The Warrior Blood Within: Triston's Story

By Cynthia Smith

This biography is about Triston Edward Smith. He was born on Sept. 4,1997 and died on April 29, 2017. This book was written by his mother, Cynthia L. Smith as a tribute to Triston's life. By telling "His Story", it is intended to bring honor and remembrance for the great, brave warrior that he was. His struggles throughout his life, as well as the good times, will be told for generations to come by sharing these precious memories. He was a kind, gentle soul truly loved and respected by everyone that knew him! This book will inspire others to love life and never give up!

• Language: English
• Publisher: BookBaby
• Release date: Dec 21, 2022
• ISBN: 9781667883397

Book preview

THE WARRIOR BLOOD WITHIN

The home pregnancy test done on New Year’s Eve, 1996 was positive! The doctor confirmed on Jan. 2, 1997, the pregnancy. After 14 months of trying, we are finally going to have our first baby!! We had a good pregnancy with minimal nausea, sickness, and swelling. Our first ultrasound was great and showed us that we were going to have a baby boy! We wanted a unique name and decided on Triston Edward Smith. We got the name Triston from a movie called Legends of the Fall and it was Brad Pitt’s character name in the movie. We spelled our Triston with an o instead of an a. Triston’s middle name Edward is also his Dad’s middle name, Charles Edward Smith Jr.

The due date was Sept. 2,1997, but Triston wasn’t born until Sept. 4th. The labor and delivery were complicated. I was told I wasn’t pushing correctly/hard enough, so the doctor told the nurse to turn my epidural pump machine off as he left my delivery room. When he later returned, he realized that the problem wasn’t from my pushing. Triston was stuck! He was very large and I am very small. The doctor had to use forceps immediately to help get him out, which was very scary and painful. Triston was born at 5:54pm on Thursday, Sept. 4,1997, and thankfully he was okay!

Because the doctor had ordered my epidural pain medication pump to be turned off, instead of just turning it down, I had no pain relief other than a shot he injected in my vaginal area. The Anesthesiologist that had inserted the needle between my bones, through the ligaments, and then through the membrane that surrounds my spinal cord to thread the small catheter into this space to receive the combination of a local anesthetic for numbing purposes and a narcotic for pain relief had to be paged to return to my delivery room to restart the epidural pump because it had been turned completely off! No one else could legally restart the pump! But before the Anesthesiologist was available to return to my room, the delivery doctor had to start the 38 stitches in my vaginal area because I was losing a lot of blood. He gave me another shot down there for pain, but it didn’t help any. I was so scared and thought I was going to die without even getting to hold my son.

The doctor was almost done with the 38 stitches by the time my epidural pain medication pump was restarted. I finally got some pain relief but started freezing and shaking uncontrollably. That was extremely difficult as my thoughts of dying became worse.

The doctor and nurses covered me with several heated blankets and put something else in my IV. Finally, they got everything under control and my condition stabilized.

Then, I finally got to hold my Triston. He was so precious and beautiful, just like an angel! He weighed 8 lbs.13oz. and was 21and 1/4 inches long. No words could describe the joy and happiness he brought to us!

It was a very uncomfortable and painful situation for me for several weeks after delivery which made it difficult to walk or sit down. I was also trying to breast feed Triston because I knew it would be healthier for him, but I only did the breast feeding for 10 days because I couldn’t produce enough milk for him. So, we had to start using baby formula.

When Triston was around 2 months old, there was some blood in his stool. The doctor said it was a milk protein allergy and we ended up having to change his formula 4 times.

The doctor also noticed Triston’s left eye turning in towards his nose at 4 months old, but it was difficult to determine the full extent of this problem at that time due to his age and not being able to get an accurate, detailed eye examination. Triston was a happy baby with a smile like sunshine. He was my purpose for living!

At 5 months old, Triston developed a slight cough. The doctor ordered an x-ray that showed a spot on his lung looking like pneumonia. He was given an antibiotic. We thought he was okay after taking the antibiotic.

When Triston was 8 months old, we noticed him crying more when we held him or turned him a certain way. We had gone to a Sunday morning church service and his Dad was holding him. He turned Triston around to reposition him and he started crying loudly. We had no clue what was wrong. His Dad took him outside and tried to calm him. After putting Triston in his car seat, he stopped crying.

The next day after this had happened, I gave Triston a bath and laid him on the bed to finish drying him off with his hooded towel. At that time, I noticed his left side was bulging out and blue as if it were bruised. It was a very frightening time.

I immediately called his pediatrician and took him to her office. She didn’t know what was wrong with him and ordered x-rays to be done immediately. I took Triston over to the hospital to get x-rays. The x-rays showed his ribs were crushed. The results were very concerning.

Triston was admitted to Johnson City Medical Center Hospital (JCMCH) in Johnson City TN. for more tests with IV’s, barium, blood draws, and finally surgery. The doctors did not know what was wrong. A cancer pediatric doctor from St. Jude’s was called in to look at the imaging scans. He said Triston’s 8th left rib looked like it had been gnawed (chewed) on, but this wasn’t a form of cancer. This was a case out of his specialty. Triston’s left lung was stuck to his rib cage, along with a mass in both lungs and a mass behind his heart.

The pediatric surgeon went in and took an inch of his 8th left rib and a biopsy from his left lung to be sent off for testing. Triston had to stay in the hospital for several weeks. This was very difficult for him, and he got bored easily. We were very worried about him and the days of waiting on the results were extremely difficult.

The report came back that he had Aspergillus, a serious fungal infection. Triston had to have a Hickman line, which is a central venous catheter placed in his chest so he could get IV anti-fungal meds immediately. The next question was how could Triston have gotten this fungus in his ribs and lungs?

