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Saturday, September 8 - Wow, time sure flies! I hope many are staying updated through Jeff's Cage Pages. He really enjoys the Cage Pages, as it is a little simpler than a website change and allows for message posting from anyone. All I can say at this point is that Jeff is doing GREAT! His doctors continue to say that he is doing better than expected. You can definitely tell that the chemo has done it's thing - he is very red (like a sunburn), dry skin, mouth sores, sore throat, blood counts are down to almost nothing. His white cells are at 140 today (normal is 4,500 to 10,000). But that is just making way for the new stem cells to take hold. We are anxiously awaiting first signs of engraftment - which occurs 10- 28 days following transplant. I guess the first sign is when his white blood cell counts start rising again. They keep us informed with a big calendar on the wall counting his days "post-transplant" (we are on day +10) and it shows his blood counts (whites, hemoglobin & platelets). He hasn't had any fevers, pain is at a minimum. Although they do have Jeff hooked up to a pain pump which delivers a constant stream of pain meds and allows for Jeff to push a button and get a booster dose of Fetanyl. It hurts him to swallow or talk or drink, so he is also on a liquid diet.
We are in the hospital looking forward to tonight's big game - USF versus Auburn!
Monday, August 27 - Tomorrow is Jeff's second "birthday". He is scheduled to get his stem cell transplant around 9 pm. They say it is similar to getting a bag of blood, just a small bag of cells hung from his IV and enters the body through his IV port. Then, we wait. It will take a few weeks to a few months for the new cells to "engraft" and replace Jeff's immune system.
Wednesday, August 22 through Saturday, August 25 - Jeff has had 4 days of pretty intense chemotherapy. Although looking at him, you might not know he is sick at all. But they have to destroy Jeff's immune system so make way for him to get a new one! This has been an amazing eduction in the intricacies of the human body and it's systems.
August 22nd will be the day I will now be admitted into Moffitt Cancer Center and after 4-5 days of intense "cell killing" chemo, I will be scheduled to have the transplant on Tuesday, August 28th....more info to come. Thanks for your prayers and outreach!
SUNDAY, August 12 - Sorry for the delay in updating the web site. The last few weeks have been full days at Moffitt almost every day for units of blood, platelets, infusion therapy, shots, various tests, physical therapy, doctor visits and more. Some days, I am at Moffitt for over 10 hours. I am handling everything very well, per the Doctors! Think I am now at 38 units of blood or platelets this go around in 2007 and a total of 92 in the last 5 years. So many of you have donated blood and I have received it!
They delayed the transplant, in my opinion, due to some back and forth with the doctors regarding precautionary treatment decision prior to the transplant. The delayed date and new date was confirmed on Friday, August 10th, so it appears August 22nd is a solid confirmed admittance date.
The next few weeks, leading up to the transplant in mid-August:
Right now, my infection fighting ability is low due to all the chemo. I have to watch everything I eat, touch, and do. This means staying away from crowds and avoiding any possible chance of causing an infection, fever or other complication before the transplant. If I get the slightest bit sick, it will delay the transplant. As the days go by, I hope to get stronger and my blood counts get into a safe area to get out for a few activities, including going to my little brother in the BBBS program’s football games.
August 12th is my hospital admissions date, if all goes according to plan. All we know is that the donor is a 47 year old male, living in the
SATURDAY, July 21 – SATURDAY July 28 - So nice to be home again and out of the hospital! I was not 100% sure I would be able to go home prior to the transplant though. Although I will have to be at Moffitt almost every day from now until the transplant, it is nice to be able to be home at night.
The week’s activities included having 4 units of blood and around 14 units of platelets (it is hard to figure platelets, as they come in bundles of donors together and the amounts of platelets someone can give, vary greatly). As of Saturday, 28th, I figure I have now had around 50 units of blood or platelets from the donor bank. Many of you have contributed and it is pretty neat when I get a “directed donor” bag and know who is flowing into my blood system at the time! Please keep them coming, as I will be in need of much more in the months of August and September (please see our web site tab titled “Jeff Blood Donation” if you can contribute blood or platelets…thank you).
