2001 Progress Prior to UAB 

 Link toSteven's Progress of Treatment for Leukemia at UAB

Monday, December 3, 2001

No Doctor Visit Yay!!!

 

 

 

 

Sunday, December 2, 2001

No Doctor Visit Yay!!!

 

 

 

 

Saturday, December 1, 2001

No Doctor Visit Yay!!!

 

 

 

 

Friday, November 30, 2001

No Doctor Visit Yay!!!  Janet, our patient coordinator, called and said Steven had passed all the tests so far.

 

 

 

 

Thursday, November 29, 2001

No Doctor Visit Yay!!!

UAB Called and the Donor was cleared and approved!  Also, the test results for Steven look good so far.  The Lumbar Puncture (Spinal Tap) showed no leukemia cells, EKG test passed, Pulmonary test passed; still a few more tests to find out about tomorrow.  The Bone Marrow Biopsy test must be performed next week since we ran out of time yesterday; it was a very long day.

 

 

 

 

Wednesday, November 28, 2001

Appointment at UAB with MD, Lab, Chest X-ray, EKG, MUGA, Breathing Test

Transcript from BMT Doctor Visit.

Dr. Lopez explained how difficult it is to choose the perfect chemo treatment. He explained about all the tests they would be doing to monitor his organ functions. He explained the transplant and why we were doing the transplant. He said that 90 % of people with PH+ ALL relapse within the first year without a transplant.   Dr. Lopez explained that Steven would be receiving someone else’s bone marrow - a full allogeneic transplant. He explained that once admitted to the BMT Unit they would have to kill off his immune system with chemo and possibly radiation. This will deplete all of his blood counts, so they will be giving him transfusions constantly.  He said after the BMT he will have fevers and his blood counts will continue to be low until the new marrow starts to produce new blood counts. They will be giving him antibiotics and other drugs to help his immune system to fight infection. We explained that Steven had an allergic reaction to one of the sulfa-based drugs, but they did help clear up the infection in his lung during the hospital stay, it was the oral form that he had the reaction to.

Complications.

He explained that there are several complications that may occur from toxicity. He said that the drugs they will be giving him would cause hair loss, nausea, organ problems, and infection. He said they would be giving Steven about 5 times more chemo than Dr. Barnes did. He said don’t be surprised if they tell us that his organs are taking some hits (Liver, Kidneys, Lungs, intestines, skin, and others.) This will be normal and they will treat each on a case-by-case basis. They expect this to happen. After the first two or three weeks after the BMT the white counts will be extremely low. They will do blood cultures, x-rays, and antibiotics to assist with these problems. The next types of problems will be long-term problems from the BMT graft. His body will know that the other persons BM doesn’t belong there and this will cause Steven’s body to fight it. He told us that they were able to match 10 out of 10 antigens instead of 6 out of 6 as we were told previously. Stevens’s body may attack his skin, liver, kidneys, intestines, and other organs. This is called graft versus host disease (Problem from BMT instead of the original Leukemia; graft vs. host.)  He said for Steven and us not to be discouraged by this, it is normal.  He said that this fighting is not all bad because the same cells that attack his organs will go after the bad Leukemia cells. This is called graft vs. leukemia. So they want a little of the graft vs. host disease. He said that people with graft vs. host disease have less of a chance for relapse. Graft vs. host disease is treated with immune suppressant drugs, to help increase his immune system. For the first couple of years Steven will be susceptible to infections so they will follow him closely. Next, long term, Dr. Lopez said that there are two forms of graft vs. host disease they are acute and chronic. Acute comes on real fast while chronic slowly affects his organs and body over a long period of timed. Lopez said that they could treat and control that as well. He said Steven might have long-term arthritis after the BMT.

He said that in a perfect world you come in, get the graft and go home with few complications, but this almost never happens. Steven has a very serious disease ALL Ph+ and may have life long side effects. Steven is young and should do well. They may be able to get rid of the problem of the ALL but may cause other problems. But with Steven’s condition we can’t afford not to have the BMT.   Steven will not be able to do some physical things for a couple of years after the BMT.   He said that everyone has complications.   He said Steven will feel very bad during this time and Steven needs to tell himself everyday why he is doing the BMT.   With out it he will not survive a year. With the BMT Steven’s chance of survival for 1 year is 80%, 5 years 40-50% and this depends on how things work out. Overall he said that one in four die within the first year of transplant -- Due to toxicity or infection etc.

