary situation.

FEBRUARY 16-Saturday-
Today's numbers:Hosp
Hemoglobin- 9.0 (decrease, no transfusion)
Platelets- 16 (decrease, no transfusion)
Neutrophils- not reported
White Blood Count- 0.8 (decrease) 
Day +3.

Kidneys are still misbehaving.
Darn it. 
Today Doc Briggs (Doc Schriber's partner) said if the renal labs don't start improving by Monday, the dialysis option may have to be played. 
Hoping tomorrow's renal labs will show a change of direction, in a good way.

On a different note, a bit of positive news was delivered regarding the 150+ platelet transfusions B's had this last year and a half. He hasn't developed 'antibodies' from these multiple platelet transfusions. I gathered from the Doc's surprise at this result, that this is considered amazing because of the sheer quantity of transfusions he's had. While I don't understand the significance medically, I'm happy the Docs are happy about this.
Because of this, the Docs have lowered their platelet transfusion threshold number to 15 or below. In a perfect world, once B's donor cells engraft, he should start making his own platelets, so the Docs are trying to minimize the number of platelet transfusions they give him these next weeks to avoid that 'antibody' issue occurring in the home stretch. Of course, if he were to have any bleeding problems, they will give him platelets as needed.

Now, if we could get those darn kidneys to start playing ball, B would be doing actually okay at this stage.
His vitals are stable, he hasn't run any fevers (knock wood) and the mouth sores they predicted he'd have by now, haven't arrived. I say all this at the risk of jinxing these good things, but we are trying to focus on the positives.
And if he ends up on dialysis in the next week, we will be thankful that they have this tool to address kidney failure, and hold out hope that it will be a temporary situation.
Thanks for your prayers... and please keep them coming.

FEBRUARY 15-Friday-
Today's numbers:Hosp
Hemoglobin- 9.6 (increase, no transfusion)
Platelets- 24 (decrease, no transfusion)
Neutrophils- not reported
White Blood Count- 1.5 (increase) 
Day +2.

Last night, B got quite a headache.
He had also started to retain quite a bit of fluid throughout yesterday and it made him very uncomfortable last night as well.
In fact, we didn't sleep at all.
And this morning, the Doc delivered some distressing news.
B's kidneys are not behaving. And, if they don't start improving soon, the Docs say he may need to begin dialysis. They said, while he's not at that point yet, in their experience with other patients whose kidney's have presented this problem, this early in transplant, dialysis could be a real possibility for B in the future. And dialysis could be a temporary situation, or a permanent one.
He handled this news quite well.
I, on the other hand, found myself simply not letting my brain go there.
I will accept it if it comes, but my first response mentally was, B's not your typical patient. I'm envisioning B getting through this first crisis, without longterm complications. I envision his kidneys rebounding.
I'm reminded of the Docs telling B he would never sing again after vocal chord cancer. And while he lost a few notes in that battle, what he's done with the notes he has left, has melted the hearts of many.
Nothing's written in stone. Not with B.

FEBRUARY 14-Thursday-
Today's numbers:Hosp
Hemoglobin- 8.8 (decrease, no transfusion)
Platelets- 37 (increase, no transfusion)
Neutrophils- not reported
White Blood Count- 0.7 (increase)
Day + 1.

B's felt pretty good today.
We've been told the effects of the chemo will hit this weekend and he will start to feel yukky.
But, today, he's been good, and we'll take that on this holiday of chocolate and love.

FEBRUARY 13-Wednesday-
Today's numbers:Hosp
Hemoglobin- 9.7 (increase, no transfusion)
Platelets- 14 (decrease, transfusion 1 unit)
Neutrophils- not reported
White Blood Count- 0.3 (unchanged)
Day Zero.

Today was the big day.
Bone Marrow Transplant day.
At 11:15 this morning, B received the Peripheral Blood Stem Cells (PBSC) of the 35 year old female angel residing somewhere on our planet. 
We are so thankful to her and her amazing courage and generosity. Hopefully, if B beats the odds and survives this first year post transplant, we may actually get to contact her. In the meantime, we send her our love and gratitude for her kindness in helping give a perfect stranger a chance at life. If and when she gets to know B, I have no doubt she will love him as we all do. Fingers crossed we get to see that day.

The actual Bone Marrow Transplant process was a lot like a normal platelet transfusion. The donated cells were gravity dripped into B through the central Hickman line he had placed last week. To make sure they don't damage these precious, fragile cells in any way, they don't run them through an infusion pump.
The cells themselves looked a lot like a strawberry slushy, although they were not frozen. They took an hour and a half to infuse, and B had no issues during the actual infusion.
The issues will come over the next few weeks and months.
There are many things that could present as we wait for these magical cells to engraft. Actual engraftment takes 2-3 weeks.
Before they engraft, he will deal with the after effects of the 'marrow emptying' strong chemo drugs. These drugs are going to put a strain on his whole system. His organs will be put under quite a bit of stress. And, he will be completely neutropenic, with no immune system for the next few weeks, which also has the potential for disaster.
Then, in several weeks, once the stem cells engraft, Host vs. Graft disease becomes a dangerous issue. This is where the donor cells don't recognize B and start to attack the organs in his body, thinking they are foreign.
The Docs will be doing a balancing act of keeping B's system suppressed enough to keep this from happening, while allowing him to have some immunities to prevent infections. It can get quite complicated.
We will give it all we have to stay positive as these complications arise, keeping the faith that they will be controlled and he will someday have his cure.
All transplant patient's journeys are unique, some sailing through on relatively calm waters, and others, navigating some really rough waters.
I'd like to say 'if' B has complications, but, because of his age and co-morbidities, we've been told to expect complications along the way.
How severe or dangerous they will be remains to be seen.
Time will tell.
These next 100 days will be the most dangerous part of his journey so far.

FEBRUARY 12-Tuesday-
Today's numbers:Hosp
Hemoglobin- 7.1 (decrease, transfusion 2 units)
Platelets- 21 (decrease, no transfusion)
Neutrophils- not reported
White Blood Count- 0.3 (decrease)
Day minus 1.

A day of rest before the big day tomorrow.
We were just told that the actual transplant will occur at around 11 am.
So, while I know many of you are continuously sending your loving thoughts, prayers and healing energies, if you think of it, mid-day tomorrow, hold him even closer to your hearts and send extra prayers and healing energies his way. 
Pray that these stem cells will do their magic and bring him his cure, and that his suffering will be kept to a minimum during these next few weeks as he waits for that magical day of engraftment.
Thank you.

FEBRUARY 11-Monday-
Today's numbers:Hosp

Hemoglobin- 8.2 (decrease, no transfusion)
Platelets- 36 (increase, no transfusion)
Neutrophils- 0.86 (decrease)
White Blood Count- 0.9 (decrease)
Day minus 2.

B's 'marrow emptying' chemo is DONE!
He received a double dose of Melphalan today. 
Tomorrow he gets to rest a day before day ZERO (Wednesday), the day of transplant and rebirth.
He's still feeling surprisingly okay after these last 6 days of chemo. 
We know there will be rough waters ahead (and we are scared of just how rough those waters will get), but we are trying to stay even keel, focusing instead on
the prospect that at the end of this voyage, he will be cured.
Staying calm is a lot easier to do when he's still feeling okay.
We understand that in about a week from now, he will start to feel really bad, with the yukkiest stuff lasting 2-3 weeks.
I'm sure calm will not describe our emotional states during this part of the journey. 

FEBRUARY 10-Sunday-
Today's numbers:Hosp (out-patient)
Hemoglobin- 9.1 (decrease, no transfusion)
Platelets- 13 (decrease, transfusion 1 unit)
Neutrophils- not reported
White Blood Count- 1.3 (decrease)
Day minus 3.

