Tom's appointment yielded the expected scheduling of another bone marrow extraction (AKA biopsy). That procedure will take place Friday afternoon, which was as soon as we could get. I offered to help the doctor do it on Thursday, since his nurses will be out. I even offered up nurses that I know. But, none of that worked. We will get the results on Monday or Tuesday.
At this point the doctor is concerned about his total blood count. Though all of his blood elements (white, red, platelet) have been low for some time the platelets had been the only count at critical levels. A week ago was the first time the red blood cells had dropped to critical and his white blood cells seem to be following suit. The doctor also noted that Tom does not fit neatly into any diagnostic category. We're even further from understanding how his liver had factored into this. The ibuprofen theory becomes more and more unlikely all the time. I'm guessing it's one small nudge away from being completely out.
He did discuss with us the potential nature of the condition as something that may not have "declared" itself by the time that the first bone marrow biopsy was performed. He said that sometimes it takes time for all of the symptoms of an existing disease to present. The doctor also mentioned that he gets, at the most, 1 to 2 cases per year that are this difficult to figure out.
He also gave us two scenarios that he has considered. The worst case scenario would be leukemia (http://en.wikipedia.org/wiki/Leukemia). Based on what has occurred so far it seems as though Tom would fall in the myelogenous category. The other scenario that he mentioned was aplastic anemia (http://en.wikipedia.org/wiki/Aplastic_anemia) . . . ever heard of the "Boy in the Plastic Bubble?" Luckily treatment options have improved significantly since John Travolta was a teenager.
Once we get the results from this biopsy and a diagnosis & recommended course of treatment from Dr. Olsen we'll seek out second and third opinions, if for no other reason than to be thorough.
So, I don't know that I'll have much more information for about a week, but if I do I'll let everyone know.
The prayers and thoughts are so meaningful. Thank you. Tom doesn't ask for much, only prayer: something both powerful AND convenient to give.
With much love,
The Highland Park DuBranskys
Tuesday, December 30, 2008
Monday, December 29, 2008
December 29, 2008
Tom is currently having another transfusion (red blood and platelets). His hemoglobin (assumed to be 7.6 when he left the hospital on Thursday, though post-transfusion blood counts aren't taken because they are considered fairly innacurate) was 7.6. Today it was 7.3. That means that in four days he made few red blood. His platelets were at 15. This is fairly typical for this point in the week.
Today we saw Dr. Mena, who performed Tom's bone marrow extraction in October and is in the same medical group with Dr. Olsen. His blood was drawn and analyzed at the office. Dr. Mena needed to order the transfusions so Tom was not able to see Dr. Olsen when the doctor arrived in the afternoon.
A new bone marrow extraction is expected to be ordered tomorrow. A bone marrow transplant will also be discussed (http://en.wikipedia.org/wiki/Bone_marrow_transplant), likely once the results of the extraction are in.
Tom's thin right now, just about 140 lbs. He did shave this weekend and we were all happy to see his face again. His cold is improving, only a hacking cough remains. He began to feel weak again today. The transfusion should assist with this.
Tom will complete the antibiotic prescribed to him by Dr. Ski at Marion Hospital (in Santa Maria) tomorrow. However, he is not likely to need to continue the strict neutropenic (low-bacteria-risk) diet (http://www.upmc.com/HealthAtoZ/patienteducation/Documents/NeutropenicDiet.pdf) that was prescribed at Marion, as an auto-immune disorder has not been identified.
We will see his doctor tomorrow at 11:30 AM. Thank you all for your calls, texts, emails, etc. We really appreciate every one.
Today we saw Dr. Mena, who performed Tom's bone marrow extraction in October and is in the same medical group with Dr. Olsen. His blood was drawn and analyzed at the office. Dr. Mena needed to order the transfusions so Tom was not able to see Dr. Olsen when the doctor arrived in the afternoon.
A new bone marrow extraction is expected to be ordered tomorrow. A bone marrow transplant will also be discussed (http://en.wikipedia.org/wiki/Bone_marrow_transplant), likely once the results of the extraction are in.
Tom's thin right now, just about 140 lbs. He did shave this weekend and we were all happy to see his face again. His cold is improving, only a hacking cough remains. He began to feel weak again today. The transfusion should assist with this.
Tom will complete the antibiotic prescribed to him by Dr. Ski at Marion Hospital (in Santa Maria) tomorrow. However, he is not likely to need to continue the strict neutropenic (low-bacteria-risk) diet (http://www.upmc.com/HealthAtoZ/patienteducation/Documents/NeutropenicDiet.pdf) that was prescribed at Marion, as an auto-immune disorder has not been identified.
We will see his doctor tomorrow at 11:30 AM. Thank you all for your calls, texts, emails, etc. We really appreciate every one.
