Posted by Mommy
We had good news at last today. We went to the clinic last week Tuesday with CJ’s ANC only at 200 and is hemoglobin a little on the low side, so they had us come back on Friday. Friday his ANC was up to 500 but his hemoglobin down a little more. It was border line on him getting another blood transfusion. They decided they would give him a couple more days and if his hemoglobin didn’t come up he would have to give him another blood transfusion this Monday. We came into the clinic this morning ready for anything. We were thrilled that his ANC is up to 1100, and his hemoglobin is up also. That means maintenance starts next Tuesday! We have to go in early on Tuesday for another sleepy test, and chemo. He will also have to start taking a chemo pill daily and steroids five days a month.
We have been practicing taking pills this week so we can be ready. After talking to the clinic’s therapist about methods on getting kids to take pills, CJ is becoming a pro at it. We started with Nerds candy since they are so small, and then we moved up to mini M&M’s, and finally regular size M&M. He is excited that he won’t have to taste the yucky pills, and wants to be the best pill taker in the whole world. I told him to keep practicing and he could be. We even have Hunter clapping for CJ every time he swallows a piece of candy. I just hope this continues when we get the pills and he has to take steroids at the same time.
We are just so glad that we are out of the scary part of his treatment. We are looking forward to getting back to normal, or at least starting our new normal. For the most part we will only have to go to the clinic once a month. This means preschool will be possible in the near future. Just keep praying for no relapses so the next two years will go by fast.
Monday, August 31, 2009
Tuesday, August 25, 2009
Last week of delayed intensification
Posted by Mommy
We finished another very long week. We had a rough start at the clinic last week, but it did get better. We had daily chemo in the mornings at home on Wednesday, Thursday, and Friday. CJ had gotten used to the in home nurse, and would help her each morning, asking questions the entire time. CJ seemed to have lots of energy running around the house, but taking naps in the middle of the day, which is not usual. On Friday morning the nurse came for the daily chemo, and drew blood to test just to make sure CJ counts were not too low. The nurse took his “straw” out and we went on with our day. By 11am the clinic called and told us to go to the hospital because his hemoglobin levels were too low, and he had to get a blood transfusion.
At the hospital we didn’t even make it up to the 7th floor before the joy cart stopped us. CJ got to pick out a new toy to play with before we even registered. At the 7th floor we had a quick wait before we were in a room. CJ was in a good mood, playing with his new transformer, not to mention the new toy car from his Happy Meal we got on the way to the hospital. CJ did not want to get his straw put back in. Before the nurses had a chance the Joy cart stopped by the room. I let them know that we already had a turn in the elevator, but he insisted that CJ get something else also. So now we have three more cars. When it came time to access his port the fit started. We had to have two nurses come in plus me to hold him down to get it done. Then when it was over he was fighting mad. He refused to let the nurses do anything else, no blood pressures, and no temperatures, no anything. Shortly after the fighting fit, he calmed down and fell asleep. He slept for two hours before waking up to the nurse hooking up the blood to his straw. But he decided he was going to be good then, since I explained to him that bad boys don’t get to play with toys or get to watch TV only good boys do. After being good for a while and telling the nurses and me sorry for being bad the child life person came by with more toys. She brought a couple different things but he picked the sword. For the next four hours CJ got blood as we watched Scooby Doo over and over again. At 7:45pm the nurse came in and unhooked CJ for the second time for the day and we went home, eight hours after arriving.
Our weekend was quiet at home, with CJ telling us how he got super hero blood so now he is a super hero. He also told us and everyone who would listen that the nurse took his blood out Friday morning and she should have just left it in so he wouldn’t have had to go and get blood from the other doctor.
Today we went to the clinic for counts only. We were only in the clinic for 30 minutes before we got to go home today. His ANC was only 200, so we are on lockdown. They want us back in the clinic on Friday to check his counts again to make sure he doesn’t need another blood transfusion. So until Friday we will be at home on lockdown resting and hoping his counts go back up.
We finished another very long week. We had a rough start at the clinic last week, but it did get better. We had daily chemo in the mornings at home on Wednesday, Thursday, and Friday. CJ had gotten used to the in home nurse, and would help her each morning, asking questions the entire time. CJ seemed to have lots of energy running around the house, but taking naps in the middle of the day, which is not usual. On Friday morning the nurse came for the daily chemo, and drew blood to test just to make sure CJ counts were not too low. The nurse took his “straw” out and we went on with our day. By 11am the clinic called and told us to go to the hospital because his hemoglobin levels were too low, and he had to get a blood transfusion.
