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

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

Saturday, October 6, 2001

I.V. antibiotics

Steven had another X-Ray this morning.
Steven's fever is still high 101 - 103.9

X

Friday, October 5, 2001

Steven has been admitted to Jackson Hospital

Steven is still running a high fever.  Dr. Barnes ordered a X-Ray.  The X-Ray showed a mass in Steven's right lung.  Dr. Barnes as requested high doses of antibiotics for Steven.

X

Thursday, October 4, 2001

I.V. antibiotics
Steven is continuing to have high fevers.   Dr Barnes is thinking about removing the Hickman Catheter because they think this may be what is causing Steven's fever.  Removal of the Hickman Catheter may be done tomorrow as outpatient at Jackson Hospital.

104,000

X

Wednesday, October 3, 2001

I.V. antibiotics and blood transfusion.
Steven and Ann left before daylight for Jackson Hospital.  Steven  received two units of blood this morning and afternoon in addition to two different antibiotics (I.V. with each taking one hour).  

This turned out to be a very long, stressful day, arriving at 6:45 a.m. and leaving at 4:15 p.m.   Steven had a temperature all day, up to 103, and we were worried that he would have to be admitted to the hospital overnight.  Tonight his temperature is finally coming down, 99.1 now.

X

Tuesday, October 2, 2001

I.V. antibiotics
Steven's blood counts have fallen dramatically.    Dr. Barnes has decided to stop the Gleevec for a few days to allow Steven's blood counts to stabilize.  He had to have his blood typed at Jackson  hospital for a transfusion tomorrow.  Steven still has a fever so he will continue to receive antibiotics.  His white blood count is 0.9. (normal is 4.0-10.0)

71,300

X

X

Monday, October 1, 2001

Clinic appointment for blood work.

Steven had a temperature of 101.4 so he needs to start an antibiotic i.v. regimen for a week; we'll come to the cancer center every day for that (it takes 2 hours).  Dr. Barnes said Steven will also need to go to Jackson hospital again later this week for more blood and he is reducing the dosage of Gleevec from 600 milligrams (6 pills) to 400 milligrams (4 pills) per day.  Dr. Barnes said that he is pleased that the Gleevec is working.

63,000

X

Sunday, September 30, 2001

No Doctor Visit Yay!!!

Saturday, September 29, 2001

No Doctor Visit Yay!!!

Friday, September 28, 2001

Clinic appointment for blood work.

Steven's red blood counts were low so, we had to take him to Jackson hospital for two units of blood.  Steven was at Jackson from 3:00pm until 9:00pm This made it a very long day. 

53,000

X

X

Thursday, September 27, 2001

No Doctor Visit Yay!!!

Wednesday, September 26 2001

Appointment with Dr. Barnes

Dr. Barnes asked if Steven was handling the Gleevec ok; and Steven is, so far. Dr. Barnes said that Steven was in partial remission. UAB faxed a copy of the preliminary results of the bone marrow transplant donor search to Dr. Barnes. He was not accustomed to reading a report in this format (the computer report instead of the translated i.e. 6 out of 6.) He said, Steven may feel bad while coming off of the Steroids. This is why Dr. Barnes tapered the doses last week. The bone scan was normal. Dr. Barnes wants to continue to monitor Steven’s blood  counts three time each week as long as Steven’s counts stay satisfactory.

50,700

X

Tuesday, September 25, 2001

Follow-up appointment with Dr. Wells, orthopedic specialist, in Montgomery to discuss bone scan on Steven's  arm and leg performed last Friday at the MCC.  Dr. Wells reviewed the bone scan, the ultra sound, and the MRI and said they were all normal.  He thinks the pain is a result of the chemo, also the bone marrow biopsy was performed on Steven's right hip and could be causing latent pain down that leg.  Steven wakes up with cramps in both of his leg calf muscles.  It's probably side effects of the chemo and possibly the leukemia, which has caused him to bruise very easily.  Fortunately his right arm feels much better.

