July 31st update

9:30 a.m. Another post, another day. Day 7 in the hospital. Bennett continued with the fever last night so at midnight they gave him an antibiotic called meropenem. He is still getting the anti-nausea med and this has been working. He is still on the morphine drip and taking benadryl for the itching. He is still on TPN (total parenteral nutrition) bags of vitamins/fats. At 8:30 a.m. his fever had gone down to 99.4! Yeah! They went ahead though and gave him another dose of the antibiotic meropenem. They did a CBC blood test and electrolytes test this a.m.; waiting to hear results. He is still sleeping so not sure yet how he feels. Thank you for all your comments, thoughts and prayers as we are blessed with a huge support system!

2:30 p.m. Bennett and I was pleasantly surprised with Sid and Hamilton coming up this morning. It was so good to see them plus Hamilton and I went out and ate lunch while Sid stayed with Bennett. It was the best food I have had in a week! Bennett has a temp at 101.3, he just got Tylenol. They will continue to give him the antibiotic meropenem until the blood culture comes back negative. It takes 48 hours to get back the first test not 24 which will be tomorrow now. He has been trying to sleep today, he didn’t feel like visiting with his Dad/brother. They just started him on an iv antibiotic, fluconazole to clear up the white stuff in his mouth which he has thrush too besides mucositis. The biggest sores are on the sides of his cheeks right where his braces are so I am sure the braces are cutting into the sores. The CBC blood test and electrolytes test came back good. His ANC is 1,121. Here is a pic of Hamilton in front of a water fall close by the hospital. All the flowers were so beautiful!

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5:00 p.m. At 3:30, Bennett’s fever broke, he became very sweating and his temp went down to 99.7! Amen! He got up and got a sponge bath and new clothes. The morphine is really making him itchy. He is taking benadryl for this so they are looking at maybe trying another med. The nurse is de-accessing and re-accessing the needle in his port, you have to change it weekly. He has been awake looking through magazines his Dad brought him and watching TV for the last hour & 1/2.

9:00 p.m. Bennett’s still awake, He is feeling some better. His temp is now 98.2!  WOW! He has been sitting up in his bed, watching the Cardinal game, taking pictures on his camera, playing on his laptop and talking! 

“Rejoice evermore. Pray without ceasing. In every thing give thanks: for this is the will of God in Christ Jesus concerning you.”
I Thessalonians 5:16-18

Posted by Cindy on July 31st, 2007 in Updates | 5 Comments

July 30th update

10:30 a.m. Bennett has cleared the methotrexate. His level was .06 this morning. This means no more leucovorin and they have changed the rate of his fluids from 320 to 133 so we are done with methotrexate levels. Bennett received morphine every 2 hours last night, this made him itch so they gave him benadryl. He didn’t sleep well during the night because of all of this. This morning they decided to give him a morphine drip. Because he is on continuous morphine, he is hooked up to a machine that keeps track of his heart rate and oxygen level. It’s the same machine he’s on during his spinal taps/bone marrows.   They have started him on Nubain (another allergy med to keep him from itching) plus he has to take constipation medicine because constipation is another side effect of being on morphine. Now, that he is on morphine, he is rating his pain a 6. I got a chance to look at his mouth when the nurse practitioner checked him this morning.  It looks really bad and gross. He has a severe case.   

5:30 p.m. Alot has happened in the last 30 minutes. The nurse started Bennett on TPN which is 2 iv bags which will run over 24 hours, one has fats and the other has vitamins. They are concerned because he hasn’t ate/drank and with the mouth sores so bad that it will probably be awhile before he does. They weighed him and he weighs 113. This is a different scale than last Tuesday when he weighed 120 but it’s still 7 pounds. They started him on another mouth wash, this is swish and spit of chloride and bicarb and he still doing the magic wash. He also has a temp of 101.1, not good. As the nurse left after all of this, Bennett made a sign with his hands and I guessed “house”. He pointed to himself. I asked are you ready to go home and he nodded yes. I told him he had to start drinking/eating or their not going to let you go home. He said he would take some sprite, he has taken couple sips. He tried a grape and it really tasted funny and he spit out the skin.  He has now turned the TV on, this is the first time all day that he has been awake longer than couple of minutes. 

