Hold Tight and Pretend It's a Plan

5:30 PM   The couch at Hackerman was unexplainably hard and weird.  We are home now, and we have already had naps on the excellent couches in our livingroom. We have to remember to do the "push IV" thing once every eight hours or so for the next nine days.  My hands will never have been so clean. I watched the whole video on how to do this and the main job is to have everything so clean that nothing gets into that line. Lots of alcohol swab action between every step -- saline, antibiotic, saline.  The "push" part is that it is supposed to take 5 minutes to get 20 ml into the line. That's Jon's job, to sit there with the clock and push the right amount in at the right rate. I keep rubbing my nose by accident and then I have to wash my hands again. I did not put my name on the board -- that is Jon's last nurse's real name. When we both signed the discharge sheet, she told me that she almost said, "no, you are supposed to sign your name, not mine...

10:45 AM   The results of the bronchoscopy look good so far. They didn't find anything bad -- no fungus, no bad bugs. They will let everything grow for about five days to be sure, but it seems that the antibiotic he started last Thursday might be good enough to finish this off.  So the plan is for us to go home today and finish off this course of antibiotics and then hope to have a new schedule. Jon looks just fine. A little bald, pretty pale, but definitely completely in charge of his world. He will still be bald and pale for the next few weeks but at least we will be home. I will post once more to confirm that all these plans came true, and then I predict that there will be no updates until Monday, April 4 when we come back to Hopkins to have an appointment with Dr. Imus.  So take a break from this trickling flow of information.  It was great to know you all were out there, following the story.  

 9:15 PM     It took two more hours for them to finally have an empty room for Jon's procedure, but when they finally got going, everything went very well.  There were five people watching over him: two doctors plus the anesthesiologist, a nurse and one other support person.  When he woke up, he was coughing but there were no other ill effects. He looked just fine. By the time they got him back to the room after 7:00, there was no plan for him to have any food.  One of the nurses said she would scrounge something up, but that never materialized. So I then understood that it was my job and I walked the halls while Jon took a nap.  Luckily there was a Subway still open and I ordered Jon's favorite sub (Italian), inexpertly.  It is never my job to order the food, as any of my children can tell you. We do believe he will be discharged tomorrow, once they organize the meds.  We may not get out of here until the end of the day but we will be h...

 3:25 PM    Jon is getting loaded onto a wheelchair, quite a production with the IV pole and the blankets and the masks and the tubing. He is on his way to the bronchoscopy. I am quite sure that his determination to have this thing done today has helped us to get to this point. Now and then someone would come in to check on him and sometimes they would ask if he was too hungry to wait anymore. Nope. Not hungry. Hoping for a bronchoscopy.   It is amusing to watch Jon keeping track of all the sequences, and to listen to him reminding them of all the things that need to fall into place. Sometimes each individual does not have the whole picture in mind, but believe me, Jon has it. The main bottleneck to leaving here is getting the home care meds ordered and delivered. The window between doses is eight hours. His next dose is somewhere around 5 PM, optimistically. This means that the next one would be around 1 AM. But where will we be at 1 AM? Where should they try t...

They are sorry that he is not allowed to eat or drink anything until they do the bronchoscopy, and they are also sorry that they cannot predict whether he will even have the procedure today. Jon is unperturbed. As soon as they do this thing, he can start to get out of here.  If that means not eating all day, no big deal. They will certainly let him eat by dinnertime. Unlike me, he can just ignore hunger.  Does it all the time. NPO is non per os . Nothing by mouth. We just looked it up. It is cold and windy outside and we are not missing anything today. We both have plenty to do in this quiet room. Jon is basically just taking up a comfortable bed while they wait. He is on antibiotics but off oxygen. He feels good. We will have to get up and take a walk later.

By now we have learned that plans can change within minutes, but right now the idea is that after Jon gets scoped, they will send him home for a few weeks with some meds. He still is on standby for that procedure, but it should happen on Monday or Tuesday. Then while they wait the five days for that culture to grow, he will still be on antifungal medication that we will administer (assuming it is another IV antibiotic). They may adjust his prescription at that point. It will be at least two weeks before they test to see if this is working. So he probably gets to come home, unless some other unforeseen hiccup happens. When he leaves the hospital, he goes back into the care of his regular Hopkins oncologist, Dr. Imus. We really like this doctor.  Dr. Imus will decide what happens next, along with the Infectious Disease doctor. I left that world yesterday morning and headed for Loudoun.  No one knew I was coming but I had a chance to talk to Ciara outside the greenhouse, Casey by...

