Wimbo
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A few months ago, one of the posters here gave a link to a story about his son receiving some autographed Cowboys stuff... It was a special story because his son, Luke, is battling cancer. Luke is only 5-6 years old. Since then I have been following Luke's story in his CaringBridge journal. As a father of 2 kids, I can't imagine what Luke's parents are going through... And I certainly can't imagine what Luke is going through.
The update in the journal today upset me. Luke and his parents need some prayers. I pasted the latest entry below...
http://www.caringbridge.org/visit/lukestaley
We had a bad day at chemo yesterday. We switched chemo to Thursdays so Luke can get in three full days of school. He’ll take Thursdays off for chemo and hopefully get a full or partial day in on Friday depending on this energy level. I thought last week was bad, but this week was worse. Thank goodness Derek was back in town and we could go to chemo together and figure out why Luke is getting so sick after eight months of relatively no problems. Luke was able to get through the stats part of the check up, but as soon as he got to the access (port) room he started to get anxious and started spitting in the sink. Derek tried to reason with Luke and tell him that they hadn’t even started the medication yet and to try and relax. Then Luke started to vomit in the sink. He vomited until he was dry heaving. Our head chemo nurse Kathy Perko decided that this was probably an association problem and decided to give him something to relax him. The Ativan worked great and he relaxed completely. We were able to get through the Vincristine and then we started the Carboplatine. We were within about ten minutes of completing the hour drip of the Carboplatine when Luke started to cough and get anxious. Derek had left to get some food, and so I was alone. I assumed that Luke was reacting to the smell of the food trays that had arrived for the other patients. I took him outside to the children’s patio but it was too hot and he started to cough and complain of an itchy throat. Then he started to spit again to get the “taste” out of his mouth. I wheeled him back into the treatment area but the food smell was still too strong. So I thought we’d wait in the waiting area since he was almost done with the Carbo. (Luke is portable with his IV pole.) We almost got there and then he started to vomit violently in the hallway. Luke had the most defeated look on his face. We didn’t catch it in time to avoid his t-shirt and sweat pants. After cleaning him up Derek carried him to the waiting room. He seemed to do better but as he was sitting on my lap I noticed that he had huge hives forming on the back of his neck and back. Derek went to get our nurse and she had a calm but urgent look on her face. Parents of chemo kids can decipher this as “we may have a problem.” They put Luke in a private room and stripped off his clothing, (hospital gown). I was shocked to see huge hives forming all over his body. Places that didn’t have hives had large areas of what looked like burns. The skin was bright red and hot to touch. His ears looked like they were on fire and his face looked so odd, like chemo pasty white with a sunburn. All during this Luke was crawling out of his skin trying to itch every part of his body. Just writing this makes me cry. It was so awful. They gave him Benadryl, but after maxing out the dose of that they gave him a steroid. Finally the hives and redness started to recede. We all breathed a sigh of relief. Derek and I just looked at each other, no words to describe the ache we felt. Luke was more than ready to go home. After all this he was worried that I would not be at school in time to pick up Zach. He was right, but we had Christine cover for us knowing it might be a long day at the hospital.
So, the Doctors are thinking that Luke may be experiencing an allergic reaction to the chemo drug called Carboplatine. This is not uncommon in some children. Surprisingly some children do react after months of taking the Carbo with no problems. If this proves to be the case Luke will have to change this part of his chemo formula. The bad news is that the formula he’s receiving is considered to be the best for Luke’s type of tumor. The good news is that we still have other options that may be effective. Next week they will give Luke the Carbo again, but will prep him with a steroid drug and Benadryl to offset a reaction. Yes, I am scared but the Doctors/Nurses want to be sure that he is reacting to the Carbo before they give up on it. They’ve done it before, and don’t seem too anxious to give it to him again, although one nurse commented that Luke seemed to have a “significant” reaction. Sometimes it’s so hard to trust. I feel like I’m on a runaway train again, no where to get off.
After being home, Luke seemed fine. He played pretend touchdown football in the living room. Then I took him to Toys R Us and I bought him some Indiana Jones stuff. He was in heaven. Some of the moms call this “Feeding the Chemo Monster”. I could write a whole book dealing with the chemo monster moms create. I think I’m so worried about next week that I want to give him anything he wants before we go back to chemo. It’s so hard. He woke up this morning excited and full of energy ready to go to school. It is amazing the resilience of children. As I watched him run with the other children into the school, my heart ached for him. He told me yesterday at chemo that he just wants to be a “regular” boy. I told him that God wants more from him, and that he is special. He said he’s tired of being special. I said, “Everyone is praying for you because you are so special.” He liked that.
As I wrap up this entry, I just want to thank you for your prayers and beg for more on behalf of Luke. We need next week to answer the questions the Doctors have and we need Luke to not suffer. Pray for him please. The other day Luke and I were talking about his great grandmother who passed away last year. He likes to talk about what she’s doing in Heaven. Later that night in his prayers he blessed that we could all die the “good death”- the “death of being old.” I realized that as much as I miss her, she did die the “good death.” She died the death of a beloved woman who lived a full and wonderful life. Ultimately isn’t that what we all hope for?