This is a long process. He said he would be completely honest with us he will tell us exactly what is going on. He said he wanted us to be honest with him too about any problem Steven might have. There are 4 reasons why they may not be able to the BMT.1.If Steven does not want the BMT.    2. If the disease is back. The BMT is best if the disease is not present.  3.The donor is not available.  4.If they find something wrong with tests (lungs, heart, liver function, kidney function or some other problem.) He said Steven would belong to UAB for three or four months. He will be in the hospital for three weeks to a month minimum. Then he will be at Hope Lodge for several months after that. Only 1 in 4 patients find one donor but Steven had several, this is fortunate.

 

167,000

 

 

X

Tuesday, November 27, 2001

 

 

 

 

 

Monday, November 26, 2001

Scheduled blood work

Dr. Barnes told Steven to stop taking his Gleevec until UAB says to start taking it again.

131,000

 

X

 

Sunday, November 25, 2001

No Doctor Visit Yay!!!

 

 

 

 

Saturday, November 24, 2001

No Doctor Visit Yay!!!

 

 

 

 

Friday, November 23, 2001

No Doctor Visit Yay!!!

 

 

 

 

Thursday, November 22, 2001

No Doctor Visit Yay!!!

 

 

 

 

Wednesday, November 21, 2001

No Doctor Visit Yay!!!

 

 

 

 

Tuesday, November 20, 2001

No Doctor Visit Yay!!!

 

 

 

 

Monday, November 19, 2001

Scheduled blood work

Dr. Barnes was happy with Steven’s progress.   Dr. Barnes said to continue the Gleevec until UAB says to discontinue that treatment.   He asked if Steven had had a fever, cough or any other symptoms.   Dr. Barnes said Steven’s counts looked good and he felt the Gleevec was working well.   Dr. Barnes said he would help us in anyway possible, but UAB would be our primary care after Steven is admitted.   He recommended that Steven see Dr. Barnes on an as need basis and have his blood counts checked once each week.  

118,000

 

X

 

Sunday, November 18, 2001

No Doctor Visit Yay!!!

 

 

 

 

Saturday, November 17, 2001

No Doctor Visit Yay!!!

Steven was able to go see Troy State University play football today.  He was invited to sit in the Chancellor's box.  He also was able to visit with his fellow band members on the field after the game.

 

 

 

 

Friday, November 16, 2001

No Doctor Visit Yay!!!

 

 

 

 

Thursday, November 15, 2001

Scheduled blood work

112,000

 

X

 

Wednesday, November 14, 2001

Dentist Examination
Dental examination went well.

 

 

 

 

Tuesday, November 13, 2001

No Doctor Visit Yay!!!

 

 

 

 

Monday, November 12, 2001

Scheduled blood work

Some of Steven's blood counts have started to fall so, Dr. Barnes reduced his Gleevec to 300 mg each day.

114,000

 

X

 

Sunday, November 11, 2001

No Doctor Visit Yay!!!

 

 

 

 

Saturday, November 10, 2001

No Doctor Visit Yay!!!

 

 

 

 

Friday, November 9, 2001

No Doctor Visit Yay!!!

 

 

 

 

Thursday, November 8, 2001

Scheduled blood work

Most of Steven's blood counts are continuing to improve!  Thank God, what a great day!  Also, it's Steven's Grandpa's birthday!

146,000

 

X

 

Wednesday, November 7, 2001

No Doctor Visit Yay!!!

 

 

 

 

Tuesday, November 6, 2001

No Doctor Visit Yay!!!

We called UAB and they said that now we have to wait, the donor needs to give more blood, and have a complete physical.  Steven needs to see his dentist just to make sure he does not need any dental work and that he has no infection in his mouth.  The dentist needs to write a letter stating that Steven has had a dental check.

Our patient coordinator, Janet, said that the transplant will probably be scheduled in early December. Also, a backup match has been found.

 

 

 

 

Monday, November 5, 2001

Scheduled blood work and Doctor visit
Dr. Barnes was happy to hear that UAB called  with a perfect match.   He said that Steven’s counts were looking good, even though they had dropped some.   He is recommending that Steven start coming  to the MCC twice  each week for blood work.   He asked Steven how he was doing flushing the catheter himself.   Dr. Barnes recommended that we call UAB more often.   Dr. Barnes was happy with the progress of the Gleevec.  

114,000

 

X

 

Sunday, November 4, 2001

No Doctor Visit Yay!!!

 

 

 

 

Saturday, November 3, 2001

No Doctor Visit Yay!!!

 

 

 

 

Friday, November 2, 2001

No Doctor Visit Yay!!!

 

 

 

 

Thursday, November 1, 2001

No Doctor Visit Yay!!!

 

 

 

 

Wednesday, October 31, 2001

No Doctor Visit Yay!!!

