10-04-11

It has been four weeks since Bruce passed away, and I felt the need to write just a quick note to thank everyone again so much for all their support and best wishes.  I now know what an incredible help those heartfelt words are, what solace it brings to read the comments about Bruce and what he has meant to so many.

I ventured back to Johns Hopkins nearly two weeks ago, to thank Bruce’s doctors and nurses for their amazing care and concern.  We could not have asked for a better team – their dedication to Bruce and their other patients is truly astonishing.  

In going back to the hospital I was also, of course, looking for answers.  What happened that last day?  Why did he suddenly fail after having such a good day just the day before?  Unfortunately there were no hard and fast answers.  The doctors told me they often see patients rally one last time before the end.  They talked about his fragile state, how any one thing could have tipped the balance.   His oncologist told me his mental picture was Bruce’s baseball cap just swimming on his head – that Bruce just couldn’t gain back the weight and strength he needed after his transplant.   One of his pulmonologists said that Bruce was in incredibly hostile terrain – dealing with both the effect of the bone marrow transplant and his chronic GVHD.      

One thing I’ve learned all too well is that there so much that doctors simply don’t know and can’t predict, let alone control.   

So many people have told me that in reading the blog- they felt as though they had ventured along with us on this long journey.  And really – all of you have.  You’ve been there for the highs – and the lows.  You’ve been there with words of encouragement and hope and wisdom and humor.   As much as Bruce “gave” to others through the blog, he got back so much more from all of you.  He was humbled and honored at your comments and your concern. 

My children and I will join many others to walk in the Leukemia and Lymphoma Society’s “Light the Night” walk later this month.  We will think of Bruce and the brave fight he waged.  We will think of all of you, right there with us.

The words “Thank You” somehow seem insufficient, but know that I mean them from the bottom of my heart.

Love,

Lisa

 

09-07-11

Thank you so much for your heartfelt comments on the blog. 

Here’s a quick update with information about Bruce’s service and way to honor his memory:

 

 

Memorial Services For Bruce Dan:

1PM, Thursday, September 8^th, 2011

Washington Hebrew Congregation

3935 Macomb Street NW

Washington, DC.  20016

 

Our family has been planning for some time to participate in the Light the Night Walk for the

Leukemia and Lymphoma Society.  If you would like to make a donation in Bruce’s Memory, please follow the link below.

 

http://pages.lightthenight.org/nca/Montcomd11/teambbd

 

Donations can also be made to the National Marrow Donor Program.

09-07-11 Wednesday

 

My heart is broken as I write this.  I am so sorry to have to tell all of you our sad news in this way.

 

Tuesday night, at Johns Hopkins, Bruce passed away.  

 

He had seen his children on Friday- with love all around.  He and I spent a quiet and wonderful weekend, listening to his music.  He had his best day yet on Monday; even the doctors thought we were turning a corner. But his tired and weak body just couldn’t rally anymore. Bruce was peaceful and in no pain.

 

I know he would want me to thank all of you for the amazing support, and love, and words of encouragement since our journey began.  I thank you too. Bruce was never happier than when he was teaching and this blog allowed him to do that.  It sustained him through many tough months.  You all sustained him through many tough months. 

 

When I know about arrangements later today, I will let you know.

 

Thank you.

 

Love,

 

Lisa (and Bruce)

 9-02-11 Friday  +10 months  

 (From Lisa)

 A journey of a thousand miles begins with a single step. (Confucius)

Status:    Bruce remains off the ventilator and getting oxygen assists from a variety of devices.  Steps foward we hope. 

Events:   It has been a wild ride since Bruce came off the ventilator on Tuesday.  Tuesday night wasn’t great, and Wednesday night was even worse.  The doctors were playing musical masks trying to find something that he could tolerate and would deliver enough oxygen.  Bruce was exhausted; his oxygen levels were all over the map, and medicines to take the edge off were administered too late to work.