Pray for Luke and his Doctors. Thank you! -Shannon
The update in the journal today upset me. Luke and his parents need some prayers. I pasted the latest entry below...
http://www.caringbridge.org/visit/lukestaley
We had a bad day at chemo yesterday. We switched chemo to Thursdays so Luke can get in three full days of school. He’ll take Thursdays off for chemo and hopefully get a full or partial day in on Friday depending on this energy level. I thought last week was bad, but this week was worse. Thank goodness Derek was back in town and we could go to chemo together and figure out why Luke is getting so sick after eight months of relatively no problems. Luke was able to get through the stats part of the check up, but as soon as he got to the access (port) room he started to get anxious and started spitting in the sink. Derek tried to reason with Luke and tell him that they hadn’t even started the medication yet and to try and relax. Then Luke started to vomit in the sink. He vomited until he was dry heaving. Our head chemo nurse Kathy Perko decided that this was probably an association problem and decided to give him something to relax him. The Ativan worked great and he relaxed completely. We were able to get through the Vincristine and then we started the Carboplatine. We were within about ten minutes of completing the hour drip of the Carboplatine when Luke started to cough and get anxious. Derek had left to get some food, and so I was alone. I assumed that Luke was reacting to the smell of the food trays that had arrived for the other patients. I took him outside to the children’s patio but it was too hot and he started to cough and complain of an itchy throat. Then he started to spit again to get the “taste” out of his mouth. I wheeled him back into the treatment area but the food smell was still too strong. So I thought we’d wait in the waiting area since he was almost done with the Carbo. (Luke is portable with his IV pole.) We almost got there and then he started to vomit violently in the hallway. Luke had the most defeated look on his face. We didn’t catch it in time to avoid his t-shirt and sweat pants. After cleaning him up Derek carried him to the waiting room. He seemed to do better but as he was sitting on my lap I noticed that he had huge hives forming on the back of his neck and back. Derek went to get our nurse and she had a calm but urgent look on her face. Parents of chemo kids can decipher this as “we may have a problem.” They put Luke in a private room and stripped off his clothing, (hospital gown). I was shocked to see huge hives forming all over his body. Places that didn’t have hives had large areas of what looked like burns. The skin was bright red and hot to touch. His ears looked like they were on fire and his face looked so odd, like chemo pasty white with a sunburn. All during this Luke was crawling out of his skin trying to itch every part of his body. Just writing this makes me cry. It was so awful. They gave him Benadryl, but after maxing out the dose of that they gave him a steroid. Finally the hives and redness started to recede. We all breathed a sigh of relief. Derek and I just looked at each other, no words to describe the ache we felt. Luke was more than ready to go home. After all this he was worried that I would not be at school in time to pick up Zach. He was right, but we had Christine cover for us knowing it might be a long day at the hospital.
So, the Doctors are thinking that Luke may be experiencing an allergic reaction to the chemo drug called Carboplatine. This is not uncommon in some children. Surprisingly some children do react after months of taking the Carbo with no problems. If this proves to be the case Luke will have to change this part of his chemo formula. The bad news is that the formula he’s receiving is considered to be the best for Luke’s type of tumor. The good news is that we still have other options that may be effective. Next week they will give Luke the Carbo again, but will prep him with a steroid drug and Benadryl to offset a reaction. Yes, I am scared but the Doctors/Nurses want to be sure that he is reacting to the Carbo before they give up on it. They’ve done it before, and don’t seem too anxious to give it to him again, although one nurse commented that Luke seemed to have a “significant” reaction. Sometimes it’s so hard to trust. I feel like I’m on a runaway train again, no where to get off.
After being home, Luke seemed fine. He played pretend touchdown football in the living room. Then I took him to Toys R Us and I bought him some Indiana Jones stuff. He was in heaven. Some of the moms call this “Feeding the Chemo Monster”. I could write a whole book dealing with the chemo monster moms create. I think I’m so worried about next week that I want to give him anything he wants before we go back to chemo. It’s so hard. He woke up this morning excited and full of energy ready to go to school. It is amazing the resilience of children. As I watched him run with the other children into the school, my heart ached for him. He told me yesterday at chemo that he just wants to be a “regular” boy. I told him that God wants more from him, and that he is special. He said he’s tired of being special. I said, “Everyone is praying for you because you are so special.” He liked that.
As I wrap up this entry, I just want to thank you for your prayers and beg for more on behalf of Luke. We need next week to answer the questions the Doctors have and we need Luke to not suffer. Pray for him please. The other day Luke and I were talking about his great grandmother who passed away last year. He likes to talk about what she’s doing in Heaven. Later that night in his prayers he blessed that we could all die the “good death”- the “death of being old.” I realized that as much as I miss her, she did die the “good death.” She died the death of a beloved woman who lived a full and wonderful life. Ultimately isn’t that what we all hope for?
Pray for Luke and his Doctors. Thank you! -Shannon
ray:
God bless you little dude...i pray you get well soon...