FEBRUARY 9-Saturday-
Today's numbers:Hosp (out-patient)
Hemoglobin- 9.4 (increase, no transfusion)
Platelets- 17 (decrease, no transfusion)
Neutrophils- not reported
White Blood Count- 1.5 (decrease)
Day minus 4.

FEBRUARY 8-Friday-
Today's numbers:Doc S
Hemoglobin- 9.3 (increase, no transfusion)
Platelets- 28 (decrease, no transfusion)
Neutrophils- not reported
White Blood Count- 1.8 (decrease)
Day minus 5.

FEBRUARY 7-Thursday-
Today's numbers:Doc S
Hemoglobin- 9.2 (decrease, no transfusion)
Platelets- 43 (decrease, no transfusion)
Neutrophils- 1.55 (increase, No Neupogen)
White Blood Count- 2.4 (increase)
Day minus 6.

FEBRUARY 6-Wednesday-
Today's numbers:Doc S
Hemoglobin- 9.8 (increase, no transfusion)
Platelets- 60 (decrease, no transfusion)
Neutrophils- 1.42 (decrease, No Neupogen)
White Blood Count- 2.3 (decrease)

Day minus 7! One week from today, B will receive his donor's stem cells.

The marrow emptying chemo has begun!
For the next 5 days he will receive Fludarabine, followed by one day of Melphalan.
B's Neutrophils and White Blood Counts are falling, because now, with the transplant process about to begin, he can no longer have Neupogen shots to build them back up.
His donor, on the other hand, is about to begin Neupogen shots. She will receive 5-6 days of Neupogen to increase her blood counts, so that when they harvest her stem cells on Tuesday, she will have an abundance of what the Docs need.

B has now entered a Neutropenic phase that will probably last for at least a year. This lack of an immune system is just one of the dangers he will face during this Bone Marrow Transplant process.
Strangely, once the donor cells engraft, his immune system will probably start working on it's own, but the Docs will then have to suppress it with anti-rejection drugs so the transplanted stem cells (from the donor) don't mistake B's body as an intruder and attack it. That complication, which almost always occurs to some degree in Bone Marrow Transplant patients is called Graft Vs. Host disease. It is another one of the potentially big dangers he will face. I'll get into it a bit more in another post because it's quite complicated, but keeping B's immune system suppressed enough to prevent the donor's cells from attacking, while still allowing him to have some immune system, will be quite a balancing act for the Docs.
The days of me giving B Neupogen shots are done.
There are some pretty ugly viruses and bugs that will do their best to take advantage of B's weakened state, and we have to pray that whatever presents will respond to the antibiotics and other treatments the Docs have in their arsenals.

FEBRUARY 5-Tuesday-
Today's numbers:S Hosp
Hemoglobin- 9.7 (increase, no transfusion)
Platelets- 95 (increase, no transfusion)
Neutrophils- 3.12 (decrease, No Neupogen)
White Blood Count- 4.5 (decrease)

This morning, B had a Hickman line surgically placed in his chest. This will be the new intravenous line for his blood draws, transfusions, chemo and  ultimately, the infusion of his donor's Peripheral Blood Stem Cells. This new line replaces the PICC line he has had for almost 7 months. 
The surgery went well, with no issues.
Yesterday, he had 3 units of platelets and one unit of red blood cells to prepare him for this surgery. 
His platelet count was 95 this morning. 95! While none of these platelets were his own, that's the highest platelet count he's had in over a year and a half.
Theoretically, if this Bone Marrow Transplant works for B, he will start making platelets again on his own someday.
It would be such a wonderful miracle if this works and someday he can finally step off the transfusion train he's been riding these last 18 months.

FEBRUARY 4-Monday-
Today's numbers:Doc C
Hemoglobin- 8.4 (increase, transfusion 1 unit prc)
Platelets- 12 (decrease, transfusion 3 units)
Neutrophils- 3.83 (increase, No Neupogen)
White Blood Count- 5.62 (decrease)

B will have surgery tomorrow to place a Hickman line. Doc Chen is loading him up with platelets so he won't have any bleeding issues.

FEBRUARY 1-Friday-
Today's numbers:Doc C
Hemoglobin- 7.6 (decrease, transfusion 1 unit)
Platelets- 20 (decrease, transfusion 1 unit)
Neutrophils- 1.81 (decrease, Neupogen at home tonight)
White Blood Count- 3.07 (decrease)

JANUARY 31-Thursday-
No labs today.

B finished his pre-transplant tests yesterday.
Today we met with Dr.Schriber to go over the results and discuss whether or not he thinks B should proceed.
The PFT test that B thought he had failed this time had surprisingly good results (actually better than the PFT done in November), improving from 50% lung capacity to 78%.
His heart issues will always be present, and his liver and kidneys, while not those of a youngster, were all performing relatively well enough to not put transplant out of reach.
Finally, the Bone Marrow Biopsy did not show the MyeloDysplastic Syndrome had advanced into a 'blast' phase, which would have been a real issue. More than likely, if that had happened, he would not be able to proceed with transplant.
So, from a purely physical standpoint, his tests results put him within the 'go' parameters. 
Today was the day for B to sign all the paperwork, authorizing the transplant.
Before signing, all the risks were laid on the table. And the Doc didn't mince words. B's co-morbidity issues (age, heart, liver, kidneys and lungs) do raise the mortality odds. He still has a 30-35% chance that this could kill him. (A younger person, without heart and lung issues, has a 20% risk of mortality).
But B is focused on the 30-35% chance he will be cured.
So he signed.
Next Tuesday, he begins the 'marrow emptying' chemo to prepare to receive the PBSC (peripheral blood stem cells) in mid February.

JANUARY 30-Wednesday-
Today's numbers:Doc S
Hemoglobin- 9.0 (decrease, no transfusion)
Platelets- 26 (no change, transfusion 1 unit)
Neutrophils- 3.22 (decrease, No Neupogen)
White Blood Count- 4.3 (decrease)

JANUARY 29-Tuesday-
No Labs today.
Today B had an EKG, PFT, CT scan and an Echocardiogram.
Surprisingly, these were all choreographed quite well and we were done early.
We also learned today that the donor is okay with the change from marrow to PBSC and is okay with the schedule too, so we didn't need to use that large eraser today.
Still going along as scheduled.
B thinks he did poorly on the PFT and is angsting a bit over this tonight.
He pulled a muscle in his back doing the breathing gymnastics required and from that point on had a tough time taking any breaths, much less the deep ones they wanted from him to measure his pulmonary function.
He's sure hoping this doesn't derail the transplant.
And, his pulled muscle is making him quite uncomfortable, darn it. Come on fates, deal him a couple of winning hands please. Anytime would be good.
We meet with Doc Schriber later this week to discuss B's viability again and (hopefully) sign the papers to authorize the procedure.
Fingers crossed he will be able to proceed.

JANUARY 28-Monday-
Today's numbers:Doc S
Hemoglobin- 9.1 (increase, no transfusion)
Platelets- 26 (increase, transfusion 1 unit)
Neutrophils- 6.91 (increase, No Neupogen)
White Blood Count- 8.2 (increase)

Today B transitioned from being under Doc Chen's care to being under the care of Doc Schriber and his Bone Marrow Transplant team. The baton has been passed.
Doc Schriber will keep Doc Chen in the loop, but she's taking a back seat until B has gotten through these next 120+ days that could pose the biggest challenges for him during this BMT process.
It was the first Monday in over a year we didn't see her smiling face. She has been a wonderful doctor and we appreciate the meticulous care she has given B.

