Timothy Isaac Mays
Date of Birth: March 23, 1980
Diagnosed: Desmoplastic Small Round Cell Tumor (DSRCT) August 1997 at age 17.
Died at home: May 26, 1998 at age 18 from secondary AML ( Leukemia)
Written by Tim's mom, with encouragement from Tim's granny, Christine Mays, in hopes that it may help someone else on their journey with cancer. Remembering each case is unique to the individual but medically some things are the same. It helped me to read stories from other Desmoplastic cases and I hope this will help you in some way. It is important to realize that there were many in the community that supported us through this time. Community, fellowship and humor are some of the best healing medicines that we can have.
BRIEF UPDATE 5/19/98:
A secondary cancer was diagnosed on April 16, 1998, Acute Myeloid Leukemia (AML). We were only eight months into treatment for DSRCT. This leukemia is more than likely caused from the high dose of chemo used in treating the Desmoplastic tumor. To our knowledge there are no other cases of leukemia developing during treatment of DSRCT.
EARLY SIGNS: July 1997 Back and side hurting, fatigue, weight loss, irregular bowels
Note: (the weight loss & irregular bowels were not evident until later as possible symptoms)
Tim had complained of his lower back hurting off and on since early in the year. He had been on a ski trip and had taken a big fall while snowboarding. He seemed to be fine later on but still complained every now an then. He also complained of being tired all the time.
Around July 20th of 1997, Tim started complaining of his side hurting. It lasted a couple of days and then subsided. During one of his hockey games, Tim was accidentally hit by a hockey stick in his side. Being in the middle of summer and playing roller hockey, we could justify the aches, pains, and tiredness. The pain returned around Aug. 8th a little more severe than before. After a few days the pain didn't subside but seemed to be getting worse. Senior High Band camp had just started and it became difficult for Tim to lift his tuba, let alone try to march with it. Our family physician was called on Aug. 12th and they had him in the office the same day.
DIAGNOSED: August 1997
On August 12th, our family physicians examination brought concerns that led to x-rays and lab test. He made us an appointment with a physician in Ft.Worth for further examination. On the 13th an endoscope examination revealed a rock hard mass in the pelvis and lower abdominal area. On the 14th a CT scan revealed the wide spread of tumors covering his whole abdominal area. Organs were affected including the liver.
On the 15th he was admitted at Harris Methodist Hospital for further testing. A needle biopsy was taken and Tim was diagnosed with having Rhabomyoscarcoma. We were given a choice to either have treatment at MD Anderson in Houston or Cook Children's Hospital in Ft. Worth. MD Anderson would treat Tim as an adult and Cook's would treat him as a pediatric patient. We choose to go with Cook Children's Hospital.
Tim was transferred from Harris Methodist hospital to Cook Children's hospital on August 17th. We were greeted by friendly nurses who helped us get settled in Tim's room. We met with Dr. Jeffrey Murray to discuss Tim's condition. Tim is an active participant in his treatment plan and knows that he has a life threatening cancer. Dr. Murray expressed his concern about the diagnosis. He wanted to take a large sample of the tumor and at the same time install dual ports for Tim's upcoming treatments. This surgery took place on August 19th. Our lives seemed to have been snatched away from what you might call the norm. All of the sudden getting ready for Tim's senior year in high school was the last thing from our minds.
On the 18th all of Tim's friends were starting back to school and Tim was starting to learn life's hardest lesson. The struggle of survival and the appreciation for each new day.
After the results from the tumor sample, Dr. Murray further diagnosed Tim's cancer as being Desmoplastic Small Round Cell Tumor (DSRCT). We were told that this is a very rare disease and that cases and survivors are few. Dr. Murray explained that a physician in New York City, Dr. Brian Kushner, was part of a team who is working with DSRCT patients. P6 protocol, is an aggressive regiment of high dose chemotherapy, debulking of tumors, more chemotherapy, stem cell harvest, more chemotherapy, stem cell rescue, and finally radiation. The out look seemed grim, but no other choices were given.
Tim started out putting his faith and trust in the Lord. We prayed and ask for guidance, strength and courage for the days, months, years to come. We want answers to questions that have no answers. Why me Lord? Why my son? What caused him to have this very rare cancer? We'll will probably never know, but one thing we do know is that we have power in the name of Jesus and we put our faith and trust in him. In all things, even cancer, we can know we are not alone.
FIRST TREATMENT: August 22, 1997 HD CAV chemotherapy
A 72 hours non-stop aggressive chemotherapy was administered. I didn't know how much I would come to appreciate the dual ports that was inserted into Tim's upper chest until I saw exactly what they do to administer chemo.
I don't think anyone could have prepared us enough for the weeks following this first chemo treatment. The fevers, cold sweats, upset stomach. On or about the 4th day after chemo his abdominal area began to swell. This became very serious to the point that his lungs were being crushed.
Tim was moved to a larger room called the Suite on 3-North. I felt that they knew things might get serious and wanted us to be as comfortable as possible during this period. Dr. Murray was concerned that Tim would not make it and we discussed him being admitted into the ICU if conditions didn't improve. He was first put on a breathing tube over his nose to help with oxygen and later a mask was put on to help him breath.
Things were not going well at all. Our ministers, Rev. Jon Mac Taylor and Mark Bushor along with Tim's mom and dad and his two older brothers, John and Joe conducted a healing service and laying on of hands at Tim's bed side. We had Holy Communion together and Tim was anointed with oil. We felt a peace about us that was very comforting to all.
After the service, Tim called his family to his side and wanted to talk about the possibility of his death. He asked each one of us how we would feel if he should go and be with the Lord tonight. We all expressed our love for him and knew at this moment it was between him and the Lord.
Dr. Murray came in and said that this is the time that medically he should be sent to ICU to be put on a respirator. He told Tim that he didn't think he would be here in the morning if he didn't go. School friends, church friends, and family members were waiting outside his door. Tim said there was no way he was going to ICU and that he would see Dr. Murray in the morning.
Tim's friends and family were allowed to come in 2 at a time as long as he was able to handle it. This went on for hours. Tim made it through the night to the next day. Remarkably he was able to remove the oxygen by that evening. He had moved the breathing tube up on his forehead and Dr. Murray said he obviously doesn't need it anymore. We laughed with joy at his quick recovery. Tim's spirit was encouraging to all of us. Over the next 9 days we watched the swelling in his abdominal area cease.
ANGEL PINS - Tim's way of saying Thank You.
Tim expressed a desire to give something to his nurses that so carefully and patiently cared for him. We just so happen to have a box of small angel pins that were made for another occasion that for some reason didn't get to where they needed to be on time. I suggested the angel pins and Tim's eyes brighten of the thought of giving each nurse a pin. He started out with about 40 silver pins and 20 small lapel angel pins. After months of treatments he eventually gave them all out. We have since then purchased more pins and today he has given out more than 75 angel pins to nurses, nurse practitioners, nurses aids, doctors, surgeons & ministers. Some of the nurses call him the "Angel Boy".
By September 11, 1997, Tim was sent home for a break from hospital life before the next treatment. Yes, we believe in miracles. We all feel that Tim's life was spared through prayer, communion and laying on of hands. The night Tim called his family by his bedside, he shared with us that he was unaware of what took place. He did remember that he told Dr. Murray he would see him in the morning and he knew without a doubt that he would.