The infectious disease doctor sent Triston’s blood samples to CA. for specialized testing of a disease that she had recently read about, but she didn’t tell us about this disease yet. We waited almost 2 weeks, while Triston was still inpatient, on these devastating results. The infectious disease doctor came in and told us that Triston had Chronic Granulomatous Disease (CGD). This is a rare, x-linked inherited immune system defect characterized by recurrent infections. The defect in the immune system of patients with CGD is related to the white blood cells inability to kill certain kinds of fungi, yeast, and bacteria that cause infection. In essence the white blood cells do not produce the peroxide needed to properly function. Patients with CGD often suffer life-threatening infections of the lung, liver, skin, bone, and/or lymph nodes. These patients may also develop autoimmune conditions and bowel, bladder, eye and lung disease from Granulomatous. After hearing this horrible news, the infectious disease doctor referred us to St. Jude’s Hospital in Memphis, TN.

Triston was finally discharged from the hospital but required IV infusions at home 3 days a week from a home healthcare nurse, blood draws weekly, and doctor visits. We were very fearful of what was ahead for Triston due to this diagnosis, but we were so happy to have him home again with us now. We requested prayers for Triston from everyone everywhere.

Our local infectious disease doctor contacted the specialist at St. Jude’s in Memphis, TN. and an appointment was scheduled for Triston on Sept.12,1998.

Triston got to celebrate his 1st birthday at home on Sept. 4th, 1998. We had a great 1st birthday party for Triston with family visiting, opening presents, and of course lots of playtime for him! Triston really enjoyed getting a ball pit, a ride-on fire truck, a walker car, a small laptop computer, and an electronic phone. Triston’s Dad and I made a 1st year birthday card for Triston:

T- is for the Thankful Heart we have when we look at you!

R- is for Rejoicing that you are a part of our lives.

I- is for the Ice Cream that you love so much!

S- is for your Smile & Singing that we treasure.

O- is for your Outgoing Personality that melts everyone’s heart.

N- is for Never giving up.

We took Triston to St. Jude’s Hospital in Memphis, TN on Sept.12, 1998, for his first visit with the infectious disease doctor there.

She said there should be a cure for CGD within the next 5 years and she did not recommend a bone marrow transplant for Triston at this time. She increased Triston’s IV meds for the Aspergillus infection from 3 days a week to 7 days a week. Triston was also getting blood transfusions regularly for his low hemoglobin, and 3 shots weekly of interferon-gamma to help his white blood cells fight the fungal infection. The doctor ordered CT scans of his body and an MRI. We were at St. Jude’s with Triston for 1 and a 1/2 weeks getting IV infusions and scans done on this first visit

After several long trips back and forth to Memphis, TN and 6 months of IV Amphotericin- B, nicknamed shake and bake for its extreme effects on the body when administered, (Triston’s fungal infection was still there. We were afraid that Triston was going to die if we didn’t try something different. This fungal infection wasn’t going away after being on this very strong IV antibiotic for 6 months. This antibiotic is also very harmful for his body.

A family member read an article in the associated press, about a child with CGD going to Georgetown University Hospital in Washington, DC for a umbilical cord blood transplant. She passed that information along to us. So, we contacted the nurse there and set up an appointment at Georgetown University Medical Center for Triston on Nov.16, 1998 to see a transplant doctor.

The doctor there told us that the umbilical cord stem cells are safer than regular bone marrow stem cells because they have no memory since they have not developed in anyone’s body yet. The success rate of this kind of transplant is about 80%. We spent 3 days at the hospital with Triston getting blood work done, CT scans and lung tests before going back home to TN.

Before the transplant could be considered, Triston’s body would have to be infection free. It would take another 5 months of IV drugs, scans, surgeries, and white blood cell transfusions to get Triston ready for what we hoped would cure our son of this life-threatening disease.

Triston was admitted to Georgetown Hospital on Dec.2,1998 to start receiving white blood cells every day for 3 weeks from other donors through his IV Hickman catheter and daily shots to boost those white blood cells to make them work better. These daily white blood cell infusions would start a war in Triston’s little body to fight the fungal infection, and this would make him feel the sickness more.

Triston was discharged from Georgetown Hospital on Dec.24, 1998. We took Triston to the Ronald McDonald House in Fairfax, VA for that night. the next day, we had Christmas Day lunch at the Ronald McDonald House before driving back home to TN that evening.

We celebrated Christmas at home on Dec.26, 1998. We were so happy to be home again with Triston. We hope and pray that this cord blood transplant will cure him of his CGD and he won’t have to suffer anymore.

We took Triston back to Georgetown Hospital on Jan.14,1999 to start preparation for transplant. Triston had 3 surgeries, his stem cells collected and stored, CT of chest and head, ultrasound of spleen, bronchoscopy procedure on lungs, and IV meds.

We brought Triston home on March 15,1999 for 1 month to treat the CMV (Cytomegalovirus) growing in his lung tissue. This had to be gone before we could do the transplant.

We took Triston back to Georgetown Hospital on April 14,1999 to prepare for transplant with chemo and other IV drugs. He was in an isolation room with an outer room connected to it. This was for all doctors, nurses, and anyone else that needed to come in. The protocol involved using a surgical scrub brush with soap on your hands and putting on a gown, mask, booties over shoes, and gloves on before entering the inner transplant room where Triston was.

We brought a mini frig for the outer isolation room and requested a small hospital bed for it. We also got a couple of chairs for sitting in the outer part. That isolation room is where his dad Eddie basically lived while Triston was in transplant. We wanted Triston to be able to have some toys and activities to help pass the time for him. We brought him a new Winnie the Pooh stuffed animal, which he loved to sleep with at home. We brought a few new toys and some of Triston’s favorite kid videos, including Barney and Teletubbies. Everything had to be new or completely germ free before entering Triston’s room. Because Triston enjoyed the computer at home, we decided to buy a new one for his transplant room. His Dad unboxed it in the outer room and took it into the transplant room and set everything up. He programmed the computer and put some games on it, including jump start baby. The inner isolation room had a roaring, loud noise from the large filtration system to keep the room sterile.

