Saturday, June 28, 2008

Some Pictures of the Good Days

A larger view of the Profile Picture (Me and Marissa, 9-23-07)
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Panama City Beach Vacation 2008 (Marissa's Family)

From Left: Christine, Gary, Ashleigh, Maison, Owen (top), Jack, Meaghan, Nathan, Marissa, Me

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Houston Astros vs. Milwaukee Brewers June 10, 2008

From Left: Hunter, Dawson, Me, Marissa

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Mom and Dad at the Astros Game

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IMAX movie at the Houston Museum of Natural Science June 22, 2008

From Left: Chris, Me, Chad

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Wednesday, June 25, 2008

The Effects of Chemo

In the last post, late Friday night, June 13, after two days of chemotherapy, I had decided this chemotherapy thing wasn’t so bad. Basically, the process consists of going to the Infusion Therapy Dept. at appointment time, and being taken to a nicely appointed treatment room. The rooms are equipped with relatively comfortably beds, nice flat panel TV’s, and DVD players, with a comfortable chair for one caregiver. After starting up a movie, the nurse hooks up my chest catheter to the IV line and the chemotherapy chemicals begin to flow.

As you know, as of late Friday night, I really hadn’t felt any effects of chemotherapy. When I woke on Saturday morning, it was a different story altogether. I had come down with flu-like symptoms, nausea, vomiting, lightheadedness, fatigue, etc. You name the symptom, I had it. Needless to say, the next few days were little more than a blur. I really thought at the time that I was conscious and coherent. I realized later, maybe around Wednesday or Thursday that I was not. I spent most of Thursday and Friday catching up on the few days of my life that I had just missed. I returned telephone calls that I had missed, reread all of the blog comments, reread emails, and reviewed all of the mail that I had received. The mailbox at the apartment is full of cards every day. I must tell you, nothing lifts my spirits more than reading all of your cards, blog comments, and emails. I really wish that there was some way for me to acknowledge each one. Please know that each one is greatly appreciated.

Late Friday afternoon, June 20, I had developed a low grade fever. Fever, of course, is bad news for a chemo patient. Tylenol is off limits, because as a fever reducer, it masks the signs of infection. I have strict instructions with regard to monitoring fever, if it reaches 101˚F I must go straight to the Emergency Center. Friday evening, I was nearing 100˚F. Marissa stepped out for a moment to “make a phone call”, and returned to the apartment with a group of my friends from Tennessee. Chad Dunivant and his wife Jessica, and Chris Chandler and his wife Amanda had made the 13 hour drive to visit. The whole weekend had been planned without me. I was completely caught off guard when they walked through the door. It could not have been a better surprise. Over the next few hours my fever had dropped. I even felt good enough later in the evening to go to their hotel room and visit for a couple hours.

After returning back to the apartment for my nightly medicine regimen, I turned in around midnight. I managed to get a couple hours of uninterrupted sleep. Around 3:30 am I woke with a fever. It had returned, this time a little more severe. I lied in bed for a while, wondering what to do, wanting to go back to sleep. I decided that I should wake Marissa and check it out. The thermometer read 101.3˚F. I guess this meant another trip to the Emergency Center. At least this time I wasn’t going in for unbearable pain. We ended up staying in the EC for about 8 hours. During my EC stay, my fever reached nearly 103˚F. They got my fever under control with Tylenol, gave me a few antibiotics through my IV, and prescribed me a whole host of new medications to take home to treat any infections I may have as well as to treat the thrush I was also diagnosed with. Thrush is an infection that lives in the mouth and throat and that is painful all the way down the chest into the esophagus. It can be caused by oral antibiotics, which of course for me at this time are plentiful. They also took some blood and urine cultures to check for infection. The cultures, they said, would take 48 hours for results. The antibiotics were precautionary.

After getting out of the EC around lunch on Saturday, I spent the rest of the day sweating out my fever. My visitors were able to come to the apartment Saturday evening and watch a movie. I just didn’t feel up to doing much more. Sunday morning turned out to be a different story. I woke up feeling good. I had a few appointments to make at MDA in the morning, but I was able to meet my friends around lunch and spend the rest of the day exploring Houston. We ate lunch at Chili’s, where I decided to splurge and order a kid’s ribs and fries meal. This was the most I had been able to eat since the chemo. After lunch, we went to Houston’s Museum of Natural Science. We saw exhibits on geology, dinosaurs, and Leonardo da Vinci. We also were able to catch an IMAX movie on the Grand Canyon. I was definitely feeling good on Sunday, and I was able to take advantage. The day ended with an Italian dinner at Prima Pasta around 10pm. I was completely exhausted, but in a good way.

