Closure

Please join us on Sunday, February 17, at 4:30 pm, for a brief gathering in honor of Jim Kirk.  Rain or shine, the gathering will be held in the Colorado Lagoon Park at the corner of E. 6th St. and Monrovia, Long Beach, CA.  It's a spot that held special meaning for Jim.

Jim's interests, talents, and friendships were so varied. Rather than have a traditional memorial service with speakers, we would like to give everyone this opportunity to meet, mingle, and share their stories and memories of Jim with one another. 

Please note that there are no facilities nor will seating be available at the park.

We received outstanding care and support from everyone at City of Hope.   Should you wish to make a donation to them in Jim's name, we would be honored.  Donations may be made at www.COH.org or 1-866-683-HOPE.

Complete

Jim passed away at 3PM this afternoon.  Peacefully, listening to us talk about boats.

Thank you all.

Tonight I'll be home, with friends.  I'll look at e-mails and comments, but please, it will likely take me a day or so to respond.

Dying

Yes.  We have passed through the processes of healing and treatment and now we are in the process of dying.

Please understand that we have reached this point together; Jim, myself and the entire staff here at City of Hope.  We have worked hard and done our best.  Nothing was left on the table.  Jim lead us and made clear his goals- how he wanted to live, treat his illness and now how he wants to die.  None of us is happy about the failure of the cord blood transplants, but all of us know we did our jobs well, in concordance, and as a team.

As of this afternoon, Jim's care is about making him comfortable and not prolonging the process of dying.

There is no knowing how long this will take.  He is as comfortable physically as we can make him.

Central to our joy has been the love and support of our family and friends.  You have been with us all the way.  Please, stay with us now.  Understanding death is not easy.  How each of us face it, how we let go of a loved one, is as different as each of us is to one another. Saying good bye is important.  If you would like to come and do so, yes, but please know that Jim is pretty confused (drugs) and unless his awareness level changes, he will not likely know who you are.  Please email me, do not call, if you want to ask about visiting.  We are keeping the room as peaceful as possible.  If you want to visit and you play an instrument, consider bringing it with you.  Music is a joy Jim will recognize.  As ever, for the welfare of all, you must be healthy if you come to visit.

Thank you.

Stable

Folks, I will be posting tomorrow.  Nothing much to say right now- please be patient with me.  Thank you.

Interlude

Didn't someone once say something about music being the sound between the notes?  Today is like that.  The notes are the events; getting a Permacath installed in Jim's chest this morning in preparation for dialysis this afternoon.  The space between included a lovely in room concert by Barbara Schilling playing her harp.

While generally the concept of dialysis is rather scary and not a positive thing, in this case, Jim's case, it is a good and likely temporary thing.  Yes, it means that his kidneys are over worked, but it also gives us a chance to:

1. reduce the amount of fluid he is retaining (he is one puffy dude these days)
2. remove accumulated toxins 
3. resume all the drug treatments he needs to fight the fungal infection and herpes virus and support the baby white blood cells
4. feel more comfortable (less swelling, less confusion).

For the last few days, we've had to discontinue some of the drugs we'd like to keep on board because of the difficulties with the side effects, mostly those on the kidneys.  Now we'll be able to resume the full force fight against the buggers and in support of the fledgling white blood cells.  The plan is to do a few rounds of dialysis starting the first one later today and then evaluate the situation.

We should know more tomorrow how that fight is going against the HHV-6 (herpes) virus.  Samples went out to the lab in Utah a couple of days ago; they take 3 days to process.

We did get a new CT scan two evenings ago.  It showed very little change in the pneumonia.  The lungs have some cavitated spots where the fungus has munched up tissues.  There was more fluid then before but I'd be curious to see another CT scan today.  Reason, in the last couple of days Dr. Raz, the thoracic surgeon, scrubbed the line from the chest to the collection box.  Apparently, Jim has been breathing in rubber bands and they were blocking the drain tubes.  Dr. Raz yanked the rubber bands out and the collection box filled nicely.  The RN's, following Dr. Raz's lead, are vigilantly removing rubber bands at regular intervals.  This should change the CT scan picture.

Some of the drugs have been changed- Ambisone for Abelcet and Daptomycin for Vancomycin, and a new antihistamine Vistaril for Benadryl. Dr.Khilnani, the nephrologist (kidney dude) revises Jim's yellow feed bag (liquid nutrition) daily.  No one else dares to alter the mix he creates- apparently he is a pro at yellow feed bag details.

Looking forward to what the dialysis will do for Jim.  Hopefully a heck of a lot of good. And thanks to you, Dr. Cindy, for your positive words on the benefits of dialysis.  You turned my thinking around.