The Physical Therapy and general rehab is going well, but I need to keep up the pace, especially before the transplant. Beth has been my regular Physical Therapist and seems to have a good handle on what I need to get my balance back better and improve my strength. Adam and Chris have also been regular rehab helpers too!
MONDAY, July 16 - FRIDAY July 20 - After settling into the hospital Sunday night, I handled 6+ hours of chemo every day from Monday through Friday. The days are typically filled with interruptions every 10 minutes from Doctors, Nurses, Tech’s, and other Moffitt employees. They really do a thorough job to make sure you are in the best of care. I didn’t get out of the room much, but stayed infection free and was discharged on Friday. The plan is for me to go back to Moffitt next week, probably every day, as my blood counts will be plummeting rapidly. I will need more blood and platelets after 5 days of chemo. So far, I have had around 32 units of others blood or platelets this go around and around 86 total since my original diagnosis in April 2003.
SUNDAY, July 15, 2007 - After a few weekw of outpatient visits to Moffitt, Jeff is back in the hospital as an inpatient in room 305. I am here to be for a Consolidation round of chemo, in preparation for the transplant. This is needed to kill any remaining leukemic blasts prior to a transplant. I feel pretty good and infection free going into this, so hope it will be easier then when I was here for 36 straight days in May and June. My rehab and physical therapy is going well and I am down to using one cane out of the home and NO canes walking around the home! I will be having 5 days of chemo and hope to be out of here by Friday, so will keep everyone posted! GREAT NEWS: According to the transplant team, they have identified a perfect “10 out of 10” donor and believe they can move things forward to do the transplant in mid August. This is good news and I need to prepare for this, both mentally and physically. The unknown donor, will also be prepared and they will have us both work up to transplant date. WEDNESDAY, July 4, 2007 – Happy TUESDAY, July 3, 2007 – We started our MD Anderson adventure at 8: 30 am with New Patient registration which included a visit with the doctor’s nurse to inform us of the day’s schedule. Then Jeff had blood labs drawn (14 tubes of blood to test), a chest x-ray and a bone marrow biopsy. We had a Patient Coordinator named Barbara who basically took us from place to place to get us oriented. She took us to the cafeteria and explained the procedures and checked us in at each lab/clinic. They really run on time around here and are fairly precise with the scheduling. Finally, we talked to Dr. Thomas’ PA, Lori Smith. She got the history of Jeff’s case and also ordered a few more tests for Dr. Thomas. So Jeff had a MRI of his brain at 7 pm tonight too. Moffitt was great and sent a bunch of medical records, films, and slides, but apparently a second opinion also means they want to pull their own tests. Good news is that Jeff’s labs are looking consistent! Platelets are 135, hemoglobin at 12.3 and white blood is 2.8. This was a long day, but we are really impressed with the whole place. MONDAY, July 2, 2007 – Jeff had labs drawn at Moffitt (counts are good and continue to hold steady) and he had Physical Therapy also. Then, following a day of work and preparations, we flew to SATURDAY, June 30, 2007 – A morning outing (since Jeff’s infection fighting blood counts are good enough) included a visit and send-off with the fall Team In Training group with the Leukemia and Lymphoma Society. Kim did the 20+ mile bike ride and Jeff and THURSDAY, June 28, 2007 – Today’s blood labs continue to look good. We met with Dr. Sotomayer’s nurse practitioner, Kathryn Low, to get results from Monday’s biopsy and discuss the next steps. Well, she didn’t have the results, but did examine Jeff and say he looks good. We set up an appointment to see Dr. Lancet (Moffitt’s head Leukemia doctor) for July 12. Then we had an appointment with Dr. Ernesto Ayala – our favorite bone marrow transplant doctor. He is so great! He DID have results from the biopsy from Monday, which reported 1% blasts. So… the word of the day is REMISSION!!!! That is the first time we have heard that! First hurdle complete! He also said they have identified 4 possible donors and have requested additional blood draws for more specific testing on them! All great news! Dr Ayala