As a single mother of two boys (ages 5 and 7) I worked first as a secretary, later as a sales rep for industrial packaging, then selling real estate, and finally as a general contractor, building single family homes.
The boys were latchkey kids, like many others. I learned many years later some of the shenanigans that took place. Such as, falling through the ice on a nearby river, coming home to dry their clothes, so they could go back to try it again. We had a small home and, though money was tight, we always had plenty. They were always dressed nicely. As for me, my mom was a seamstress and could make beautiful outfits for me without a single fitting.A care package would arrive in the mail every now and then.
Along the way there was lots of love, hope, happiness, and sometimes disappointment and heartache. The boys grew up and got married. I helped each of them build a new home. Tom, my youngest, had two children. This story is about Tom, who was now married to his second wife.
Unexpectedly, the ultimate heartache.
My son, Tom, owner of a Muffler and Brake Shop, had not been well for 2 or 3 weeks. Somehow he had managed to get to the shop every day. He sat on a little stool behind the counter handling customers and suppliers, and dealing with all the necessary day to day problems that go with the job. I don’t know how he did it. Finally, when he became jaundice, he knew he had to see a doctor. Results of an MRI showed “abnormal.” The doctor ordered another MRI.
It was May 2004.His grandson, John Thomas, who lived with his Mom in Joliet, IL, was graduating from High School on the 28th. He had joined the Marines and would leave for California shortly after graduation. Joliet is about a 45 minute drive from where I live in Northwest Indiana (a suburb of Chicago). Tom, his dad, also lived in Northwest Indiana.
On May 27, another doctor, a liver specialist, wanted a CT, and ordered a biopsy, X-ray, and CRCP (whatever that is) at Community Hospital. Apparently, for some reason they did not, or could not, do the mysterious CRCP. So this was scheduled at a different hospital.
On the day of graduation, it was freezing cold. I knew how important it was to both Tom and his son that he attend. I told him if he felt like going, I would drive. The Commencement of over 400 graduates was held in the football stadium. The wind was bone chilling as it howled around the stadium benches. Fortunately, our last name begins with “F.” So, after only about an hour, John received his diploma, and Tom went to the car to wait it out, until John could meet him there.
I took him to the hospital on June 1st for the CRCP test. His brother and I were left in a waiting room, while he lay on a gurney for over 5 hours before it was clear they didn’t have a clue what to do. He was transferred back to Community Hospital, where he was diagnosed with blockage of the bile duct (a tumor). The next day he had surgery to insert a stent from the bile duct for drainage.
After a week, they were doing nothing. Clearly, this was the wrong hospital. So Tom plainly asked what they were doing. (“Just letting him die”)? He asked them to send him to another hospital. Little did he know that I too had asked them. I requested Northwestern Memorial Hospital in Chicago. On Sunday, June 6th, they did transfer him to Northwestern, where, as it happened, there was one of the most renowned liver transplant surgeons. Ironically, that was the same day his son left for California.
Dr. Abaccassis, the liver specialist, along with his team, came in to see him on Monday. A few days later, after many tests, they came back to give him the prognosis. The first option would besurgery to remove the tumor. The surgery carried a fatality rate of 80-90%. No beating around the bush---- IF he survived the surgery, it was only half the battle. Complications that accompany such surgery have a 10-20% recovery rate. His other option, was even worse.
Typical Tom, his concern was not for himself, but for me. He didn’t want me to hear this devastating news from the doctors. He was afraid I wouldn’t be able to handle it.
On June 10th he was discharged. To go home and take some time to make his decision. The decision was clear. So the surgery was scheduled for Monday, June 21.
Also living in Joliet with her Mother and step father was his daughter, Carolyn. She was 15, a rebellious teenager having a difficult time. On June 8 we were able to get her placed in a Christian Children’s facility, Shults Lewis, for troubled teenagers, located in Valparaiso, IN. While Tom was home, I took him out to visit her. It could be the last time he would see her. She came out to the car to visit with him. She told me later how much that visit meant to her. (Thankfully, it wasn’t the last time they would see each other.)
On June 18, we returned to Northwestern, and on the 21st of June at 7:00 AM he went into surgery. After 5-6 hours one of the surgeons came out to give an update. The surgery took 11-1/2 hours (extrahepatic bile duct carcinoma). The Doctor had to dissect a larger portion of the liver than first thought, but it looked clean. He had taken approximately 80% of the liver. The good news was, the liver regenerates.
