On Monday we have to go to the VA again for more blood work and to talk to them about our next step. They said they got the HLA typing back from Nashville and the Nashville center thinks we need to begin treatment immediately here. Our Dr and the drs in the area that he confirred with believe that we should wait until we get to a transplant center. Part of that reason is because they still aren't sure which type of Leukemia he has a the transplant centers have speciality drs that specialize in the different types.
So on Tuesday we go to another VA (where our Drs collegues are that he confirred with) and have them have a look at James. They want to make sure that they don't think he should begin treatment here. We are hoping to know more soon!
We also have talked with a lady at our local health food store. We had started to get some organic foods as they are supposed to be better. While there she told us about the Halleluiah diet. It's supposed to be able to help combat cancers! We are planning on starting it soon, unless they begin treatment soon as we won't have time for the foods to kick in.
Thanks again for all the prayers and thoughts! It means the world to us!
Saturday, November 29, 2008
Tuesday, November 25, 2008
Update
Not much new. On Monday we went in for the HLA typing. They still aren't sure where we will be going. They are still working at getting us to the Fred Hutchinson in Seattle, WA. We have started the process for the claim of the Leukemia being from Iraq. The social worker and the VFW rep are in communication. Otherwise we still wait!
Friday, November 21, 2008
We've Started!
Well, we've started this journey now. Let's start with a little history!
James came home from deployment from Kosovo this past July. In August, he went to the VA (Veteran's Hospital) to start all the post deployment things and to get in their system. He needed to put in some claims on some things that have occurred in his 36 years of service so far. James was in Iraq as part of Operation Iraqi Freedom from 2003-2004 too. When he came back then he had wonky blood work. They sent him to his civilian dr for follow-up testing, and then onto a blood specialist. According to James they just monitored his blood and did no further testing and sent him loose. I haven't heard what those numbers were yet.
On October 10th he went to the VA for 2 appointments, the first was for routine blood work to check his sugars, cholestoral, etc. The next was 2 hours later.
So he gave his blood, came home for some food, and went back for the next appt. When he got back there, they called him back to the lab. He went back and they said something was messed up and needed more blood, so he gave more.
Then October 15th he was told to come back and give blood again. He went and then the next day we were told his blood levels were critically low and that he needed to get up there ASAP and might be hospitalized. He scheduled an appt for that Friday, the 17th, with the hematology dept. He had to leave later the 17th so hospitalization wasn't so thrilling!
On the 17th we met with Dr. Stone. He said that his levels were low, but not overally critical. He thought that James either had a parasite or Leukemia, but didn't think it was acute. WTH! So he scheduled a bone marrow biopsy for October 24th. He also did another CBC count.
We went on the 24th to get the biopsy done. They had to go in twice to get the piece of bone marrow since they didn't get it the first time they drilled! They said it would be 2-3 weeks to get all the results, since they were doing genetic testing too on it.
On November 14th we went in to get the results, expecting Chronic Lymphocytic Leukemia if it was Cancer, but hoping for just a parasite or something easily treated.... We get in and see the dr and he says....
It's Leukemia. He said that James actually has a rare form and they can't be for certain yet if it's Acute Lymphocytic Leukemia or Bi-Liniagal Acute Myelogenous Leukemia. The dr said that we needed to move forth with testing and get into a Transplant Center as James will need a bone marrow transplant within the next year. He gave us a list of 6 places to check out and decide where we want to go. We had to decide by Monday where we wanted to go. I was crushed!
On Monday we decided to go forward and chose the Fred Hutchinson Center in Seattle, Washington. The nurse said that they now don't know if he will be able to go there, but she will try hard. I will push further too!
On Wednesday, November 19th we went back to the VA. We originally knew of 2 tests, but turned into a day of testing! Here was the schedule that happened:
James came home from deployment from Kosovo this past July. In August, he went to the VA (Veteran's Hospital) to start all the post deployment things and to get in their system. He needed to put in some claims on some things that have occurred in his 36 years of service so far. James was in Iraq as part of Operation Iraqi Freedom from 2003-2004 too. When he came back then he had wonky blood work. They sent him to his civilian dr for follow-up testing, and then onto a blood specialist. According to James they just monitored his blood and did no further testing and sent him loose. I haven't heard what those numbers were yet.
On October 10th he went to the VA for 2 appointments, the first was for routine blood work to check his sugars, cholestoral, etc. The next was 2 hours later.
So he gave his blood, came home for some food, and went back for the next appt. When he got back there, they called him back to the lab. He went back and they said something was messed up and needed more blood, so he gave more.
Then October 15th he was told to come back and give blood again. He went and then the next day we were told his blood levels were critically low and that he needed to get up there ASAP and might be hospitalized. He scheduled an appt for that Friday, the 17th, with the hematology dept. He had to leave later the 17th so hospitalization wasn't so thrilling!
On the 17th we met with Dr. Stone. He said that his levels were low, but not overally critical. He thought that James either had a parasite or Leukemia, but didn't think it was acute. WTH! So he scheduled a bone marrow biopsy for October 24th. He also did another CBC count.
We went on the 24th to get the biopsy done. They had to go in twice to get the piece of bone marrow since they didn't get it the first time they drilled! They said it would be 2-3 weeks to get all the results, since they were doing genetic testing too on it.
On November 14th we went in to get the results, expecting Chronic Lymphocytic Leukemia if it was Cancer, but hoping for just a parasite or something easily treated.... We get in and see the dr and he says....
It's Leukemia. He said that James actually has a rare form and they can't be for certain yet if it's Acute Lymphocytic Leukemia or Bi-Liniagal Acute Myelogenous Leukemia. The dr said that we needed to move forth with testing and get into a Transplant Center as James will need a bone marrow transplant within the next year. He gave us a list of 6 places to check out and decide where we want to go. We had to decide by Monday where we wanted to go. I was crushed!
On Monday we decided to go forward and chose the Fred Hutchinson Center in Seattle, Washington. The nurse said that they now don't know if he will be able to go there, but she will try hard. I will push further too!
On Wednesday, November 19th we went back to the VA. We originally knew of 2 tests, but turned into a day of testing! Here was the schedule that happened:
- 8am Pulmonary Function Test
- 8:40 go to Nuclear Medicine- Get injected for Bone Density Test
- 9ish got to Oncology and talked to social Worker
- 10:45 Radiology for Chest X-Ray
- 11:15 EKG and Echocardiogram
- 12 Nuclear Medicine for Bone Density Test
- 12:30/40ish Radiology for CT Scan and nasty drink
- 1:15 got to Lab so they drew 14 tubes of blood and urine test
- 2:15 finally get to eat (couldn't eat after midnight because of CT SCan)
- 3:30 got to Dental for exam
- 3:55 back to oncology for news on other appts.
So that was our busy day! Today we found out that on Monday he goes in for DNA testing/HLA typing. That way we will know who will be able to be a match for his Bone Marrow Transplant. I think that is all we know at this time.. except that they believe James' Leukemia is from his service in Iraq. If you or anyone you know has served there, get your blood work checked! It's a simple test that can change your life! Thank you for all your support! It means a lot to all of us!!!
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