Tim's goal was to get home in time to attend his school's pep rally on Friday and he made it. On Friday afternoon just before the pep rally began Tim showed up at the band hall. He was greeted by his band director, Mr. Reed. Everyone was very happy to see him and Tim went into the gym with the band members and sat with them.
The principal, Mr. Ripple, had Tim come out with him in the middle of the gym. He made an announcement to the football players that Tim was tougher than any football player in the school. Tim received a standing applause. Rumor had it that Tim might show up at school and a banner had been made and was hung in his honor welcoming him to school that day.
This was the first time that Tim had been out in public in a wheel chair and I was very proud of how well he handled himself. His classmates were very helpful in helping him get to where he needed to be. They were not bothered by the wheelchair, they were just excited to see him again.
The Tuba Corps, of which Tim had been a member, gave him their mascot to keep during the school year. The mascot is a small stuffed monkey that looks like Curious George. Tim decided to sit him on his IV pole as a reminder of his band friends. This monkey has been on every IV pole since then and even traveled to New York each time for surgery. It could represent "having a monkey on your back (referring to the IV pole)" but to Tim it represents the support of his tuba friends.
It was at this time that I realized how important it will be to let Tim do the things he can. Even though my motherly instinct was to protect him and not let him over exert himself. I realized that being able to be with his friends and doing the things he wanted to do were very much a part of his well being. It gave him encouragement and a goal to accomplish. He looked forward to activities coming up that he could possibly attend. It also became evident later on that his friends needed his involvement in their lives and activities as well.
SECOND TREATMENT: September 15, 1997 HD CAV chemotherapy
Another 72 hour chemo: Now you would think after the first treatment we would all be just a little worried. Of course we were, but we know we must go on and fight hard. Tim was receiving cards of encouragement from all over the world. His youth director contacted other youth directors via the Internet asking for prayers for Tim. The response was overwhelming.
Tim received letters from church groups all over the U.S. and beyond. They don't know Tim and have never met or probably never will meet him, but they are praying for him. It has been amazing how many churches have him on their prayer list. Through pastor to pastor, from member to other members, and family to friends the message has been spread to pray for Tim.
Tim's granny has faithfully lifted him up in prayer at 5:00 a.m. every morning. Uncle Brian in England said his church conducted a healing service for him. People have told me that before Tim's illness they didn't pray very much, but a burden has been placed on their hearts to pray for him and their prayer life has been renewed. The few times I have been back to our home town and have been in the bank or pharmacy they recognize the name and ask if my son is the one their praying for in their church. I have never witnessed such an outpouring of Christian support and prayer. Tim's positive outlook on life and a joy in making others feel better is a gift that he possesses and shares with others. Now we must go on for the battle is not over.
He was in the hospital for 5 days and sent home on Friday. Nothing eventful over the weekend after just having chemo. By Monday, September 22nd, he was admitted back at Cook Children's Hospital due to high fever. Tim needed blood transfusions and platelets off and on for a week and the fever continued. They suspected an infection of some nature. He was experiencing a bad case of diarrhea. A sonogram indicated a possible blockage in the small intestines.
SURGERY: October 3, 1997 Investigate Intestinal Blockage
At this time Tim's weight had dropped from 160 lbs. to 130 lbs. His stomach was somewhat extended possibly from the blockage. The surgeon estimated the surgery might take about 45 minutes to an hour. As we waited and continued to pray for him the hours seem to pass by slowly. After 3 hours passed we began to anticipate the surgeon coming in to let us know how it went. After the 4th hour passed we began to be more concerned and by the 5th hour even more so. A little over 5 hours the operation was finished.
This surgery was nothing like the surgeon had expected. He was not prepared to see what he saw. A large mass of tumor covering the lower abdominal area and the tumor wrapped around and infiltrated part of the small intestine. It was all he could do to cut away the tumor blockage and get him put back together. The tumors were so massive that the only way to connect the small intestine was to perform an Illeostopy. The tumor had blocked the way to the colon and he didn't have a choice.
Tim didn't like the thought of being in ICU. He only stayed there for 4 hours before he asked to be taken to his room. Dr. Murray honored his request and he stayed in the hospital until October 13th.
It is hard watching your child go through chemo and surgery and now he has part of his lower intestine attached to the outside of his lower abdominal. I keep asking myself how much more can he take? We learned how to attach and change bags that would hold whatever moved through his intestine. This was uncomfortable to Tim at first and was embarrassed for anyone to know about it. After awhile we began to feel more confident that this was a workable deal and that the alternative would have been worse. Tim hung on to the words of his surgeon that the Illeostopy could be reversed possibly during the next surgery.
After the stitches were removed from surgery, Tim was released to go home for a few days before the next treatment. Tim stayed home for 3 days before he returned to the hospital due to high fever. He was put on TPN and lipids for nutrition until the next chemo started.
THIRD TREATMENT: October 19, 1997 IFOS/VP-16 chemotherapy
A little off schedule due to the intestinal surgery, a decision was made to hold off on the stem cell harvest which should have been next on the agenda. The harshness of the first two treatments led us to do the third treatment of IFOS/VP-16 administered for 2 hours for 5 days.
By this time the Make-A-Wish Foundation contacted us to grant Tim a "Wish". The one thing that Tim had a desire to do was to go see his favorite hockey team play. We watched the schedules wondering which game he would be able to attend. Finally the date was set to go to Pittsburgh and see the Pittsburgh Penguins -vs- the Vancouver Canucks. His best friend Casey introduced him to hockey and they played one season together on a newly formed team. He wanted Casey to go with him on the trip along with his family. The wish was granted and arrangement prepared not knowing if he would actually be able to attend depending on recovery after treatment. But Tim had a goal. His mind was set. He was going.
Tim was back home by October 24th hoping that nothing would put him back in the hospital before the Make-A-Wish trip. He was set up with Home Health Care to administer nutritional supplements (TPN). I was trained how to give the GCSF shots and learned how to connect him to his nutrition at night. The week passed quickly as we prepared for our trip to Pittsburgh. Even up to the last minute if Tim ran a fever of 101 degrees or greater the trip would have been canceled. Dr. Murray had made arrangement for a physician in Pittsburgh to be ready if we called over the weekend in the event that Tim needed to be hospitalized or needed a transfusion.
October 31st, we were off to Pittsburgh. We made it and what a wonderful family trip we had. We met the players on both hockey teams. They signed Tim's hockey jersey and he came home with 3 hockey sticks and Tom Barrasso's goalie stick. We rode in the teams limousine to and from their practices and stayed at a very nice motel with bellboys that greeted us as if we were VIP's. Tim was the VIP, the rest of us were along for the ride.
Tim visited with the team players. Tom Barrasso and Chris Farro were his two favorite players that he visited with. It seemed that both teams were trying to win for Tim. The game started out with both teams making goals and it went into overtime tied. The team mascot for the Pittsburgh team was a huge penguin that came over and visited with Tim and Casey during the game. The weekend turned out to be a very enjoyable family vacation for all of us. A much needed break from hospital life.