My friends left Monday morning around 9:30 am after meeting me at the hospital for a quick tour and breakfast. Having them come and visit was definitely medicine for my soul and a terrific surprise. They did not get home until midnight on Monday, and they all had to be up bright and early Tuesday morning to get back to work. I cannot express to them how much their visit meant to me. The rest of the day I had a quick follow up appointment in the EC where I was told my white blood cells were back to normal. On Saturday they were at 0.6, Sunday they were slightly higher at 2.3 and on Monday they were at 10.2. The normal white blood cell count is 10, so everything is back on track with me regaining my strength and immune system, much quicker than expected. I guess that is just the healthy 25 year old in me making that rebound.

Tuesday was another great day for me. I did not have any appointments so the entire day was mine to enjoy. The nurse practitioner called me for a follow up consultation on the phone. My blood and urine cultures came back, and they were both normal with no signs of infection. I count my blessings and rejoice for each good day I have and all the good news I receive.

That brings us to today, Wednesday, June 25. I had an early appointment for lab work this morning, but we did not quite make it there on time. I woke up and took my shower with a full head of hair only to step out and notice that in that span of twenty minutes most of my hair had fallen out. Rather than leave the house with only small patches of hair I had my mom shave my head quickly before my appointment. I knew losing my hair was part of the process, and I suspect in a few days the rest will be gone. After my lab work I was met at the apartment door by the FedEx delivery man. Again, I found myself surprised. My coworkers at Gwinnett Sprinkler all pitched in to replace my IPOD after reading that it had been stolen out of our car. So not only do I have an IPOD again, but this new one is even better than the one that was stolen. This afternoon I have another follow up call with the nurse practitioner in the ER. Friday is my last follow up appointment with the Emergency Center for my neutropenic pathway (this is MD Anderson’s special program for monitoring patients with low blood counts). I am feeling well enough to get out and enjoy my free time. This is the best I have felt in a long time as I am pain free and able to walk on my own without my wheelchair. Walking is great exercise for me. The weather is so hot here that we usually try to avoid outdoor activities and today I think we will visit the local mall for the first time.

I have received countless calls inquiring on the status of my posts. I am astounded by the number of people who check my blog numerous times throughout the day and I apologize for the delays, but as always I remain grateful for the prayers and support.

***Happy Birthday to Meaghan, June 25, we wish we could be there to celebrate with you, but we hope you have an awesome day and we love and miss you!!

Friday, June 13, 2008

Good Days and Bad Days

As promised here is a new post sooner rather than later. We have a lot to discuss for only a single day. Wednesday evening just after completing yesterday’s post my pain began to intensify quickly. I tried taking a hot bath, and I took my fast-acting (break-through) pain medication, but nothing would shake the pain. I began to compare notes about the last 3 nights and noticed that my nerve pain symptoms were worsening. Fortunately I had a pain management appointment this morning to review my medications.

As we were leaving the apartment Thursday morning to go to our appointment, my dad went to pull the car around and noticed it would not start. After further inspection he also discovered the side window was broken out. I assume that the alarm system worked because the hood was up and the battery disconnected. Someone had broken into our car and stolen our IPOD and FM tuner out of the glove box, as well as our GPS power cord and mounting bracket. Probably much to their disappointment we had the actual GPS unit with us. We did not have time to evaluate further damage as we still had an appointment that wasn’t going to wait. We had just missed the shuttle bus from our apartment to the hospital by ten minutes. The bus, however, doesn’t include provisions for my wheelchair. Our car insurance has a deductible, so there probably wasn’t even enough damage to claim. Much of this apartment complex is dedicated to cancer patients. Also, my wheelchair was in the car, untouched. But, in my opinion, that is one desperate thief to steal from a cancer patient’s vehicle. God bless him/her. It appears that the earliest appointment for the window replacement is Wednesday, June 18. The internal contents taken from the car must go on homeowners insurance, which is of course filed under a separate deductible.

