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!
Wednesday, November 27, 2013
Happy Thanksgiving
Great news at the clinic today. Eric's hematocrit is finally starting to go up! It is a full point higher than it was last week. I will soon have a hard time keeping up with Eric on our walks each morning. Everything else is looking good also.
We have a lot to be thankful for this Thanksgiving season. It has almost been six months since Eric was diagnosed with bone marrow cancer. Since then he has had two rounds of low dose chemo, one round of killer chemo, a bone marrow transplant, and now is well on the way to recovery. We have met so many people with variations of bone marrow cancer who have languished in the medical system. They have endured many rounds of aggressive chemo, or are still waiting for a donor, or have had setbacks since their bone marrow transplant. We don't know why we have been so fortunate so far, but we are grateful.
Eric and I are thankful for all the love and support we have received from family and friends. We have been overwhelmed and humbled by the kindness shown to us. We are grateful for the prayers offered on our behalf. I wish there were a way to express how much we love and appreciate each person who has impacted our lives for good, but all I can think to say is, may God bless you.
From Eric:
I echo MaryLynn's expressions of gratitude above. In this regard, give some thought to the word "awareness." There is much good going on around us that sustains us from moment to moment -- things such as sufficient energy to undertake the tasks of the day, the ability to consume and digest our food and to draw strength from it, our immune system's immediate response to threats to our health, and the power to read and reason. I didn't think much on these good things until each was compromised as a result of my illness.
Now, I am very "aware" of these seemingly simple aspects of daily life. As my body repairs, I am conscious of positive (and at times negative) changes. My hope is to remain "aware" of these small things that, as I have learned from experience, have immense consequences. May none of you attain "awareness" in the manner I have. Rather, for this Thanksgiving, examine the small things -- be "aware" -- and let the proper measure of gratitude move your heart to acknowledge forces greater than our conscious will that sustain us. For me, I thank God for his love and "awareness" of me. Take care and have a happy Thanksgiving.
We have a lot to be thankful for this Thanksgiving season. It has almost been six months since Eric was diagnosed with bone marrow cancer. Since then he has had two rounds of low dose chemo, one round of killer chemo, a bone marrow transplant, and now is well on the way to recovery. We have met so many people with variations of bone marrow cancer who have languished in the medical system. They have endured many rounds of aggressive chemo, or are still waiting for a donor, or have had setbacks since their bone marrow transplant. We don't know why we have been so fortunate so far, but we are grateful.
Eric and I are thankful for all the love and support we have received from family and friends. We have been overwhelmed and humbled by the kindness shown to us. We are grateful for the prayers offered on our behalf. I wish there were a way to express how much we love and appreciate each person who has impacted our lives for good, but all I can think to say is, may God bless you.
From Eric:
I echo MaryLynn's expressions of gratitude above. In this regard, give some thought to the word "awareness." There is much good going on around us that sustains us from moment to moment -- things such as sufficient energy to undertake the tasks of the day, the ability to consume and digest our food and to draw strength from it, our immune system's immediate response to threats to our health, and the power to read and reason. I didn't think much on these good things until each was compromised as a result of my illness.
Now, I am very "aware" of these seemingly simple aspects of daily life. As my body repairs, I am conscious of positive (and at times negative) changes. My hope is to remain "aware" of these small things that, as I have learned from experience, have immense consequences. May none of you attain "awareness" in the manner I have. Rather, for this Thanksgiving, examine the small things -- be "aware" -- and let the proper measure of gratitude move your heart to acknowledge forces greater than our conscious will that sustain us. For me, I thank God for his love and "awareness" of me. Take care and have a happy Thanksgiving.
Tuesday, November 19, 2013
Best Day Ever
Sadly, Eric's numbers are all pretty much the same. But who cares? We were in the Bone Marrow Transplant Clinic for less than an hour!!! Do you have any idea how huge that is? We were ecstatic! If we were the kind of people who sing in the car, we would have been singing the entire way home!
This past week we have seen some great improvements. Eric's skin tone is great, his legs are not as swollen and stiff, he has been sleeping better at night, and his luxuriant hair is starting to come back! (Feel free to look up the definition of luxuriant.)
On Saturday, we tried out the route that was our go-to walk most Saturdays before Eric's diagnosis of cancer. We haven't done it since the beginning of June. It was a cold, drizzly, windy morning but we completed the almost four mile walk in an hour and fifteen minutes! That is only ten minutes more than our usual pace if we aren't in a hurry. Not bad for a guy whose hematocrit is only 26. Eric didn't even slow down on the hills. He is quite the guy and I am so proud of him!
From Eric re: typical day -- Eat, walk, shower, read, edit (draft historical materials), eat, clean and annotate (photos), read, eat, watch TV and read. In between, I occasionally visit with folks by phone or in person . I am not contagious so feel free to drop by (assuming you are not contagious). Thanks for all of the support.
This past week we have seen some great improvements. Eric's skin tone is great, his legs are not as swollen and stiff, he has been sleeping better at night, and his luxuriant hair is starting to come back! (Feel free to look up the definition of luxuriant.)
On Saturday, we tried out the route that was our go-to walk most Saturdays before Eric's diagnosis of cancer. We haven't done it since the beginning of June. It was a cold, drizzly, windy morning but we completed the almost four mile walk in an hour and fifteen minutes! That is only ten minutes more than our usual pace if we aren't in a hurry. Not bad for a guy whose hematocrit is only 26. Eric didn't even slow down on the hills. He is quite the guy and I am so proud of him!
From Eric re: typical day -- Eat, walk, shower, read, edit (draft historical materials), eat, clean and annotate (photos), read, eat, watch TV and read. In between, I occasionally visit with folks by phone or in person . I am not contagious so feel free to drop by (assuming you are not contagious). Thanks for all of the support.
Wednesday, November 13, 2013
"Two steps forward, one step back" is getting old
Eric had his weekly clinic appointment and lab draw yesterday. The great news is that his hematocrit went up .8, all the way to a still anemic 26.2! But up is up, and we are really happy because this is the first time since the stem cell transplant that Eric's hematocrit has gone up without a blood transfusion.
Eric's neutrophils and white blood cells are down, but not significantly. Eric's has a little swelling and stiffening in his ankles and his blood pressure is up a bit so the doctor ordered a diuretic yesterday. It is nice to add a cheap (it was free!) drug without any major side effects (just taking more bathroom breaks!) to the arsenal of expensive and complicated drugs he is now taking. I try not to read the multiple pages of side effects that come with each of Eric's drugs.
No complaints. Eric is doing great. We walk at least 50 minutes every morning. Eric is getting a lot of reading done and is enjoying listening to a variety of music. He is eating better, gaining some weight, improving muscle tone, and looking good!
Eric's neutrophils and white blood cells are down, but not significantly. Eric's has a little swelling and stiffening in his ankles and his blood pressure is up a bit so the doctor ordered a diuretic yesterday. It is nice to add a cheap (it was free!) drug without any major side effects (just taking more bathroom breaks!) to the arsenal of expensive and complicated drugs he is now taking. I try not to read the multiple pages of side effects that come with each of Eric's drugs.
No complaints. Eric is doing great. We walk at least 50 minutes every morning. Eric is getting a lot of reading done and is enjoying listening to a variety of music. He is eating better, gaining some weight, improving muscle tone, and looking good!
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