Saturday, December 27, 2008
December 23rd - December 27th
Hello All,
Thanks for checking in on Tom. As I write, Tom is resting and remaining as quarantined as we have the capability to keep him. When we left Los Angeles for Santa Maria on the 23rd we expected to hear from Tom's hemotologist, Dr. Olsen, on the 24th to find out if we needed to come home for a blood platelet transfusion on Friday. At the time Tom was several weeks into a bad cold and in the last4 or 5 days had been experiencing a racing heartbeat and throbbing in the back of his head whenever he stood up. On the 22nd and 23rd these symptoms had subsided and were replaced with extreme weakness.
Early on the 24th Dr. Olsen's doctor called and said that his blood test results indicated that his hemoglobin was 5.8. Normal is 13.5 to 16.5 (http://en.wikipedia.org/wiki/Hemoglobin). The doctor ordered additional blood tests as he didn't believe Tom could survive such a low hemoglobin. Marc took him to several lab locations until they drew again around 1:00. By 2:30 Dr. Olsen's called and told me that Tom needed to go straight to the emergency room. I inquired about whether I could get him back to the hospital in Burbank where Tom usually gets his blood platelet transfusions and which Tom trusts. Dr. Olsen's office reiterated that he didn't have time and that this is was a life-threatening situation. He was to tell them that he was under the care of a hemotologist/oncologist, that his hemoglobin was now 5.6, and that he would need a full blood transfusion.
This was the first time that his hemoglobin had ever been critically low. We were confused and panicked. Tom was at the hospital before 3:00 and was immediately put in a bed and testing began. He was admitted by 6:00. The ER doctor also explained to us that the subsiding of the throbbing and heart racing was a poor sign, as it meant his heart, which was working harder to circulate what little blood he had, was no longer compensating for the lack of blood in his body. His transfusion took all that night and into Christmas morning. They followed up the red blood transfusion with his "regular" platelet transfusion. At some point in his hospital stay the nurses began to wear face masks and explained that Tom's immune system is compromised and that he should be exposed to as few people as possible. He was discharged at about 1:30 PM Christmas Day.
I brought him back to Lisa and Jason's house and he slept/rested for about a day before we came home Friday in the late afternoon. Friday morning we spoke with the on-call at his medical group. He directed Tom to return to the hospital if the symptoms worsened again and to be at the doctor's office first thing Monday morning. Based on a recent conversation with Dr. Olsen we know that Tom will, at least, be undergoing another bone marrow extraction. The waiting until Monday morning is hard right now. We'll let you know what we find out.
Thanks, as always, for your prayers and thoughts!
Thanks for checking in on Tom. As I write, Tom is resting and remaining as quarantined as we have the capability to keep him. When we left Los Angeles for Santa Maria on the 23rd we expected to hear from Tom's hemotologist, Dr. Olsen, on the 24th to find out if we needed to come home for a blood platelet transfusion on Friday. At the time Tom was several weeks into a bad cold and in the last4 or 5 days had been experiencing a racing heartbeat and throbbing in the back of his head whenever he stood up. On the 22nd and 23rd these symptoms had subsided and were replaced with extreme weakness.
Early on the 24th Dr. Olsen's doctor called and said that his blood test results indicated that his hemoglobin was 5.8. Normal is 13.5 to 16.5 (http://en.wikipedia.org/wiki/Hemoglobin). The doctor ordered additional blood tests as he didn't believe Tom could survive such a low hemoglobin. Marc took him to several lab locations until they drew again around 1:00. By 2:30 Dr. Olsen's called and told me that Tom needed to go straight to the emergency room. I inquired about whether I could get him back to the hospital in Burbank where Tom usually gets his blood platelet transfusions and which Tom trusts. Dr. Olsen's office reiterated that he didn't have time and that this is was a life-threatening situation. He was to tell them that he was under the care of a hemotologist/oncologist, that his hemoglobin was now 5.6, and that he would need a full blood transfusion.
This was the first time that his hemoglobin had ever been critically low. We were confused and panicked. Tom was at the hospital before 3:00 and was immediately put in a bed and testing began. He was admitted by 6:00. The ER doctor also explained to us that the subsiding of the throbbing and heart racing was a poor sign, as it meant his heart, which was working harder to circulate what little blood he had, was no longer compensating for the lack of blood in his body. His transfusion took all that night and into Christmas morning. They followed up the red blood transfusion with his "regular" platelet transfusion. At some point in his hospital stay the nurses began to wear face masks and explained that Tom's immune system is compromised and that he should be exposed to as few people as possible. He was discharged at about 1:30 PM Christmas Day.
I brought him back to Lisa and Jason's house and he slept/rested for about a day before we came home Friday in the late afternoon. Friday morning we spoke with the on-call at his medical group. He directed Tom to return to the hospital if the symptoms worsened again and to be at the doctor's office first thing Monday morning. Based on a recent conversation with Dr. Olsen we know that Tom will, at least, be undergoing another bone marrow extraction. The waiting until Monday morning is hard right now. We'll let you know what we find out.
Thanks, as always, for your prayers and thoughts!
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