Today, we met a few of the nurses from the new Transplant team.
B got his labs, and a platelet transfusion with them.
It's strange how different facilities have different protocols for doing the same thing. This place infuses platelets through a pump, while simultaneously mixing them with saline. We were told some time ago that platelets were too fragile to run through a pump, so I was surprised to see this. And I've never seen them diluted with saline before. Because of B's history of over 150 platelet transfusions this last year, I did question these differences from what we've encountered in the past, but was assured it was okay. 
Me, being the curious creature that I am, did do some online investigating and found a good majority of medical sites agree it's okay for platelets to be infused by pump (with saline) or by gravity.

B also had another Bone Marrow Biopsy today.
In case I haven't mentioned it lately, B is the bravest person I know. The way he handles the multitudes of invasive and painful procedures done to him on a regular basis amazes me. I know I would not be able handle these things half as well as he has.
He is a hero on so many levels.

This is a week of tests. Many, many tests. And many of these tests he's already had done in these last few months, but they need to be repeated just before Transplant to be sure that nothing has changed that could affect his survival chances. Bone Marrow Transplant is very tough on a body's organs and the Doc wants to be sure B is strong enough.
How well (or poorly) B does with all these test will determine if the Transplant will be a go or not. 
As a matter of fact, based on the results from these same tests done several months ago, the Doc informed us today that he's changed his mind from his original plan for B.
Instead of a full on myeloablative transplant, he wants to instead do a non-myeloablative transplant. Also known as a reduced-intensity BMT.
This change in plan also changes what type of transplant material B will receive. Now, instead of actual bone marrow, the Doc plans on using PBSC (Peripheral Blood Stem Cells). 
This change will require extra time to be invested by the donor, so it has to be cleared by her to be sure she can accommodate that extra time needed.
This could mean a change in the transplant date if the donor has a conflict. We should know by the end of the week.
One thing we've learned during this process is to write everything down in pencil, with a large eraser nearby. In other words, be flexible and be ready for changes.

Today's numbers:
Hemoglobin- 7.7 (decrease, transfusion 2 units prc)
Platelets- 13 (decrease, transfusion 2 units)
Neutrophils- 2.84 (decrease, No Neupogen [Sunday at home])
White Blood Count- 4.14 (decrease)

Today was one of the last days for B to get his blood transfusions with our wonderful nurses at NW Ambulatory. And today, we actually returned to our old location, the one we've been going to for over a year. I guess the behind-the-scenes glitches were resolved and this location will once again be handling transfusions.
This return to the original location won't affect B very much because soon he will be turning his transfusion needs over to the Bone Marrow Transplant team.
Doc Chen loaded him up with plenty of blood products today in case the transfusion transition takes a while.
He starts Monday with the BMT team.

Today's numbers:
Hemoglobin- 8.2 (decrease, no transfusion)
Platelets- 14 (increase, transfusion 1 unit)
Neutrophils- 5.16 (increase, No Neupogen)
White Blood Count- 6.76 (increase)

Yesterday's Neupogen shot gave B's Neutrophils and White Blood Count a pretty good boost. I wonder why some days he gets a better result from the shot than other days.
It's a mystery to me, but he's glad he doesn't have to have another shot today.
Those shots make his bones just ache.

Here's a quick update on where we stand with the Bone Marrow Transplant process.
It's scheduled for mid-February, with pre-testing and chemo occuring in the next few weeks.
The donor has agreed to the schedule and, bless her, she has agreed to donating actual marrow.
Donating marrow, is a more invasive process for the donor, requiring an overnight hospital stay where the bone marrow is taken from her hip. Donating stem cells is more like dialysis, with stem cells being removed from the blood in a 6 hour process. We can't thank her enough for agreeing to the more invasive marrow donation.
Thank you kind stranger. You are an angel.

The donor/donee relationship is an anonymous one, from both points of view.
We only know that she is a 35 year old woman, who is a 10 out of 10 match.
We don't know where she lives in the world or any other details at all about her.
She only knows that the recipient of her marrow is a 62 year old male with MyeloDysplastic Syndrome.
If each agrees in writing (in the pre-transplant paperwork), they will be able to establish contact one year post transplant. If either does not want to be contacted, it will remain an anonymous procedure.
B wants to someday be able to say thanks, so he's checking the box that gives permission to contact him after the year. He's hoping she will too.
We also learned that they will harvest her marrow on the morning of his transplant and it is delivered by courier from whatever far away location she is in. Wherever it is, in this whole wide world!
She does not come to us, only her marrow, via courier, does the traveling. Wow!
A good friend sent us a link to an article detailing what this whole experience is like, from the donor's point of view. This particular donor is a journalist and wrote about the process from his point of view. 
Here's a link to the article.
It's really quite interesting knowing what's happening on that end.
We know all too well what's happening on this end. 

As the transplant day rapidly approaches, we once again thank you all for your prayers, positive thoughts, well wishes and love.
Keep 'em coming. 
As a matter of fact, maybe double up on them.
The rubber is about to meet the road.
Thanks everyone!           

Today's numbers:
Hemoglobin- 8.6 (decrease, no transfusion)
Platelets- 10 (decrease, transfusion 1 unit)
Neutrophils- 2.22 (increase, No Neupogen)
White Blood Count- 3.40 (increase)

Neupogen at home tomorrow.
Incision is healing. No problems with bleeding. 

Today's numbers: 
Hemoglobin- 9.5 (increase, no transfusion)
Platelets- 13 (decrease, transfusion 2 units)
Neutrophils- 2.21 (increase, No Neupogen)
White Blood Count- 3.30 (increase)

Neupogen at home tomorrow.
Incision is doing well. 

Today's numbers: 
Hemoglobin- 7.8 (increase, transfusion 2 units prc)
Platelets- 26 (increase, transfusion 1 unit)
Neutrophils- 1.78 (decrease,  Neupogen at home today)
White Blood Count- 2.87 (decrease)

So far, so good.
His incision looks fine and has not had any issues with bleeding.

No labs today.
B had his Mohs surgery this morning to remove the squamous cell lesion on his back.
Took three go rounds to get all the cancer, but it's gone.
He now has a 3" incision that I hope to be able to keep from bleeding and getting infected these next few days.  
We've been watching this growth for almost a year, but because of all the other issues that B has been dealing with, it was put on the back burner.
The Docs wanted to get it done pre-Bone Marrow Transplant.
B is glad that it's been taken care of finally.  

Today's numbers:
Hemoglobin- 8.5 (decrease, no transfusion)
Platelets- 10 (decrease, transfusion 3 units)
Neutrophils- 2.26 (increase,  Neupogen at home today)
White Blood Count- 3.39 (increase)

Tomorrow B has Mohs surgery to remove a good size squamous cell lesion on his back.
Because of how much he bled from just the tiny biopsy last Thursday, Doc Chen gave him extra platelets today to help control the bleeding that might occur during tomorrow's surgery.
Fingers crossed.

Today's numbers:
Hemoglobin- 9.1 (increase, no transfusion)
Platelets- 4 (decrease, transfusion 2 units)
Neutrophils- 1.98 (increase,  Neupogen at home today)
White Blood Count- 3.34 (increase)

Hemoglobin- 8.7 (decrease, no transfusion)
Platelets- 69 (increase)
Neutrophils- 1.39 (decrease,  Neupogen at home today)
White Blood Count- 3.01 (decrease)

We don't usually get two sets of labs done on one day, but today it was needed.
B had a biopsy yesterday on a suspicious skin lesion. (Positive for squamous cell dang it)
And, when he woke up this morning I discovered he had bled quite a bit during the night from the biopsy site. His morning platelet count of 4 explains the bleeding, but that low count of just 4 platelets, despite a Wednesday transfusion, was a concern. So we had post-platelet transfusion labs done to see if he actually would show improvement in his platelet numbers.