Triston got the cord blood stem cells on April 28,1999. The Pastor from the church that we attended in TN came to the hospital the day of the transplant to have prayer with Triston just before the transplanted cells started into his body. We also had my mother who he called Nana and other family members visiting some during the process.

Triston was extremely sick. It was very difficult to watch him suffer. Triston lost the mucous lining in his throat and esophagus area. It was coming out of him with horrible diarrhea. He couldn’t eat and his skin was sore to the touch.

We waited day after day, week after week, for his blood count numbers to come up, because he was neutropenic. This means the neutrophils (a type of white blood cell) are abnormally low and he is more susceptible to infections and death. It was an agonizing time for him. We just wanted to take all of his pain away.

Triston’s condition got worse, and he needed oxygen to breathe, but he wouldn’t wear the nasal cannula. So, we took turns holding him in one arm and the large oxygen tube with the other arm/hand close to his nose and mouth area for several days.

Triston’s condition kept going downhill and he had to be moved to ICU. The doctor told his Dad and I that Triston would not make it through the night. Our hearts were completely broken. We held him in the ICU room and the oxygen tube directly on his mouth/nose area for hours as we watched him struggle to take each breath. Eddie ask Triston if he knew who Jesus was, and Triston shook his little head yes and pointed to the upper corner of the ICU room. We then had a family prayer. Triston’s Dad then thanked God for giving us Triston whom was the greatest gift and blessing we could have ever hoped for. We then let go our our selfishness and handed Triston back to God to take him home to heaven. It was less than an hour later that Triston miraculously started to recover and was no longer on his death bed.

Triston’s condition starting drastically improving during the next hour. The doctor and nurse entered his ICU room thinking Triston needed to be intubated, and were shocked to see Triston’s improvement. It was truly a miracle!

Triston went back to his transplant room the next morning. Immediately he started engrafting cells and his neutrophils were coming up. We thought the new cord stem cells were working. The doctor had to perform a bone marrow biopsy on Triston which was horrifying and painful. This procedure required him to be awake, which was nothing but torture for our son. In summation the transplant failed but he miraculously lived and engrafted his own system back without being given his own cells back. This is almost virtually impossible and rarely never happens. This means he still had CGD but was going to live. Again this is extremely rare for transplant patients!

After 75 days in the hospital, Triston was discharged. It had been a very long and painful ordeal for Triston. We left the hospital and went to the Ronald McDonald House in Washington, DC to live, which was across town from the hospital and was about a 45 minute drive. Triston’s Dad would drive to the Ronald McDonald House to be with us on weekends, and then back home to TN for work during the week.

Triston had to go back and forth to the hospital every other day for IV meds and blood products. He was so happy to be an outpatient now. He enjoyed running around freely and playing in our small apartment at the Ronald McDonald House. He slept in a twin size bed that had a cool side railing made for it that matched the head and foot boards. It was a perfect bed for him and he really liked it. The apartment also had a small stackable washer/dryer combo, which was a very special bonus. I could do small loads of laundry and still be right with Triston.

One of the things Triston liked to do when we were at our apartment was to watch the Back Street Boys video on our TV while singing and dancing around! It was great to see him having some fun! He also had a bowling movie that he liked to watch over and over!

We finally made it home to TN in August 1999. It had been a long time away and Triston was thrilled to be home! We all had missed being home together. We put a Hepa-filter in each room of our home to help keep the air free from bacterial and fungal particles. Anyone visiting us would enter downstairs through the garage door, take off their shoes, and wash their hands in the bathroom downstairs before coming into the house. Anyone with symptoms of sickness or allergies were not allowed to visit. We still had to keep a close eye on Triston’s condition and everything in the house had to stay clean. He was essentially a boy in a bubble.

Triston got 3 baths a week due to his Hickman catheter that was surgically placed in his chest into an artery with the tubing hanging out of a small hole in his chest. This area was very delicate and often red and irritated. After Triston’s bath, it would require 2 people to change and clean this area. One person would hold him to make sure he sat completely still and did not touch the exposed area or tug on the tubing. The other person cleaned the exposed area and the catheter tubing with Betadine swabs in a circular motion starting at the small opening in his chest and moving outward, then repeat exactly with alcohol swabs to gently removed the Betadine. After that, the sterile patch was carefully placed on his chest over the exposed tubing hole. We tried to place the patch a little different each time by slightly turning it sideways, which helped some with his delicate irritated skin in and around that area. It was extremely important to keep this catheter area and small opening in his chest clean, covered, and dry to avoid any infection. This process was tedious, and the double catheter tubing had caps on the 2 ends that also needed to be cleaned, changed, and flushed.

Triston’s home healthcare nurse came once a week for blood draws and IV meds, she use to come over 3 times a week. But Triston’s insurance would only pay for the once a week visit now. The other times during the week, I gave him his IV infusions. I flushed his IV catheters daily, which was the protocol.

We continued to travel back and forth for check-ups at Georgetown Hospital in Washington, DC for the next 9 months. Triston also had lots of doctor appointments at home in TN.

Triston celebrated his 2nd birthday at home on Sept. 4, 1999. The birthday party theme was Barney, complete with Barney cake, new Barney videos, and a visit from Barney! Our home was full of family members, gifts, food, and fun. Triston had a great time opening presents, playing, and dancing with Barney. Some of his favorite gifts were a red battery powered Jeep, a bowling set, a bubble lawn mower, and a wagon! After everyone left, Eddie let Triston ride and drive his red Jeep downstairs in his playroom. He would also get to start riding his Jeep outside and keep us very busy chasing after him!