The first appointment on Thursday was with Dr. Lalani, a pain management specialist. This was a follow-up appointment that had been scheduled last week when I was discharged from internal medicine (inpatient). I was glad to have this appointment set up because over the last three days my pain symptoms have gotten worse. The nerve pain seems less and less responsive to the medications prescribed to treat it. The major downside to it all though is that the side effects (e.g., drowsiness! etc.) are showing up stronger than ever. I have discovered that chronic drowsiness is the most debilitating feeling that I have ever experienced. Dr. Lalani decided to add a few new additions but took none away from the regimen. Obviously, I was a little concerned that adding more narcotics was going to make me drowsier. Dr. Lalani said that it takes my body about a week to acclimate. He promised me that in a few days I would see a 70% - 80% decrease in drowsiness.

After a quick appointment with Dr. Lalani, Marissa and I set off for the Infusion Therapy clinic. For our 11:00am appointment we arrived at 11:05am. We were taken from the lobby waiting area around 11:45am. They started with vitals, and then placed me in a room very similar to an inpatient room but a little more lavish. The drugs were all explained again by the nurse, but it was all a little too much to absorb in one sitting. I have 3 main chemotherapy drugs: Ifosfamide, Vincristine, and Doxorubicin. There are a couple of others that are administered along with these three main ones for side effects. I do not know all of the details on these. The Ifosfamide is given at the first of the appointment. It is set up for a 30 minutes drip time. The Vincristine is set up simultaneously with the Ifosfamide and set up for a 4 hour drip time. The Doxorubicin is set up late in the appointment. It is set up for a 24 hour drip time along with a 24 hour drip of mesna, some type of side effect medicine. So far all is going great with the chemotherapy. I have not seen any effect of nausea, fatigue, vomiting, etc. The only thing that I have noticed is a slight aversion to my dinner tonight. My tastes seemed a little off and nothing seemed appetizing. After four hours in the chemo treatment, the nurse says a simple, “You’re done! I’ll see you tomorrow…” The treatment doesn’t feel any different than receiving a standard saline solution.

After chemo treatment on Thursday night, we all came home to an apartment with no cable. When we signed the lease on the apartment last Friday, we were told that cable was turned on in the room but billed under the previous tenant’s name. They said when the cable month expired we would need to transfer it into our name. The previous tenant did in fact have TV service but did not have internet. We decided to call Comcast to see if we could just add internet. Comcast said that they did not show record of any type of service since December, 2007. We spoke with a Comcast rep Saturday morning outside the apartment who was nice enough to handle the whole situation for us. He gave us a package deal on the internet and TV, changed the service to our name, and personally came back on Sunday to connect the service. He also said that since we had alerted Comcast of service in the apartment, they would schedule someone to disconnect it. Thursday night, June 12, we arrived and had no internet and no TV service. It quickly became apparent what had just happened. The rep took care of our service hook-up quickly over the weekend and Comcast had scheduled our “Free Cable” to be disconnected during the day on Thursday. My dad quickly scheduled a service call for Friday to reconnect the service. We were assured that no one needed to be home for the service call. Friday evening we arrived home to find once again that the cable was still down. A call to Comcast revealed that, “the tech knocked on the door, no one answered, and he postponed.” The next available appointment is Wednesday, June 18.

To top off the Friday the 13TH story, we also arrived home Friday evening to not only find that the cable was still down, but now the air-conditioner was down and there was no hot water. A quick call to the after-hours line at the apartment complex saw a repairman in about 30 minutes to address both of these problems. If only Comcast had this type of customer service.

Back to medical topics for a moment, I had a follow-up appointment with Dr. Lalani Friday morning. He had scheduled a pain block steroid injection in my spine. The two shots were located between the L4 and L5 vertebrae. The injections came with a little bit of local anesthesia. The Doctor said the anesthesia would block my pain for approximately 6 hours. After 6 hours, the pain would return for about two days until the steroids started to take effect. The half-life of the steroids is approximately 3 weeks. Having this long-term pain relief should allow me to stop taking the fast-acting Dilaudid pain pills. I think these are the ones causing the bulk of my drowsiness. Also, Dr. Trent thinks that the Chemo, if effective, could shrink that tumor enough in as little as 3 weeks to relieve that nerve pain permanently. I could not be more excited at the idea of permanently relieving this hip pain.