7:45 AM     No fever since Weds night.  He is on the standby list for the bronchoscopy because usually these are scheduled further in advance. The first day that it could happen is Monday but there are no guarantees. They have returned to using his central line which is a big relief to everyone involved -- the IV line in his arm was unsatisfactory compared to having a hose with a valve on it.  Drawing blood takes seconds. People come and go all day, asking how he is feeling. When they ask him to tell the story of why he is here, they have to pull up a chair.   Nothing much will happen over the weekend. Rebecca arrived yesterday evening and will stay until Sunday morning.  Jon did not want anyone to spend the night with him in the room, he doesn't need any particular help, so Rebecca came with me to the apartment and helped me eat some of the leftovers.  In a little bit, I will go take a long drive to the country and have a look at some farms....

11 AM     This morning Dr. Paul (the attending this week) came to tell Jon that he is responding well to the antibiotics and they will try to refine the meds so they are giving him more precisely what is useful. At the moment the drugs are for a broad spectrum of possible ills, but they can use the blood results to try to reduce the number of antibiotics, which will make getting out of this room quicker. But the bad news, from our perspective, is that the transplant is on hold until he finishes this round of antibiotics and there is clear evidence that he is cured of the current infection. There is an undetermined infection in his lungs -- I asked if that is called pneumonia and they said yes, this is totally common -- and he can't have anything like that and get the transplant.  So we may be delayed another week. While the train is not technically stopped, it is moving much slower and it has been put on the siding track. The good news is that none of the viruse...

10:15 PM     Jon had a quiet day  in the hospital, meeting a series of doctors and Physician's Assistants and nurses and a pharmacist.  They continued to avoid using his central line while they waited for more information. They gave him two more types of antibiotics to try to cover a wider swath of possibilities. They found that he has salmonella, which could explain the poor gut function. Or not. All in all, he didn't feel that bad. At 6:30 this evening they rolled him downstairs for a chest CT scan, looking for more clues.  He could see the results on his chart but we will need to wait for this to be translated by a professional. Tomorrow they will tell him what they think, but there is something new going on in the lungs. He was on oxygen all day, but they decreased the rate to 1 somethings/something. Meanwhile I had a good long visit with Ellen in the late morning/early afternoon. She brought some provisions and we sat in our masks and talked for four h...

 9 AM Thursday (now that I realize this is more of a morning and evening newspaper, not just a daily) Jon was admitted back into the hospital, about 30 hours after he was discharged. Much nicer room with a window.  He has an infection somewhere and they are trying to find it.  His fever is not scary high (somewhere around 38.3 was what got him back there), but it is a symptom that has been coming and going for about a week.  They did another work-up, he told his history to a new doctor (who may be a third year resident like Alissa, she seems familiar that way) and the doctor ordered a bunch of tests, seeking information. They can just roll all these machines right into the room. It's a huge room with plenty of space and comfortable places for others to sit. When I left last night at 11, the doctor was holding off on changing his antibiotics while she tried to figure this out. She said that the labs were showing that his levels of vancomycin were not yet "therapeutic"...

Just when you think there is a plan, something comes along to change the trajectory.  After a good morning, Jon was found to have a fever when he went in for his normal checkup.  The fever didn't go away after a few hours, it got a little worse. It seems he has an infection and the most likely source is the line.  They are going to admit him back into the hospital now because there are more unknowns. As always, the big worry is sepsis. If you don't know what is causing a fever, you have to think of all the worst possibilities. A bloodstream infection is the worst possibility right now. He hasn't heard directly from the attending yet but the nurse on duty here surmises that they will take the central line out tomorrow. Then there will be a 48 hour waiting period. Then they can put in a PICC line and think about what the new timeline will be.  But there will be some more pauses while they try to stabilize this situation. Jon will be in the hospital until they figure it...

There are various ways to think about time here.  But from a transplant perspective, today is T minus 5.  Another waiting game, but one with real milestones from now on. The clock really started yesterday. We have home-administered two doses of antibiotics, 12 hours apart. The first one was at 11 PM and it took 90 minutes. We are going to wiggle that one back a little at a time so we can go to bed at a more civilized hour.  This morning started slowly, needless to say. Jon's pro forma appointment at the IPOP is at 1:30.  He is feeling better today and he ate breakfast, which is kind of momentous. ***** At 8:30 last night we still hadn't received the delivery of the drugs, but we had been assured that they were coming. Don't know where they were coming from. At about 9:30 the delivery guy called up from the lobby, asking if we were able to come down to get it. Jon hopped off the couch, put his mask on, and headed for the elevator.  The delivery guy took a look at...