At the hospital we didn’t even make it up to the 7th floor before the joy cart stopped us. CJ got to pick out a new toy to play with before we even registered. At the 7th floor we had a quick wait before we were in a room. CJ was in a good mood, playing with his new transformer, not to mention the new toy car from his Happy Meal we got on the way to the hospital. CJ did not want to get his straw put back in. Before the nurses had a chance the Joy cart stopped by the room. I let them know that we already had a turn in the elevator, but he insisted that CJ get something else also. So now we have three more cars. When it came time to access his port the fit started. We had to have two nurses come in plus me to hold him down to get it done. Then when it was over he was fighting mad. He refused to let the nurses do anything else, no blood pressures, and no temperatures, no anything. Shortly after the fighting fit, he calmed down and fell asleep. He slept for two hours before waking up to the nurse hooking up the blood to his straw. But he decided he was going to be good then, since I explained to him that bad boys don’t get to play with toys or get to watch TV only good boys do. After being good for a while and telling the nurses and me sorry for being bad the child life person came by with more toys. She brought a couple different things but he picked the sword. For the next four hours CJ got blood as we watched Scooby Doo over and over again. At 7:45pm the nurse came in and unhooked CJ for the second time for the day and we went home, eight hours after arriving.
Our weekend was quiet at home, with CJ telling us how he got super hero blood so now he is a super hero. He also told us and everyone who would listen that the nurse took his blood out Friday morning and she should have just left it in so he wouldn’t have had to go and get blood from the other doctor.
Today we went to the clinic for counts only. We were only in the clinic for 30 minutes before we got to go home today. His ANC was only 200, so we are on lockdown. They want us back in the clinic on Friday to check his counts again to make sure he doesn’t need another blood transfusion. So until Friday we will be at home on lockdown resting and hoping his counts go back up.
Tuesday, August 18, 2009
Almost there
Posted by Mommy
We made it through are first week of week long chemo treatment. Each day got a little better than the day before with CJ getting used to the in home nurse coming over each day. He even got his port de-accessed with no problems. In fact he sat in a chair by himself just asking the nurse questions the entire time she worked on him.
Today we went into the clinic with CJ in a bad mood. He didn’t want to take his morning medicine, or put on his magic cream over his port. He did okay getting his finger poke done to check his counts, and didn’t have any problems with the doctor coming in to give him a check up. His ANC was only 500 but at this stage chemo still continues. He decided he didn’t want his port accessed and especially didn’t want to keep it accessed for the rest of the week. After fighting and having to hold CJ down kicking and screaming to get his port accessed, we left with both of us mad. But the good thing with CJ is by the time we got home he was over being mad and talking my ear off about everything he knows, which is a lot, (just ask him).
The rest of this week we will have to go through three more days of chemo, with the in home nurse coming each morning. On Friday she will give CJ his chemo and take blood to check his counts just in case they fall too low, and he needs blood before the weekend. Next week we go in for just a count check, as long as his counts aren’t too low. Then we will have a couple of weeks off from chemo before maintenance starts. We are staying strong, knowing that the hardest part is almost over. Less than a month and our weekly or more visits go down to monthly, and maybe we can get back to a little bit more normal life.
We made it through are first week of week long chemo treatment. Each day got a little better than the day before with CJ getting used to the in home nurse coming over each day. He even got his port de-accessed with no problems. In fact he sat in a chair by himself just asking the nurse questions the entire time she worked on him.
Today we went into the clinic with CJ in a bad mood. He didn’t want to take his morning medicine, or put on his magic cream over his port. He did okay getting his finger poke done to check his counts, and didn’t have any problems with the doctor coming in to give him a check up. His ANC was only 500 but at this stage chemo still continues. He decided he didn’t want his port accessed and especially didn’t want to keep it accessed for the rest of the week. After fighting and having to hold CJ down kicking and screaming to get his port accessed, we left with both of us mad. But the good thing with CJ is by the time we got home he was over being mad and talking my ear off about everything he knows, which is a lot, (just ask him).
The rest of this week we will have to go through three more days of chemo, with the in home nurse coming each morning. On Friday she will give CJ his chemo and take blood to check his counts just in case they fall too low, and he needs blood before the weekend. Next week we go in for just a count check, as long as his counts aren’t too low. Then we will have a couple of weeks off from chemo before maintenance starts. We are staying strong, knowing that the hardest part is almost over. Less than a month and our weekly or more visits go down to monthly, and maybe we can get back to a little bit more normal life.
Thursday, August 13, 2009
Start of a very long week
Posted by Mommy
CJ had a really good week last week, and he was due one. After another week on steroids his counts were up to 3200. This makes me think the only good thing about steroids is they make his counts go up. After he ended the steroids his attitude was better and his aches were down. He got to get out of the house and spend the night with his dad. He also got to go to the zoo. He rode around in his wagon with Hunter looking at all the animals. We spent the most time making duck calls at the ducks and trying to get them to call back. Hunter is really good at this.
