Hunter has tempted fate once before. The first night he came home from the hospital, the carbon monoxide detector went off in his nursery. Luckily, I had decided to purchase one. It was the best $20.00 I have or will ever spend. It turned out to be our gas furnace that was letting off the silent killer. Without the carbon monoxide detector, who knows what the consequences would have been.
Hunter was a good baby. He was never sick, and always had a smile on his face. He began to walk at 8 1/2 months and has been on the go ever since. Hunter is left-handed. That hasn't stopped him from being able to do anything! There are many things that Hunter loves or enjoys doing. Hunter loves trucks and cars. He spends most of his time playing with them. He loves to smash, crash, stack, jump and line them up. Monster trucks, fire engines, semi trucks, dump trucks, hot wheels, race cars and 4x4's fill his toy box. When the weather is nice outside, Hunter loves to hit golf balls, swing his baseball bat, ride his bike and drive his Chevy Silverado with his baby brother, Logan, sitting next to him. Hunter also loves to go on 4-wheeler rides with his uncles. He hasn't been able to do these things much this summer because he is in and out of the hospital too much. His blood counts have been low also. Hunter loves to watch Blue's Clue and Scooby Doo videos, be read to and playing games on the computer.
It was September 18, 2000. We were just getting adjusted to a series of changes in our lives. Hunter's baby brother Logan had just been born in June. He was finally getting over being jealous of the new baby. I had just started back to work after an extended maternity leave. My husband, Steve, had just started a new job a few weeks earlier. We were in the early stages of planning a family trip to Arizona in the spring. But instead, our lives changed forever that day.
When I got home from work, my husband showed me one of Hunter's diapers. It was full of blood! I called his pediatrician and made an appointment to come in later that day. The earliest they could sqeeze him in. Unfortunately, my husband had to go to work. So, he dropped Logan off at his parents house, and I took Hunter to see his doctor. After his doctor saw his diaper and gave him an examination, he gave me a preliminary report. He felt a mass the size of a peach on the left side of his abdomen. He believed it was a tumor. Further testing needed to be done. At first he sent us to have an ultrasound done, but then changed his mind. Dr. Roe contacted a nearby hospital, The University of Wisconsin Children's Hospital in Madison Wisconsin. They specialize in childhood illnesses. He talked to a Dr. Paul Sondel who is a pediatric hematology/oncology doctor. We were to go there as soon as possible. They were going to admit Hunter and do testing to find out what they were dealing with. The hospital is located about 45 minutes away from our house.
I drove with Hunter to my in-laws house. My head was filled with so many questions and I was fighting to hold back the tears. It was all happening so fast. I needed to get a hold of my husband at work, make arrangements for Logan to be taken care of and get everything packed. My father-in-law left a message for my husband to come home immediatley. Steve's parents were going to watch after Logan who was only 3 months old. Now, we needed to get to the hospital.
When we got to the hospital, Hunter was admitted and immediately an I.V. was placed in him. It took several attempts until they found a vein that would work. Hunter was amazing! He did not cry. They drew blood for testing. Next, he was given a CT scan at 11:00 at night. An ultrasound would be done the next morning. The preliminary reports showed there was something in both of his kidneys. More testing was ordered.
My husband and I stayed overnight with Hunter in the hospital room. Steve got a cot and I cuddled up next to Hunter in his bed. I didn't want to let him go. The next day Hunter was taken to have an abdominal ultrasound, chest x-rays and more blood tests. A double biopsy was to be performed the next day by Dr.Lund and Dr.Kryger. The biopsy would consist of going in surgically and removing a piece of each tumor mass. After 3 long hours, the biopsy was finished. They had found exactly what they had expected. Tumors. The right kidney was a solid tumor. The left kidney had three solid tumors in it. During the biopsy, they inserted a central line or Hickman Catheter into his chest. One end of the catheter attaches to a vein in the collarbone , and the other end is inserted into the right atrium. The Hickman catheter than extends outside of the chest with a tube...about 8 inches. This internal catheter allows for easier chemotherapy treatments, blood draws and the child does not have to get pocked with a needle so much. It needs to be cleaned and cared for daily.