Triston was very happy to be home again where he could sleep in his car bed, play with all of his toys, or just run around freely! Other than going to doctor appointments or hospital visits, Triston didn’t go to public places for a long time. My mom, Sharon came to see Triston every week, he called her Nana / B’ Nana. My Dad, Doug visited every week, Triston called him Paw. Eddie’s parents, Charles and Anita usually visited each week also, Triston called them Gran-Gran and Paw. My grandma Lois came over twice a week to play with Triston, he called her Lolo. My aunt Ootcie would also come over to play, Triston called her Oots. My Granny, Gladis visited whenever possible, Triston called her Yang-Yang. Other awesome names that Triston used were wa-wa for his pacifier, fry-fry for French fries and of course Dada for Eddie, Mom-ma for me! Some of his favorite songs at age 2 were: O’ McDonald, You are my sunshine, and Jesus loves me. Triston was playing Jump start baby, along with other games on his computer at age 2 and was doing a good job!

Triston would continue IV medications, oral prophylactic medications, and 3 shots per week to try and keep him infection free. He would keep the IV double line Hickman catheter in his chest for his IV meds and weekly blood draws for now.

Triston’s condition was stable, and he was starting to grow and learn more each day. We love him so very much and are so glad he is doing well. We enjoyed our Thanksgiving meal at home and had visits from Triston’s grandparents.

When Christmas time came, as always Triston helped us decorate the Christmas tree. He also gave me some help with putting gifts under the tree and shaking some of them for fun. He was trying to figure out what his gifts were! Triston enjoyed having several family visits before Christmas and more visits on Christmas Day! It was a time of joy to celebrate and see Triston singing, laughing, and playing! Some of his presents were: indoor bowling alley, a crawl tunnel, a ride-on choo- choo train with track, a stuffed, singing Rudolf toy, little people’s farm and garage, and back street boys’ videos.

Triston loved to play downstairs in our den that we converted into a big playroom for him! He had lots of room for his ball pit, basketball goal, crawl tunnel, painting easel, indoor slide, and his indoor bowling alley! His ride-on train with track was set up in our kitchen and his red battery powered Jeep would be for outside use on warm days ahead.

YEAR - 2000

Because Triston had a cord blood transplant with chemo, all his immunizations would have to be given again, just like he was a newborn. This tedious process would start this year and each shot would need to be given separately by a nurse so he could be watched closely for any adverse reactions. It would take the next few years to get caught up on all his much-needed immunizations. The MMR would also be divided into 3 separate shots over a month between each one. We found the mumps and measles shots separately but couldn’t find the rubella vaccine. I called different places and was getting very concerned. One of Triston’s nurses asked me to contact the pharmacist at Val-U-Pharmacy because she had heard he can often get medications that are difficult to order. So, I called him and told him about our situation with Triston’s condition and the need for a single dose of the rubella vaccine. He told me not to worry and that he would find one for us.

About a week later, the pharmacist called to say he had the rubella vaccine for Triston. It was a huge relief and extremely helpful for us! I went to pick it up and brought it home to put in the frig until the home health nurse was scheduled to come to our house and give him the vaccine.

In March, 2000, Triston’s IV Hickman lines would flush but not return blood. This would require a trip to St. Jude’s clinic, which was now located at Johnson City Medical Center Hospital, Tn. We lived 10 minutes from the hospital, which was very convenient. The nurse injected a drug called TPA into the lines slowly and carefully. This helps unclog the issue so his lines will work properly for blood draws, IV medications, or blood transfusions. This unclogging process usually takes 2-3 hours. If this process didn’t work, the IV Hickman would need further treatment and possible removal.

The nurse was able to get Triston’s IV lines unclogged today, thank God. Then he had blood work done, including blood cultures for bacterial and fungal infections. The doctor also ordered chest x-rays because Triston had stridor (a harsh, vibrating noise when breathing). He also has a bad rash on his bottom area.

The initial results came back from the blood work, of course the blood cultures will take several days to complete to get results. The chest x-rays showed pneumonia in his right lung. The doctor ordered IV antibiotics for me to give Triston every 12 hours at home for 10 days. Also, a cough medication to help him get some sleep at night and a topical medication for his bottom.

Two weeks later In April, 2000, Triston would have more x-rays of his chest (lungs) because the coughing and wheezing (stridor) were still present. Also, to check his IV Hickman catheter placement to make sure it was still correctly located in his chest artery because the lines weren’t working properly again. The x-rays confirmed correct placement of his IV Hickman, so the doctor ordered more TPA to be injected into his lines. After 2 hours of waiting, the lines were unclogged and working again. We also had to collect stool from Triston and send it off for a complete analysis.

The doctor also ordered a CT scan of Triston’s chest and another 10-day round of IV antibiotics for me to give him at home. Triston was still having skin breakdown on his bottom area and a prescription was needed to get a special paste compounded from the pharmacy for this. Our regular pharmacy was Wilson’s Pharmacy. Their infusion department made his IV infusion medications and antibiotics. They would deliver all of Triston’s medications, along with all IV tubing, machines, and supplies as often as needed. The pharmacy compounding department made his butt paste every month and delivered it too. All departments of the pharmacy, along with the pharmacists and technicians were very helpful with answering questions about his IV infusion therapy that I did frequently at home around the clock when needed. One day I couldn’t get the tubing primed correctly to put into the IV machine to start infusing one of Triston’s antibiotics. I finally just took the entire tubing kit and threw it away because it wasn’t going to work correctly. I opened another tubing kit and was able to prime it correctly and get Triston’s hour long infusion treatment going. Then I called the infusion department at the pharmacy to tell them I had messed up a tubing kit and thrown it away, which would make us one kit short for the week because insurance only pays for the exact amount needed per week. I told the technician I would pay for the extra one when it would be delivered the next day. To my surprise, she told me not to worry about it! This was great news, especially since the tubing kits were expensive!