STEM CELL HARVEST: November 6, 1997 Install Ports & Harvest Cells
Tim was taken to the operating room to have two temporary ports installed for the stem cell harvest. Later that day the stem cell harvest started. He had to be in the ICU ward to have this process done due to the fact that he had to be watched and monitored the whole time. He was hooked up to a machine that literally siphoned blood out of his body and removed the stem cells and put back what it didn't need back into his body. The first harvest lasted for 4 hours.
The next day the same process began again for 6 hours. Tim went home for the weekend and returned Monday, November 10th for 6 more hours of harvesting. An additional amount was taken to secure a second batch if the first one failed. Just precautionary measures I guess.
FORTH TREATMENT: November 12, 1997 HD CAV chemotherapy
Another 72 hour non-stop aggressive chemo. Tim had one day at home until he was admitted on November 12th for the chemotherapy previously skipped. We had already anticipated the dread of this treatment, but knew we must continue in order to fight.
At the beginning of this treatment Tim received a call from Judith at the Make-A-Wish Foundation and wondered if he might be interested taking a ride on the Blockbuster Blimp. He could bring two of his friends along. Tim was excited about this possibility. However knowing the severity of the last two treatments we were just a little concerned as to what was next at this point. But Tim faithfully said yes he would go. This was all he talked about during the 4 days he was on treatment. He had called Casey & Tiffany to go with him on the blimp ride.
The treatment started on Wednesday the 12th to end on the 15th and the blimp ride was on the 17th. Did he make it, of course he did. He was released from the hospital on Sunday not to return again until Nov. 22nd when he had to have a blood transfusion and platelets. He stayed the night at the hospital to be released the next day. On the 24th due to a high fever of nearly 103 degrees he was admitted back at the hospital. The fevers continued for several days. An infection was suspected in his ports.
On the 26th during a routine examination by Dr. Murray he thought he heard a different beat in his heart. A closer and longer listen revealed that Tim now has an irregular arrhythmia heart beat. Possibly caused by the high dose of Adriamcin (Doxorubicin).
The next day, November 27th, was Thanksgiving Day and Tim and one other patient on 3-North were the only patients that were not able to go home for the holiday. A wonderful surprise was in store for us as some parents of other cancer patients who had been in our shoes before had prepared a feast for us. The works! Nothing was left out. It was a very nice way of saying we care and know how you must feel.
Tim's heart was monitored by a machine in his room. On December 2nd, a sonogram was performed to view Tim's image of his heart and then he was released to go home for awhile in preparation for the upcoming surgical debulking of the abdominal tumors.
Dr. Murray had been in contact with Dr. Kushner in New York to schedule Tim's surgery to be performed by Dr. LaQuaglia. Considering the number of successful operations involving other patients with DSRCT, we all were in agreement that this was the best place to have this type of operation.
December 12th, Tim had the opportunity to attend an annual band banquet with his fellow band members and enjoyed being with friends once again. December 13th we were on our way to New York City for the first time. Somewhat excited about the adventure and scared of the unknown. We continued to pray for guidance and strength no matter what comes our way. So with courage and an adventurous frame of mind, off we went. We were anxious to meet Dr. Kushner and Dr. LaQuaglia after hearing so much about them from Dr. Murray.
December 15th, we met for the first time with Dr. Kushner. Upon examination and briefing about the surgery and talking in general about treatment for DSRCT we were all very comfortable speaking our minds and sharing together. Dr. Kushner was a bit concerned about Tim's newly found heart condition and wanted him to be seen by Dr. Steinherz, a cardiologist. A very serious minded women, but Tim had her smiling and laughing before we left. Tim was connected to a 24 hour halter heart monitor. They wanted to review the results of the monitor before scheduling surgery.
We went back to the Ronald McDonald House where we were staying just blocks away from Memorial Sloan-Kettering Cancer Hospital. It was nice to be able to walk back and forth as long as the weather wasn't too bad. We would rather walk than take a taxi. The next day we had a chance to take Tim out and see a little of New York. Since he was not feeling just great and his appetite had not come back after the last chemo he didn't have very much energy.
He had watched TV the night before and saw Andy Griffith on Matlock and he was eating a hot dog at a sidewalk stand. It looked so good watching him eat it that he decided he had to have a hot dog. It began to be a craving and couldn't wait to find the first hot dog stand on the side of the street. Soon enough, we spotted the yellow umbrella with a cart of hot dogs. He ordered two of them with the works, sauerkraut and all. That was enough to satisfy his craving for now.
We took a taxi to investigate going to see the Statue of Liberty. When we got there the weather seemed colder that when we left so we caught another taxi to Central Park for a short stroll. Later we returned the heart monitor back to Sloan-Kettering. The next day we were informed that the surgery needed to be postponed until his heart was in better condition for surgery. We were somewhat disappointed that we had come all that way and somewhat relieved at not having to go through surgery even though we knew it was inevitable.
We had prayed for wisdom on the doctor and surgeons behalf and now we were going home. The time wasn't right even though we had made the trip. This would provide a test of the waters, so to speak, for the next trip. We arrived back home on Dec. 18th.
Saturday the 19th was our 27th wedding anniversary. Tim's brothers, Joe & John, came to the house and stayed with Tim while we got away for the rest of the weekend. A much needed break to help you get a new perspective on things because the months ahead are going to be a real challenge. Tim enjoyed being with his older brothers as well. This gave them a time to be together and time was spent sharing with one another.
FIFTH TREATMENT: December 22, 1997 IFOS/VP-16 chemotherapy
Considering the first 3 treatments of chemo had damaged Tim's heart the plan was to do another treatment of IFOS/VP-16 (less likely to do further damage).
Tim's weight was now down to 110 pounds. Tim height is 6' but is unable to stand up straight and has a slight arch when he walks.
He uses his wheel chair for long distances and tries to walk when he can. His spirits are good and loves his nurses and doctors. He likes joking with them and making them smile. He is never rude to anyone even when he's having a bad day. He has faced each problem head on with a positive outlook and he shares his faith and trust in the Lord with his nurses and doctors.
Being in the hospital at Christmas was another interesting surprise. On Christmas morning Tim woke up to a room full of packages and a huge stuffed penguin. His face was bright with anticipation of opening the packages. We had an enjoyable day as family members stopped by to wish us a Merry Christmas.
By Friday the chemo treatment was over and he was released to go home. We had our family Christmas on Sunday and enjoyed each others company. Tim was able to stay home for 3 weeks. The longest he had been home since August. We had trips to the clinic for checkups 2 days a week. He received blood and platelet transfusions at the clinic and was kept on 12 hour nutrition (TPN and lipids).
In preparation for the surgery, a CT scan of the abdominal area and sonogram to check his heart beat was taken. The scans were sent to New York for review as to weather we set the date to go to New York for surgery or not.
SURGERY: January 29, 1998 Aggressive Surgical Debulkment of Tumors
We arrived in New York for the second time on January 25, 1998. This time we were told about this wonderful program called Care Force through Continental Airlines. They provided Tim and one parent with mileage tickets. This saved bundles. Arriving on Sunday gave us time to get settled in the Ronald McDonald House. All day Monday we were at the clinic, mostly waiting in different waiting rooms to see different doctors. The day consisted of the following:
Examination - Dr. Kushner, Dr. Steinherz
Lab test
Radiologist: Nuclear medicine - myocardial imaging
Anesthesiologist consultant
Transthoracic 2-d Echo & doppler color flow velocity mapping
EKG, stress test, halter monitor
The day was long and tiring.
