Friday, October 24
Tyler arrived early yesterday at the hospital to begin week 13 of his chemo treatment. It always begins with his prehydration fluids followed by the chemo by IV. He remains at the hospital for around 15 hours and then returns home. The doctor's delayed his treatment a few days because Sarah and Charles were out of town. Tyler will have a week or so to recuperate from the high doses of methetrexate and have another round some time next week. He should also get his cast removed next week also. He will be put to sleep for the procedure because he will have his stitches removed also. Some of the stitches are very deep and it will be very painful. He will then begin a strenuous physical therapy program to learn to use his leg again.
Sarah and Charles enjoyed their few days away to Cancun. Sarah said it was the best vacation she and Charles have ever had together. The weather was great. She shared with me about an excursion they took. They got to zip line, ride mountain bikes and swim in the underground river. It was a lot of fun.
Ally did a great job taking care of the boys while Sarah and Charles were away. Unfortunately Glen (Sarah's father) wasn't feeling good last week. He felt well enough Wednesday to celebrate his 53rd birthday with the family out to eat. Happy belated Birthday, Glen! I pray you will be feeling better soon!
Tyler we think and pray for you often. Keep working hard! We love you!
Stay close! Kim
Feeling Good
Wednesday, October 15
After a bad day on Sunday and Monday, Tyler is feeling good today!!!! He went to the hospital yesterday and his counts are back to normal which gives him strength and an appetite. He now has a nice blue cast on his leg and I am claiming he has become a Kentucky fan. I think he just likes blue but I can hope he will come over to the blue side. The cast will keep his leg fully extended for 2 weeks. The brace he was wearing had a little too much give and they need for him to keep it completely straight for 2 weeks. When the cast is removed, his wound will be taken care of and his stitches will be removed. The doctors are truly amazed at how well his leg is healing. He started physical therapy yesterday to strengthen his upper leg muscles. This made him a little sore and he had some pain but other than that he has been pain free. Hurray!!! Sarah and Charles are so pleased with his progress and NO complications.
Tyler is in school. Not real school but he is having private tutoring provided by St. Jude. He started chapter 1 in Algebra and is flying through it. He will be caught up in no time.
Ally is still with the family taking very good care of them. Sarah and Charles have decided to celebrate their anniversary early and fly to Cancun for a few days since they have such great help at home. I am so happy they are getting some time together. They sure do deserve it. Pray for good weather, safety and all is well at home while they are gone.
What are you dressing as for Halloween? Tyler has decided to go as a wounded soldier. His blue cast will fit into his outfit perfectly. Sarah said when he told her that the other day, she was so proud of his attitude and how he has responded to this horrible situation. It is obvious he has trust and faith in God. It shows in his attitude and actions. Tyler, we are all so proud of you! We can't wait to see you.
Stay close! Kim
After a bad day on Sunday and Monday, Tyler is feeling good today!!!! He went to the hospital yesterday and his counts are back to normal which gives him strength and an appetite. He now has a nice blue cast on his leg and I am claiming he has become a Kentucky fan. I think he just likes blue but I can hope he will come over to the blue side. The cast will keep his leg fully extended for 2 weeks. The brace he was wearing had a little too much give and they need for him to keep it completely straight for 2 weeks. When the cast is removed, his wound will be taken care of and his stitches will be removed. The doctors are truly amazed at how well his leg is healing. He started physical therapy yesterday to strengthen his upper leg muscles. This made him a little sore and he had some pain but other than that he has been pain free. Hurray!!! Sarah and Charles are so pleased with his progress and NO complications.
Tyler is in school. Not real school but he is having private tutoring provided by St. Jude. He started chapter 1 in Algebra and is flying through it. He will be caught up in no time.
Ally is still with the family taking very good care of them. Sarah and Charles have decided to celebrate their anniversary early and fly to Cancun for a few days since they have such great help at home. I am so happy they are getting some time together. They sure do deserve it. Pray for good weather, safety and all is well at home while they are gone.
What are you dressing as for Halloween? Tyler has decided to go as a wounded soldier. His blue cast will fit into his outfit perfectly. Sarah said when he told her that the other day, she was so proud of his attitude and how he has responded to this horrible situation. It is obvious he has trust and faith in God. It shows in his attitude and actions. Tyler, we are all so proud of you! We can't wait to see you.