There is a potential complication for some folks who get multiple platelet transfusions called platelet refractoriness. When this happens, the body basically doesn't respond to platelet transfusions, and there is no benefit from a platelet infusion. This is a very dangerous complication.
And, because Wednesday's platelet transfusion's staying power seemed dismal, post transfusion labs were ordered to see if he may have developed this complication. The labs needed to show he had indeed gotten a bump in his numbers from today's platelets.
Thankfully, he did respond with an increased platelet count, post transfusion.
And, the bleeding from his biopsy did subside.

Today was also our first experience getting a transfusion since our beloved Ambulatory unit closed Wednesday.  
Today, the main hospital's out-patient surgery center took care of B's transfusion needs. It was a longer wait, but we were delighted to see a few of our regular nurses there. Terese and Donetta took care of him, and we saw Sally and Yvonne as well.
As a matter of fact, B had also bled quite a bit from his PICC line site, saturating his dressing and it was Donetta who felt a bit uneasy about doing a dressing change until she knew his platelets were sticking.
So, we discussed it and I told her I'd text Doc Chen to see if we could get post-platelet afternoon labs done and let the nurses at Az Oncology do the dressing change if the platelet counts were good. Doc Chen agreed and that's what we did.

The out-patient surgery center will take care of B's next transfusion, but after that, we don't know where we will be going. 
We are trying to stay even keel and not let these uncertainties distress us, but that's a lot easier said than done in this stressful pre-Bone Marrow Transplant period.
Today's events, the bleeding, the new transfusion location, and the stress of worry about a potentially fatal platelet complication, took it's toll on both of us. We were emotionally and physically exhausted this evening.

I think B's Bone Marrow transplant is happening just in the nick of time. I know that today, while waiting for the post transfusion lab results, we were scared B may have run out of runway, and that he might not make it to the transplant if indeed he had developed platelet refractoriness. This complication would have been the set up for that 'fatal bleed' that Dr.Schriber talked about in our first consultation with him about a Bone Marrow Transplant.
Today's events made B a bit more comfortable with his decision to have the transplant. 

JANUARY 9-Wednesday-
Today's numbers:
Hemoglobin- 7.7 (decrease, transfusion 2 units prc)
Platelets- 15 (decrease, transfusion 1 unit)
Neutrophils- 1.88 (decrease,  Neupogen at home today)
White Blood Count- 2.94 (decrease)

Today we learned that B's Ambulatory transfusion center is closing.
As a matter of fact, B was their last patient this afternoon.
We and the nurses were on the brink of tears throughout the transfusion today, both because they were uncertain about their futures from a job perspective, and because we realized that our yearlong routine was ending.
These amazing girls have made a difficult, thrice weekly process manageable for B and me. They take care of a lot of patients and the nature of their work (many of their cancer folks pass on), probably requires that they don't get too emotionally invested or they would be grieving all the time, but, because of how often and how long we've been doing this, we have become friends. And we are going to miss them a lot.
So, B and I want to say thank you to all of them.
Thanks for the laughs, the care, the diligence to get it right, the warm blankets, the laughs, and the comfort.
You have made it so much easier for B to endure this last year.
Terese, Sallie, Donetta, Sally, Yvonne, Linh, Robin, and Susanne, you are all the best and you will be forever in our hearts. We will miss you.

JANUARY 7-Monday-
Today's numbers:
Hemoglobin- 8.4 (increase, no transfusion)
Platelets- 6 (decrease, transfusion 2 units)
Neutrophils- 1.93 (decrease,  Neupogen at home today)
White Blood Count- 3.10 (decrease)

Well, we got THE phone call this evening from the transplant coordinator.
The transplant team has set a date.
First, they run it by us to see if it will work for B, then they will contact the donor to see if the date will work for her.
We agreed with the schedule they have mapped out and now we wait to hear from the donor.
The Doc wants to use actual bone marrow, instead of stem cells, so there's a chance the donor might not go along with this. Bone marrow harvest is tougher on the donor than stem cell harvest, so who knows what she will agree to. 
I'll will do my best to keep everyone informed, but can't guarantee I will have the time to keep this blog page up to date.
There's a bunch to do before we get started.   

JANUARY 4-Friday-
Today's numbers:
Hemoglobin- 8.0 (decrease, transfusion 1 unit prc)
Platelets- 10 (decrease, transfusion 2 units)
Neutrophils- 2.03 (increase, No Neupogen)
White Blood Count- 3.28 (increase)

Neupogen at home on Sunday.

JANUARY 3-Thursday-
Today's numbers:
No labs today.

B had his PICC line replaced today. It went smoothly and he's really glad that it's over and done with.
He was angsting a bit over it.

JANUARY 2-Wednesday-
Today's numbers:
Hemoglobin- 8.6 (decrease, no transfusion)
Platelets- 14 (decrease, transfusion 1 unit)
Neutrophils- 1.60 (decrease,  Neupogen at home)
White Blood Count- 2.70 (decrease)

Monday I discussed with Doc Chen something I had seen on the PET scan report she gave us last month.
The report noted that B's PICC line had become misplaced and was now terminating in a subclavian vein instead of the correct vein. It said that an adjustment was recommended. She had missed that on the report and was glad I brought it to her attention.    
She said that B would need to have this corrected.
So Thursday, he is scheduled for a PICC line replacement.
He's not a happy camper, but it needs to be done. A misplaced PICC line can lead to blood clots.
Don't need any unnecessary issues. 

On a different note, my big brother Richard went home this morning and took our 17 year old granddaughter with him to finish her senior year in Durango, Co. 
I am excited for her, but will miss them both like crazy.
Richard and B have had tons of fun playing video games this whole week.
I think B will miss Richard too, and I know he will miss L.    

DECEMBER 31-Monday-
Today's numbers:
Hemoglobin- 9.4 (increase, no transfusion)
Platelets- 15 (decrease, transfusion 1 unit)
Neutrophils- 3.17 (decrease, No Neupogen)
White Blood Count- 4.50 (decrease)
Happy New Year's Eve everyone.
B's labs this morning showed he needed one unit of platelets today. Just as last week, we were in and out of NW Hospital's ER in about 4 hours with no issues, so we are ready to ring in the New Year tonight.
We got an early present last week, the Friday before Christmas.
A bone marrow donor has been found and she's a 10 out of 10 match! 
The Docs say they suspect we will proceed with the Bone Marrow Transplant soon, but we don't have any dates or schedule yet.
Scary stuff. Exciting stuff.   
Here's hoping this New Year brings good health back to B.

DECEMBER 28-Friday-
Today's numbers:
Hemoglobin- 8.1 (increase, transfusion 1 unit)
Platelets- 10 (decrease, transfusion 2 units)
Neutrophils- 3.74 (increase, No Neupogen)
White Blood Count- 5.26 (increase)

Just like last week, NW Ambulatory will be closed for 4 days because of the New Year's holiday.
AZ Oncology will be open New Year's Eve day, so we will get early morning labs done there then I suspect that we will be visiting the ER again for platelets to get him through New Years Day.
I will give him Neupogen at home on Sunday. 

DECEMBER 26-Wednesday-
Today's numbers:
Hemoglobin- 8.7 (decrease, no transfusion)
Platelets- 20 (increase, transfusion 1 unit)
Neutrophils- 1.78 (decrease, Neupogen at home today)
White Blood Count- 3.02 (decrease)

Type/cross for red cells Friday.
Uncle Richard arrives tonight for his Christmas visit. 
I sure do need a great big dose of hugs from my big brother. 