Ah, another reason for hope lurks.  There is always reason for hope, but for the last 4 days the white blood cells have been holding at 0.2, not 0.1.  It ain't much but at least it is a little in the right direction.

  

44/17

We are 44 days past the first transplant, 17 days beyond the second one and holding.

No news on the white blood cell counts, still in the cellar at 0.1.

The pneumonia is a bugger, we'll get another CT scan tomorrow to see if there is any change.

The kidneys are a grumpier (creatinine is around 2.9, up from 2.5), but the bladder appears happier (less bleeding, fewer blood clots).  Dr. Khilnani, the nephrologist (kidney doc), is keeping a close eye on Jim and adjusting his liquid diet to include more goodies- magnesium, calcium, potassium and acetate, but we are inching towards dialysis.

Some of the medications have been tweaked.  The main antibiotic is now Daptomycin instead of Vancomycine.  Dapto sounds like a gem of a drug, maybe the best thing to come out of Venezuela in some time.  On the antifungal front, we are using a new Amphotericin B; Ambisome in place of Ablecet.  Why?  There is a thought that the Ambisome is less bothersome to the kidneys. Carefully looking for more information on this- Fungalforum and Fungiforum have very different audiences.

Robbie, Jim's blood sugar is at 147, what's yours?

Jim has developed a whole new way of sleeping and it is noisy.  Snorting, chuffling, talking, groaning, moaning, mumbling, grumbling, and muttering at length and with substantial volume.  Such a quiet man, where did this all come from?  No matter, I'm going home tonight to sleep (first time since???) and will return tomorrow with new, less penetrable earplugs.

On the run I took a few days back up Mt. Olive drive, saw lovely deer.  When I returned, Jim and Kyoko (OT) were tying knots.  She'll be back tomorrow and tells me we need to play on the Wii together. Sure, sounds like fun.  She, as with so many others here at City of Hope, is indomitable. We are all pulling hard for the same goal.

Time to give the man his daily pedicure.

Baby Bird, The Ice Cream Man & Rob

Just a nice day.  No news, nothing good, nothing bad, just medicine, sleep, poop, breathing, friends, ice cream and music.

If you couldn't guess, Jim is the Baby Bird, John is dishing it up and thus is the Ice Cream Man and for the life of me, I can't think of a nick name for Rob that works, so he is just Rob and that's enough.

Thanks to Audrey who called to say nice things, the guys for showing up and hanging out through all the fuss a day on the BMT ward entails and for letting me yabber myself silly.  You were very, very generous.

We had Josephina as our nurse today.  27 years of experience here at City of Hope and she is amazing.  Olga was our PCA.  Again she and I found a way to laugh over the most ridiculous things.  People accuse us of tippling, but no, we just have the same weird streak of humor.

Jim is handling the Foscarnet fine.  I need to correct an earlier post- Foscarnet is the only drug he will be getting to treat the HHV-6 virus; he will not be taking Cidofovir.  The nephrologist, Dr. Khilnani, has a close eye on Jim's kidneys and is okay with what he sees for now.  The pneumonia is increased over the last x-ray, but so has the Ablecet, so we hope to keep the bad boy fungus in a corner.




Time to sleep.  Rita, I'll call you tomorrow.

Who Have You Been Kissing!?!

HHV-6.  Seriously, Jim, who have you been kissing to come up with a herpes virus!?!  Wasn't me.

This latest virus is in Jim's blood and while thoroughly unwelcome, is not as lousy as the ongoing but somewhat cornered rhizopus fungal gem in Jim's lungs and chest.

HHV-6

The drugs of choice to treat the HHV-6 (and, no, I don't know if it is the A or B type, but suspect B) are Floscarnet or Cidofovir.  Apparently they work well, but, yes, they too have a price.  So many of the drugs Jim already takes are gunning for his kidneys, these new ones will too.  Poor kidneys.  The new drugs can also do a number on the bladder and since that is already bleeding, the urologists are mumbling things about burning the bladder.  Nice. Our pals Floscie and Cido have other charming side effects like itching, prickling and  burning sensations, irritability and hallucinations.  I vote for hallucinations.

Given the current state of Jim's poor harassed kidneys, there is a good chance that he'll need dialysis. We'll see in a couple of days how far his creatinine levels ascend in reaction to the addition of the new drug, either Floscie or Cido.  However, and this made the situation seem reasonable for me, the dialysis will not necessarily be a "forever" thing.  When the virus is defeated, the drugs will stop and the kidneys may recover all or some of what they suffered.  Also encouraging, is that this is a known virus with a known treatment process.  Somehow I find it comforting not to be dealing with an exotic bugger, just a garden variety human herpes do-dad.

Jim getting love from Linda and Karen.

Today we will start the Floscarnet (pre-hydration please) and tomorrow perhaps the Cidofovir.  We will have the same RN/PCA team of Linda and Karen for the next three days, which will be nice.