6:50 p.m. Bennett’s temp is 101.2. They have done a blood test to see why he has a fever. Please pray for good results from this test. He’s back to sleep and has shut off the TV.

8:30 p.m. Bennett’s temp is 101.1. They did a CBC to check his ANC to make sure it was in a good range to fight off infection. Bennett’s ANC was 1,768 which is Great! They also are doing a blood culture which we will find out the first results tomorrow. It will take 24 hours for them to see if anything grows and than they will keep checking it every 24 hours for the next 3 days to see if it grows any bacteria. They are holding off any antibiotics until these results or if the fever goes higher. 

Thank you for everyone’s prayers, please continue to uplift our precious boy!

“In my distress I called upon the Lord; I cried unto my God for help. From his temple, he heard my voice.”
Psalm 18:6

Posted by Cindy on July 30th, 2007 in Updates | 3 Comments

July 29th update

9:45 a. m. Well, we are still here. Bennett’s methotrexate level was .15. He is getting closer! I am sad that we won’t make Hamilton’s championship baseball game and it’s also his last game for the season. I’m not sure that Bennett would of felt like going. He feels pretty crummy.  He didn’t sleep as well last night. His mouth really bothers him and it is hurts to swallow.   Apparently the popicycles didn’t work! The Dr. recommends him to take morphine and Bennett wants to try it.  

1:15 p.m. The oncologist Dr. just came in to see Bennett. She wants him to stay the night and watch his mouth sores no matter what the 4:15 methotrexate level is. She wants to continue him on fluids as well because of him not eating/drinking for the last 4 1/2 days.   His mouth and throat is alot worse than last time. She is going to give him a stronger dose of morphine because of the sores being so painful in his mouth and throat.  

7:30 p.m. We just got Bennett’s methotrexate level back, they had to send the test to Barnes so it took longer. His level is .12 so we would be staying anyway with or without the bad mouth sores. So, we are still waiting and next draw will be at 4:15 a.m.  Bennett is feeling the same, watching some TV, he hasn’t gotten up today, hasn’t ate/drank nor talked. He was given bi-carb around 4:30 because his PH in his urine was low.         Hamilton’s team lost the championship game tonight.  

9:15 p.m. The nurse tonight asked Bennett if his mouth was better, he nodded yes. Than she asked him to rate the pain from 1 to 10 and he said a 9. She gave him more morphine and he can get it every 2 hours if needed. I asked him how much worse are they this time and he held up 4 fingers. 4 times worse.  He barely got the chemo pill down as it really hurt to swallow and this was after the morphine.  The methotrexate just burns all of the tissue in his mouth, throat and stomach.  The good news, We know if it has killed/hurt these tissues than it must be doing it’s job on killing the cancer. The Dr. indicated that at times if a patient doesn’t have any side effects, they wonder if the patient had enough methotrexate to kill the cancer cells and she said she is sure that Bennett has.

“Be strong and courageous, and do the work. Do not be afraid or discouraged, for the Lord God, my God, is with you.”  I Chronicles 28:20

    

Posted by Cindy on July 29th, 2007 in Updates | 4 Comments

July 28th update

9:00 a.m. Bennett’s methotrexate level went down to .51. This is good news, I was starting to get concerned and so were the nurses/Dr.  The creatinine level went from 1.1 to 1.0, I am so thankful it didn’t go up, this could be very serious.  His temp is good this morning. He has been sleeping.  Next draw is around 4:15. Congrats to Hamilton/team for winning the game last night, they play again tonight in the DuQuoin tourney.   

6:00 p.m. Thank you God for answering our prayers! His methotrexate level is going down! Last night, I was very nervous that it wasn’t going to and they were going to have to take emergency measures to get it to go down.  His methotrexate level is .29 now.  The creatinine level is still at 1.0.  Bennett’s mouth is bothering him and it is sore to swallow.  They have given him the “magic wash” which is 3 antiobitics that he swishes in his mouth and swallows it .  We are hoping and praying that he makes the .10 mark so we can come home. Today marks the 5th day in the hospital. 

10:00 p.m. What a great day for baseball! The Cardinals and Hamilton’s team won both of their games today! Hamilton’s team plays for the championship tomorrow at 4 in DuQuoin. I sure hope we are discharged so we can go. Bennett and I watched the Cards games today. He would sleep off and on. He didn’t feel like getting up though. His mouth really bothers him so he isn’t talking much. He is using his own sign language for us to communicate. Next level draw is at 4:15 a.m.