The good thing about the day was the enjoyment of the Big Apple Circus Clowns. They would come around and visit patients in the waiting room and provide smiles galore with juggling, magic, and songs. Tim's favorite clowns were Dr. Fidget, Dr. Ginger Snaps, Dr. Bobo, Dr. Spaghetti, and Dr. Know Nothing. They made the time go by just a little faster and help to put a smile on your face. With Tim's good nature he showed them a trick or two of his own and entertained them as well.
After all the results, surgery was still scheduled for the 29th. A couple of days before surgery we were able to go out and see a little of New York. (our small window of opportunity) We took a taxi to the Empire State Building where you could go up to the 101st floor to see more of what you were seeing down below - buildings everywhere. The beautiful site was the sky and the sunset. We were amazed at the large number of yellow cabs that could be seen so clearly from the 101st. floor. For every 10 autos at least 7 of them were taxi cabs.
We also went to the second floor where they had the New York Sky Ride. The seats moved with the movie we were watching as we traveled around New York in a star ship enterprise type machine. After leaving there we visited a downtown mall.
Back at the Ronald McDonald house that afternoon we found out that the NYPD bus would pickup any of the kids and parents and take them to meet the New York Rangers hockey team. It was called, "Skate with the Greats." This was a fund raiser for the McDonald house and they allowed the kids to come and participate in the meal and meet the team. Tim and his dad had a great time. Afterward we had dessert at a little Italian restaurant just around the corner from the McDonald house.
Day of Surgery: January 29, 1998. Tim was hospitalized the night before in preparation for surgery. By 6:30 a.m. they came and took him to what we call the holding area. During that time we stayed by his side waiting for everything to be prepared for him.
An elderly woman came by to check on Tim and asked if we would like prayer for him and the surgeons. What a wonderful, peaceful and beautiful prayer she said on Tim's behalf. She had never met him before and probably didn't know what we had been through, but every word spoke straight to our hearts.
They took Tim to the surgery room while we left and went to the second floor waiting room. We were greeted by Tim's youth director, Mark Bushor and Tim's brother Joe who had just arrived from Texas. A good friend of mine, Karen McCormic, who lives in Massachusetts, came to be with us as well. It was comforting to have them with us during these trying hours.
It was a long day of waiting. We had already been prepared that the surgery could take 8 hours, or "as long as it takes to get the job done", Dr. LaQuaglia would say. A nurse, who was in charge of keeping everyone informed of their loved one in surgery, would come around every 2 hours to give us updates on how things were going. This was a great comfort to us. A chapel service was offered to families in the waiting room. We attended a short prayer and devotional that helped to give us comfort.
After the first three hours passed our first report was that Dr. LaQuaglia had reversed the Illeostopy. We knew Tim would be very happy to have his colon working properly once again. This was an answer to a prayer for us all. After a long 12 hours had passed we looked up and saw Dr. LaQuaglia coming towards us. The operation was finally over.
He explained to us that the large pelvic tumor had been removed. The spleen had to be removed, the tubes that carry sperm were cut. Tim did a lot of excessive bleeding during the operation but remained stable. His heart didn't pose a problem.
However, before he closed him up, he felt a need to check for any other tumors that might have been missed. Behind the liver and diaphragm area were several tumors. These tumors never showed up on the CT scan. After a 12 hour operation it was too risky at this time to do anything about it and recommended another operation would be necessary. The liver still has multiple tumors and would need to be treated by radiation. After Tim's recovery from surgery our plan is to go back to Texas, start the next chemo, then schedule a return trip to NY for another surgery.
Post Surgery: Tim was hospitalized at Sloan-Kettering for a total of 11 days of which 4 of them were in PICU. February had rolled around on the calendar by now and Tim was having some complications with his colon wanting to wake up. The diarrhea was uncontrollable. The amount of morphine had been reduced by this time since his surgery wound was healing. The diarrhea became a bad problem. They feared an infection called c-diff that could be contagious was tested on Friday Feb. 6th. The test results would take a few days. They moved him to a private room until they get the results of the test. We were pleased to have a quieter room.
Dr. Kushner wanted to start a 3-day chemo treatment since Tim was unable to leave the hospital and by Monday we could return to Texas. However, things got messed up. Too many people making decisions and due to the fact that he had a bad case of diarrhea, someone decided not to do chemo and wait to see what the lab test showed. Monday morning when Dr. Kushner came in and found out that he hadn't received chemo because of the diarrhea he was not very happy. He said we had two choices, either get back to Texas and start chemo immediately or stay here and have it done. He was concerned that the tumors remaining were active and needed to be treated. Since the lab turned out to be negative for c-diff , we were released from the hospital took the next flight home and proceeded straight to Cook Children's Hospital where they were waiting for our arrival.
SIXTH TREATMENT: February 10, 1998 IFOS/VP-16 chemotherapy
By 10:30 p.m. a 96 hour chemo had started. Tim was in the hospital for 8 days and then released to go home. He was in clinic on the 19th and 20th for checkups. On the 23rd he needed platelets. By the 26th he needed platelets again. He was in clinic again on the 27th. On March 1st, Tim started running a temperature of 102 degrees and had to be admitted into the hospital. He needed 2 pints of blood and did a sonogram to check his heart. He needed platelets again by the 4th. A CT scan was done to check for tumors. On the 5th he needed platelets.
Considering that his colon was still having problems working properly they decided to do a procedure called proctosigmoidoscopy - basically a rectal exam. He was having a lot of cramping and pain every time he had a bowel movement and the consistency was still not right. The exam showed everything to be in order and that his colon just needed more time to "wake up" as they say. On the 6th he was able to be released and sent home. A low dose of moriphene seemed to help control the diarrhea.
On Sunday evening he was able to attend a church function. The Harbor Light Choir came from Houston to sing at our church again. Tim was so excited to be able to attend. Most of the choir members remembered Tim from the last time they came to our church.
On the 10th and the 13th he had checkups at the clinic. On the 15th, Tim attended a hockey game in Ft. Worth with his youth group. The Bramas Hockey team honored Tim that night with one of their sweat-shirts with their hockey logo on it. It was a surprise to Tim and he was a little unsure about walking out on the ice. His youth director escorted him out and that made it OK to be out in front of hundreds of people.
On the 19th, Tim's counts are all back to normal and surgery will be scheduled upon arrival in New York next week. On the 22nd, Tim attended another hockey game. This one being the Dallas Stars-vs-Pittsburgh Penguins. Two of his favorite teams and also his best friend's favorites as well. This was a must see game. His friend Casey had purchased tickets a long time ago in hopes they would be able to see it together along with their dads. This was a birthday present to Tim from Casey.
Tim received a call from Judith at the Make-a-Wish foundation and she just so happen to have tickets that were donated by Eddie Balfour, the goalie for the Stars. Tim accepted these tickets and Casey and Tim invited a few other people to go along. This turned out to be an enjoyable event and getting out doing fun things again felt almost normal. This was good for Tim to be as active as he can without over doing it.
BIRTHDAY CELEBRATION: March 23, 1998 18 years old today.