Understanding the time frame is important.  We are looking to see Jim's white blood cells improve in the next 3 to 7 days.  We have to fight this virus now or it will certainly defeat the new white blood cells.  If the kidneys need help and Jim goes bananas for a few days, so be it.  Not fighting this virus now would mean giving in.  That is not on the agenda.

Holding Steady on Shifting Sands

Not much going on in the last few days that makes for either pleasant reading or writing and no significant progress either.

We are on the tenth day out from the second transplant and if luck is shining on us, then in the next 4 to 10 days we'll see Jim's white blood counts go up.  They are still at rock bottom.  That's the key to everything.

In the meantime, all the amazing care givers at City of Hope are doing a dance with Jim, his drugs, his infections, his organs and his will.  The dance is to an ever changing tune, with ever changing partners.  Sometimes there is a fever, sometimes a culture shows something of interest, or the bladder interrupts the kidneys then the lungs ask for a turn on the floor.

Enough with the metaphor already, I hear you say.  Right.

What is happening now, and for the last few days, is that Jim is showing various symptoms such as fever, rigor (shaking), bleeding, and clotting.  These are related to either his infections (fungal or otherwise- we keep checking to see what sort of bugs he may have) or side effects of the drugs, his lengthy bed stay or whatever.

So, who are the dance partners?  Sometimes it is the bladder and the Foley that is draining it.  Those Terpsichorians are rather dramatic and fall distinctly into the "no fun" category.  The kidney functions are reasonable, but there is blood passing through the urine, likely coming from the bladder.  Now and then a blood clot blocks the Foley line.  The nurses have been able to flush the clots through but doing that hurts.  Beyond what Jim's kidneys produce, the bladder is also being irrigated with saline solution to help dislodge the blood clots.  The amount of saline flushing the bladder is adjusted in an effort to find the best results.  That also changes the frequency for emptying the Foley collection bag- a task that cannot be delayed.  Try sleeping though the night when toilet is flushed every thirty minutes.  You can do it if you wear earplugs.

The numbers of platelets in Jim's blood ranges wildly.  That's good in that the transfusions are effective. Why are the platelets going down so fast? The platelets die off quickly; they are used up fighting infections and also run off with the bleeding   The nurses are measuring and transfusing platelets more often trying to even out the numbers.

He has had some high fevers.  They blast through- showy dance partners. Tylenol, cold compresses and sometimes airing and rubbing down his whole body lower his temperature.  The fevers could be reactions to the drugs, infections, or even engraftment of the second transplant or a combination of the three.  They don't last long.

The lungs are relatively stable- your basic fox trot.  The drain in the pleural space is working well, the flow through it is low.  Jim is not on any oxygen assistance, he's breathing well enough on his own, but does get respiratory treatments six times a day and argues significantly but with no effect at all, about using his incentive spirometer.

Another partner, one of the side effect dance group, is edema.  Water ballet anyone? Lots of bloating and water retention.  Lasix is the drug of choice for that, but as peeing is the only way to remove the fluids from a bed bound patient and Jim's kidneys and bladder are grumpy, the Lasix is not getting a full dance card.

We're not going to talk about poop, purple tootsies, productive coughing or excessive mumbling in one's sleep.  Know that they are all on the dance floor as well.

And constant through it all is Jim's will.  He knows what he needs.  He knows what he is fighting for and how long he has to hang on.  He's doing it and folks, it is not easy.

Yes, Dearie, But At A Price

Not the best TV has to offer, but I did enjoy the series Once Upon A Time.  The oft repeated comment Mr. Gold (Rumpelstiltskin) says rings true.  Yes, you can have what you want, but it comes at a price.  True for magic or medicine.

Two days ago, Dr. Kessler inserted the new, second, tube in Jim's pleural space.  It's working well.  The fluids are draining and Jim is breathing nicely.  Considering the two lungs full of pneumonia, that's a good thing.

Last night and today, Jim has had problems with blood clots in his Foley line.  The clots are blocking the line making an uncomfortable mess.  Gotta fix this problem, but I always like to know the "whys" of a problem.  I haven't run my theory past the doctors yet, but the nurses tell me it makes sense, so I'll share it.

In order to put the tube into his pleural space, Jim had to have a number of platelet infusions.  Can't cut a boy who won't clot. Jim's is constantly getting platelet infusions. As of early this morning, the platelets he got 2 days ago were gone so he got another bag which was particularly effective.  You never know how young or old the platelets in an infusion bag are- yes, the bags are dated, but the platelets collected from the donor are not sorted by age.  The donor gives up platelets that will be a mix of new and old.  Sometimes more of one than the other.