X

Monday, September 24, 2001

Dr. Barnes warned us that Steven may need a transfusion soon and today is the day.  The CBC (blood work results) showed that his red blood count and platelets are low.  The good news is that his white blood cell count (bad, leukemia cells) are lower, they were 22.8 on Friday and are now at 5.7, the normal range is 4.0-10.0.  The Gleevec is working!  Still, we had to go to Jackson hospital for 2 units of blood (got there before 3 pm and didn't get out until 8:20!)

59,000

X

X

Sunday, September 23, 2001

Yay!!!  No Visit to hospital or clinic.  Steven feels fairly well today.  Great Day!

Saturday, September 22, 2001

Yay!!!  No Visit to hospital or clinic.  Steven feels fairly well today.   He was able to go to the Troy State University Football Game tonight. (They won!  Go Trojans) .  Steven  had a seat in the press box and he was able to spend some time with his band members after the game at the post game show !  This was really a GREAT DAY!!  It made Steven so happy.

Friday, September 21, 2001

Steven finally started his Gleevec today!  He has to take 6 pills of Gleevec each day.

We called UAB to ask how the bone marrow search was going and if it had started.  They said that they haven't gotten the DNA typing done yet and that the terrorist attacks earlier this month are holding up the DNA typing all over the country.  This terrible event is still effecting us in unbelievable ways!  

80,000

X

Thursday, September 20, 2001

No visit today, just trying to figure out why the insurance won't approve  the Gleevec.  It's $3,500 a month.  Investigating the situation so we can roll with this new drug! Lots of phone calls to make it happen.

Wednesday, September 19, 2001

MCC visit.

71,000

X

Tuesday, September 18, 2001

Scheduled Dr. appointment with Dr. Barnes.  
Possibly Start Gleevec.

Dr. Barnes looked at Steven’s leg and arm checking for bruising or abnormalities.  Steven is having pain in both his arm and leg.   Dr Barnes ordered a bone scan and an ultrasound of Steven’s leg.   Dr. Barnes said that they would order Gleevec and it would be Friday before it will arrive, if approved by the insurance company.   He said a month’s prescription would cost over $3,000.   He said the blood counts would start to bottom out once he starts taking Gleevec.   Steven may have to have a blood transfusion after a few days of taking Gleevec.   Dr. Barnes recommended that we call every week and ask UAB how the search is going. Dr. Barnes asked if Steven was eating well. “He eats like a horse."   So that's good.   He told Steven to take his Prednizone 50mg (2 for 2 days, 1 for 2 days, .5 for 2 days) and then stop taking Prednizone.   Dr. Barnes discussed his blood counts with us.  

Steven will take 6 pills of Gleevec each day.   He will start going Mon, Wed, and Fridays unless his blood counts fall off too far and fast.  

Dr. Barnes explained the process of MRI’s and Bone scan. Steven explained that he was having trouble sleeping and still having pain in the arm and leg, Dr. Barnes prescribed Tylox for Steven’s pain.

Monday, September 17, 2001

6:30 AM MRI

X

Sunday, September 16, 2001

Yay!!  No Visit to hospital or clinic.  Steven feels fairly well today.  Great Day

Saturday, September 15, 2001

Yea!!! No Visit to hospital or clinic.  Steven feels fairly well today.  Great Day

Friday, September 14, 2001

Steven had Chemotherapy, a shot  Asparaginase (in Hip),  Last dose of   Asparaginase .  No required medical visit for weekend (as long as Steven has no fever and feels ok).