spent lots of time with us explaining all the aspects of the bone marrow/stem cell (they are basically the same thing) transplant. He also discussed why a transplant is recommended in Jeff’s case. Poor risk indicators were chromosonal abnormalities and that Jeff had solid masses. On the other hand, there were good indicators too, such as Jeff achieving remission, having good response with the first leukemia and having low (versus extremely high) white blood cell counts. We discussed with him that we were going to get a second opinion from some doctors at MD Anderson (a top 3 cancer center and largest for leukemia) before we commit to the transplant. He is very supportive. MONDAY, June 25, 2007 – Jeff gets another bone marrow biopsy today. We think this makes about 14 total (since 2003) so he knows the drill. He also finished an hour work-out with the Physical Therapist beforehand. He is enjoying the PT and it really seems to be making a marked improvement. Jeff has pretty much put the walker aside in favor of two canes. His walking problems seem to be related to balance issues rather than pain or leg strength. The doctors feel that physical therapy, time and lots of practice will be what improves his walking. They believe the lesions/tumors in his spine are reduced enough to not be causing the problems, but the lesions have left some lingering injury. THURSDAY, June 21, 2007 - Jeff was at Moffitt today for blood lab tests, an IV antibiotic and physical therapy. His blood counts look GREAT! His platelets are up to 184 and white blood is 3.38 (both are in the normal range) and hemoglobin is 10.1. He is still a little weak, but continues to improve. He is still using his walker and many days uses only the cane. His balance and strength are improving with physical therapy. We expect a quiet and restful weekend and are back at Moffitt on Monday morning for another bone marrow biopsy. Hopefully this will finally give us some answers regarding "next steps".
MONDAY, June 18, 2007 - It has been nice having Jeff home and he sure is enjoying the extra freedom. We have been very good at keeping up with his medications and he has not had a fever at all since coming home. He went to Moffit today for blood labs. We were thrilled with the results.... ready? Platelets are 159 - which is normal!! And his white counts (infection fighters) are above 3.0. He is also no longer neutropenic, so his dietary restrictions are lifted. His hemoglobin is still less than 10, so he remains somewhat tired. But his attitude and outlook are upbeat - as always!
FRIDAY, June 15, 2007 - Now it is medications from home(5 or 6 of them). Plan is to repeat the bone marrow biopsy on June 25th and the results from that one should lead us to "next steps" to take in Jeff's treatment. Until then, he goes to Moffitt twice a week for blood lab work, physical therapy and IV antibiotics. Jeff's diet is a bit restricted and he has to avoid crowds and sick people as his immune system is still not that strong. He is doing remarkably though. We are trying to manuever the walker around the house and make accommodations. But he is definitely enjoying being at home. (And so is Dixie, Kim and Vera.)
THURSDAY, June 14, 2007 - From Jeff...
Good news from
I am very thankful to be home, albeit only for a few weeks most likely. During this time, I will have regular visits at Moffitt, but will be considered outpatient vs. inpatient. I truly appreciate all the help from my lovely wife Kim, my one-of-a-kind Mother, and so many hundreds of family and friends! You have overwhelmed me with love and support!
WEDNESDAY, June 13, 2007 - Blood counts continue to rise. Jeff has to hit a white count over .5 in order to go home. Maybe even tomorrow. He hasn't received blood or platelets for awhile and they don't expect him to need any more for a few weeks, or until he starts more treatment. No actual results from the bone marrow biopsy yet, but there is enough information for the doctors to say they feel the immature cells they see are normal recovery. So they are not labeling Jeff "in remission" at this point, but are getting comfortable that he is recovering from the chemo very well.
TUESDAY, June 12, 2007 - Tests continue to come back with good results. Bronchoscopy hasn't shown anything other than a CMV (some type of fungal virus) they are treating with antibiotics. The lumber puncture from Friday showed no leukemia in the spinal fluid and the CT scan still looks good.