At last, there is a plan again.  On Saturday and Sunday he will get his big doses of chemotherapy -- Melphalan -- and on Monday he will get his stem cells back (the transplant).  The collection went well, no issues.  For the next three days we will be here, Jon will have regular check-ups to make sure things are still okay, we will administer the vancomycin ourselves using the same technology as 11 years ago -- a pressurized ball of antibiotics that pushes the medicine very slowly into the line. Jon will rest up and get ready.

He is in a bed for the next five hours, getting his stem cells collected. My notes from last time (Sept 28, 2010) say that he was chilly, he did the NYT crossword puzzles, he napped, and he read. I bet this time will be similar but I can't report on that first hand because there is no room for a chair in his room. He is alone with his nurse.  After that he will go back to the hospital because they still haven't finished getting the vancomycin delivered from the Kaiser pharmacy and this is the way they will keep him on those antibiotics until then.  ***** I don't really have much of a job here. This has been such a slow process that it is easy to forget where we are headed. We still don't know what the schedule will be (no one has said a word) so we don't know what happens tomorrow. But eventually we will get to the part where he feels pretty terrible and then my job will become more clear. Pretty sure he won't eat anything for a long time to come. They just repl...

In brief: Jon was admitted to the hospital last night because they found staph in a blood culture. Started him on IV vancomycin. This afternoon we got to talk to Dr. Borello in person (he is now the top transplant doctor here, he was Jon's doctor 11 years ago) and he decided that Jon will have enough stem cells tomorrow and he will be collected tomorrow. He is confident that it will go well. In more detail: When he was admitted to the hospital last night, he was assured by the attending, Dr. Swinnen, that he would be back out this morning after his dose of antibiotics.  Of course that ended up being optimistic.  They did do another CD34 (the one that looks for stem cells) and the results showed a slight increase, but not much. For many days it has been stuck at 0.02, today it is 0.03. This feels discouraging, but we don't know very much and information is given out in small batches. When Dr. Swinnen came through on rounds at about noon -- with a silent entourage of medical stu...

They don't do anything big over the weekend in the IPOP, just maintenance, so they are not even checking to see whether there has been any change in the stem cell population. It has been stuck at a very low number all week.  We finally got to ask a doctor how common this is -- he said about 20% of patients don't mobilize using the normal drug and they use this different one instead. When we asked how many of those patients fail to mobilize stem cells, he said he didn't know the answer to that, but not zero.  When we said that others in the clinic have expressed confidence that this will work, he did not join in the chorus. When Jon asked what was different now from the last time, 11 years ago, saying "I'm the same person!" then the doctor quickly disagreed with that. Jon is not the same person, he may not have the same capacity to produce stem cells as he used to, and it is an unnatural process that they are attempting, trying to shake these things loose from ...

Alissa says I can just say:  TLDR.  For those in my generation and older, that means you don't have to read this one, as there is nothing of real import.  Too Long Don't Read. Yesterday we waited until about 1:00 to get the news about the new drug.  Jon just sits for hours in a chair behind a curtain and there are people bustling around, up and down the narrow hallway. The IPOP is a small scale hospital ward, kind of like a sleeper train. Behind the curtains are patients who are all on the transplant train, at different points in the process. One side of the aisle is beds, the other side is chairs. Everyone can hear what everyone else is saying. Nothing very interesting is being said, but it is illuminating to hear what is happening along the way. The lady across the way was getting admitted to the hospital because she is neutropenic (no white blood cells) and has a big fever and has jaw pain. That's a bad combination. But she had to wait a long time for a bed to ope...

 Well, that was just not working. Jon's stem cell numbers have not gone up all week.  Tomorrow they will start him on a different drug that they have great confidence will do the trick.  He has to go in early in the morning and then in the evening for two different shots.  Then on Monday they will check to see whether it did any good. In the meantime, after waiting for several hours for them to confirm this news, we skipped town again. Just got back to Virginia for a few hours of warm, nice weather. We are going outside to do something interesting. Enough of this sitting indoors and waiting. Shabbat shalom.

For reasons that no one can explain (or we haven't figured out how to ask the right questions yet), Jon's stem cell numbers are not getting better. When he compares them to the same time 11 years ago, they are 40 times smaller than when they collected back then (if the units are the same, and we just don't know that either) and they have not budged.  His body is not cooperating.  They say that if nothing happens tomorrow, they will take it to another level with a very expensive drug that mobilizes stem cells every time, but it sounds kind of dire to Jon. It sounds dire because it is hard to visualize what that would do to a body.  We will cross that bridge when we get to it. ****** If this were late December, as was originally scheduled, we wouldn't really care if we were exiled in an apartment in Baltimore. But we had kind of made ourselves feel better with the idea that we could go home this weekend for a few days, in between the pheresis (collection) and the next ste...