In May,2000, my aunt and I had to fly with Triston to New York City to see his transplant doctor. The doctor had moved there from Georgetown Hospital in DC. This would be a Med flight on a small 4-seater plane through an organization that helps sick children. It was a very stressful time. My aunt had never flown before and got a panic attack from feeling claustrophobia. She was grabbing for the door and trying to open it as the small plane was moving down the runway in preparation for takeoff. I told her to calm down and not try to grab the door! The pilot, which was literally sitting right behind my aunt told her to move her head up toward the ceiling and breathe the air coming through the vent. He told her she needed to sit still and close her eyes, if necessary, but that everything was under control. She finally got calmed down and started breathing more normally. That was a bit scary!

We flew to New York City, and reserved a limousine to pick us up at the airport. We went with the limousine instead of a taxi because of Triston’s health concerns. The limousine had leather seats and the whole inside was sanitized. Plus we got a good deal because of the situation. The driver took us to the Ronald McDonald House downtown NYC, and dropped us off.

We checked in and went to our room, which had WET carpet in it. I immediately went back downstairs to the front desk to ask for another room. The manager said they had basically just cleaned the carpet, which really sent me into orbit. I explained Triston’s health issues and how this was dangerous for him. Even though all of this had already been discussed in great detail on the phone when I made the reservation to start with! After being told they were basically full, and a short debate, we got another room.

The next thing was figuring out something to eat. Some Ronald McDonald Houses have things in the pantry of the community kitchen that you can cook and eat. We walked around a bit to check things out. When we made our way to the kitchen to look around for food options, we were surprised to find a woman that was staying there with her child probably for awhile, chopping up raw meat. She had the bloody meat lying all over the sink and counters, dividing it into different sections. It was a huge, nasty mess. She wasn’t being careful either, as she was slinging it around. We weren’t even sure what kind of meat this was, the whole thing was very bizarre. We had seen enough and went back to our room.

Since NYC was crowded and we really knew nothing about getting around, we decided it was best for Triston’s health to stay put and order some food. I knew he would eat McDonald’s, so I went to the front desk to find out what restaurants delivered there. We were in luck, and McDonald’s was our dinner delivery!

The next morning, we went to the Children’s Hospital for Triston’s check-up and we ate there too. We were at the hospital most of the day. Then we went back to the Ronald McDonald House for the night.

The next day, we checked out and were picked up by the limousine to head back to the airport. After arriving and finding something to eat, we met up with the pilot and got ready to fly back home with Triston. After getting settled inside the very small plane again, my aunt was more stable this time around thankfully! After taking off, the sun was shining so brightly through the window, it was really bothering Triston by shining in his face. The pilot wanted Triston to stay seated in his seat with his seat belt on the whole time. So, my aunt decided to try something to block the sun from Triston. She took a diaper out of his diaper bag and opened it and the sticky flaps at the top sides, then stuck them to the window. It worked and Triston calmed down! We landed at Tri-Cities Airport safely and Triston’s Dad was waiting on us. We were very glad to see him and be back home.

We decided that traveling to NYC was too risky for Triston’s health and trying to get back and forth would always require flying. It was time to find a specialist in Chronic Granulomatous Disease (CGD) for Triston.

Triston had been to the eye doctor several times for his left eye turning in towards his nose and not being able to follow objects with his left eye. After dilating his eyes and an examination, the eye doctor said it looked like Macular Coloboma. This means that Triston’s macula didn’t develop normally, leaving a gap or space in that area, which causes reduced vision. The eye doctor wanted to try glasses to help Triston’s vision. So we decided to give this a try. Triston wasn’t very open to glasses and would only wear them for a short amount of time each time we put them on him. But we kept trying each day.

Triston had another fever on Aug. 14, 2000, and was seen by his pediatrician. Then to St. Jude’s Clinic again to get more TPA for his IV Hickman catheter lines that were not giving blood return. After 2 hours, the nurse was able to draw blood for the much needed bacterial and fungal cultures. We would also collect Triston’s stool again to send off for testing.

Triston’s condition was stable with doctor visits, IV meds done at home, and home nursing visits for blood draws and immunizations.

Triston celebrated his 3rd birthday on Sept.4,2000, at home with lots of family and gifts. Triston was into bowling games at home and his birthday cake was decorated with a male figurine holding a bowling ball in his right hand and there were10 bowling pin candles lit up across the cake over from the figurine. Triston loved his cake and enjoyed everything about his special day! Some of his presents were: a paint easel with paint, brushes, cups, and paint bib; indoor slide; fast food play kitchen; TV with CD player for his bedroom; indoor basketball hoop for bath time; and a Barney tree house!

Triston would have another catheter issue on Nov.21, 2000. The St. Jude’s Clinic nurse would again use TPA and get his lines un-clotted.

We celebrated Thanksgiving Day at home with turkey and ham. Triston also enjoyed some family visits and play time that day!

Christmas 2000, Triston’s condition was stable, and we had lots of family visits. Some of Triston’s presents were Scooby-doo indoor tent and sleeping bag, medical cart, play-doh, CD Rom, robot dog, and a remote-control truck and airplane.

2001

Triston was doing good with the start of 2001, then he started throwing up when riding in the car and some at home. Then he started projectile throwing up. I took Triston to the pediatrician who called a Gastroenterologist office to get an appointment for him. Before the scheduled appointment time, Triston’s IV Hickman Catheter comes out! It must have been loose up inside his chest. This wasn’t good, especially because he would need more tests and medications for his stomach issues.

The pediatric Gastroenterologist schedules an endoscopy for Triston the following week, Feb.14th, 2001, and at Bristol Regional Hospital where she did procedures. We had never been to this hospital, which was 45 minutes from our house.