DECEMBER 24-Monday-
Today's numbers:
Hemoglobin- 9.4 (increase, no transfusion)
Platelets- 11 (decrease, transfusion 1 unit at ER)
Neutrophils- 3.83 (increase, No Neupogen)
White Blood Count- 5.24 (increase)

Happy Christmas Eve everyone.
B's labs this morning showed he needed one unit of platelets today. We were in and out of NW Hospital's ER in about 4 hours with no issues, so we are ready for a nice Christmas tomorrow. 

DECEMBER 21-Friday-
Today's numbers:
Hemoglobin- 8.0 (decrease, transfusion 2 units prc)
Platelets- 24 (decrease, transfusion 2 units)
Neutrophils- 2.26 (decrease, No Neupogen)
White Blood Count- 3.64 (decrease)

The Ambulatory unit of NW Hospital, where B gets his transfusions, will be closed for 4 days because of the Christmas holiday.
Today, the Doc is giving him extra transfusions to hopefully get him through the long weekend, but I suspect, he will need an ER visit on Monday to get him through the holiday. Fortunately, Az Oncology will be open on Monday, Christmas Eve, so we will get the labs done there, then go on to the ER if necessary.
I will give him Neupogen at home, probably tomorrow.
One day at a time, one step at a time. 

DECEMBER 19-Wednesday-
Today's numbers:
Hemoglobin- 8.7 (increase, no transfusion)
Platelets- 29 (increase, transfusion 1 unit)
Neutrophils- 3.13 (decrease, No Neupogen)
White Blood Count- 4.52 (decrease)

DECEMBER 17-Monday-
Today's numbers:
Hemoglobin- 8.1 (decrease, transfusion 1 unit prc)
Platelets- 24 (increase, transfusion 1 unit)
Neutrophils- 11.0 (increase, No Neupogen)
White Blood Count- 12.90 (increase)

DECEMBER 14-Friday-
Today's numbers:
Hemoglobin- 8.5 (decrease, no transfusion)
Platelets- 13 (decrease, transfusion 2 units)
Neutrophils- 4.60 (increase, No Neupogen)
White Blood Count- 6.09 (increase)

Do Neupogen at home on Sunday 12/16.

DECEMBER 12 (yes, 12-12-2012)-Wednesday-
Today's numbers:
Hemoglobin- 8.0 (decrease, transfusion 1 unit prbc)
Platelets- 31 (increase, no transfusion)
Neutrophils- 2.22 (decrease, Neupogen at home tonight)
White Blood Count- 3.40 (decrease)

Went in for routine labs this morning and Doc Chen gave us Monday's PET scan results.
Just scar tissue in the lung.
NO sign of cancerous tumors anywhere!

He still has MyeloDysplastic Syndrome, the disease of his bone marrow, but he doesn't have any tumors or active Non-Hodgkins Lymphoma.
This is amazing, great news!
We are very happy campers today.    

DECEMBER 10-Monday-
Today's numbers:
Hemoglobin- 8.8 (increase, no transfusion)
Platelets- 11 (decrease, transfusion 2 units)
Neutrophils- 5.80 (increase, No Neupogen)
White Blood Count- 7.18 (increase)

B had a bloody nose yesterday that took a while to stop. 
We were prepared to go to the ER if we couldn't get under control, but it did finally stop after about a half hour. It wasn't a gusher or anything, so we felt safe with our decision to give it some time to stop.
It worked out fine. 
We told Doc Chen and she order an extra unit of platelets this morning to be on the safe side if the nose were to start bleeding again today. 
Also today, B had his PET scan.
Sure nervous about this. Should hear the results within a day or two.

DECEMBER 7-Friday-
Today's numbers:
Hemoglobin- 8.0 (decrease, transfusion 2 ? units prbc)
Platelets- 18 (increase, transfusion 1 unit)
Neutrophils- 1.81 (decrease, Neupogen at home Sunday)
White Blood Count- 3.13 (decrease)

DECEMBER 5-Wednesday-
Today's numbers:
Hemoglobin- 8.5 (increase, no transfusion)
Platelets- 15 (increase, transfusion 1 unit)
Neutrophils- 5.15 (decrease, No Neupogen)
White Blood Count- 6.50 (decrease)

In Monday's weekly physical examination, Doc Chen found a swollen lymph node under B's arm so she wants him to have a PET scan.
We've avoided B's having a PET scan for quite a long time now. Doc wanted him to have one last spring, but our reasoning to not have one was,  if they found something yukky, B would not be able to treat it, so why go there. I know, that a 'stick your head in the sand' approach, but we were good with that.
But now, at Doc Chen's urging, B is going to go ahead and have one.
Not sure what we'll do with whatever it finds, but with the Bone Marrow Transplant just around the horizon, it will be better to have all the facts beforehand to achieve the best possible outcome for B.
It's scheduled for next Monday.

DECEMBER 3-Monday-
Today's numbers:
Hemoglobin- 8.0 (decrease, transfusion 1 unit prbc)
Platelets- 14 (decrease, transfusion 1 unit)
Neutrophils- 7.80 (increase, No Neupogen)
White Blood Count- 9.44 (increase)

We got disappointing news from the Bone Marrow Transplant coordinator.
B's brother J has an issue and is harboring a potentially dangerous illness that could be passed on to B during the transplant process. 
The illness is dormant in J, but if it is passed on to B while B's immune system is at zero, it would become an active and (deadly) illness in B. 
So, no go for J.
I don't know which brother is more disappointed. J really wanted to be able to do this for B and he's so upset his marrow can't be used. And of course, B was hoping J would be the one, for more reasons than one. First, because J was a perfect match,  and second, because he knew how much J wanted to be able to help out.
But, it's not to be.
In the meantime, the Transplant coordinator let us know that the intial list of 10 potential  donor 'hits' has doubled to 20. That's good news.
Here's hoping over the few next weeks/months one of those on the list will turn out to be a 10 out of 10 DNA match and we'll get back on schedule.

NOVEMBER 30-Friday-
Today's numbers:
Hemoglobin- 9.1 (decrease, no transfusion)
Platelets- 25 (increase, transfusion 1 unit)
Neutrophils- 2.19 (decrease, No Neupogen)
White Blood Count- 3.60 (decrease)
Neupogen on Sunday at home.
1 unit of platelets today to get through the weekend.

NOVEMBER 29-Thursday-
Today's numbers: 
No labs today.(at least for B)

We took B's brother J to meet with the transplant specialists today. 
He had to have a bunch of labs done to further assess his bone marrow donor chances. He's genetically a 100% match, but to be sure he's not harboring an illness that could be passed on to B through the transplant, he's undergoing a battery of blood tests. 
I think he said they took 16 vials of blood.
We should find out the results next week. 
There is potentially a dormant issue with J that the Doc's are concerned about, so just in case J won't be an eligible donor, Doc Schriber ran B's name through the National Bone Marrow registry to see if there may be an unrelated donor available.
The search got 10 potential 'hits'.
While that sounds good, there are many factors that could narrow that list down quick.
Perhaps, since the donor originally registered, they have moved and can't be located, or...they changed their mind, or...they are now sick themselves with something that would disqualify them, ...or ?. 
Then, of those that are left on the list, perhaps they meet less than the 9 out of 10 DNA match criteria that's required to actually be a donor for B.
B needs a 10 out of 10 DNA match criteria, from the unrelated donor. 
So, as you can see,  it will take some luck to have one of these original 10 donor 'hits' be a good candidate if we need to go this route. 
Here's hoping J's healthy enough. 
NOVEMBER 28-Wednesday-
Today's numbers:
Hemoglobin- 10.0 (increase, no transfusion)
Platelets- 10 (decrease, transfusion 1 unit)
Neutrophils- 3.51 (decrease, No Neupogen)
White Blood Count- 5.51 (decrease)

The diuretics have finally started working. B's lost 8 lbs since Monday (yes, 8 lbs in two days!) and he's feeling much better!!
He's breathing much better, has more energy and his sinus tachycardia is gone. 