SUNDAY, June 10, 2007 - Well, today markes one full month at Moffitt. While Jeff is getting superb care here, his has grown weary of being in the hospital. The local restaurant take-out business may get a boost. HA HA! Great news again today is Jeff needs no blood products! He is holding his own with his blood counts. So today's challenge is getting rest since he has been a bit nauseous lately.
SATURDAY, June 9, 2007 - Another weekend at Moffitt. Good news is that Jeff's platelets are going up a liitle and his hemoglobin is hanging steady. So no blood or platelets today. And that pesky fever has not returned either. Jeff was feeling sick today with nausea and headache. All the antibiotics, IV drugs, anti-nausea and sleep aids really took their toll on Jeff. He sure slept well tonight though.
FRIDAY, June 8, 2007 - Another 2 units of platelets today. They need Jeff's platelet count to be at least 50 in order to perform the lumber puncture today. It worked and Jeff had a lumber puncture to inject chemotherapy (methotrexate) into his spine. This is a preventative treatment and his doctors want to do another 3 treatments in the coming month. The bronchoscopy results seemed to be good and the docs were not alarmed at anything they saw, so Jeff remains on the same five antibiotics for now. We may get more information Monday. And the long awaited bone marrow biopsy results will have to wait a little longer. The preliminary results showed some leukemic cells still in the marrow, but they are not sure the exact percentage (could be anywhere from 10-26%). The flow cytometry (a more specific test where they look at the specific cell markers) should be back Monday. We did learn that Jeff's AML is classified as a M5 type.
THURSDAY, June 7, 2007 – Today was a day of procedures. First thing to note is Jeff’s temperature is back to normal-ish (99 degrees). Early morning was a bronchoscopy to check a couple of spots or possible fungus in Jeff’s lungs. Later was another bone marrow biopsy. He also got 2 units of whole blood and 2 more platelets late in the evening. We hope to have at least some preliminary results of the biopsy and bronch late tomorrow.
WEDNESDAY, June 6, 2007 – Today, was a little rougher for Jeff. All day he had a low grade fever, a noticeable cough and was a little nauseous. By late afternoon (before the bone marrow drive at Moffitt), his fever was 104.3. They iced him down and gave him antibiotics and steroids to get his temperature under control. He was very disappointed that he couldn’t make it to the bone marrow drive event, but knew it was more important to rest and recover. By 9 pm, his temperature was back down under 99 and he received 2 units of platelets. The timing was good because one of those units was a directed donor and was set to expire at midnight.
TUESDAY, June 5, 2007 – Today was fairly busy for Jeff. He first spoke with the web cast folks from Moffitt. They wanted to video tape him for a future broadcast. Later he received 2 units of whole blood, 2 platelet units and a CT scan. He ended the day with a bit of a fever, so the nurses go into action taking blood cultures again. Hopefully, he can get a good night’s sleep – tomorrow is another big day.
MONDAY, June 4, 2007 - A fairly ordinary day at Moffitt. Jeff got a unit of platelets, compliments of our friend Scott Bragan. He was allowed to attend the monthly meeting of the Patient and Family Advisory Council at Moffitt. Jeff really enjoys working with this group and definitely was thrilled to have a bit of “normalcy” in his life for a while. Later in the evening though, he had a low grade fever. Well, that sent the medical staff into a frenzy taking blood cultures and a chest X-ray - they want to make sure there isn’t an infection brewing. He was back to normal temp in an hour.
SUNDAY, June 3, 2007 – A nice, quiet restful day. Jeff remains in the hospital and is keeping up with his daily physical therapy to help improve his balance and walking.
SATURDAY, June 2, 2007 – The most exciting thing today wasn’t the 2 units of blood Jeff got. But he was featured in an article in the St Pete Times newspaper. The article mentioned the upcoming bone marrow drive at Moffitt on Wednesday, June 6th. The link to the article is on the home page. Also, Jeff’s friend Scott Bragan delivered a great surprise – a volleyball signed by Karch Kiraly.
