This is Brian with another update on Wendi. As confusing as it sounds, Wednesday left me feeling discouraged and hopeful at the same time. Wendi and I, along with both sets of parents, met with Dr. Bahador on Wednesday evening. (Wendi was only semi-conscious at the time.) Her bladder leak turned out to be a much bigger problem than I realized — not because of the condition itself, but because it's an indication that her body is not healing. Between the cancer, the trauma of the surgery she had in mid-September, etc., everything has ganged up on her and made it difficult for her to recover from the surgery. She's currently on a clear-liquid diet, she is only semi-conscious most of the time, and she hasn't gone on any walks since Saturday. Those things, combined with her bladder condition, are an indication that she is in poor health. Given her present condition, chemotherapy would be extremely harmful; it could even kill her. She is not a candidate for chemotherapy until she is much healthier and stronger than she is now (i.e. able to withstand the debilitating effects of chemo). To put it another way, unless and until she recovers from the surgery, she has no treatment options to slow the growth of her cancer.
The reason I heard from hospice reps the other day was because Wendi asked her doctor for more information. After hearing Dr. Bahador's explanation of her condition and his reasoning for why he can't give her chemo, I have to concur that hospice is the best route for Wendi, at least right now. I don't want her in the hospital anymore; it's not doing her any good. She's a handful for the nurses, and she has made it clear that she doesn't want to be there. Dr. Bahador has done everything for Wendi that he can, at least for now. She wants to go home; we need to let her do that.
The plan is to have Wendi stay at her parents' house, at least for starters. I'll call her case manager on Thursday morning and get the ball rolling on hospice arrangements. I hope to see her situated at her parents' house by Friday or Saturday. I believe Wendi's best chance for recovery is getting her out of the hospital and bringing her to a more familiar environment. At the risk of sounding overly dramatic, I believe she will give up and die sooner if she has to stay in the hospital much longer. Can she recover and receive chemotherapy before she loses her battle with cancer? There is no way to predict that; at this point, it's entirely up to her. It is possible for her to recover to the point where she can receive chemo, but if that's what she wants, she will have to fight harder than she has ever fought in her life.
Wednesday, October 7, 2009
Tuesday, October 6, 2009
Hospice? Already?
This is Brian with another update on Wendi. I have to confess that I'm a little torqued at the medical system right now. Sometimes it seems like the Marx Brothers are running the show. First, the good news. Wendi's MRI scan of the brain was negative for cancer, so we can be thankful for that. However, her doctor visited her early on Tuesday morning and had a chat with her. Wendi doesn't remember what was discussed, and my attempts to reach her doctor for clarification were not successful, so I'm still in the dark about her condition. However, the subject of hospice came up, so I was lucky enough to sit through two sales pitches from hospice reps. Yay... I wasted no time in explaining to both reps that we weren't making any decisions about anything until we knew exactly what her condition was, and what all the options were. What I don't get is, if there's no cancer in her brain, isn't chemotherapy still an option, if only to prolong her life? In that case, why bring hospice into the picture? Clearly, we have more questions than answers, and we can only get them from her doctor, who has yet to contact any of us. He wants to meet with all the family on Wednesday (which can't be a good sign), but I am not aware of any meeting place or time. I'll post another update after we actually get some meaningful information about Wendi's condition.
There is still no word on when Wendi can hope to come home, or if she will be able to come home at all. Hopefully that can be cleared up during the meeting with her doctor.
There is still no word on when Wendi can hope to come home, or if she will be able to come home at all. Hopefully that can be cleared up during the meeting with her doctor.
More complications
This is Brian with another update on Wendi. I know this is probably an overly emotional reaction to the situation, but I am becoming increasingly concerned and frustrated by all the complications that are keeping Wendi in the hospital. So far she has been in the hospital two weeks longer than originally estimated. I'm starting to wonder if she will ever be able to come home; she doesn't seem to be improving. When I saw her on Monday afternoon, she seemed very drugged up, and her short-term memory was not very good. She was very nauseous, and she was also complaining about pain in her lower abdominal region, which is noticeably distended. At least while I was there, I couldn't get a good answer from anyone as to why that was happening. I'll give them some time to get a handle on things and check with them again tonight.
My primary concern is that if Wendi is not allowed to come home in the near future, it will start to become difficult for her to recover. Obviously she can't come home in her current condition, but I believe she will be more motivated if she knows that her hospital stay is about to come to an end. She is discouraged by how long she has been kept in the hospital, and she hasn't gone on a single walk for the last two days. (She's supposed to take four walks every day.) I'm worried that this could become a negative situation that feeds on itself — she can't leave the hospital until she improves, but she can't improve until she leaves the hospital. The situation with her bladder seems to be under control, and her staph infection is going away. All that remains is for her to regain some mental acuity so that she can at least partially take care of herself once she's at home.
