That “R” Word

We felt pretty comfortable with the doctor’s words on Tuesday, but yesterday we got the word officially- Darcy is in remission. She is continuing physical therapy to get back on her feet after her broken femur (in fact she is taking a few steps from the bed to a chair as I write this), and may be moving to Mary Free Bed for further rehab as soon as tomorrow.

Then on Monday she will begin the next phase of the leukemia treatment with the first of her monthly 5-day outpatient chemo treatments. It is the same chemo she had at the end of September (Dacogen®), only for 5 days instead of 10. As long as this is successful they will maintain this schedule in order to keep the leukemia suppressed and her bone marrow healthy. If things go well for the next couple years they may in time be able to stretch the intervals between treatments to 6 weeks or more, or perhaps even to stop it altogether. What effect will these shorter courses of chemo have on her system? We don’t know, but Dacogen is a gentler form of chemo (this is a relative thing if ever there was one) than many others; Darcy didn’t lose her hair even with the longer 10 day course she just went through. We’re hoping for the side effects to be few & mild.

More in a few days when I have a bit more time, but for now here are a couple of pics of todays efforts:

Relaxing in the BRODA chair. 

First step.

Smiling through the pain. 🙂

 

 

Not Quite, But Getting Close!

Dr Scott was in tonight and told us that the bone marrow biopsy shows that Darcy now has about 20% bone marrow cells-double the amount from a week ago- and that the signs look favorable. “I think we are where we want to be,” he said, though he stopped short of calling it remission until he consults with a colleague in Ann Arbor. Dr Scott is famously circumspect when it comes to venturing beyond what he knows to be true. He refuses to speculate, but he was clearly pleased with the results and we expect to move on to the next phase soon, perhaps later this week. The next phase is a move to Mary Free Bed rehab center where Darcy will undergo intensive physical and occupational therapy to  prepare her for a return home. 🙂 We don’t know how long that will take, but she has made excellent progress so far. We will know much more by the end of the week. As to the next phase of treatment for leukemia, they will begin a maintenance regimen of chemo in the next couple of weeks. It will likely be a course of outpatient chemo for 5 consecutive days once a month. Again, we will know much more within a few days. I will have more to say as we learn more about the road ahead, but for now we definitely feel this is good news. Thanks for the prayers and positive thoughts!

The Score at Halftime: 0-0

The results of the bone marrow show that the chemo has pretty much wiped out her bone marrow. Dr Scott said that there were fewer than 10% bone marrow cells in the biopsy (I’m not sure what the other 90% is composed of; apparently not anything that is normally there, but nothing that is harmful either), and only a few single blast (leukemia)cells, no clusters of them. What this means is that the chemo has worked in that it has wiped out the bone marrow; what is unknown is whether or not any of the blast cells will come back when the rest of the marrow and blood cells are rebuilt. According to my understanding of his explanation, chemo wipes out all of the cells, and then as they regenerate the healthy ones crowd out any stray leukemia cells. Remission is achieved when healthy cells repopulate the marrow and no (or an insignificant number) of leukemia cells reproduce. Right now it is simply too soon to tell. When her labs show that her blood counts have returned to something approaching normal, they will draw another bone marrow, and we’ll repeat the exercise then.

This is neither good news nor bad news, but as Dr Scott said, it leaves the door open to good news. We just have to wait and find out. So by now you’ve figured out the title of this post. A scoreless tie at halftime is not bad news by any reckoning; but celebrating victory is premature.

Thursday update- Oct 25 evening

Darcy is back on 4 Lacks since Tuesday, and has been keeping busy with physical therapy, occupational therapy, and numerous doctor visits. She has been on some pretty heavy duty pain meds since the surgery, and consequently has been quite drowsy and (at times) pretty loopy. If you have called or texted and received no reply, it isn’t that she is ignoring you, she just hasn’t been able to focus on a lot of things at once.

The ortho surgeon is very happy with the surgery and her progress since, but it could be a rather long recovery. Normal, healthy patients with this sort of break can expect a recovery time of around 6 weeks, and he said that with her various complications it could be three months before the bone is fully healed. She has a full slate of exercises, and physical therapy that is pretty conservative so as not to push her too hard. But it is very important that she get back on her feet as soon as possible in order to heal fully and as quickly as possible.

As I noted earlier, she has developed VRE pneumonia, and is on antibiotics to combat that. The docs feel she is making some progress against it, and we are hoping that some test results will prove that to be the case in due time.

The root of all this trouble is, of course, the leukemia that she was diagnosed with again a little over a month ago. We don’t know yet whether the chemo is working to kill the leukemia cells in her bone marrow, but we know it has done a number on the blood cells that are checked in her daily labs. We found out tonight that Dr Scott plans to do the bone marrow biopsy tomorrow, after consulting with doctors at UMHS. We will find out the results sometime next week. Until then we wait. We’re used to that, but it doesn’t get any easier with practice.

Monday update

Darcy continued to improve today, feeling a bit better than yesterday. She has had no fevers since yesterday morning and is experiencing less pain than before the surgery by far. The pain meds are doing their job, and she was able to sit up in bed the last two days. They tried to get her up and putting a little weight on her leg today, but she couldn’t manage it; they’ll try again tomorrow. As she moves around a bit more, her cough becomes more frequent and more productive and that is what’s needed to loosen up the pneumonia and clear her lungs.