Next factor; kidneys.  The antifungal drug Ablecet is hard on kidneys.  Measuring the creatinine levels tells us how the kidneys are doing, elevated numbers mean that the kidneys are working hard.  Jim's are. Another measurement is color.  I do colors.  The output of the kidneys and bladder, piss, goes from Jim into a bag through a Foley line.  Nice piss is yellow; we've gone through yellow to pink and and now I see red.  Blood.

Putting it all together, I think that the platelets have clotted the blood passing into Jim's urine.  The blood was fluid when his platelet counts were low, but when the platelets were high enough to allow a tube to be put into his chest, they were then also high enough to clot the free blood in his kidneys, bladder or wherever (I don't want to think too hard about "wherever").  These clots are balling up the Foley.

So, in another hour or so, the urologist will insert a new Foley (larger diameter) and a flush system to clean the bladder.  Hopefully this will resolve the issue.  I sure don't want Jim to wake up again and see a wash of red fluid all over his groin.  That was upsetting.

Settle this issue and we can return to devoting all our energy on those white blood cells.  They are the key to everything.

Creeping

Yesterday we rolled downstairs to the CT lab and took pictures of Jim's lungs.  Results showed more specifically what the last x-ray indicated; the pneumonia is still there and unfortunately there is more of it now then there was 2 weeks ago.  More in both lungs.

The infectious disease specialist, Dr. Dadwell (Dr. Ito's cohort) came by in the evening to show me the scan and talk about the options he suggests.  He would like to see the dosage of Ablecet come back up to the maximum and possibly introduce another drug, an anti-fungal called Noxifil (generic name is posaconazole).

So we went to sleep wondering what changes will happen today.

The bone marrow transplant (BMT) doctors here at City of Hope work as a group.  The specialists, cardiologist, pulmonary, infectious disease, all work through the bone marrow transplant BMT group.  The BMT doctors, Nakamura, Nadee, Kheled and others, have the final say on Jim's treatment.  We do talk directly with the specialists.  However, we've learned that the BMT doctors process the views of the specialists and are able to give us a better view of the whole picture.

Dr. Kheled just visited and gave us the game plan.

The Ablecet will stay at the current dosage.  It is less than maximum because of the effect it is having on Jim's kidneys.  It is a bear of a drug.  Jim is wearing a Foley, we can see the output of the kidneys.  It is tinged with blood, more and more tinged.  Higher doses of Ablecet would likely lead to dialysis, not an option.

The new drug, Noxifil, will come on.  It is a liquid that Jim will swallow twice a day.  He needs to eat some foods with fats in them to make the drug work best.  Someone is getting oatmeal for breakfast.  This drug can effect the liver.  We'll be watching.

The fluid in the pleural space is back and needs to be drained. The thoracic surgeon will put the tube back in the boy today.


I haven't mentioned it, but yes, they are constantly testing for any other source of infection and adjusting the drugs frequently to best suit our boy.

This is rough.  We need some white blood cells and soon.

Jim and Jose Romero, our PCA for today, have been enjoying the Alpha Romero DVD.  Thanks, John.

Racing the Clock

No big news for the last couple of days, thus no posting.

Now we are doing our best to maintain what we have.  Not an easy task.  Jim is taking numerous medications all of which cause side effects.  He has been bed-bound for some time, that introduces complications.  The fungal pneumonia is still there, and though his breathing is better, there is actually more fluid in him today then there was a week ago.

The overriding issue are the white blood cells, or lack thereof.  The man needs an immune system.  Hopefully we'll see the incipient white blood cells from the first transplant start to gain traction as the stem cells from the second transplant find their way and get to work. 

That is the race- the white cells racing the fungus.

Again, as ever, thank you all so much for your love, prayers, jokes, visits, posts, mail, cards... you've reached out to us and our hearts are full.

Once Again, With Feeling

What a day.  Shall we take it from highlight to highlight or in chronological order?  I'll try for sequence and logic, but forgive me if the narrative is not perfectly clear.

We started the day well- got a good night's sleep, ate breakfast (yes, both of us ate real food), read the paper, Jim smoked a hookah (got a breathing treatment), and we had nice visits from Hanne Chupik and Mike and Shelley Dullaart. Jim felt good, was conversant and alert.

During morning rounds, Dr. Nadee told us that the new stem cells had arrived from Houston and were being tested in the lab.  After testing to make sure they were what was ordered and in good shape, the stem cells would be prepared for transplant which I believe included thinning and partial thawing.  Testing would take 3 hours so we weren't looking for transplant to happen until sometime mid day.  Her other news was that the lab, after much effort, was finally able to locate and identify some of the white blood cells and in doing so, determined that yes indeed, one of the two cord bloods in the first transplant had grafted.  It was the boy from Houston, not the girl from Seattle.  Jim is now a Long Horn.  Also, the salts in his body were going down (good), the liver function holding (okay), and the kidney function rising (not good).  The dosage of Ablecet was lowered and the additional white blood cell drug added on Sunday was eliminated to help the kidneys.

