History

Tuesday, July 21, 2009 2:01 PM CDT

After two weeks at home and lots of TLC, Robyn was finally able to keep an appointment with her Clinical Research doctor on Monday, July 6. He told her of yet another drug trial she could try, if she was up to it. We knew it was going to be a challenge but of course Rob was all in. That week the necessary diagnostic studies were done. We returned on Monday July 13 for the follow-up appointment and learned that she could begin treatment the very next day. The second bit of good news was that the medications could be administered by mouth and at home. Within 72 hours of starting the new trial drugs, her pain was eased. She went from taking additional Dilaudid tablets 10 to 12 times a day, to only once or twice a day; on some days she didn't need any at all. Rob is still getting a continuous infusion of Dilaudid and local anesthetic in her spinal catheter and that, too, helps to keep the pain at bay. What a HUGE sigh of relief this has been! Unfortunately, the trial drugs have side effects of their own but none worse than the pain was. The major side effects of this new treatment is extreme fatigue and sleepiness. Robyn sleeps most of the time and has very little stamina these days and still she manages to play a joke on us every now and again.

I spend much of my time lying in bed next to “my baby girl", and I cradle her in my arms, and I wonder, Where has the time gone? As I look into her face, I no longer see the wrinkled brow and twisted facial expression caused by her pain wreched body; I see her an expression of peace, and I am most grateful. I am at a loss for words to thank you for the many prayers that were sent for Robyn; God heard and He answered. Amen.

Wednesday, June 24, 2009 9:33 PM CDT

So much has happened since the last journal entry, I hardly know where to begin. The week before Robyn’s last treatment of trial drugs, she experienced a pain crisis. That’s what they call intractable pain that does not respond to treatment. It was the Friday before Memorial Day and we were in Baton Rouge for an appointment with Dr. McCanless. When Dr. Mac saw the degree and intensity of pain that Robyn was in, he decided it would be best to put her in the hospital for IV pain medication; a PCA pump was started. The pump allowed Robyn to self-administer a dose of analgesia whenever she needed it. No matter how much she got from the pump it was never enough to ease the pain and the nurses had to constantly administer extra medications. A referral was made to a B.R. anesthesiologist who specializes in chronic back pain. That doctor recommended an implanted epidural catheter connected to an external infusion pump which could be set to deliver a constant infusion of morphine. The dosage could be adjusted according to Robyn’s need. This type of catheter is highly specialized, infrequently used, and not kept in stock. To make matters worse, it was a holiday weekend and the catheter could not be ordered before Tuesday. Due to her hospitalization, Robyn missed the last treatment of the second trial cycle. Finally on Friday May 29, a week after her admission to Our Lady of the Lakes, the catheter was implanted and for the next four days, the infusion rate was gradually increased. When pain medication is administered directly into the spine, a lesser dose usually does the job and with less sedation. The spinal dose is 10f the oral dose. When we left Baton Rouge, Robyn was getting 5 mg of morphine each hour. This would compare to a 50 mg hourly oral dose of morphine. Additionally, she was given fentanyl for breakthrough pain.

Wednesday June 3rd we drove to Houston. Robyn had lots of tests scheduled to evaluate the effectivenes of her treatment with the trial drugs. The trip was very difficult and Robyn was in a lot of pain. The B.R. doctor prescribed an increase in the morphine epidural infusion and now Rob was getting 6 mg each hour, and still it wasn’t helping. The infusion pump had to be turned off for the MRI and because of Robyn’s pain level, the nurse cancelled the scan. By 10:00 p.m. Wednesday evening, we were in the Emergency Department due to the pain crisis Rob was having, and there we stayed for the next three days. M.D. Anderson was 104 percent ccupied so an empty room was not available. To further complicate matters, there were very few units willing to accept care of Robyn because they did not feel qualified to deal with her epidural infusion. The units that were familiar with and qualified to manage the epidural pump were filled to capacity. Saturday afternoon a post-op room finally opened up and we were able to transfer out of the emergency area to the 7th floor where she stayed for the next week. During this time, the pain team physicians determined that the epidural infusion was not effective so it was halted. A continuous infusion of Dilaudid was prescribed. The IV dose was calculated by the anesthesiologist based on her epidural rate and the order was sent to the pharmacy. When the pharmacist received the order, he refused to prepare it. Under normal circumstances the concentration of the solution contained a lethal amount of drug; however, these weren’t “normal circumstances”. The anesthesiologist had to go to the pharmacy and assure the pharmacist that the prescribed dose was correct and in Robyn’s case, a necessary amount. Even this amount of medication was not able to bring Robyn’s pain down to her tolerable level of 5-6 on the pain scale. In addition to the Dilaudid, Robyn was also placed on a PCA Fentanyl pump with additional bolus doses for break through pain. Enough medication to put down a horse and still Rob was having pain she rated as 9 .

The anesthesiologist discussed pain management options; one was an intrathecal catheter and an implantable pump. A major risk with this type of treatment is infection. Robyn was at an even greater risk because she still had an epidural catheter as well. The intrathecal catheter is a small tube placed within the spinal canal, connected to an internal pump which is implanted in the fatty area of the abdomen or buttocks. The pump could be programmed to regularly deliver a solution of Dilaudid and local anesthetic. She recommended a temporary trial catheter for a couple of days to determine if it would be successful treatment before placing a permanent one. The trial was especially necessary since the epidural catheter had not worked well. Robyn was ready to try anything at this point. The two day trial was successful and the MRIs and scans were finally done. Friday June 12th the temporary catheter was discontinued and we went home for the weekend. Our next appointment was for Wednesday June 17 to get the scan results.

The pain returned with a vengeance on Saturday and although Rob was scheduled to get the permanent spinal catheter in another week, we just couldn't wait until then. A call was made to Dr. K who was able to move Robyn's surgery up to Wednesday June 17th. So, Tuesday afternoon we headed for Houston....again. We had to cancel the appointment with clinical trial reseach doctor. We were told that getting pain control was first priority then we would discuss the test results and other treatment options.

Robyn's surgery was done early Wednesday morning. The epidural catheter was removed first under local anesthetic and sedation. Then Rob had general anesthesia and the spinal catheter was inserted and the infusion pump implanted. Everything went well and although she had incisions in her back and abdomen, her only complaints were of the chronic, persistent left back, hip, and leg pain. This was expected because the spinal medication had to be increased in small increments for safety reasons. Robyn did well Wednesday night and Thursday. Friday we went to the Pain Clinic for a pump rate adjustment. When her vital signs were taken we learned that Rob had a slight fever and since she was on steroid drugs even a low grade fever was cause for concern. Dr. K ordered a complete blood count to rule out infection and we left for the hotel where we had planned to stay for the next few days while the pump was being adjusted.

Dr. K called on Friday afternoon to tell us that Robyn needed to go to the Emergency Room and be admitted into the hospital. Her white blood cell count was 16,000, an increase of over 10,000, and her platelet count had dropped from 170,000 to 16,000 in the two days since surgery. Shortly after our arrival, Robyn began vomiting, had a severe headache, and was very sensitive to light. A grueling 12 hour E.R. wait stimulated another pain crisis before she was finally admitted. Platelet transfusions and four very powerful I.V. antibiotics were started almost immediately while doctors began to investigate the cause of these complications. For three days there were constant visits from doctors specializing in oncology, hematology, infectious disease, pain management, and neurology. The preliminary diagnoses were possible meningitis and disseminated intravascular coagulation also called D.I.C. (a very serious blood clotting disorder). Luckily these diagnoses were ruled out. It was determined that Robyn had arachnoiditis, an inflammation of one of the membranes covering the spinal cord and brain and immunological thrombocytopenia, a low platelet count caused by a drug-blood complication. The medications which were most likely to have caused this problem were discontinued. Unfortunately, one of these medications was Methadone, an oral drug she was now taking for the chronic pain.

This brings me to the present. Although we have not gotten the official results of the scans, we have learned that the disease has progressed. The good news is that Robyn may qualify for yet another drug trial but first we have to get all these other problems resolved. The platelet count is slowly increasing. It has been holding at 58,000 and the WBC count is slowly declining; it is now 12,000. The antibiotic infusions have been reduced from four to two.

Things should be looking up, right? Wrong, they are not. Monday and Tuesday nights Robyn began to experience major pain flare ups again and the medications don’t seem to be helping very much. What does she say about all this? She says, “I just can’t catch a break for nothing”. She’s right. We need your help as we pray that Robyn can have a well-deserved break. All she wants is enough comfort to get a good night’s sleep. That’s not too much to ask for. Tonight as Steve and I sit by her bed, we thank God that we can be here for her and we pray for her comfort. We also thank God for your continued support of Robyn and our family and we pray that all is well with you and yours. God Bless You.

Wednesday, May 13, 2009 10:30 PM CDT

Monday, May 4, Robyn saw Dr. Naing, her clinical research physician. He walked into the exam room with the latest PET scan report in hand. This scan was done after Rob had taken two weekly doses of the trial drug called IMC-A12 2007-0595. We were very anxious to see how this most recent scan compared to the pre-drug trial scan. Before Dr. Naing handed over the report, he cautioned us about its contents. He said that we should keep an open mind when we read the results and remember that this scan had been done after two weeks of treatment with only one of the trial drugs. Like us, he too had hoped for good results, however good results were more likely when the trial drug was given in combination with a second drug called Temsirolimus. He ended by telling us that the PET report indicated disease progression and asked that we “try not to get discouraged by these results.” I thought about it for a moment then pulled my hand away. Why would I want to read discouraging words when this test had been done before Rob had gotten the complete treatment? I told Dr. Naing that I was no longer interested in seeing the report. I then asked Robyn if she wanted to see it, “Nah.” She said, “I’ll pass too.” Robyn told Dr. Naing about the weakness she was having in her pelvis and left leg. She wondered if the weakness and pain could possibly be a good sign and the result of the drug reducing the tumor size, leaving damaged bone behind? Dr. Naing said that this could be a possibility but we would have to wait for the next test results to know for sure.

Tonight we returned home after Robyn completed day one of her second cycle of treatment. Each cycle consists of three weekly treatments so this is actually the 4th week of getting both drugs. All the scans will be repeated after the completion of cycle two, which will be at the end of the month. After her treatment last night, Robyn had intense nerve pain and its location varied from one moment to the next. We had a very difficult time getting it under control and her pelvis and left leg were left feeling very weak. During these pain episodes Robyn rated her pain a nine, on a pain scale of 0 to 10, ten being the worst pain ever. Rob says she will NEVER give pain a 10 score because that would give the pain too much power. We hope that this new and different type of pain Robyn has been having is the result of effective treatment. Knowing for sure, however would certainly make these episodes more tolerable for her to endure.

Wednesday, April 22, 2009 11:03 AM CDT

Yesterday Robyn had her third chemo treatment and this time she received both of the investigational drugs. The drug she received on weeks one and two deprived the cancer cells of sugar. The hope is that without sugar for its fuel, the tumor will starve and eventually die. The second drug, the one Rob got for the first time yesterday, interrupts communication between the cancer cells and prevents replication which in theory, will keep it from growing. We’re praying that this one-two punch method of treatment will knock-out the disease.

Yesterday afternoon, as soon as the infusions were complete, it was evident that something was indeed happening. Robyn began to experience a different kind of pain; severe pain in her left thigh which she described as “bone pain deep in my femur”. This pain continued down to her lower leg. Her left leg and pelvis were so weak that she could not support her own weight, which has dramatically decreased since her soccer days. This is how Rob described the weakness, “my pelvis and femur feel as if they are made of plastic and the plastic is bending”. Together we were able to get her situated in the vehicle and by the time I had returned from dropping off the wheelchair, Rob’s entire left leg was radiating heat, the right leg temperature was normal. I think the tumor was very angry!

Throughout the day we had conversation that helped us focus on something other than chemotherapy. Yesterday was Finley’s second birthday. Finley is Robyn’s niece and our only grandchild. All day long Finley was on our minds, in our hearts, and on our lips as we spoke of her throughout the day. Happy Birthday Finley! We love you!

Christine Haman Luke came by the hotel to visit. She spent the night here and I was able to get a good night’s sleep. Today I’m letting Rob sleep in, fighting tumors is hard work and she needs her rest. If Robyn is feeling up to it, we plan to visit Ricky and Marion Gilbert, who Rob fondly calls “the cousins”. A dose of Ricky’s wit is just the medicine Robyn needs as she gets some well deserved rest. Tomorrow it’s back to M.D. A. for lab work and if all is well, we’ll head back home until next week. We are hopeful that this is the effective treatment we’ve been waiting for and that Robyn will be part of history as the cure for Ewing’s sarcoma is finally discovered! God bless you all.

Wednesday, April 8, 2009 3:11 PM CDT

Robyn reported to the lab at M.D.A. Thursday morning 4-2-09 for an EKG and a multitude of blood tests required for the drug trial. A second research person met us at the lab to ask Robyn if she would help them out with another study. This study involves genetic research and probably would not benefit Robyn directly although it may benefit others. It would require her donation of additional tissues and blood. She agreed and signed another mountain of paperwork. Thursday afternoon we checked in for Rob's bone biopsy. Part of the admission procedure involved taking her vital signs; Rob's B/P was 86/52. The biopsy was cancelled and she was sent to the Anesthesia Dept. for a workup. Thursday afternoon we went to the nuclear medicine department for the PET scan. By this time, Robyn was having increased pain in her back and left hip so she used the medication prescribed for breakthrough pain. The med is Fentyl in a lollipop form which unfortunately has sugar in it. Consequently the PET scan had to be rescheduled and luckily it could be done the very next day. The biopsy was rescheduled for Monday so we left late Friday evening for a weekend at home.

Sunday 4-5-09 we were back on the road again because Robyn had to report for her biopsy at 7:30 Monday morning. The procedure took about 45 minutes but I was left waiting in the lobby for 1 ½ hours. I went to the desk and asked if they could please check on Rob's status and was told, "Don't worry; someone will come get you as soon as she gets to the recovery room". Needless to say, my mind was racing with the "what ifs". Robyn said she kept wondering "where's mama"? each time she woke up. She said she wasn't sure if she was thinking it or saying it out loud. The recovery room nurse had forgotten to come get me and was very apologetic when she realized it. I was just relieved that everything had gone well. We met with Dr. Naing, the doctor heading the research study. He was very personable and thanked Robyn for her participation in this and the additional research studies. He brought up the PET scan images on his computer and we were able to see the disease activity throughout her left pelvis. No wonder her pain level has increased so dramatically. Dr. Naing told us that Rob had been randomly placed in the research group receiving one of the two research drugs. Of course we were hoping that she would be in the group receiving both drugs and eventually she will but not until the third week of treatment. Dr. Naing said that a couple of the participants have shown improvement even with only the single drug that Rob is getting, that was encouraging. David was in Houston today for business and came by to visit. Robyn was very happy to see her brother.

Tuesday 4-7-08 started with a visit to the lab where someone from the research team met Robyn and took her straight to the back without any waiting. There they took 13 tubes of her blood and several of these were quite large. Robyn joking said that at this rate she will need transfusions before too long! The chemotherapy treatment began at 4:00 and was finished at 8:00. Christine Haman Luke (or as Robyn calls her Hey Man) came for a visit during the chemo and that helped the time go by. She also brought Chik-fil-a and Robyn ate almost every bite. The treatment was uneventful and there were no side-effects; we were very grateful for that. However, a couple of hours later, Robyn began having excruciating pain in the tumor area. It took awhile for her medication to provide enough relief for her to be able to sleep. Apparently, the tumor doesn't like this drug. We'll find out soon because tomorrow 4-9-09 Rob will have another PET scan. The research team recommends that participants remain in the medical center area, the first couple of weeks of treatment; however they left the final decision to Rob. That's all she needed to hear, she plans to head home as soon as they complete the PET scan so she can enjoy Easter with the family. I'm just the driver and will do whatever she chooses.

Sorry this entry is so long, so much has happened this week. We wish each of you a very Happy Easter and as always you will be in our prayers.

**3-29-09 UPDATE BELOW****3-20-09 UPDATE BELOW**Tuesday, March 17, 2009 12:56 AM CDT

Our Reno/Lake Tahoe trip was wonderful! It wasnï¿½t until o
ur last day there that the weather cooperated for us to take a snowmobile mountain tour. Thank God that it did because it was the highlight of our trip. My brother Geno rode behind Robyn and Sally, my sister-in-law, rode behind me. It was a bit too ï¿½tameï¿½ for Robyn so we threw in a bit of racing
for excitement. Both Sally and Geno said they enjoyed the adventure but when we asked if they would do it again, they both answered ï¿½Never.ï¿½ (Iï¿½m not sure if they meant they would never again ride a snowmobile or if they would never again ride with me or Robyn; I suspect the latter).

We could tell by Dr. Benjaminï¿½s solemn demeanor when he entered the exam room last Thursday that Robynï¿½s test results werenï¿½t good. The MRI of the pelvis showed that the primary tumor in Robï¿½s left pelvis has again raised its ugly head. The most recent chemotherapy drug Rob has gotten, Doxil, is no longer holding the disease at bay. Ordinarily, the next course of action would be to switch to one of the other conventional chemotherapy drugs that had worked before, like Ifosfamide, Etoposide, or Irinotecan. Unfortunately, blood tests indicate that Robynï¿½s bone marrow is too suppressed to tolerate any of those drugs, at least for now. Another possible option, is participation in another drug trial. It would involve the same drug Robyn had gotten in January 2008 but this time in combination with a second drug. Dr. Benjamin plans to speak with the research doctor and present her case to the team this week. Hopefully she will meet the eligibility criteria to participate in the trials at least until her bone marrow has time to recover. In the meantime, the Oncologist in Baton Rouge will supply some of Robynï¿½s lab reports to M.D.A.C.C. and will regularly monitor her blood counts. It is very difficult to just wait when we know how destructive the tumors can be. So we decided its time to visit Dr. Shu again. Our hope is that acupuncture can help stimulate her bone marrow. We donï¿½t know which option would be best for Robyn, the trial drugs or conventional chemotherapy. We are praying, and with very humble hearts ask you to also pray, that through Godï¿½s divine intervention, Robynï¿½s medical care is directed toward the most beneficial route as soon as possible. With love and appreciation, Connie

3-20-09

Robyn has received a phone call from the Clinical Trial Research Department. She has an appointment with the doctor who heads the team next Wednesday, March 25. The interview and examination process will begin to see if she is eligible to receive the trial drugs. She was told to be prepared to stay for a week. Weï¿½re extremely grateful for this chance. Oh, the awesome power of prayers! Thank you all so very much.

**3-29-09 UPDATE**
Robyn met with the research doctor on Wednesday. Steve went with her for the interview because I was too sick to make the trip. I had a bad case of food poisoning and was more ill than Iâ€™ve been in many years. The discomforts of the illness did not compare to the pain of my heartache; I was missing a crucial appointment. I stayed in close phone contact and everything went well. Robyn got through the first part of the drug trial procedure with flying colors. Part II will be on Thursday when she returns for a complete physical exam and more diagnostic tests. Friday she will have a bone biopsy. If all goes well, Rob will begin receiving treatment on Monday, April 6. Please keep Robyn in your prayers. I know, with all my heart, that it is through the power of your prayers, she has been given this chance. God Bless You All!

Sunday, February 1, 2009 8:36 PM CST

We had a really nice holiday season and as the New Year began, Robyn started to feel better and better. As she continued to improve, I began to consider going back to work. Arrangements were made for me to return to my job and still be able to take time off when Robyn had chemotherapy. Next thing I know, Robyn too decided to try to return to work. I returned on Monday, January 12 and Rob was on the job Tuesday the 13th. She has since been able to work about two days each week. We just can’t believe her resilience and although she’s had some difficult days with her skin and joints, it hasn't slowed her down much.

On my first day at work, I received a phone call from my brother Geno. He had a surprise for me and Robyn. He had made arrangements to take us to Reno and Lake Tahoe, for an all expense paid vacation. I had a surprise for him, too; it was my first day back at work. My brother thought I had decided to retire and although he considered taking only Robyn, he was very reluctant about traveling without “her private nurse.” My Chancellor, assistant Dean, and supervisor were all very understanding and supportive. Without hesitation they said that I should go. Tonight I’m busy packing. We’re leaving on Wednesday and have been busy planning our activities. Rob would like to take a snowmobile tour so we’ll try our best to make it happen. What a fun little excursion before begining the next round of chemo on the 10th. I wonder what Dr. Benjamin at M.D. Anderson will say about of all this when we see him in March!

Friday, December 19, 2008 0:02 AM CST

It’s late and I’m tired. We just returned home from Houston. The traffic was horrendous and I have a headache but I just couldn’t go to sleep without first sharing our good news. Robyn had two CT scans yesterday, one of the chest and one to evaluate heart function. The Doxil chemotherapy she gets every four weeks is toxic to the heart and a cardiac scan was done to see if the drug was damaging hers. When and if that happens, she will no longer be able to receive it. The test measured the percentage of blood the left ventricle ejects with each contraction. The normal range is 55 - 70 percent and Rob’s percentage was 62. Fortunately, she can continue getting the Doxil for at least two more rounds. Another side effect of Doxil is sloughing of the skin. First the skin takes on a tanned appearance then it begins to peel and shed. This is becoming a worsening problem. So, to allow more time for healing between each treatment, Dr. Benjamin has increased the interval between each round of chemo from every four weeks to five. YEA!!!

The CT scan of the chest was ordered to evaluate the condition of Robyn’s lungs. If you recall, something abnormal began to show up in her lungs about three months ago. The November chest scan showed areas of improvement and areas of worsening. Today’s results indicate resolving pneumonia. It seems that the antibiotics prescribed for the infected central IV line was also an effective treatment for the pneumonia in her lungs. This is not a coincidence, it’s what I call a ‘God incidence’.

Well, I have two special Christmas wishes this year. Neither are gifts that can be purchased. One wish has been granted today and I will continue to pray for the other. My Christmas wish for each of you is for beautiful memories of this holiday season. We all spend way too much time shopping for the perfect gifts for the ones we love when what we all remember and cherish most, are the memories of the time we spend together. My Christmas prayers for you will be for peace, joy, health, safety, and memories that you and your loved ones will treasure for a lifetime. A Very Merry Christmas to each of you.

Friday, November 21, 2008 2:30 PM CST

The only word I can think of to describe November is "turbulent". Monday, November 3, Robyn’s hemoglobin and hematocrit values dropped to transfusion levels. She was feeling all right and hoped the Procrit injection would take care of the problem but it didn’t. By Thursday, November 6, Rob was feeling extremely fatigued, dizzy, was short of breath, and having palpitations so she was admitted into the hospital for transfusions. She received two units of blood then both IV ports were flushed and she went home.

Sunday, November 10, I did a routine IV dressing change. I tried to flush the ports but one would not flush. We tried all the usual troubleshooting techniques but to no avail. Monday, November 10, a declotting procedure was ordered to open the line. That evening Robyn began to have chills and ran a 102° fever. Tuesday she was back at the medical office for blood cultures from both IV lines and a new prescription of Avelox antibiotics.

Wednesday November 12, the blood cultures were positive for staphylococcus bacterial infection and Robyn was hospitalized to get IV Vancomycin, a strong antibiotic. The antibiotic was given through her central IV lines in hopes of saving the catheter for future use. Thursday she began having horrendous diarrhea and while getting her third dose of Vancomycin, began to itch. The doctor gave her Benadryl and reduced the infusion rate to help control the itching. The diarrhea caused her potassium level to drop and supplemental IV Potassium was ordered to replace it. Thursday evening, Rob spiked another 102° fever so her doctor felt it was time to remove the source of infection, the IV catheter. An IV was started in her arm Friday morning and the Vancomycin was replaced by another very strong antibiotic, Cubicin. Although, several medications were administered to control the diarrhea, it continued and she had to get another dose of IV potassium. This time it was infused through an arm vein which was very painful. We had to keep cold compresses on the area so that she could tolerate the infusion.

Friday November 14, the Radiologist who inserted the Groshong catheter, removed it. He used local anesthetic but because there was so much scar tissue around the catheter, he had to do lots of cutting and dissecting to finally get the catheter out. Needless to say, it was another uncomfortable day. To add insult to injury, because Robyn was in the hospital, she wasn't able to attend her Godchild's birth, something she had been looking forward to with great anticipation. Mom Jamie and baby Jaden Gayle were both fine and that was the most important thing. Jamie called that evening to give us all the details and it was the next best thing to being there. Since Robyn didn't run a fever Friday or Saturday, she was discharged on Sunday, November 16 with instructions to continue taking Keflex, an oral antibiotic, for an additional 10 days.

Tuesday, November 18, we traveled to Houston. The barrage of tests and appointments began at 3:45 p.m. For the next 48 hours, Rob had blood tests, two x-rays, three MRIs, one CAT scan, a Bone Scan, and two doctor appointments. Thursday afternoon, the results were in. All tumors are stable and there are changes in her lungs. During previous tests, Dr. Benjamin told us that there was an abnormality in her lungs. He suspected an infection of some kind. These latest tests show improvement in some areas and worsening in others.