Finally yesterday afternoon we seemed to have hit pay dirt. The doctors found a BiPAP mask that fit well, delivered plenty of oxygen and he could live with.  Since then we’ve been on a calmer and more stable ride.

As mentioned before, the BiPAP mask delivers a punch of oxygen when Bruce breathes in and out.  The ultimate goal is to use this at night, with a more conventional oxygen mask during the day.  For the first time today, we made some progress toward that. Bruce was able to breathe well with a high-flow nasal cannula for nearly four hours. That was a big step for sure!

Today too the speech pathologists paid us a visit to give Bruce his swallow test.  After being intubated for so long, Bruce has to prove that he can swallow well enough to drink and eat, and have his NG (nasogastric) feeding tube removed. The test included coughing, trying to talk, swallowing a few bites of applesauce, among other exercises.   As anyone who knows Bruce knows, there is nary a test he hasn’t aced in his life.   Unfortunately he didn’t pass this one.  The speech pathologist felt his swallowing wasn’t quite consistent enough yet.  The worry is aspiration – without a good swallowing mechanism food and water can end up in the lung instead of the stomach.  So the feeding tube stays in until the next test on Tuesday. (The swallow folks don’t work on weekends or Labor Day apparently.)  He was able to swallow a small ice chip to their satisfaction, and to his utmost delight!  (I am sure it tasted like the finest champagne, after no water by mouth for weeks.)  So we have permission to down an ice chip now and again under strict conditions, such as the proper breathing rate, number of chips, etc. Bruce, of course, still has his priorities.  He managed to ask if it could be Italian Ices!  The answer was no.

Comments:   The goal of all this is to support Bruce’s breathing and his lungs while doctors continue to treat the CMV, and allow the lungs to heal as best they can.

As I have mentioned before, we have an amazing medical team.  Early on, I added a critical member of the team at the suggestion of two close friends who have been through the cancer battle with their loved ones.  They suggested I talk with palliative care .  The palliative care nurse told me that many patients have the misperception that palliative care is called in only near the end of life.  In fact, they work to reduce pain and stress during any point in a serious illness.   This nurse has been an amazing help, especially after Bruce’s miserable night Wednesday.  She agreed with me that this could not happen again, and worked out a plan with the doctors for drugs that will relax Bruce when necessary.  I hope none of you ever has to go through something like this, but if you do, you want these folks by your side.

Thanks to all of you for being by our side.  That has been a critical source of comfort as well.

Have a great holiday weekend.  I’ll update everyone on Tuesday. (Even bloggers get to take Labor Day off!)

 Love,

 Bruce (and Lisa)

8-31-11 Wednesday +10 months

(From Lisa)

If at first you don’t succeed, try, try again.

Status: Off the ventilator for the second attempt. After attempt number one did not work as expected, we are understandably more cautious this time about raising the victory flag.

Events: Bruce had great breathing trials over the weekend and on Monday, so yesterday the pulmonologists decided it was time to try to extubate again. The breathing tube came out and a mask went on.

Who knew there were so many ways to deliver oxygen? Let’s just say in the past 24 hours they have tried everything from nasal cannula, to light-weight nose and mouth oxygen masks, to heavy duty nose and mouth oxygen masks with straps surrounding the head. (Truly the Hannibal Lecter look.) Right now he’s relying on a very solid-looking nose-only mask with Velcro head straps holding it on. They’ve tried everything from simple oxygen flows to BiPAP masks that give an extra push as he breathes in, and helps the lungs stay open as he breathes out. All this by way of saying it has not been an easy process to figure out what Bruce can tolerate, what he can breathe with, and what will work to keep him comfortable and off the ventilator. Needless to say it was a fairly sleepless night.

The doctors explain that Bruce’s diaphragm muscles are understandably weak, after the past few weeks on the ventilator. I think of it like a prize fighter who has let himself go to pot. It will take some effort and time to tone up those muscles again.