Stay close! Kim
Take time for prayer
Saturday, October 11
Tyler's counts are slowly dropping which is normal. They should bottom out today or tomorrow and then begin to rise again. Next week should be an encouraging week, when he will feel his best. Ally leaves on Monday and the family will be on their own. She helped Sarah a lot and the family will greatly miss Ally and Aiko, her niece.
Tyler began school with dad this week. Charles is great at math especially Algebra and I think that is the toughest subject to learn. Charles met Tyler's tutor from St. Jude and he will begin teaching him the curriculum that Christian Academy teaches their 8Th graders. Tyler is such a strong student academically that he will sail through the work easily. Tyler will be in great hands and where he needs to be when he returns to school. We are looking forward to that day with great anticipation.
Tyler's counts are slowly dropping which is normal. They should bottom out today or tomorrow and then begin to rise again. Next week should be an encouraging week, when he will feel his best. Ally leaves on Monday and the family will be on their own. She helped Sarah a lot and the family will greatly miss Ally and Aiko, her niece.
Tyler began school with dad this week. Charles is great at math especially Algebra and I think that is the toughest subject to learn. Charles met Tyler's tutor from St. Jude and he will begin teaching him the curriculum that Christian Academy teaches their 8Th graders. Tyler is such a strong student academically that he will sail through the work easily. Tyler will be in great hands and where he needs to be when he returns to school. We are looking forward to that day with great anticipation.
"The Race for the Cure" was held this morning in Louisville. Over 8,000 people were expected to run for a special cause...cancer. Take time to pray for someone you know who has cancer today. Life is fragile!
Stay Clsoe! Kim
Time with the family
Monday, October 6
Since Tyler was discharged from the hospital on Saturday, he has been spending time with his family at home. He has to be careful not to contract any germs during this rebound period after his chemo. His numbers will drop over the next 5 - 7 days but will rise again. He is prone to infection and susceptible to catching anything in the air. He has to stay at home secluded and safe from germs. He has been watching a lot of movies. Charles said he will be a movie trivia expert soon. Uncle Aaron has over 300 movies and Tyler is on his way to watching all of them. Sarah and Charles are finding things to do around the house like fix the door. Charles is enjoying just being with Sarah, taking Elijah to school and picking him up, playing with Christian and taking care of Tyler. He has taken a medical leave from work to be with his family.
Charles and Sarah participated in the 24 hour run this past weekend. They ran for 17 miles and Charles was the one to call it quits. He had been at the hospital for 2 days and hadn't slept well or eaten right for a big race. He said it was a lot of fun though and is looking forward to the actual marathon in December sponsored by St. Jude. He and Sarah plan on running the entire 27.2 miles.
Tomorrow Tyler will head for his check up at the hospital. They will take blood draws and check his counts and after several hours he will return home. Tyler's leg is healing amazingly well. The doctor's said he is a model patient. Not only is it healing quickly but he has movement in his toes and is moving around so well on his crutches. He still has to keep it elevated all day. He is taking pain medicine only when he needs it.
Elijah is enjoying school. He will have his fall break Thursday through Monday and Charles would love to take the family somewhere but it is doubtful because of Tyler's recovery. We can pray about it and if it is God's will, it will happen. Ally leaves on Monday and she will be greatly missed by the family.
Only 10 more weeks of chemo! That sounds like a lot but really after what they have been through it should be easier now. It won't be actually 10 weeks because they only count the weeks he receives the chemo but we see the light at the end of the tunnel. What a glorious light that is. Tyler, we are in awe of your strength, endurance and attitude. You have been an amazing patient and we are so proud of you. We love you!
Stay close! Kim
Since Tyler was discharged from the hospital on Saturday, he has been spending time with his family at home. He has to be careful not to contract any germs during this rebound period after his chemo. His numbers will drop over the next 5 - 7 days but will rise again. He is prone to infection and susceptible to catching anything in the air. He has to stay at home secluded and safe from germs. He has been watching a lot of movies. Charles said he will be a movie trivia expert soon. Uncle Aaron has over 300 movies and Tyler is on his way to watching all of them. Sarah and Charles are finding things to do around the house like fix the door. Charles is enjoying just being with Sarah, taking Elijah to school and picking him up, playing with Christian and taking care of Tyler. He has taken a medical leave from work to be with his family.
Charles and Sarah participated in the 24 hour run this past weekend. They ran for 17 miles and Charles was the one to call it quits. He had been at the hospital for 2 days and hadn't slept well or eaten right for a big race. He said it was a lot of fun though and is looking forward to the actual marathon in December sponsored by St. Jude. He and Sarah plan on running the entire 27.2 miles.