Gratefully my brother and sister-in-law were with me on this very long day. At about the 11th hour, much to my surprise, John walked in. He was able to get an emergency leave after only a month in the Maries. Shortly after he arrived, he and I were allowed to go in to recovery to see his Dad. When Tom opened his eyes, the first thing he saw was his son.
He did well and was discharged 5 days later. He wanted desperately to spend one night at his own house, before coming to my house for that long road to recovery. I understood how important that was for him. So he did.
The start of many trips back to Northwestern. Drainage tubes, bandages, pick lines, IV’s, scheduling medications, etc. etc. etc. I never had aspirations of becoming a nurse, so I had a lot to learn.
The first trip back was in 2 days to see doctors and for a scan. The second was couple of days later to Emergency, where he was readmitted to hospital. On July 1, he was back in surgery to repair a tear in the liver and flush the cavity. This surgery took its toll. Even though it was touch and go, my mind never went to that dark place.
A couple of days after the surgery he had the hiccups. It went on for hours. He was so weak, and nothing they did helped. (I stayed that night.) There was a medicine used for schizophrenia which, as a last resort, was ordered. A few minutes after the first dosage, he got relief and fell asleep. I have no doubt that it saved his life.
I had a little dog, Sassy, which I adored. I dropped her off by my brother around 9:00 each morning and headed for Chicago. About a 30-40 minute drive. I went every day, usually staying until around 6:00 PM, sometimes later, depending on the current circumstances.
I remember one morning, when my brother said to me that I did not have to go every day. He was my son, how could I not go every day. I needed to see him myself, every day. I didn’t want to miss anything.
Although they were separated, his wife visited him a couple of times. He looked forward to those days. She took the train from Indiana to Chicago, because she did not drive in the City.
Somewhere along the way, Tom picked up a serious infectious disease called pseudomonas. One of those hospital infections that is tough to beat and can only be treated intravenously.
Three weeks after entering the hospital, he came home with a hoard of medications and lots of instructions. A drainage tube from his stomach connected to a bag. Two pick lines for intravenous medications. One line for medication that was administered through a little blue box that controlled the dosage for pain medication 24/7. The second pick line was for the daily antibiotic drip (Zosyn) for the pseudomonas. So many pills, I wrote on them so I would know what they were for, including the hiccup medicine. I was now officially a nurse!
A visiting nurse came 2-3 times a week. The supplies were shipped weekly, or as needed, from “Integrity,” a medical supply company out of Indianapolis. This included, the bags of antibiotic, pain meds, heparin (which is used for flushing the pick lines to keep them open), syringes, needles, the “little blue box,” batteries, and numerous bandages, swabs, etc. The Integrity Rep that I worked with was Mike. He was great. He was at my beck and call. He taught me how to use the “little blue box.” It was challenging at times. How can I forget the “beeping” (like fingernails on the blackboard), when it wanted attention. It could be something as simple as changing the batteries, as urgent as a plugged line, or a warning that the IV bag was empty andneeded to be changed. Once it was actually a problem with the equipment and they had to rush a new “blue box” by messenger from Indianapolis. That was a 148 miles drive for a courier.
Tom was more comfortable in the recliner, so that is where he stayed day and night. Because of the swelling in his legs he was supposed to wear those surgical stockings. His legs were HUGE, so once I took them off, I could never get them back on. Even more uncomfortable, his testicles were the size of softballs. The largest jock strap available was not even close.
The first appointment was July 29. The surgeon, Dr. Abaccassis, had previously told him to drink Boost. He did try, but was not hungry and had no incentive to eat or drink. The doctor made it a little more specific this time. He said, “You need to drink a minimum of 4 a day.” “Drink it or you will not live---you cannot eat enough to live.” Of course, there are other brands, but Boost was Tom’s choice. From that day forward he drank 4-6 every day. We kept an ice bucket full of Boost on the counter.
Meanwhile, he had one trusted employee that was trying to keep the muffler shop afloat. As an absentee owner, Tom did what he could from his recliner. But, after a while it was apparent, there was not enough business to pay the bills and pay the two employees. It was a difficult decision, but he decided it was time to close the business. He made phone calls to everyone he knew who might have an interest. He was successful in selling off much of the equipment and most of the inventory.