Thank God November is almost over! The new plan of action, is for Rob to finish the prescribed Keflex antibiotic and hope that it will help resolve the lung infection. Rob will get a short break for Thanksgiving. The week following Thanksgiving, another central line will have to be inserted so that Chemotherapy can resume. Dr. Benjamin wants Rob go back to Houston two weeks after her next Doxil chemo for a follow-up CT scan of her lungs. The results of that scan will determine the next course of action. In the meantime, Rob plans to enjoy the Thanksgiving holiday break and time with her little namesake, Jaden Gayle. We will gather with thankful hearts, happy to be home for the holiday. Our very best wishes to you and yours for a very Happy and Blessed Thanksgiving Holiday! Love, Connie

Wednesday, November 5, 2008 11:45 AM CST

Robyn just completed two more rounds of chemotherapy. This last treatment was on October 20; it wiped out her blood cells. Her hemoglobin on Monday was 8.2 and qualifies her for blood transfusions. Rob is hoping that the Procrit injection she took yesterday will take care of the problem so that she doesn’t need to get blood.

We will be going to M.D.Anderson November 18 and will be there for three days of tests before we get the results from Dr. Benjamin. In the meantime, we are addressing each problem as they arise, which mostly includes pain, nausea and vomiting, and fatigue. The last two months, neck pain and stiffness have become a huge problem and we can almost predict when it will start. Twice now, it begins about 10 days after chemo and persists for about a week. The discomfort is so debilitating that Robyn can hardly get out of bed when it starts. During her September chemo treatment, I was watching ABC news. They did a story about the benefits of acupuncture treatments for cancer patients. I went to their website and read more about it. I then clicked onto a link to find an acupuncturist ‘near you’. I made a phone call to one acupuncturist who informed me that she was also a Registered Nurse. She told me that she was currently working as a nurse and asked if she could make a recommendation. Well, what could be better than an Acupuncturist referral from an Acupuncturist? She recommended the Natural Therapies Center in Baton Rouge. Robyn sees Dr. Shua Hua who has truly been a Godsend. I wouldn’t have believed it had I not seen it with my own eyes. Dr. Shu treats her pain and the side-effects of the chemo so that she can better tolerate her treatments. He said Eastern medicine will treat her body so that she can better tolerate Western medicine’s treatment of her cancer. I have seen him relieve hip, pelvic, and neck pain, vomiting, and fatigue within minutes. Unfortunately, the treatments are painful. It seems that the needles addressing her most severe problems also bring her the most discomfort. I’ve seen tears roll down the sides of her cheeks during the treatment, which is something I’ve rarely observed. I don’t know what upset her most, the pain or that it brought tears to her eyes. She told Dr. Shu she felt like a wus. Can you imagine??? Robyn a wus–no way. She is one of the strongest people I know. The very next visit, we overheard a grown man wailing in the room next door. We couldn’t help ourselves from chuckling a bit. (I'll ask Rob to post her acupuncture pictures).

Tomorrow Robyn is scheduled for an ultrasound of her right neck. The area around her central venous catheter (CVC) is slightly swollen and very sensitive to touch. She is not sure if the sensitivity is secondary to neck pain and stiffness she has been having or if it is in some way related to the catheter itself. Dr. McCanless, in Baton Rouge, feels that the line needs to be checked out. Hopefully it is okay and not kinked or infected.

Robyn’s cousin Jamie is expecting a baby girl soon. She has asked Robyn to be the Godmother which has touched Rob’s heart deeply. Jamie and Jason have chosen to name her Jaden Gayle (after Robyn) Mouton. We’re hoping we get to meet Robyn’s little namesake before we leave for Houston. With Thanksgiving quickly approaching, we have so much to be grateful for. Most especially your prayers which we know have been heard. Please keep praying for successful treatment and good test results. With sincere appreciation, Connie

Thursday, September 25, 2008 10:05 AM CDT

Hurricane Ike hit Houston the Saturday before Robyn’s appointments. Traveling to and through Houston on Tuesday was very eerie. We were in the mist of a huge power recovery convoy to get there and then when we got to the medical area, it felt like a ghost town. We were fortunate, our hotel had a generator, some didn’t. Luckily I had packed some breakfast foods and snacks because the local grocery markets and restaurants were closed. There was a silver lining, however, many patients cancelled their appointments and that made Robyn’s wait for her tests and scans much shorter. David surprised Robyn by showing up at the hotel Wednesday night. Once the shock wore off, she popped out of bed and was dancing around the room in her happiness to see him. In spite of being up most of the night, the two of them were up at 6:00 for her last MRI appointment. Rob had another nice surprise when Christine “Hey-man” came by to visit Thursday morning. Later, the five of us packed into the exam room as we waited to see Dr. Benjamin. Usually, Tami, Dr. Benjamin’s P.A. (Physician’s Assistant) comes in and begins a physical assessment, then she is seen by Dr. B. This time Robyn was seen by another oncologist who was practicing with Dr. Benjamin. I wish I could remember his name. He was excellent, very thorough and professional and yet still very approachable. He asked a lot of questions, which was very concerning until he briefed us on the tests’ results. All of the bone studies, the MRIs, CT and bone scans showed stable disease, and in some areas there was even slight improvement. That brought a collective sigh of relief. Then we learned the reason for all the questions. In July there were changes in Robyn’s lung. These changes are still present and are now more diffuse. Although both doctors do not know the cause, they don’t think it is lung metastasis. Ewing’s is a very solid type of tumor, what they see on the scans has a fine, feathery-like structure which is more suggestive of inflammation. There were lots of questions about her lung functions, Does she have a cough? Any shortness of breath? Was she coughing up anything and if so what was the color? Any chest pain with deep breaths? On and on. Like I said, he was very thorough. We asked if pets could be a cause and the doctor said, “absolutely.” We informed him of the pets in Rob’s apartment, multiple cats and ferrets. Well, as the doctor said, “that opens up a whole new can of worms.” After observing Robyn’s very unhappy facial expression at the very suggestion that her beloved pets could be a problem, he ended with, “let’s wait and see.” As the new doctor explained to Rob, because of her treatment with chemo drugs, her immune system is compromised. Normal day to day exposed to environmental bacteria, fungi, mold, and viruses is more of a problem for her. Dr. Benjamin then joined us. He feels that a wait and see approach would be best. So, the plan is to continue with another two rounds of Doxil chemotherapy and repeat all the tests in eight weeks. If the lung condition persists or worsens, more tests may be ordered to determine the cause and its treatment. Until then, we are most grateful that the chemotherapy is working!

P.S. Please say a little prayer for Jimmy Klatter who is fighting for his life. Jimmy is the brother of Robyn's friend and former teammate, Laura, who sustained a severe head injury this past spring. Thanks.

Thursday, August 28, 2008 10:14 AM CDT

****** NEW PICTURES... FINALLY ******

This week Robyn completed the second of two rounds of Doxil chemotherapy. It is an extended release form of Adriamycin. It was administered on one day but the recuperation period was a week. During that time the discomforts were very similar to what had occurred after her previous treatment and since they were predictable, we were able to manage them better. With this regiment, Rob required only two units of blood and no platelets! During the week long recovery period, I stayed with her in Baton Rouge or she came home to Carencro. The second round began 28 days later. The week before beginning the second round, were the days she felt best so that’s when we made plans.

Our plan to bring Robyn fishing last month was a disaster. If things could go wrong, they did, even before leaving home. Steve loaded the boat, hitched it to the trailer, and connected the tail lights, which didn’t work. After much troubleshooting, he was able to complete a temporary fix, so off we went to meet David and Robyn in Henderson. En route to the levee, the transom support bar broke almost striking the front grill of David’s truck who was traveling behind us. We launched the boat and it started first crank, but not for long, it died out and no matter what Steve and David tried, it wouldn’t fire. So, we implemented Plan B, fishing at a nearby catfish pond. Off we went on a quick 20 minute run to the pond, only to discover that it would be closing in 10 minutes. Onto Plan C, fishing at a local campground, which has private fishing ponds. (This time we call to confirm the closing time). We will have about two hours of fishing time if we hurry. Up until this point we are traveling in three vehicles, Robyn, in her car, was coming from Baton Rouge; David, in his truck, was coming from Shreveport, and we were coming from Carencro. We stopped at Granny’s house to leave Robyn’s car and in our rush Robyn locked her keys and wallet in the vehicle. Leaving all behind, we pile into Steve’s truck and it has a dead battery! We all agree that fishing wouldn’t happen on this day.

This past weekend Robyn finally got her wish for a fishing trip. We visited the Butler’s (my cousin) who lives on Toledo Bend Lake and Robyn got to fish all she wanted. It was great!

September 16 we will travel to Houston for three days of tests and scans. Robyn will see Dr. Benjamin on Thursday to get the results. We hope and pray that these treatments have been effective. Please include Robyn in your prayers as she gets re-evaluated. Those are very anxious days for all of us. God’s love and mine, Connie

Wednesday, July 23, 2008 1:03 PM CDT

Robyn was re-evaluated at M.D. Anderson when after six ½ weeks, her blood cell count had not yet recovered from her latest round of V.I.A. chemotherapy. A baseline bone scan was taken as well as MRI and CT scans of her thoracic spine, shoulder blade, and pelvis. They all showed improvement. A CT scan of her chest was ordered because of recent new pain in the area. That scan revealed a new area but Dr. Benjamin felt it might be infection or inflammation and wasn’t particularly worried at this time; he will, however continue to monitor it. Since her bone marrow was so severely depressed from the V.I.A. chemotherapy, Dr. Benjamin felt it was time to change the treatment plan. He decided on Doxil, an extended release form of Adriamycin, the one Robyn calls “the red devil.” It is a four-hour infusion once every four weeks and can be administered in Baton Rouge. In September, after two rounds of Doxil, we will go back to M.D. Anderson to evaluate the effects of Doxil. Dr. Benjamin also felt that Robyn needed a couple of weeks off of all chemotherapy to let her body rest and recover; she totally agreed with him.

On Monday Robyn saw Dr. McCanless in Baton Rouge. He discussed the new treatment. We learned that a serious side effect of Doxil, is heart damage so he ordered a baseline echocardiogram. This test is an ultrasound of the heart to evaluate its structure and function; it was done Tuesday and was normal so, everything is a go to begin treatment with Doxil on Monday, July 28.

During this recovery “vacation” time, Robyn enjoyed visits from David, Amy, and Finley July 5. We had the traditional Independence Day backyard barbeque. Later that evening, Rob’s cousin Aimee and her son Baylen came over and when it got dark Te’ Taunt lit fireworks for Baylen. It was great fun watching them. Also, during this time, Bennigan’s began sending Robyn work that she can do from home. She says it feels wonderful to be productive again. There were the occasional “sick day” and several medical appointments during this recovery time but for the most part, it was just what Robyn needed to refuel her fighting spirit. Her last goal before resuming chemotherapy is to go fishing. Weather permitting, we will do everything possible to make it happen.

Monday, June 30, 2008 1:11 PM CDT

First I want to apologize for not writing an update sooner. Sometimes writing in the journal is very difficult for me and this has been the case since Robyn’s last round of chemotherapy.

The five days of treatment actually went fairly well with Robyn sleeping through long days of very difficult chemo drug infusions. However, the time since then has been challenging. She continues to have abdominal cramping, nausea and vomiting as with the previous rounds however now it is persisting longer and has become more resistant to treatment. What worked before doesn’t always work now. Also, the drugs have suppressed her bone marrow to a critical level. When her red blood cell count drops, she has trouble breathing. Even short walks leave her breathless and her heart pounding. When her platelet count is low, she begins to hemorrhage and lately has been having spontaneous nosebleeds, some very severe. On one occasion, she had an emergency appointment with an ENT specialist when we were not able to stop the bleeding. The doctor had to cauterize blood vessels in both nostrils to get it under control. Since her last round of chemo, more than a month ago, Rob has gotten six units of red blood cells and six units of platelets. The criterion to begin another round of treatment is a platelet count of 100,000 or more and Friday it was only 20,000. We both fear that her body may be telling her that it has had enough of the Vincristine, Ifosfamide, and Adriamycin chemo regiment. This is a BIG concern since V.I.A. is the treatment of choice. We’ve contacted Dr. Benjamin at M.D.Anderson with our concerns and are awaiting his recommendation.

Robyn stayed with us in Carencro for two weeks after her treatment. She was anxious to get back to her apartment in Baton Rouge, so for the next week and a half I drove there each day. Last Wednesday, David came in from Shreveport and stayed with his sister for a few days. She was so happy to have him with her. She told me “David is good medicine for my heart just like Finley is good medicine for yours.” How true that is. It does wonders for a mother’s aching heart to see the love her children have for one another and to also witness life’s full circle as her “baby” has a baby of his own. It’s been joyful to experience the love and wonder of our first grandchild, Finley. Although Robyn had to get platelets during David’s visit, they did find time to have fun and as Robyn says “get some comic relief.”

Since Robyn’s dose of “David medicine,” she believes she may be feeling well enough to go back to work. She called Bennigan's restaurant and after speaking with a manager is placed on the schedule for a few hours of office work beginning today. So this morning as Robyn is on her way to the lab and then to work, she calls me. As we are talking, Rob suddenly has to pull over onto the shoulder because of a sudden vomiting episode. “Sorry Mom,” she says, “I think my blood count may be low again.” Once the vomiting subsides she gets back onto the road and continues our conversation. All the while, I'm thinking, for some people that’s all it would have taken to call in sick and go back home, but not Robyn. We talk until she pulls into the Bennigans' parking lot, and she tells me, "Bye Ma, I’ll talk to you later. Have a good day.” Robyn is happy as a lark just to be going to work.

P.S. Your donation of blood and platelets has been Robyn’s lifeline. I pray that God Blesses each of you and I ask for special Blessings for those who give the gift of life. We are more grateful than words can ever express.

Thursday, May 22, 2008 10:46 PM CDT

Monday morning we headed out for Houston. The afternoon was filled with diagnostic tests, the most important one, an MRI of the pelvis. Tuesday morning another big test, an MRI of the right upper extremity, the newest area affected with disease. Ordinarily, the patient learns the results of diagnostic tests from their doctor, Robyn said she wanted to know what Dr. Benjamin would be telling her, so before going to her doctor’s appointment, she went to the Patient Information Department and got copies of the test results. So she already knew what Dr. Benjamin was going to say before he walked into the room. He began by saying, “I’ve got good news and bad”. The good news, the tumors are responding favorably to the treatment; all tumor areas tested were smaller. The bad news, her blood cell counts were not taking the treatment very well. Robyn couldn’t stand it any longer and confessed that she had seen the reports and already knew the results. Everyone in the room laughed with Tami, Dr. Benjamin’s Nurse Specialist laughing the loudest because Robyn had “stolen Dr. B’s thunder”. Robyn informed Dr. Benjamin that her tumor pain had improved greatly but unfortunately, she now had another problem, daily headaches. These began shortly after the completion of the second round of chemotherapy and had recently worsened and were often accompanied with vomiting. She was also more sensitive to light. Dr. Benjamin felt that Rob may have developed migraines but could not rule out other more serious causes. One thought was that she could have had some bleeding into her brain because her platelet count had dropped so severely from the chemo drugs. He ordered a cat scan of the brain and it was scheduled for 8:00 p.m. Wednesday night. We didn’t keep that appointment, however because the headache and vomiting worsened so dramatically on Tuesday night, we ended up in the emergency room early Wednesday morning. IV fluids were started and Rob was given IV medication to halt the vomiting. After a thorough exam, the E.R. doctor felt that the episode was the result of a severe migraine headache and ordered an injection of Imitrex; the headache was gone within an hour. The doctor ordered an emergency cat scan of the brain and luckily, that was normal. Before releasing Rob, the E.R. doctor called and spoke with Dr. Benjamin. Although the cat scan was normal, Dr. Benjamin wanted her to get an MRI of the brain before leaving Houston. One is scheduled for tomorrow morning then we can leave for home. Robyn is anxious to get back to Baton Rouge because Stacey Bishop is in town for a few days and she has been looking forward to her visit. Robyn said it’s time for a break so next week she will take a short vacation trip to Atlanta. Looks like I might get a short vacation too.

Thanks so much to Dandydon.com for a very thoughtful message to Robyn on May 20th... The LSU love and support never ceases to touch our hearts... Geaux Tigers

Wednesday, May 14, 2008 10:32 PM CDT

Robyn was finally able to get her second round of chemotherapy. The treatment had to be delayed because her platelet count was too low. It didn’t reach the required 100,000 until Monday, April 28.

Rob was admitted to OLOL in Baton Rouge Tuesday, April 29 the tenth and last day she was a candidate for V.I.A. chemotherapy. A new central catheter was inserted. The catheter is called a Groshong. Its placement required a minor surgical procedure. The radiologist made a small incision called a cut-down to place the line directly into the subclavian vein. The access end of the catheter was then tunneled beneath the skin and brought out onto her right chest wall. Because the procedure was more invasive, it was also more painful. She had limited use of her right arm because of the pain.

We lucked out and were assigned a hospital room that had two beds! I couldn’t believe it! I wouldn’t have to sleep on that dreaded cot! The first night I slept so hard that Robyn couldn’t awaken me when she needed help to go to the bathroom. The next morning she asked me to put the cell phone next to my ear at night so that she could call me if she needed help. So, I decided to move the two beds side-by-side. This way she could just reach over and tap my arm. The staff laughed and said we could do whatever we wanted with the furniture.

The second round of chemo ended on Sunday afternoon. Robyn was still feeling very ill but was able to tough it out so that we could drive back to Carencro where Steve was hosting Finley’s first birthday party. What a delight that was! Finley plunged into her very own miniature cake and got purple icing everywhere. Each time she opened a gift she clapped and cheered “yea.” It was precious.

Since round two finished, Robyn has had to go to the Chronic Care Center for several transfusions of both red blood cells and platelets. Today we got yesterday's CBC results and learned that Rob will need still more blood. She was given the option to go this afternoon or first thing Thursday morning. She opted for Thursday because today she had plans to go to New Orleans to pick up her friends, Rene and Mike who were in from New York. Robyn’s resilience still amazes me.

Monday it’s back to Houston. She will have two days of tests, scans, and x-rays to evaluate the effectiveness of her last two V.I.A. treatments. I’m expecting Dr. Benjamin might change the chemotherapy treatment plan since these two rounds have been so hard on Robyn and her bone marrow. She is not able to produce the blood cells her body needs. So, here I go again, asking for your help. If you, or someone you know, are blood Donars, would you please donate for Robyn? We were told that in order for Robyn to get replacement credit, the Donar must submit her full name, date of birth, and the name of the hospital where she is getting transfusions. This is the information you would need to submit:
Robyn G. (Gayle) DesOrmeaux
January 17, 1982
Our Lady of the Lakes Regional Medical Center-Baton Rouge, LA

We sincerely appreciate all the help, prayers, and support you have given to Robyn and our family. Please continue your prayers for good test results next week and for the doctors who care for Robyn; may God please guide them to successful treatment.

Friday, April 18, 2008 8:30 AM CDT

It’s been a roller coaster ride since my last journal entry. Robyn finished the 5-day “3 Bad Boys" (Vincristine, Ifosfamide, Adriamycin, a.k.a. V.I.A.) drug treatment at M.D. Anderson in Houston on Friday, March 28 and since then all hell has broken loose. From the first day of treatment Robyn said that the chemo “felt much different this time” and that it was “three times worse” than when she’d had it the first time. Shortly after the chemo was started she began to feel ill. Her skin, hair, and breath all smelled burnt. She was very concerned about the odor; I told her it was probably the smell of dead tumor. After the treatment, she felt too ill and weak to serve in Laura Klatter and Justin Hill’s wedding ceremony on Saturday afternoon. She had been looking forward to the wedding with great anticipation, not being able to even attend, much less serve as a bridesmaid, was a huge disappointment.

Saturday night Robyn began having terrible stomach cramps and didn’t sleep that night. By midday Sunday she began to feel better and was able to enjoy a visit with teammates from Florida who were in for the wedding. However during the night the abdominal cramping progressed to severe pain and she began vomiting. We made our way to Our Lady of the Lake Emergency Room early Monday morning. Rob was given IV morphine for pain. The nurse wanted to monitor her oxygen level and asked which finger she preferred to use, in her drugged state she replied “cherry.” After the nurse left the room, Rob asked, “Since when does oxygen come in flavors? How come they’ve never offered me a choice before?” No matter how bad things are, Rob is always good for a laugh. Next the nurse administered IV Phenergan for the vomiting. As soon as the drug was administered, she vomited so the nurse pushed a second dose. Within a couple of minutes Robyn experienced a Phenergan drug reaction. The muscles of her arms, legs, and face began to spasm and her skin was hypersensitive to my touch as I tried to comfort her. Her facial expression looked a lot like her Grandmother’s miniature Chihuahua growling, her teeth showing as if she were about to bite, and I quickly removed my hand (something else we laughed about later). The doctor prescribed IV Benadryl which helped. Robyn later told me that the drug reaction felt as though cold shocks were traveling through her body and although it was extremely annoying and a little scary, it wasn’t painful. An x-ray of her abdomen was negative and once the pain and vomiting were relieved, we were allowed to leave.

I thought we should stay in Baton Rouge to be near the hospital for a while to be sure all was okay before driving back to Carencro. We went to Robyn’s apartment and she fell asleep for a couple of hours until she was awakened by abdominal pain and severe diarrhea. We phoned the doctor on call, who arranged for a direct admit to the Oncology unit and we were again on our way to the Lake.

The nurses were waiting for Robyn in the room when we arrived and immediately started IV fluids and medications. This would be the first of nine nights we would spend in the hospital. During that 9-day stay she received IV fluids, six units of platelets, three units of red blood cells, a run of potassium, and IV antibiotics for an infection of her central venous line. Finally, on April 9 we were able to go home and over the next few days Rob gradually began to feel better.

Saturday Robyn's brother David came in for a visit. That evening he brought Robyn and Skye to Pizza Village in his vintage Bronco truck. They had a great time and came home talking a mile a minute. It was only a half hour later that Robyn showed me a “rash” all over her legs; I recognized it to be petechiae which are pinpoint hemorrhages beneath the skin. So it was back to the emergency room in Baton Rouge for a CBC (complete blood count). Sure enough, her platelets had dropped again, this time to 17,000 which is considered a critical level. She was again admitted to the hospital for platelet transfusions. A follow-up CBC showed that an increase in platelets but a serious drop of her red blood cell count and hemoglobin level. After two blood transfusions, she was discharged and we headed back to Carencro.

This past Tuesday Robyn saw Dr. Benjamin at M.D. Anderson. Another CBC showed that all of her blood counts had dropped again, not to the point of requiring transfusions but too low to begin the second round of V.I.A. chemotherapy. The platelet count needs to be at least 100,000. So now we must wait for her body to make its own platelets. Dr. Benjamin also felt that it would be best to replace the central venous catheter (CVC) because of the earlier line infection. We were told it was going to be a quick and simple 10 minute procedure. They were just going to insert a guide wire through the existing line, remove the old catheter, and insert a new one. Wrong. Although, the nurse practitioner had done this procedure many times, this time she wasn't successful. She was not able to thread the guidewire to the end of the catheter tube. The wire could not be advanced beyond the final turn and kept striking Rob’s collar bone. After multiple attempts with one person pulling on Rob's arm and another pushing against her chest, they aborted the procedure and now she doesn't have venous access for her next round of chemotherapy. For 30 minutes they applied firm pressure and ice packs against the puncture wound on Robyn's chest because her low platelet count put her at high risk for bleeding. A chest x-ray showed that Robyn's right lung had not been accidently punctured and we were allowed to return home.

So, this is where we are now. A new central venous catheter will have to be inserted before her next treatment. If Robyn’s platelet count increases to 100,000 within the next ten days they will proceed with another round of V.I.A. chemotherapy. If it doesn’t, another chemotherapy drug will have to be used. After the second round, MRIs will be done to evaluate the effectiveness of the treatment. Although the treatment has been horrendous on Robyn’s body, I think it is having a good effect against the tumors because the one thing that has improved since Rob began her chemotherapy treatment is her pain level. Her pain is now manageable with the extended release analgesia. She no longer needs additional medication for break through pain. Today Robyn is back in Baton Rouge and in her apartment where she wants to be. I’m home in Carencro with a travel bag packed and ready to make a quick run in case I’m needed. We’re both getting a well-deserved rest until next week when we get to do it all again.

Please continue praying for Robyn’s successful treatment. Would you also please consider donating blood and/or platelets to replace the units Robyn has received and might require later? Blood can be donated at any center or hospital, just give them Robyn’s name and birth date, which is January 17, 1982. As you know, blood is the gift of life and this time it happens to be Robyn’s life. Thank you all so very much!

Wednesday, March 19, 2008 12:15 AM CDT

Dr. Benjamin has decided that Robyn should go back on the V.I.A. chemotherapy treatment-Vincristine, Ifosfamide, and Adriamycin-the three bad boys. It’s a tough treatment plan but as Robyn says, “at least we know what to expect this time.” The venogram showed good circulation in both subclavian veins so Dr. Benjamin was ready to proceed with catheter placement the next day (Wednesday). Treatment was scheduled to follow in the afternoon. Robyn gave this some thought then asked about a deferment until Monday, March 24, the day after Easter. She said it would be nice to be with family for Easter before starting treatment and hoped that we could maybe do a little fishing over the weekend. She also felt that is was better to start the 5-day-treatments on Mondays as opposed to Wednesdays, so that way she would have the weekends off. Dr. Benjamin was okay with the idea. Each time she gets the treatment it is called a round. The 5-days of treatment are followed by two weeks of recovery then the next round begins. We have no idea how many rounds it will take or how many her body will be able to handle. Every 6 weeks they will do scans to assess the effectiveness of the chemo drugs. If these don't work, there are others they can switch to.

This morning I was on the phone making fishing plans. We will be joining my cousin Mary Ann and her husband Floyd Butler and their family at their home on Toledo Bend Lake. We will do some fishing Friday and Saturday. Robyn called her brother, who now lives in Shreveport with his wife Amy and their daughter Finley, to tell him of her plans. He said that they will try to join us for one of the days. Our precious little granddaughter, and Robyn's only niece, is such wonderful medicine for our hearts.