After a big weekend of hockey, the birthday celebration was celebrated with family. We were also getting ready for a big trip to New York, leaving on the 24th at 6:30 a.m. Tim was happy to have been able to be home for as long as he was before this next surgery. We enjoyed each others company and fun with family, friends and church activities.
NEW YORK TRIP FOR SURGERY: April 7, 1998 - Going in for the rest.
We've been here before, we know the routine, but the anticipation of surgery is still controlling our emotions and thoughts. We look back and see what he has already come through and you think how much more will it take? How much more can he take? Spiritually he is doing fine, physically he is not well. Over the months we have seen so many peoples lives change over Tim's battle with cancer and how he continues to put his trust in the Lord. His witness to youth his own age have made a dramatic change in their lives. School friends are not the same. Our church is not the same. The outpouring of letters, cards and prayers are so inspiring. Someone said to me the other day, I can't forget you because I'm praying for you. Isn't that the key to all of this - Prayer. The most precious gift anyone can give Tim is to pray for him.
Tim and I arrived in New York on March 24th . The weather was great for this time of year. A big evening was awaiting Tim that night as we unpacked our bags at the Ronald McDonald House. A taxi was called to take us to the Majestic Theater where Tim & I would see the Phantom of the Opera. I had secured tickets weeks ago and the only reason we were able to get in was due to Tim's condition and upcoming surgery. We were given orchestra seats at a very low rate. We were escorted in the theater and the first to be seated.
The play was magnificent. We felt as though we were far away from troubles, not a care, not a worry. Just enjoying the pleasures of a dramatic love story about an opera and a phantom who falls in love with an actress. Tim had tears in his eyes at the end of the play. He was so happy to have been able to see this play in New York. He had always wanted to see it when it came to Texas, but it's nothing like seeing it in New York. Afterwards, we went to our favorite Italian restaurant around the corner from the Ronald McDonald house.
The next two days we spent in clinic at Sloan-Kettering having lab work, checkups, heart monitors, consultations with physicians, & surgeons. One major problem raised. Tim was not physically able to have surgery. Dr. Kushner felt like he needed to gain more weight and get over a cold in his chest he had been fighting for the past week. Tim's dad arrived in New York the next day to stay with us through surgery.
The only solution was to get back on TPN for a week and then schedule surgery. So he was admitted into Sloan-Kettering for 3 days while they started him on TPN. Then we returned to the McDonald house to continue TPN with Home Health support. Surgery was now scheduled for April 7, 1998.
We arrived at the clinic on the 6th. After lab test and overall check up and results were that surgery would be performed on the 7th as scheduled. With that bit of news we decided to go out on the town one more time - (another window of opportunity). While Tim was in the hospital those 3 days, he attended one of the hospital activities called Teen Night and won a $25.00 gift certificate from the GAP. With coupon in hand we were off to find a GAP store.
We soon found out that the world's largest GAP was right here in New York City just blocks away. A taxi took us to Broadway & 42nd. St. and let us out at the front doors of the GAP. Tim bought a GAP hat, a NY GAP T-shirt and a pull over jacket. We shopped for awhile and decided to walk down Broadway to see what New York was really like. The billboards were advertising plays like The Sound of Music, CATS, the Phantom of the Opera, and the newest Broadway hit, the Titanic. Excitement filled the air along with the feeling of great concern of knowing the next day would be surgery. We tried to make the best of the time we had together. We walked by this one place that caught Tim's eye. "Hey", he said, "do you think we can go in and look around?"
What he had found was the largest video game room I had ever seen. This place was called XS Virtual Game Arena. They had it all from indoor laser tag, to virtual reality games. Tim enjoyed the interactive race cars and the skateboarding machine. We were not sure how much Tim could do without getting over tired and it was surprising what he could do. After an hour he tired out and was ready to get back to his wheelchair. It was good to see him actively doing something fun.
If hospitals had game rooms like this, I believe kids would be out of bed a lot sooner.
By this time it had gotten dark and the city lights were fantastic around Times Square. It was also getting late, so we flagged a taxi to take us back to the Ronald McDonald house. Tim was very tired after that adventure and it felt good to get to bed. We had prayer time and read scriptures in preparation for surgery early the next day. Tim continued to have a positive attitude toward treatments and surgery. He felt confident in the physician team at Sloan-Kettering as well as Cooks Hospital. He continued to put his trust and faith in the Lord for comfort and strength.
We were up by 5:00 a.m. and was at the hospital by 6:00 a.m. Lab work was done and he change into a hospital gown. He was taken to the day bed area to wait for his turn for surgery. Tim had a good opportunity to sleep awhile longer in between all the noises of the busy nurses and other patients. Finally around 11:30 a.m. they came with a stretcher to get him. We followed them to the same waiting area and just as before there was that same sweet elderly woman wanting to pray with us again. This time she had remember Tim from the last time he was here. It was comforting to have her pray for him. Off to surgery he went.
This time a long surgery is predicted but probably not as long as the first. David and I went to the same waiting room and within 2 hours we had a report that things were going fine. On the forth hour Dr. LaQuaglia came out and informed us he had successfully removed most of the tumors he was after. Unfortunately, he was unable to remove tumors that were stretching out as if reaching toward his main heart arteries. If bleeding started from these veins it would have been too hard to stop. Conclusion is that the liver and the other tumors will need to be treated with radiation.
We were disappointed that he still had, what looked like to Dr. LaQuaglia, active tumors after all the aggressive chemo he has been through. Much worse is the fact that this area of tumors never showed up on the CT scans. We were lucky that Dr. LaQuaglia found them and removed as much as he could. It will be important to get the rest of the treatments out of the way to be able to get to the radiation and stop this growth.
Recovery period in PICU was much longer this time. He spent 7 days there. Mostly due to the fact that he had a chest tube and had fever for 3 days.
Tim's heart continued on it's irregular beats that they monitored for days. Soon his beats were normal. The operation was just under his right rib cage and x-rays showed a small amount of fluid in the lung.
Every time I turned around it seemed as though they were x-raying his chest. On the 10th they did an EKG and an x-ray. On the 11th an x-ray. On the 12th they did 3 x-rays and removed the chest tube. On the 13th he was moved from the NY PICU hospital to Sloan-Kettering where they did an x-ray upon our arrival. His white count is also up to 29,0000. On the 14th another x-ray and white counts are now up to 39,000. On the 15th an echo was performed to check his heart condition and it looked good. His white count today is up to 69,000.
Dr. Kushner came in very concerned about the increase in white cells. He feared the worst- Leukemia. I was stunned. We hoped for another explanation. He set up a bone marrow test for Tim that afternoon and we would know the results soon afterward. Tim & I prayed for understanding.
Later that evening Dr. Kushner came in with the news. The words rang in our ears like a loud gong, "You have Leukemia." He couldn't believe it. We had a hard time believing it as well. Tim cried as he hid his head under the covers to try to escape the thought of having another cancer to fight. We thought one was enough. This was the first time in all that he's been through that he show outward emotions with tears. My heart ached as I comforted him. The results of which type is yet to be determined. A meeting is scheduled on the 16th when the Tumor Board gathers together to discuss cases. They came in afterward to give us more details about this newly diagnosed cancer.