On Aug 9, the first good report from Dr. Anderson, Infectious Control Specialist. The Interventional Radiology reports show the liver is regenerating and the cavity is closing.Nevertheless, the next day he was back in Emergency with extreme pain. The pain medication was increased and he returned home.
On Aug. 17, report from Dr. Anderson was not good.Now hehad picked upa new bacteria, in addition to the pnesudomonas. Dr. Anderson administered the first dose of a new IV, and a RUSH shipment of the new med (Zyvox) was ordered from Integrety.
Aug. 18; back to Northwestern to see Dr. Mulcahy, the Oncologist. A long day of tests, he was so exhausted by the end of this day, he did not make it for the final CT. We had to call it a day. He came home with a new regiment of pills. After 3 days, the Zyvox was causing diarrhea. It was critical to continue with the Zyvox, so another medicine was added to counteract the diarrhea.
I was always careful to flush the pick lines, before and after use. But late evening on Aug. 20th, I was changing his IV, and when I tried to flush, I could not. No matter what I tried it was plugged. I panicked! We rushed to a local hospital, and they could not help. Called Dr. Mulcahy and she assured me he would be okay till the next day. The next morning we went to Northwestern to get the lines replaced.
I knew Tom looked thin and bad, but didn’t realize with all the suffering, he had aged so much that people were mistaking my son for my husband.
The trips to Northwestern gradually slacked off, and he was beginning to look more like himself. As he improved, he would take his IV pole to the front porch, sit in his chair and have a cigarette. His one pleasure of the day. My pleasure was seeing him get stronger, and occasionally sharing a big Gala apple. He still ate very little, but continued to drink the Boost.
From time to time, friends would stop by. His biker friends, Jeanne and Joey, from Michigan City, came by on their bikes one day. While they were here, my sprinklers went on, and before we noticed their bikes were soaked. Tom got such a kick out of that, and he never let me forget it.
It was around Thanksgiving, that Tom went out for the first time. He put on his big boy carpenters overalls (to hide his drainage bag), and his close friends, Frank and Alison, picked him up to go out for dinner. When I answered the door, there was this beautiful statuesque woman and her husband. Not the friends I expected of my Harley riding son. All the same I was so nervous; I wanted to tell him he couldn’t go. I even told them they should not keep him out too late. I felt as though he was my teenage son going out alone for the first time. I was a nervous wreck until I heard him coming in the front door.
Carolyn had come home to spend a couple of days with her Dad. One of her favorite things to eat was shrimp, so for her birthday, we took her to Red Lobster for lunch. She had changed a lot in the over 6 months that she had been at Shults Lewis. She wanted to be baptized. We drove her back to Shults-Lewis on a Sunday and she was baptized that afternoon.
Nov. 30th Tom had an appointment to see Dr. Abaccassis. He gave a good report, and replaced the large drainage tube with a smaller one. Said Tom would not need more surgery and the liver is regenerating nicely. If Tom stays clean two years is good. Five years is the milestone. (I know now that I heard it a different way.)
At last on Dec. 16th the drainage tube and bag were removed. On Jan. 14th the pick lines were removed and he was taken off all medication. For the first time in over 6 months, he was unrestricted, no lines, hoses or other apparatus, and it felt good.
John was home on furlough for Christmas. He and Tom had one outing. They went to Frank and Alison’s on New Years Day. The next day, we took John to Joliet. And, reluctantly, I let Tom go home.
He went for appointments once or twice a month for a while. In May he had an appointment to see Dr. Abaccassis. And one last MRI. The next follow up visit was to have been in November. Sadly to say he never made that appointment. He got sick again in October.
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He had been unable to keep anything on his stomach for a few days, and unable to have a bowel movement and his stomach was bloated. He didn’t want to go to the hospital. He was sure he would never come home again. On Friday, Oct. 21, 2005, he finally gave in to see his doctor. I took him to see his Oncologist, Dr. Mulcahy. She knew immediately the cancer was back. This time in lower intestine. She couldn’t get him into the laboratory on short notice, which meant he would have to come back the next day for lab work. Tom asked her to go ahead and draw the sample herself. I watched her stick a 4-5” needle in his stomach with no anesthesia and he didn’t wince. He asked about seeing Dr. Abaccassis, but she told him there was nothing he could do.