84,000

X

Thursday, September 13, 2001

Appointment Dr. Barnes, MCC

WITH ALL OF YOUR PRAYERS WE ARE GOING TO BEAT THIS DISEASE

Notes From MCC

Wednesday, September 13, 2001

Dr. Barnes

We gave Dr. Barnes a copy of the memo from Steven’s visit to UAB. Dr. Barnes said Steven had two more days of the current chemo treatment (today and Friday). Dr. Barnes also checked Steven’s right shoulder, elbow and arm. Steven has been having extreme pain in these areas. Dr. Barnes prescribed Loratabs for Steven’s pain. Dr. Barnes said the pain is more than likely from the chemo treatments. But, could be from localized deposits of Leukemia in Steven’s elbow. Dr. Barnes reviewed the X-rays from Wednesday and said that he did not see any deposits but is sending the x-rays to a radiologist for review. Dr. Barnes has also asked for a MRI to be performed on Steven’s elbow. To ensure that there is not something else going on with Steven’s arm. The MRI is scheduled at 6:30 AM Monday morning, September 17, 2001.

During the scheduling of the MRI, Jackson Hospital informed us that their MRI equipment has been broken this week and the part is being held up because the plane cannot take off.

DAMN TERRORISTS!!!

Dr. Barnes was surprised that we were assigned Dr. Garcia instead of Dr. Vaughn. (And so were we!) Dr. Barnes is concerned that Steven is not progressing quickly enough to be ready when the time comes for the BMT. He has recommended that Steven start a regimen of Gleevac ? given by mouth. This contradicted what was said at UAB so we expressed our concerns to Dr. Barnes and he called Dr. Garcia and discussed the situation. Dr. Garcia agreed with Dr. Barnes so Steven will have Saturday, Sunday, and Monday off of Chemo so his body can flush some of the Chemo out before Gleevac starts on Tuesday, September 18, 2001. Gleevac will be given for 1 to 2 weeks. Dr. Barnes said that Steven should continue to take the steroids until current refill runs out and to hold off on purchasing additional refills until further notice.

Steven had Chemotherapy, a shot Epoetin (Procrit ) and Asparaginase (in Hip) 

60,400

X

Wednesday, September 12, 2001

UAB Appointment Scheduled with UAB's Bone Marrow Team.  Dr. Vaughn at the Kirklin Clinic at 9:30AM.  We got out of bed around 4:30AM to prepare for our three hour drive to UAB.  None of us could sleep last night.

WITH ALL OF YOUR PRAYERS WE ARE GOING TO BEAT THIS DISEASE

Notes From UAB

Wednesday, September 9, 2001

Meeting with Dr. Garcia

Bone Marrow Transplant (BMT) should take place within the next 4 to 6 weeks after continuing to follow the standard Chemotherapy treatments. Both UAB and Montgomery Cancer Center (MCC) will monitor this. They hope to have Steven as close to remission as possible, if not in full remission.

Here it goes. Steven has ALL with Philadelphia Chromosome and an abnormal Chromosome 19. They are both extremely bad when accompanied by Leukemia. He will relapse after chemotherapy-induced remission without a transplant. Steven doesn’t have a sibling or a child so there are no possibilities for a perfect bone marrow match within the family. Stevens’s biological parents will not be considered during the first rounds of search because they are from families from different parts of the globe. The doctors are looking at basically six antigens in Steven’s bone marrow for the search. UAB drew blood today from Steven and they will type it within the next 24 hours. Tomorrow, Thursday, September 13, 2001 the BMT team (all four BMT doctors) will meet to review the results and Steven will be entered into the national BMT database by Friday, September 14. They should receive 10 or more matches within three days. These will be reviewed by the UAB BMT team and ranked 1, 2, 3, and so on, according to the six antigens. They will eliminate any matches who are not available because of positive CMV, other diseases, who have been sick, who decline to donate and many other reasons.

CMV or cytomegalo virus is a common cause of infection in BMT patients. Patients who have been previously exposed to the CMV virus are twice as likely to develop a CMV infection post-transplant than those who have not. Patients undergoing an allogeneic BMT are more likely to develop a CMV infection than autologous BMT patients, particularly if they receive bone marrow from a mismatched donor.