Then, after a graham cracker and jello snack, it was time for fun. Dr. Nadee decided that the stem cells, the semi-frozen pink goo, for the transplant would be pushed through Jim's PICC line. This was different from the first transplant. For that one, the stem cells were dripped intravenously through a temporary IV line routed through Jim's jugular vein.  Putting such a line into Jim's neck right now was not a good idea nor was putting a line into his groin (the other likely location).  The PICC line in his arm was the best choice.  But, remember, the PICC line is a smaller diameter than the usual transplant tubes and that the thick transplant materials need to be put into the body quickly while they are the right temperature.

Pat, the PICC line Pro in action

Jim's PICC line was put into his arm on 5 July.  It's worked well, but is also near the end of its normal use period. Time for a new line.  Yes, there are PICC line pros and City of Hope has one.  Patrick, who has PICC" embroidered on his white lab coat, thus is a PICC line pro, put a parallel pipe into the patient through the preexisting port pretty promptly.  No joke.  Jim got a new PICC line but no new hole- they ran the new line through the existing hole in Jim's arm right next to the old line then pulled out the old line.  New pipes for a new life.

After Patrick did his magic, X-ray came by with the Rad Bag and portable machine, took pictures of Patrick's work to prove its properties, which were perfect, and told people they could proceed with the procedure.

There was some delay while the lab got the prep directions sorted.  They had been prepping the stem cells for the usual IV drip bag, but had to change that to a syringe instead.  Not your basic syringe, but one that looked  like something you'd find in joke store; it was about the size of a turkey baster.

While we were waiting for the stem cells to arrive, Jim noticed that one of the three lines emanating from the new PICC line was leaking.

Dee checking the stem cell's ID

Understand that the PICC line is one tube from the arm into the body, but that the exposed end of that one tube has three tubes attached to it. The three tubes are used for different fluids and along their lengths sport any number of fancy valves, locks, couplings and hardware.  One of the three tubes had a stop cock valve on it and that was leaking.  Bad valve.

No connection

Dr. Nadee, turkey baster and Jim

While we were sorting out the leaking valve, Dr. Nadee and the RN from the lab arrived with the cooler full of stem cells in jumbo syringes.  Dr. Nadee came into the room, saw the leaking valve.  Dee, our heroic RN, removed the bad valve.  Dr. Nadee tried to fit the turkey baster to the next available fitting, a small nozzle. No good; the turkey baster and the nozzle are the same size; they cannot be coupled. Dee bolted from the room in search of a new stop cock valve, Dr. Nadee with the turkey baster sized syringe full of semi-frozen stem cells in hand, stood there, checking its temperature by feel while Dee was gone for what seems like forever.  Jim got wound up and started to act like a ship's captain with an attitude.  Dee returned with another RN and a fist full of stuff but not another stop cock valve the right size.  Dr. Nadee said never mind about the stop cock valve, just take off the too small nozzle and she'll stuff the stem cells directly into the next fitting on the tube.  Bravo!  The connection was made and turkey basters number one and two were locked on and deployed.

Time to celebrate with the bottle of Martinelli's sparkling cider from Shelley and Mike.

Then, in keeping with the "make it up as you go along" theme, just as I popped open the bottle of Martinelli's,  Jim decided it was time to barf.  Berry Jello redux.  This is common with transplants (it's the drugs) but I had to tease him about throwing up at a party before drinking. The lovely thing about partying with doctors and nurses is that they are not in the least bit bothered if you throw up.  We cleaned Jim up, hoisted our cups and continued on.  Jim gave a lovely toast, thanking the people in the room and the entire staff of the hospital for their good work, drank his cider and went to sleep.

One more lovely thing occurred today.  After the transplant, I stepped out to the 6th floor lobby to stare at the mountains and gather myself.  There I saw Dr. Itoh with two gentlemen in suits.  Dr. Itoh is the infectious disease specialist who diagnosed the source of Jim's pneumonial infection. I walked up to them and told Dr. Itoh that Jim had just gotten his second transplant.  Dr. Itoh nodded then introduced me to his companions.  They were representatives from the drug company that licenses Ablecet, the drug Jim has been taking for his rhizopus fungal infection.  Ah, ha!  I shook their hands and told them, "Thank you!  Do you realize that your drug has kept my husband alive for the last two weeks?  That without your drug, he would not have lived to get this second transplant?" They loved it and it did me good to thank them for their work.

Now it is time to settle down for the night and let these new stem cells get to work helping the little white cells from Texas grow to be big, strong life sustaining buddies.