My primary concern is that if Wendi is not allowed to come home in the near future, it will start to become difficult for her to recover. Obviously she can't come home in her current condition, but I believe she will be more motivated if she knows that her hospital stay is about to come to an end. She is discouraged by how long she has been kept in the hospital, and she hasn't gone on a single walk for the last two days. (She's supposed to take four walks every day.) I'm worried that this could become a negative situation that feeds on itself — she can't leave the hospital until she improves, but she can't improve until she leaves the hospital. The situation with her bladder seems to be under control, and her staph infection is going away. All that remains is for her to regain some mental acuity so that she can at least partially take care of herself once she's at home.
Monday, October 5, 2009
The tubes are back
This is Brian with another update on Wendi. Her port-a-cath was removed on Sunday. However, just when we thought she would be able to go home on Monday or Tuesday (as in today or tomorrow), yet another complication developed. This time it was her bladder; it started leaking internally. The doctors were checking for that before; why it never presented itself as a problem until now... we're not sure. At any rate, her doctor ordered an emergency procedure to have both the nephrostomy tubes put back in. I'm sure they will be there for several weeks while the bladder heals. (The lower abdominal drainage tube is still out, though; it does not need to be put back in.) I hate to see her come home with all those tubes, since the nephrostomy tubes in particular make it harder for her to sleep comfortably and limit her ability to move around. However, we will have to live with such drawbacks, since we only want her coming home from the hospital once — not going back in multiple times to deal with more complications.
Right now, the main things that are keeping her from going home are the staph infection and the bladder leakage issue. I'm sure they'll want to run a few more scans, tests or whatever, but to me it looks like everything that can be done to mitigate the bladder situation has been done. At this point, her body just has to heal the damage, presumably over several weeks. The staph infection is a very serious complication, though; that has to be brought completely under control before she can even hope to be discharged from the hospital. Since she had to get the nephrostomy procedure the other day, I'm sure that messed up the doctors' ability to give her antibiotics, so that will probably delay her treatment to some degree. We're keeping our fingers crossed to see her come home sometime this week, but for lack of a more sophisticated term, we just don't know right now.
Wendi has been in the hospital since September 15. The recovery period was originally intended to be 5-7 days, but obviously the various complications have delayed that. Tuesday (tomorrow) will mark her third week in the hospital. She has only gone outside once during that entire time. Hopefully we can start taking her outside more often while she recovers. She wasn't up for it on Sunday... probably too groggy from the anesthetic she received during the port-a-cath removal and the nephrostomy procedure. We haven't heard about any MRI results; we expect to hear more this coming week.
Right now, the main things that are keeping her from going home are the staph infection and the bladder leakage issue. I'm sure they'll want to run a few more scans, tests or whatever, but to me it looks like everything that can be done to mitigate the bladder situation has been done. At this point, her body just has to heal the damage, presumably over several weeks. The staph infection is a very serious complication, though; that has to be brought completely under control before she can even hope to be discharged from the hospital. Since she had to get the nephrostomy procedure the other day, I'm sure that messed up the doctors' ability to give her antibiotics, so that will probably delay her treatment to some degree. We're keeping our fingers crossed to see her come home sometime this week, but for lack of a more sophisticated term, we just don't know right now.
Wendi has been in the hospital since September 15. The recovery period was originally intended to be 5-7 days, but obviously the various complications have delayed that. Tuesday (tomorrow) will mark her third week in the hospital. She has only gone outside once during that entire time. Hopefully we can start taking her outside more often while she recovers. She wasn't up for it on Sunday... probably too groggy from the anesthetic she received during the port-a-cath removal and the nephrostomy procedure. We haven't heard about any MRI results; we expect to hear more this coming week.
Saturday, October 3, 2009
A new hospital room
This is Brian with another update on Wendi. We took her outside today; it was the first time since her surgery that she had gone outside. She's still quite weak, and she needs assistance to stand up and walk around for short distances. She has quite a bit of physical therapy in her future. Her port-a-cath removal surgery was postponed until Sunday because of some emergency surgeries in the operating room. However, she had an MRI done on Saturday; we expect to get the results this coming week.
Wendi has been moved to a different hospital room, so if you don't find her in the old room or you can't reach her on the hospital phone, you'll know why. She still has her cell phone, so you can always reach her that way. Send me a private message if you need the new hospital room and phone info.
Her discharge from the hospital still appears to be on track for this coming Monday or Tuesday. As we have seen previously, though, that could easily change.
Wendi has been moved to a different hospital room, so if you don't find her in the old room or you can't reach her on the hospital phone, you'll know why. She still has her cell phone, so you can always reach her that way. Send me a private message if you need the new hospital room and phone info.