A CMV infection can develop in several different organs including the liver, colon, eyes and lungs. CMV in the lungs is particularly worrisome, since CMV pneumonia is very difficult to treat and usually fatal. Two to 4 percent of autologous BMT patients and 10 to 20 percent of allogeneic BMT patients develop CMV pneumonia. The incidence of CMV infections is less in children than in adults.

 Before the actual date of the BMT,  Steven will be given high doses of Chemotherapy (Chemo) to kill his immune system completely. This is so his body does not reject the foreign bone marrow. There is a possibility that even the smallest of infections can have severe consequences. These infections can come from the skin, kidney, liver, lungs, gut, and so on.

The following is an estimate of time line. (Remember any stage can be longer or shorter.)

1. Steven will submit blood sample to be typed for match. Done on September 12, 2001.

2. Steven will continue with standard chemo regimen. To bring Steven’s leukemia to remission or as close to remission as medically possible. 4 to 6 weeks or sooner.

3. Type Stevens’s blood and look at the six or so antigens. Done on September 12, 2001, and will be repeated on September 13, 2001. The BMT Team will meet on September 13, 2001 to review the results.

4. Steven will be entered into the national BMT this week.

5. UAB will be sent a list within 3 days of the possible matches. They will screen them further as mentioned above.

6. UAB will rank the best matches and do final screens (notifying possible donors for their availability).

7. Steven will be given an appointment (After remission if possible) 3 days before procedure to have stress test performed on heart, liver, lungs, and overall being. If he has a problem they will introduce antibiotics or meds to try to correct the problem.

8. When he passes tests and UAB feels it is as safe to go ahead with transplant, Steven will be given a type of chemo to kill off his immune system. This is so his body does not attack the new bone marrow.

9. At this time they will place us on a waiting list for the Hope Lodge in Birmingham.

10. The day before BMT they will start him on hydration therapy. This will help Steven through the surgery. Steven will receive many units of blood. PLEASE DONATE TO YOUR RED CROSS!!

11. After the surgery Steven will be in a completely isolated room. Limited visitors will have to pass through a decontamination area before entering his room for very short visits. (Immediate Family only)

12. Steven will be in this area (depending on recovery) from 14 to 100 days.

13. After Steven regains strength and partial immune system, Steven will be moved to an isolation unit that will allow for more visits (still minimal).

14. Once Steven has good cell counts, no fever, good urine, and is walking on his own he will be released to the Hope Lodge or a townhouse located very close to UAB.

15. Steven must have a caregiver 24 hours a day and seven days a week. UAB will not permit a BMT unless there is a caregiver guaranteed for the duration of Steven’s stay at Hope Lodge. (6 weeks to 4 years)

16. Steven will visit UAB every day during this time for full checkups. Appointments may become every other day if progress is going well. (“We will have to take it one day at a time”).

17. Steven will be re-admitted for even the smallest of reasons. (Sniffle, cough, bruise, rash, or anything)

18. After BMT, for any medical reason, we will contact the BMT Team at UAB only. A 24 hour a day hotline will be given to us.

19. Dr. Garcia said none of this is written into stone.

Steven had Chemotherapy, a shot of Asparaginase (in Hip)

X

X

Tuesday, September 11, 2001

Steven had Chemotherapy, a shot of Asparaginase (in Hip),   This was not a good day emotionally.  We were required to wait around while the cancer center gathered all of the information we needed to take to UAB tomorrow.  It took two hours to get the x-rays from the hospital.   

72,000

X

Monday, September 10, 2001

Steven had Chemotherapy, a shot of Asparaginase (in Hip)

66,000

X

Sunday, September 9, 2001

Steven had Chemotherapy, a shot of Asparaginase (in Hip)

X

Saturday, September 8, 2001

Steven had Chemotherapy, a shot of Asparaginase (in Hip)

X

Friday, September 7, 2001

Steven had Chemotherapy, a shot of Asparaginase (in Hip)

81,600

X

Thursday, September 6, 2001

Steven had Chemotherapy, a shot Epoetin (Procrit ), Asparaginase (in Hip), and Antibiotics. 