Next weekend Robyn is serving in her friend Laura Klatter’s wedding. The first time she was on this chemotherapy regimen, her blood cell counts began to drop on day 10 . Another benefit of the five day delay, is that Rob may also be feeling well enough to serve in, or at least attend, Laura’s wedding, on Saturday, March 29. It is Laura’s brother Jimmy who had the accident which resulted in a serious head injury. Although Jimmy remains in a drug induced coma, he is holding his own and everyone remains optimistic for his recovery. Our thoughts and prayers continue for Jimmy and all of the Klatter family. His accident reinforces what our family already knows: Live life to the fullest because we do not know what tomorrow will bring. We wish you and your families a very Happy and Blessed Easter!

Thursday, March 13, 2008 5:52 PM CDT

The results came in and we could tell from Dr. Benjamin’s body language that they weren’t good. The MRIs confirmed our fears; the cancer is active again. There is an increase in tumor activity on both sides of Robyn’s pelvis and the small suspicious area in her right shoulder blade definitely is new tumor. So we’re back to square one again. Since Robyn’s disease was no longer responding favorably to the trial drug, her participation in the study has been discontinued. Dr. Benjamin feels it would best to return to conventional Ewing treatment but is not sure which chemotherapy drugs to use. Our first goal will be to recapture and control tumor activity so that will be our focus for now. A venogram is scheduled for Monday to determine if the circulation in both the right and left subclavian veins is adequate enough for catheter placement. If it is, another central line will be placed so that the chemotherapy infusions can begin on Tuesday. The drugs will be administered at MDACC for at least the first two weeks and we will have to stay near the hospital. If all goes well and the tumor responds favorably Rob might be able to get the remainder of her treatments in Baton Rouge. Tomorrow we will attend a healing mass with Fr. Manny in Berwick, LA. We will pray that through the intercession of our Lord, Dr. Benjamin will make a good treatment choice and that treatment will be successful. We will also be praying for a friend from Chicago, Jimmy Klatter who sustained a head injury this past weekend and is in a coma. We hope you will continue to include Robyn in your prayers and ask that you please add Jimmy to your list.

Thursday, March 13, 2008 5:52 PM CDT

The results came in and we could tell from Dr. Benjamin’s body language that they weren’t good. The MRIs confirmed our fears; the cancer is active again. There is an increase in tumor activity on both sides of Robyn’s pelvis and the small suspicious area in her right shoulder blade definitely is new tumor. So we’re back to square one again. Since Robyn’s disease was no longer responding favorably to the trial drug, her participation in the study has been discontinued. Dr. Benjamin feels it would best to return to conventional Ewing treatment but is not sure which chemotherapy drugs to use. Our first goal will be to recapture and control tumor activity so that will be our focus for now. A venogram is scheduled for Monday to determine if the circulation in both the right and left subclavian veins is adequate enough for catheter placement. If so, another central line will be placed so that the chemotherapy infusions can begin on Tuesday. The drugs will be administered at MDACC for the first two weeks and we will have to stay near the hospital. If all goes well and the tumor responds favorably Rob might be able to get the remainder of her treatments in Baton Rouge. Tomorrow we will attend a healing mass with Fr. Manny in Berwick, LA. We will pray that through the intercession our Lord, Dr. Benjamin will make a good treatment choice and that treatment will be successful. We will also be praying for a friend from Chicago, Jimmy Klatter who sustained a head injury this past weekend and is in a coma. We hope you will continue to include Robyn in your prayers and ask that you please add Jimmy to your list.

Friday, March 7, 2008 1:59 PM CST

I need to clarify the PET scan results I reported in my last journal entry. I said the tumor size was reduced when actually there was a reduction in tumor “activity” and not size. In either case, the results were positive. A 6-week follow-up scan was done Monday. We were very concerned when after the scan, Robyn had difficulty walking and a tremendous increase in pain. We both figured it was from having to lie flat on the hard examination table for an hour because just this past weekend, Robyn felt well enough to work a few hours on Saturday and Sunday. However, things got even worse on Tuesday and Robyn was back in a wheelchair when we left for MDA early in the morning for her weekly appointment with Dr. Benjamin. It was then we got the most recent PET scan results. There is an increase in pelvic tumor activity and a new “suspicious” area on Rob’s right shoulder blade. Things continued going south when by her second appointment of the morning, she started running fever. Not just a slight temperature elevation but an unrelenting fever between 102 and 103 degrees. Dr. Benjamin was notified and ordered blood cultures to see if Rob might have a systemic infection. He then decided she should get her 6th treatment of the Phase II trial drug, so she did. The last appointment of the day was at 8:00 p.m. for an MRI of the pelvis. The MRI will help Dr. Benjamin have a better picture of what’s going on in Rob’s pelvis and will be better able to determine the next course of action. We finally left the center after a grueling 12 hours of appointments, tests, and treatment.

We had planned to leave for home after the MRI but I was so very concerned about the fever I thought it was best for us to stay overnight. Robyn’s fever continued throughout the night and next day. I called the Research Nurse to see what we should do. Medication was prescribed for the fever and a urine analysis was ordered to rule out a urinary tract infection. With all of this done, Dr. Benjamin felt that it would be okay for us to go home. We were in route less than 30 minutes and had already made three stops with Robyn vomiting each time. I was ready to turn back but Rob wasn’t, “Let’s just get home; I’ll be okay.” So we continued. It was one of our longest trips home, with us having to make an additional three more stops, the last being way past dark. Robyn was asleep when after just passing a well-lighted busy exit she suddenly awakened and with urgency in her voice reported the need of a restroom “NOW.” I asked if she could wait until the next exit which was 10 miles off. “No way, Ma, just pull over.” Just then an exit came into view and I hurriedly turned onto a very dark road which lead to the one and only business establishment-an adult entertainment store. I knew she was in a bind when she said “Fine, I gotta go and this will have to do.” "Get me my wallet, Mom". "Your wallet? Why do you need your wallet?" I'm thinking she needs money, right? Wrong. "Mom, I need my ID to show my age". We had a very hearty laugh about this the rest of the way home.

We will be back in Houston on Monday. An MRI will be done on her right shoulder to see what’s going on in that new area of activity. On Tuesday she will see Dr. Benjamin and get the results of both the pelvic and shoulder MRIs. In the meantime we remain optimistic. The phase II drug is in a class called antibodies. The fever may be an overwhelming immune response since fever is one of the ways the body fights infection and disease. We know this tumor will not surrender quietly and we also know that neither will Robyn. Please keep her in your prayers as we await these results.

Friday, February 8, 2008 8:23 AM CST

On Sunday our excitement over last week’s improvement faded. Robyn had been having some numbness, tingling, and loss of sensation in her left arm for almost two weeks. She told Dr. Benjamin about it when he saw her before begining the new treatment. I think we both wanted to believe that it was from her restricted position when we traveled to and from Houston. This past Sunday it worsened and we knew there had to be some tumor connection. That was confirmed on Tuesday when we received the results of the first PET scan. It showed an active tumor at the level of her 6th cervical vertebra as well as in the pelvis. Radiation of the thoracic tumor last November was successful and the scan showed scarred tissue in that area. This week Robyn received her second round of chemotherapy on Tuesday and had another PET scan on Wednesday. The scans are part of the research protocol. In many cases, there is observable improvement as early as the second treatment. We haven’t gotten those results yet. Robyn is in pain most of the time. Before the pain was in the left hip, now it is in the neck, left shoulder, and arm. To alleviate this new pain she must lay on her left side. When she lies on her left side too long, it makes her hip hurt. If she didn’t have to lie on her left side, the hip would feel fine. What a vicious cycle! Robyn continues to remain optimistic and this is her interpretation of what is happening: Just prior to her chemotherapy treatments she had episodes where she could not even feel her left arm. Feeling pain must be an indication of nervous system function therefore must be better than having no feeling at all. I feel that the drug was effective in the pelvis and it will just take more time to have the same effect in the cervical area. We continue to pray and are very hopeful. Your continued prayers would be deeply appreciated.

UPDATE....UPDATE....UPDATE....UPDATE....1:00 p.m.....UPDATE

We just received a call from the Research Nurse regarding this week's PET scan results and they were good. There is a 45 percent reduction in the size of the pelvic tumor and a 33 percent reduction of the cervical tumor! We asked, Joanne, the nurse, why Robyn was having so much neck, shoulder, and arm pain. Joanne had no idea but did report that all patients who had improvement of their disease with the experimental drug also had increased pain. She also said that when there is a change in tumor activity it is often accompanied by an inflammatory response. Robyn feels that we "pissed off the tumor". Although we don't know the cause of this intense pain, knowing there is improvement of the disease sure makes it more bearable (at least for me).

Saturday, February 2, 2008 7:32 PM CST

Robyn had an interview with the Research Nurse on Tuesday. All of the paperwork was completed as the application process for the Phase II drug trial began. She then saw her oncologist for a physical exam and from there went to the lab for blood work. A Pet scan was scheduled for the afternoon. Two of these scans are done; the first to establish a pre-treatment baseline and another after the second dose of the trial drug, the monochromal antibodies. PET stands for positron emission tomography. It is a nuclear scan and x-ray. Radioactive fluid is injected and images of body structures are produced in 3-D. The test also uses glucose to measure metabolic activity of organs. Glucose is the body’s primary fuel. Tumors also need glucose to grow but they metabolizes it much quicker than normal, healthy tissue making them identifiable on the images. The test is particularly helpful in identifying tumor location and determining if it has spread. To have the scan done, the patient must lie on their back and remain very still. This was a big problem because Robyn has been having severe pelvic and hip pain and could not lie on her back or left side. Without the PET, she would be ineligible to get the medication. We contacted her pain management doctor, explained the situation; an analgesic that dissolves in the mouth was prescribed to take care of that problem and it worked beautifully. Chemotherapy was scheduled for 2:00 p.m. on Wednesday. There were several delays and I was on pins and needles. I was so scared that she would not be able to get the new drug. Finally at 5:00, she was called in. Three EKG’s were done, each one minute apart from the other, again to establish a baseline. At long last, an IV was started and the medication began infusing, I felt that a weight had been lifted from my shoulders. After the infusion, three more EKGs were done at one minute intervals. Next Tuesday and Wednesday and every week from now on, she gets to do it all again. We are not complaining because this treatment is our last hope. I know that it is through the miraculous power of your prayers, Robyn has been given this chance. We were told that if the drug is going to work, we would probably see changes on the second PET scan, the one that will be done Wednesday. Today I drove to Baton Rouge to be with Robyn. The change I saw was astounding! Two months ago she needed a cane to walk, three weeks ago she needed the help of a walker, a week ago she required a wheelchair. Today, I saw Robyn walk, ever so gingerly, without the use of an assistive device! Granted it is not her usual gait and with a limp, but she walked on her own power! Today Robyn drove her car for the first time in two weeks! Today Robyn did not have to take extra analgesics for breakthrough pain. Tomorrow Rob is planning to go to Baylen’s 3rd birthday party and he will be so excited to see his "Tee-taunt". Do I believe in the power of prayers.........you bet I do! As I pray to God in gratitude, I also pray for you and yours.

Thursday, January 24, 2008 8:23 AM CST

We have finally received communication regarding Robyn's participation in the phase II pharmaceutical trials. The investigational drug is a Recombinant Human Monoclonal Antibody which, if succesful, will turn off tumor growth. The consent form is a 13 page document and includes lots of information. The possible side-effects are basically the same as those on other consent forms Robyn has gotten. Steve and I will be with her next week when she undergoes pre-trial evaluation tests and her first treatment. The medication is administer by intravenous infusion and if all goes well, she will get her first one Wednesday or Thursday. We hope and pray that this drug will be the answer to our prayers.

Saturday, January 12, 2008 8:32 AM CST

The test results are in, and the findings are mixed. The tumor in the upper back responded well to radiation and there was definite improvement. The suspicious area in the pelvis is now more worrisome. The trip and the multitude of tests took a big toll on Robyn. Her first test was at 1:00 p.m. on Wednesday and she didn’t leave the MRI center until 10:45 that same night. The last two MRIs of the spine were done consecutively without a rest period. Robyn asked the tech to please let her get off the table between each test so that she could move and stretch. He refused, saying it would necessitate resetting the equipment. To make it through the second MRI, Rob had to do breathing exercises. She wasn’t able to walk without assistance and had to sit and stretch before she could leave the room. I don’t know which was worse, the pain she was having or the anger she felt toward the insensitive tech. She was back for the final MRI at 9:30 Thursday morning and that day didn’t end until 6:00 p.m. We now have to play a waiting game. Robyn is a candidate for a second phase clinical trial for a drug that had good phase one results on Ewing’s sarcoma. This is the drug that Dr. Benjamin once referred to as “gang-busters” against Ewings. Unfortunately, F.D.A. approval for phase two clinical trials is about two weeks away. This new drug is tumor-specific and has few side-effects. For the initial treatment, Robyn will have to stay near the medical center for a few days. If all goes well, she will return once a week for the treatments. In the meantime, the pain management physician has changed Rob’s pain medication to one that hopefully will make her more comfortable. We’re also looking into assistive devices to help her stay as active as she wants to be. Rob’s 26th birthday is on Thursday. We hope she will feel up to celebrating in the usual “Robyn style.” For me, two weeks of waiting for treatment seems an eternity. I will have our bags packed, ready to go so, and one foot out the door, so that when we get that much anticipated call, we can be on our way. PLEASE keep praying.

Thursday, December 6, 2007 11:12 PM CST

I ended our last journal entry telling you that Robyn had new and increasing left hip pain. It caused her to adjust her walking gait and was severe enough to necessitate the use of a cane and sometimes even a wheelchair. (I don’t suppose the half mile walk to get to Tiger Stadium for the Arkansas game helped matters either).

Dr. G had ordered a CT scan of the hip to identify the cause. On Wednesday, November 28 we got the results. The radiologist saw subtle changes in the femoral head (the ball part of the ball and socket hip joint) that suggest an early onset of Avascular Necrosis. That means that the bone is not getting circulation and is deteriorating. It is a common reason for total hip replacement surgery. I had been consumed with worry that the Ewing’s had spread to the hip joint. Upon hearing this newest development, Robyn turned to me and said, “Whew, you see Ma, you worried for nothing.” I’d hardly say “for nothing,” since a total hip isn’t nothing. However, in the big scheme of things, I have to agree with Rob, as compared to hip mets, a total hip replacement really is nothing. AVN is a complication of radiation therapy and prolonged steroid use and of course, Robyn has had both.

Dr. G made an appointment for Tuesday, December 4 with Dr. Cannon, an Oncology Orthopedist. Robyn had seen him once before. He entered the exam room declaring that Robyn owed him a debt of gratitude since his alumni, Oklahoma had defeated Missouri, and was the reason LSU had gotten the Championship game bid. Then he got to the matter of the hip. He had studied the results of the CT scan and felt that the hip changes may be the result of radiation exposure. The plan is to monitor for progression or hopefully, improvement. In the meantime, she continues with pain management and assistive devices on an as needed basis.

Tuesday evening Steph (Fordie), Cat (Fordie’s classmate), Christine, Rob, and Jonathan Hebert came by the hotel for a visit. As per Robyn’s request, I made a pot of Cajun chicken and sausage gumbo and potato salad for them. Cooking in a hotel room on a mini stove was quite a challenge. It was a fun evening. Wednesday Robyn had her final radiation treatment. Christine Haman came with us to the radiation center and took pictures as Robyn rang the traditional “home free” bell three times to announce the “end of her radiation journey.”

Robyn’s last appointment with Dr. G followed. The steroids will be gradually tapered down for the next three weeks and she is to get some rest (fat chance of that!) as her body recovers from the effects of radiation. Dr. Benjamin will see Robyn again right after the New Year begins however, Robyn has requested, a slight deferment in hopes of getting tickets to the LSU-Ohio State Championship game.

We’ve decided that we won’t give Ewing’s or M.D. Anderson another thought during this holiday season. We have too many other things we’d prefer to do!

Tuesday, November 27, 2007 9:56 AM CST

We’re back in Houston to continue radiation treatments. Robyn saw the Radiation Oncologist, Dr. G last Wednesday. The appointment went well. As you know, Robyn wanted to skip Friday’s treatment so that she could take advantage of ‘Black Friday’ super sale prices. Ordinarily it is preferred that radiation patients have four treatments each week, however Dr. G felt that a 4-day Thanksgiving weekend would be just as therapeutic as a 4th treatment. Dr. G considered putting Rob on Dexamethasone for inflammation but since she wasn’t having symptoms decided against it. I asked for a prescription in case Rob needed it while we were home but Dr. G wanted us to call instead so that she could keep up with any new developments. Robyn was awakened by severe neck pain and stiffness at 3:00 a.m. Thanksgiving morning and nothing helped. We were not able to reach Dr. G and were given instructions to return to the E.R. Robyn said, “No way, I’ll deal with it”; and she did. The whole family was together, it was great, and my heart was most thankful! Our beautiful granddaughter, Finley was the highlight of the day. She now has two bottom teeth and is crawling. Thursday evening Robyn had a fever and the pain and stiffness continued. The weatherman forecasted rain early Friday morning and I pleaded with Robyn to cancel her shopping plans; finally she gave in. We lit the fireplace, played Scrabble, and watched a movie Thursday night, it was wonderful. Friday morning I got on the phone again and was finally able to get someone to contact Dr. G for us but not before Robyn was on her way to Baton Rouge for the LSU football game. Dr. G phoned in prescriptions for Robyn and gave her strict instructions that she wanted to see her once we returned to Houston on Monday. The prescription wasn’t ready before the game and Robyn wasn’t about to wait for it. She was able to last until the 3rd quarter. It’s probably a good thing she left when she did because the neck pain coupled with the pain of defeat was more than she could deal with. Within hours of her first steroid dose, the pain was relieved and she was able to turn her head. With her pain relieved, she went to work on Saturday and Sunday to do the bookkeeping at Bennigans. That girl never ceases to amaze me. Yesterday we drove in to Houston. We went directly to the Radiation department but unfortunately, Dr. G was sick and not able to go to work. The nurse, Mitzi, checked with Robyn to see if she was okay and to tell us she was hoping Dr. G would be in tomorrow and would see her then. Last evening Christine Heyman and Rob Luke visited. It was Rob’s birthday and they wanted us to celebrate with them. ‘Hey-man’ also lovingly known as ‘Hambone’ and Robyn sang the birthday song in Spanish, something they both learned in their LSU Spanish class. Although it was Rob’s birthday, he had gifts for Robyn; a cute purple and gold knit cap handmade by Rob’s Aunt Linda. The cap could not have come at a better time since Robyn had forgotten to bring one from home and its cold here in Houston. The other gift was stalks of sugar cane. Robyn loves to chew on fresh cane. It was a precious moment to see them laughing as Rob cut bite sized pieces of cane for everyone. (Nana, you’re off the hook. No need to find roadside cane, our girl got fresh stalks straight from a cane field). Yesterday Robyn’s hip pain flared up....again. “My body just won’t give me any peace”. So today I ask you to please pray for peace.

Friday, November 9, 2007 8:56 PM CST

************************ UPDATE BELOW FOR 11/14/07 ************************

It’s Robyn’s mama .....that may give you a clue as to the contents of this journal entry.

Tuesday morning I received a phone call from Robyn. Her hip was hurting so much that to be able to walk, she had to adjust her gait. She called to see if I thought a walking cane might be helpful. I learned that the hip pain had begun a day earlier. She hoped it was from overdoing but today it was worse. I asked that she call the MD Anderson Sarcoma Center at once.

Rob called me back to say that her doctor wanted her to get to the E.R as soon as possible. Robyn asked if it was okay to go to the hospital in Baton Rouge instead (I suspect her plans were to go after work since she was off the following day). Dr. Benjamin sent word that he really wanted her to come to Houston; I agreed.

Robyn, Steve, and I checked in the emergency room at 3:15 p.m. X-rays of her hip and back were taken since she had been having pain in both areas. The doctor came in to say that an MRI of the spine had been ordered. We knew then that they had seen something on the x-ray. We were informed that there were some changes in her spine from previous MRIs.

The T-2 spinal tumor was now larger. We were told that someone from the Sarcoma clinic would be in touch with us and discharged Rob from the E.R. It was after 1:00 a.m. The Sarcoma nurse called Wednesday afternoon to say that we needed to stay in the city until Thursday when Dr. Benjamin could see Rob.

Taking that elevator ride up to the 9th floor felt as if I was about to walk a gang plank. Trying hard as possible, I couldn’t control the escape of tears on our elevator ride up. With my back to her, Robyn asked, “are you crying, Mama?” I apologized and said that I was scared. “Well,” she said in her funny voice, “you’d better get control or you won’t be able to come with me into the exam room. You understand?”. I did. She continued, "we have no idea what we're up against yet, so we shouldn't get all upset over what we don't know."

While waiting for the doc, Tammi, the Physician’s Assistant, told Robyn that she had watched the LSU-Auburn game with Valerie (the Auburn alumni that Robyn loves to torture). Robyn asked Tammi to please send her condolences to Valerie. Within 15 minutes Valerie was in the room, harassing Robyn who was, of course, wearing full LSU attire from head to toe, including customized LSU Nike athletic shoes.

Shortly thereafter, Dr. Benjamin entered the room, his first words were, “We’re in trouble.” The spine tumor was active again and it is larger. He said that it was a lgood thing that she decided to come to Houston. Tammi told us that Nicole (Dr. Benjamin's other nurse) had said Robyn probably wasn't coming based on their conversation. So, Tammi told us that the next plan to get me here was to "call her mama". Robyn thought that was hilarious.

After hearing those dreaded words, Robyn wanted to know the game plan; Plan A for the best case scenario and Plan B for the worst case scenario. The plan hinges on the results of a PET scan which will be done on Tuesday, November 13. The PET will reveal the extent of her disease. The new “gang buster” Ewing drug will not be available for trial use for several weeks.

The fight is on.

Robyn says, “I'm a Cajun. They should know how Cajuns are, we never do anything halfway...we do everything in excess, and that includes fighting.”

If that isn’t enough, she’s an LSU Fighting Tiger to boot! We admire her spirit and grit and are very proud of her. Please pray with us that she gets a chance for a fair fight. Ewing’s is a powerful opponent but with God’s help and your prayers we know she can beat this. God’s love and ours, Connie

*********************** Wednesday Nov. 14th Update ***********************

We had woke Robyn up yesterday at 5:30 a.m. (no small feat) to get started on pain medication to help her get through her PET scan because she finds it difficult to lay on her back because the tumor site is really sensitive. The prep for the PET scan started at 6:00 so David and Steve were going to bring Robyn and David was going to drop them off then come pick me up to go meet them. I received a call about 30 minutes later from Robyn telling me the scan had been cancelled because it was denied by insurance late the day before. The scan couldn’t be rescheduled because there was no 3 hour time slot open for the rest of day. I
was so upset that Rob thought they may have had to do CPR on me. We weren’t
sure how that would affect Dr. Benjamin’s decision on the scenarios mentioned above.

The MRI went on schedule early that afternoon and Robyn was a bit woozy all day due to the pain medications taken for those scans, so she just went from seat to seat sleeping all day. Right after the MRI we headed up to the Sarcoma center for our appointments. Dr. Benjamin felt he had enough information from the MRI to plan Robyn’s treatment. From what he could see in the MRI, there was no “significant” change to warrant scenario B… We would go the scenario A route with radiation first then reassessment later.

Next, we had an appointment with the radiology oncologist (I guess that answered the question whether radiation was going to be in Houston or Baton Rouge). It was the first time we had met the two radiology oncologists and we were amazed at how much they knew about Robyn’s case with never meeting us. Apparently, Robyn was “presented” at a conference last week, so there are many doctors who know about Robyn’s case.

OK, so this is the plan…

Radiation treatments are for 14 days on the tumor located in her spine.
Treatments run Monday through Friday and Robyn has weekends off. After those three weeks of treatment, Robyn has a “mandatory” break period for 3-4 weeks after for Rest and Relaxation. Knowing her, R & R consists of going back to work. After New Year’s, we will meet back at Houston for more scans and discuss our next strategy for treatment.

Robyn went for the radiation simulation appointment at 10:00 this morning.
That’s where they mark the radiation areas. She is marked almost her entire
torso with purple and red X’s and circles. Robyn jokes about her “bullseye” right under her neck. And I think she’s the only person who actually looks forward to the radiation simulation because they have to tattoo the intersecting marks on her chest and arms.

We will stay in Houston for three treatments this week, then go to Baton Rouge for the weekend, then travel back to Houston for Monday through Wednesday next week and be home for Thanksgiving Day. Robyn asked the radiologist to “please please” be off the Friday after Thanksgiving so she can participate in her traditional shopping extravaganza. She enjoys camping outside stores awaiting the next morning to get a shot at the best deals. She also says, “besides, it doesn’t make sense to drive back to Houston for one day (and just 15 minutes of treatment) then drive right back home. I don’t know if she will win that battle, but she can often be very persuasive.

That seems to be all for now. I will try to update as soon as possible as new developments arise. But as you all know, most of the time, no news is good news. I want to thank everyone for their continuing prayers for Robyn and our family during this time. We are making the best of it and spending a lot of time with friends who live in Houston. Christine Haman, Rob Luke, and Tim Dallinger now live in Houston. Robyn has been taking off with her friends nightly and enjoying a break from the hotels and hospitals and I’m heartfully grateful for everyone who visits, calls, and leaves us messages here on Caringbridge. You all have a very special place in our family’s heart… Connie

Friday, October 12, 2007 11:22 PM CDT

Hey everyone,

I know, I know... it's been a while since I updated... but in that time, there's been good and well, not so great news... I guess, let's get the not so great news out the way...