The next day seemed long with anticipation of waiting for the results. Tim's dad had flown to Georgia where he was expected to work and immediately upon arriving there got on the next plane to New York. We kept getting feelings of terrible news. Like maybe they were going to just send us home and not do anything else. We were asked more than once if Tim's dad would be at the meeting. The fact that Tim has Leukemia while you are treating another type of cancer is not good.
We were told that he had Acute Myeloid Leukemia and we had 3 options of treatment. The plan is to go back to Texas and meet with the physicians who have been treating him from the beginning and go over the 3 options of treatment that the New York physicians came up with and see if they agreed or had any other treatment suggestions. We don't expect to ever go back to New York at this point and said our good byes to special people that cared for Tim. The very next day we were back at Cook Children's Hospital in Texas.
April 17, 1998, we arrived at the onocology clinic at Cook Children's hospital to be greeted by smiling nurses who were waiting for our arrival. Even though it wasn't home, it felt good to be back in Texas and familiar faces and surroundings. We gathered together in a conference room to discuss Tim's condition and to make plans. Tim was very much a part of his treatment plan from the very beginning and now that he is 18 he is more than able to make decisions that will effect him. The following chemo treatments were given as an option:
Daunorubicin side effects: risk of heart damage but will treat both tumor
and leukemia
Thiotepa side effects: this is an all or nothing treatment
Cytarabine side effects: would do nothing for the tumors
(Cytarabine is the best chemo against AML)
The option to go home without any more treatments was also brought out on the table for discussion. Chances of Tim making it though any of these chemo treatments was slim and chances of successfully winning the battle of two cancers was around 1%.
Not a dry eye was seen in the room. This was a very emotional time for all of us and the others in the room. Tim's strong faith and determination took whatever percentage they had for he knew the rest of the percentages are in the Lord's hands. Considering Tim's heart condition at this point we could not see doing Daunorubicin at this time.
Cytarabine looked like the best choice since it is designed to knock down the leukemia hard and fast. One thing that might be in our favor is the fact that the leukemia was caught in the beginning stages and this I hope will make a difference.
Tim went straight from the conference room at the clinic to 3-North at Cook Children's hospital. They had saved the suite for us in order to help Tim feel more comfortable. We had been in this room several times before and they knew it was his favorite. Lab test revealed that Tim's white count for today was up to 124,000. It had only jumped a couple of thousand since yesterday.
Our concern is the length of time that has passed since we've treated the Desmoplastic tumors. Last treatment was February 10, 1998 and now were in April. The recovery from the last chemo was longer and the delay in surgery put us unavoidably behind on treatments.
This leukemia has really caused heartache. It's as if this leukemia has come in and taken over to the point that it's more aggressive than the tumors and is more of a life threat at this time. How ironic.
TREATMENT FOR LEUKEMIA: April 17, 1998 Cytosine Arabinoside (Cytarabine, Ara-C, Cytosar)
8:00 p.m. the chemo was being administered. On with the battle! The first dose was set up to take over one hour. As soon as the hour was up, I thought Tim was up. He shared with me later that all during the side effects he kept praying that if this was the time for him to go be with the Lord then he would be ready. The pain in his head was terrible. He felt sick to his stomach and feverish. They gave him medications to help with nausea which helped him sleep. He felt bad the whole night.
By eight the next morning another dose was administered. Lab work revealed that his white count had gone down significantly to 16,900. This was a good sign as they expected it to continue to rise to a dangerous level. We were thrilled of the good news and felt as though we had made the right choice.
8:00 p.m. another round of chemo started. This time over a 3 hour period. Side effects this time were greatly reduced. The next morning his white counts was 4,100. On this day he needed 2 pints of blood. Chemo treatments continued each day there after over a 3 hour period and treatment ended on the 22nd. On the last day of chemo his white count was at 1,200.
Tim's irregular heart beats started up again and lasted for about 5 days. He was connected to an EKG machine to help keep watch. An x-ray was taken of his chest and they say that part of his right lung was still partially collapsed from surgery. Other symptoms began to happen like uncontrolled diarrhea. He was given Lomotal to help control this problem and it worked fine.
On the 24th, he started having an eye irritation in his left eye. This is also one of the side effects from this chemo. Gradually we had to put a patch over his eye because any light caused his eye to hurt. The 25th was somewhat of a depressing day as he had made plans for him and his girlfriend to go to the school prom before the last surgery. If the leukemia hadn't interfered he probably would have been able to go. His girlfriend came to the hospital that afternoon in her prom dress in hopes that they could at least have pictures made together. She was so beautiful in her pink satin dress.
Tim had both eyes patched from the irritation. He was able to remove the patch on his right eye so he could see her for awhile. No pictures were made together. It make him feel good that she came and sat with him. Tim's white count was 500. By the 26th, Tim was unable to see out of either eye. We had to keep the room dark with patches on his eyes. We were told that this was temporary and would not have any lasting damage. It slowly went away and his eyes are back to normal.
On the 27th, Tim's right toe started hurting like he had an ingrown toe nail. It was on his big toe and it started hurting bad. Being that his counts are so low, he was advised to leave it alone and there was nothing they could do. He soaked it in warm water with antibacterial soap but the infection began to increase daily. By now his white count was not even registering. As the days go by his toe increasingly gets worse. Now it is twice it's normal size and red as a beet. He has been put on 5 major antibiotics to help fight infection. The antibiotics are beginning to irritate his stomach lining and he is on morphine to help control the pain for his toe. So between the morphine, and the stomach relief medications he is constantly sleeping.
The days and weeks have gone by and still his toe is swollen and nothing can be done about it unit his white count comes up. Dr. Murray started Tim on the GCSF shots to help with the white count. His toe started to drain some of the built up fluid.
Tim discovered a lymph node that was causing his leg to hurt. Dr. Murray examined it and felt that it might be enlarged because of the infection in the toe. To be sure he recommended that the lymph node be removed. They will also do another bone marrow extraction to test for leukemia cells.
On May 19th, it was decided that the toe needed to be operated on. His white counts today being at 14,000 with the help of the GCSF shots. We are somewhat in a holding stage until the toe gets better. It is so frustrating that this toe is such a problem. We could have done some of the recovery at home with clinic visits if he didn't have the infection.
SURGERY: May 22, 1998 Bone Marrow Extraction, Infection drain in toe and Lymph Node removal.
Tim went into surgery around 10:30 a.m. This surgery seemed to make him a little more uncomfortable than the others for some reason. The anticipation of not knowing if the leukemia is back or not.
After an hour, Dr. Hamilton came out to talk with us about Tim's toe surgery. He was pleased at how good it went. He was able to do the surgery without cutting into the toe. The toe nail provided a means of entry and was able to be cleaned from that point. The bone that had been infected was also cleaned from infection.
After a couple more hours, Dr. Murray came out to meet with us. He had information for us regarding the bone marrow sample. Sadly to say the leukemia was there and looked as though we had not done anything to stop it. The chemotherapy had no effect on it what so ever. He scheduled a meeting with us this evening in Tim's room so we could discuss plans with Tim after he fully recovers from the surgery.