His insicion from the surgery stretched across his entire stomach from hip to hip, just above his belly button. He had tubes placed all over his body. A foley catheter extending into his bladder, a NG tube extending down the back of his throat and into his stomach, an oxygen tube in his nose, an epidural situated in his spinal column and the usual I.V. He was very pale and looked so scared and fragile. I can still hear his little voice saying his words in the recovery room,"Mommy, I don't feel good." I almost started to cry. It was one of the worst feelings you could have when your child wants, and needs to be held and you can't do anything about it.
On September 19th, 2000 Hunter was diagnosed with Bi-Lateral Wilm's Tumor or Nephroblastoma. This is a rare form of this kind of cancer because it involves both of the kidneys. The odds of having it in both kidneys are like winning the Powerball lottery twice. We decided to be part of the National Wilm's Tumor Study Group #5. Hunter would receive the same type of treatment whether he was part of the group or not. We decided that even if Hunter does not benefit from this study, it could help other children in the future. His treatment would consist of chemotherapy and surgery. Hunter's biopsy showed that his tumors were of a favorable histology and would be treated as stage two on both sides. (For further explaination of histology and stages see Wilm's Tumor Facts) The goal for Hunter was to administer chemotherapy to shrink the tumors enough to be able to surgically remove them, while still having enough kidney function to live.
After 8 days in the hospital Hunter got to go home. He would be getting weekly chemotherapy treatments consisting of vincristine and dactinomycin. After being home for only 5 days, Hunter developed a very high fever. He was admitted to the hospital for antibiotics to help battle a possible bacterial infection. They found no infection.
On October 23, Hunter had another set of chest x-rays, abdominal ultrasound and CT scan. The purpose was to see if the tumors had shrunk in size. After examining the results, the medical teams felt that the tumors had shrunk, but they didn't know if it had shrunk enough to perform a tumor removal or just another biopsy. He had his second surgery on October 25, 2000. After approximately 4 hours the surgery was finished. To everyone's surprise, they were able to go ahead with the tumor removal. His right kidney was totally removed. It was a solid tumor. There was no possible way to save it. They also removed 1/3rd of his left kidney. The surgeons were happy with the outcome. They had wanted to leave him with the minimal of 2/3rds of a kidney. And that is exactly what they did. Hunter was kept in the ICU for two days. They needed to keep a close eye on him, his high blood pressure, high heart rate and the functioning of his remaining kidney. After he was stabalized he went into the special protective area for the Hematology/Oncology kids. He remained in the hospital for 6 days.
Hunter has been going to the hospital weekly for chemotherapy treatments. He has seen his kidney specialist only once so far. There is some concern because his kidney function has not improved. The last test showed his remaining kidney is functioning at 40%. Also his blood pressure was high enough to cause concern. He had to start taking an oral tablet, Zestril, to get it under control. They are going to watch him closely for renal failure.
On December 12th & 13th, 2000 Hunter had another set of chest x-rays, an abdominal ultrasound and CT scan. This set of tests were being done to see if any tumor remained in the kidney after the last surgery. The results were inconclusive. The ultrasound and CT scan show two bumps on the edge of the kidney. The radiologist and the hematologist/oncologist "think" it is just scar tissue, but are not sure. On Monday December 18th, the surgeon and urologist are going to examine the scans. If the spots are a cause for concern to them, another biopsy would be performed immediately. They decided to leave it alone.
We enjoyed the holidays quietly at home alone. We didn't want to chance Hunter getting sick and risking an infection.
On February 1, 2001 Hunter received his last dose of chemotherapy. He had finished all 18 weeks as scheduled. On February 20th Hunter had a CT scan. The chest x-rays and abdominal ultrasound was performed on February 22nd. The CT scan showed no signs of a recurrent tumor. Hunter was in remission!!!!!