As I was looking for a scripture, I ran across this one that our pastor gave his sermon on Sunday.

“Come to me all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your soul. For my yoke is easy and my burden is light.” Matthew 11:28-30 

Posted by Cindy on July 28th, 2007 in Updates | 4 Comments

July 27th udpate

10:00 a.m. Bennett’s methotrexate level went up to .79 from this morning blood test.  They have given him furosemide again (water pill) so his urine output is greater than the amount of fluids he is taken in.  Yesterday his body was retaining the fluids. This should help the methotrexate level to go down too.  He has been trying to sleep this morning. No breakfast. Next level will be checked around 4:15. We both are a little more relaxed this time around, last time we had no idea what to expect. There is still the chance of him having severe side effects so we appreciate your prayers!

6:45 p.m. Bennett’s methotrexate level is .78. It is not going down as much as they would like. His creatinine level which has to do with your kidney’s is going up. It was .8 and the last two tests have show 1.0 and 1.1. They check this the same time as the methotrexate level.  They are going to do another test in 6 hours instead of waiting until 12 hours. It’s very important that both of these levels go down. Please say a special prayer regarding these levels.

Bennett also has been running a low temp, The last few hours it has been at 100. He just threw up about 30 minutes ago. He didn’t have much to throw up since he hasn’t ate or drank in 2 1/2 days. I asked the Dr. to look in Bennett’s mouth as he has been complaining that it feels funny. She indicated that it was red.  He has been watching TV some. Good Luck to Hamilton and his team tonight in the DuQuoin tourney! Wished we could be there Hambone! 

“Those who love me, I will deliver; I will protect those who know my name. When they call to me, I will answer them; I will be with them in trouble, I will rescue them and honor them. With long life I will satisfy them, and show them my salvation.” (Psalm 91:14-16)

Posted by Cindy on July 27th, 2007 in Updates | Comments Off on July 27th udpate

July 26th update

12:30 p.m. We just got back the blood test and the methotrexate level is 1.62. A tad higher than the previous time he was in the hospital which was 1.43. This is telling me that it will probably take to Sunday again to clear or maybe even longer (if you kinda go by last time #’s and days) I spoke to soon about not needing any bi-carb. He got some this morning because PH in urine was too low. They have increased the rate of fluid from 200 to 320. He received his first dose of leucovorin and will get that every 6 hours. This is the drug that helps lessen the side effects. He also gets anti-nausea med every 6 hours too. He hasn’t ate anything today, he has been sleeping most of the time, he did sit up in a chair for a few minutes while the nurse changed his bed. The next blood test is at 5:15. Nel, the friendly hospital dog came to visit, she is dressed in a lady bug outfit. She was posing for the picture!

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6:45 p.m. Bennett has been really tired today, not feeling very good. He has slept most of the day. He hasn’t felt like getting up or watching TV. He did move from his bed to my couch and ended up going to sleep as I rubbed his feet and back. Blood test just came back and his methotrexate level is .41. Please continue to pray that the side effects are minimal. Next draw should be at 5:15 a.m.

10:30 p.m.  Bennett threw up his chemo pill tonight. So he tried again and was able to get it down. He also is still taking the pain med for the tingling and pain in his hands and was able to get that pill down too. Him and I watched the Cardinal/Cub game off and on.  Bennett was excited when the grand slam and other home run was hit. Sorry Sid! Bennett likes the Cardinals and Sid likes the Cubs!

“Know therefore that the LORD your God is God; he is the faithful God, keeping his covenant of love to a thousand generations of those who love him and keep his commands.” – Deuteronomy 7:9

Posted by Cindy on July 26th, 2007 in Updates | 2 Comments

July 25th update

11:00 a.m. Bennett had some pain last night in his hands, this is a side effect from the vincristine. They gave him some pain med last night and this morning for this.

He didn’t eat breakfast, other than his popsicles. He has slept most of the morning. He feels ok other than being tired. Our roommate’s grandmother came for about an hour this morning, he is getting high dose of methotrexate too.