At 6:30 p.m. Dr. Murray, the hospital chaplain, one of Tim's nurses came to the room and we sat around Tim's bed as we began to talk. We listened carefully to what Dr. Murray had to say as our hearts broke as he explained that medically there was nothing more they could do. Going on with the stem cell harvest would only make him worse if not take his life in a more dramatic way. Suggesting that going home and living out the rest of what time he has left without chemo side effect would be the best situation for Tim. He explained that the leukemia was at this time talking over again. Once his white counts get high enough, he will slowly go into a coma and peacefully pass on.
How much time does he have? His white count today is at 22,000. Tomorrow they are suspected to double and again the next day . Once they reach over 200,000 then the end will be near. Dr. Murray suspects he will have a few days at most. Hospice care was suggested and will talk more about this later. Tim asked to speak to Dr. Murray privately. We talked with the minister for awhile in the hall and gave Tim time alone with Dr. Murray. .
Tim's outlook once again is positive. He said he put his life in the hands of the Lord from the very beginning and there's no reason to stop now. He is ready to go home and see what the Lord has for him. Medically we had done all we could. Tim believes that if it is his time to go then the Lord will take him no matter what the circumstance. If he has more work for him to do here on this earth than there will be another miracle. He believes this with all his heart and is also prepared to go to a heavenly home as well.
GOING HOME: FIRST DAY AT HOME Sunday, May 24, 1998
Medications: low dose Moriphene drip, TPN as desired, medication for stomach upset.
Leaving the hospital was not the usual celebration of ribbons taped across the door as others who left because they were in remission and they break through the barrier to regain a renewed life after months or years of treatments. Ours was more of saying goodbye at a family reunion. Nurses, doctors came with open arms full of hugs. We embraced with great appreciation and love for the care that they gave our family for the past 9 months. If felt strange to leave knowing we would not be back. Our hearts were heavy with emotion.
Tim grabbed his new video camera as he wanted to film leaving the hospital. Now that he was going home, all he could think about was getting there and being with his family and friends. His brother John, Aunt Susan and Uncle Tom came to help with the homecoming. Their concern and care gave great support for us at this time. Arriving home, we were greeted by Tim's granny and our friends, the Jacobs who were there preparing for our arrival. St. Mark United Methodist members responded by sending food as soon as we arrived and to let us know that we would be receiving meals daily for as long as we need.
The St. Mark Youth group gathered at our home that night to visit with Tim and let him know how much they care. They presented him with a big yellow banner with a huge penguin on the front holding a sign that said, "We love You Tim" and each youth had placed their hand prints all around the banner and signed their names on it. Tim was honored to receive this special art work that they did out of love for him. Our youth director, Mark Bushor, led them in prayer and Holy Communion.
SECOND DAY AT HOME: Monday, May 25, 1998
Tim was surprised with the Cleburne High Transition Band who came to our house this morning to performed in our front yard. The band director, Mr. Reed shared with me that he was awaked from sleep the night before and he felt the Lord telling him to come to our home with the band. Tim was so excited and honored. We all came out and sat on the front porch and enjoyed the performance. People stopped by from the community and came over to see what was going on. Our minister, Jon Mac Taylor came by as well. As they played their jazz music, I could see the enjoyment on Tim's face. It didn't take much for Tim to become fatigued.
I began to wonder what his white blood count was today. I decided not to worry about it and take each moment as it came and let Tim do what ever he felt he could do. He was up most of the day.
He sat in the living room as he greeted friends and family who came to visit. That night I prepared to administer the TPN to run for 8 hours. Tim was very tired after a big day and said he was happy to be home again. Other than being tired, he did quite well for his second day at home. The home hospice nurse came and visited with us for awhile and then he was off to sleep. He only woke up a couple of times during the night.
THIRD AND FINAL DAY AT HOME: Tuesday May 26, 1998
Tim slept late in the morning. We received a call from the Cleburne High School principle letting us know that today would be a surprise graduation celebration for Tim. Some of the staff and school board members would arrive around 1:00 p.m. and present Tim with his high school graduation certificate. Once they had arrived at the house, I went into Tim's room and told him his principles and some of the staff were here to see him.
I felt that Tim was too weak to get out of bed as he hadn't been up all day. I was also concerned that his white count must be very high. As soon as he heard who was in our living room he quickly got up and dressed. He felt that he couldn't walk to the living room so he got in his wheel chair. I suggested to Tim that they could come to his room and he said no, he wanted to get up and go to them.
In the living room he saw gathered together some of his teachers, counselors, school board members, and his two principles. Mr. Ripple greeted him and explained their purpose was to present him with a graduation certificate. Tim was very surprised. Tim's brothers, John and Joe, his mom and dad and his granny and Uncle Tim were all present for the celebration. Joe quickly ran to get his graduation cap to placed it on Tim's head. Mr. Ripple gave a short speech commending Tim in his struggle and how he has inspired many of the youth in school. Once his graduation certificate was presented to him, Tim had tears in his eyes as he smiled and thanked Mr. Ripple and everyone who came.
We were all happy and sad at the same time and tears were flowing freely around the room. We were able to video tape the graduation with Tim's camera and it will be a cherished memory for years to come. After everyone left, Tim went back to bed and slept. He said he wanted to get as much rest as he could before tonight. He invited his best friends, Casey and Tiffany and their families to come watch the Stars Hockey game with him.
3:00 p.m.: Tim wanted to take a couple of hours of nutrition to help energize him for tonight for the game. David & I have not left Tim's side all day. My feelings were telling me that he would be too weak for the game tonight.
As he slept, he would have friends stop by to see him, but he was too weak to visit anyone. He kept talking about Casey and Tiffany coming over to watch the game with him and he needed his rest. His white count must have been extremely high and I feared he would go to sleep and not wake up. He ran fever off and on through out the day.
His dad and I sat quietly by his side so we would be there when he woke up. Later that evening I read scripture to him. He said that helped him rest better. Around 5:30 p.m. I disconnected the TPN thinking he might want to get up for awhile if he was not hooked up to a pump, but he just wanted to sleep.
6:30 p.m.: his company arrived to watch the hockey game. He told me to let them stay and watch it without him. For some reason he didn't want them to go. He liked the idea that his friends and their families were here in our home. Every now and then someone would let us know how the game was going, but Tim didn't seem to be interested.
9:00 p.m.: Tim began to start being agitated. He would sleep and then suddenly wake up. Our minister was called and he came right away. He visited with Tim privately and then prayed with us. By this time, Tim was having a hard time getting enough oxygen. His dad turned on the oxygen tank and placed a breathing tube on his nose and that seemed to help.
9:45 p.m.: Tim was extremely agitated. He wanted to get up and then quickly get back into bed. He would rest a few minutes then wake again. Then he would need more air and then he would take the air tube off as if he was fighting it.
The home hospice nurse was called and arrived around 10:15 p.m. She was getting out her stethoscope. I looked over at Tim and I knew in my heart the time had come.. I don't believe the hospice nurse was truly aware of what was happening. I asked her to quickly go and get his dad and his brothers who had just walked out of the room for the nurse to check him.
As I faced Tim, his body raised up with open arms as if reaching out to someone and his eyes were intensely focused. Tim's dad came in as he relaxed and laid back on the bed and slowly began to breath with short breaths. His dad crawled up in bed with him as he wrapped his arms around Tim and repeated over and over, "My good and faithful son", well done, I am so proud of you. I cried out to Jesus over and over as we felt Tim's body become lifeless.