Tomorrow Tyler will head for his check up at the hospital. They will take blood draws and check his counts and after several hours he will return home. Tyler's leg is healing amazingly well. The doctor's said he is a model patient. Not only is it healing quickly but he has movement in his toes and is moving around so well on his crutches. He still has to keep it elevated all day. He is taking pain medicine only when he needs it.
Elijah is enjoying school. He will have his fall break Thursday through Monday and Charles would love to take the family somewhere but it is doubtful because of Tyler's recovery. We can pray about it and if it is God's will, it will happen. Ally leaves on Monday and she will be greatly missed by the family.
Only 10 more weeks of chemo! That sounds like a lot but really after what they have been through it should be easier now. It won't be actually 10 weeks because they only count the weeks he receives the chemo but we see the light at the end of the tunnel. What a glorious light that is. Tyler, we are in awe of your strength, endurance and attitude. You have been an amazing patient and we are so proud of you. We love you!
Stay close! Kim
Hanging at the hospital
Friday, October 3
It is the last day of chemo for this round. Tyler started feeling poorly yesterday but only threw up once. Charles stayed at the hospital last night and Tyler woke up in the middle of the night so they watched a movie until he got sleepy. This round of chemo really wears his body down as though he has the flu. That is why he needs 2 weeks to recover before another round. He will sleep a lot for the next few days to rebound. Uncle Aaron is staying with Tyler tonight so that Charles and Sarah can run.
Running 27 miles "is a social thing" according to Sarah. How can you talk when you run that far? I wouldn't be able to breathe let alone talk. It is a great way for Sarah and Charles to spend time together. I am thankful that they have found something they enjoy doing together. Sarah has a game plan to stay close with her coach. His advice was to take it "Slow and Sweet like molasses".
Tyler will be released from the hospital tomorrow morning and will get to hang out at home for a while before his next round of chemo. It is definitely more fun at home than in the hospital. Hang in there Tyler! We love you and miss you!
Stay close! Kim
It is the last day of chemo for this round. Tyler started feeling poorly yesterday but only threw up once. Charles stayed at the hospital last night and Tyler woke up in the middle of the night so they watched a movie until he got sleepy. This round of chemo really wears his body down as though he has the flu. That is why he needs 2 weeks to recover before another round. He will sleep a lot for the next few days to rebound. Uncle Aaron is staying with Tyler tonight so that Charles and Sarah can run.
Running 27 miles "is a social thing" according to Sarah. How can you talk when you run that far? I wouldn't be able to breathe let alone talk. It is a great way for Sarah and Charles to spend time together. I am thankful that they have found something they enjoy doing together. Sarah has a game plan to stay close with her coach. His advice was to take it "Slow and Sweet like molasses".
Tyler will be released from the hospital tomorrow morning and will get to hang out at home for a while before his next round of chemo. It is definitely more fun at home than in the hospital. Hang in there Tyler! We love you and miss you!
Stay close! Kim
Hanging at the Hospital
Wednesday, October 1
Could it be October already? The time is passing so quickly but not quick enough for Tyler. He started week 12 of his chemo treatment yesterday evening. Charles stayed yesterday and last night and Sarah took over today. Even though this is the tough round of chemo with Doxorubicin and Cisplatin the doctors added a steroid to help with the nausea and it's working. He will remain in the hospital until Saturday morning. Tyler is feeling good and is looking good according to mom. He has his rosy cheeks. This round of chemo makes his counts drop so he will have 2 weeks off to recover. Even though Tyler hasn't eaten much these past couple of weeks his weight has remained around 96 pounds. His doctor's have done a nice job with the TPN fluids. The fluids have given him the calories and nutrients he has needed to maintain his weight.
The doctor's never fully determined what caused his severe pain after surgery. It might have been a reaction to the medicine in the pain block or a spinal headache whatever the cause, Sarah is convinced God released the pain to make Tyler better.
Tyler still has to keep his leg straight while the incision heals. It will take around 6 weeks and then he will begin physical therapy. He needs to be able to bend his leg before PT begins. He is doing great on his crutches. Lunetha, his wound nurse, comes to check his leg several times a day. Evidently it still looks ugly. Sarah took pictures of it so Tyler can see it later. He doesn't have any desire to look at it now. I don't blame him for that. The ugliest part is the skin graph. The doctor's surgical placed a piece of Tyler's skin from his upper thigh over the area where the tumor was removed. It is just starting to dry up and heal but Sarah said you could actually see his muscle through the skin. Yuck! Tyler likes for his leg to remain bandaged so he doesn't have to look at it.