Her discharge from the hospital still appears to be on track for this coming Monday or Tuesday. As we have seen previously, though, that could easily change.
Friday, October 2, 2009
A truly sad day for all of us
This is Brian with another update on Wendi. I'm afraid I have some really bad news to report. Dr. Bahador and about half a dozen nurses and coordinators within Scripps met with me, Wendi, Wendi's parents and my dad on Friday at 4 p.m. There is evidence of cancer in both of her lungs, as well as her liver. Her head has not been scanned to see if there is evidence of cancer in her brain, so she is scheduled for an MRI early next week. Regardless of the MRI results, the likelihood of long-term survival is very low. Radiation treatment is out of the question, since the cancer is spreading throughout the body. That leaves chemotherapy as the only treatment option; however, it is not realistic to expect a full recovery from chemotherapy alone. In all likelihood, even a favorable response to chemo would only slow the spread of the cancer; it would not increase her likelihood of long-term survival.
Wendi is taking the news very well. She has been extremely strong and courageous, which is a character trait that I have always respected and admired in her. She is still recovering in the hospital; she developed a staph infection at the IV site that was replaced the other day, so she's on antibiotics. The problem is that she has a subdermal (below the skin) device called a port-a-cath in her, which is intended to make it easier to give her chemotherapy treatments. The staph infection has been found in her blood, and the bacteria will latch on to any foreign object such as the port-a-cath. For that reason, the port-a-cath needs to be removed ASAP; that is scheduled for Saturday. Both of her nephrostomy tubes were removed on Friday, and her lower abdominal drainage tube was also taken out. It looks like she will be able to go home with just an IV line for giving her antibiotics. She cannot go home until the staph infection has cleared up; best guess, that will be this coming Monday or Tuesday at the earliest.
I want to take this opportunity to let all of you know how much we have all appreciated the kind words, encouragement, gifts, etc. I know all of you wanted the best for Wendi, and believe me when I tell you, I wish I had better news to report. I'm sure I'll have more to say about this later; I'm still in shock right now. I was prepared for this possibility; I just didn't know it would happen this quickly. As devastated as I am by the news, I can't begin to imagine how her family must feel right now. No parent ever wants to outlive a child. My thoughts and prayers are with her parents and her brother, as well as her niece, her nephew and the rest of her immediate and extended family.
No decision has been made yet regarding the next treatment step for Wendi. We will need to wait until the MRI results come in next week before making that decision. Of course, I'll post an update here when we know more.
Wendi is taking the news very well. She has been extremely strong and courageous, which is a character trait that I have always respected and admired in her. She is still recovering in the hospital; she developed a staph infection at the IV site that was replaced the other day, so she's on antibiotics. The problem is that she has a subdermal (below the skin) device called a port-a-cath in her, which is intended to make it easier to give her chemotherapy treatments. The staph infection has been found in her blood, and the bacteria will latch on to any foreign object such as the port-a-cath. For that reason, the port-a-cath needs to be removed ASAP; that is scheduled for Saturday. Both of her nephrostomy tubes were removed on Friday, and her lower abdominal drainage tube was also taken out. It looks like she will be able to go home with just an IV line for giving her antibiotics. She cannot go home until the staph infection has cleared up; best guess, that will be this coming Monday or Tuesday at the earliest.
I want to take this opportunity to let all of you know how much we have all appreciated the kind words, encouragement, gifts, etc. I know all of you wanted the best for Wendi, and believe me when I tell you, I wish I had better news to report. I'm sure I'll have more to say about this later; I'm still in shock right now. I was prepared for this possibility; I just didn't know it would happen this quickly. As devastated as I am by the news, I can't begin to imagine how her family must feel right now. No parent ever wants to outlive a child. My thoughts and prayers are with her parents and her brother, as well as her niece, her nephew and the rest of her immediate and extended family.
No decision has been made yet regarding the next treatment step for Wendi. We will need to wait until the MRI results come in next week before making that decision. Of course, I'll post an update here when we know more.
Thursday, October 1, 2009
This week? Maybe? Hopefully?
This is Brian with another update on Wendi. Her infection seems to be going away, now that she has a new IV line. Her temperature is in a more normal range. Her nephrostomy tubes have been clamped, so they will most likely be removed within a week or so. Dr. Bahador wants to meet with us on Friday afternoon, presumably to talk about what has happened so far and what still needs to happen. When I asked the discharge planner if the Friday meeting was an indication that Wendi would be discharged from the hospital on Friday, the response was "not necessarily." It's our hope and expectation that she will be discharged on Friday or Saturday, but ultimately that's up to her doctor.
Subscribe to:
Posts (Atom)