FRIDAY, June 1, 2007 – This is day 23 at Moffitt. Jeff has at least decorated his room (with the help of many) so it isn’t dreary at all! As his balance and walking improve, we hope we are getting closer to a release date. He is very good about doing his daily physical therapy! Blood counts are still rather low and Jeff got another unit of platelets today (a directed unit from his sister Jonell). A late afternoon MRI lasted past dinner, so that was pretty much the end of the day.
THURSDAY, May 31, 2007 – Jeff received a directed unit of platelets today. These were compliments of Jeff’s sister Jonell. They sure did the trick, as his platelets went from around 9 to 72!
Results from yesterday’s Bone Marrow Biopsy are good according to the Doctor. Good news is that there are significantly less leukemic blasts in the marrow! 8%, down from 24% 3 weeks ago. That is a really good sign! However, what the doctors wanted to see was 5% or less. So, what does that mean? Well, they want to see how the bone marrow will react in the next week (could go up, could go down) before they can determine next steps. So there will be another bone marrow biopsy next week. In the meantime, Jeff will continue the antibiotics and get another MRI tomorrow to check the places in his spine and head. Also, sometime in the next few weeks, he will get more chemo in his spine. Bottom line, he will get more chemo, but we don’t know how much or when.
WEDNESDAY, May 30, 2007 – First thing this morning, Jeff received a unit of platelets. Those platelets sure seem to drop fast overnight. He also got 2 units of whole blood later in the day. There was a bone marrow biopsy done this morning and it will take around 24 hours before we hear any results. They are checking to see how Jeff has responded to the chemotherapy. Then they can make some decisions about what comes next.
TUESDAY, May 29, 2007 – The blood yesterday sure perked up Jeff! He was in good spirits and had more energy today. We even got to celebrate our third anniversary by bringing in Olive Garden dinner. And great news today is they have started the process to search for a bone marrow donor! Insurance had to “approve” everything first and they did.
MONDAY, May 28, 2007 – Jeff got 2 units of whole blood today. The first unit was a directed unit from Kim. Although Jeff made fun of Kim when he figured out it was hers (“I guess I’ll start talking with my hands now.”), we know he appreciated the “gift of life”. Sure does hammer home the importance of giving blood! He also received a unit of platelets (which is generally a 4-pack, which means 4 people had to donate platelets to create one unit).
SUNDAY, May 27, 2007 – Nice day to watch church on the web cast. Fairly quiet around the hospital and
SATURDAY, May 26, 2007 – No new procedures over the weekend. Jeff got platelets today and got caught up with some friends and email. Continuing antibiotics for a least a week, but Jeff has done amazingly well staying away from fevers and infections. Did we mention how blessed we feel to have
FRIDAY, May 25, 2007 – Quieter day today. No chemo, no radiation, no procedures. Doctors say the CT scans show no new areas of infection and a reduction in the fluid in the lungs. All good news. As a precaution and preventative, Jeff is placed on more antibiotics. A few of these are given via his IV, which is another reason the doctors want to keep him at the hospital. They predict his blood counts to stay low and probably to get several units of blood throughout the week.
THURSDAY, MAY 24, 2007 – Still at
WEDNESDAY, MAY 23, 2007 – The doctors tell us Jeff’s blood counts will drop quickly following the chemo. We still haven’t heard if there will be additional chemo injections into the spine or not. However the doctors did report that there has been a dramatic decrease in the size of the lesions in Jeff’s head. Another great report!
TUESDAY, MAY 22, 2007 – Although no chemotherapy today, they keep Jeff pretty busy with IV drugs and pills. He is on several antibiotics – one for his cough, one for his port after surgery, one for his mouth and one for his lungs. He remains tired, but hanging in there. His biggest accomplishment today was walking 200 steps without the use of the walker. His balance is slowly improving and the pain in his upper back (which is what started all of this) has disappeared. Praise God Jeff is responding well to the treatments!