Where Oh Where?

Jim, Robert, Julie and Claude Raines 

So, turns out that the lab is having a heck of a time determining the DNA of the white blood cells in Jim's body because they are having a heck of a time finding the white blood cells. That's how few there are.

Nonetheless, the back up stem cells will be transfused through Jim's PICC line later this week.

Jim got a good night's sleep, no tremors and not much of a fever.  Apparently the side effects from the Ablecet abate after a few doses.  Good thing.  Jim enjoyed the day, the visitors and even a movie. His breathing is a little easier and since his platelets are up, PT, OT and RT all came looking for fun. His kidneys and liver are holding their own and he enjoyed a little bit of real food, though swallowing is a little bit difficult (apparently you have to practice it to do it and on a IV diet, you don't practice it so much).

City of Hope has given us a big gift.  A PSA.  No, that's not a reference to a defunct airlines it stands for Patient Safety Assistant and it means that someone is in the room, awake and watching, 24 hours a day.  So, if Jim tries to call for his nurse on his Foley again, it won't be an issue.  It is a huge gift to me and means that I can actually sleep at night and not worry about what Jim may think is amusing to do while my eyes are closed. I am thrilled and have enjoyed Julie's company and services so very much today.

Never A Straight Line

Today started early and continues to be interesting.

At night, Jim receives the anti-fungal infusion; the drug with the nasty side effects.  Last night we did a much better job of managing the shakes and fever.  

For our good work, we got a reward.  At 3:45 am Mr. was wide awake and bored.  Yes, this is a reward.

He was bored because he was feeling well enough to be interested in doing something. I gave him the laptop, but that was too hard to manage (shaking hands don't do well on mouse pads). I put the laptop away and plopped the Kindle reader in his lap (thank you very much, Alisa and family).  He could swipe a finger across the screen.  He spent nearly an hour reading Sigurd Olsen's book on canoe camping and the Boundary Waters wilderness before his finger stalled and his eye lids slipped down.  Only after I put the Kindle away did I realize that I knew he was awake because he'd woke me up.  How did that happen?  I'd been across the room, asleep, earplugs firmly in place when he called to me.  The only way I could hear him through sleep and earplugs was because his voice was loud. No, I'm not very bright at 3:45 am, so it took me some time to conclude that if he could make himself heard over the sleep and earplug obstacles that he was speaking loudly.This he could do only if he had the breath for it.

Neat. 

Jim has been on oxygen to help his breathing.  The oxygen blows into his nose through a small device called a nasal canula. The need for oxygen is determined by measuring the oxygen saturation in his system- they use a nifty little clip on his finger to make this measurement which must be at least 92%. On Friday night, his reaction to the anti-fungal medicine was so strong that he had to have the oxygen flow increased to 6 liters to maintain oxygen saturation at 92%.  Six liters is the all they will allow on the nasal canula. If he needs more to reach 92% then he has to use a face mask.  If he needs more than 10 liters, we are in trouble.  He'd been at 92% since Friday night. This morning, he was at 97% with 6 liters, so we lowered the flow to 4 liters and he's been over 92% at that flow rate all day.  Yeah.   

The other good news today was the removal of the catheter into the pleural space.  So little fluid was coming out of the space that the pump and collection device was no longer necessary.  Good to see that go bye-bye.  Now Jim can lay on his right side and doesn't hurt from a catheter tip poking him in the diaphragm.

His liver and kidney functions are stable. They've been working very hard to process the drugs. Stable is good.

That is about it for the good news.

As to the success or failure of the transplant and the possibility of a second transplant, the situation is less clear.  There are still little baby (monocyte) white blood cells in his body. Don't know yet if they are coming from the transplant done 24 days ago or from Jim's native system. We'd hoped to know this by today, but don't.  What's the difference and how does it affect the choices to be made?  Good question and I'm still trying to understand the answer.  The issue could be one of three things: one, the transplant may not have worked; two, the stem cells that were transplanted were too weak to function properly or three, that the transplanted stem cells are working but that they are being destroyed by the infection.  The risk of adding new stem cells into the mix (doing a second transplant) are that it may wipe out the efforts of the first transplant (if such efforts exist) or cause a reaction in and of itself which could bring the house down.  Optimistically speaking, a second transplant may work well enough to either become Jim's new bone marrow or support the work of the first transplant. 

Hope I've got this right.  It's difficult to always understand what's happening scientifically especially when you spend the night watching for tremors.  

Then there are the precious moments.  I've been writing this blog update while sitting at the desk right out side Jim's room.  He'd been alone in the room for oh, maybe 30 minutes.  I poked my head into the room to let him know that Alisa had called and sent him her love and that I wanted another 15 minutes to finish the blog post, could he wait?  "No," he says, "come in now."