NOVEMBER 27-Tuesday-
Today's numbers:
No labs today.
Today we went to see our transplant specialist Doc Schriber again.
It was a very good visit, with mostly good news.
First, B passed all the preliminary tests well enough to still be considered a Bone Marrow Transplant candidate. I think he squeaked by on a few, and that will definitely make the transplant more of a challenge, but he hasn't been told no go. B was sure he'd failed the PFT, so he was happy to hear he hadn't.
At our first visit Bone Marrow Transplant consultation with Doc Schriber on Oct 25 (which was full of bad news), he noted that it had been 6+ months since B's last Bone Marrow Biopsy (April). He ordered a new one so he could get an idea of where B's MDS stands now and how much the MDS may have progressed these last 6+ months.
More good news. The bone marrow biopsy results were promising. No, B's marrow isn't waking up, but it's not gotten much worse either. And it's missing stuff that the Doc was very happy to see missing.
Like blast cells. And chromosome changes. 
As a matter of fact, he's puzzled by the results. He tells us B falls between two different diseases. MyeloDysplastic Syndrome and  Aplastic anemia.
He's says he's going to discuss B's unusual illness with other 'very smart' Docs to help decide what he wants to do. 
Unfortunately, both of these conditions are only cured by a Bone Marrow Transplant, so that's still on the table, but the fact the MDS has not yet morphed into Leukemia is a very good thing. The Doc said he was sort of expecting that could have happened these last 6 months and was very glad to see it hadn't. 
What this all means is we have some extra time before jumping into transplant mode. 
So Doc Schriber wants us to wait until after Christmas!
I have to say, I wasn't looking forward to a Christmas Bone Marrow Transplant
We were ready to do it, but I was nervous about hospital staffing and stuff during the holidays and, I have to admit, I've always been superstitious about doing anything major in a medical way at Christmastime. Just don't like it.
So, I'm very pleased.
And more importantly, so is B. He's looking forward to being able to play more music and visit with friends throughout this next month. 
So I'm thinking a few Sunday afternoon, pot-o-chili, musical jams at the house will be just the ticket to let him do that just that. 
I'll keep you posted.

NOVEMBER 26-Monday-
Today's numbers:
Hemoglobin- 8.3 (decrease, transfusion 1 unit prbc)
Platelets- 16 (increase, transfusion 1 unit)
Neutrophils- 7.10 (big increase, No Neupogen)
White Blood Count- 8.80 (big increase)

Weekly visit with Doc Chen this morning. We let her know that last week's Lasix infusions and pills weren't working very good, if at all. The swelling hasn't diminished at all.
So she upped the doses. Lasix infusions will be 40mg now. And she wants me to double the dose of the pills at home as well.
This fluid retention is beating B up. It's causing him to be very short of breath, very tired and his sinus tachycardia is back.
Fingers crossed these extra meds will work.

NOVEMBER 24-Saturday-
Today's numbers:
Hemoglobin- 9.3 (increase, no transfusion)
Platelets- 13 (decrease, transfusion 1 unit)
Neutrophils- 2.7 (decrease, No Neupogen)
White Blood Count- 4.2 (decrease)

We went to NW Hospital's lab this morning to make sure B's blood counts were still okay. As expected, his platelet count had dropped dramatically so he got a unit of those through the hospital's ER.
His other counts were fine. I am scheduled to give him a Neupogen shot on Sunday, so his immune system should stay fine too.
Whew. Looks like we are going to smoothly negotiate the long holiday weekend without any glitches.
Fingers crossed.

NOVEMBER 21-Wednesday-
Today's numbers:
Hemoglobin- 9.0 (increase, transfusion 1 unit prbc)
Platelets- 40 (decrease, transfusion 1 unit)
Neutrophils- 8.55 (increase, No Neupogen)
White Blood Count- 10.38 (increase)

We've spent the first 3 days of this week trying to build up B's blood counts with multiple transfusions to hopefully get him through the long 4 day holiday weekend.
NW Ambulatory, where B gets his regular blood transfusions, will be closed for 4 days (Thurs-Sun) and since B gets a blood transfusion just about every other day, negotiating 4 days without their services will be tricky.
Arizona Oncology is also closed those 4 days, so if we have any issues, they will need to be addressed through the hospital's ER.
We have made arrangements to get labs drawn at NW Hospital on Saturday morning, so if he's running low on platelets or hemoglobin, he will get his transfusions in the ER.
Hopefully, his counts will hold, but I'm thinking the platelets will probably not make it 'til Monday because they have a very short lifespan. We'll see.
B's had issues with edema lately, especially in his ankles, feet and stomach area. This started around Nov 9th. He gained a pound a day of water weight for 10 straight days.
A CT scan of his lungs last week also shows a right pleural effusion (fluid around his lung). It can't be removed by needle aspiration because of his platelets, so we're hoping the diuretics will get rid of this excess fluid.
Thankfully, a comprehensive metabolic panel bloodwork lab (done yesterday) shows his kidneys are okay. So far the diuretics (Lasix) aren't bringing the swelling down much in his feet, ankles and trunk and I bet the fluid around his lungs hasn't diminished much either.
He's getting Lasix infusions via IV after transfusions, and I've been giving him diuretic pills here at home.
I sure hope these diuretics start working soon.
It's not good for him to be retaining water like this. Hard on his already hardworking heart. Chronic low hemoglobin counts also put strain on his heart. We need him to be as strong as possible going into the BMT, so I know these issues of water retention will need to be resolved soon.

NOVEMBER 20-Tuesday-
Today's numbers:
Hemoglobin- 8.2 (decrease, transfusion 1 unit prbc)
Platelets- 76 (increase, no transfusion)
Neutrophils- 2.51 (decrease, Neupogen today at home)
White Blood Count- 4.07 (increase)

We got a call late yesterday afternoon from the Bone Marrow Transplant coordinator letting us know that B's brother J was a 100% match!
His sister S, who also was tested to see if she could be a donor, was not a match. We can't thank them enough for stepping up, offering without hesitation their marrow, if it will help their brother.
J has a few more tests to go through to make sure he's not carrying anything yukky that he could pass on to B through transplant, but the first box in the process has a check mark in it. Find a match. Check.

I asked the transplant coordinator, if J's additional screening checks out okay, what kind of schedule were they thinking about to do this transplant.
My question went something like this:
Ah, I was just wondering, with the holiday just around the corner and all, should I get our Christmas tree down from the attic?”
She answered “No.”
That means that within a few weeks, B could possibly be starting the Bone Marrow Transplant portion of his journey. That's quick.
Double gulp.

We told Doc Chen today. (Rescheduled appt. after having to cancel yesterday's because of the ER visit) She got very, very excited about the sibling match.

We are excited too. And terrified. The mix of emotions we are feeling is like riding a roller coaster.
Up and down. Happy. Scared stiff. Hopeful. Frightened beyond belief.
It's becoming more real. Our conversations have become more intense, filled with life and death stuff.
I've made it clear to B that this is his decision and his only.
He shouldn't let what he thinks others might want him to do influence him one bit. None of us, not me, not his siblings, not his other family members or friends are walking in these shoes he's wearing.
Unless we're wearing those shoes, we can't begin to know how to make a decision like this. All we can do is offer our 100% support for whatever he chooses.