I thought I was through with the Northwestern parking garage. Always such a sad reminder. Day after day, driving round and round, hoping to find a spot before I got to the top. The up side was the enclosed cat walk. No matter what the weather, I did not have to go outside.
As luck would have it, an old friend was in need of a place to stay. So he was staying with Tom till he could find work and get on his feet. As his health would decline, what started as a favor would turn out to be a blessing.
By Sunday, he was much worse, to the point of almost lethargic. Took him back to the Emergency Room. He was dehydrated and was immediately put on intravenous. There was also a liter of fluid pumped from his stomach cavity. In addition, next day the Liver Team sent him for removal of acidities parasintesis (about 9 cu.in.). This showed (I think what they already knew) infection and cancer cells.
One evening Tom called Alison from his hospital bed. She and Frank were out with a number of friends that were also friends of Tom. He gave them the sad news, and I think by the time they hung up there wasn’t a dry eye in the house (except for Tom).
The official report came from Dr. Mulcahy. Malignant neoplasm biliary (tumor) blocking small intestine. Surgery was not an option. They were working on alternative possibilities, but in the end the only possible treatment would be chemo, and there was only a 5% chance that would help. Side effects likely would be much worse than any benefit. He spoke with Dr. Abaccassis, who believed in honesty and had never sugar coated anything. His advice was to go home and enjoy the time he has. Tom asked him how long. Three months.
In my mind, there must be someone, somewhere, that would have better answers. I began my search on line. At the top of the list was a doctor in Texas by the name of Merrill Kies. I spoke to his assistant, Gloria. She could tell me nothing without Tom’s records. I made arrangements to fax them, along with the complete history as I knew it.
I faxed all of it to Dr. Merrill Kies. In a few days I received a phone call from Dr. Kies, himself. He said that there was nothing more that he would be able to do. He knew Tom’s doctor and said he is one of the best.
An open ended tube (to ventilate) was inserted into his stomach. There was no bag. Anything that went into his stomach would be eliminated through this tube. While he was in surgery for the procedure, his room was robbed. He had taken checks, that he planned to pay some bills, and he had worn his favorite Harley “100 year anniversary belt and buckle” to the hospital. These were taken, along with his jeans, wallet, credit card and cell phone. The thief didn’t waste any time using the credit card at a nearby gas station. A few checks were also used. This needless to say was the lowest of low points. (Even though the bank account was closed immediately, 5 years later yetanother check was cashed.)
The next day I got him a new cell phone, before going to see him. He was so specific on the exact kind of phone, plus the back up battery. I know that does seem trivial, but because it was important to him, I would have done anything it took to give him exactly what he wanted. The anniversary buckle could not be replaced.
He could eat jello, ice cream, mashed potatoes, anything that could be eliminated through the tube. As the doctor’s assistant put it, anything he ate would be “just for fun.” It would go to the stomach and then be eliminated through the tube. By the same token, any oral medicines would also be totally useless. He was given morphine to absorb under his tongue for pain. Needless to say this did not work either. So pain medication would be given intravenously 24/7.
His nourishment was from what’s called a TPN. A white liquid, formulated specially for him, and administered intravenously via the infamous “blue box” and through a second pick line. Once again, all the supplies including the TPN would be coming from Integrity, and once again my old friend Mike was my rep. Most of the medication, including the TPN had to be kept refrigerated, leaving little room for anything else.
Unbelievably, in the beginning, Tom took care of the TPN himself, and it was quite an ordeal. The bag had to be warmed up for half an hour, a small little bottle of medicine had to be injected into the TPN via a syringe and massaged until it is completely mixed. Then attaching the line and threading it through the blue box was not a simple task. He did need help with flushing the pick line and the actual hook up. It took 12 hours to complete the infusion. A beep would sound when the bag was empty. At firstI was spending nights at my house and his house guest, Joe, was there to make sure the infusion went smoothly through the night, along with the disconnect in the morning.
The first couple weeks of November, Tom did well. He even got new (fashionable) rimless glasses. He was so proud of them, and I must say, he really looked good. He was also able to enjoy a few rides on his beloved Harley. Carolynwas home for the week end andTom had gottentickets to see Drew Carey Live. He took her to the Windy City for her 17th birthday, along with their driver, Joe, to see Drew Carey.