 

 

 

 

Tuesday, October 30, 2001

No Doctor Visit Yay!!!

 

 

 

 

Monday, October 29, 2001

Scheduled blood work
Most of Steven's Blood work was in the normal range.

130,000

 

X

 

Sunday, October 28 2001

No Doctor Visit Yay!!!

 

 

 

 

Saturday, October 27, 2001

No Doctor Visit Yay!!!

 

 

 

 

Friday, October 26, 2001

No Doctor Visit Yay!!!

 

 

 

 

Thursday, October 25, 2001

No Doctor Visit Yay!!!
Nurse called with new prescription for prevention of infection.

 

 

 

 

Wednesday, October 24, 2001

No Doctor Visit Yay!!!

 

 

 

 

Tuesday, October 23, 2001

UAB called us today and said they have a perfect match for Steven's bone marrow.  They said they would continue to search for other matches.  They were going to contact Dr. Barnes to find out about Steve's progress.  This was an exciting call but, also scary.

 

 

 

 

Monday, October 22, 2001

Appointment with Dr. Barnes

Dr. Barnes said it was unfortunate that Steven was allergic to sulfa, because he needed to be on some type of preventative medication for prevention of pneumonia. Dr. Barnes said Steven’s white count has gone up and Dr. Barnes is going to start him back on Gleevec at 400 milligrams each day.  Dr. Barnes asked if we had heard anything from UAB.  Dr. Barnes told Steven to stop taking Benedryl and not to take Tylenol unless he needs it for pain or fever.  Dr. Barnes said to finish the steroids and may want to place him back on some type of prophylactic (Sulfa type) to prevent pneumonia.  Dr. Barnes said he would start checking Steven’s blood counts just once a  week, unless there is a change in health.  He has been talking to UAB and said they were working hard trying to find a perfect bone marrow match for Steven.

 

 

X

 

Sunday, October 21 2001

No Doctor Visit Yay!!!

 

 

 

 

Saturday, October 20, 2001

Steven looks much better today.  The rash is almost gone.

 

 

 

 

Friday, October 19, 2001

Follow-up for allergic reaction to Sulfa drug
Steven looked better today.  The doctor put him on a Steroid based medicine to help with the rash.  His temperature was normal today.

 

 

X

 

Thursday, October 18, 2001

Scheduled blood work
Steven had a low grade fever 100.7 today, he also had an allergic reaction from the Sulfa drug that he has been taking.  He had a rash from head to toe.  Luckily today was the last day of taking this medication.  So, we know now that he has allergic sensitivity toward Sulfa based drugs.  He was placed on Benedryl for the reaction.  

127,000

 

X

 

Wednesday, October 17, 2001

No Doctor Visit Yay!!!

 

 

 

 

Tuesday, October 16, 2001

No Doctor Visit Yay!!!

 

 

 

 

Monday, October 15, 2001

Scheduled blood work
No fever.

136,000

 

X

 

Sunday, October 14 2001

No Doctor Visit Yay!!!
No fever

 

 

 

 

Saturday, October 13, 2001

No Doctor Visit Yay!!!
Steven says he feels much better.  No fever.

 

 

 

 

Friday, October 12, 2001

No Doctor Visit Yay!!!
Steven better but he is still weak.  No fever.

 

 

 

 

Thursday, October 11, 2001

Steven is home from the hospital .  After a week of being in Jackson hospital with pneumonia, Steven was released and sent home today.  Dr. Barnes has stopped his Chemotherapy for a week or two, to allow Steven's immune system to regain some ground.  UAB has 10 possible preliminary bone marrow donor prospects that may match Steven.  They will re-test those that are available to narrow the search.  They told us a date is still a month or two away for the transplant.  Please keep us in your prayers.

 

X

 

 

Wednesday, October 10, 2001

I.V. antibiotics update soon

 

X

 

 

Tuesday, October 9, 2001

I.V. antibiotics   update soon

 

X

 

 

Monday, October 8, 2001

I.V. antibiotics

Dr. Barnes has reviewed the X-Rays and said the mass was still there.  Steven's fever is still high.  Dr. Barnes said he was going to request that both an infectious disease specialist and a Lung specialist look at Steven and recommend course of action.  Dr. Barnes also said being Steven's fever is still high he doesn't think the antibiotics are working.  He said he may request that either a bronchial oscopy or open lung surgery be performed if Steven's fever doesn't drop.  Dr. Barnes said he was going to switch Steven's from only antibiotics to antibiotics and a sulfa based drug.  

 

 

X

 

 

Sunday, October 7, 2001

I.V. antibiotics

Steven's fever is still high

 

X