Now, we were eagerly waiting for Hunter to have his Hickman Catheter removed. It was no longer needed since he was done with treatment. But before this could happen, Hunter ended up fighting for his life. On February 28th, 2001 Hunter developed a fever of 105.5 degrees after having his central line flushed with Heprin. Along with the high fever, Hunter was delirious, began shaking with the chills, he was week, his heart was racing,and he threw up. We called the hospital and were called back immediately. We were to get him to the local emergency room as soon as possible! We were told to not take time to do anything, just get there. The University of Wisconsin's Childrens Hospital had contacted them to let them know the situation. When we got to the emergency room, no one really seemed to know what to do. They did the usual temperature, blood pressure, asked basic questions....but I don't feel they had a clue about what was going on. His heart rate was 185 , his blood pressure was low at about 60/45, and his temperature was 105.5 degrees. There plan was to get him stable enough to be able to gethim to the Children's Hospital where he could be treated by the doctors that had been dealing with him. After he was stable enough to move, he was taken to the University Hospital and admitted to the I.C.U. Blood tests were done. Hunter had one of the worst types of bacterial infections you could have. They weren't sure of the exact bug, so they didn't know how to treat it. Our son wasextremely septic. This is blood poisoning. It was being caused by the bad bacteria. He was so sick. He was literally fighting for his life. They had to remove the Hickman Catheter because that was the main source of infection. They inserted a line into the large vein in his leg, and one into his heart to monitor himand to replace the Hickamn catheter for now.. We were given very little hope he would make it. Slowly he started to get better. After about 6 days in the I.C.U. he was moved to another hemoc room.
Hunter had an ultrasound done on Wednesday May 2, 2001. This ultrasound was done as his first three month check-up since being in remission. Unfortunately, they discovered a mass that is 7.5 cm growing in the spot where they removed his right kidney. Hunter was immediately admitted to the University of Wisconsin's Childrens Hospital to be examined. After performing a CT scan, our worst nightmare had offically come true. Hunter had relapsed!!!
The mass or tumor that was growing is very "mushy" on the inside. Therefore, it is very delicate. After the different health care teams got together to discuss the appropriate treatment to battle this tumor, it was decided that it would be necessary to first administer chemotherapy to try to shrink the tumor into a solid mass small enough to be removed safely. If the tumor is removed before it is hard enough, it could possibly leak or explode into other organs surrounding the area. Hunter is going thru a more intense treatment protocal this time around. He is being given more, different, and stronger drugs than before. He is also going to receive radiation therapy. They are going to go at this full force!
On Friday May 4th, Hunter had surgery to implant a port-a-cath into his chest. We chose to go with the port this time because we did not feel comfortable with the Hickman Catheter after it got infected last time around. The port-a cath is a small metal chamber (portal) with a rubber top. It resembles a small button. It is placed in his chest the same way as the Hickman. An 18 inch catheter tube threads from the port under the skin to a large vein near the collarbone, then inside the vein to the right atrium of the heart. There are no tubes hanging from the body. This only occurs when the port needs to be accessed (by a special needle) for a blood draw, chemotherapy or to receive an I.V. At the time of the port placement, they decided to go ahead and try to get a small sample of tissue or liquid from inside the tumor. This procedure was done with a very fine needle while looking at an ulrasound. The tissue or liquid would be examined to see if the tumor is recurrent Wilm's Tumor or something different. After the procedure, there was no trace of a needle puncture.
Hunter received his first dose of chemotherapy on May 4th. This consisted of two drugs-Vincristine and Doxorubicin. His other drugs will include Cyclophosphamide and Etoposide. He will also receive a drug called Mesna which is given to prevent bladder damage by Cyclosphamide. He will receive a combination of these drugs for about 24 weeks. The radiation will be given for 5 days a week for 3 weeks. He will also regularly receive a shot called G-CSF under the skin to raise his white blood counts.
Hunter has been tolerating his new chemotherapy drugs better than we anticipated. However, his blood counts are a lot lower than they were the first time around. The low blood counts are due to three of the drugs (doxorubicin, cyclophamide and etoposide) which all cause bone marrow depression. Bone marrow depression results in a decreased production of red blood cells causing anemia, decreased platelet production which cause a tendenct to bruise and bleed and a decreased white cell production causing a greater risk of infection.
Hunter is already one week behind schedule. He could not receive his scheduled chemotherapy on May 17 because his blood counts were too low. The dose and strength of the treatment would have been too dangerous for him to receive. So, his chemotherapy was put on hold until his counts came back up. Luckily, this only took a week to happen.