Crazy as it sounds, he wanted to visit a buddy in Kentucky, who was terminallyill. He also wanted to see the Grand Canyon. We were making plans to try and make that happen, with the trip to Kentucky as a trial run. I would rent an SUV, so there would be plenty of room for all of his paraphernalia. I knew, and he must have also known, one trip was pushing it, and the second was just his fantasy.
One day our Minister came by to see Tom. He had expected to find him in bed (crying). To his surprise, Tom was out on his bike and came in several minutes later. Tom got a kick out of that and said that he was sorry to disappoint him (laugh). Our Minister must have thought we had exaggerated.
As it turned out, his health declined so fast that he was not able to take either trip. He never wasted time complaining. In fact, he never brought it up again. I do believe he had enjoyed the planning and just thinking about it. He was also comforted by the fact that Kathy was spending some time with him and one evening she went with him to meet friends at the local watering hole.
By the middle of November, he was getting sick at his stomach, backache, weight loss, and itching that was next to unbearable. Called Dr. Mulcahy and even though she had just had an emergency appendectomy a few days earlier, she returned the call from home. She set up an appointment with her associate and ordered blood work from Anchor, the visiting nurse. To make things worse, Tom was having a tooth ache that had to be addressed. Fortunately, my dentist was able to immediately take care of that for him. They talked motorcycle. Sad and funny at the same time, he wound up trying to sell his precious Harley to the dentist.
A few days later Joe called me in the middle of the night. Tom awoke to find his bed wet from the leaking of the incision around the ventilation tube. I asked him to take Tom to Northwestern Emergency and I would meet him there. There was a hole in his intestines, and more than 2 liters of acidities was drained from his stomach.
He was admitted backinto the hospital. He posted a sign on his door which said, “NO WHINNING ALLOWED.” And HE never did! After a couple of days, he was moved to the 17th floor (reserved for terminal patients). A big corner room with lots of windows, a TV and VHS. You could have all the visitors you wanted, watch movies, and pretty much do whatever you wanted. He would put on his robe, take his IV pole, and go downstairs (outside) and have his smoke.
His daughter, Carolyn, was with her Mom and step dad for Thanksgiving. They brought her by the hospital. Her Mom had made her a belated birthday cake, and she brought some to the hospital. Tom had a few bites. That was the last thing he ever ate. The one thing he craved was banana popsicles, and I made sure there were plenty of those in the refrigerator there. Carolyn and I stayed the night. We all stayed up late and watched The Green Mile. I remember how beautiful the City looked that night from the big windows.
On Thanksgiving day, Tom got a notion that he wanted to play UNO. The gift shop was closed. Where do you find a store to buy UNO on a Holiday? The weather was warm. Not the typical Chicago weather. So Carolyn and I took a walk to find a store. We came back with the game, and we played UNO.
On November 28, Tom came home. This time, I would be staying at his house. He could no longer eliminate the fluid (poison) himself. Instead a machine had to be hooked up a few times a day (as needed) to suction it from his stomach. As the pain increased, so did the pain medicine.
After he came home, the only thing he took by mouth was iced tea. I could not think of cooking (the aroma) with him sitting there in the family room, right next to the kitchen. One day Joe said to me, “You know we have to eat,” and, I said, “I know.” After that, I fixed the meals. He just drank his ice tea and never let on that he missed eating. He never said, “that smells good.” That would have broken my heart.
If we were going to eat, I had to shop.One dayI went shopping and when I got back, there was a bunch of his friends in the kitchen. Just a normal bunch of guys sitting around talking, laughing, and smoking cigars.No one would have guessed the severity of Tom's illness. One of the fellows was a good friend who had recently moved to Florida. He knew how much Tom loved his wood burning fireplace. In the winter he always had a fire going. He loved the smell of the wood. A few days later a load of fire wood was delivered. He knew it was from his dear friend.
After a while, Joe needed some time off. I understood, so we agreed that he would take Saturdays and Sundays as his personal time. I, myself, did not want any time, as long as he was there when I had to go out to do shopping, pick up meds, or on rare occasion when I needed to go home for some reason.
I had no problem negotiating the 7 steps from the kitchen to the family room some 30+ times a day, nor did I get tired. But with the laundry going constantly, I was glad it was just a few steps through the doorway from the family room.
We were finally paying for all the nice warm weather we had in November and the beginning of December. It was COLD and we had our fair share of snow now.