X

Wednesday, September 5, 2001

Scheduled appointment Dr. Barnes, MCC
Steven has been handling the Chemo well so far.  White counts are up, still has some pain in extremities and numbness in his finger tips. He will continue with Asparaginase   and will receive doses of Vincristine on Thursday.  He said he didn't feel Steven's Leukemia was going into remission yet. Dr. Barnes wants to see what UAB's plan is for remission next week before changing treatment plan. He would like to see Steven in remission before a transplant if possible. Steven has made some progress, white counts are down and  reds are stable, fever has broken. Dr. Barnes is scheduling to see Steven next Thursday morning. Antibiotic will continue until Friday. Dr. Barnes said we need a copy of all of Steven's records to take to UAB and that Steven should continue wearing his hospital mask while outside the home, and  he should avoid  going outside during the heat of the day. Steven should rest as much as possible. 

68,100

X

Tuesday, September 4, 2001

Steven had Chemotherapy, a shot Asparaginase (in Hip), and Antibiotics. 

X

Monday, September 3, 2001

Steven had Chemotherapy, a shot Asparaginase (in Hip), and Antibiotics. 

62,200

X

Sunday, September 2, 2001

Steven Received antibiotics and steroids today.

X

Saturday, September 1, 2001

Steven Received antibiotics and steroids today.

X

Friday, August 31, 2001

Steven's Temperature was normal today.  He received antibiotics, steroid, and Daunorubicin .

X

Thursday, August 30, 2001

Steven Received Epoetin (Procrit) , Vincristine , and Daunorubicin   Steven had a fever of 100, his Mature white blood cells 2%, they were 1% before.  Steven has to have antibiotics for 6 days because of fever.

43,000

X

Wednesday, August 29, 2001

Dr. Barnes said he still has Leukemia cells in his blood.  But, all in all his blood counts looked good.  Platelets were 23,000.   Steven will receive two more doses of  Vincristine   He will continue Vincristine for a couple more weeks. He will start the  Asparaginase   on Monday 3rd of September.  he will receive Asparaginase for 11 to 14 days.  Steven is having some cramps in his legs and arms. also, some numbness in his hands too.  Dr. Barnes said this is from the Prednisone (Steroid).  We have an appointment with Dr. Vaughn at Kirklin Clinic (Bone Marrow clinic) on Wednesday, September 12, 2001.  Both parents will have their blood tested (HLA typing). Also UAB will start a search in the national data bank of bone marrow donors looking for a match.   

23,000

X

Tuesday, August 28, 2001

No Dr. Visit !!!!!!!!YAY!!!!!!

Monday, August 27, 2001

Dr. Barnes is back with news of the chromosome test today.  The news was not very good.  Steven has the Philadelphia Chromosome,  This means that he will have to have the bone marrow transplant.  His platelets were 22,000.

22,000

X

Sunday, August 26, 2001

Platelets dropped to 12,000 today, dropped 8,000 since yesterday.  Test performed by Edge Regional Medical Center, Troy AL.  We had to take Steven back to Jackson Hospital in Montgomery, AL to receive platelets.

12,000

X

X

Saturday, August 25, 2001

Blood Checked at Edge Regional Medical Center, Troy AL, 23,000 then back home.

20,000

Friday, August 24, 2001

(9:40AM Appointment) MCC to check blood.  Steven had to have platelets given to him at Jackson Hospital today.  This took 3 hrs.  Steven arrived at home at 4PM.  He will go to the Lab at Edge Regional Medical Center, Troy AL, to have platelets checked on Saturday and Sunday.

before blood 20,000
after blood 23,000

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Thursday, August 23, 2001

Steven got  Vincristine today.  He also had a patient information session with Lisa, (nurse) and meets nurse practitioner Terry Rushton.  Another appointment here tomorrow morning on the 24th. Then we hope to go home for the weekend

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Wednesday, August 22, 2001

Steven was released this morning after getting a shot of Epoetin in his leg to help his body produce more red blood cells, we get out of the hospital and have to rent a hotel room at Studio Plus a couple of blocks from the MCC. This way we will be close to the Cancer center for the Thursday appointment.