Tyler got news today that he will receive a "Make A Wish". All St. Jude patients receive this and what a nice gift. Dr. Mauer asked him to think about where he would like to go. This is something to look forward to. Tyler, I hope you pick something very special and fun, you sure deserve it!
Sarah and Charles are participating in a 24 hour run on Friday. The "running group" that Sarah joined a few weeks ago is participating. The purpose is to raise money for a team to go to Haiti on a mission trip. Their team's goal is to raise $1500 and they are very close. It is a great way to raise money and train for a marathon. Running 27 miles doesn't sound like too much fun to me but Sarah and Charles are really looking forward to it.
We are thankful that the surgery is behind them. Tyler needs to remain strong and tough to get through these next few months of chemo. I am looking forward to seeing the family back home again. Continue to keep the family in your prayers. God has wrapped his arms around them and your prayers have carried them through. Thank you!
Stay close, Kim
Warning! Pictures of Tyler's leg during surgery. Not for the faint of heart!
The first picture is Tyler's tumor with all the surrounding tissue and bone removed.
The second is what his leg looked like with the tumor out.
The third is the prosthesis they put in.
The fourth shows the gastroc flap the made to anchor Tylers tendons and muscles to and close over the prosthesis.
The last shows everything all stitched up with the skin graft.
Could it be October already? The time is passing so quickly but not quick enough for Tyler. He started week 12 of his chemo treatment yesterday evening. Charles stayed yesterday and last night and Sarah took over today. Even though this is the tough round of chemo with Doxorubicin and Cisplatin the doctors added a steroid to help with the nausea and it's working. He will remain in the hospital until Saturday morning. Tyler is feeling good and is looking good according to mom. He has his rosy cheeks. This round of chemo makes his counts drop so he will have 2 weeks off to recover. Even though Tyler hasn't eaten much these past couple of weeks his weight has remained around 96 pounds. His doctor's have done a nice job with the TPN fluids. The fluids have given him the calories and nutrients he has needed to maintain his weight.
The doctor's never fully determined what caused his severe pain after surgery. It might have been a reaction to the medicine in the pain block or a spinal headache whatever the cause, Sarah is convinced God released the pain to make Tyler better.
Tyler still has to keep his leg straight while the incision heals. It will take around 6 weeks and then he will begin physical therapy. He needs to be able to bend his leg before PT begins. He is doing great on his crutches. Lunetha, his wound nurse, comes to check his leg several times a day. Evidently it still looks ugly. Sarah took pictures of it so Tyler can see it later. He doesn't have any desire to look at it now. I don't blame him for that. The ugliest part is the skin graph. The doctor's surgical placed a piece of Tyler's skin from his upper thigh over the area where the tumor was removed. It is just starting to dry up and heal but Sarah said you could actually see his muscle through the skin. Yuck! Tyler likes for his leg to remain bandaged so he doesn't have to look at it.
Tyler got news today that he will receive a "Make A Wish". All St. Jude patients receive this and what a nice gift. Dr. Mauer asked him to think about where he would like to go. This is something to look forward to. Tyler, I hope you pick something very special and fun, you sure deserve it!
Sarah and Charles are participating in a 24 hour run on Friday. The "running group" that Sarah joined a few weeks ago is participating. The purpose is to raise money for a team to go to Haiti on a mission trip. Their team's goal is to raise $1500 and they are very close. It is a great way to raise money and train for a marathon. Running 27 miles doesn't sound like too much fun to me but Sarah and Charles are really looking forward to it.
We are thankful that the surgery is behind them. Tyler needs to remain strong and tough to get through these next few months of chemo. I am looking forward to seeing the family back home again. Continue to keep the family in your prayers. God has wrapped his arms around them and your prayers have carried them through. Thank you!
Stay close, Kim
Warning! Pictures of Tyler's leg during surgery. Not for the faint of heart!
The first picture is Tyler's tumor with all the surrounding tissue and bone removed.
The second is what his leg looked like with the tumor out.
The third is the prosthesis they put in.
The fourth shows the gastroc flap the made to anchor Tylers tendons and muscles to and close over the prosthesis.
The last shows everything all stitched up with the skin graft.
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