Today Judy began her boost treatment plan which will conclude this Friday. She will also get one more dose of chemo tomorrow. She has been doing well, overall. The time off from radiation allowed for much internal healing. She got stronger. She ate and moved more than she had in many weeks.
If all goes well, we will be able to go home as early as this weekend.
Monday, February 23, 2009
Tuesday, February 17, 2009
New Plan
If there’s one pervasive truth experienced in the hospital, it’s that nothing ever happens in the timeframe you expect it to. I know this and thought it even as I typed the final line in my last post. As you may have guessed, going home this week doesn’t look probable.
Judy’s final treatment of her initial radiation ‘plan’ was actually last Friday, not Monday as we had initially been told. The tumor has been responding well to the treatment – ie, it’s shrinking. Since Judy seems strong enough to continue, the doctors have decided to give her 3-8 (probably 5) more treatments of very focused radiation. They will ‘map’ this plan tomorrow, Wednesday February 18th. Treatments will begin Thursday or Friday. In the mean time, Judy is working on getting strong enough to come home. If this happens soon enough, she can finish the new treatment plan on an outpatient basis. If not, we'll be here until she finishes her new treatment plan which will be late next week or early the week after.
Judy’s final treatment of her initial radiation ‘plan’ was actually last Friday, not Monday as we had initially been told. The tumor has been responding well to the treatment – ie, it’s shrinking. Since Judy seems strong enough to continue, the doctors have decided to give her 3-8 (probably 5) more treatments of very focused radiation. They will ‘map’ this plan tomorrow, Wednesday February 18th. Treatments will begin Thursday or Friday. In the mean time, Judy is working on getting strong enough to come home. If this happens soon enough, she can finish the new treatment plan on an outpatient basis. If not, we'll be here until she finishes her new treatment plan which will be late next week or early the week after.
Thursday, February 12, 2009
January
Georgia
Stella
I got the call on Wednesday, January 7th 2009. The girls were ready to come home. We were so excited and SO unprepared. What a difference from the arrival of sweet Leo. We were completely prepared for him weeks in advance. We had all our supplies stocked up and his room was all ready. This time, we didn’t even know where the girls were going to sleep! Well, of course we figured all that out and I brought our babies home at about 8pm for their first night out of the hospital. We were all so excited – especially Leo. He only got to see them once in the NICU so he couldn’t wait. The night went very well; the girls ate twice at midnight and 4am and both times went right back to sleep. Again, a much different experience than our first. (we were back in the ER with Leo less than 24hrs after we left…but that’s another story). We were settling in and figuring out our new routine. Unfortunately (man, I’ve used that word a lot), we didn’t even get a chance to get our bearings…
When Judy was discharged from the hospital the previous Saturday, we were given a list of things to look out for that would require us to return immediately. On Thursday afternoon, less than 24 hours after our girls came home, Judy experienced one of these warning signs. Within the hour, we were back in the hospital.
We are still here.
We came into the ER and were soon met by one of our favorite doctors. Just prior to that, the ER doc did his standard assessment and orders. In talking to him about Judy’s case, he realized that he got the call from the paramedics the night of Stella’s dramatic arrival. It’s common for paramedics to need doctor’s orders regarding the patients they are attending to. ER doctors are on call for these appeals for assistance. What a small world it is that we were now being treated by the same doctor that assisted our favorite paramedics! Judy was stabilized and admitted. Unfortunately(!), the hospital was completely full so we were moved to the ‘transition’ area. We were of course familiar with this place – as we are with most areas of the hospital. With no beds available and dozens of people needing rooms, we were in for a long wait. The stalls are small; only enough room for a bed and a stool. I spent the night in Judy’s wheelchair with my head against the wall…comfy!!
We had an appointment scheduled for Friday morning for a full PET / CT scan. (Originally, we were going to do this scan back in November. After the Cyro, Charlie suggested that we do this scan in two months to see what, if anything, the tumor was doing. We decided against the test back then for a couple of reasons. One, we were already dealing with so many other things, that a long difficult trip the doctor was not appealing. Two, no matter what the test showed, we weren’t going to ‘do’ anything differently than what we were currently doing.) Now that the girls were safe, it was time to scan and see what the tumor was doing and if there were still no signs of other sites. The appointment was for 9am, but we had been stuck in the hospital transition area all night and 9am had just passed. Just then, our oncologist showed up for morning rounds. We decided that we should move forward with the scan and so with a quick phone call, transport came and wheeled us to the scanning department.