Infection is still the greatest threat to her health, and will be for the next few weeks. But every day without any signs of it is a step in the right direction. We’re praying that things continue in the right direction.

Finally, today was when they had planned to do her bone marrow biopsy, but they have postponed it for a few days. At this point, Dr Scott said it wouldn’t really show anything since her neutrophil count is nearly zero; he will decide later in the week when it is time to do it. We’ll have to wait to see how well the chemo has worked on killing the leukemia.

Post surgery update

On Saturday Darcy had surgery to repair her fractured femur. The doctor was very pleased with how things went during surgery, and this morning told her that she was doing great.

‎Darcy is feeling fairly good today; she is in some pain (though not nearly as much as before the surgery) and is still tired, but overall is doing very well. She had a fever spike this morning but has been normal since. She will be on 7south at St. Mary’s for another day or two and then back over to 4 Lacks. She was able to sit up in bed with both feet on the floor this afternoon for about 25 minutes with help from nurses to help her move.

In the next few days it is important for her to avoid any new infections and/or worsening pneumonia; at this point that is the greatest threat to her well-being. She still has pneumonia, but being able to move some should help her to get rid of it. Of course, her attitude is very positive and she was entertaining the nurses while they were in the room. 🙂

Surgery 8AM Saturday

We got the green light Thursday night for them to surgically repair her fractured femur, and they have scheduled it for Saturday morning at 8AM. It may be pushed back 3 or 4 hours if something changes, but please pray for a good result and no complications.

I am headed to bed soon so that I can try to get some sleep; I’m planning to be at the hospital by 6 am so I can see Darcy before they take her down to prep her. I will try to update tomorrow after surgery.

 

Of All the Rotten Luck

The x-rays showed that Darcy has a spiral fracture of the femur (that’s the thigh-bone for those of us who never took anatomy), and the primary activity today has been to make her comfortable and as pain-free as possible. The drug they gave her has made her very drowsy, and she has been drifting in and out most of the day. The doctors are deciding how to treat the broken bone, and weighing the risks of each.

Apparently there aren’t many good non-surgical options that would allow her to be mobile. If she is confined to bed rest for an extended period of time it will be hard to get rid of the pneumonia in both her lungs, since physical activity helps to break up the gunk and cough it up. Pneumonia, and infections more generally, are among the greatest risk to Darcy’s life right now.

If they decide to surgically repair her leg by inserting a metal rod (they call it a nail for some odd reason), that comes with its own set of risks, most of which are due directly to her low blood counts. Because her platelets are low the risk of bleeding is greater and surgery could cause a greater loss of blood than is good for her. Her white blood cells are low, which means that her body’s ability to fight off infection is greatly compromised.

It is up to the doctors to decide on the best course and recommend it to us. We will find out this evening, and if they decide to operate, they will do that either tonight or tomorrow. I will post more as I learn of it.

 

Thursday AM- Rough Start

This has been a rough day so far. As I walked in to Darcy’s room this morning about 8:30, it was filled with nurses and others working to get Darcy situated on the bed. She had gotten up to go use the bathroom and needed some fresh clothes so she walked over to the cabinet to get them. As one of the nurses walked in the door, she saw Darcy’s legs give way and she fell to the floor. She was in great pain immediately, and they suspect she may have a hip or upper leg fracture. She is on her way down to x-ray now, and they are doing a CAT-scan to make sure she didn’t bump her head and cause any internal bleeding there or elsewhere, due to her platelets being so low. I will update when we have more information.

Also, she has some signs of pneumonia in her lungs. Yesterday they performed a bronchoscopy to look at and sample some of the fluids in her bronchi and lungs, and they are culturing those to see what may grow from it. They have her on some broad spectrum antibiotics that we hope will knock out any bacterial infection, and they are keeping a very close eye on her.

She has been on heavy sedation and pain meds since the fall, and thus is pretty loopy. Depending on what the xrays reveal, they may need to keep her heavily medicated for a while. We need your prayers today more than ever, and thank you for those already offered.

“In sickness and in health…”

 

Update for Wednesday 10/17

Darcy was admitted to the hospital on Monday due to a spike in fever, possibly due to an infection. Since then they have been running numerous tests to determine the cause of the fevers. Her blood levels bottomed out last week, and she has gotten some blood transfusions to bring them up temporarily until her body can resume producing the blood she needs.

She is extremely tired, and has spent much of the day sleeping. They are giving her oxygen to help her breathe and appropriate medication to ease the pain, most of which is due to the GVHD, and some from soreness around her ribcage due to so much coughing the last few days.

Much of this is expected, or at least we have known of the possibility of infection, in the days after the chemotherapy is finished. It has been 2 weeks since the last dose of chemo, and as always it is a matter of waiting for the blood levels to bottom out and then recover. We have been through this before.

This afternoon they examined her bronchial tubes and lungs via endoscope, and took some samples to be cultured. I spoke to the Dr. who performed the test, and he said he didn’t see anything that looked too bad, and that they will know more in a couple of days. He also said that by the time the results come back the fevers may be gone for good, and of course that is a good thing. They are using a combination of broad spectrum antibiotics until (& unless) they find a specific bug that needs something different.

I will continue to post news as it unfolds and as time permits. Unlike three years ago, writing about this isn’t as therapeutic for me, and consequently is more of a chore than before. You will know that has changed if the posts become longer and more frequent, but for now they are likely to remain fairly concise.