I had to make an unscheduled trip to Houston a few weeks ago... I was having severe back pain that caused a bit of concern to my doctors... I was hooked up with the "Pain Management" center at M.D. Anderson to help me cope with this pain medication-wise... the pain got to a point where I was unable to work and just lay up in bed all day taking break-through medication to help ease the pain... the majority of the pain was due to most of the muscles in my back tensing up and spasm-ing constantly... After an evaluation by new doctors and consults with Dr. Benjamin, I was put on a regular dose of medication that calms the nerves attached to my back muscles and I was also placed on a extended release pain medication... although I still have to take some break-through pain medication from time to time, it's very few and far between...

It took my body a good week to adjust to the new medication and that transition was rough... but now that my body is in equilibrium, I have been enjoying a pain free existence... which is my good news... there are a few days where I might be sore, but it is no comparison to that previous pain...

I'm still working hard at Bennigan's... I don't have any new job titles (since I already have most of them covered... like I said, "jack of all trades, master of none"), but I'm given new and more important responsibilities almost daily... and making some nice financial head-way for Christmas shopping :)...

All in all, everything is going great... I have a few Weddings to film in the next 6 months... and some decisions to make in terms of schooling... I'm still holding out for a specific film school to start, but if they push the class back another semester, I'm toying around with the idea of finishing my Biology Secondary Education Degree at LSU that I started before I got sick... we'll see where the wind blows... guess that's all for now... talk to you all soon...

Robyn

Saturday, August 18, 2007 8:48 AM CDT

Hey Everyone...

I got back from Houston about 11:00 pm Tuesday... it took us about 6 hours to get home thanks to an accident on I-10 during rush hour downtown... we had to detour around the city and catch Beltway 8, but as long as we were moving, we were closer to getting home...

Mom and Dad came with me this time for my appointments... as usual I had my barrage of tests that consisted of 3 CT's, 3 MRI's, complete blood work up, and chest X-rays... I also saw two doctors this visit... this was the first time I had an appointment with the orthopaedic oncologist who was being consulted for pain management and to see if there was something that could be done, orthopedically to ease my musculoskeletal discomforts. The results from my tests were a bit concerning this time...

There's a change in the area of my primary tumor site... the radiologist, Dr. Benjamin, and Dr. Cannon (the new doctor) all feel that it's continued bone change due to the radiation I had over a year ago. Radiation tends to have effects long after you've finished your last treatment, so having benefits or effects this far out isn't uncommon... we'll have more answers after my next round of scans in early November...

Interestingly, the bone doctor was surprised to see how well I was doing physically. I had gone to the restroom when he popped his head in and asked where I was... My parents told him where I had gone, and assuming I wasn't mobile, he asked how I had gotten there... My parents rather dumbfoundedly replied "well...she walked"... My parents were amused by the confused look on his face. I walked into the room about then and by the look on his face, it appeared he was shocked... guess I should have done a little dance number in the hallway to completely blow his mind... hehe... I guess he assumed after reading my medical records, that I was no longer ambulatory... guess he has a lot to learn about me, huh? :)

Dr. Benjamin had a big grin on his face when he walked into the examination room... he told me he had seen me earlier that morning in the MRI waiting room but my nose was so deep into the book I was reading, I didn't even notice him. He asked what sort of book would consume so much of my attention... I shot a smile to him and responded "Harry Potter"... I recently joined the Harry Potter club this summer... I'm on the fifth book now... and I'm actively seeking an autographed copy for my memorbilia collection (hint hint Mom and Dad)... hehe...

The doctors were also impressed by my "excellent" range of motion... I see a neuromedial masseuse for my aches and pains... I definitely recommend her to anyone who has back or shoulder pain... her name is Christine Taylor... I can email her information if anyone is interested...

guess that's all for now... I'll give you guys an update as soon as I get one... but for now, no news is good news, right?... I'll talk you all later

Robyn

Monday, August 6, 2007 10:10 PM CDT

Hey everyone... I'm trying to keep true to my promise to update more frequently... not much new news lately... just busy in the grind... I'm working only at Bennigan's now... I got promoted there so I had to let go of the Flower Shop gig... I'm now a server/manager/bartender/bookkeeper... So, as you can imagine, they keep me pretty busy... I'm enjoying every minute of it though... I've always wanted to be a bartender... Didn't think it would be when I was 25, but hey, better late than never... so, I keep up my mantra of "jack of all trades, but master of none"...

Finley, David, and Amy are still all doing well... With my work schedule so strenuous, it's even harder to get out to Denham Springs to go see them, but I talk to them about everyday... As you can see from THE NEW PICTURES I PUT UP, she's adorable as ever...

I head off to Houston next week (the 13th and 14th) for my three month visit... I'm meeting for the first time with a pain management doctor... the muscles in my upper back are really stubborn and don't want to act right, so we are going to discuss some long term pain management... all expected things... just want to start regulating before it starts to interfere with my day to day activiites... so be expecting an update soon with the results from the trip to H-Town...

Hope you guys enjoyed the new pictures... I love reading all the comments... keep them coming... talk to you all soon...

Robyn

Thursday, May 31, 2007 5:42 PM CDT

Ok, it looks as though I'm taking over the journal for a while... I guess Momma figures I'm healthy enough to go back to work, that I'm healthy enough to do my own journals... haha... so much has happened since the last journal entry... I don't know even where to begin... let's start with the BIGGEST and BEST news...

I'M AN AUNT!!!! Finely Rae DesOrmeaux was born April 21, 2007 at 10:17 pm in Baton Rouge... David and Amy are both doing well and adjusting to their new family in Dehnam Springs... I go visit as much as I can and Momma and Dad are excited to be new grandparents... if you want to see pictures of the cutest baby ever check out their myspace page... myspace.com/thedesormeauxs...

Next on the list of news was a bit of a scare... I started having a new pain in my back, so Momma and I headed to Houston a month early to get it checked out... I've never once called to tell them I was concerned enough to want to go there, but like I said, it was a new pain and they squeezed me into the schedule because I have never called them being concerned before... so after a barrage of tests spanning a couple of days, he had good news (well, good news to us)... I have two new fractures in my pelvis... you might be reading this and thinking... "two fractures is good news?" but let me tell you, it was the best news we heard all day... because the alternative news would not have been good... guess you have to pick and choose huh? haha... so, to wrap up the appointment... I just have to slow it down and quit lifting stuff that's too heavy for me to lift... It's just so hard to change an entire lifetime of habits so quickly... going from someone who used to bench press 165 lbs (during my collegiate soccer days) to not being able to lift anything over 20 lbs is a HUGE change... I just need to leave my pride out the door and ask for help...

I don't know if anyone reading this has realized it or not, but my year remission anniversary just passed a couple of weeks ago... seems like the year flew by... but this year was the most important to get through, medically... Emotionally, I didn't have a doubt... I guess you can say I'm just too stubborn to let that tumor wake up... so, 1 year down... 4 to go... because at the 5 year mark, I'll be considered cured...

Ever since I was sick, I had decided to start filming as a career... I've recently filmed another wedding and now I'm preparing to start an actual business... I'm working part time at a flower shop in Baton Rouge... Rickey Heroman's... you can see me driving around in a huge neon green van... I love it... something needs to be said about a job where everyone is happy to see you all the time... anywho, they are going to give my business card to brides that come in the store... so hopefully I'll be able to get a few filming gigs that way... we'll see...

Like always, I believe I have rambled on enough for now... I'll try to keep up with the journal more... and as soon as I get a chance, I'll upload some new pictures, cuz I'm sure you guys are tired of seeing those stingrays... talk to you all soon... drop me a line in the guestbook so I can see how many of you all still reading...

Robyn

Friday, March 2, 2007 9:14 AM CST

It had been three months since Robyn had her last scans, x-rays, MRI’s and blood tests. That time really flew by and a lot has happened. Robyn had two lithotripsy procedures for kidney stones and one emergency room visit for a very inflamed thumb joint due to a cat bite. She graduated from LSU in December and in February was presented with the Eye of the Tiger award at the LSU Tiger Athletic Foundation Banquet. In January Rob celebrated her 25th birthday and returned to light-duty work on a part-time basis at Bennigans Restaurant. It is where she used to work during the soccer off-season and semester breaks. Within three weeks of her return, she was offered a manager’s position. As grateful as we are for a place like M.D. Anderson, we both still dread having to make that trip. We were on the road bright and early Monday morning and were prepared for a long day since the last two MRIs were scheduled for 8:00 and 9:00 p.m. Monday night. Well, the MRIs had to be rescheduled for 6:30 Tuesday morning and instead of one long day, we had two. The days are especially long because of our anticipation of the test results. The long wait, however made the good news even sweeter. Dr. Benjamin told us that all the scans and images show old tumors and no active disease. The scans, however, did show a pelvic fracture. It was a hairline, stress fracture and indicates that Robyn needs to slow down her activity and be very careful since the bones of her pelvis are fragile from the effects of radiation. Remission continues and the good news didn’t stop there. Dr. Benjamin told us of a new drug trial currently underway at M.D. Anderson. It turns out that this drug is “gangbusters on Ewing’s.” Dr. Benjamin then said, “Robyn, we now have a game plan, should there be recurrence of your disease.” The joy and hope those words sparked within me was almost overwhelming. We were so excited that everything else we wanted to speak with Dr. Benjamin about was forgotten. We just wanted to know more about this new drug. So we left the exam room without asking Dr. Benjamin if he had seen any more kidney stones on Monday’s CT scans. Oh well, what’s a few kidney stones in the big scheme of things. We can deal with that. So, as Robyn puts it, she is “on parole” for another three months. Life is good. We can start looking forward toward the future, a future that now seems much brighter!

Thursday, December 28, 2006 2:14 AM CST

Well, it's about time I put my two cents on another entry... I FINALLY did it... I graduated last thursday... and as expected, partied it up Friday night the only way I know how... the cajun way... lots of family, friends, food, and fun... Thanks to everyone who made this all possible... which pretty much means everyone who is reading this right now, because this wouldn't have occured had it not been for everyone's prayers and faith in me... but especially, Mom and Dad... Cuz you two sacrificed the most to get me to this milestone... David, cuz you've done a great job protecting your little sis... the rest of the DesOrmeaux and Landry krewe (just wait until I get you back with my video Nana... lol) And to the rest of the family, friends, and everyone else I met along this journey... Sorry to get all sappy with my entry, but I figure I'd give everyone who reads this a little lagniappe (extra) for the dedicated readers... I'll be putting pictures up soon from the party and the graduation ceremony...

Christmas was awesome this year... mostly because it was the first Christmas in a couple of years that I wasn't in treatment... so, I was able to really enjoy the holidays... I was able to spend a lot of time at home with the parental units, David, and my new sister in Law, Amy...

I'll be in Baton Rouge the rest of the week working on my new video project... I'm making a historical family video for the Landry side of the family... I've already spent about 20 hours on it so far, and I am about half way done...

Well, I guess that's all for now... I know how I can ramble on... hope you all had a Merry Christmas and a Happy New Year... Keep the comments on guestbook coming... I still love reading them... let me know how you guys are doing...

fyi, my next trip to Houston will be in February, so the entries might be a little scarce between now and then...

talk you all later...
Robyn

Monday, December 25, 2006 8:00 AM CST

Robyn graduated on Thursday. We were a very proud family and on Friday, surrounded by family and friends, we celebrated. Christmas Eve, our family exchanged gifts, it was joyful. With a grand baby 'under construction', we look forward to the future. Life is good. Merry Christmas Everyone!

Thursday, December 14, 2006 7:46 PM CST

IT'S OFFICIAL! SHE DID IT! ROBYN WILL GRADUATE FROM LSU NEXT THURSDAY! SHE NOT ONLY MET THE G.P.A. REQUIREMENTS FOR THE 19 CREDIT HOURS SHE CARRIED, SHE EXCEEDED THEM! PRAISE GOD!

Tuesday, December 12, 2006 7:38 AM CST

Within 36 hours of posting the journal page requesting your prayers, Robyn passed the last, and largest of her kidney stones. A total of 5! Her pain was relieved immediately and she was able to start studying for her final exams. The power of prayers is a truly awesome thing and I can’t thank you all enough. On Friday she saw another doctor, not an oncologist, or a urologist, but an endocrinologist. She had thyroid cysts which had caused her some neck pain and swallowing problems. The doctor drained both sides of her thyroid gland, removing a large amount of fluid. The fluid will be tested but the doctor doesn’t seem too concerned since it looked normal. It’s down to the wire now for graduation. Robyn may know the results of her efforts as soon as this afternoon or tomorrow. A degree from LSU is still up in air but she graduates with honors from the school of hard knocks.

Monday, December 4, 2006 3:50 PM CST

I had forgotten to tell you all about a new development in Robyn’s health. Quite frankly, I was hoping it would simply resolve itself and there would be no need to mention it. No such luck. Just before her November 20 appointments in Houston, she had been having more than usual back pain. She chose not to tell me and her dad because she “didn’t want to worry us” and knew she’d be seeing the doctor in a few days. I became aware of all this when they were getting her medical information and asked her to rate her pain level on a pain scale of 0 to 10. She rated it “a 5". For the past few months, her pain had been “a 2 ½ to a 3.” I immediately became very fearful, and I think she did, too, that the tumor was raising its ugly head again. Gratefully, the scans showed that her disease is still in remission but they also showed the source of her increased back pain-kidney stones. Dr. Benjamin thought there was a chance that she might be able to pass them on her own and instructed her to drink lots of water. Again, no such luck. As usual, when it comes to Robyn, nothing is that easy. Although, she expelled four small stones in the next week, a large one became trapped in her right ureter. Friday afternoon, as she waited to see her doctor in Baton Rouge, she doubled over in pain and began vomiting. Her doctor sent her to the hospital immediately where she was referred to a urologist. I got a call to meet her at Our Lady of the Lakes Hospital. By the time I got to Baton Rouge, she was a pale as the sheets covering her and was getting IV morphine for pain. By 6:00 that evening she’d had a procedure called lithotripsy. It involves the use of shock waves to break up the stone. The doctor told us the success rate of lithotripsy is about 75 percent. Robyn said that she felt as if she had gotten “kicked in the gut.” Because she was not able to urinate normally and continued vomiting, they kept her in the hospital overnight on IV fluids. Rob took it easy Saturday and Sunday but is still in alot of pain. We need your prayers again. Robyn has worked so hard to graduate this semester and now with less that two weeks and final exams to go, these stones and the pains they are causing are, may keep her from reaching her goal. I know that in the big scheme of things, graduation is a minor thing, but it means a lot to her. Please pray for successful treatment and resolution of Robyn’s kidney stones so that she can graduate on December 21. We all know the power of prayers; maybe God will hear and answer them.

Thursday, November 23, 2006 9:32 AM CST

Earlier this week, Robyn and I went to MDA for another follow-up evaluation. While waiting her turn to go back into an exam room, Valerie, Dr. Benjamin’s nurse and an Alabama alumni, came out into the lobby to greet us. Robyn was sporting her usual LSU apparel and after a friendly exchange, could no longer hold her tongue; “Valerie, I didn’t catch the final score of the LSU-Alabama game, did you happen to catch it?” Well, it was 4:00 and Robyn was the only patient left in the waiting room. I suspect she was lucky to get seen at all. “Hee, hee, hee, sorry Mama, I just had to.” The trip home was very light-hearted because all the results were good. On the way home, we spent most of our time planning for the possibility of a graduation party and Popeye’s chicken was the celebration meal. Rob has been working tremendously hard to earn the necessary quality points she needs for her degree. She is carrying more hours and must score higher grades than ever before and is pushing with such determination. Her dad and I think she will make it but if she doesn’t, it won’t be because she hasn’t worked hard enough. The time she spends working on assignments and studying for tests leaves little free time for anything else. School takes all the energy she can muster and even if she had time to go out, I don’t think she’d have the energy. Last week there was an article about Robyn in the Reveille, the LSU newspaper. It made the front page. The reporter, Amy Brittain, did a great job. I was tickled when as our phone conversation was nearing an end, Amy said, “Oh, by the way my mom wanted me to remind you to update Caringbridge.” Although her mom and Robyn had not met until just recently at the LSU-Alabama game, Amy tells me that she has been following her progress through Caringbridge. It is amazing how far-reaching and helpful this web-site has been. There is a link to the newspaper article below if you’d like to see for yourself what a talented journalist Amy is.

On this Thanksgiving Day, I feel so blessed to be home. What great joy it is to have all my family safe, sound, and growing, with the most recent addition of Amy, David’s wife. I’ve baked pumpkin cheesecakes to bring to family gatherings and will savor every family moment of this holiday weekend. My prayers continue for those who are battling their disease and for their families. Robyn’s remission is testimony to the miracle of prayers; I pray that you, too, will be blessed with a miracle. Happy Thanksgiving, Everyone.

Wednesday, September 27, 2006 3:52 PM CDT

Wednesday, September 20th we went back to Houston for more follow-up scans. On Thursday Dr. Benjamin gave us the results. The reports were all good. Robyn asked Dr. Benjamin if the scans would be done less often since she is in remission. He told her it is necessary to keep a close eye on the tumor to be sure it remains inactive. He wants to repeat all the scans every two months for the next two years. Hearing this, her eyebrows shot up as she asked, “You mean I’m on probation?” With a twinkle in his eyes he replied, “Yes, you're on probation.” Rob’s classes at LSU are going well so far. She was granted permission by the University to carry the heavy 19 hour schedule and is still shooting for a 2006 graduation. However, walking the long distances to classes causes back pain. Her brother, David, recently found a 'vintage' motor scooter at a garage sale. The scooter is only one year younger than Robyn. David did some repairs and painted it in the traditional Robyn style, purple and gold. I imagine she is quite a sight, cruising down Nicholson and about the LSU campus with her LSU soccer backpack, wearing purple and gold LSU Crocs, riding the purple and gold scooter! This weekend David and Amy will be getting married. They have chosen to have a small, intimate wedding with only the immediate family in attendance. The ceremony will be held at the historical St. John Church in Washington, LA. We are very happy for David and look forward to having Amy in our family.

Wednesday, September 27, 2006 3:52 PM CDT

Wednesday, September 20th we went back to Houston for more follow-up scans. On Thursday Dr. Benjamin gave us the results. The reports were all good. Robyn asked Dr. Benjamin if the scans would be done less often since she is in remission. He told her it is necessary to keep a close eye on the tumor to be sure it remains inactive. He wants to repeat all the scans every two months for the next two years. Hearing this, her eyebrows shot up as she asked, “You mean I’m on probation?” With a twinkle in his eyes he replied, “Yes, Robyn you are on probation.” Rob’s classes at LSU are going well so far. She was granted permission by the University to carry the heavy 19 hour schedule and is still shooting for a 2006 graduation. However, walking the long distances to classes causes back pain. Her brother, David, recently found a vintage motor scooter at a garage sale. The scooter is only one year younger than Robyn. David did some repairs and painted it in the traditional Robyn style, purple and gold. I imagine she is quite a sight, cruising down Nicholson and about the LSU campus with her LSU soccer backpack, wearing purple and gold LSU Crocs, riding the vintage purple and gold scooter! This weekend David and Amy will be getting married. They have chosen to have a small, intimate wedding with only the immediate family in attendance. The ceremony will be held at the historical St. John Church in Washington, LA. We are very happy for David and look forward to having Amy in our family.

Thursday, August 3, 2006 6:17 AM CDT

Last week we made an unplanned return trip to Houston. Robyn began to experience back swelling and an increase in back pain. The doctor wanted to check it out in case it was caused by recurring tumor activity. Needless to say, I was on pins and needles. Scans were done and all is okay. The doctors feel that she is probably doing too much. Although her disease is in remission, the tumor remains in her pelvis and I guess it was just reminding her of that fact. Rob got instructions to slow down and take it easy so that her body could mend from all the treatments it had received. She had been hearing the very same recommendations from me and her dad but I guess it had to come from a higher authority. Chelsea and Nana (Aunt Amber) accompanied us to Houston so our time there went by much more quickly. We did a little shopping and visited the Houston Museum of Natural Science where we saw the Living Body exhibit. It featured actual human bodies that had undergone a plasticizing procedure to allow viewing of the internal organs and structures. It was a very humbling and somber exhibit. Later this month Robyn will be traveling to Denton, Texas for Sara Cadenhead's wedding. She is very happy for Sara and her fiancé, Bob and was thrilled when Sara asked her to serve as a bridesmaid. This weekend she is going to Austin for the bachelorette party. Last evening Robyn came home to visit before leaving for Texas. Rickey Zambrano was in town doing a soccer camp; he, Rachael, and Tudd came over for a visit. It was great fun listening to their LSU soccer stories. Steve and I turned in around 11:30 because I needed to get a good night's sleep. You see, I, too, am going to a bachelorette party tonight. A former coworker, and close friend, is getting married this fall and the ‘girls' from work are taking her out. The soccer stories, however, continued long after we went to bed. Classes at LSU will begin August 28th. Robyn has 19 credit hours between her and a degree and has scheduled them all this fall........so much for taking it easy.

Friday, June 16, 2006 3:30 PM CDT

We returned from MDACC last evening. The PET scan and MRI results were in. Do you know how to spell relief? We do, it's R E M I S S I O N ! ! ! ! Praise God!

P.S. new pictures up and let me (Robyn) know what you guys think of the new picture on this page... thought you all would like to see the evolution of treatment this past year and 8 months... (took me a long time to do, so let me know)... and as always thanks for everyone's thoughts and prayers during the long haul... all of you are my inspiration :)

Friday, May 19, 2006 8:25 AM CDT

The reports are in. The radiologist feels that the scans indicate the continued presence of a tumor. The oncologist, however, is hopeful that the scan images may reflect bone changes that have resulted from treatment. We choose to believe the oncologist. Since the effects of radiation occur for months after the treatment is complete, there will be more scans later.

Fish breeding is booming. The betta fish has laid eggs and Robyn has been monitoring them closely. If all goes well, there will be lots of babies to take care of.

This month is filled with parties. Cousin Brandon, (the youngest of the grandchildren) has graduated from Jennings High school. He is enroled in a Houston area college and will begin next month. Danielle Keath, Megan Jacqmin, Holly Davis, Chelsea Agar, Lisa Newton, and Stacey McDougall are graduating from LSU this week and Chelsea’s wedding is next week. Robyn will be traveling to Victoria Island Canada to attend and video the wedding. She plans to extend her stay so that she can experience the beauty of the Canadian island.

Robyn continues to have her mind set on competing in the World Series of Poker Tournament. She has been sharpening her game skills and has been studying human behavior interpretation so that she can better read her opponents. Apparently it paid off because she has won her first tournament. It was exciting to see her bump-off far more experienced players, one after another. She was only the second female to have ever won in the history of that tournament, a fact that the second place guy wasn’t too happy about. Although the winner’s take wasn’t very large, to see her expression as she experienced the ‘thrill of victory’ was..........priceless.

Saturday, April 29, 2006 10:52 AM CDT

Robyn completed the prescribed series of radiation with the same determination and strength she has had throughout her treatment. On the last day of radiation she was informed of their time-honored tradition. It was started by a former Navy veteran patient. He said that it was a U.S. Naval traditional to sound the ship's bell three times to announce the ship's safe return home to port. The bell was a means of letting everyone know that the sailors were ‘home-free'. The old sailor felt that it was equally appropriate to commemorate successful completion of radiation treatment. So he brought an authentic naval ship bell to the department and now each and every patient who completes their treatment is to strike the bell three times to symbolize that they too were 'home-free'. Radiation centers across the country have adopted this tradition, however, it began at M.D. Anderson. When the bell rings everyone within earshot is familiar with its sound and significance, so there were cheers and applause when Robyn sent three resounding GONGS from the old ship bell. It was a very touching moment. In mid-May Rob will have scans to determine the results of radiation on the tumors. In the meantime, she is taking good care of her deeply tanned, blistered, and cracked skin and is slowly regaining her energy level.

This week Robyn will be taking final exams in the Graphic Design and Desktop Publishing classes she has been taking at the LA Technical College. So far this semester she has been able to maintain a 4.0 G.P.A. In her free time, she has been busy with her latest hobby-fish breeding. She is breeding guppies and betta fish. She has a couple of aquariums and holding tanks to separate them at various time intervals. She did extensive research on these fish and is taking this very seriously. I think I may know what I'll be getting for Mother's Day (and what everyone will be getting for Christmas).

Thursday, March 30, 2006 2:09 PM CST

Robyn is into the fourth week of radiation treatment and has done really well. She tells me that her butt “which has never seen the light of day” is now sporting a bronzy tan. The radiation therapists have been great; scheduling her Monday appointments for late afternoon and her Friday appointments in the early morning. This gives her a little more time to be home, which she fills with activity. On Mondays when I get the weekend update, I am exhausted just hearing about it! Last weekend Robyn completed a video project for her Aunt Amber (Nana); a 25 minute video production of photographs and videos honoring an uncle who had recently celebrated his 90th birthday. The results were very professional and quite entertaining. Mondays and Tuesdays are very tiring for Robyn however; by Wednesday she has a little more energy and is ready to do something. Last evening she and Cousin Ricky went to an indoor shooting range. Ricky let Robyn use his 40 caliber pistol. It was her first time firing a hand gun and apparently she did pretty well because Ricky has assured me not to worry about Robyn, “she can take care of herself”. They shot about 400 bullets and she missed the target area only once. She especially enjoyed shooting at a target picture of Osama Bin Laden. Robyn’s latest interest is Texas Holdem Poker. She watches it on T.V., plays with friends, and has been reading up on various aspects of the game. Her goal is to play in the World Series of Poker and I wouldn’t be the least bit surprised if she did. My latest plan is for a family getaway. I have planned a family week together for some R&R&R-rest, relaxation, and recuperation as soon as Robyn completes radiation. If there is one thing I’ve learned from this experience, it is that you should never put off things that are important.