In summary, we have had mixed emotions over the last two days. Always mentioning the positive first, my first chemo treatment is well on its way, and my hip pain is seeing some much needed relief. On the other hand, we were victims of theft from our unattended vehicle, we lost our cable, internet, air-conditioning, and hot water. Fortunately, the latter two have already been addressed.

Wednesday, June 11, 2008

Chemotherapy, not Surgery...

I am sorry for the delayed post. I have a lot to cover since my last post on Saturday, May 31. Saturday evening was quite uneventful. After Marissa and my dad arrived, we managed to squeeze in a little family dinner before going to bed. I guess that 13.5 hours on the road is a little tiresome. I am just fortunate that I did not have drive. I do not believe that I would have made the trip.

Sunday morning, after a decent night’s sleep, we decided that we needed to run some errands. I was able to get out a little and see Houston. We went to Target to pick up some things that we forgot to pack, then went to the Holocaust museum of Houston. We also ran a couple of other errands, trying to fill the day, as we were all anxious for Monday morning to come.
In late afternoon we got back to the hotel to enjoy the much needed air conditioning. Houston is setting record high temperatures that make simple tasks exhausting. After trying to get some rest I could not get my pain to subside. The pain is a little different than what you would expect, it actually worsens while lying down trying to rest and is better while being active and moving around. Of course you cannot be active 24 hours a day. Because of this I have increased anxiety about the nights and the pain that comes along with them. The pain medicines that I have been prescribed allow for extra dosages as needed. I regulate my medicine saving the extra dosages for the nighttime. Sunday night at 10pm I took my extra dosages. At 11:30pm the pain I was experiencing was worse than ever. The decision was made to go to MD Anderson’s Emergency Center. I arrived around 11:45pm and fifteen minutes later was with the doctor. The doctor decided to start an IV and a course of Dilaudid. One hour later, I had no relief. They started another round of Dilaudid. One hour later, still no relief. They then decided to supplement my Dilaudid IV with very strong Percocet tablet. Again, one hour later, still no relief. At this point I am getting a little concerned that the doctors cannot come up with a solution to relieve my pain. However, they seemed unconcerned, and tried yet another round of Dilaudid. This time, though, they gave me double dose, which finally brought relief. This relief finally came around 5am and I was able to catch an hour or two of sleep. Around 7am, I was discharged from the Emergency Center and sent home.

When we left the Emergency Center, we headed straight for the Sarcoma Center admissions desk. We had been speaking with the people at this center all during the previous week, so they knew who we were and were familiar with our case. They were, however, very surprised to see us show up in person. We have learned the hard way that there is a lot of red tape to cut through before receiving care at MDA.

We were told by Dr. Sharma that MDA had received everything that they had requested with regard to medical records, pathology slides, scan and x-ray films, etc. Tamara, our assigned case worker with MDA, told us that she had not received this information. She also told us that we could not just show up at the front door and receive care. I think she misunderstood our intentions. As we explained our situation, she began to sympathize and reluctantly help us gather information. She reluctantly agreed to try to expedite our pathology report. She also began running down all of our insurance coverage details. She said that she would let us know when she had either a question or an update. Our day ended much like it began, with a clear objective…hurry up and wait.

The rest of Monday was quite uneventful. I was feeling the effects of a night full of intravenous pain killers. I was able to obtain some much needed sleep, as I hadn’t slept but roughly 6 hours in the last 48 hours. I woke up in late afternoon to the sound of rumbling stomachs. Marissa, my mom, and my dad were discussing dinner plans. We drove around searching for the one meal upon which everyone agreed, Taco Bell. And not just Taco Bell, we decided on 4 Taco Bell kid’s meals. Also, while I had slept, Marissa had discussed my inability to manage my pain with Dr. Sharma. The pain medications that were prescribed were becoming less effective with each dose. At the time, I was taking Percocet 10mg/650mg, Neurontin 600mg. Dr. Sharma said that she could write a prescription for a tablet Morphine (MSContin 20mg). She tried to call in the prescription to a Texas Walgreens, but apparently MSContin has strict governmental regulation and could not be called in to Texas. The work-around: Marissa’s sister Meaghan volunteered to go to Dr. Sharma’s office in Georgia pick up the prescription, have it filled at our local Walgreen’s, then Fed-Ex the package to me early morning overnight delivery.