NOVEMBER 19-Monday-
Today's numbers:
Hemoglobin- 8.6 (decrease, no transfusion)
Platelets- 14 (decrease, transfusion today 2 units)
Neutrophils- 2.9 (increase, No Neupogen today)
White Blood Count- 3.8 (increase)

B got carsick this morning. A handful of morning meds, lots of stop and go traffic coupled with River Road's bends and curves did a number on B's stomach.
After he finished losing his breakfast in Arizona Oncology's parking lot, he raised his head and much to my alarm, his entire face had erupted with petechiae and purpura. This a condition where the small blood vessels just under the skin burst, causing reddish purple spots and bruises. Low platelets are the cause. Losing his breakfast must have created pressure in his face and the result was scary. 
I told him not to move while I ran and got a triage nurse. She came out, took one look at him and told me to get him to the ER right away. They were going to call an ambulance but we convinced them I could drive the block and a half to the ER. It's almost right next door to the Oncology office.
They were concerned that the bleeding that had happened in his face, could also be happening in his head or brain. A CT scan revealed no internal bleeds (whew), so we got back on our routine schedule, and B got some much needed platelets.
He looks like he was beaten up. He's telling everyone they should see the other guy. He always faces setbacks with a sense of humor and a few good one liners.
I adore this man. He inspires me in so many ways, large and small, and I thank God for every day that I have been able to share my life with him.
Just sayin'.

NOVEMBER 16-Friday-
Today's numbers:
Hemoglobin- 8.2 (increase, transfusion 1 unit prbc)
Platelets- 19 (decrease, transfusion today 1 unit)
Neutrophils- 1.59 (decrease, Neupogen today)
White Blood Count- 2.60 (decrease)

NOVEMBER 14-Wednesday-
Today's numbers:
Hemoglobin- 7.7 (decrease, transfusion 1 prbc)
Platelets- 23 (increase, transfusion today 1 unit)
Neutrophils- 2.62 (increase, No Neupogen today)
White Blood Count- 4.13 (increase)

NOVEMBER 12-Monday-
Today's numbers:
Hemoglobin- 8.8 (increase, no transfusion)
Platelets- 5 (decrease, transfusion today 2 units)
Neutrophils- 1.97 (decrease, Neupogen today)
White Blood Count- 3.20 (decrease)

Ever since the consultation with Dr. Schriber, the Bone Marrow Transplant specialist, B seems to have taken a turn for the worse. Strength wise. He's just not as strong physically as he was before the consult.
The reality of what he faces is overwhelming and it's weighing heavily on him.
His MDS, if untreated = 100% chance of death, sooner than later, from complications that come with the low blood counts he has. The Doc said it's not a question of if, but when one of these low counts will produces a catastrophic event.
Low platelets= possible fatal brain or other internal bleed.
Low white count= possible uncontrollable infection.
Low hemoglobin= too much stress on B's heart.

If he opts for and has a donor for the Bone Marrow Transplant, he faces a 35-40% chance of death within the first year, especially the first 100 days of that year.
And the Bone Marrow Transplant itself is a brutal process. He will have to get much sicker for a chance at getting better.

His loss of strength may also be attributed to the terrible chest cough this last 6 weeks or so. I know that's taking it's toll too. We're in the process of figuring out what is causing this cough. Antibiotics have not made it any better, so a CT scan and other tests are being run.
He's afraid he will be disqualified from being a Bone Marrow Transplant recipient because of this lung issue.
He has a gauntlet of tests to pass before he can be given the green light for a Bone Marrow Transplant and he thinks he failed the Pulmonary Function Test he did last week. We haven't gotten any indication yet from the docs if he failed it.
If he indeed did fail it, I will question if this cough might have something to do with this and ask if he could retake the test once the cough's resolved. We'll see. He may not have failed it.

There are 3 big questions that need answering before moving forward with the Bone Marrow Transplant.
1- Is he healthy enough to endure the transplant treatment?
The Docs and a Transplant Board will go over the results of all the heart, lung and metabolic tests to see if he's strong enough. (Most of these tests have been completed, just the heart test is left to do this week.)
2- Will he find a donor?
His two full siblings had blood drawn last week to see if they are a donor match for B.
We expect those results this week. In fact, this week we may also hear if there is someone on the National Registry who could be a match.
3- Will insurance cover the cost?
After a rocky start, with United Healthcare initially denying B's choice of Dr. Schriber and his hospital/transplant team, through appeal we have been granted permission to use them.

We are fast approaching the one year mark of almost losing B last Thanksgiving. It seems like yesterday. And a lifetime ago.
And it's been quite a year for him. He's endured so much, and still keeps on fighting, with little or no complaints. In fact, I have to watch him vigilantly for signs of that something's amiss because he just doesn't complain.
I've never known anyone with a spirit like his, so strong, so brave.

NOVEMBER 9-Friday-
Today's numbers:
Hemoglobin- 8.4 (increase, transfusion 1 unit)
Platelets- 10 (same, transfusion today 1 unit)
Neutrophils- 2.66 (increase, Neupogen today)
White Blood Count- 3.89 (increase)

NOVEMBER 7-Wednesday-
Today's numbers:
Hemoglobin- 7.9 (increase, transfusion 1 unit)
Platelets- 10 (same, transfusion today 1 unit)
Neutrophils- 2.87 (increase, Neupogen today)
White Blood Count- 3.81 (increase)

NOVEMBER 5-Monday-
Today's numbers:
Hemoglobin- 7.5 (decrease, transfusion 1 unit)
Platelets- 10 (decrease, transfusion today 1 unit)
Neutrophils- 1.52 (decrease, Neupogen today)
White Blood Count- 2.84 (decrease)

NOVEMBER 5-Monday-
Today's numbers:
Hemoglobin- 7.5 (decrease, transfusion 1 unit)
Platelets- 10 (decrease, transfusion today 1 unit)
Neutrophils- 1.52 (decrease, Neupogen today)
White Blood Count- 2.84 (decrease)

NOVEMBER 2-Friday-
Today's numbers:
Hemoglobin- 8.4 (increase, no transfusion)
Platelets- 13 (decrease, transfusion today 1 unit)
Neutrophils- 2.04 (increase, Neupogen today)
White Blood Count- 3.19 (increase)

OCTOBER 31-Wednesday-
Today's numbers:
Hemoglobin- 7.9 (increase, transfusion 1 unit)
Platelets- 15 (decrease, transfusion today 1 unit)
Neutrophils- 1.41 (increase, Neupogen today)
White Blood Count- 3.00 (increase)

OCTOBER 29-Monday-
Today's numbers:
Hemoglobin- 7.4 (decrease, transfusion 1 unit)
Platelets-16 (decrease, transfusion today 1 unit)
Neutrophils- 1.20 (decrease, Neupogen today)
White Blood Count- 2.38 (decrease)

OCTOBER 26-Friday-
Today's numbers:
Hemoglobin- 8.6 (no transfusion)
Platelets-21 (increase, transfusion today 1 unit)
Neutrophils- 1.26 (decrease, Neupogen today)
White Blood Count- 2.49 (decrease)

OCTOBER 25-Thursday-
Bone Marrow Transplant consultation.
Today we had to take our heads out of the sand.
These last 5 months post Vidaza, we have settled into the supportive transfusion care therapy routine. No chemo or other aggressive therapies to address treating the mds, instead we opted for giving B a chance to recover a bit from the side effects of the Vidaza.
And it's been nice. He's been recovering some of his strength, a bit of an appetite, and most importantly, he's been able to play his U-Bass with friends, both at home and out and about. Quite a bit.
Granted, the transfusions have been many, but manageable.