4:30 p.m. Bennett had 1/2 peanut butter/jelly sandwich for lunch. He is still eating his popsicles, he is being such a trooper, I would be getting sick of them by now. Bennett’s face is getting puffy, they said because of all of the methotrexate and fluids he is getting so quickly. They just gave him furosemide to make that better which means he will urinate more. Him and his roommate have been playing mario together.

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7:30 p.m. The methotrexate was finished at 5:30 tonight. The nurse did a blood test and his methotrexate level is 113. This is in normal range, anything below 150. This is higher than the first time which was 55.08. I don’t know if this means it will take longer to clear this time? They will do another blood test at 11:15 tomorrow. The level has to be at .10 before he is discharged.  He didn’t eat any dinner. He has been sleeping for the last several hours. They check his PH in his urine and so far this is good, last time they had to give him bi-carb because it wasn’t at the level it needed to be, so this is good.

“There is an appointed time for everything. And there is a time for every event under heaven..” Ecclesiastes 3:1

Posted by Cindy on July 25th, 2007 in Updates | 1 Comments

July 24th update

3:15 p.m. Dr. Shenoy thought Bennett looked good, she hasn’t seen him for about a month. She was on vacation when he did the last high dose. He gained 4 pounds since last Dr. appt (3 weeks ago). He weighs 120. This is the most he has weighed since he was diagnosed. He weighed 123 than. They have started the IV fluids checking his PH in his urine. Once it is at a certain level, they will begin the high dose methotrexate. This is Ju Li that visited Bennett in the clinic.

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5:30 p.m. Bennett received an iv push of vincristine, (chemo), his anti-nausea medicine and started the high dose of methotrexate at 5:15. We had pizza delivered for lunch and he is eating macaroni and cheese for dinner. He is drinking good. The last few days he has liked dr. pepper.

9:00 p.m. Brittani and Steve came to visit Bennett bringing him a chicken leg, cob of corn and rolls. And his favorite cucumbers and vinegar. He asked me today if a brought some and I didn’t. Thanks Steve and Brittani! Bennett has been eating popsicles, we were told by one of the nurses last time to try this next time. That eating something cold while getting the methotrexate might keep from getting the mouth sores.  We hope it works!  The methotrexate will go in for the next 24 hours finishing at 5:15 p.m. tomorrow night.  We have a room mate that came like 30 seconds after Bennett got in the room. He is a sweet boy, I feel sorry for him, he doesn’t have any family with him.

“Wealth and honor come from you; you are the ruler of all things. In your hands are strength and power to exalt and give strength to all.” 1 Corinthians 29:12

Posted by Cindy on July 24th, 2007 in Updates | 2 Comments

July 23rd update

3:00 p.m. I haven’t heard officially from St Louis yet on Bennett’s blood test. I got the results from local hospital and I figured his ANC at 1,323.  The rest of the blood test looks good. His sore in his mouth was better this morning. I can tell where it was, as it is red but it doesn’t have the white pocket on it anymore. We will leave at 7:30 for his appt with the Dr. and than we will wait to be admitted to the hospital to begin the high dose methotrexate and an iv push of vincristine. Please pray that Bennett has very few side effects from this next treatment. Your support and God’s is keeping us going!

Bennett stood me up tonight as we had a date to go the movies!  He went to Tyler’s house instead to swim  and play wiffle ball.  He had a great time!

Posted by Cindy on July 23rd, 2007 in General | 4 Comments

July 22nd update

Bennett is feeling good today again. We went to church, it was so good to see our church family! I’m glad Bennett was up to going and that his ANC is high enough to attend. Bennett and Hamilton went to Gpa/ma Johnston’s to fish this afternoon. They caught several fish that they are going to have for lunch tomorrow. We saw a snake swimming in the pond. Yeek! Gehrig came over this afternoon and the boys are playing baseball. They are going to camp out in our yard in the camper. I have a bet going if I am going to be camping out too!

Bennett still has his sore in his mouth, it’s smaller. I just figured it had to be gone with all the cucs and vinegar he’s been eating. He has been eating well this week, we are hoping that he might be back to his old weight. He’s weighed at home but it’s not the same as the Dr. scales. We go in the morning for CBC test , we expect it to be good since last week ANC was over a 1,000.

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Posted by Cindy on July 22nd, 2007 in General, Updates | 3 Comments

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