Both physical therapy and occupational therapy stopped by today. They had Bruce move his arms and legs, try to punch the air, etc. Some limbs worked better than others, and even mild exertion tuckered Bruce out – but all in all, not bad for a guy who has been in bed for three weeks.

Comments: Ethan and Rachel were up yesterday to see their Dad off the ventilator – which was a good boost for everyone. And the nurse yesterday even shaved Bruce with an electric razor to get rid of that beard that had started to sprout. Apparently that’s one of the skills they teach in nursing school! It was nice to see a familiar face emerge.

The team here is keeping a close eye on Bruce as it does all it can to keep him off the ventilator. No guarantees obviously, but we’re taking it one breath at a time.

Love,

Bruce (and Lisa)

8-27-11 Saturday +10 months

(From Lisa)

Status: Another period of breathing on his own, with an assist from the ventilator. Doctors want Bruce to exercise his lungs.

Events: Not much new here. We continue with the drugs to treat the CMV in the lungs. Doctors continue to work toward the goal of – once again – getting Bruce off the ventilator. Today he did pretty well. He was able to breathe on his own for over 10 hours, with assistance from the machine. (As I understand it, Bruce is doing the yeoman’s work, but the ventilator helps with oxygen and positive pressure so the lungs don’t deflate entirely as Bruce breathes in and out.)

Bruce had another CAT Scan in the early hours of the morning – at 1AM. It’s not because there was any emergency, it’s just that’s when the hospital world came into alignment to be able to do his test. Much of the timing depended on when the “Purple People” could come to transport Bruce to the CT machine. Long-time blog readers will remember Bruce’s sentiments about the efficiency of the transport folks at the hospital. It turns out when you’re in more serious condition; you jump a notch on the transport hierarchy. The regular transport folks aren’t allowed to push your gurney from one location to another in case something happens on the ride and emergency medical care is required. So it’s the “Purple People” as they’re called at Hopkins, who transport you. They are dressed in purple scrubs, and the teams are made up of hospital techs and nurses. The Purple People were apparently quite busy with seriously ill transports last night, and didn’t get to Bruce until 1AM.

Doctors said the CAT Scan didn’t show improvement – but they don’t seem overly bothered. They say those scans often lag behind what’s really going on in the lungs, and they are more interested in how Bruce is doing clinically. As the doctor told us this morning, “He is very ill, but all things considered he’s doing well.”

Comments: It was 10 months ago today that Bruce had his bone marrow transplant. As with many major events in life, it seems just a moment ago, and at the same time, a life-time ago. We are determined to do what we can to get to the one year celebration and beyond.

Meantime it’s raining outside as Hurricane Irene makes its way up the East Coast. No matter what the storm outside, we are counting on a peaceful night inside. Hope you have one too.

Love,

Bruce (and Lisa)

8-25-11 Thursday +9 ¾ months

(From Lisa)

We are reminded that this is a marathon, not a sprint.

Status: One step forward, one step back. Bruce had to go back on the ventilator in the early hours of the morning.

Events: Yesterday we were so excited when Bruce was able to get off the ventilator.  Unfortunately he and his lungs just weren’t strong enough to keep up, with just the assistance of an oxygen mask. Doctors said he was doing well breathing in, it was breathing out and expelling carbon dioxide that was problematic. Around 2AM doctors again had to intubate Bruce and put him back on the ventilator. They will work to get him off again as soon as they can. Already this morning, the respiratory therapist began another breathing test. Bruce managed five hours before tiring out.

Comments: It was a disappointment for Bruce and all of us to have him go back on the ventilator, but the doctors reassured us this happens and is hopefully only a brief setback. For now we stay the course. I wish I had some pithy Winston Churchill-type comment about forging on – but my human quote machine is sedated and unable to assist.

Thank you for all your uplifting comments.

Love,

Bruce (and Lisa)

 8-24-11 Wednesday   +9 ¾  months  

 (From Lisa)

What a difference a week makes.