"Why?"

"I want you to call the nurse."

"Why, what do you need?"

"I'm cold and I want you to call the nurse!"

At this point I decide that whatever the issue is, I have to don mask and gloves and go into the room. The blankets are down around his ankles and Jim is waving the foley bag at me exclaiming that he wants me to call the nurse; "I've been pushing the button for her but she hasn't come!"  Trying to tell him that pushing a foley bag was not going to bring the nurse really didn't cut much with him. Hell, those damn call buttons are a poor design anyway; maybe the call buttons should be on the foley bags.

So, for now, we hope he stays stable while we continue to weigh and measure the choices.  Hopefully the course will come clear in the next few days.  It is not clear today, but still, it was a day with some progress.

With A Little Help

Friends and family all weekend long.  Who knows how to jump start a miracle?  If the love, support and laughter we had going in Jim's room this weekend could do it, we'd be on our way. This room was rocking. There was music, chocolate (which stays outside the room but makes the staff happy), stories (who knew ice boats would be such a hoot?), boxes of 3 (you figure it out and thank you Robbie Perrot), phone calls and messages from all over the globe (Kuwait, Israel, Canada and all around the USA).

Jim has been thoroughly lucid. No more confusion. As usual, he doesn't say much but now it's not due to inclination. Breathing is hard work. Not much wind left for words. During the day he has been listening, resting, and enjoying the company.  At night, we are working through one of the harder issues.  The Ablecet is a miserably tough drug and takes hours to infuse at the quantity Jim needs. Demerol and Benedryl are supposed to help with the side effects.  The Benedryl is taken before the infusion, but we are still searching for the right time to administer the Demerol to control the rigor, the severe shaking. Not only is the shaking uncomfortable, but it is stressful.  Stress means the blood pressure, temperature, heart rate and efficient use of oxygen all suffer. Each time Jim goes through an episode stress he seems to end at a higher plateau instead of recovering back to where he was before the stress. Right now, I'm watching him shake.  It's been going on for about 20 minutes. They look like waves of motion passing through him. I'm trying to ask him to relax through them and let them pass along.  I think we're doing better than last night.  I hope we get the hang of this.

It was so good to see Dr. Nakamura today.  We missed him while he was on holiday, a well deserved holiday, but it was good to see him nonetheless.  He gave Jim's situation much thought and decided to add an additional white blood cell therapy drug.  Let's hope it stimulates some production.  Tomorrow we'll see if there is any evidence of the transplant's DNA in Jim and I suspect that will inform the decision on when and if the back up stem cells will be transplanted later this week or no.

Ah, more Demerol, good visualization work and now peace reigns and Jim sleeps.  So shall I.  Good night everyone and thanks again for the waves of love.

Will

We always knew this was going to be hard. We always knew we were at the best place to do this. These things are true.

The pneumonia is in both lungs now and it is large (CT scans and X-rays from yesterday show us this).

The white blood cells are still in the cellar, 0.1 (again, a normal person has 4.5 to 10.5). On Monday they will test to see if there is any DNA from the transplanted stem cells present in Jim's blood.  Later in the week it is likely that they will transplant the back up cord blood.

Jim is going to have to work hard to get out of this one. He wants to win. His will is strong. He is completely clearheaded now (sorry, Brian), able to speak his mind and aware of the situation.  He is in some pain, but not much.  He has pain medication at his control and though it makes him sleepy, it does not make him confused. He is getting some oxygen to help his breathing. He is not getting out of bed at all, still on liquid IV nutrition but sipping water and juice at impressive rates; even enjoyed an Italian iced gelato last night.

The anti-fungal drug Ablecet needs some help fighting this infection.  If Jim could get a bit of an immune system going, some white blood cells, that would be a big help. Now that the pneumonia is in both lungs, even if Jim were strong enough, surgery to remove the infected tissues is not an option.

Our confidence in the City of Hope has never been greater.  They have done everything well, in a timely manner and supported us both.  They continue to do so.

Again, thank you all for all the support, help and good wishes and prayers. We feel honored and loved.  That's nice stuff.

Long Day's Journey...

Tough day.

Yep.  Tough day.

Jim put up with an awful lot of stuff and though he is somewhat "out to lunch" he does have a vague idea that the next few days will be uncomfortable.  The drain and pump arrangement is in place, working and all that went fine.  We are on the outside looking in. I can't really say what Jim's take is on this business, but I suspect that if he doesn't remember any of it, that'll be just as well.

There isn't much fluid in the pleural space.  Dr. Park, who did the surgery, explained that only reason Jim got the drain and pump gizmo was because the infection is fungal.  Fungal infections are special.  Men with zippo white blood cells who have fungal infections can get in big trouble fast.  The drain-pump will force the rotten fluids out. Force is needed but it sure is unpleasant.

