We enjoyed going two weeks without a visit to the Bone Marrow Transplant clinic. But we used our free time wisely and went to the dentist and opthamologist to have Eric checked for signs of Graft versus Host disease. He passed both exams with flying colors. We also had our dermatologist take a biopsy of the strange bump on Eric's ribcage. It has been present for several months, but hadn't changed until a few weeks ago--hence the biopsy.
The preliminary report is that the lump is a skin reaction to the bone marrow cancer. But it is not like what the doctors have ever seen before, so Eric's abnormality is abnormal. They are doing some more tests on the specimen and then will come up with a treatment plan for it. Quite possibly radiation, maybe something more as they decide what is going on. We wish it wasn't what it is, but such is life.
The great news is that Eric continues to feel better every day. His blood work numbers are good. They did a very thorough skin and joint examination today, and the PA commented that everything looked excellent. We go to the BMT clinic again on Monday because Eric's kidney function is a little off. They are tinkering with his medications, so they want to check how his kidneys respond to the changes. I will give updates as we hear more.
Thursday, January 16, 2014
Thursday, January 2, 2014
Happy New Year
Prepare to be amazed! Today was our weekly Bone Marrow Transplant clinic appointment. It was on Thursday because they were closed, except for emergencies and inpatients, for New Year's Eve and New Year's Day. Eric's hematocrit is now 30.6! This is incredible news. It hasn't been this high for over six months, except for a couple of hours after each blood transfusion.
Also, we were told that Eric is doing so well we can skip next week's appointment and start going every other week. This is huge! Those early morning drives to LDS Hospital once a week were tedious. As 2013 came to a close Eric and I reviewed our daily journals and day planners. The abrupt change in our schedules between May 29 (before the cancer diagnosis) and May 30 ( the day Eric's primary care physician tested his blood and told him he had something severely wrong, probably bone marrow cancer) is startling. Cancer takes over your life! We have felt spoiled only going to the BMT clinic once a week. Next week will be the first week in over six months that we haven't had Eric's blood tested or had to go to a cancer related appointment.
Also, we were told that Eric is doing so well we can skip next week's appointment and start going every other week. This is huge! Those early morning drives to LDS Hospital once a week were tedious. As 2013 came to a close Eric and I reviewed our daily journals and day planners. The abrupt change in our schedules between May 29 (before the cancer diagnosis) and May 30 ( the day Eric's primary care physician tested his blood and told him he had something severely wrong, probably bone marrow cancer) is startling. Cancer takes over your life! We have felt spoiled only going to the BMT clinic once a week. Next week will be the first week in over six months that we haven't had Eric's blood tested or had to go to a cancer related appointment.
Tuesday, December 24, 2013
28.9!
Clinic visits were very quick so they could move a week's worth of patients through in just a couple of days. Eric just donated a few vials of blood and we were able to leave. Thirty minutes later, through the magic of the internet, we were able to see his lab results. His hematocrit is 28.9! Normal is 41-53, so 28.9 may not seem like much. But since Eric's has been hovering around 26 and 27 for weeks, this is great news! Eric is feeling so strong he will probably want to go snowshoeing Christmas morning. We hope you all have a very Merry Christmas!
Tuesday, December 17, 2013
p.s.
I forgot to mention that the bone marrow biopsy and the blood tests did not have any signs of cancer! Not even one cancer cell was detected!
Pretty Exciting Stuff Today!
Today was a long day at LDS Hospital. After the usual round of drawing blood and talking to the physician's assistant, we met with two of the Bone Marrow Transplant clinic's doctors. They gave us a thorough walk through of the results from the procedures Eric has had in the past week: extra blood work, bone marrow biopsy, chest x-ray, and pulmonary function test. Everything is looking good and we are feeling very positive, so I will share several of the highlights from today.
Eric has not shown any indications of graft versus host disease (rejection of the stem cell transplant) so they are going to start tapering his anti-rejection medication. This is very exciting because it means fewer pills for Eric to swallow, he will have fewer tremors and less swelling in his extremities, and his immune system will start to build up. If all goes well the taper will take nine months, so we really hope all goes well!
Eric has been tolerating his oral magnesium well, so today his central line was removed! It was inserted on August 19, so Eric has had to put up with it on the right side of his chest for quite awhile. When the site has healed, Eric will be able to shower without applying a protective covering over the area and he will also be able to take a bath. This should also make it easier for him to sleep. It takes about a week to heal, so Eric is really looking forward to taking a bath on Christmas day--a great present!
And last but not least, we found out how far along in the engraftment process the stem cell transplant is. The bone marrow biopsy suggested that 96% of the bone marrow is now being produced by Eric's sister Debbie's stem cells. There is still a lot of fibrosis in the bone marrow, but it is gradually being reduced as the healthy donor stem cells stimulate new bone marrow and new blood cell production. In contrast, Eric's blood work analysis determined that only 67% of his blood originates from Debbie's stem cell transplant. But upon further testing in the lab, the blood sample came back XX, so it is obviously Debbie's.
We feel very blessed that things have gone so well for us and that we received such great news today! Thank you for your love, support, and prayers.