I had mentioned in my previous summary above, we didn't really know what untreated mds and supportive transfusion care looked like in the long term. But we just didn't go there mentally, instead we stayed in the now, celebrating the hours and days that B felt okay.
Until today.
Today we got a serious reality check.
At our first consultation with Dr.Schriber, the bone marrow transplant specialist that Doc Chen recommended, he basically said that B was running out of runway. Between a rock and hard place.
That it was just a matter of time, and in his opinion, not a great deal of time, before B was going to have a serious brain bleed. Or get an infection that would not respond to antibiotics.
He basically said, that while, the Bone Marrow Transplant had a 35-40% fatality rate for someone like B, the road he was on had a 100% fatality rate. Sooner than later.
He seriously recommended B consider the Bone Marrow Transplant.
Scary stuff.

So, the process has begun.
There are many, many obstacles to overcome just to get to the decision to do it or not. This is a process that could take months (or years if no donor is found right away).
First, B has to pass physical criteria to determine if he's even a viable candidate. Then a transplant board will meet a some point to go over all his info and make the call. Go or no go.
His heart, lung, liver, and kidney function all play a big role in that determination so next week he will begin tests to measure if they are up to the task. They have a scoring system that helps them determine a candidate's chances for a successful outcome, and if you score poorly, they may say no go.
Second, if he does score well enough to go ahead, he then needs to find a donor that matches.

Doc Schriber's team have begun the search, getting B's DNA profile into the national registry.
He has two full siblings, both of who have agreed to be tested to see if they may be the match.
There's a 25% chance one of them will be an initial match, at which time further testing will be done to see if they meet the additional criteria necessary for a successful outcome.

Since this consultation and finding out how precarious the situation is, B's demeanor has definitely become more subdued.
I feel like we aren't just watching a scary movie, we are in it, and there's no way to look away or cover our eyes.
What's ahead is beyond scary and we are both trying to digest this latest news.
We need to go into this with wide open eyes, weighing all possibilities. And while I keep saying 'we', the ultimate decision will be up to B. I will support any decision he makes. And I will be with him every step of the way.
The Bone Marrow Transplant has a 35-40% chance he will die. Within the first 100 days.
But if he survives, he has a 30% chance of a complete cure, with the rest of the percentages encompassing everything from improvement in bone marrow function that could last years to relapse within the first year, with no long term improvement at all.
But no transplant is apparently just living on borrowed time, waiting for the catastrophic event that's sure to occur. He doesn't have years to live with the no transplant scenario.

OCTOBER 24-Wednesday-
Today's numbers:
Hemoglobin- 7.5 (decrease, transfusion 1 unit)
Platelets-15 (increase, transfusion today 1 unit)
Neutrophils- 3.35 (increase, No Neupogen today)
White Blood Count- 4.54 (increase)

Cross/type for possible Friday red cell transfusion. (Did not need.)

OCTOBER 22-Monday-
Today's numbers:
Hemoglobin- 8.1 (increase, no transfusion)
Platelets-12 (decrease, transfusion today 1 unit)
Neutrophils- 1.15 (decrease, Neupogen today)
White Blood Count- 2.20 (decrease)

Cross/type for Wednesday red cell transfusion.

OCTOBER 19-Friday-
Today's numbers:
Hemoglobin- 7.9 (increase, transfusion 1 unit)
Platelets-16 (increase, transfusion today 1 unit)
Neutrophils- 3.27 (increase, No Neupogen today)
White Blood Count- 4.45 (increase)

OCTOBER 18-Thursday-
Our precious Sheltie, Annie, died suddenly this morning.
We are devastated.

OCTOBER 17-Wednesday-
Today's numbers:
Hemoglobin- 8.4 (decrease, no transfusion)
Platelets- 8 (decrease, transfusion today 1 unit)
Neutrophils- 1.19 (decrease, Neupogen today)
White Blood Count- 2.13 (decrease)

Cross/type for Friday red cell transfusion.
Lunch with Casey for her birthday.

OCTOBER 15-Monday-
Today's numbers:
Hemoglobin 8.7 (decrease, no transfusion)
Platelets- 4 (decrease, transfusion today 1 unit)
Neutrophils- 3.47 (increase, No Neupogen today)
White Blood Count- 4.64 (increase)

OCTOBER 11-Thursday-
Today's numbers:
Hemoglobin- 9.9 (increase, no transfusion)
Platelets-15 (decrease, transfusion today 2 units)
Neutrophils- 1.11 (increase, Neupogen today)
White Blood Count- 2.15 (increase)

Neupogen today. I will do on Friday and Sunday to keep counts up through weekend.

OCTOBER 10-Wednesday-
Today's numbers:
Hemoglobin- 9.0 (increase,1 unit prc today)
Platelets- 5 (decrease, transfusion today 1 unit)
Neutrophils- 0.80 (increase, Neupogen today)
White Blood Count- 2.21 (increase)

OCTOBER 8-Monday-
Today's numbers:
Hemoglobin- 8.3 (decrease, type/cross today, 1 unit prc today)
Platelets- 8 (decrease, transfusion today 1 unit)
Neutrophils- 0.18 (decrease, Neupogen today)
White Blood Count- 0.89 (decrease)

OCTOBER 5-Friday-
Today's numbers:
Hemoglobin- 8.8 (decrease)
Platelets- 10 (same, transfusion today 1 unit)
Neutrophils- 1.42 (increase, Neupogen today)
White Blood Count- 2.39 (increase)

OCTOBER 3-Wednesday-
Today's numbers:
Hemoglobin- 9.1 (increase)
Platelets- 10 (decrease, transfusion today 1 unit)
Neutrophils- .73 (decrease, Neupogen today)
White Blood Count- 1.43 (decrease)

OCTOBER 1-Monday-
Today's numbers:
Hemoglobin- 8.0 (decrease, transfusion 1 or 2 units) ?
Platelets- 27 (increase, no transfusion today)
Neutrophils- 2.24 (increase, Neupogen today)
White Blood Count- 2.92 (increase)

SEPTEMBER 28-Friday-
Today's numbers:
Hemoglobin- 9.0 (increase)
Platelets- 4 (decrease, transfusion today 2 units) ?
Neutrophils- 1.17 (decrease, Neupogen today)
White Blood Count- 2.07 (decrease)

SEPTEMBER 26-Wednesday-
Today's numbers:
Hemoglobin- 8.5 (decrease) transfusion 1 unit
Platelets- 20 (increase, no transfusion today)
Neutrophils- 1.51 (decrease, No Neupogen today)
White Blood Count- 2.92 (decrease)

SEPTEMBER 24-Monday-
Today's numbers:
Hemoglobin- 8.6 (increase)
Platelets- 5 (decrease, transfusion today 1 unit)
Neutrophils- 3.68 (increase, No Neupogen today)
White Blood Count- 4.38 (increase)

SEPTEMBER 21-Friday-
Today's numbers:
Hemoglobin- 7.9 (decrease, 1 unit prc today)
Platelets- 29 (no transfusion today)
Neutrophils- 1.3 (decrease, Neupogen today)
White Blood Count- 2.3 (decrease)

To see B's Journey, Chapter One (January 10th, 2011-September 19th, 2012) please click here.
I've had to divide the B's Journey into Three Chapters because of technical issues with Blogger. 

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"There are days when I feel I could've painted the Sistine Chapel and, then, there are the days when I'm not sure I could trace a stick figure.... the only difference between these days is my state of mind"~ Jenna Millward Corkill