MONDAY, MAY 21, 2007 – Last day of chemotherapy for this round. He has received both Cladribine and Compazine chemo drugs during this protocol. Jeff is beginning to feel the effects of all the chemo, really tired. Overall he is handling everything well. The anti-nausea drugs have really done their thing and kept him feeling fairly good. The doctor was impressed that Jeff has gotten through all of the chemo without spiking a fever. Jeff had a MRI at the end of the day to check on the lesions they saw in the membrane surrounding his brain.
SUNDAY, MAY 20, 2007 – Day 4 of chemo. Fairly quiet day in terms of procedures and tests. Jeff is handling the treatment really well. He had several visitors and has been touched by the out pouring of love and support during this time. Kim and Dixie were out in
SATURDAY, MAY 19, 2007— Day 3 of 5 days of high dose chemotherapy. Hopefully today will be more restful as there are no scheduled tests or procedures. There have been NUMEROUS cards, emails, gifts and visitors and we thank you for your sharing your love for Jeff. Also we really appreciate all of the prayers for Jeff’s healing.
FRIDAY, MAY 18, 2007 – Last day of radiation! The doctor doesn’t feel he will need more radiation at this point. Also the 2nd day of chemo. Jeff has really tolerated the chemo well so far. To his credit, Jeff good physical condition at the start of all of this is serving him well.
THURSDAY, MAY 17, 2007 – Day 7 of radiation and Jeff had surgery to insert a medical port. The port is under the skin and serves as an access to his veins. This means he won’t have constant IV pricks and tubes dangling form his arms. We loved the port last time and expect the same. He had his old port removed less than a month ago.
WEDNESDAY, MAY 16, 2007 – Radiation day 6. More surprises with the diagnosis. The doctors say they found Myeloid Leukemia rather than the Lymphocytic he had last time. So it seems we are fighting AML rather than ALL. But the plan is still the same – chemo to remission to transplant. It will be a different regimen of chemotherapy though.
TUESDAY, MAY 15, 2007 – Day 5 of radiation. We also got some of the results back. It seems they identified 24% leukemic blasts in the bone marrow. So we will begin a regimen of chemotherapy today or tomorrow. The plan is chemotherapy to remission to bone marrow transplant. (more information on marrow donation at www.marrow.org)
MONDAY, MAY 14, 2007—Day 4 of radiation and tests, tests, tests. Today Jeff had a CT scan, MUGA scan of his heart and Bone Marrow Biopsy. The radiation really seems to be doing its thing. The pain in Jeff’s back has diminished substantially and his balance and walking have improved as well.
SUNDAY, MAY 13, 2007– Day 3 of radiation on the thoracic spine (top part, behind Jeff’s throat). Doctor says the spinal fluid looks clear, but more specific tests to come. The MRI shows no lesions in the lower portion, but a small spot on the outside membrane of the left lobe of the brain. Also the fluid on Jeff’s lungs is being treated with antibiotics. Hopefully tomorrow’s scheduled CT scan and Bone Marrow Biopsy will tell more.
SATURDAY, MAY 12, 2007— Day 2 of 8 for radiation. Also steroids to treat the lesions. At this point the doctors are treating the symptoms while we wait for a diagnosis. The lesion on Jeff’s spine is pressing against something that is causing some neurological effects—balance problems, tingling legs, etc. To prevent any of those symptoms form being irreversible, it is important to emergently treat the problem.
FRIDAY, MAY 11, 2007—A day full of tests to include the MRI (which you can get some good, relaxing drugs to get you through) and the lumbar puncture to get a sample of spinal fluid to test. While in the spine, the doctor also administered a dose of chemo therapy to either treat or prevent any tumors or cancers in the spinal fluid. Also, Jeff was started on an eight day regimen of radiation for the lesion in his spine that showed on the first MRI.
THURSDAY, MAY 10, 2007—Following an MRI at an outside location, Jeff was notified of a possible lesion on his spine and referred to his oncologist at Moffitt. By 1 pm, Jeff was in a room at Moffitt and scheduled for a full MRI and Lumbar Puncture for the next day.