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Tuesday, August 21, 2001

Dr. Moraes made his rounds after 4:00 PM.  He said Steven should be released this afternoon or on Wednesday morning.  He refused to answer my questions and was very rude when I asked if there was anyway for us to speak with Dr. Barnes.  Saying "he is not my step-father, I don't need his permission to release a patient!!"  Dr. Moraes did not give us a treatment plan for the remainder of the week. only that we had a Montgomery Cancer Clinic appointment on Thursday 23rd.  He had no comment of the Chromosome test results from the bone marrow biopsy.  We are angered and insulted by this doctor. 

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Monday, August 20, 2001

Dr. Moraes made rounds in late afternoon.  He said he was stopping Steven's antibiotics today and since there has not been any fever for 3 days that Steven could be released this week if he remains stable.  Chemo is scheduled for Thursday.

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Sunday, August 19, 2001

No New News

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Saturday, August 18, 2001

Dr. Cumby filling in for Dr. Barnes,  He said "No new news is good news". White blood counts up and Red Blood cells stable. 

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Friday, August 17, 2001

Steven's Temperature has come down.  He will receive Daunorubicin again today. Scheduled to receive Asparaginase next week.  Could possibly be released in a week or two, but would still have to come every day for blood work.  Dr. Barnes will be out all next week for medical convention. We received note for withdrawing Steven from Troy State University Fall Quarter.

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Thursday, August 16, 2001

 Steven was given meds for nerves, he will receive Daunorubicin 3 times a week, Steven will also receive Vincristine, Prednisone daily for 14 days(120 mg) In the second month Steven will receive chemotherapy to the base of the spine and also to the brain.

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Wednesday, August 15, 2001

Dr. Barnes again confirmed acute lymphocytic leukemia (ALL). Chemotherapy will start on Thursday 16th. Steroid treatment also starts on Thursday (Prednisone).  He said side effects will be nausea , hair loss heart problems, and possible allergic reactions.  Dr. Young said that UAB will be looking for a chromosome called Philadelphia Chromosome.  If this chromosome is not present there is a good prognosis of 25 - 30 percent chance of a cure and a 80 - 85 percent chance of full remission.  If Philadelphia Chromosome is present then the prognosis is not as bright.

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Tuesday, August 14, 2001

Steven had a routine chest x-ray to ensure the Hickman catheter was properly placed.

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Monday, August 13, 2001

Steven had Biopsy performed on hip to send sample to UAB. Steven also had a Hickman device implanted into his heart.  This allows him to receive chemo and other medications without having to be stuck repeatedly.  Went through both procedures well. They started  Antibiotics.  

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Sunday, August 12, 2001

More Blood

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Saturday, August 11, 2001

Transfusion. Can't start Treatment for Leukemia because Bone Marrow biopsy scheduled for Monday 13th

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Friday, August 10, 2001

Catscan was cancelled. and Steven was asked to return to Dr. Young's clinic.  Diagnosed with Adult acute lymphocytic leukemia (ALL) by Dr. Young, Medical Clinic, Troy, AL,; Steven was sent to The Montgomery Cancer Center, Montgomery, AL.  Dr. Barnes Confirmed the diagnosis.  Steven was highly anemic so he was admitted to Jackson Hospital, Montgomery, AL.   Steven received several transfusions. 

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Thursday, August 9, 2001

Steven visited Dr. Young, medical Clinic, TROY, AL, Steven was having head-aches, dizziness, and tired easily.  Dr. Young ran blood work and scheduled a catscan. for the 10th. 

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Link Steven's Progress of Treatment for Leukemia at UAB