Saturday, March 11, 2006 3:00 PM CST

On Valentine’s Day before leaving for Houston, we had dinner with the family. Robyn and her brother David were in rare form reminiscing about their youth and delivering one-liners that had me and Steve in stitches. I had to coax Robyn into leaving, and we didn’t get to Houston until after midnight. Leaving late, however, worked out in our favor. When we arrived at the Holiday Inn, our room with two double beds was no longer available and our reservations had to be upgraded. They put us up in the deluxe suite which had two bedrooms, a kitchen, dinning and living room. Rob had a multitude of scans on Wednesday which continued Thursday morning. She then saw Dr. Benjamin, her sarcoma oncologist, for the results. The tumor in her left pelvis is still there, however, it is smaller. Dr. Benjamin decided that she would not get any more chemotherapy. He said that his decision was based upon the tests results as well as “fear for my life”. He joking teased, "If I came into this exam room and said more chemo, I think I may have been shot”. Rob smiled back and said, “17 rounds of chemo in 14 months is just about enough for anybody”. So now it’s onto the next phase of treatment-radiation. An appointment was made with an oncology radiologist for the next day. Since our stay was extended, we decided to go to the mall to kill some time. While driving there, cautiously I might add, Robyn’s shouted, “Momma, pull over! Quick! Into that shopping center”. Having no idea why, I crossed two lanes in heavy traffic, barely making it onto the lot where there was a restaurant named The Raging Cajun. At it's front door was a BIG sign advertising, HOT Boiled Crawfish. Robyn then explained, “I think we need to celebrate the good news we got today with a few little craw-dads, don’t you”? The crawfish were from Crowley, LA and they were GREAT! Friday, Robyn saw the radiologist. A simulation for the radiation treatments was done and markings were drawn to identify the areas of her pelvis to be treated. She was told that a couple of tattoos would be done, one on each hip, to serve as landmarks. “Tattoos? Did you say tattoos? Can I choose the TAT designs? Can they be purple”? Were her only questions. To her disappointment, there were no choices; they would be small black dots. Oh, well. Do you remember that comment Rob made in the last journal entry, regarding Mardi Gras? Well, it should come as no surprise that she was able to talk both doctors into deferring the treatments until the week after Mardi Gras. So, she spent the holiday weekend in New Orleans then came to Lafayette Mardi Gras day. She topped it all off with boiled crawfish for dinner Tuesday night. The radiation treatments began Monday March 6th. She receives daily treatments five days a week and is off on the weekends. The first couple of days were awful. Robyn vomited several times that first day and was miserable on the car ride back to the Woodlands where we are staying with cousin Ricky and Marion. That evening she took the anti-nausea medication that helped get her through chemo. The next day was a little better, she vomited only twice. We increased her medication and by Wednesday things were much better, so much so that by Friday she was making plans for the weekend-in Baton Rouge. With the first week of radiation done, we headed home. During the trip back, Robyn had a very pleasant surprise, a phone call from a fellow LSU athlete and Dallas Cowboy pro football player Marcus Spears. Marcus is on a break from football and being the kind and considerate young gentleman that he is, thought of Robyn. So he made a call to check in on her. Well, that brought a very big smile to her face!

Monday, February 13, 2006 5:30 AM CST

Ok, so I have been asking Momma to update this webpage for like 3 weeks, and she asked me to go ahead to do it myself cuz she's really bogged down with teacher stuff... so for the second time in this webpage's exsistence, I'm the guest writer... Since the last entry, I had another round of that chemo, but decided to pull myself out of the second part b/c I got really sick... both doctors were ok with this decision and believe I got the full benefit of this chemo round... so, for the last two weeks, I have been recovering from this bout of chemo and feeling better everyday... Momma and I are leaving for Houston Tuesday night for two fun days of scans/xrays/blood work/ultrasounds... I plan on doing a bit of bargaining with Dr. Benjamin to hopefully be able to celebrate Mardi Gras in two weeks (can't keep a cajun from their Mardi Gras, now can you?) before starting radiation (which is the next and final part of my treatment)... I have been told that radiation will last for two to three months... I have a lot planned after radiation... I'm attending three weddings and are in two of the three... Chelsea Agar(my former team mate/room mate is getting married to Nick in May... Sara Cadenhead (also a former team mate) is getting married to Bobby (I call him Bob) in August... and my cousin Jamie Simms is getting married in September to Jason... and in October, Kate Ripple (another former team mate) is getting married to Jayme... I wonder if I'm going to have enough hair for an up-do by that time... haha... I don't think they would appreciate my purple faux-hawk, although, I think it's rather awesome... speaking of... I added some new pictures, so check those out... I guess that's all for now... I still really enjoy reading the post on the guestbook... drop me an email if you want, cuz I think everyone loves getting personal emails... ok, I think I rambled enough on this entry... hope you enjoyed the second installment of my guest writing... talk to all of you soon... Robyn

Friday, January 13, 2006 2:46 PM CST

Robyn completed the first round of Irinotecan chemotherapy on Sunday 1-8-06, or maybe I should say it just about finished her. On the first day of treatment, the medication was administered through an IV in her arm. The next day she went to the hospital where they inserted and stitched a long-term IV line called a PICC line. PICC stands for peripherally inserted central catheter. It measures 40 centimeters and is placed in the arm and advanced about 30 cm. into a vein. X-ray is used to guide and place the tubing, then it is stitched in place. It was put in her left upper arm. She received the remaining nine days of chemo through this catheter. At the start, she had severe nausea and vomiting. We knew to expect diarrhea but did not anticipate the vomiting. It took three days to resolve that problem then the diarrhea started. For a day or so she lost fluids from both ends (but that’s probably more than you wanted to know, huh?). Anyway, you get the point; it was brutal. The second part of the first round had to be delayed because of dehydration. It took prescription strength medication to help get the diarrhea under control and even now, it is still a problem. Finally, on Sunday Rob completed the entire first round. Tuesday night she awakened with pain in her left arm. In the morning she called her doctor who checked her arm, then ordered an ultrasound to be sure there wasn’t a clot.....there was. A blood clot had developed in the vein where the catheter was placed. The PICC line was discontinued and an IV was started in the other arm to administer fluids and help hydrate her. An anticoagulant injection was then administered into her abdomen. She must continue to get these injections daily for five days and also must take an oral anticoagulant until the clot resolves. The game plan has changed. She will have the second round of Irinotecan chemotherapy in Baton Rouge and the radiation treatments will be delayed for now. Tuesday, January 17 is Rob’s birthday. She usually has BIG plans but so far hasn’t decided on anything for this year. Maybe once her fluid balance is restored and she is feeling better, she may want to celebrate–I sure hope so.

Wednesday, December 21, 2005 8:01 AM CST

Robyn had two long days in Houston. Her first appointment was at 7:30 a.m. Monday December 12. Her last appointment was with Dr. Benjamin and it ended at 7:30 p.m. on Tuesday December 13. She had two CT scans, four MRIs, one x-ray, and blood tests. Except for an area in the left pelvis, the scans looked good. We were expecting the doctor to prescribe radiation treatments. Instead, he feels the need for more chemotherapy. Robyn will begin taking a new chemo drug, one she has never taken before. The drug is called Irinatecan and it will be administered IV. The major side effect is diarrhea (she goes from having side effects on one end to having them on the other). Dr. McCannless will manage her treatment in Baton Rouge. If all goes well, we may go to Houston for the second round where they will administer the chemo concurrently with radiation. Initially, the plan was to start on Monday, December 19. However, because of a sinus infection, it has been postponed until the 26th. We were not disappointed about the delay. Each round will consist of five days of chemo, followed by two days off; then five more days of chemo, and seven days off. For now we will focus on Christmas and will enjoy and appreciate our time together to the fullest. Each day I pray a rosary of gratitude because it helps keep me focused on the good in our lives. I want you to know that you all are in my prayers; I call you our ‘earthly angels’. To all of our Earthly Angels, have a safe, healthy, happy, and joyful holiday season and a very Merry Christmas.

Wednesday, December 21, 2005 8:01 AM CST

Robyn had two long days in Houston. Her first appointment was at 7:30 a.m. Monday December 12. Her last appointment was with Dr. Benjamin and it ended at 7:30 p.m. on Tuesday December 13. She had two CT scans, four MRIs, one x-ray, and blood tests. Except for an area in Rob’s left pelvis, the scans looked good. We were expecting the doctor to prescribe radiation treatments. Instead, he feels the need for more chemotherapy. Robyn will begin taking a new chemo drug, one she has never taken before. The drug is called Irinatecan and it will be administered IV. The major side effect is diarrhea (she goes from having side effects on one end to having them on the other). Dr. McCannless in Baton Rouge will manage her treatment in Baton Rouge. If all goes well, we may go to Houston for the second round where they will administer the chemo concurrently with radiation. Initially, the plan was to start on Monday, December 19. However, because of a sinus infection, it has been postponed until the 26th. We were not disappointed about the delay. Each round will consist of five days of chemo, followed by two days off; then five more days of chemo, and seven days off. We plan to enjoy our Christmas together to the fullest and hope you will too. Each day I pray a rosary of gratitude. It keeps me focused on the good in our lives. You all are in my prayers; I call you our ‘earthly angels’. Have a safe, healthy, happy, and joyful Christmas.

Friday, December 2, 2005 2:43 PM CST

Robyn tried to complete her second round of oral chemo. This one didn’t go very well. She called Dr. Benjamin to report the problems she was having and he took her off the medication. This really scared me. Suppose this was the ‘silver bullet’ that would do the job? Robyn says that I need to stop worrying. Rob has been very grateful for the chemo break. She is feeling much better and just in time for semester finals. The next medical evaluation has been rescheduled for December 12 and 13. Dr. Benjamin will decide then if she will have radiation treatments; if so, they will be administered in Houston. For the past two weeks Robyn has enjoyed doing so many of the things she couldn't do this past year. It is a joy to see her so energy-filled. She has been exercising, swimming, running and even works out in the training room. She desperately wants to loose the weight she gained while on steroid medications and is trying to restore her stamina. Last weekend she and David went to the LSU-Arkansas game-they had a blast. This weekend she is traveling with a group of soccer friends to Georgia for the SEC Conference Championship game. The girls will be staying with the Mitnick’s.....Georgia will never be the same!

Friday, November 4, 2005 2:29 PM CST

We have been very busy with matters of everyday life. It's great to say that our days have been ordinary because we surely appreciate ordinary days. Robyn's been busy with her classes and keeping up with the LSU Women's Soccer team. It was less than a week ago that we received a phone call from the team's #1 fan, to tell us that the girls had defeated Arkansas, earning them a spot in the SEC tournament. Rob drove to Alabama to see them play and although the team did not advance, it was an accomplishment they can be proud of. GO TIGERS!!! Robyn's first month of oral chemo is done. I don't think she expected to have the degree of nausea that she did. We were hopeful that the oral preparations would be more tolerable than the injectable ones. She was able to deal with it by sleeping through the drug's peak action hours (at least that the reason she gave for sleeping until the afternoon). She certainly is enjoying her freedom from the "tubes" (that's what she called the central line IV catheters). She's been swimming and showering every chance she gets. For Halloween she came up with all sorts of party costume ideas-a cue ball, a Q-tip, then finally opted to go as a Chia pet (or should I say a Chia head). She chose the Chia idea because her hair, although sparse, is trying to make a reappearance somewhat like a Chia plant when it first sprouts. I'm sure she was a sight! We're making plans for the Holidays starting off with Thanksgivings followed by our traditional after-Thanksgiving Day shopping. We missed it last year so it will be especially sweet to be a part of the madness this year. There isn't much to report on this month, but as they say no news is good news.

Sunday, October 9, 2005 6:54 PM CDT

Robyn's appointments at M.D.A. were staggered over several days and this left us with extra time on our hands. So, between appointments we visited some really neat shops in the area around Rice University. Oddly, Robyn felt like Christmas shopping. From the start, she had small indications to suggest that things would go well. For example, one of her appointments was for blood work. I waited in the imaging area as she went down to the lab. Lots of patients require lab work and each must register at the front desk. A laboratory technician then calls a group of names and these patients follow her to the back to have their blood drawn. When Robyn returned to the imaging center, she told me that for the first time since she's been going to the M.D.A. lab, her name had been called first. "You're kidding," I responded, "in all this time your name has never been called first before?" "Nope," she said. After a moment I asked, "how many names were called?" "Two," she replied, "but mine was first." Rob, the eternal optimist. Well, it turns out that she was right. She saw Dr. Benjamin on Thursday. The CT scans verified the MRI findings. The views of her spine were good. The tumors in her pelvis are stable and even showed a little improvement. Dr. Benjamin said that although the changes were slight, they were all in the "right direction"; he was pleased with the results. The next course of treatment will be twelve weeks of oral chemotherapy and Robyn's next appointment at M.D.A. will be early next year! Dr. Benjamin gave her the option to keep or discontinue the central intravenous line she has in her chest, indicating that she may need it again later. The thought of being able to shower and swim won out and she had it removed. Dr. Benjamin then gave Robyn a big bear hug and said to me, "I'm holding that tiger"; I thought to myself, so are we, Dr. Benjamin, so are we. After a quick trip to the pharmacy to pick up the chemotherapy medication, we were on our way home. The oral chemotherapy is one of the same medications that she was getting by IV. It is called etoposide or VP-16 and it causes the same side effects, nausea, hair loss, and bone marrow suppression. After one celebration detour to Popeye's we were on our way home. The four-hour trip was filled with talk about all the things we want to do during the next 12 weeks, for Thanksgiving, Christmas, and New Year's Eve! The power of prayer is truly awesome. We can't thank you all enough.

Tuesday, October 4, 2005 11:59 AM CDT

Robyn attended the Lance Armstrong Tour of Hope at M.D. Anderson Medical Center yesterday. Lance first made a public appearance on the steps of the University of Texas Conference Center, offering words of hope and encouragement to a large group of fans. He then held a, by invitation only, smaller panel discussion. Robyn was among a group of 400 invited guests. She jokingly said, “The criteria to be on the guest list was awfully steep, you had to either have cancer or be a survivor”. To the disappointment of everyone in attendance, the event chairperson informed the group that Lance would not be signing autographs. In spite of this announcement, five lucky attendees were able to get the much sought after autograph. Robyn now owns an autograph copy of Lance Armstrong’s best seller It’s Not about the Bike”. This week Robyn will be re-evaluated with MRI’s, CT Scans, and lab work. She will see Dr. Benjamin on Thursday to get those results and to discuss the next phase of treatment. We’re all praying hard.

Sunday, September 18, 2005 7:21 PM CDT

9-18-05 Update: Ryan Dwyer, my sister Amber's son, has been wanting to do something for Robyn for quite sometime. He had the idea to host a Co-Ed softball tournament as a means of raising funds. Robyn, and all of our family, are deeply appreciative for all the help Robyn has received. We recognize that there are many others far less fortunate and together wanted to do something for them. On Saturday, October 8, 2005 Ryan Dwyer will host the first Miles Perret-Robyn DesOrmeaux One Pitch Co-Ed Tournament. The Miles Perret Center is a resource center dedicated to helping those in our Acadiana community who are fighting cancer and those who are seeking a cure. We need your help to spread the word. Ryan is hoping to have at least 24 teams. Pelican Park in Carencro is donating the free use of their park. The entry fee for each team is $125.00. All of the proceeds generated by entry fees will be directed to The Miles Perret Center in Lafayette. Admission fees will be directed to the Caring Bridge organization. Robyn's friends will be selling purple bracelets, T-shirts, and will raffle collector items donated by LSU and fellow LSU athletes who are now playing on professional teams. Ryan is in need of teams to participate, volunteer score keepers, umpires, and people to work the admission gate. Please call Ryan at 337-257-4585 if you want to enter a team or wish to volunteer your help. It will be great fun, we hope to see you there.

In the mist of all the hurricane fury, Robyn received her 12th round of chemo in Baton Rouge. Almost everyone in Baton Rouge lost electricity except for Robyn's apartment complex. Is that devine intervention, or what? We were very grateful that she could be at home for her treatment with all of the weather-related problems there were. Aside from delays because of hectic circumstances, things went well and we did not complain. Like all of you, our thoughts and prayers were for the hurricane and flood victims. We have a displaced couple, Mike and Lynn, from Belle Chase staying with us. We are very happy to be able to do for someone else what so many have so generously done for us. Robyn will be re-evaluated at M.D.A. the first week in October. This means that she will have an extra two weeks off. When she inquired about the late appointment, she was told that her doctor was out of the country until then. Instead of seeing another doctor, she opted to wait and see Dr. Benjamin when he returns. She will have a complete re-evalutaion with MRIs and CT scans. Please pray for good results. On October 3, M.D. Anderson will host a panel discussion. Lance Armstrong will be among the participants. It is by invitation only and you've guessed it, Rob's been invited to participate....now that should be very interesting!!!

Wednesday, September 14, 2005 1:55 PM CDT

9-18-05 Update: Ryan Dwyer, my sister Amber's son, has been wanting to do something for Robyn for quite sometime. He had the idea to host a Co-Ed softball tournament as a means of raising funds. Robyn, and all of our family, are deeply appreciative for all the help Robyn has received. We recognize that there are many others far less fortunate and together wanted to do something for them. On Saturday, October 5, 2005 Ryan Dwyer will host the first Miles Perret-Robyn DesOrmeaux One Pitch Co-Ed Tournament. The Miles Perret Center is a resource center dedicated to helping those in our Acadiana community who are fighting cancer and those who are seeking a cure. We need your help to spread the word. Ryan is hoping to have at least 24 teams. Pelican Park in Carencro is donating the free use of their park. The entry fee for each team is $125.00. All of the proceeds generated by entry fees will be directed to The Miles Perret Center in Lafayette. Admission fees will be directed to the Caring Bridge organization. Robyn's friends will be selling purple bracelets, T-shirts, and will raffle collector items donated by LSU and fellow LSU athletes who are now playing on professional teams. Ryan is in need of teams to participate, volunteer score keepers, umpires, and people to work the admission gate. Please call Ryan at 337-257-4585 if you want to enter a team or wish to volunteer your help. It will be great fun, we hope to see you there.

In the mist of all the hurricane fury, Robyn received her 12th round of chemo in Baton Rouge. Almost everyone in Baton Rouge lost electricity except for Robyn's apartment complex. Is that devine intervention, or what? We were very grateful that she could be at home for her treatment with all of the weather-related problems there were. Aside from delays because of hectic circumstances, things went well and we did not complain. Like all of you, our thoughts and prayers were for the hurricane and flood victims. We have a displaced couple, Mike and Lynn, from Belle Chase staying with us. We are very happy to be able to do for someone else what so many have so generously done for us. Robyn will be re-evaluated at M.D.A. the first week in October. This means that she will have an extra two weeks off. When she inquired about the late appointment, she was told that her doctor was out of the country until then. Instead of seeing another doctor, she opted to wait and see Dr. Benjamin when he returns. She will have a complete re-evalutaion with MRIs and CT scans. Please pray for good results. On October 3, M.D. Anderson will host a panel discussion. Lance Armstrong will be among the participants. It is by invitation only and you've guessed it, Rob's been invited to participate....now that should be very interesting!!!

Wednesday, August 17, 2005 12:57 AM CDT

Sorry for not posting a recent update. Things have been crazy–but that means that things are also more ‘normal’. Robyn’s last MRI scans didn’t show any change. I was disappointed but Robyn reminded me of a time before when the scans hadn’t shown changes. It was the first time her chemo protocol was switched and then the next scans were really good. I just love her optimism. We stayed with our cousins in the Woodlands. It had been 12 weeks since we saw them last. Those of you who know both Ricky and Robyn can imagine the amount of talking that went on. It was great! We were all up well past midnight and no one wanted to turn in. However 5:00 came early and we were back on our way to MDA by 6:15. In spite of getting into an exam room before noon, we didn’t leave Houston until 4:00 p.m. Tuesday afternoon. Waiting for medical appointments sure makes for a long day. We were especially anxious to get back home because Rickey Zambrano was coming to visit. Rickey was Robyn’s LSU goal keeper coach and was in Lafayette for a soccer camp. Robyn wanted me to prepare a Cajun meal; I thought it would be safer to grill steaks. She was right (again). Rickey seemed to enjoy the shrimp kabobs and fried Toledo Bend sac-a-lait (or as our Texas friends say, “crappie”), and crawfish etoufee. It was great to see him again, and both Steve and I enjoyed their laughter. Rob’s latest chemo round should have started on Thursday but had to be postponed because of a low white blood cell (WBC) count. The chemo drugs are especially hard on the bone marrow which produces blood cells. A low WBC count makes her vulnerable to infections. She had to wait until her WBC count reached a required number before chemo could begin. This meant that she had an extra weekend off and she was really happy about that. On Saturday Nicole, one of Robyn’s roommates and the manager for the LSU Women’s Soccer team, was assigned to paint the visitor’s locker room at the soccer complex. Her deadline for completing the job was Tuesday morning. Having visited the complex before, I can assure you that it was quite a job. Sunday, around midnight, Robyn drove to the complex to check on Nicole. Putting her face up against the window, she knocked on the glass. A startled Nicole shouted, “You scared me! You look just like Powder; I thought I was seeing a ghost.” After a good laugh the girls got to work and by 5:00 a.m. the paint job was done. Once she cleaned up, Robyn went to the lab to get her blood drawn to see if her counts had improved and by that afternoon she was admitted for chemo. She received two infusions of chemo each day for five days. The first two treatments as an inpatient and the next three as an outpatient. She had a continuous IV infusion which was delivered by a portable pump and I stayed with her for the week. Fall soccer started for Tara and Nicole and we didn’t get to see them very much but it was fun when they were home. Whew....it’s good to be back at work so I can rest.

Friday, July 15, 2005 11:05 AM CDT

Robyn was due for her 10th treatment on Wednesday, July 6 but was able to get it postponed until Saturday so that she could video a wedding Friday evening for her LSU friends, Ken and Micki. Laura Klatter helped her and both said that the ceremony was beautiful. Rob returned home exhausted; she and Laura worked hard to get good footage.

Robyn was able to get this round in Baton Rouge. She was grateful to be home and except for having to stay in the hospital for her treatment, things went fairly well. She was hoping to get the chemo as an outpatient and go home each day with a pump but that didn’t happen. Dr. Benjamin has ordered more MRI’s in Houston before beginning the next round so that he can evaluate Rob’s progress. I always get anxious about getting the results. Robyn usually has some big plan, something to look forward to, after each treatment; it helps her get through the rough times. I haven’t yet heard the plans for this round but nothing would surprise me.

Tuesday, June 28, 2005 4:15 PM CDT

Steve and Robyn returned from Houston on Father’s day afternoon just in time for us to celebrate. It was a good weekend all around and we had lots to be grateful for. Before leaving for their trip to Houston, I told Robyn of my concern for her dad. He’d had his regular medical check-up the week before and had lost another three pounds. Those of you who know Steve, know that he doesn’t have 3 pounds to spare. Robyn said that I was not worry, she’d take care of that. While in the hospital she requested lots of snacks, but ate only a few of them. She then insisted that her dad eat what remained, “so they wouldn’t be wasted”. When they got home, it looked like Steve had put on a little weight; and looked better than when he’d left. Yep, Rob took good care of her dad while they were in Houston.

Robyn has been wanting to bring some of her teammates to Holly Beach for them to experience the flavor of Cajun recreation. I was very reluctant about her health and safety in that environment. The mosquitoes, alligators, crabs, and water condition of the ‘Cajun Riviera’ were a big concern. Once we came to an agreement regarding a lot of safety precautions, she began preparing for the trip. We planned and packed for salt water fishing and crabbing. Jackie and Karl Bernard and David came with us. Danielle, Tara, Suzi, Chelsea, and Christine were with Robyn. We left Friday evening for a two night stay. Our cabins were “interesting”. The girls had to purchase out-of-state fishing licenses at a cost of $20 for each of their one day passes. We wanted them to get the most out of their day, so our crab lines were in the water before 4:15 Saturday morning. After lunch, we went to the jetties in Cameron to do some salt water fishing. Later in the evening Steve, David, and the girls went crabbing again. Our day’s catch included 9 dozen crabs and one 22 inch red fish. The girls were loads of fun; we laughed with them the entire time. We returned home Sunday afternoon completely exhausted but happy.

Round 10 is scheduled for next week. Robyn will see Dr. Benjamin at MDA next Tuesday. We’re hoping that her treatment will still be administered in Baton Rouge as planned. Dr. McCannless and his staff in Baton Rouge have been fantastic. They are the reason Robyn can be home between treatments and why she has the opportunity to get some of them at home.