Mom and I took Triston to the hospital early that morning. The nurses had a horrible time trying to start an IV on Triston. Having a Hickman Catheter was so much easier for him because he didn’t have to be stuck all the time! They finally found a nurse who was qualified to start his IV, after sticking him multiple times and bruising the back of his hands and arms. It was a horrible time and Triston was so upset from the whole ordeal. But that was just the beginning of the very bad day. The doctor ordered the drug Versed to put in Triston’s IV. This medication was supposed to make him relax and sleep for the endoscopy procedure, but it had the opposite reaction on him. He was screaming, crying, and trying to climb out of the hospital bed that looked like a crib. He was extremely upset and agitated. It was a difficult situation, and I was very upset with the way things had been handled all morning. Putting Triston through of all this was ridiculous.

The doctor finally ordered him a different drug and was able to calm him down and he finally drifted off to sleep. Then, the doctor performed the procedure.

After the procedure, the doctor said Triston had Distal Esophagitis with ulcers, swollen Antrim, and retained food. She said he would need IV antibiotics for at least 14 days.

So, we had to take him to JCMC hospital to have a Picc line put into his arm right away, which was another 45 minutes from there. Triston threw up in the back seat on the way to JCMC Hospital.

When we arrived at Johnson City Medical Center, in Johnson City TN (JCMC), the nurses could not get a Pic line in correctly, and Triston was again stuck several times! It was a continuing mess and poor Triston was so sick. The pediatrician surgeon was contacted and decided to take Triston to surgery to put another Hickman Catheter in his chest that night. So, we had to go to the pediatric unit and be admitted. We had to sit in a pediatric patient room for hours waiting for Triston’s time to go to surgery. Triston had a horrible day already, and he could not be calmed down. They wouldn’t give him anything to eat or drink, it had been more than 24 hours now without anything! He screamed and cried for hours, and I do mean hours. He was disrupting the whole unit. It was extremely sad that he had to go through all of this! Mom and I tried to console him, but he was beyond any of that. All we could do was wait with him and pray. Surgery time finally came, and Triston would get to finally sleep some during surgery. When he got back to me from surgery in the middle of the night, it was another mess. The surgeon had tried to put a catheter line in and cut his neck to check why the catheter wasn’t going into the artery correctly, she said she thought there was some blockage. So, she had to cut him again on the other side of his body to get the catheter into a different artery. Triston had dried blood, extra cut places, and Betadine all over him. He looked butchered and I suspect the surgeon was inexperienced in placing those lines in. He was awake and still very upset. What a horrible, nightmare for Triston! I couldn’t believe the condition he was in, and I told them I was taking him home now! No more of this! They could order the IV meds to be delivered to our home later that day (morning) so I could start giving the antibiotics to him at home.

As soon as I got him home, Triston had to be completely cleaned up from his head to his waist area. It was such a mess, and he was so very tired and hurting.

Triston started feeling some better about a week later, but still needed much more time to heal and continue getting the IV antibiotics.

Triston had his first pediatric dentist appointment on March 12, 2001. His doctor ordered an antibiotic called Augmentin for him to take at supper time the day before his dental visit. Then he would take another dose the morning of the dental visit, along with a dose 12 hours after the dental visit and 12 hours after that for a total of 4 doses. This would have to be done before any dental visit for cleanings. If he needed extensive dental procedures, the antibiotic would be continued for 7 days. This antibiotic was given to help protect him from getting an infection during the dental procedures. The dentist and all the hygienists were very caring and gentle with him. It was a great first dental visit.

On April 5, 2001, Triston had another endoscopy procedure done. He still had some gastritis, but the other issues were better for now.

On May 16, 2001, Triston had his first appointment with a CGD specialist named Dr. Malech at National Institutes of Health in Bethesda, Maryland. This is a research hospital, 7 hours from our home in Johnson City, Tn. The specialist ordered some specialized blood tests and prescribed 1mg of oral prednisone every other day for Triston to help keep his stomach functioning properly. We were relieved to have found a specialist for Triston to help us with his CGD treatment plan.

Triston enjoyed having his great grandma (Lolo) over for weekly play dates. They would spend hours playing in his ball pit, crawl tunnel, basketball hoop, Scooby-doo tent, and his indoor bowling ball set! Triston also received weekly visits from his grandparents and from his great aunt Ootcie. His Papaw would come over on Wednesdays and load up his red battery powered Jeep when the weather was warm. He would take it to our church parking lot where Triston could ride in a large open area. My Dad and I got lots of exercise chasing Triston around in that Jeep!

Triston enjoyed lots of kid videos and cartoons. He painted on his art easel and occupied himself on his computer. He was very good on the computer and loved playing games. In the evenings when Triston’s Dad came home, he loved spending time with him.

In July of 2001, his Nana (my mom), got married to Darroll Phillips. He was a welcomed addition to our family, and Triston enjoyed having a step-grandpa! He always called him Darroll.

Triston got more immunization shots during the summer months of 2001. He had local doctor appointments and visits from his home health nurse as needed.

On July 27, 2001, Triston’s Hickman Catheter fell out of his chest. It must have been moving down from the artery placement, but luckily there wasn’t much bleeding or discomfort. The hole in his chest had to be cleaned, medicated, and covered for weeks. Now Triston would need to be stuck with needles every time he needed blood work or any IV medications done.

Triston celebrated his 4th birthday on Sept. 4,2001 at home with lots of family and fun. His birthday theme was Scooby-Doo including a big Scooby-Doo cake! Some of the gifts Triston got were: an Army vest, helmet, play guns, a ride-on tractor, a cash register with money, and a shopping cart with play food. He also got a real bowling ball! Triston had a great 4th birthday!!

Triston loved to bowl, and we decided to start taking him to our local bowling alley 1 time a week, as soon as it opened so it wouldn’t be crowded. The manager at the bowling alley let Triston wear his own sneakers and gave us the bowling lane on the end to be away from others. Any time Triston went anywhere, he had to be very careful because his immune system was always compromised.