Monday night, as I expected, was another sleepless one. I think I took 8 showers throughout the night, both as a pain reliever and as a way to pass the time, alone, as everyone slept. The package containing my morphine was scheduled for delivery around 7:30 to the hotel front desk. It arrived promptly, as I was sitting in the lobby, anxious for the arrival of the truck. I made my way back to the hotel room for a glass of water to wash down the pill. I was surprised to see that the maximum prescription I could receive was only 9 – 20mg pills. The number of pills in the bottom of the small pill bottle did not even cover the bottom.

Tuesday morning we were informed by the hotel front desk that we had not made adequate reservations for our room. We were told the hotel no longer had any vacancy and that our room was no longer available. After getting a little pain relief from the morphine tablets, we set out to find a new room. The only hotels with room vacancies were not fit to stay in, so we had to stay in a hotel twenty miles out of town. Our hotel reservations later became irrelevant because shortly after check in my pain returned. I again made the decision to return to the Emergency Center at MD Anderson.

The doctor on staff at the EC happened to be the same doctor from Sunday night. Fortunately I was able to skip the description of my pain and I was immediately administered the effective doses of pain medication. I had however one new pain symptom-in the right side of my chest, shoulder and neck. The doctor was worried I may have a blood clot causing the new pain so a chest CT scan was ordered as well as an x-ray of my left leg to ensure the cancer had not metastasized into my leg. The tests came back clear but consumed the night, and everyone ended up sleeping at the EC waiting area. Thankfully the hotel was kind enough to not charge us for the night.

Wednesday morning I was admitted as an inpatient at MD Anderson via Internal Medicine for the purpose of “pain management.” I was admitted to Internal Medicine Department as my pathology report was still incomplete. Had the pathology report been completed and reviewed I would have been admitted to the Sarcoma Department and monitored by Sarcoma specialists. At this point we were all excited to be admitted not only to manage my pain, but we were also hopeful that this would instill a sense of urgency in the Sarcoma Department. We were told upon admission that this would likely be a three or four day stay.

Over the next few days our reasons for excitement were realized. We began to see one doctor after another seemingly hour by hour. As an inpatient the first priority was to get my pain under control. With the pain management doctors came many new medications and dosages, and by the end of my stay my pain seemed to be managed. Also during the inpatient stay the doctors began running additional diagnostic tests for the purpose of verifying and locating my tumor. These tests revealed a possible misdiagnosis in Atlanta, not in the diagnosis of sarcoma, but the fact that there were multiple abdominal and pelvic tumors rather than a single large tumor. The tests also confirmed the malignancy of the spot seen on my liver and revealed additional malignant spots on my lungs. They told me that a large portion of my pain was the result of bone lesions.

On Thursday the pathology report was finalized. A meeting with my new sarcoma oncologist, Dr. Trent, on Friday revealed the results of the report. My official diagnosis was Desmoplastic Soft Round Cell Tumor, which is an incredibly rare variety of soft tissue sarcoma. We have since learned from the oncologist that only about twenty people are diagnosed with this type of sarcoma in the U.S. a year. M.D. Anderson sees about six of these patients a year, as does Sloan Kettering in New York and the rest of the cases are with various oncologists across the U.S. Dr. Trent told me that I was no longer a candidate for surgery because the cancer had spread. He wanted to start chemotherapy as soon as possible. He said that radiation was not an option because of the proximity of the cancer to my vital organs. We made the decision to start chemotherapy on Wednesday, June 11. He said that the first cycle of chemotherapy would last six weeks. At that point all of the diagnostic tests would be performed again to determine the effectiveness of the first cycle of chemotherapy. I was advised to seek more permanent housing for this period of time near the medical center.

Friday, June 6, I was discharged from inpatient services. My pain medications had transitioned from intravenous to oral medications. I was now able to maintain comfortable levels of pain without being an inpatient. We had placed a call earlier in the week seeking an apartment anticipating a long term stay. Our name was added to the waiting list and not knowing when we would get an apartment we were headed back to a hotel. Just as we were completing the discharge paperwork we received the news that we had received an apartment, and we all knew that this was Providence. As we left the treatment center we had an overwhelming sense of relief. My pain was under control, my cancer was diagnosed, a treatment plan was outlined, and we were on our way to our new apartment.