Status:  Off the ventilator!  Yes, you read that right.

Events:  Yesterday, Bruce proved to the doctors that his lungs could still work.  He was able to breathe on his own, with an assist from the ventilator, for 11 hours.  That was up from just two hours the day before.   With that encouraging sign, they were hoping to get him off the ventilator entirely today. 

So today, after another successful breathing test, the big moment came.  Everyone was so excited that they crowded into the room. Our resident, one of our pulmonary doctors, the respiratory therapist, Bruce’s nurse, the charge nurse, me and Bruce’s brother Terry.   One, two, three and out came the breathing tube. 

Bruce is still on oxygen – using a face mask. But he’s breathing well and already trying to talk.  (Not surprising, knowing Bruce.)

And the doctors now have an actual diagnosis.  One of the biopsies from the second bronchoscopy turned up positive for Cytomegalovirus (CMV) pneumonitis.   As always, Bruce is unique.  They’d been hunting for CMV since he was first admitted, but all of the blood cultures came back negative.  It ultimately took two cells from the biopsy, using a special stain, to grow the virus.  The doctors say it’s very rare for a negative CMV blood culture, and a positive biopsy. Also, it’s rare for CMV pnuemonitis to rear its head this long after transplant. 

Once they discovered this, the doctors immediately stopped the high dose steroids. Those weaken the immune system – not a good thing if you’re trying to fight off CMV or any infection.  The doctors began treatment with Ganciclovir and Intravenous Immunoglobulin (IVIG).  IVIG will do a number on his numbers – so they’ll keep a careful eye on those white and red cell counts. 

Comments:  We know there are no guarantees about the days and weeks ahead.  Bruce is still quite ill – his lungs have to clear, he has to get over his C. diff, and has to regain strength.  But we are so amazingly thankful to be in the position we are in today.   We know all of your good thoughts, prayers and wishes helped bring us here.  One person wrote to me that if we had a dollar for each of those good thoughts we’d be millionaires.  We are already rich in wonderful family and friends.

 Love,

Bruce (and Lisa)

8-22-11 Monday +9 months

(From Lisa)

Status: All of the cultures are still negative for infection – viral, fungal or bacterial. The best guess is that Bruce has one of a number of inflammatory lung diseases that can result even this long after bone marrow transplant, especially in patients with Chronic GVHD, which he has.

Events: One of our brilliant (and I do mean brilliant) pulmonary doctors decided to try a regimen of very high dose steroids to try to fight the lung inflammation. Bruce is now on 500 mg a day for at least three days. Today’s chest x-ray did seem to show slight improvement, and Bruce has been stable on his ventilator settings for the past 24 hours or so.

Given that, doctors decided to switch the ventilator to what is called “pressure support mode”. That was a test really to see if Bruce could breathe on his own – with oxygen support from the machine. He was able to do that for about two hours before tiring out.

Comments: We’re really just taking it a day at a time. The nurses who are caring for Bruce are amazing and they help us stay centered as well. So do all of you. The comments, concern and good wishes are uplifting. Thank you all so much.

Love,

Bruce (and Lisa)

8-20-11 Wednesday +9 months

(From Lisa)

Status. The source of the lung infection still remains a bit of mystery. Nothing really grew from the samples from Monday’s procedure. They did a second bronchoscope yesterday, to take more samples to culture.

Events: Whatever is going in the lungs has progressed, and it has made it difficult for Bruce to breath, because of that he is now doing so with the help of a ventilator. He is on a host of antibiotics, anti-fungal meds, etc, to see if they will help. So far, they don’t seem to be making much of a difference. The doctors will be trying some new approaches beginning tonight.

Comments: So in some ways we are still very much in limbo. Bruce’s condition is quite serious, but his heart, liver and kidneys remain strong. It’s just those darn lungs. He’s in a big fight – but I know all of you are there with him.

Love,

Bruce (and Lisa)