While we were gone, our oncologist pulled some strings and got Judy a room in the bone marrow transplant area. These are the nicest rooms in the hospital. They are larger than any other, with a vcr/dvd player, a large movie collection and beautiful views of the surrounding mountains. They also have two sets of doors needed for the extra sanitary environment required by transplant patients. A side benefit of this is a much quieter room. All of these things have made the last 5 weeks at least a little more comfortable.
Later that day, after getting settled in what would be our home away from home for more than a month, we got the results of the PET/CT. The tumor had grown considerably. However, there was still no sign of any other tumor sites. The growth of the tumor was what had caused all of the issues with Judy’s kidney and of course, the source of her continued pain, but at least it was still contained in the original area. The course of treatment for a carcinoma of this type is, as I may have mentioned before, radiation with a little chemotherapy to make the cancer more radiosensitive. The amount needed, we were told, shouldn’t cause hair loss or other major side-effects normally associated with chemo.
We had known that this would be our course of action if the tumor remained. Because they were treating Judy’s other issues, it was decided that Judy would begin treatment Monday morning on an inpatient basis. The plan was that we would proceed and when Judy’s other issues stabilized, complete the treatment on an outpatient basis.
The treatment plan was set for 5 weeks. Judy would receive radiation 5 days a week, Monday – Friday and Chemotherapy one day a week.
By this time, though, Judy’s pain was extreme and in addition to the issues relating to her kidney, became a main focus of treatment. It will come as no surprise to anyone that after a couple weeks of radiation, several months of being virtually bedridden and high doses of pain medication, Judy was extremely weak. It was becoming clear that we would probably not be able to go home before her treatment was completed.
Day after day, Judy bravely battles the fatigue, nausea and other side effects of her treatment. After 2 weeks of treatment, they scanned the tumor and found that it had shrunk about 30% in volume. We were all very excited to know that the treatment was working. A subsequent scan last week showed the tumor to be less than 50% of it’s original size.
Judy’s last scheduled day of radiation is this coming Monday the 16th. At that time they will decide if any Judy would benefit from one or more “boost” treatments. The consensus is probably not, but we shall see. After the final treatment, Monday or otherwise, we will have to wait 4-5 weeks before scanning the tumor site again as the radiation continues to work.
Hopefully we will be able to go home sometime next week.
When Judy was discharged from the hospital the previous Saturday, we were given a list of things to look out for that would require us to return immediately. On Thursday afternoon, less than 24 hours after our girls came home, Judy experienced one of these warning signs. Within the hour, we were back in the hospital.
We are still here.
We came into the ER and were soon met by one of our favorite doctors. Just prior to that, the ER doc did his standard assessment and orders. In talking to him about Judy’s case, he realized that he got the call from the paramedics the night of Stella’s dramatic arrival. It’s common for paramedics to need doctor’s orders regarding the patients they are attending to. ER doctors are on call for these appeals for assistance. What a small world it is that we were now being treated by the same doctor that assisted our favorite paramedics! Judy was stabilized and admitted. Unfortunately(!), the hospital was completely full so we were moved to the ‘transition’ area. We were of course familiar with this place – as we are with most areas of the hospital. With no beds available and dozens of people needing rooms, we were in for a long wait. The stalls are small; only enough room for a bed and a stool. I spent the night in Judy’s wheelchair with my head against the wall…comfy!!
We had an appointment scheduled for Friday morning for a full PET / CT scan. (Originally, we were going to do this scan back in November. After the Cyro, Charlie suggested that we do this scan in two months to see what, if anything, the tumor was doing. We decided against the test back then for a couple of reasons. One, we were already dealing with so many other things, that a long difficult trip the doctor was not appealing. Two, no matter what the test showed, we weren’t going to ‘do’ anything differently than what we were currently doing.) Now that the girls were safe, it was time to scan and see what the tumor was doing and if there were still no signs of other sites. The appointment was for 9am, but we had been stuck in the hospital transition area all night and 9am had just passed. Just then, our oncologist showed up for morning rounds. We decided that we should move forward with the scan and so with a quick phone call, transport came and wheeled us to the scanning department.
While we were gone, our oncologist pulled some strings and got Judy a room in the bone marrow transplant area. These are the nicest rooms in the hospital. They are larger than any other, with a vcr/dvd player, a large movie collection and beautiful views of the surrounding mountains. They also have two sets of doors needed for the extra sanitary environment required by transplant patients. A side benefit of this is a much quieter room. All of these things have made the last 5 weeks at least a little more comfortable.