The room was filled with the presence of holiness. I could feel Tim's presence even though I knew he was no longer with us. Soon afterward his brothers and granny entered the room and we all hung on to each other as we cried.
The hospice nurse called the funeral home and called Dr. Murray and Rev. Jon Mac Taylor and notified them of Tim's passing. Soon we were greeted with our pastor, and youth director. We all needed to talk over the arrangements for Tim's burial and have a time of prayer and closure. David & I wanted to remain in Tim's room with him as long as we could. We felt a comfort in being by his side as we discussed and shared with each other. John and Joe felt a little uncomfortable but later said they were glad we stayed in the room.
Around 11:30 p.m. the funeral home came to get Tim's body. By this time I had gone into my room and did not want to see him being taken from our home. Granny stayed with me as we comforted each other. After we got everyone settled. David & I tried to get some sleep, but none of us could sleep.
A thunder storm suddenly seemed to be all around our house. The thunder was so loud, louder than I had ever heard it before. John & Joe couldn't sleep and they decided to go outside and talk. While they were talking about Tim and his death they said they both felt a presence as though someone was standing with them. They both looked at each other at the same time and said "Tim" and then the feeling was gone. They felt like his presence was with them in that moment.
VISITATION NIGHT: Thursday, May 28, 1998 Family & Friends
Instead of the usual family & friends gathering at the funeral home, we decided to meet at the church and present Tim's life in pictures and things from his room. The months of outreach from people all around left us with banners, cards, poems, stuffed animals, and hockey memorabilia.
We placed long tables full of things that were Tim's from his room and set out pictures of the things that were important to Tim like his trip with the youth on a ski trip, several mission trips, helping with habitat for humanity, and his best summer past time was going to the Methodist camp.
The banners were hung around the room that people signed and sent messages of love. The poems were displayed and all the stuffed animals that he was given while in the hospital. His band director brought the Tuba that he played in band and we displayed his band jacket next to his tuba. We played a tape showing his graduation and the Transition Band performance. It was a time of reflecting on Tim and his life in the church and in mission. This visitation was well received by all who attended.
A woman came to the visitation who did not know us or Tim personally, but had heard about him from her daughter who was in band with him. She kept her mom informed about Tim as they continued to pray for him. She came looking for Tim's parents that night with a message she had received from the Lord.
On the night that Tim passed away she was woken from sleep to get up and read scriptures. After reading, she was given a vision of a young man who had just passed away and she saw him sitting in Jesus' lap. She received a message to go and search for his parents and to assure them that Tim is in heaven.
Once she found us she asked to see a picture of Tim to verify that the boy in her vision was our son. She agreed that Tim was the boy in the vision. She explained that the Lord had given her many visions in the past and she records the date and time of each vision in order to show truth. This vision she saw of Tim corresponded with what took place after Tim's passing.
I don't doubt that she was given a vision. This just goes along with the band director who felt led to come to our home and bring the band performance. The school board who felt led to come to our home and give Tim his graduation certificate. Even going back to Tim's treatments and how things just worked out when we didn't know what we were going to do.
There was young man that came to the visitation. Someone that we had never met. I noticed him as soon as he arrived as he was crippled and had to walk with the help of hand crutches. He made his way slowly around the room and upon finally reaching us, he began to explain how much Tim meant to him. He said that out of all the students at school, Tim was one of the few who was kind to him and helpful. He said he will never forget him and his care for him. He said he didn't feel like a cripple around him and would miss him greatly.
TIM'S FUNERAL (LIFE CELEBRATION): Friday, May 29, 1998
On this day we celebrated the life of Timothy Isaac Mays. The Transition Band played during the service. Tim's favorite camp song was sung. Draped over Tim's casket was the cloth banner that the youth group painted for him. It had large Penguin painted in the center and hand prints all around the edges of the youth and counselors. The Tuba Corps were the pall barriers along with Tim's best friend, Casey.
A large photo of Tim in his band uniform was placed in the sanctuary and now hangs on our family photo wall. We received a ceramic hospice angle in memory of Tim and I attached it on the frame of his picture and hung his 1998 graduation tassel on the other side. This is a wonderful reminder of his angel ministry to the nurses and his graduation from high school and graduating into heaven. Tim's outreach in ministry to other people during his illness proved to be a life time of ministry. His dad stated that in his whole life time he wouldn't be able to touch as many lives as Tim touched in just his short time here on earth.
THINGS WE DID TO HELP EASE THE PAIN:
I want to share some of the things we did to help in times of trouble. Things that brought peace in time of turmoil.
Tim learned a song at an Emmaus gathering called, "Lamb of God". His dad helped him to learn this song and we would sing it in the car. Later on at Glen Lake Methodist Camp in the summer of 1997 this song was used during the services. Tim began to really enjoy the words and the comfort of this song during his treatments. Anytime things were getting rough, I would set and hold his hand or just hold him, we would sing this song together. For example, one of the antibiotics he was receiving by IV gave him bad cold chills. We stacked blankets on him trying to warm his body. Dad rubbed his legs and I leaned over and held him. Very quietly with a chattering sound, I heard this special song come from his lips. Then we all joined in and the chills slowly subsided. Other songs were sung, but this was our favorite.
Lamb of God
Jesus, Lamb of God, worthy is your name,
Jesus, Lamb of God, worthy is your name.
When I fall down you pick me up,
when I am weak you fill my cup,
you are my all in all.
Seeking you as a precious jewel;
Lord to give up I'd be a fool,
you are my all in all.
Listen to
Lamb of God
FAVORITE SCRIPTURE: I John 4:19
We love because he first loved us. If anyone says, "I love God," yet hates his brother, he is a liar. For anyone who does not love his brother, whom he has seen, cannot love God, whom he has not seen. And he has given us this command: Whoever loves God must also love his brother.
FAVORITE CHRISTIAN BAND & SONG: Petra's "No Doubt"
This CD was given to Tim by his youth director. He played this song over and over throughout his treatments and knew every word in the song. When he sang it you could see in his eyes and the smile on his face that he had "No Doubt" that everything would be alright.
READING SCRIPTURES OR SHORT STORIES FROM GUIDEPOST
Several times Tim would be feeling bad and needed to relax. I would sit by his bed and read to him. He would close his eyes as if visualizing scenes as I would read and when the story was finished he wanted to hear another one. This helped to take his mind off his pain or discomfort.
CLOSING THOUGHTS:
Now that you have read "Tim's Story", I only hope that by sharing with each other we can experience more than we are and grow. If you would ask me if there was anything we would do differently, I would have to say, no. As time has passed by, I have more questions than I have answers.
I don't believe that God caused this illness. I do believe that the Lord uses circumstances to help others, as he did in Tim's case. I believe that the Lord healed Tim of this cancer by giving him a new body in heaven.
All throughout Tim's illness, the Lord touched peoples lives in a very dramatic way. I believe that the Lord has a plan for us in whatever situation we are in. He guides us and helps us through each situation. Tim knew in his heart that the Lord would take care of him and he did. Someday, we'll know the answers to all our questions and most importantly, we'll understand.
Enough said!
God Bless you in your journey .
Katherine Mays
email address: