We completed another big round of chemo last week. The big rounds are all in-patient. Payton is doing well so far. We are 40 percent done with the big rounds hooray! We are so grateful that he is doing better since Savannah has started school and life feels and little more chaotic. We had Payton back into the clinic today for more chemo, vincristine which is just outpatient and to check his counts. His counts were fine. He still has not hit his nadir yet. We need to take him back into the clinic again at the end of the week to have his counts checked. Next week we have a CT scan lined up. We are praying that all this chemo and radiation has killed any cancer cells and that nothing will show up. Savannah is back in school and has been struggling a bit; although, every day seems to get a little better. I think that it is more a separation thing than anything. She has a hard time being away from her family. Poor girl has been through so much the past few months. We are grateful that Payton is doing well again this round and hope that we continue to do well. We are hoping for no unexpected hospital visits again this round.
We are so proud of Payton. He is so brave.
Tuesday, September 11, 2007
Wednesday, September 5, 2007
A Day at Fossil Rim
We picked a day when Payton’s counts were good and drove to Glen Rose, Texas, to Fossil Rim Wild Life Park and Dinosaur Valley State Park. We figured Payton would be ok since you stay in your car to drive through and see the animals. The kids had a blast and it felt so good to get out of town for the day.
Savannah's 1st day back to school.
Thursday, August 16, 2007
Finally able to continue on with chemo
My mom flew in for 10 days since Chad had to be out of town. She was such a big help since we were admitted in the hospital for 4 days. They had to access Payton’s port 3 different times. I felt so bad for Payton the first time they were testing out some new needles and didn’t get it in right. I noticed that he had IV fluid dripping all over his shirt. The second time they didn’t use the right size of needle. Third time was the charm. Poor Payton he was screaming louder than I’ve ever heard him scream. He was really upset. One time is bad enough. Sometimes I wonder what he is thinking. No two-year old should have to be this traumatized. That backed our chemo up until late into the evening due to all the problems. Payton did much better this round with the reduced chemo dosages. Dr. Bowman decided to reduce the chemo drugs that lower his counts by 25 %. We only needed 2 platelet transfusions and 1 red blood cell transfusion. His counts dropped to their lowest after 10 to 14 days and then went back up just like they should. No fevers which meant no unexpected hospital visits. This has given us some hope that we might not be in the hospital after every big round of chemo. It has been so nice to be at home a little more. I am so grateful that my mom was able to come. I’m not sure that I would have made it through the week without her. We were so glad to get Chad back.
Monday, August 6, 2007
Almost Home From the Hospital
As we near the end of our latest unexpected stay in the hospital (18 days to be exact), we are both excited at the prospect of going home for a few days to regroup and nervous for the future with another 24 weeks of chemo ahead of us. The past 18 days were more eventful than we would like and an emotional rollercoaster. We’ve learned firsthand of the intensity of Payton’s chemotherapy regime and how precarious his situation can be at times. At one point last week Payton woke up and gave us, his nurse, and Dr. Heime quite a scare; he was curled up, shaking, breathing erratically, and wincing from obvious pain. Dr. Heime was worried that his colon might have perforated and ordered an immediate platelet transfusion in case he was to undergo emergency surgery. A surgeon, Dr. Miller was called up to examine Payton and after examining him believed that Payton was experiencing intense pain because his immune system was now beginning to fight the infection, but to be sure we were whisked downstairs for a chest x-ray and another ultra-sound. Fortunately Payton did not have a perforated colon and would not need to undergo emergency surgery. In fact, later that day Payton started feeling a little better and when Dr. Heime came back to check on Payton, he remarked that he looked like a different child and was very relieved that he was doing much better, as were we. Slowly, the ascites Payton was experiencing has begun to subside and his stomach is looking normal again. As he has steadily improved, Payton is back to his mischievous self, throwing bowls of hot noodles, peaches, and many other items of food onto the floor much to the chagrin of his parents and the various housekeepers.
Unfortunately, because Payton contracted a fungal infection, Dr. Shelton from infectious disease recommended that Payton have his port removed in case any Candida sp. was hiding there. This seems to be standard procedure with the contraction of fungal infections since they are notoriously difficult to eradicate. Payton had his port removed last Wednesday and had a peripheral IV until he had another port placed on the other side of his chest the following Monday.
Now that Payton is feeling much better we will have a few days to go home and allow Payton’s neutrifils and platelets to recover before we have to start another round of chemo on Friday. What has become painfully obvious to us and the oncologists is that the regiment that Payton is on is hitting him too hard. That being said, Dr. Bowman has been in contact with the oncologists at Children’s Oncology Group to discuss how to modify Payton’s treatment so that he won’t be at such a high risk for serious infection in the future with upcoming treatments. Dr. Bowman has suggested that they drop the doses of some of his chemo drugs by about 40% and see how he does. Fortunately, the fact that Payton has already had two chemo treatments at the full intensity will serve him well, since they want to hit the chemo hard and fast particularly at the beginning of treatment. We are therefore hopeful that the reduction in dose of several of the chemo drugs included in Payton’s regiment will lessen his chance for serious infection and will still be effective in ridding him of any remaining cancer cells.
During our stay here we have been amazed by the many other children and parents that we have met. Like little Hector who is only 11 months old and has leukemia. He races down the halls in his little walker late at night as his tired mother Michelle follows him around anxiously waiting for him to “wear himself out” so she can get to bed. Little Illa, who is almost 2, has already undergone a year of chemo for neuroblastoma and has had to go to the ICU for 5 days because she is having heart problems. Her mother Sadie walked her around the halls in a wagon for several days before having to take her to the ICU and looks completely drained emotionally and physically. So many sad situations and struggles that many of the children and parents here have to endure, but also a lot of courage and determination. Quite an amazing situation it is to be on the “chemo floor” of a children’s hospital, when you feel both blessed and guilty that your child has a highly treatable type of cancer with a good prognosis. If that doesn’t put your life in proper perspective of what really is important, then I don’t know what else would.
What an experience this is all turning out to be. We are thankful for all our blessings. We are so proud of Payton for the strength he has shown. We are also proud of Savannah and how she has been strong as she has been away. We look forward to seeing her again soon and all of us being together again. We are so grateful for the continued support that has come from so many people. We feel like there is such a long way to go, but at the same time we have already come so far.
Unfortunately, because Payton contracted a fungal infection, Dr. Shelton from infectious disease recommended that Payton have his port removed in case any Candida sp. was hiding there. This seems to be standard procedure with the contraction of fungal infections since they are notoriously difficult to eradicate. Payton had his port removed last Wednesday and had a peripheral IV until he had another port placed on the other side of his chest the following Monday.
Now that Payton is feeling much better we will have a few days to go home and allow Payton’s neutrifils and platelets to recover before we have to start another round of chemo on Friday. What has become painfully obvious to us and the oncologists is that the regiment that Payton is on is hitting him too hard. That being said, Dr. Bowman has been in contact with the oncologists at Children’s Oncology Group to discuss how to modify Payton’s treatment so that he won’t be at such a high risk for serious infection in the future with upcoming treatments. Dr. Bowman has suggested that they drop the doses of some of his chemo drugs by about 40% and see how he does. Fortunately, the fact that Payton has already had two chemo treatments at the full intensity will serve him well, since they want to hit the chemo hard and fast particularly at the beginning of treatment. We are therefore hopeful that the reduction in dose of several of the chemo drugs included in Payton’s regiment will lessen his chance for serious infection and will still be effective in ridding him of any remaining cancer cells.
During our stay here we have been amazed by the many other children and parents that we have met. Like little Hector who is only 11 months old and has leukemia. He races down the halls in his little walker late at night as his tired mother Michelle follows him around anxiously waiting for him to “wear himself out” so she can get to bed. Little Illa, who is almost 2, has already undergone a year of chemo for neuroblastoma and has had to go to the ICU for 5 days because she is having heart problems. Her mother Sadie walked her around the halls in a wagon for several days before having to take her to the ICU and looks completely drained emotionally and physically. So many sad situations and struggles that many of the children and parents here have to endure, but also a lot of courage and determination. Quite an amazing situation it is to be on the “chemo floor” of a children’s hospital, when you feel both blessed and guilty that your child has a highly treatable type of cancer with a good prognosis. If that doesn’t put your life in proper perspective of what really is important, then I don’t know what else would.
What an experience this is all turning out to be. We are thankful for all our blessings. We are so proud of Payton for the strength he has shown. We are also proud of Savannah and how she has been strong as she has been away. We look forward to seeing her again soon and all of us being together again. We are so grateful for the continued support that has come from so many people. We feel like there is such a long way to go, but at the same time we have already come so far.
Wednesday, July 25, 2007
Another Crazy Week!
Payton started fevering on Friday night (July 20th) after a couple calls into the oncologist throughout the night; we were told we needed to take him into the Emergency Room. We arrived and blood tests were taken right away. We found out that Payton’s Platelet count was at a dangerously low rate of 1. Blood Transfusions are normally done at 20. They immediately admitted us into the hospital and gave him a platelet transfusion and red blood transfusion. Platelets are what cause your blood to clot if you get a cut. Luckily Payton didn’t or he could have hemorrhaged. It was pretty scary. After talking with Payton’s Oncologist we need to watch him even more closely since we were in on Thursday, had a platelet transfusion and then he still dropped to a level 1 in just less than 48 hours. We were told that the bone marrows of some children do not take chemo as well and, it looks as if that is going to be the case with Payton. We are really lucky in ways that he started to fever so we could get him the help that he needed. Payton has continued to have several transfusions during our visit.
On Sunday we had a bit of a scare we noticed that Payton’s stomach looked really enlarged. That evening we noticed even more of a difference. We informed our nurse and requested that she called our Oncologist. Our Oncologist ordered an Ultra Sound to see what we could figure out. We found out through the ultra sound that Payton has what’s called an Ascites which is an abnormal build-up of fluid in the abdomen which can be very uncomfortable or painful. We had a little scare because one of the causes of Ascites can be cancer cells in the liver. That was a scare that I don’t want to experience again. Thank goodness they didn’t see any masses on his liver. They also decided to do a blood culture to test the function of Payton’s liver and kidney. All came back fine. We did a Chest X-ray on Monday and found out that Payton has what’s called typhilitis which may be caused from some of the chemotherapy drugs. Typhilits is an inflammation of the cecum and colon. It usually takes about 2 weeks to clear. In the meantime Payton is going to be pretty uncomfortable with such a large abdomen. Payton is being treated with 5 different kinds of antibiotics to try and treat this. We are hoping that he will be fine and that no surgery will be needed. If surgery was needed some of his colon would need to be removed. Payton also had to have a EKG to check his heart, because some of antibiotics that he is on have the potential to cause heart damage.
Payton’s blood work came back on Tuesday and we found out that he has fungal infection in his blood stream. It feels that we are dealing with one thing after another. We are feeling pretty frustrated about right now. Not sure if this infection came from our time in the hospital or at home. Payton was seen by and infectious disease specialist today and was put on antifungal medications to treat this. There is a possibility that they could have to go in and surgically remove his port if this doesn’t get better in a couple days. We were told that this could take up to 3 week to clear. This could be life threatening if left untreated. We feel really frustrated, overwhelmed and feel so sorry for all that Payton is going through. Payton still continues to have a high fever through this and has a very little appetite. He has been put on Intralipid IV fluids to give him the nutrition that he needs since he hasn’t been eating. Our nurses have stayed busy running all of these IV’s. There hasn’t been much of a break.
We are really nervous and apprehensive since we have had such a hard week due to the effects of chemo. Payton was scheduled to have the same round of Chemo on Monday. Looks like that will be postponed until all this clears up. We have heard that Payton is the first to be on this regiment of 5 doses of Chemo in this hospital. We hope that things get better throughout this. It’s not so much the week that he has Chemo; it’s the weeks after and the later effects of chemo that you have to worry about. Payton’s blood count levels will drop to their very lowest 10-12 days after the first day of chemo. It looks as if the hospital will be our second home for a while. Payton’s blood count levels are still low and we are waiting for them to rise.
We have no idea how long our stay will be in the hospital at this point. It depends on how well Payton does. This is frustrating since we know that his is prolonging his chemo and we feel he has had to endure much more than he should. It’s been hard to watch Payton be so sick. We miss our mischievous two year old boy. We can’t wait for the day that we can see Payton be himself again.
Savannah left to go visit Grandparents in Utah on Tuesday for 2 ½ weeks with her aunt Jennifer and cousins. I hope that she can go and have a good time. I worry a lot about how this is all affecting her. She is such a sweet girl and is so sweet to her brother. She doesn’t quite understand why Payton can have ice cream and brownies for breakfast and she can’t. Payton’s taste buds have changed a little since Chemo and we have to feed him whatever he asks for.
On Sunday we had a bit of a scare we noticed that Payton’s stomach looked really enlarged. That evening we noticed even more of a difference. We informed our nurse and requested that she called our Oncologist. Our Oncologist ordered an Ultra Sound to see what we could figure out. We found out through the ultra sound that Payton has what’s called an Ascites which is an abnormal build-up of fluid in the abdomen which can be very uncomfortable or painful. We had a little scare because one of the causes of Ascites can be cancer cells in the liver. That was a scare that I don’t want to experience again. Thank goodness they didn’t see any masses on his liver. They also decided to do a blood culture to test the function of Payton’s liver and kidney. All came back fine. We did a Chest X-ray on Monday and found out that Payton has what’s called typhilitis which may be caused from some of the chemotherapy drugs. Typhilits is an inflammation of the cecum and colon. It usually takes about 2 weeks to clear. In the meantime Payton is going to be pretty uncomfortable with such a large abdomen. Payton is being treated with 5 different kinds of antibiotics to try and treat this. We are hoping that he will be fine and that no surgery will be needed. If surgery was needed some of his colon would need to be removed. Payton also had to have a EKG to check his heart, because some of antibiotics that he is on have the potential to cause heart damage.
Payton’s blood work came back on Tuesday and we found out that he has fungal infection in his blood stream. It feels that we are dealing with one thing after another. We are feeling pretty frustrated about right now. Not sure if this infection came from our time in the hospital or at home. Payton was seen by and infectious disease specialist today and was put on antifungal medications to treat this. There is a possibility that they could have to go in and surgically remove his port if this doesn’t get better in a couple days. We were told that this could take up to 3 week to clear. This could be life threatening if left untreated. We feel really frustrated, overwhelmed and feel so sorry for all that Payton is going through. Payton still continues to have a high fever through this and has a very little appetite. He has been put on Intralipid IV fluids to give him the nutrition that he needs since he hasn’t been eating. Our nurses have stayed busy running all of these IV’s. There hasn’t been much of a break.
We are really nervous and apprehensive since we have had such a hard week due to the effects of chemo. Payton was scheduled to have the same round of Chemo on Monday. Looks like that will be postponed until all this clears up. We have heard that Payton is the first to be on this regiment of 5 doses of Chemo in this hospital. We hope that things get better throughout this. It’s not so much the week that he has Chemo; it’s the weeks after and the later effects of chemo that you have to worry about. Payton’s blood count levels will drop to their very lowest 10-12 days after the first day of chemo. It looks as if the hospital will be our second home for a while. Payton’s blood count levels are still low and we are waiting for them to rise.
We have no idea how long our stay will be in the hospital at this point. It depends on how well Payton does. This is frustrating since we know that his is prolonging his chemo and we feel he has had to endure much more than he should. It’s been hard to watch Payton be so sick. We miss our mischievous two year old boy. We can’t wait for the day that we can see Payton be himself again.
Savannah left to go visit Grandparents in Utah on Tuesday for 2 ½ weeks with her aunt Jennifer and cousins. I hope that she can go and have a good time. I worry a lot about how this is all affecting her. She is such a sweet girl and is so sweet to her brother. She doesn’t quite understand why Payton can have ice cream and brownies for breakfast and she can’t. Payton’s taste buds have changed a little since Chemo and we have to feed him whatever he asks for.
Thursday, July 19, 2007
Week 5
Since we got Payton home from his 5 days of chemo in the hospital, he has been pretty cross, which is to be expected for all that he has been through. Payton has wanted to be held a lot and doesn’t have much energy. We took him in on Thursday to check his blood counts and he ended up needing another platelet transfusion. I guess that explains why he hasn’t had much energy. Payton’s blood counts drop to the lowest point 7 to 10 days after his first dose of chemo, which is right where we are at. Payton is most susceptible to anything right now and has to be watched close.
While we were at the hospital getting blood work done today, we were able to talk with one of the oncologist. We were talking with the oncologist about The National Protocol and how they had added a fifth chemo drug carboplatin, which has been used as a relapse drug for Wilm’s tumors, brain tumors and other types of cancers. Through this National Protocol study we are hoping that by adding this drug and using it upfront that it will increase our odds of no relapse even more. We just hope that this never comes back since that would mean that these cancer cells would be resistant to carboplatin. Payton is going through a pretty heavy dosage of chemo in hopes that we will get rid of any existing cancer cells the first time around. I think they are hitting him like they would have hit a relapse patient years ago. Our oncologist said that we have every reason to be optimistic. We are doing everything that we can and leaving the rest in the Lord’s hands. This is going to be a really bumpy remaining 25 weeks. The doctors are watching Payton really close and hope that he will be well enough to stay on the protocol and finish his full chemo. We are so proud of Payton. He is going to be the toughest little boy if he can make it through all of this. We love him so much and are so grateful that we have two wonderful kids.
While we were at the hospital getting blood work done today, we were able to talk with one of the oncologist. We were talking with the oncologist about The National Protocol and how they had added a fifth chemo drug carboplatin, which has been used as a relapse drug for Wilm’s tumors, brain tumors and other types of cancers. Through this National Protocol study we are hoping that by adding this drug and using it upfront that it will increase our odds of no relapse even more. We just hope that this never comes back since that would mean that these cancer cells would be resistant to carboplatin. Payton is going through a pretty heavy dosage of chemo in hopes that we will get rid of any existing cancer cells the first time around. I think they are hitting him like they would have hit a relapse patient years ago. Our oncologist said that we have every reason to be optimistic. We are doing everything that we can and leaving the rest in the Lord’s hands. This is going to be a really bumpy remaining 25 weeks. The doctors are watching Payton really close and hope that he will be well enough to stay on the protocol and finish his full chemo. We are so proud of Payton. He is going to be the toughest little boy if he can make it through all of this. We love him so much and are so grateful that we have two wonderful kids.
P.S. Payton saw a picture of his tumor today and pointed to it and said "pizza."
Tuesday, July 17, 2007
Week 4 of Chemo
Payton was supposed to be admitted into the hospital on Monday for 5 days of chemo. We arrived at the hospital and were admitted. After getting settled into our room and receiving IV fluid for a couple hours, we were informed that Payton’s neutrifil levels were not high enough to start chemo. We were then discharged and told to come back on Thursday. We were a little frustrated since Chad’s mom had flown in from Idaho to help us with Savannah for the week. That’s what is so frustrating about all of this, there is just no guarantee.
We were then re-admitted again on Thursday to start our 5 days. Payton did quit well with his chemo this time. I think that this gives us a little bit of hope. We kept him on anti-nausea medicine around-the-clock and he made it through without throwing up during his stay. On Payton’s last day in the hospital he had to have another blood and platelet transfusion, since his counts were so low. Chad’s mom left on Saturday and we really appreciated her help with everything.
We are so blessed to have so many wonderful friends and family in our lives that give us so much support. Heavenly Father has blessed us in so many ways that we never thought were possible. It’s amazing how he works through other people. We want to thank everyone in our lives that have helped us get this far. We love you all. We have faith that Payton will get through this and live a happy healthy full life.
During his stay in the hospital, Payton got to visit aunt Jennifer while she was working.
We were then re-admitted again on Thursday to start our 5 days. Payton did quit well with his chemo this time. I think that this gives us a little bit of hope. We kept him on anti-nausea medicine around-the-clock and he made it through without throwing up during his stay. On Payton’s last day in the hospital he had to have another blood and platelet transfusion, since his counts were so low. Chad’s mom left on Saturday and we really appreciated her help with everything.
We are so blessed to have so many wonderful friends and family in our lives that give us so much support. Heavenly Father has blessed us in so many ways that we never thought were possible. It’s amazing how he works through other people. We want to thank everyone in our lives that have helped us get this far. We love you all. We have faith that Payton will get through this and live a happy healthy full life.
During his stay in the hospital, Payton got to visit aunt Jennifer while she was working.
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