Thursday, June 16, 2005 3:59 PM CDT

We've had some good news! Robyn’s spine and right hip did not show any evidence of tumors. The sacral and left hip tumors are both smaller in size. The next plan is to complete another round of the double dose Ifosfamide at MDA Hospital then to follow with another three rounds of another chemo drug. Neither Robyn nor Steve could answer my questions about the new drug (I should have sent them with a recorder). Another bit of good news is that the next three treatments can be administered in Baton Rouge. Rob was really happy about that. Her doctor, Dr. Benjamin will continue to re-evaluate her after every two rounds. He will also meet with radiologists to develop a plan for radiation therapy. Those treatments will have to be done at MDA. I spoke with Steve and Robyn last night. It sounds as if Steve is being a “good nurse.” Thank you all for keeping Robyn in your prayers; the test results are evidence of THE POWER OF PRAYER.

Monday, June 13, 2005 3:16 PM CDT

Robyn’s counts were good enough for her to go to Pensacola. She joined the group a week ago Monday and together they celebrated Tara and Danielle’s birthdays. She said they had lots of fun, however she missed being able to swim. Well, it’s already time to start round nine. Today Keeli will go with Robyn to Houston for the imaging studies. Tomorrow Rob will see Dr. Benjamin, then she will be admitted into the hospital for her chemotherapy. Steve will go with her this time. It is Father’s day Sunday and he wanted to spend some time with her. I’ve been trying to give him crash courses in nursing and will send him with instructions and a list. He’s a quick study so I’m sure he will do well. I’m certain of one thing, he will be much more entertaining and a nice change for Robyn (and the staff nurses). We’re still praying for good test results.

Wednesday, June 1, 2005 10:11 AM CDT

We returned home from M.D. Anderson Hospital late Saturday afternoon. The holiday traffic was a nightmare. Well, another round down and God only knows how many more to go. This was an extremely difficult trip for me. On Tuesday we went to the gift shop to purchase an extended stay parking ticket. Then we visited the Cyber Center to check out a video. While we were there, we opened our email. We had a lot of things with us and I was pushing Robyn in a wheelchair. I brought my purse with me to buy the parking pass then forgot it besides my chair at the computer. The volunteers who run the center are not allowed to open wallets or purses so the worker brought it down to security on his way out. It was returned to me empty of all cash. Luckily I wasn’t carrying a lot of money although it was more than I usually have. On top of everything else going on, the worry I had regarding credit card number and identity theft had me feeling really down and out. I wasn’t very good company. Laura Klatter came by to visit on her way to San Antonio. She was playing in a soccer tournament then had plans for a tubing trip with Justin. Laura stayed with Rob Friday night. I appreciated the good night of sleep I had at the Mark’s home. Steve is planning to go with Robyn for the next round. He thinks I need a break. I’ll have to think about that one for a while, although it would probably be a good change for Rob. Danielle and Tara will be celebrating their birthdays next week. Robyn is hoping that her blood counts will be good and she can join the group for a weekend trip to Pensacola. Her next round (Round nine) will begin the second week in June. The doctor has scheduled imaging studies to see how effective the high dose Ifosfamide has been before he determines the next course of treatment. Please pray for good results.

Tuesday, May 24, 2005 6:37 PM CDT

Round 8 was scheduled for Thursday May 19th. Robyn saw her doctor on that afternoon but was congested and running a slight fever. The round was postponed to give her more time to recuperate. She was admitted yesterday evening and the chemo was started at midnight. They are doing another round of the double-dose Ifosfamide and therefore she was admitted into the hospital. This was one of the few trips to Houston when my passenger was awake to keep me company. Robyn returned from the Florida Senior trip on Wednesday. She plans to update the photo album with pictures from the trip when she returns home. It was bittersweet. Everyone had a great time but knowing it had to come to an end with several of seniors going their separate way made it hard. I had a heavy heart as well. On Wednesday Rob did a photo shoot for a Dallas newspaper. It seems that Marcus Spears was spotted wearing a purple bracelet in support of Robyn and her battle. A reporter asked him if the bracelet had any significance and he told them of her story. Marcus was a first round NFL draft choice but more importantly, he is a very Christian young man who has been an inspiration to us. It is so typical of this young man to talk about someone else when reporters are hot on his trail to get a story about him. He is really special and we wish him all the best.

Monday, May 16, 2005 3:49 PM CDT

David’s graduation was really nice. I tried to inconspicuously check the commencement program for his name among the list of mechanical engineering graduates. Robyn, who was sitting besides me, quietly whispered, “It’s there Momma.” In spite of graduation rules and regulations, the very first thing Dave did after accepting his diploma on stage was to acknowledge his sister. Robyn was up front taking his picture when he sent her a symbolic kiss to his fingertips and with a bow of his head, he revealed the broad white number-109 on the top of his cap. It was very touching. The backyard party was a huge success. I’m not sure who had more fun, the graduates or their parents. The festivities ended with Robyn trying to teach me and Jackie the latest dance moves. We’d like to thank everyone who came by to help us celebrate. Robyn left for New Orleans after the party. Each spring LSU Soccer has a banquet and the senior players are honored. There was a change in coaching staff this year and consequently, no banquet for the seniors. George and Danielle Fotopolas chose to honor their seniors in a special way. They sent airline tickets for them to travel to Tampa Florida where he is now coaching. They will be there until Wednesday and he has plans for each day of their visit. I tried to talk with Robyn this morning but was quickly dismissed so that she could continue videoing the girls while they were tubing. She did mention, however, that she had caught a few nice fish yesterday. When I asked her how she was doing, she replied, “awesome.”

Tuesday, May 10, 2005 3:50 PM CDT

David is graduating on Saturday! He didn’t want me to update the journal until all his grades were official. He completed 21 hours of academic study; was team leader of his group’s senior engineering project; worked part-time; stayed with Robyn for some of her weekend treatments in Houston and was still able to complete his final senior semester with a 3.3 average. We just couldn’t be prouder! On Saturday, together with Jackie and Karl Bernard, we are having a backyard party to honor David and Lukas . Robyn’s counts have been good and she is looking forward to her brother’s special day. The party will begin Saturday afternoon at 5:00. We welcome family and friends to come by and share in our happiness.

Tuesday, May 3, 2005 4:31 PM CDT

Well, wouldn’t you know it; Robyn achieved her goal (again). Sunday was her fifth day and by 2:15 we were on our way out of the hospital. We left in a hurry. Both of us felt as if we were breaking out and we didn't want anyone to cut us off at the pass! To meet the discharge criteria, Rob had to be able to drink and hold more than two liters of fluid a day. Then the IV that had been delivering more than 8 ounces hourly was disconnected. The frequent pit stops made the ride home a long one but that didn’t matter-we were going home. This latest treatment has resulted in the loss of eye lashes and eye brows. Tara told Rob not to worry, they would have fun drawing some in. When I left Baton Rouge yesterday evening they were trying to decide on a good color and shape. There’s no telling what they will come up with. Plans are underway to celebrate David's upcoming graduation from UL-Lafayette's College of Engineering. We hope that our family and friends can come by to join us. We'll post the details later.

Saturday, April 30, 2005 12:32 AM CDT

A quick message because I'm at the nurses' station using their computer. For those of you who were asking about Robyn's Fox story, it airs today and all this week on a program called Sports Across America on Fox Sports Network (FSN). The doctor said that we may possibly go home Monday. Rob is still hoping to leave tomorrow and I want what is best for her. Who knows, she may be successful. She and David just came back from the rec. room--Rob with a big smile, "I beat David at a game of pool". His response, "So, it was only by one ball". "A win is a win".

Thursday, April 28, 2005 11:56 AM CDT

I don't have much time, but I did want to send a brief update. Robyn saw Dr. Benjamin Tuesday afternoon. The labs were all okay and good to go for round seven. The plan didn't change, still a double dose of the chemo drug-Ifosfamide. He informed us that her hospital stay would be about a week to 10 days. We didn't think the hospitalization would be that long, so the news came as a surprise. Rob was admitted to the 9th floor Tuesday afternoon and they started lots of fluids and the chemo that night. Their main concern is to protect her kidneys since the double dose is particularly hard on them. I told her that her IV pole looked like a cow's utters-there were at least six bags hanging on a double pole; that didn't amuse her. Rob is in the bathroom at least every two hours-a very good sign that her kidneys are working well. The tests to monitor kidney function have been good, too. She is trying to drink lots of fluids because her goal is leave in five days-on Sunday. Dr. Benjamin told us he would not be surprised at all based upon her past record of going home early. David is presenting his senior engineering project this afternoon. Steve and Amber will be there to see it and Amber will video it for us. I hope Dave knows that we will be with him in spirit.

Wednesday, April 20, 2005 10:03 PM CDT

We arrived at MDACC Monday morning. Blood work, a chest x-ray and the MRI evaluation process began. The diagnostic tests were finished by 1:30 leaving the afternoon and evening free to attend the Astros baseball game at the Minute Maid Complex. Robyn, Danielle, Keeli, Ryan and Chris were all guests of Patti Smith and Fox Sports. Isn't it funny how things happen? This particular match-up, the Astros and Braves has sentimental significance for Rob. Her grandfather, Poppa Landry was a HUGE Astros fan and his sister Jackie, an equally avid Braves fan. When the two of them were together for an Astros-Brave game, the room was electrified (and loud) with enthusiasm. Although Poppa has passed away, we all vividly and fondly recall the sound of his voice as he shouted words of encouragement at the T.V. to his two of his favorite players Biggio and Bagwell. "Come on Biggio, you can do it," Poppa would holler. So, when Patti asked about her favorite Astro, without hesitation Rob said "Biggio." With an all-access pass, Rob and friends are on the field taking a picture with Biggio (and later Bagwell,too), then got autographs. She awakened me as soon as she returned from the game, "Momma, It was sooo AH Maz Ing! Poppa would have been so excited!" In my heart I already knew that he was. Rob can't wait for Aunt Jackie and Tara to see the picture she took with Atlanta Braves Manager, Bobby Cox. Tara is a from Georgia and a Braves fan too. The new home page photo is of Robyn and her new friend Patti Smith of Fox Sports Network. There are also new pictures in the journal photo album.
Tuesday there were more MRIs in the morning and neurological testing in the afternoon. The medications being used to treat Robyn have toxic effects on the nervous system so it, too is checked every two rounds; the results were good. Dr. Benjamin reviewed the blood work and MRI results with us in the afternoon. He indicated that there were no significant bone changes since the last MRIs. Most of her lab results were good, except for the platelet count; it was 58,000. One of the criteria for beginning chemo is a platelet count greater than 140,000. Chemo had to be postponed for a week. You should have seen the BIG smile that bit of news brought! Blood counts will be repeated on Thursday and again Monday. The platelet count should be acceptable by then. Robyn has another appointment on Tuesday with Dr. Benjamin to begin round seven. This round of chemotherapy will require hospitalization because Dr. Benjamin has decided on giving just Ifosfamide but at double the dose. Large doses of this drug have to be infused much slower and more cautiously. The good news, however, is that she got to come home. We weren't out of Texas before Rob was on the cell phone with Heather, letting her know that she will be able to attend the ‘Halfway to Halloween Costume Party' this weekend after all.

Tuesday, April 12, 2005 4:27 PM CDT

We’ve been back home for over a week now and things are back to “normal.” Robyn’s platelet and white blood cell counts took an early nosedive and she required a platelet transfusion on Thursday. Saturday Rob went to the LSU women’s soccer games during the day then videoed Mo’s wedding that evening. Sunday morning she was at Box Stadium to throw the honorary first pitch to start the LSU-South Carolina baseball game. Steve was on call so we couldn’t go but David and Ryan and the soccer team was there. We anxiously waited to hear if her pitch had reached the plate. It had, “no problem; piece of cake,” she tells us. Sunday night Robyn was back at Our Lady of the Lakes for three units of red blood cells. “No wonder I was feeling so tired,” she says. Monday afternoon it was back to the hospital for more platelets. Monday night she was a guest on the Sports Monday program with Lee Feinswog. When the interview was over, I got a phone call; “Guess who else was on the program? Take just one guess,” she commands me. Well, I needed more. “Give me a clue.” “Okay, he’s your very favorite LSU football player.” I knew immediately that it must have been Marcus Spears. You may remember reading his journal entries; they were very touching. Marcus will be in the NFL draft next week. We will be praying for his, and all the other LSU football players, success in the professional football league. Each player was wearing a purple sarcoma bracelet. This weekend Robyn will travel with the soccer team to Miami, Florida for a tournament. She is very excited about the trip, but even more excited about being with the team. The tournament is being held to support and raise awareness of breast cancer. Rob’s been invited to speak at the banquet. One final update. Fox reporter Patty Smith called to say that the sports story they did on Robyn a while back will be televised nationally at the end of the month. Patty also invited Robyn to go to the Houston Astros game Monday night where Fox Sports will do interviews and cover the game. I don’t know where Rob gets the energy to do everything she does. I do know that she is one determined Cajun girl!

Wednesday, March 30, 2005 12:57 AM CST

It was great to be home for Easter. In spite of the overcast weather, we all enjoyed a good, old-fashioned, Easter Sunday picnic. The afternoon was filled with games and these are the highlights: Danielle beat out Uncle Dwayne in the rope-jumping finals by skipping to 99 (was that a coincidence, or what?). Dwayne held his own especially when you consider that he was jumping in cowboy boots and was wearing a cowboy hat, which, by the way, never left his head! Robyn and Nanny Susan were the hula hoop finalists. Robyn won after keeping the hoop going for more than 2 ½ minutes. That hoop traveled almost the entire course of her body while she did the Pee Wee Herman and the moon-walk. It fell to the ground when she tried to act smart by twirling the hoop single legged! The musical chair competition for David and Amy's bunny cake was rough. Grandma was lucky not to break a hip when she got butted off her seat from both sides of the chair. As you may have guessed, that bunny cake went to B.R. The games ended with Nicole winning the Easter egg hunt, finding a grand total of 16 eggs. For lunch we had Karl’s special bar-b-qued ribs and chicken and Grandma’s stuffed turkey with all the trimmings and of course, carrot cake for dessert. It was a fun time and by the end of the day, it wasn’t only the turkey that was stuffed!

Yesterday Robyn saw the hematologist first. We were told that this is her last cycle of the experimental drug study. If you recall, Robyn participated in a study in which she received large, unapproved doses of medications which stimulates the bone marrow to produce more red and white blood cells. The study consisted of a 6 round course of the medications and as you know, this was Robyn’s sixth round. Both drugs are FDA approved at lower doses and she will continue to get these at the approved doses. Next, Robyn saw Dr. Benjamin, the oncologist. Dr. Benjamin was adamant when he said that he must pull out all the stops in treating Rob and that we should expect a long course of chemotherapy. Chemo drug choices will be made after each MRI evaluation which will be done before the next round of chemo. Since the drug choices may change she might be able to get some of her treatments in B.R. and others she will still need to get at MDA. Yesterday, I thought about the poem Footprints. Yesterday, there were only one set of footprints in the sand. Yet still, Robyn was able to find something positive to appreciate. When the doctor left and we were alone, she said, “Momma, it could be worse, we could still be in New York and not have our family and friends around us”.

Thursday, March 24, 2005 9:54 PM CST

Hey everyone, it’s Robyn here. I thought I would give Mom a break from the journal and add a little of my own spice, so I hope you don’t mind the guest writer. Just want to let you guys know that I’m doing great these days. I’m enjoying my extra five days that was given to me this round. Everyday I get a little more energy and stamina back so I have no doubt that round six will be a piece a cake. And here’s some more good news. For some odd (but God given) luck, I didn’t need a blood transfusion for the first time in the last four rounds. It came really close. My lowest count was 7.0 (and I get the transfusion when it drops below 7). So, you can say I was a little more than ecstatic because I didn’t have to spend an entire day in the hospital. I have been enjoying Baton Rouge. I went to the “Geaux Magazine” launch party tonight with other fellow LSU athletes and enjoyed some great Cajun food. I also attended an assembly at Cedar Crest Elementary today as they celebrated Easter. Thanks so much to Laura Klatter (Klatatat) for inviting me to visit with all the students. Artie Brown and Keeli Cahalan also came and enjoyed the outing as much as I did. It felt great as the students asked us questions about soccer and the college life. I find the curiosity of children so entertaining. I laugh every time they ask why I don’t have any hair. In spite of their parents “shhhh-ing” I welcome any of their questions (Mom tells me I used to be one of those kids and she was that parent “shhhh-ing”). It really made my day hanging out with those young students! We’re planning a big Easter Sunday BBQ for the teammates who can’t go home for Easter. I heard Mom and Dad are setting up the volleyball net, coordinating a balloon toss, and I heard something about potato sack races. I can’t wait! Mom and I leave Tuesday for M.D. Anderson, but I’ll be back home before you know it. I just want to extend a HUGE thank you on behalf of myself and the family for everyone’s thoughts and prayers. You guys mean the world to me and it’s you who are my inspiration and motivation. I love you all. I’ll see or talk to you soon. P.S. I added some new pictures because I have been told that it was time to add some new pictures. Check them out.

Wednesday, March 16, 2005 11:09 AM CST

Robyn is home in Baton Rouge and keeping a close eye on her blood counts. Tuesday morning Danielle brought her to the lab for blood work. The results indicated that she needed platelets. Tara brought Robyn to the hospital for her transfusion while the LSU gymnastic’s coach, D.D. Breaux, was downstairs giving platelets. Nicole kept Rob company in the hospital then brought her home. By the time I got the update, everything was over. Robyn’s Tiger family is awesome! The Fox Sports Network (FSN) will air Robyn’s story Thursday, March 17 on a program called SEC-TV. It will air at 6:30 p.m. EST and 5:30 p.m. CST. We received the schedule for round six of chemotherapy. It was supposed to begin March 24, the Thursday before Easter. However, they have decided to push the appointment back five days, to the Tuesday AFTER Easter. We are sooooo excited! Robyn gets two good weekends this round instead of just one and we get to have Easter at home. Another small victory to celebrate!

Friday, March 11, 2005 1:13 PM CST

We returned home from Houston Tuesday morning. The light at the end of the round five chemo tunnel was the airing of the Fox Sports story. Patti and Mike captured the essence of Robyn’s character and courage. It played Wednesday night around 10:30. David joined Robyn and her B.R. friends so that they could all watch it together. I apologize for not getting the broadcast information to you. It may air again later and if it does I will let you know the day and time. I am very grateful to Patti and Mike for the joy, excitement, and diversion the filming was for Rob before she had to face her 5th round of chemo. Before Wednesday, our favorite victory video was the Auburn game in the 2002 SEC tournament. Our new favorite victory video is the FSN story because it will serve to commemorate Robyn’s greatest victory of all.

Friday, March 4, 2005 1:46 PM CST

The news is great! “There is continued improvement”; words that were music to a mother’s heart! The doctor brought up the images on the computer screen and compared them with the previous set. The tumor in the right pelvis is “almost non-existent” and it is very likely that those in the spine are responding equally as well. The primary tumor in the left hip still has an area of “activity”. So the plan is to continue with the next two rounds of chemotherapy and follow with another scanning evaluation.

Mike and Patti with Fox Sports were with us the last couple of days to do a story. They were both so much fun to be around. Talking to Patti was as relaxed as having coffee with a neighbor. I hardly noticed that a camera was even around. Mike was a character. They bounced one-liners off each other all day. Most of you know Robyn’s love for taking pictures and recording videos. Last April, she videoed her cousin’s wedding. She loved every minute of doing it. She did all the editing and captions as well. It came out real well especially considering it was an amateur production. I had even suggested that she consider doing this as a career since she enjoyed it so much. What could be a better gift in life than to do a job you love doing? Well, needless to say, she had great fun doing the Fox story. It’s like Mike said in the guest book, she would have preferred talking about her friends, LSU, and soccer than about the cancer. I also know that she would have preferred being behind the camera instead of in front of it. The first day of receiving chemo usually makes Robyn feel anxious and uneasy-but not yesterday; she barely had time to think about it. She was completely distracted by the filming (Thanks Patti and Mike, you were awesome!). I, on the other hand, was very apprehensive about the idea. What came to my mind were mental pictures of news programs where Cajuns were interviewed after a hurricane or some other local event. I’d watch these stories and think ‘where did they find that character?’ It seemed that the person they’d always pick for their stories had no teeth, a heavy accent, and poor English. And now I was the Cajun character being interviewed. I worried that I would not be able to express myself well enough or be an embarrassment to my family. It’s very difficult to put feelings into words and even harder to wear your heart on your sleeve for others to see. I tried to communicate our gratitude for the constant support of family and friends. So, in case I failed, I want to tell you all, here and now, what a huge source of strength you have been for us. On so many occasions, when I’d speak or write of concerns, they were no sooner expressed before I’d receive a call or note indicating that the matter had been taken care of. You have lifted so many of our worries to enable our family to focus on Robyn’s care and to help her get through this. I don’t deserve the good family and friends that surround me but I thank God everyday that they do.

Tuesday, March 1, 2005 7:32 PM CST

We enjoyed Renee's performance at Grant Street on Friday night. Renee' and the band were awesome. We managed to stay out until almost 12:00. Quite a feat, since we're usually in bed before 10:00. We missed a couple of special guys we expected to see there. We later learned that both had given platelets at the St. Pius blood drive. It was after they had worked a full day and giving the platelets left them both feeling ‘drained' so they weren't able to make it. Thanks, Ryan and Lucas, we love ya'll! It was great to spend time with friends. It made the night special. Several of the Baton Rouge girls came with Robyn, and by the looks of that rockin' CRV, as they drove off, I'd say they had a very good time, too.

Robyn and friends left on a weekend road trip to Tampa, Florida after Grant Street Dance Hall. Keeli was celebrating a birthday and they didn't want to miss it. These were the two events which served as a light at the end of the chemo tunnel. Robyn says it really helps to have an occasion or event to focus on and look forward to, to help her get through each round.

Blood drive updates: Karen Quebedeaux reported a successful blood drive at the Baton Rouge Zoo. There were also huge responses at Louisiana Technical College and St. Pius Elementary School, both in Lafayette. Thank-you! Thank-you! Thank-you! For giving so generously.

Robyn has appointments for blood work, x-ray, MRI and CT scans on Wednesday. The oncologist will review the results with us at her appointment on Thursday. I try not to worry about the results, I know it is out of our hands, but as Wednesday approaches I can hardly think of anything else. I returned to work last week and keeping busy served as a good distraction, most of the time. Robyn says that we should not give up any of our time thinking about cancer or its treatment during her ‘good days'. As usual, she's right. We'll deal with all that on Thursday when she begins chemotherapy-round five. For now, please pray for good reports.

Monday, February 21, 2005 5:10 PM CST

Not much to update but as they say, no news is good news. We're still watching to see how low the blood counts will drop. Today the platelet count was 13,000 and Robyn went to Our Lady of the Lakes in Baton rouge for a platelet transfusion. The hemoglobin was 7.8. She will require blood transfusions, according to the MDA protocol, if it falls below 7.0. A type and cross-match was done this morning and there are a couple of units of packed red blood cells on standby in case they're needed. Robyn says that she won't need blood this time. She knows this because her body is telling her so. We'll see. This Friday, February 25 is the St. Pius School blood drive. It is from 11:00 to 4:00 in the Parish Life Center at 201 E. Bayou Parkway in Lafayette. The center is next door to the school. All blood donations are appreciated by Robyn and the many others who are in need blood and blood products. This weekend is Renee's performance at Grant Street Dance Hall. There is more information on the web site at www.grantstreetdancehall.com. It will be a challenge for Steve and I to stay up past 10:00 but we're going to give it a try and are really looking forward to it. Hope to see you there.

Wednesday, February 16, 2005 11:58 AM CST

Round four is done. The doctor said that we could go home when Robyn was feeling up to it. Well, on Monday afternoon, as soon as they disconnected the IV tubing, she said, "Let's get out of here." Yesterday, we had to get lab orders faxed to Lafayette General since they did not expect her to be home before Wednesday or Thursday.

Last weekend the LSU Athletic Department sponsored a talent show to raise funds to help with Rob's medical care. Robyn's friend Renee' Jolene, a professional singer, did a guest appearance and sang a song from her new CD entitled Return to Me which she dedicated to Robyn. Renee' will be performing at Grant Street Dance Hall in Lafayette on Friday, February 25th. The doors will open at 9:00 and her new CD will be available for purchase. Steve and I are planning to attend and hope that some of you can join us. The talent show competition was stiff and ended in a tie between gymnast Lisa Rennie and the soccer girls. The winner was declared by a tie breaker called a worm-off. Sara Pollock prevailed in the worm-off and the LSU Women's Soccer team won the competition! The girls called Rob as soon as the show was over. It was as if their energy and enthusiasm were transmitted through their cell phones to Rob. She immediately began to feel better as she shook with laughter. It came as no surprise to us that the girls had won....we know, however, that they are all WINNERS. Rob can't wait to get back to B.R. She wants to see the video of the performances she's heard so much about. I can't wait to hear all the stories the girls will have to tell! The photo album has been updated and you can see a picture of the winning performers. There is also a Mardi Gras picture and a candid ‘bug-eyes' shot with friends. You can use the links below to see pictures of Renee' and the other performers in the talent show. Keep checking back as I will put up a link for more info on Renee's upcoming performance at Grant Street Dance Hall. Hope to see you there.

Friday, February 11, 2005 7:19 PM CST

Round 4 of chemo began yesterday. I think we may have tackled the vomiting problem. The combination of a scopolamine patch behind the ear, an Emends tablet before each treatment, and motion sickness wristbands to each wrist seem to be working pretty well. Rob says that she still experiences waves of horrendous nausea; the meds just keep her from vomiting. I think that’s a huge improvement because she is keeping her fluids and electrolytes in her body where she needs them. The doctor visits went well. They have scheduled more imaging studies before the next round of chemo and the treatment plan will then be reevaluated. There are still a few details to iron out between the MDA and B.R. doctors so that the protocol is followed more precisely but those can be resolved easily. Yesterday and today have been difficult, Rob says she feels like “crap”. Steve and David are on their way to Houston. I’m very proud of Dave. He has been there for his sister since day one and whenever he can since then. He brings and does his schoolwork and job projects while he sits with his sister. It's touching to see the way he indulges her and so typical to see her take advantage of it (some things don't change). We’re family and we’ll get through this together as a family and the tremendous outpouring of love, support, and prayers from each of you certainly helps. Please know that you too are in our prayers.