By the second week of December, Tom could no longer be left alone. He did not realize that he was not strong enough to make it to the bathroom, and he often forgot that he was hooked up to IV’s and tubes. We took shifts. Joe took over from 10:30 PM until 7:00 AM. He would go to bed when I got up at 7:00. That was when I realized I could not deal with any other distractions.I called my brother tocome pick up Sassy.
Randy had been working a 12 hour day, plus an additional 2 hour commute time. His work being somewhat weather related, on Dec. 16th he was laid off. Thankfully we couldnow go to 3 shifts. I took days, Joe the second and Randy the third shift. One morning I was awakened by laughter coming from downstairs. I crept down and peeked into the family room, and the 3 of them were just enjoying a moment. I went back to bed.
Randy had been a lifelong Indianapolis Colts fan. The excavating for the new Colts stadium was taking place. Tom had been able (through his wife) to get part of a big rock from the excavation site. One day a friend of his delivered this big heavy box. Turns out it was this rock from the Colts’ stadium, that Tom had polyurethane coated and painted with the Colts insignia, as a surprise for his brother.
More than once, Tom told me how glad he was that I had Sassy to keep me company. Again, his concern, not for himself, but for me. Only once did he acknowledge his own fate. Otherwise, he never complained. When he had company, he could find the strength, somewhere, to greet them with a smile. Always the entertainer and the jokester.
By now there were constant calls to Dr. Mulcahy, with a new dilemma every day. No call went unanswered. What a wonder to haveunquestioned access tosuch wonderfuldoctors. He never complained of the pain, he would just say, “oh boy, oh boy, oh boy” and you knew. Wewould increasethe pain med.
Tom, an animal lover, usually had a Doberman. Average lifetime for a Doberman is 8-10 years. So, he had the heartbreak of loosing a few. His last dog was an Old English Mastiff. At this time, however, he only had two beautiful cats. One solid black and one solid white. He didn’t know who was going to take care of them and he was concerned. It was a relief whenJoe decided he would take them. Joe had a 12 year old son that Tom was very fond of. He was crazy about Tom’s collection of dragon statues. Tom gave them to him.
His most cherished possession was, of course his beautiful black and chrome, Harley-Davidson. None of his Harley friends needed another bike, especially since there was still an outstanding balance due. His biggest desire was that his brother would take it. He had tried through the years to get Randy interested in riding. (It just was not his cup of tea.) For Tom riding was like therapy. He could ride for hours, alone, or with friends.
John was on furlough and Carolyn was home for the holidays. They both stayed Christmas Eve night and Christmas day. Earlier I had helped Tom pick out, from his inventory of watches, one for each of them. It would be their last Christmas and I was hoping Tom would be able to, somewhat, participate. Although I waited until he was awake, hoping that he could, he just could not understand what was happening.
Althoughhe had a hospital bed for in the family room, he remained in his recliner until Dec. 28. He did not leave the recliner without a fight, but it was time. The 29th was his birthday. I could not, and did not, say happy birthday. There was nothing happy about that day. I don’t know if he realized it was his birthday.
He had outlived the pain medicine. He had his last TPN feeding on Saturday night. The next night he was aware enough to ask for it, but I explained we were not going to do that tonight. He never asked why. He died early Tuesday morning, Jan. 3, 2006.
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To my dismay, Tom had a number of tattoos. Funny thing, I never liked tattoos, but I love the fact that John and Carolyn each nowhave a tattoo as a tribute to their Dad. Even his conventional brother has one. I am the lone hold out, but I hold him in my heart every day.
Randy did keep the Harley. In a way I think he did it for Tom. And, although he will never be the avid biker that Tom was, he does ride. He has a buddy that he rides with, and, weather permitting, they sometimes take some pretty lengthy rides. Tom would be proud.
Tom’s good friends, Alison and Frank, are now my good friends. We talk several times a week, and go out to dinner on week ends. We reminisce and tell stories about Tom. When I hit a rough spot, Alison is always there to listen.
My precious Sassy went to doggy heaven on Jan. 18, 2011. I now have Lucky, an 11 pound Silky. She too is precious, and never lets me out of her sight.
Tom was always brave, courageous, funny, and compassionate of others. I will never say I could have done more. I did everything I could to give him whatever he wanted. I will be forever grateful that I was mentally and physically able to be there 100% for him. What Mother would not want to be able to say that. I cherish every moment that I spent with him. It was not a hardship. It was a blessing.