Later that day, after getting settled in what would be our home away from home for more than a month, we got the results of the PET/CT. The tumor had grown considerably. However, there was still no sign of any other tumor sites. The growth of the tumor was what had caused all of the issues with Judy’s kidney and of course, the source of her continued pain, but at least it was still contained in the original area. The course of treatment for a carcinoma of this type is, as I may have mentioned before, radiation with a little chemotherapy to make the cancer more radiosensitive. The amount needed, we were told, shouldn’t cause hair loss or other major side-effects normally associated with chemo.
We had known that this would be our course of action if the tumor remained. Because they were treating Judy’s other issues, it was decided that Judy would begin treatment Monday morning on an inpatient basis. The plan was that we would proceed and when Judy’s other issues stabilized, complete the treatment on an outpatient basis.
The treatment plan was set for 5 weeks. Judy would receive radiation 5 days a week, Monday – Friday and Chemotherapy one day a week.
By this time, though, Judy’s pain was extreme and in addition to the issues relating to her kidney, became a main focus of treatment. It will come as no surprise to anyone that after a couple weeks of radiation, several months of being virtually bedridden and high doses of pain medication, Judy was extremely weak. It was becoming clear that we would probably not be able to go home before her treatment was completed.
Day after day, Judy bravely battles the fatigue, nausea and other side effects of her treatment. After 2 weeks of treatment, they scanned the tumor and found that it had shrunk about 30% in volume. We were all very excited to know that the treatment was working. A subsequent scan last week showed the tumor to be less than 50% of it’s original size.
Judy’s last scheduled day of radiation is this coming Monday the 16th. At that time they will decide if any Judy would benefit from one or more “boost” treatments. The consensus is probably not, but we shall see. After the final treatment, Monday or otherwise, we will have to wait 4-5 weeks before scanning the tumor site again as the radiation continues to work.
Hopefully we will be able to go home sometime next week.
Complications
The vast education and training an MD receives may actually be more focused on complications. Procedures themselves are fairly straightforward. What can happen after a procedure is wide ranging and complicated.
After Judy’s procedure that would drain her kidney of the backed up fluid, her doctors watched her closely. She showed some signs of complications and so was admitted. Over the next several days they chased the symptoms with test after test and drug after drug. Christmas was approaching and we were anxious to get home. Day after day, all the tests were negative. It was decided that we could go home for Christmas, but must return the following Monday so they could continue to monitor her. We went home Christmas eve and spent the next 4 days with our family.
The following Monday morning we were back in the hospital where would stay for another 6 days. All the same tests continue to be negative for any serious complications. Given Judy’s medical issues, they can’t be too careful. Several symptoms of possible complications persist, but with negative results we head home again.
During this stay before and after the New Year, daily reports from St. Joe’s point toward an early release of our twin girls. The girls have been thriving and with no complications. All of the doctors and nurses at the NICU are amazed by their progress. They are very close to meeting the requirements for discharge: self-maintaining of body temperature, gaining weight and eating full meals by bottle. These are two very strong little girls indeed. Not only did they survive a very turbulent beginning with many dangerous tests and medications, but they thrived almost as if they were full term.
However, with Judy being in and out of the hospital, the prospect of having the girls home so soon raised much concern. How would we continue to find enough help to watch Leo AND two newborn twin premies?
After Judy’s procedure that would drain her kidney of the backed up fluid, her doctors watched her closely. She showed some signs of complications and so was admitted. Over the next several days they chased the symptoms with test after test and drug after drug. Christmas was approaching and we were anxious to get home. Day after day, all the tests were negative. It was decided that we could go home for Christmas, but must return the following Monday so they could continue to monitor her. We went home Christmas eve and spent the next 4 days with our family.
The following Monday morning we were back in the hospital where would stay for another 6 days. All the same tests continue to be negative for any serious complications. Given Judy’s medical issues, they can’t be too careful. Several symptoms of possible complications persist, but with negative results we head home again.
During this stay before and after the New Year, daily reports from St. Joe’s point toward an early release of our twin girls. The girls have been thriving and with no complications. All of the doctors and nurses at the NICU are amazed by their progress. They are very close to meeting the requirements for discharge: self-maintaining of body temperature, gaining weight and eating full meals by bottle. These are two very strong little girls indeed. Not only did they survive a very turbulent beginning with many dangerous tests and medications, but they thrived almost as if they were full term.
However, with Judy being in and out of the hospital, the prospect of having the girls home so soon raised much concern. How would we continue to find enough help to watch Leo AND two newborn twin premies?
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