Saturday, February 5, 2005 2:32 PM CST

Robyn saw her B.R. oncologist on Thursday. Hemoglobin and white blood cell counts are doing well. Her platelet count dropped on Wednesday but was acceptable so she did not require another transfusion and by Thursday morning there was an increase. Rob's doctor said that she can do whatever she feels like. So, after an exam and taking care of business on campus, she packed up to do exactly that. Friday evening she and a van filled with friends left for New Orleans to celebrate Mardi Gras. She might be feeling well but I'm having a heart attack here!

I'm a great-aunt again! Aimee and Brady had an 8 lbs. 9 oz. son-Baylan Jesse. There were 14 of us waiting to welcome him into the world and it was certainly worth the wait; he is just precious. Their little family is doing well.

Well, we'll be back in Houston for lab work, chest x-ray, and doctors appointments Thursday morning then its round four of chemotherapy Thursday evening. But, we won't give all that another thought until then because it is Mardi Gras weekend and we're home to enjoy it. Things don't get much better than this!

Tuesday, February 1, 2005 8:41 PM CST

We arrived home from Houston Wednesday evening. Robyn recuperated at home in Carencro until Sunday when lab tests indicated her need for blood transfusions. She was admitted as an outpatient at Our Lady of the Lakes (OLOL) Hospital in Baton Rouge and received two units of red blood cells. She didn't like seeing the blood drip into her central venous line, but very soon after it finished she felt better. On Monday it was back to the hospital for a platelet transfusion. When checking placement of the central line, the nurse was not able to aspirate blood. She asked Rob to lean forward; then to raise her right arm; then to hold her right arm over her head; and lastly she was asked to turn her head and cough. Well, that sure raised her eyebrows, but in the end it did the trick. After seeing a good blood return, they were able to start the transfusion. Today Rob was at LSU, wearing her mask since her white blood cells were almost nonexistent. She met with counselors and professors and said that her day on campus was very productive and she was able to accomplish a lot. Thank you for the many offers to donate blood on Robyn's behalf. Prior to this weekend, Rob had not yet received blood products, therefore she was not listed in the national blood registry, now she is. We were told that blood or platelets could be donated at any blood center and she would receive credit for them. Robyn will probably need blood and platelets after each chemotherapy round from now on. She will most likely receive them during the time she is home in Baton Rouge.LSU is having a blood drive this Wednesday and Thursday between 10:00 a.m and 4:00 p.m.The mobile blood units will be located on Tower Drive. Our family and friends in the Lafayette area can donate at United Blood Services. My niece, Aimee Guy, and the faculty and staff of St. Pius Catholic School will host a blood drive at the end of this month, donations can be made there also. If you're able to donate, be sure to mention that Robyn received her blood products at OLOL Hospital in Baton Rouge. Thanks everyone for sharing a most precious gift-the gift of blood. It will benefit Robyn and so many others.

Wednesday, January 26, 2005 9:12 PM CST

Monday we had to go back to the sarcoma clinic to clear up a chemo schedule discrepancy. Robyn not only wore her LSU cap, she also wore an LSU shirt and LSU sweats. Even though she wasn’t feeling very well, she was well enough to make a LSU statement to the Alabama nurse without speaking a word. Tuesday after the chemo completed, we were hoping to go home. But, because of a low potassium level, another 24 hour bag of IV fluids had to be added. So before leaving Houston we went visit Marion and Ricky. The trip was tiring for Rob but I’m really glad we made it. Father Vega and Sister Carrillo were visiting the Gilberts. Father officiated a mass then blessed their home. It was a beautiful ceremony and both Robyn and I experienced an exceptionally peaceful sleep that night. This morning it was back to MDA for more blood work and to disconnect the IV pump. Robyn will be followed by a B.R. oncologist who will care for her between chemo rounds. Round four will begin the Thursday after Mardi Gras. Finally, we left for home. It was like Robyn said, “Let’s hurry before they change their minds”. Rob’s low hemoglobin level causes her to be very short of breath and to tire easily however, on our way home she was able to muster up enough energy to walk into a Popeye’s’ that didn’t have a drive thru window! Later, she called her dad and brother to ask them to grill steaks for dinner. “To help raise my hemoglobin level”, she said. We’re back at home and the steaks were great! Our plans for the next week will be to monitor the lab results and wear the mask when the white blood cell count drops and to get platelet transfusions if the platelets drop. Robyn is enrolled for the spring semester at LSU and is bound and determined to graduate. Tonight Jackie and Karl came for a visit and David and Amy are at home. Robyn read us adorable letters and stories she received from school children. Laughter echoed throughout the house—gee, it’s good to be home.

Sunday, January 23, 2005 7:18 PM CST

I had plans to leave for Houston at 5:00 a.m. on Thursday but I had to wait for Robyn. She didn’t get home until 5:15! She squeezes out every single minute of home time. We stopped in Jennings so that I could see my brand-new great-nephew, D.J. I slipped into the ambulance entry of the E.R. and found my way to my Godchild, Kim’s room. The nurse brought D.J. in and I was able to hold him. He is just beautiful. Once we arrived at MDACC, Robyn went to the lab and then had a chest x-ray. Next, we then went up to the sarcoma unit for her doctor visit. A funny thing happened when the nurse greeted Robyn, she pointed at Rob's LSU cap and said “yuck”. Well, that was fighting words to Rob. She mumbled “jealous”, just loud enough for the nurse to hear. She then asked the nurse if she was an A&M or UT graduate. The nurse replied “no, try the other side of your state”. So after a couple of incorrect guesses, Rob was finally right when she said “Alabama”. The nurse then escorted us into the exam room. Before leaving, she said that she’d see us at the next visit, “hopefully without the cap”. Robyn then saw Dr. Benjamin, the oncologist. He reviewed her recent MRI’s and compared them with ones taken before chemotherapy. He brought the images up on his computer screen and pointed out the tumors, two in the pelvis, a smaller one on the right and a larger one on the left and two small ones on the spine. He reported that all have all tumors have responded favorably to treatment. In the doctor’s own words, “There is marked improvement”. Robyn, however, wanted him to be more specific, “how much smaller", she asked. "Can you give me a number"? He said the tumor could not be measured because of its character. However, he estimated that the tumor is approximately 1/3 of its previous size. With a big smile on his face he said, “I’m hopeful for a cure”. Chemotherapy treatments, however, will be extended”. The reason, he said, is that after radiation, some chemo drugs are no longer a treatment option. Therefore, all the aggressive chemo meds must be used before radiation. Rob wanted a time reference. He said “Be patient, we’ll have to wait to see how things progress”. That certainly is easier said than done. He agreed to let Robyn go home after chemo providing her oncologist from B.R. agrees to care for her while she is at home. We will be able to leave Houston once she has stopped vomiting, can drink two liters of fluid in a day, and can tolerate the ride. The B.R. oncologist will fax all lab results to her MDACC doctors who will advise treatment according to the protocol. We were told to expect blood and platelet transfusions this rounds since she had barely escaped them after round two. Bone marrow recovers more slowly with each subsequent round of chemo. Would those of you who donate blood, please consider doing so on Robyn’s behalf? Most blood banks only require a name, but you can further identify her as a sarcoma patient at MDACC. Let me know if they require more information. I can call and give the blood center any additional info they require. Your help would be greatly appreciated. Thursday night we stayed with Ricky and Marion. Trainer Steph (a former soccer trainer at LSU) was in the Houston area attending a conference. She now teaches on the university level. Steph spent Thursday evening with Robyn. The house was filled with laughter as they reminisced about LSU soccer days. Steph brought Robyn a gift. It was a knitted cap. Guess what kind of cap; an Alabama cap. Steph is teaching there. Wasn’t that ironic! Robyn started round three of chemo on Friday. This time she took a different medication for nausea, a medication called Emends. All I can say is Amen to Emends. She has vomited only once so far. Although, she still feels nauseous, tired, and very sick, at least she’s not throwing up. We were lucky to get a trial sample of Emends; maybe we’ll luck out and get another for the next time as well. At least we know that it works before we fill the prescription, we have so many bottles of medications that didn’t. On our way back from chemo, I mentioned to Rob that her dad, David, and Amy were coming. “Oh Boy”! She said, “comic relief is on the way”. We sure did need some comic relief. During the time that Rob is getting her chemo we have been staying with Phyllis and Mike Meche. They live in a beautiful condo less than 10 minutes from MDACC. Phyllis and I were childhood neighbors. Her family moved to Lafayette when I was in 8th grade. We also have a soccer connection, our sons all played soccer in Lafayette. What can I say....friends to the rescue again! Sorry it took me so long to update the journal. Chemo days are exhausting!

Wednesday, January 19, 2005 3:40 PM CST

We arrived in Carencro Friday evening at 6:30. Robyn could not wait to jump into her ‘pimped out ride' and head home to Baton Rouge. David and his girlfriend Amy added more LSU tiger decor and now her vehicle is ‘pimped' out to the max. It's a little over the top for me, but Robyn loved it! I find it reassuring when I am with Robyn because I can see for myself that she is all right. However, I respect her need to be in her natural environment and engaged in her usual routine, which certainly doesn't include her mama. The marathon birthday celebration started on Friday when Grandma made crayfish fettuccini for Robyn and her friends to have dinner together when she arrived in Baton Rouge. As you all know, the big party was on Saturday. It far exceeded Robyn's expectations, complete with a balloon arch that was higher than the roof. Steve and I went in the afternoon to prepare the food. Steve and David spent hours barbequing burgers, hotdogs, and chicken. Amy and I took care of the fixings, chili, chips and dip, and dessert. We left early, because as you all know, a college party doesn't really get started until well after 10:00 p.m., which is way past our bedtime. But, from what we've heard, the party was great (keep an eye on the photo albumn for party pics). Billy and Denny Guilbeau of Lafayette's Southside Bakery arrived with two birthday cakes, a king cake and a chocolate dobasche cake. Robyn's friends said that it was the best cake they'd ever tasted. I can assure you that they are right. I'd have a hard time picking my Southside favorite, their pastries or their hamburgers; they are the best in town. Sunday we had a baby shower for my Godchild Aimee Guy. I will be a great-aunt twice in less than a month. It will be wonderful to have babies in the family again. Margaret and Kent Rozas gave Robyn two sacks of live crayfish so that she could have her very favorite birthday meal, boiled crayfish. She was thrilled. Sunday evening, Steve and Robyn's uncle Dwayne boiled the crayfish and together with family and friends, she ate to her heart's content. The crayfish was delicious and a nice size especially so early in the season. Robyn's high school friend, Renee' Jolene played the guitar and sang for us. Renee' performs professionally. She is scheduled to appear at Lafayette's Grant Street Dance Hall on February 25. I'll let you know the details later. Thanks everyone for making Robyn's 23rd birthday so special. The only celebration that might top this one, is the one we'll have when we celebrate her cure. It is our last day at home, and we are frantically trying to catch up on matters that accumulated while we were gone. We will be leaving for Houston bright and early tomorrow morning. Rob has a full day of tests and medical appointments in preparation for round three of chemo which will begin on Friday. We will be staying with Phyllis and Michael Marks who live less than 10 minutes from the MDACC. We appreciate their kind offer of hospitality and plan to stay in their home on the days that Robyn is getting her chemo treatments. In closing, I wish my vocabulary would allow me to adequately express my feelings of gratitude to everyone. You all have done so much to ease our burden and words fail me. Our family is eternally grateful.

P.S. Thanks, Claire Hanks Terro for rearranging Robyn's medical appointments so that she could spend more time at home.

Friday, January 14, 2005 1:19 PM CST

THE PARTY IS ON! We’re coming home! Thanks for the prayers everyone. What was a frown, turned upside down when the friends arrived. There certainly was alot of laughter in the Gilbert house last evening. Thanks friends and thanks Ricky and Marion. We love you!

Thursday, January 13, 2005 10:54 AM CST

Yesterday’s lab results weren’t good enough to go home. WBC count was great 10.6, hemoglobin was low but acceptable at 8.4 (normal is 12-16) but the platelet count was 34,000 (normal is 140,000-440,000) and too low to go home. If the platelets drop to 15,000 she will need a platelet transfusion. The health concern with low platelet count is the risk for bleeding. When the nurse told her the disappointing news, Robyn questioned her options. I think she was actually considering leaving AMA (medical AWOL). She quickly dismissed the idea when the nurse practitioner very sternly informed her that if she left she would be fired as a patient. So, we went to the lab first thing this morning to see if the platelets are on an upward trend. Before getting out of the car Rob turned to say, “Okay, Mama give me your blood”. Not a wonder they won’t let me draw her blood, no telling what that girl would do to go home. Oh-Oh, I just got a call from the nurse with today’s lab results. Platelet count dropped again-31,000. We won’t be going home today. Robyn is sleeping and I really don’t want to be the one to tell her the news. She will be heartbroken. Well, as a wise friend said yesterday, if the platelet count wasn’t up then it must be God’s way of telling us we needed to be Houston. On to plan B. I think we need to be proactive, just as a watched pot is slow to boil; watched platelets are slow to rise. I’ll think we should go shopping or to a comedy movie. She needs to release a good dose of endorphins to the blood and we’ll pray for better results tomorrow.

P.S. Within 30 minutes of getting word about the lab results, the B.R. friends called to say they are on their way to Houston. Moments later, Marion tells Robyn, she and Ricky are trading rooms with her. They are surrendering their bedroom suite to Robyn and her friends and won't take no for an answer. It is UNBELIEVABLE. Robyn is completely surrounded by earthly angels!

Tuesday, January 11, 2005 9:17 PM CST

Monday Robyn spoke with her oncology nurse to discuss treatment concerns she is having. One of her questions was, “Are the number of treatments in the protocol ever reduced from four to less, like just two”. The nurse said she didn’t know where Robyn had gotten the impression that she was going to have four rounds of chemotherapy; the protocol for Ewing’s is six rounds. Spirits were a little down on Monday night. Yesterday, however, Heather Zurburg was here for a visit. She brought Rob two cute frogs; one that is carried piggyback. For those of you who don’t know, Robyn has been collecting frogs since she was a little girl. The acronym for FROG is to ‘Fully Rely on God’, and we certainly have been. Today while at MDACC Robyn spoke with another Ewing patient. He is 21 years old. He required 10 rounds of chemo treatments for his tumor. All of a sudden six didn’t seem so bad. Today one series of MRIs were done and tomorrow she will have another. The two series can’t be done on the same day. We will get those results next week when she sees the doctor on Thursday. Round three begins Friday January 21st. It sure seems that those chemo rounds get here quicker and quicker. Well, we’re not going to think about that right now. We have much bigger fish to fry—or should I say burgers to grill, for the B-day party. I told Robyn to try to keep a lid on her enthusiasm. What if the blood counts are still too low to go home, the disappointment would be major. She says the blood counts are up, she can just feel it. I asked her to keep her mind open to that possibility but she has warned me; tomorrow if the nurse says “no” to going home, there will be a fight. Robyn said this very seriously but with a twinkle in her eye and one raised brow (ya’ll know that look). Well, we’ll find out tomorrow afternoon, and then we’ll see just how fast those bird legs can move that Cajun girl out of the clinic and to the parking lot!

Sunday, January 9, 2005 9:39 PM CST

Steve and David arrived in Houston on Friday night. Ricky and Marion’s empty nest was certainly full this weekend. Yesterday morning I left to attend a baby shower for my Godchild, Kim. She is due to deliver a baby boy later this month. David and Ricky went to golf shops and the driving range all afternoon-Dave was in heaven. Steve and Robyn were on their own. Together they cooked spaghetti and meat sauce and Robyn felt well enough to help in the kitchen. Isn’t that odd; she never felt well enough to help me when I was in the kitchen? I heard that she started eating from the moment her eyes opened in the morning until the time they closed for bed. I guess she is making up for the lost intake of the past week. There is one thing I’m certain of, I am certain that she is on a mission. That mission is to be in B.R. and feeling her best, and no later than Wednesday. That’s because of the big birthday party friends are planning for Saturday. I wonder if these girls have any idea of the power and extent of their influence on Robyn’s health and recovery. The sisterhood that is created by athletics goes way beyond my comprehension…way, way, beyond. Although these girls do not share the same blood, they have shed some, together on the playing field, along with a lot of sweat and tears. I have witnessed the bond they share and stand in awe. I will be forever indebted to them and all of her friends (the Cro group, the paintball neighbors, the Starz family, and so many others) for the ‘good medicine’ that they are. Thanks for giving her a reason to get through round two of chemo with such determination and drive. You all are truly amazing! This morning Robyn went to the lab for blood work then to the chapel for mass. The red blood cell and hemoglobin values are better and she is no longer short of breath. As expected, the WBC count is down. The value this morning was 600; normal range is 4,000-11,000. So it’s back to wearing a mask and taking strict infection control precautions. She is scheduled for MRIs on Tuesday and Wednesday to assess the effectiveness of the chemotherapy----please keep her in your prayers.

P.S. Today she had Popeye’s for lunch, things really are getting back on track!

Thursday, January 6, 2005 2:53 PM CST

Tuesday night Robyn discussed concerns she had with the oncology nurse who was administering the last chemo infusions for round two. She wondered why other patients did not seem to have as much difficulty with their treatment as she was having. We watched other patients walk the halls, dine in the cafeteria, and attend mass all the while their chemo drugs infusing. Although these patients were in wheelchairs, they seemed to be much more energetic and handling it better. The nurse, in a very gentle tone said, “Honey, there are a lot of different chemotherapy drugs. You just happen to be on our most difficult chemo protocol”. I believe Rob was starting to feel like a ‘whimp’. Now those of us who know that spirited, impulsive, wild and crazy girl could describe her in many ways, but whimp would never be one of them. The nurse indicated that she thought Robyn was doing real well with her treatment and that was encouraging. Getting through the nausea and vomiting of Wednesday was a challenge but it is behind us now. The good part of hitting rock bottom is the knowledge that there is only one way from there-up! Blood counts must be dropping because she gets very short of breath with the slightest exertion. Either that or learning of the lsusports.net story and the uplifting messages it has generated has simply TAKEN HER BREATH AWAY! We are so deeply touched by the kind words of encouragement and prayers of so many. God Bless You All!

Wednesday, January 5, 2005 11:19 AM CST

Robyn completed her second round of chemo last night and started the 10-day course of antibiotics. After this morning's lab appointment, we will drive to the Woodlands to stay with Ricky and Marion. Last evening, while waiting for our appointment, Robyn was very nauseous so she asked me to apply lotion to her head. The lotion is Aveeda and was a gift from Christine and Jerry Butler. She loves the scent as well as the cooling and moisturizing effects it has on her scalp. I had begun a little ritual of making a wish each time I rubbed her baldhead, kind of like rubbing a Buda. Robyn informed me that you must rub the Buda’s stomach, not head, in order to make a wish. We both had a good laugh about it, each not wanting to concede the debate. Do you think we’re bored…or what???? Sarah, from Dallas, and her boyfriend Bobby are here visiting. I took the opportunity to come to the media room. Did you all see the new photos in the photo album? My brother and his family surprised Robyn by shaving their heads for our Christmas celebration. That was really sweet.

Monday, January 3, 2005 12:28 AM CST

Thursday’s doctor’s visit, x-ray, and lab results were all good. After leaving the medical center we did a little shopping. Robyn had a little Christmas money and just couldn’t wait to spend it. I had been battling sinus congestion since last weekend. On Monday while I was back home I went to the walk-in clinic. They gave me a Celestone injection and prescriptions for a decongestant and antibiotics. I was told to hold off on the antibiotics unless I started running a fever or the character of the drainage changed. As we were shopping, I started to feel bad so I checked my temperature and was running a fever. I dropped Robyn off at the Rotary House where Steve was waiting for her. I filled my prescription for antibiotics and returned to Ricky and Marion’s where I stayed for a couple of days. Rob and Steve were on their own; thank goodness he was here. They both did just fine. Day zero of chemo began Friday night. Robyn’s friend Alberto came to the hospital and was with her to ring in the New Year. On New Year’s Day Rob got her second doses of chemo. She is still having the same problem-nausea and vomiting. The Zofran doesn’t seem to be working at all. The nurse advised her to switch to a formula drug called ABH, which is compounded here at the MDACC. The biggest problem with ABH is that it is so sedating, but I suppose it’s better to be knocked out than to be awake and miserable. I plan to see the Nurse Practitioner today to check on an alternative to ABH. It is all trial and error until we find a winning combination. Saturday night, four friends from home came for an overnight visit. On Sunday morning the room was filled with party hats, Happy New Year Balloons, and five very sleepy girls. Sunday evening Alberto again visited while Rob got her chemo. She was out of it but managed an occasional smile anyway. I’d sure like to tell Alberto’s mom that she raise a really fine young gentleman. Round two of chemo will be completed late Tuesday night. We will leave the Rotary House Wednesday morning after Robyn’s lab appointment. We will stay at the Gilbert’s until we get the okay to return home. I sure hope we make it back in time for the birthday party. Happy New Year’s Everyone!!

Thursday, December 30, 2004 12:38 AM CST

On Tuesday Robyn saw Dr. Christopher McCanless, an oncologist in Baton Rouge. He will coordinate her care on a local level so that she can be home as much as possible between chemo treatments. He was very impressed with her condition, spirit, and attitude. He thought she looked great and told her so. He feels that she should continue getting her treatments at M.D.A.C.C. since she is having such good results. Her participation in the Neulasta and Aranesp pilot program has helped her blood counts return to normal very quickly. To continue receiving these drugs at the research dosages, she must get her treatments at M.D.A.C.C. We left home this morning to begin the second round of chemo. Although we were home for a week, we didn’t have near enough time to do everything we wanted to do. We had so many plans to visit with family and friends and before we knew it, our time home was over. We arrived in Houston at 10:00 this morning. Robyn had her blood work and chest x-ray done to prepare for tomorrow’s chemo treatments. She will see the doctor at 1:00 this afternoon. Tomorrow we will check into the Rotary House and she will begin her first chemo infusions on New Year’s Eve at 8:00 p.m. We will stay at the Rotary House until Wednesday, when she completes her second round. The lab results will be closely monitored again, so we will stay with the Gilberts until we get the o.k. to return home. Rob is pumped up for a quick rebound. She has plans to be in B.R. to celebrate her 23rd birthday. The B.R. girls are planning a B-Day bash for Saturday January 15th. Rob’s birthday is Monday the 17th and because of the M.L. King holiday, there are no classes. This will give everyone a couple of days to recuperate before the spring semester begins on Tuesday the 18th. Robyn is so excited; she can’t wait. She said that the party place would be well marked with a balloon arch!!

Saturday, December 25, 2004 8:39 AM CST

A VERY MERRY AND BLESSED CHRISTMAS TO EVERYONE!! We are celebrating our traditional Christmas at home! Last night we openend presents at Grandma's and this morning we will see what Santa brought as soon as Robyn wakes up. A very special thank-you to Jack Dugas and Jeff Landry, they are covering Steve's holiday call for the shop. We really appreciate being home and most of all being together.

Wednesday, December 22, 2004 10:24 PM CST

Great News! Yesterday when Robyn woke up, she said “I think my counts are up, I feel better”. She was right; the WBC count went up from 700 to 1,700. Today when she woke up she said, “My counts must be way up, my bones hurt”. Bone pain is a side effect of the medication she is getting to stimulate WBC production and she was right again. WBC count today was 7,200! The medical team has allowed her to be home for Christmas and she doesn’t have to return until Thursday when she will see the doctor and have pre-chemo. lab work and a chest x-ray. The second round of chemotherapy will begin on New Year’s Eve. I told her that she won’t be the only one nauseous and vomiting on that night! After a quick trip to MDACC to pick up some paperwork and receiving some strict guidelines we were on our way home. As Dorothy said to Toto, “There’s No Place Like Home”.

Monday, December 20, 2004 9:13 PM CST

We had a day off from lab work on Saturday and it was nice to sleep in. As expected, the counts have dropped. WBC count today is 700 and normal values are 4,000-11,000, platelet are at 74,000; normal values are 140,000-440,000. Robyn must now wear a mask when she is in a crowd and avoid people with infection, even one as minor as the common cold. Low platelets put her at risk for bleeding. I’ll have to warn Ryan Dwyer about that. He and Robyn always push and punch each other when they’re together. It stems back to being the only girl at Granny’s and always surrounded by boys. Consequently, she learned to defend herself at a very young age. Now as adults they still greet each other that way. I think it is probably exaggerated ‘love taps’ although I’m sure they would both deny it. Jordan, Holli, Danielle, and Keeli all came by to visit. Danielle and Keeli stayed over until this afternoon. This evening Alberto came by. He brought Rob a beautiful bouquet of daisies and a helium balloon with a sweet picture of a puppy on it. Alberto is a friend Robyn met at a street flood party when she lived in her first B.R. apartment. It was located in a flood zone and you know how those college students are, any excuse to throw a party. Alberto now works and lives in Houston. It is truly amazing how therapeutic visits from friends can be. I’ve enjoyed reading the holiday ‘remember whens’. Christmas is fast approaching and will be a ‘remember when’ before we know it, so make it a good one, we surely plan to! P.S. Robyn is at it again with the hair--she wants to do something outrageous and this time David has the scissors, gotta go.