Eric has not shown any indications of graft versus host disease (rejection of the stem cell transplant) so they are going to start tapering his anti-rejection medication. This is very exciting because it means fewer pills for Eric to swallow, he will have fewer tremors and less swelling in his extremities, and his immune system will start to build up. If all goes well the taper will take nine months, so we really hope all goes well!
Eric has been tolerating his oral magnesium well, so today his central line was removed! It was inserted on August 19, so Eric has had to put up with it on the right side of his chest for quite awhile. When the site has healed, Eric will be able to shower without applying a protective covering over the area and he will also be able to take a bath. This should also make it easier for him to sleep. It takes about a week to heal, so Eric is really looking forward to taking a bath on Christmas day--a great present!
And last but not least, we found out how far along in the engraftment process the stem cell transplant is. The bone marrow biopsy suggested that 96% of the bone marrow is now being produced by Eric's sister Debbie's stem cells. There is still a lot of fibrosis in the bone marrow, but it is gradually being reduced as the healthy donor stem cells stimulate new bone marrow and new blood cell production. In contrast, Eric's blood work analysis determined that only 67% of his blood originates from Debbie's stem cell transplant. But upon further testing in the lab, the blood sample came back XX, so it is obviously Debbie's.
We feel very blessed that things have gone so well for us and that we received such great news today! Thank you for your love, support, and prayers.
Tuesday, December 10, 2013
Day 104 and counting
Next week is Eric's big doctor's appointment where they reveal how well his stem cell transplant is doing. Today, in anticipation of that, and to collect pertinent information, Eric had not only a large number of blood draws but also a bone marrow biopsy and a chest x-ray. Next week he will have a pulmonary function test before meeting with his doctor.
If everything is going well, and it is anticipated that will be the consensus, Eric's central line will be removed right after his doctor's appointment. They will also start tapering him off of some of his anti-rejection medications. I am not sure which Eric is looking forward to more--getting his central line removed so that he can bathe and shower without restrictions or reducing the medication that makes his hands shake and his legs swell.
I will try to remember everything that we learn next week so that I can post it. Of great interest to me will be how far Eric's type A blood has transitioned toward his sister Debbie's type O blood. It will probably be somewhere in the middle of the transition. Right now the conflict between the two blood types is what keeps Eric's hematocrit (red blood cell count) low and flat.
Stay tuned.
If everything is going well, and it is anticipated that will be the consensus, Eric's central line will be removed right after his doctor's appointment. They will also start tapering him off of some of his anti-rejection medications. I am not sure which Eric is looking forward to more--getting his central line removed so that he can bathe and shower without restrictions or reducing the medication that makes his hands shake and his legs swell.
I will try to remember everything that we learn next week so that I can post it. Of great interest to me will be how far Eric's type A blood has transitioned toward his sister Debbie's type O blood. It will probably be somewhere in the middle of the transition. Right now the conflict between the two blood types is what keeps Eric's hematocrit (red blood cell count) low and flat.
Stay tuned.
Tuesday, December 3, 2013
Wahoo!
Big day at the clinic! Eric asked if he was still under such a strict quarantine. The doctor replied that if Eric was going crazy at home, he could go to a movie! IF it is a mid-week matinee, and IF he doesn't touch anything, and IF he wears his hepa filter. And IF there aren't any other people in the theater, Eric can TAKE OFF HIS FILTER so that he can actually see the movie! Pretty exciting!
Besides the great news in the previous paragraph, Eric is now taking his magnesium orally instead of getting it through a drip into his central line. This is a big step forward because a lot of people can't tolerate oral magnesium and have to stay with the central line drip for a long time. If Eric continues to do well, they will remove the central line in a couple of weeks. At that point Eric will be able to take baths and shower without taping "press and seal" wrap to his chest to cover the central line.
Last week Eric received another prescription for a diuretic and started wearing thigh high prescription compression socks to fight the edema (swelling from fluid retention) in his legs. He has much more flexibility in his joints and less pressure in his legs now. Eric is very happy with this new development!
Next week is his long-awaited Day 100 appointment. It will be a long clinic visit with all sorts of extra tests. The following week we find out how far along Eric is in the process of his blood/bone marrow changing in response to the stem cell transplant from his sister Debbie. If the progress is sufficient, the BMT doctors will start tapering the anti-rejection medications and eventually life will become more normal. Exciting times!
Besides the great news in the previous paragraph, Eric is now taking his magnesium orally instead of getting it through a drip into his central line. This is a big step forward because a lot of people can't tolerate oral magnesium and have to stay with the central line drip for a long time. If Eric continues to do well, they will remove the central line in a couple of weeks. At that point Eric will be able to take baths and shower without taping "press and seal" wrap to his chest to cover the central line.
Last week Eric received another prescription for a diuretic and started wearing thigh high prescription compression socks to fight the edema (swelling from fluid retention) in his legs. He has much more flexibility in his joints and less pressure in his legs now. Eric is very happy with this new development!
Next week is his long-awaited Day 100 appointment. It will be a long clinic visit with all sorts of extra tests. The following week we find out how far along Eric is in the process of his blood/bone marrow changing in response to the stem cell transplant from his sister Debbie. If the progress is sufficient, the BMT doctors will start tapering the anti-rejection medications and eventually life will become more normal. Exciting times!
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