I was allowed to watch the surgery.  I like to watch and am happiest when they let me do so rather than shunting me off to a waiting room.  The surgery was done while Jim was laying on his side on the sliding table of the MRI scanner.  An odd place to do surgery, but it is painful to move Jim and they needed the scanner before and after the surgery, so it made sense.

Now that I see the device in operation, it is a little different from what I described in yesterday's post. From start to stop, here is what we have.  There is an air line feeding from the wall to a combination pump and collection box.  The air flowing through the line creates negative pressure in the box. This makes the box act as a suction pump.  There is another line exiting the box.  This line is a hose which in turn is attached to the smaller catheter that was surgically placed in Jim's pleural space.  Through the catheter and then the hose the fluid is drawn from Jim back into the box where it collects.  The entire system is closed.  When the collection box is filled, it is completely replaced (not drained and reused).  This keeps things clean and prevents outside air from entering his body through this hole in his side (a good thing to prevent).

Jim was good and properly doped up for today's procedure.  He has been telling me the most remarkable things. He asked if the USC stadium was nearby.  He told me he could hear their marching band.  Then he claimed he could hear music from the room next door (next door is closet for collecting used food trays, no music unless the plastic trays can carry a tune).  When he was getting wheeled out of the CT room, he asked me if Brian Caplen was there; said he heard Brian's voice.  When Jim gets Ablecet, the anti-funal medication, he also gets Demerol. That makes for more interesting comments, overly vivid dreams and a lot of rather dance-like hand movements, though the stated purpose of the Demerol is to prevent the shakes, a very uncomfortable side effect of Ablecet. Yes, we did check and no, there are no fungi in his brain or sinuses.  Just Jim and his drugs entertaining us.

"there is a fungus among us"

Many years ago, when Jim and I were first dating, we spent the afternoon at the Huntington Library and Gardens.  We enjoyed the Jack London collection in the library, Pinkie and Blue Boy in the gallery then a stroll in the gardens.  While ducking between the trees lining one of the formal gardens, Jim took me by the arm and pulled me closer to him.  "Oh, how romantic!" I thought.  Just when I figured he was going to give me a kiss, he leaned over and quietly whispered in my ear, "Don't look down; there is a fungus among us."  Not so romantic but pretty funny.

That was a long time ago, and now here we are again among the fungus but this time it's not so funny.  Jim has a rhizopus fungal infection that is causing empyema and pneumonia. Right, you knew that. Rhizopus is the name of the fungus, it's a member of the mucor family.  There are a lot of different kinds of rhizopus, sorry, I don't know more specifically which one Jim is hosting. It is a common mold found on plants and animals.  It is not a problem for most of us, but for someone like Jim with zippo white blood cells, everything is a problem.  Inside the human body, the rhizopus grows quickly and eats tissues.  Right now it is causing two problems; empyema and pneumonia.  Empyema is fluid collecting in the pleural space (the space between his lungs and ribs).  Pneumonia is fluid collecting inside the lungs.

Both empyema and pneumonia can be treated.  First treatment is chemical.  Dr. Nadee started Jim on the anti-fungal medication called Ablecet on the 31st.  Good guess on her part- there was no information on what the cause of pneumonia was when she prescribed the Ablecet.  Let's all give thanks for the skilled practitioners of the art of medicine.  Second, mechanical treatment. Tomorrow morning the radiology team will put a drain into the pleural space to forcibly pump out the gathering fluids (the empyema).  The radiology team gets to do this because apparently they've got the really cool ultrascopic equipment around here. Third level of treatment is self help; Jim will use his incentive sprirometer diligently.  This deep breathing will help open and dry out his lungs, improve lung function and hopefully prevent secondary or even third level pneumonial infections.

Fungal infections take a long time to kill.  They grow quickly, but remove slowly.  Progress is underway; the Ablecet is working.  We know this because Jim has had no fevers and better oxygenation in his blood since he started the drug on 31 December. And, fortunately, he has shown he can handle the high dosage without side effects.  But it will take weeks to knock this bugger out of his body and some time to reduce the mass of dead stuff it leaves behind in his lung.

This mold buddy is not unusual with BMT, nor does it necessarily affect the progress of the transplanted stem cells in their work to become functioning bone marrow. In fact, when those little babies start to work, the new white blood cells they make will help Jim enormously.  I'd like to tell them, "Hello, welcome to Jim, now get to work!"  To that point, we hope that in the next few days we'll see the new white cells start to stick around and add up.

Special thanks to Dr.s Ito, Nadee and Raz for their help tonight in explaining all this information to us and then for their generosity in taking time to make sure we got all of our questions answered.  I do ask questions.  Lots of them.