Saturday, December 18, 2004 3:01 PM CST

Robyn had lab tests drawn Friday morning. We got the results in the afternoon. As expected, the counts are dropping. They gave us a day off from lab work today. Next lab work and doctor visit will be tomorrow. I was surprised about the Sunday morning doctor’s appointment but we were told that M.D.A. is a 24/7 health care facility. Now, we have to see how much they will drop. We have requested a quick trip home for Christmas Eve and Christmas Day, if Robyn feels up to it. On Wednesday the doctor will determine if that will be possible. In the meantime she is trying to regain her stamina. She tires very easily. The mornings are usually worse. When she awakens she reports felling like she has a “bad hangover”. Now how would she know how that feels? Her appetite has completely returned. At first all she wanted was Popeye’s fried chicken, now all she wants are eggs…….egg fried rice, eggs over easy, egg sandwiches, boiled eggs, you name it. We’re happy to see her eat. I only wish she would drink a little more. Steve and I were able to do a little Christmas shopping since David was here to be with Robyn. My shopping buddy is usually Rob, Steve tried hard, but it wasn’t the same. He doesn’t have the patience to bargain hunt the way we do. It won’t matter that there won’t be as many gifts as usual under the tree this year, we are together and that’s all that matters. Steve has to go back to Carencro today. Although he was somewhat annoying as a shopping buddy, we will surely miss him. Hopefully, we can be back at home with him for the Christmas holiday. The holidays are making us more sentimental and we have been reminiscing a lot. Would you please share your family’s favorite ‘remember when’ story with us?

Thursday, December 16, 2004 2:21 PM CST

Last chemo for this round completed on Tuesday evening. Isn’t it strange to begin chemotherapy administration at 8:00 p.m.? We thought so too. Luckily we were just a walk away from the Rotary House. Some days we made so many trips back and forth between the R.H. and M.D.A. that our legs ached. Yesterday we relocated to the Woodlands and are staying with our cousins Ricky and Marion. It feels right to be here with family. Ya’ll remember that Ricky is the one who helped Robyn with her “mullet project.” In case you couldn’t see the hairstyle (if you want to call it that) in the picture I can describe it. Billy Ray Cirrus wears one. Robyn’s mullet has a few “racing stripes” on the side. M.C. Hammer and Vanilla Ice both sported these dos. When she asked my opinion I couldn’t hold back. My reply was, “compared to this, bald may not be so bad”. I guess we’ll find that out at the end of the month. We got up at 5:00 this morning, drove to M.D.A. for lab work and were back at here for 7:15. Not bad considering we were in lab 30 minutes. I am trying to get approval to draw the blood myself and drive it to M.D.A. without Robyn having to take that ride each day. I discussed that option with the lab department and then with the nurse without any luck. I’ll check with the doctor at her next appointment and hopefully he will give the o.k. Since I haven’t drawn blood in awhile, I plan to practice on Steve and David first. They didn’t look too happy about that idea but they’ll get over it. Did I tell ya’ll that I passed my CVC skills practical! The nurse told Robyn, “Your mom did a really good job”. Steve watched me do the procedure. He took off one point for not doing it exactly like the video. Sounds familiar, huh? David arrived last night. Just as Larry Pearson and the entire crew at Tools International Corp., LA Technical College, and LSU have been, David’s employer too is very caring and very sympathetic about our family situation. He has allowed David to do his job from here. He works for an engineering firm and although we haven’t met the CPL-LEI family we know they are very special people! I’m still trying to force fluids into Robyn which is difficult since she get nauseous and vomits often. Fatigue is a big problem too. If anyone has ideas, we’d love to hear them.

Tuesday, December 14, 2004 0:22 AM CST

Sunday afternoon we all watched the NCAA Men’s soccer finals. David, Amy, Chelsea, Suzi, and Christine had to leave before it was over. They missed the game-deciding shoot-out. The Indiana Hoosiers won. We knew that would make Larry Pearson very happy. He feels about Indiana the way Robyn feels about LSU. Tonight Robyn completed Day 3 of chemotherapy. During and immediately after the last two treatments Rob has had a lot of nausea and vomiting. We went to the sarcoma clinic first thing Monday morning to speak with the nurse specialist to see what more could be done to minimize the problem. She then informed us that the Zofran, which was prescribed only on an as needed basis, should have been taken around the clock. I wonder why it wasn’t prescribed that way? The second nausea medication is to be used if the Zofran doesn’t help. However, it really knocks her out. Another side-effect is fatigue. Yesterday and today when she wasn’t in the clinic for testing or treatments, she was in bed. Her appetite is fair when she isn’t nauseous. Guess what she wanted to eat tonight? You guessed it-Popeye’s. After a dose of nausea med, she had a small piece of fried chicken. The dietician said the first concern is for adequate fluid intake, 2 to 3 liters of fluid everyday; second concern was for good quality nutrition; and third concern would be food intake of any kind—oh well, two out of three isn’t bad. We are still at the Rotary House Hotel. If all goes well, we may be going to stay with our family, the Gilberts, in the Woodlands. My cousin Ricky brought home additional mattresses from his camp “in case Robyn’s friends want to come visit”. Wasn’t that considerate. Well, tomorrow is my skills practical final. I have to perform catheter care on Rob’s CVC. I’d better get a good night’s sleep, I want to do my best. Take Care.

Saturday, December 11, 2004 9:16 PM CST

Last evening Robyn completed Day 0 chemo. Non-nursing people bear with me; I’m giving the details for my nurse friends. However, I believe you all will see how overwhelming an experience it was. First there was IV Zofran, a medication for nausea then Decadron, which is used to decrease some of the side effects of the chemo. and also to treat the cancer itself. The chemo drugs were Ifosfamide, Adriamycin, and Vincristine. An addition two bags of medications were infused to protect the heart, kidneys, and bladder from being damaged. Once all that was completed, around 12:30 a.m. or so, they sent us back to the hotel with a 2-liter bag of IV fluids regulated by a portable pump. We got a brief in-service on the pump and off we went. Last night, when friends called Robyn described the IV access as “two tubes coming out of my right boob”. After a few “yucks” from her friends I suggested she change the terminology to “below the collarbone”. This morning Rob woke up nauseated. She tried one of the prescription meds and it zonked her out for most of the day. About mid-day we all went to our central venous catheter (CVC) dressing change appointment. I passed part one of my practical and am scheduled for part two on Tuesday. Tonight is Day 1 Chemo. The appointment was for 6:30 p.m. We tried arriving early in hopes that it could be started early because we were expecting visitors. David, Amy, Chelsea, Suzi, and Hey Man all came over. We all have great hopes for successful treatment with the chemo but tonight she got the best medicine of all-her brother and friends! I am updating this journal as they stay with her in the hospital room. I think they have plans to redecorate the room with a banner. Before I left the hospital I went into the room to let Rob know that I would be back shortly. She wasn’t in the bed, Christine was and they all chuckled when they saw the expression on my face as I looked around for Robyn. I love those kids!

Friday, December 10, 2004 6:05 PM CST

3:00 a.m. today and we were 'on the road again'. As you know, Robyn wanted to go home before chemo. Now for those of you who don't know this, when she says "go home" she doesn't mean Carencro, she means B.R.---OUCH....that really hurts! Anywho, when she's happy-we're happy. We checked into the Rotary House hotel when we arrived at 7:00. Robyn rode here with Sarah who was on her way to Dallas for the semester break and really enjoyed her company. The hotel allowed us to check in early which was great because parking at the hotel is free. That is really unusual, since the garage fee everywhere else is about $10/day. The hotel is wonderful. They address all the needs of M.D. Anderson patients and have lots of amenities. Also, there is a skywalk which connects the hotel directly to the hospital. It is the nicest hotel that you'd never want to visit-if you know what I mean. But since we must be here, it is a great place to be. They started Rob's central venous line this morning. For my nurse friends, it is a right subclavian silastic catheter. Sarah stayed with her until she had completed all her appointments which was around noon. This gave Steve and I the opportunity to attend a mandatory catheter care class. They want to be sure that we care for the catheter, the M.D.Anderson way. That's fine with us, we want her to have the best care possible. We will take the practical exam in a few days. Tell the students that I will get a taste of what they go through when I will be on the other side of that evaluation clipboard. We are getting ready to leave for the first round of chemo. They call it "Day Zero", go figure. She is on the most intensive chemo. protocol offered here. The round will complete on day 4 (which is actually the 5th day of chemo.drugs) then antibiotics for the 10 days that follow and lab work almost everyday. Each chemo. cycle consist of a 21 day interval. She is schedule for the second cycle to begin on Dec. 30th. Tonight at 7:00 p.m. she gets her first dose. The infusions will be completed around 1:00 or 2:00 in the morning. She has her game face on, that intimating look she has for the really big games. I'll probable close my eyes....just like I do for those really big games. Keep us in your prayers and know that each of you will be in ours.

Wednesday, December 8, 2004 11:13 AM CST

We're here at the M.D.A.C.C. for still more appointments. Rob will be part of a research project which uses growth hormones to decrease the high risk time in which blood counts drop. Some of these drugs are in use now but not in this manner or at these dosages. Her comment was, "Just call be a laboratory rat". She is in the lab now having pre-chemo blood drawn. We hope to be heading back home this afternoon. I now feel that I must warn you all. You know how she has this thing about outrageous hair styles, especially for key games? Well, ya'll ain't seen nothin yet! She and her cousin Rickey were up late last night with their pre-chemo "hair project". I'm sure she will post pictures. Stay tuned.

Tuesday, December 7, 2004 1:40 PM CST

Our trip to Houston last night was grueling. The weather was horrible and visibility was about 100 feet. Many drivers had pulled off onto the shoulder, but not us or the 18 wheelers. The MRI's were uncomfortable for Rob and took a long time. They finished around 4:30. We spent the night at my cousin's house, Rickey and Marion Gilbert. They live in the Woodlands. We had a great home cooked meal and a very nice visit. We felt so at home, it was nice. Today was the appointment with Dr. Benjamin. He is trying to schedule central line placement for Thursday and hopes to begin Chemo Thursday evening. Once the chemo starts we will have to be here in Houston for at least a month. We are all ready to get the treatment going!!!

Thursday, December 2, 2004 4:41 PM CST

The pathology slides were hand delivered to Dr. Benjamin's office at M.D. Anderson's yesterday morning. A HUGE thank-you to Jan Ripple, Granny, and Grandma. Having the slides helped expedite Robyn's appointments. She has MRIs scheduled for Friday and Monday and sees the doctor again on Tuesday morning. We decided to drive home yesterday evening. Robyn had school matters to take care of at LSU and wants to be home as much as possible, so do we. We will again return home after the test on Friday, then its back on the road again Monday morning. We stopped for some Popeye's chicken on our way back. I swear, we will soon start growing feathers! We appreciate your continued support. You all are in our prayers.

Tuesday, November 30, 2004 2:52 PM CST

We checked into the Marriott very late. Robyn wanted to spend every possible moment with family and friends and so did we. The room here is REALLY awesome (so is the special someone who arranged it). M.D. Anderson requires the tissue slides from NY city before they will begin any treatment. They want their pathologist to study them and that may take several days. There is so much involved with getting tissue back that was yours in the first place. Jan, Shelley & Kate Ripple are still in NYC. One phone call to Jan Ripple and we were assured that she would not leave the city without the slides. We got a call about 10:30 this morning with a report that the "care package" was in safely in her hands! This evening Jan will shuttle the slides to Lafayette for a package pass-off to the Grandmas who will hotshot it to Steve who will meet them in Orange, Texas and return to Houston so that M. D. A will have them in the morning. The loving generosity of our friends and family never ceases to amaze us! Yesterday, my sister took the shoes off her feet and insisted I wear them because they were more comfortable than the ones on mine (Love you, Sis). A hotel shuttle van took us to M.D.A. in a maze of curves and turns, Steve regretted not having his G.P.S. Today more blood work and x-rays. Another M.R.I. on Friday and more next week. We hope to come home between tests unless the schedule changes. Funny, at the RMcD house Rob was one of the oldest and here, she is by far one of the youngest. We are so very anxious to get started with the treatments-so much red tape and so many hoops in the health care system. We are all very tired, running on only 3 to 4 hours sleep. We're fixin' to take a nap in the cozy queen-sized beds. Quite a difference from the singe mattress twin beds at the RMcD house, although we were so very greatful to be there. Take care and keep in touch. P.S. Rob says "we ridin' spinners, we ridin' spinners, they don't stop". I think that's an inside joke only the team will appreciate. She also adds, "Have fun studing for finals, hahaha".

Saturday, November 27, 2004 4:27 PM CST

Just back from a visit to Time Square. There was a fire at the Toys R Us store which added to the congestion of traffic, shoppers, and tourists. We met up with Kate Ripple who spent a little time with us. We are back at the RMcD house and will be packing up our things to get back home (for a day anyway). We'll get back in touch sometime next week. Take care and God bless you all.

Friday, November 26, 2004 4:33 PM CST

Yesterday after the parade Robyn rested up and awoke feeling a better. The NYPD sponsored a trip to the movies and we went. They shuttled us, in a police vehicle with lights and sirens, to a theater to see Christmas with the Kranks. The officer offered the use of the mic and one of the teenage girls took him up on it and sang out onto the streets of NY--"Bad boys, bad boys, what ya gonna do". The officer driver left the RMcD house, dropped off one load at the movies, went back to the RMcD house, picked up another load and was back in 7 minutes! Today we went back to Mt. Sinai hospital to sign all the necessary authorizations for the transfer of medical info. to M.D. Andersons for our appointment. It is amazing the number of hoops one has to jump through for all this. We had a late lunch and watch LSU whip Arkansas!!! Rob wears at least one article of LSU clothing everyday. Its amazing how that strikes up a conversation with LSU Alumni and Louisianians who are here in N.Y. Kate Ripple is visiting. She called Robyn and they are planning to meet for a visit and to do a little shopping together. This all happened when I was downstairs in the media room. When I went back up to our room, she and David had already left. I got the feeling they were trying to shake us, you think? We're going to do the laundry and start packing for our flight home on Sunday. We will barely have enough time to re-pack to leave again on Monday. Special thanks to a special person who took the burden of lodging off our shoulders so we could focus on the important matters ahead. Our love to him and all of you for all your help and prayers.

Thursday, November 25, 2004 3:32 PM CST

I forgot to tell you about our introductions to Dr. Rosen. He is the oncologist Rob saw yesterday. We were all crammed into an exam room with her when Dr Rosen entered. He asked his physician's assistant to relocate us to his office, which was larger. The doctor led the way, followed by the P.A., then Rob with Steve, David, and I right on her heels. As Dr. Rosen turn to us, he said "I guess this is Robyn. Who are all of you?" Steve begins, "I'm the father", Dave "I'm the son" and I (just couldn't help it) said, "I,m the Holy Spirit". I sure got "the eyes" from Rob on that one. Rob's back was really sore today. They obtained a piece of bone for diagnostic purposes and that is probably why she is so sore. Tomorrow the dressing can come off. We had made plans to try to go to the Macy's Thanksgiving Day parade but didn't think it wise for her to overdo. Since the Taxi had to drop us off a few blocks away due to street closures, Steve and David pushed her in a wheelchair. What a commotion that was! On several occasions, the 2 small front wheels jammed into cracks of the sidewalk and street. I just knew they would send her reeling foward, out of the chair, at any moment. We all made it back safe and sound, thank God. The RMcD house hosted a BIG Thanksgiving dinner, with all the trimmings. It wasn't the home-cooking we were used to, but it was great just the same. We hope that you all had a wonderful holiday. We are very thankful to all of you for your loving support and we are very greatful that our little family could be together for the holiday. Love you all. HAPPY THANKSGIVING!

Wednesday, November 24, 2004 3:09 PM CST

Yesterday and today were both difficulty days. It is Ewing Sarcoma and the opponent will be stiff competition. But hey, didn't #8 ranked LSU beat #1 ranked Auburn in the SEC soccer conference not so long ago? We are raging war against this enemy. It just doesn't know who it is dealing with. We saw a Dr.Rosen today and left feeling like we had seen the best of the best. Next stop M.D. Anderson in Houston, TX. We must be there on Tuesday 11-30 at 7:30 a.m. We are in the process of locating affordable lodging near the facility. I will check the website but if any of you have inside info. please pass it on. The RMcD house will not accept any patient over 18 years of age. Rob is sore today from the biopsy but handled it like the champ she is. I have to apologize to all my friends who wrote me at the hotmail address I gave. Apparently I had filtered out all incoming mail from anyone not in my address book. I didn't get any mail until Monday night when Robyn fixed the problem so I didn't receive any that were sent. I am so internet spastic!! In order to get everything in place for our medical appointment on Tuesday, Sean Eddy, from LSU, changed our flight home to Sunday. This will give us the time we need for the second leg of the race. Sean is the GREATEST and so are all of you!!!

Tuesday, November 23, 2004 2:19 PM CST

Still at Mt Sinai Hosp. Rob is in recovery. Surgery took 2 hours and she did well. We were able to visit briefly. She said her back felt sore and mumbled something about Keeli and a ref, it didn't make any sense to me. A little later she tried juice and a coke. It didn't stay down. She vomited alot but said it "wasn't a bad vomit", whatever that means. They are considering letting her leave later this afternoon if she continues doing well. She needed to go to the bathroom, refused the bed pan, and insisted on walking to the restroom which was across the R.R. I think they were very surprised that she could do so much so soon. I wasn't. Will try to send more info. later.

Monday, November 22, 2004 6:30 PM CST

Last evening while Robyn was in the media room she overheard a conversation from the playroom. "Girls never win". She leaned back on her chair, peered through the open doorway and asked, "what do you mean, girls never win". Apparently there was an ongoing in-house boys vs girls football competition. She asked if they needed another girl. They were very excited when she joined their team. It was a tough game, but the girls won, shrieking with joy in celebration, the way only 10 year old girls can. Today started early with pre-admission for tomorrow's surgery at Mount Sinai Hospital. The admissions clerk had been pulled from another department. The only other clerk completed three admissions and left for a break before we finished ours. Before all was said and done, Robyn had the mouse and was entering info. on the database herself. The anesthesia work-up followed. The anesthesiologist was a former goal-keeper for the city team. Needless to say, they got along well. The surgery will take 1 1/2 - 2 hours and she will be in the hospital at least two days. We will finally have a name for this tumor and its treatment can begin. I may not be able to answer the phone during the day tomorrow but will let you know how it went as soon as I can. Tonight we are having a Thanksgiving dinner at the RMcD house. We're getting to know some of the people staying here (at least the ones that can speak English). We had a wonderful phone call this afternoon, Steve and David are on their way and will be here before the surgery and will stay through the weekend. It will be great to have them here with us. Take care and keep us in your prayers, as you too will be in ours.

Sunday, November 21, 2004 4:31 PM CST

"Cousin Steph" Keating left this morning. She is going home, to FL. We sure will miss her. I will miss the trivial moments most. Like yesterday when she and Robyn were hailing a NYC taxi.....standing between the first and second lanes of traffic. And when both were on the computer and Robyn reached back to grab her backpack, leaning on the back of Steph's chair to do so when all you saw were arms and legs flying everywhere as they both hit the floor. Last night we went to dinner. The Wild Wolf had a $14.95 lobster dinner special. Robyn said it was the closest thing to crawfish and would have to do. Well, let me tell ya'll, you ain't seen nothin' till you see that cajun girl eat steamed lobster. Like a true cajun, nothing was wasted. This afternoon Robyn's friend Monet, a former LSU track star who is now attending Princeton, came to visit. She brought a friend with her, her name is Inger. Together we went to a deli for lunch then took the subway to China Town. Ya'll know how Robyn likes the French Quarters, well she found all kinds of random things in China Town that she JUSSST HAD TO HAVE. Gifts for friends and family back home and a few things for herself. Like a 'spinning' belt buckle. For the over-the-hill gang, its a belt buckle that kind of looks like the spinning hubcaps you see on expensive custom suv's. She had a monogram belt buckle done as well. (You LSU girls know how she is, when she finds something she likes, she gets the same thing in different colors). It's was great for Rob to see her old friend and for us to make a new one. I felt as if I'd been knowing both for a long time. There is a Popeye's not very far from the RMcD house. So tonight Rob had spicy fried chicken. We come all the way to NYC and look for things back home. Funny, isn't it. Thanks for signing the guest book. Please sign it each time you visit, even if its just to say 'Hi'. We can't wait to read the entries. Check the photos, too. They get updated as well. Robyn gets personal e-mail at her aol address. I don't get much. I sure would like to hear of the everyday happenings from my friends and family. What's going on at LTC? What's happening at T.I.C.? Karl and Jackie we can't wait for your famous B-B-Q ribs. Thanks all you guys for feeding Steve. Ya'll take care of him while we're away. If you guys have a chance, drop me a note at my hotmail address: conniedesormeaux@hotmail.com. Love you all!!!!

Saturday, November 20, 2004 3:15 PM CST

Another story about New Yorkers. Yesterday on our walk back from the imaging center, an older German lady tripped on the sidewalk. She fell forward full force, hitting her face against the sidewalk. We were about 20 yards away and heard the noise as she struck the concrete. About 12-15 people rushed to help her. We were across the street from a hospital and some of the responders were medical people. She was very frightened which worsened when she realized that her nose was bleeding. A New York woman of about the same age, kept reassuring and comforting her. She promised not to leave the German lady until all was o.k. We offered to notify the E.R. and go for a stretcher or wheelchair if she needed medical attention. The German Lady refused. She just wanted a little time to get over the ordeal. So you see, what they say about New Yorkers is so incorrect. They are very caring. We just returned from a visit to Ground Zero. It made me feel very sad. Something else that touched me, was the metal cross that resulted naturally from the destruction. Later, on our way back to the RMcD house, we learned more about the 9-11 events from the taxi driver. The entire city was closed off. All bridges were closed off to vehicles. He said how erie it was to see thousands of people flee the city on foot. A mass exodus. On a lighter note, I rode the subway for the first time. It was not a new experience for Robyn and Steph. I felt like a "senior" when a young man offer me his seat. Robyn wanted to shop in China Town. I saw a couple of young ladies at the subway who seemed to be very "at home". They were very approachable, so I asked for directions to China Town. They hesitated. Gave me the once over. Then in a brisk way, answered me. I wondered why their disposition had changed. It was later that it dawned on me. They were Asian and may have felt a bit insulted and I would chose to ask them for directions to China Town. We eventually chatted some more and I think they realized that I was just small town and in need of directions. We didn't make it there today but may go tomorrow. The girls sometime pretend not to know me (especially when I'm asking for directions). However, I'm not the one who asked to see 'the Pentagon' or the 'Sidewalk of the Stars'. We did some Christmas shopping. Robyn found all kinds of things that reminded her of people back home, which of course, she had to buy. I have no idea how we'll get all that stuff back home! But I must say, it was fun. Well, the girls are hungry (what's new, huh). We're going to try a local restaurant. Be sure to sign the guestbook. We love reading your notes. Did ya'll read Mrs. Williams note? We had a really good laugh on that one.

Friday, November 19, 2004 3:38 PM CST

We left the RMcD house at 1130 for another day of testing. There was an hour break in the testing procedures for us to have lunch. We went to a deli on Madison Avenue. I wanted a salad but didn't recognize half of the fixings. So I played it safe and ordered vegetable soup. Robyn enjoyed her salad. Just returning to the RMcD house. It is such a nice day we chose to walk back from the imaging center. The temperature is in the 60's with sunshine most of the day. Possibility of rain tomorrow and a cold front to follow. Rob hates the cold. Stephanie Keating, LSU soccer cousin, is living in Vermont now. She drove in today and met us at the imaging center. Robyn and Stephanie are checking the area and making plans to do a little sight-seeing this weekend. New York won't be the same. Stephanie wants to visit the building with "the lady that is holding the touch". She could not think of 'Statue of Liberty'. I'd like to see ground zero and Rob wants to shop in China town. I hope we can do it all. More tests on Monday. Mount Sinai(?)Hospital on Tuesday for biopsy.

Friday, November 19, 2004 8:50 AM CST

Robyn saw Dr. Sundaresan yesterday. His office is across from Central Park. It was reassuring to see the many plaques on his wall which recognized him as being among: Top Physicians in New York City, Top Physicians in New York, and Top Physicians in America. His office was modest, nothing fancy at all. To me he seemed to be the humanitarian type, in the profession for all the right reasons. He was serious and all business. He said that with proper treatment cure is possible. He also said that these tumors are often misdiagnosed and not treated correctly. Rob, however, is being treated by one of few who specialize in this area and know how to treat it. He and the pathologist examined the biospsy samples we brought with us from B.R. They could not identify the specific type of sarcoma from the samples. Identification is crucial since it affects the choice of treatment. Treatment will be either chemo first then surgery or surgery first. So, they will have to repeat the biopsy on Tuesday. Heck, at this rate, they may end up removing the tumor by biopsy procedures! Today will be another full day of testing. A bone scan and 2 more MRIs. We are staying at the Ronald McDonald House 405 E. 73rd Street NY, NY. We were told that New Yorkers were not especially friendly. We have not found that to be the case. We discovered a market near the RMcD house and bought fresh fruit, rotisserie chicken and corn on the cob for supper last night. It was pretty good. We're still learning the ropes. Rob loves hearing from all of you. Keep the e-mails and text messages coming. We love hearing from you all.

Friday, November 19, 2004 8:17 AM CST

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