Hunter's CT scan on May 18th, showed a small change in the tumor, but not enough to consider surgery. He will get checked again in a few weeks.
Hunter completed his first hospital stay for chemotherapy on May 28. He received chemotherapy everyday for 5 days. Hospitalization is required because one of the drugs can cause a severe drop in blood pressure. These chemotherapy drugs can cause blood counts to drop dramatically. Therefore, he needs to receive a shot everyday for 10 days after he gets them. This shot is administered to him at home. The shot is given to stimulate his bone marrow, increase his white blood cells and to help prevent infection.
Unfortunately, Hunter was hospitalized again from June 2-June 6 for a high fever. The big dose of chemotherapy he received a week before was finally beginning to work and it had wiped out his blood counts. He was given an antibiotic to fight any infection he might have. Because he had no visible neutrophils (which are white blood cells that fight bacterial infections) he was considered neutropenic and had to stay in his hospital room.
Hunter had another CT scan and chemotherapy on June 7th. The scan showed a small change in the tumor, but still not enough to to perform surgery. They will check again in a few weeks.
On June 9th, Hunter developed another high fever. The doctor on call at the hospital likes to keep kids out of the hospital if at all possible. So, he sent us to the ER to have some blood tests done. A long acting antibiotic was administered to get ahead of an infection, if one was present. His tests came back okay, so we got to go home.
June 14th began another extended chemotherapy stay. This stay lasted 3 days. Hunter started receiveing the G-CSF shots on June 18th. On June 25th, Hunter had another CT sccan. This scan showed good shrinkage. Surgery was scheduled for June 28th, 2001. Hunter's counts had to be high enough for them to go ahead with the surgery. He had them tested on June 27th, and they were okay-so surgery was a go.
The surgery for the tumor removal was performed by Dr.Lund and Dr. Kryger. The whole procedure lasted 4 hours. They used the same incision as previously used, but had to extend it a bit more on the right side. The tumor was attached to the liver and diaphragm. To be able to remove the entire tumor, they also had to remove a small piece of the liver and diaphragm. When you remove a piece of the diaphragm, it causes a small hole to open into the lungs. This can cause the lungs to not properly fill with air-causing breathing problems or possibly a collapsed lung. They kept him hooked up to the oxygen and monitors for a few days as a precaution measure. He had an epidural in his back for pain and could have morphine as needed.
The tumor that was removed was a little smaller than the size of a tennis ball. It was described as having felt like a glad bag filled with water. Very wiggly and jiggly. We are lucky it never leaked or ruptured. The surgeons are confident they removed the entire tumor without causing any leaks to occur. The pathology report showed the entire tumor was present with no signs of a leak or damage. The tumor was about 4 cm's. This time around the tumor has an unfavorable histology. This means it may not respond well to treatment. Therefore, it is necessary for Hunter to receive radiation on the spot to get any microscopic cells that may have been left behind.
On July 2nd, Hunter developed another high fever. They started him on an antibiotic. He was also givn a blood transfusion because his counts were very low. His hemoglobin was 6.0-normal is 11.5-14.5; and his hematacratic was 12.0-normal is 33-43. After he received the blood his counts were better and his fever went away.
Hunter began radiation on July 10th. He has to be sedated each time he receives it. The sedation is necessary so he does not move at all during the procedure. If he were to move, the remaining partial kidney could be a target. This would damage it. The whole procedure only takes about 10 minutes. Sedation another 5-10. The radiation will last for 2 1/2 weeks everyday monday-friday. This means we have to drive back and forth everyday for almost 3 weeks. We have driven that way so many times now that I think the truck drives itself. Before the first treatment of radiation was given there were a few steps that needed to be performed first. The first thing done was to have a special mold created of Hunter's body. He will lay in this during each treatment. It is like a big bean bag chair that has been form fitted to his body. Next the area to be radiated is maped out. Quadrants are set to be used each time. Small marks were also made on Hunter's body so they can easily line up the spot visually. This will help them each time he needs treatment. So far he has been feeling pretty well. He only threw up once after the first dose.