This time it seemed like it might be the day for the stem cell collection. But nope, the numbers weren't right yet, and perhaps they were even less promising than yesterday.  This is why they have built in so many days before the transplant. It is disappointing, but there is nothing to do about it but wait.  ***** Yesterday Jon finally went outside for the first time at about 5:30 in the evening because I said he had to see how nice it felt out there. We went to the outdoor patio area (where there is a grill much like the one we have at Timothy's) and sat at the tables and felt useless.  We felt like old people sitting on the porch at a sanitarium.  The smell from the Popeye's exhaust vent wafted across the street. After a few minutes, Jon was ready to go back inside. Meanwhile, I am honing my indoor entertainment skills.  I have added chair yoga to my list (harder than it sounds but easy to adapt), and practicing on Nell's nice keyboard. I haven't even looked a...

Jon went to the IPOP (In Patient Out Patient) clinic by himself today. He didn't need me for anything. They took his blood, asked the same questions as yesterday, and then they all waited for the results.  Getting closer but not there yet.  He has a painful shoulder, perhaps the bone pain they have warned about. They do not want people to take Tylenol because they want full information about fevers, but he got permission to take it (after taking his temperature) if the shoulder blade continues to feel really sore. It has been this way for about five days. Everything seems to be on track -- he is getting more tired, his blood counts are as expected, he is not feeling great. Food doesn't seem interesting. He is supposed to keep drinking, which doesn't even seem all that enticing, but that's not optional. ***** We did go home yesterday and collect up some more stuff, see some people doing fun farm things outside in the sun, sit in our clean living room (the cleaning ladies...

 We moved into the Hackerman-Patz Patient and Family Pavilion at the Sidney Kimmel Comprehensive Cancer Center.  They were all ready for us with a parking pass and a welcome packet.  We spent the evening sitting on the slightly uncomfortable couch watching a few simultaneous movies (Jon-style), having melted cheese sandwiches and learning about the rules of living here.  They have lots of covid-related policies and the most difficult one for us is that they don't want us to leave the premises until this is all over, even if the medical team says it is okay to go. They don't want any covid coming through these doors, and we get that. Today Jon went in for his first appointment. They took his blood and asked a bunch of questions. After about two hours they decided he didn't have to wait for the full results because they could tell from some preliminary information that there wouldn't be the necessary amount of stem cells.  He goes back/ tomorrow for the same check...

So he got the call from Dr. Imus with the decision -- they will start him on a broad spectrum anti-fungal drug today (many steps to get that order all the way to Jon, but it will happen) and they will stay on schedule.  His transplant will be on March 24. We need to be within an hour of Hopkins starting on March 14. They don't have housing for us yet, but that's because our schedule has been so fuzzy. -*-*-*-*-*  (that means that you now know everything that matters, the rest is optional bedtime reading) For those who may not have as much background in bone marrow transplants, here is the general scheme.  They kill all the old white blood cells with a big dose of chemo (that was Sunday) and then he gives himself daily shots of something that stimulates the growth of new stem cells. That goes on for about 8 days. Then they test to see if he has enough to collect.  When he does, they collect a lot of stem cells. Then another whomping dose of chemo to kill off all the b...

This week we don't expect to have news. Jon goes back up to Hopkins today so they can watch him give himself his first Neupogen shot (to stimulate stem cell growth). He knows how to do it and we tried to talk them out of it before we left  but they want to look at the package of syringes and make sure it all looks right to them. Trust nothing. Plus they want to check his blood because that's what they do every time they get a chance. At the end of that long day yesterday (7:30 - 5:30), I said to Jon that it felt kind of like a long airplane ride. Stuck in a small space with a lot of rumbling going on all around, a bathroom within a few steps, a flight attendant stopping by now and then. He was flying first class because he did have a bed. But the TV didn't work so we didn't watch movies all day, as we would have if we were flying to Hawaii.  So far it doesn't seem that he has felt any side effects. He did sleep most of yesterday -- said he felt drugged -- but no nau...

 Jon says I should write something so people will know they are in the right place.  That other blog address just showed me the kind of blog I would never want to write, so that was educational anyway. This giant hospital is very quiet today -- it's Sunday.  Empty waiting rooms, closed cafeterias, wide hallways that are usually crowded but today are echo-ey. I am starting to piece together how this place is all connected. It is logical but sprawling. I have noticed before on many occasions how helpful and friendly everyone is -- if you pause for a minute in the hallway, looking even slightly uncertain, someone will approach and ask if you need help. It must be a policy, never to let anyone feel or look lost. It is also very nice to be in a place where everyone is wearing a label. It reinforces how young doctors can be, and how many different careers there are in one complex organization. It reminds me that Alissa moves around in a space like this every day, wearing her do...