We took Triston back to NIH in Maryland on Sept. 19, 2001. He saw his CGD specialist, had blood work done, and a chest CT scan. His condition was stable and good. We returned home the next day.

Triston went to the dentist for his 2nd visit on Oct.15,2001. The hygienist and dentist were very careful with him. Everything went well and Triston was rewarded by the dentist for being a good patient!

Thanksgiving Day was celebrated at home with some family visits and playtime for Triston. He was happy and his health was stable. His smile and laughter made everyone happy. What a precious son we have!!

The Christmas season came with Triston helping me bake cookies and decorate the Christmas tree. He watched some Christmas kid shows and videos. It was an exciting time for him! Our family members visited us on Christmas Eve and Christmas Day. Some of Triston’s gifts were: Arcade table game, nerf gun, musical keyboard with drums, videos, stationary floor boxing toy with boxing gloves, and a Tonka drill toy. Everyone enjoyed Triston being well, happy, and active for Christmas! It was a very special blessing.

2002

On Jan.18,2002, Triston started seeing a pediatric Hem/Oncologist doctor at the St. Jude’s Affiliate Clinic at the JCMC Hospital in TN because his current pediatrician couldn’t keep him as a patient due to insurance issues. She had requested to keep Triston as a patient, but the vote from the other doctors in her medical group had to be unanimous due to the practice and the discontinued insurance plans that were disqualifying patients from continued care at that group, which included Triston’s insurance. I was worried about finding a new doctor that would understand our situation with Triston’s health issues and be qualified to take care of him. After trying another pediatric office and being turned down again, Dr. Farmer (Triston’s current pediatrician) asked the St. Jude’s doctor that she knew if he would take Triston as a patient due to his compromised immune system and his on- going health issues. His name was Dr. Kalwinsky (Dr. K), and thankfully he agreed to take Triston as his patient! The Clinic was 10 minutes from our home and a much cleaner treatment facility than any other pediatric office around. This was because they treated a lot of kids with compromised immune systems and other dangerous diseases. All doctors and nurses at the St. Jude’s Clinic follow a strict protocol of hand washing and cleanliness when doing any exams, starting IV’s, accessing central line catheters, or any direct contact with their patients. This was a much better place and situation for Triston’s care.

Triston’s first visit at St. Jude’s Clinic went well and his blood work results were good. His next visit there was 2 days later when he received his Rubella vaccine. After receiving the vaccine, he was watched carefully by the nurse for any adverse reaction for 20 minutes. Then I took Triston home and kept a close eye on him for any adverse side effects for the rest of the day and that evening. Thankfully, there were none!

On March 18, 2002, we drove Triston to NIH in Maryland for his 6 month check-up. This included blood work, a CT scan of his chest, and a physical exam. Triston had some pain on his left side rib area, but nothing alarming was seen on the CT scan and blood work was good. We returned home to TN with Triston the following day.

On April 12,2002, Triston’s left side rib area was hurting again. This is the area where he had surgery when he was 8 1/2 months old for Aspergillus (fungal infection) in his rib and lungs. The scar area from his surgery was red and now had a blister coming out from the scar. I was getting really scared and called NIH about it. Dr. Malech wasn’t sure and said we should take Triston to the clinic. We told him we were going to take a picture of Triston’s side area and email it to him. After he looked at the picture, he replied that we needed to get Triston to Maryland right away.

We were very worried about Triston, but tried to stay strong and positive in front of him. We took Triston to Maryland, and he was admitted on April 15, 2002. His doctor took a syringe with needle and removed some pus from the blister to send to the lab asap. Blood cultures were also done and sent to lab. Then Triston had a 45 minute bone scan and 45 minute MRI. He had to lay completely still for both scans. I started falling apart during his bone scan. His Dad and I were both in the room during that scan. Eddie told me to leave the room when he saw that I was breaking down so I wouldn’t scare Triston. I left the room and had a meltdown outside in the hallway. Oh my God, please help! I was so scared. Eddie came out into the hallway and gave me a hug. He told me I needed to get myself together and be strong for Triston because he needs us. He was right and I finally pulled it together and went back into the room where Triston was laying so bravely and still, getting the bone scan completed. He did so great!

The tests show Osteomyelitis of his 8th and 9th ribs. This meant his rib bones were infected with Aspergillus (fungal infection) again and this was life threatening for him. Triston went to surgery on April 16, 2002 for placement of a right IJV (internal jugular vein catheter inserted into a chest vein tunneled under the skin) so he could start IV Voriconazole (anti-fungal drug). This drug was still in a trial period, so the drug company was contacted for immediate permission to use this drug on Triston. The answer came back quickly from the drug company as a yes and the IV Voriconazole was started immediately. This drug was given for 2 weeks to get the fungal infection under control before Triston could have the much needed surgery.

On April 28,2002, another MRI was done on Triston’s brain and chest. The scan showed no fungal infection in his brain and no change in the chest area.

On May 2,2002, Triston went to surgery for rib resection of his 8th and 9th ribs. An incision was made over the old incision to remove an ellipse of skin containing inflammation and the old scar. Extensive adhesions were dissected away from his chest wall. The 7th and 9th ribs were divided to allow transposition over the defect. This provided good coverage of his chest wall with bone and soft tissue, as well as good contour. A drain tube was also placed for drainage of fluid collection. Triston remained stable during surgery. He was later awakened and transferred to ICU where he stayed overnight. it was a very scary time for us.

The next day, he returned to his regular room. Triston developed a fever and diarrhea, it was diagnosed as Clostridium Difficile (C. Diff). This is a very dangerous bacterial infection. It can be caused by taking antibiotics or from the bacteria being spread in the hospital by workers, infected surfaces, or clothing. Triston was given more IV bacterial antibiotics, the continued anti-fungal Voriconazole, and other medications needed for his condition. He continued to improve over the next 2 weeks, and then the doctor switched the IV Voriconazole to an oral form. Triston would need to take this drug daily, along with other daily prophylactic medications and 3 shots of Actimmune (Gamma-interferon) each week to help keep him alive.