Saturday was the first day any family had visited. My sister Lori and her husband Steve made the drive from Dyersburg, Tennessee, arriving around 10pm. Sunday morning we decided to drive out to the beach at Galveston. The forty five mile drive passed quickly, but unfortunately Galveston Island is not the beach lover’s dream. We had a nice lunch, drove along the ocean front, and returned home late afternoon. Sunday evening was spent as family time in the apartment. Monday morning as Steve and Lori started off for Tennessee Marissa and I returned to MDA for yet another round of testing prior to chemotherapy.

Tuesday brought more visitors. My other sister Tina, my nephews Dawson and Hunter, and family friends Ashley Roberts and Andy Grills arrived early Tuesday morning. They too made the long trek from Tennessee throughout Monday night. As they settled in and rested Marissa and I were off to MDA, this time for my subclavian catheter insertion. This line allows all medications and chemotherapy to be administered without having to get a separate IV for each hospital visit.

We had the idea that since Dawson and Hunter were visiting that they would thoroughly enjoy, as would I, a Houston Astros baseball game at Minute Maid Park. The Brewers were in town from Milwaukee and we were able to snag last minute tickets in the upper deck behind home plate. The Astros had a high scoring night that made the game a thriller. The game could not have lasted long enough as our visitors were returning back home to Tennessee Wednesday morning.

As our guests were heading out Marissa and I again went to MDA. This time for a pre-chemo blood work up. Afterwards we met with Dr. Trent to discuss any last minute questions or concerns regarding the treatment plan. The meeting ran longer than expected, into early afternoon. The nurse explained that the chemo treatments last 4 to 5 hours and that starting today would affect the schedule of the entire treatment plan. Rather than starting at 3pm and ending at 7pm every night they decided to postpone the start of chemo until Thursday morning. An appointment was scheduled for 11am Thursday, June 12. We were disappointed at the delayed schedule, but now all pre-chemo items have been addressed. Tomorrow begins our journey on the road to wellness.

Thank you for being patient. This post has been difficult to produce with all that has been happening, but now is that much more rewarding. Thank you very much for everyone’s continued response. Each and every comment has been so personally dear to me. I have really enjoyed all of my family’s visits so far and I look forward to future visits being planned with Marissa’s family and my brother. I also really appreciate all of the cards, care packages, and donations I have been receiving. The most important thing is continued prayers. Please pray for the chemotherapy to be a success and my healing to begin. Until next post, sooner rather than later.

Tuesday, June 10, 2008


I am sorry for the delayed post. We have had many requests for updates to the blog. Unfortunately, the pain medications that I have been taking prevent me from using the computer for extended periods of time. Every medication that I have been taking lists severe drowsiness as a side effect. I believe, also, that taking them all together may compound their effects. The solution that we have come up with is that I will dictate the message, and Marissa will take over on the keyboard. I promise I will get an update posted soon that will catch you up on all of the details from the date of the last post to current. Please stay tuned and thank you for being patient.

We have also received many requests for information on financial donations. We have opened an account that will be receiving charitable donations for my healthcare and living expenses during my stay in Houston. We have been told by my Oncologist that we need to make arrangements to live in Houston for at least 6 weeks. After 6 weeks of treatment, I will have all of my diagnostic tests performed again to determine the effect of the first round of chemotherapy. If the treatment is considered successful, I will be evaluated to see if my treatment may be continued in Atlanta, and monitored by MD Anderson. If the treatment is unsuccessful, I will start again at square one with a lengthy stay in Houston. For those who would like to help with our financial burdens, the addresses are as follows:

Financial Donations:

First Citizens National Bank
C/O Diane Warren
104 North Monroe
Newbern, TN 38059

Please make checks payable to Bradley Dycus.
You will receive a receipt for your contributions. Please provide a return address for this.

Our home address:

638 Nottingham Drive
Lawrenceville, GA 30045

Apartment Address: ***As of 7/26/08 we are no longer receiving mail at this address***

7500 Brompton Road
Apt. # 557
Houston, TX 77025

Thank you for your prayers and your generosity.