After a month in the hospital, Triston’s central venous catheter line was removed and he was discharged on May 15, 2002. We took Triston home and he was so excited to finally be back home! He enjoyed playing and being able to run around the house again. But he still had to be careful with his side area as it was still healing. We watched him carefully each day, and were so thankful that he was well enough to be home with us!

On May 31,2002, I attended a school meeting to discuss Triston’s educational plan for kindergarten. Due to his compromised immune system, going to public school would put him at high risk for life threatening infections. Triston’s educational plan would be homebound status with a certified teacher coming to our home 2 times a week for 1 and 1/2 hrs each time (3 hours total per week). The certified teacher coming to our home would get assignments from Triston’s kindergarten teacher even though he wasn’t attending her classroom. The homebound teacher would start working with Triston in August for the 2002-2003 school year.

Triston went to St. Jude’s Clinic on May 24, 2002. He had finished the meds for the C Diff infection he had and would continue his daily meds of Voriconazole, Bactrim, Zantac, and 3 shots of Gamma-Interferon (Actimmune) each week. Triston’s condition was good and stable, but his body was still healing from the recent surgery.

On June 09, 2002, we drove Triston to NIH in Maryland for his check-up on June 10, 2002. Tristons dad would drive all night to get us to his appointments by 7am and he would nap in the car till we were done then drive us home afterwards. Triston’s hospital appointments started early in the morning with his fasting lab work of 7-9 tubes of blood drawn in the phlebotomy dept. Next, we would go to radiology dept. for the CT scan of his chest.

Then Triston and I would go to the cafeteria for a quick breakfast before going up to his clinical appointments. After checking in there, we would wait awhile on Triston’s assigned nurse. When she called his name, we would go back with her to get his vitals, and weight. His nurse would then take us to an exam room where she did his medical history, list of current medications, and a physical exam.

Then we would wait in the exam room for Triston’s CGD doctor and any other doctors that he needed to see in the clinic. After his CGD doctor viewed his CT scan and lab results, he would discuss everything with us. He also discussed all of Triston’s medications and his treatment plan. Any other concerns were also addressed. The doctor would approve all of Triston’s medication refills, which the nurse would send to the out- patient pharmacy on her computer to be filled. Triston’s next appt. date would be scheduled and then we could leave the clinic unless he had an appt. with another doctor for that visit. This checkup showed good blood work results and a stable CT scan of his chest!

Next stop would be the out-patient pharmacy to sign in and get a paper number. It usually took another 30-45 minutes after signing in to get the medications, so we took Triston’s number and went to the cafeteria for lunch. Then we would go get the medications at the pharmacy and walk over to the Children’s Inn to pack up our things. The Inn was a nice place for us to stay overnight whenever Triston had hospital checkups at NIH. We loaded up our car and Triston’s Dad drove us safely back home late that evening.

Triston’s next dental cleaning and exam was on July 9, 2002 with a good check-up! He was such a good patient at the dentist office and was always told so by the hygienist and dentist.

Triston’s next check-up to NIH in Maryland was on July 15, 2002 and the results were also stable and good.

Triston enjoyed his 2002 summer, but was still healing from his major lung and rib surgery performed in May, 2002. In August 2002, Triston started kindergarten with his homebound teacher. She came to our home 2 times per week. He did a good job learning, but had difficulty sitting still and focusing on the school assignments.

August 15, 2002, I took Triston to St. Jude’s Clinic with his complaint of right side abdominal pain. No pain at time of the exam and no other symptoms were found. His Zantac dosage was increased, blood work was done, and stool studies were ordered.

I took Triston home and as soon as possible, he would poop into a hat container placed on the toilet seat. Then, I would scoop the stool out of the container into 3 lab bottles and take them back to the clinic for testing asap. The following week, the clinic called to say the stool studies were all negative, which was great news!

For Triston’s 5th birthday, he wanted a party away from our house and with other kids. I found a place called Fun Adventure and contacted the manager. I explained Triston’s compromised immune system disease and the cleaning requirements involved. She told me that she would be happy to help us with a private birthday party for Triston and that the entire place would be cleaned and sanitized. So I rented out the entire place for Sept.2,2002, which was 2 days before his actual birthday. This place had large climbing mazes with tunnels, slides, and a ball pit. It had lots of riding toys, arcade games, Skee-Ball, and a putt-putt course! It was a great party and Triston had a wonderful time! He got to experience a fun birthday party away from home with other kids from our families and friends.

On Sept. 4, 2002, we had Triston’s regular 5th birthday party at our home with all our families. His birthday cake and theme was Scooby-Doo. Some of his birthday presents were: Scooby-Doo tent, outdoor basketball goal, shopping cart with food, cash register, play rifle, Lincoln logs, and walkie talkies. Watching Triston grow and be able to celebrate another birthday was amazing and priceless! He was our sunshine and the best thing in life!!

On Sept. 8, 2002, we drove Triston to Maryland and checked-in at the Children’s Inn for the night. His appointments at NIH hospital were the next day, Sept.9, 2002. He had his fasting blood work drawn, and a CT of chest, abdomen, and pelvis. Triston’s spleen was enlarged, which is often seen in CGD patients, but not dangerous at this point. His check-up results were stable and we returned home to TN late that evening.

Triston was enjoying homebound kindergarten and was keeping his teacher and myself very busy. His hyper activity was challenging, especially when you needed him to focus on his school work and get it completed.

On Oct.10,2002, I took Triston to St. Jude’s Clinic with fever and mouth/throat pain with blisters. The doctor ordered a strep test, blood cultures, and a chest x-ray. The strep test result was negative and the chest x-ray was fine. The blood culture results would take about a week