I could tell on Sunday CJ was starting to feel at little bad, which usually means his counts are coming down. He was being moody and wanting to take naps. Hunter went to Ganny’s house Saturday night and stayed until Wednesday morning, because we knew what this next week was going to be like. This was a very good thing as CJ doesn’t handle Hunter wanting to play with him very well when he doesn’t feel good.
Tuesday we were scheduled to be at the clinic at 8:00 am, and then we were expected at Kosair’s OMO by 9:30 am to start the longest day of out patient treatment. I was told last week to expect at least 8 hours. Clinic went fine; CJ was in a good mood and let the doctor examine him without complaint. His ANC was only 750, which is the minimum it had to be to start chemo this week. We were out and headed to OMO around 9:00.
When we arrived at OMO around 9:15 we were told they didn’t have a room for CJ. This did not make any of us happy. CJ had to have a spinal tap, so he had not had anything to eat or drink all morning. The only good thing about having to wait on the 7th floor is CJ got to go to the play room to wait. We played in the playroom for 2 hours without a room. CJ was getting tired and hungry so we went back to the waiting room to watch TV and rest. By this time CJ was very cranky and fussing. I tried to comfort him as much as I could, but I wanted to lady at registration to hear him to know how bad of a thing they were doing to make a four year old wait this long without eating and drinking. Luckily he fell asleep for the next hour. After he woke up we finally got a room, 3 ½ hours after arriving at OMO.
After getting into a room I started pulling at things in the suitcase I packed to keep CJ busy on this long day. First Greg and CJ played against me on go fish. CJ really enjoyed that. Then it was time to get his port accessed. CJ was not in a good mood by this time and it took three of us to get the job done. Shortly after that the sedation lady came in and started to take the edge off. I sent Greg down to McDonald’s as soon as CJ was out. By this time it was after 1 pm, and all three of us were starving, since there was no way any of us would eat since CJ couldn’t. As soon as he woke up from the sedation he was hungry. He had to get some liquids in him before he was allowed to eat. As soon as he could he was eating French fries. When the spinal tap was over they hooked CJ up to liquids before he could start the hour long chemo. It took 2 ½ hours before they started the chemo, then an hour of chemo, and three more hours of liquids. We had an evening of watching movies, reading books, and playing go fish and tic tac toe, all that I had packed for the long day along with snacks, along with the computer to help Greg and I not go nuts.
With two hours of liquids left we were moved to 7 West so OMO could shut down for the day. All I could think is if they would have had a room waiting for us like they were should had, we would have left by now. When going to 7 West we went back to the playroom. They had a room for us, but it wasn’t clean yet. It didn’t get cleaned until 8 pm. We played Candy Land and Chutes and Ladders, along with basketball the next two hours before finally leaving at 8:50 pm.
CJ had to leave his port accessed for the next three days. We have to have a home nurse come and give CJ chemo on Wednesday, Thursday, and Friday. Wednesday the home nurse came to give CJ chemo. It went pretty well. Hunter was napping, and CJ just woke up from his nap about 30 minutes before the chemo. He wasn’t real happy to have it done, but he didn’t fight it either. Hopefully now that he has met the nurse it will go better the next two days. Friday the home nurse will un-access his port and we will have the weekend off before going back to the clinic on Tuesday to start over, minus the long day. We will still have to do the chemo four days in a row. CJ also has to start taking a pill every night. This is a challenge, so if anyone has any suggestions on how to get a stubborn four year to swallow a pill let me know.
CJ had a really good week last week, and he was due one. After another week on steroids his counts were up to 3200. This makes me think the only good thing about steroids is they make his counts go up. After he ended the steroids his attitude was better and his aches were down. He got to get out of the house and spend the night with his dad. He also got to go to the zoo. He rode around in his wagon with Hunter looking at all the animals. We spent the most time making duck calls at the ducks and trying to get them to call back. Hunter is really good at this.
I could tell on Sunday CJ was starting to feel at little bad, which usually means his counts are coming down. He was being moody and wanting to take naps. Hunter went to Ganny’s house Saturday night and stayed until Wednesday morning, because we knew what this next week was going to be like. This was a very good thing as CJ doesn’t handle Hunter wanting to play with him very well when he doesn’t feel good.
Tuesday we were scheduled to be at the clinic at 8:00 am, and then we were expected at Kosair’s OMO by 9:30 am to start the longest day of out patient treatment. I was told last week to expect at least 8 hours. Clinic went fine; CJ was in a good mood and let the doctor examine him without complaint. His ANC was only 750, which is the minimum it had to be to start chemo this week. We were out and headed to OMO around 9:00.
When we arrived at OMO around 9:15 we were told they didn’t have a room for CJ. This did not make any of us happy. CJ had to have a spinal tap, so he had not had anything to eat or drink all morning. The only good thing about having to wait on the 7th floor is CJ got to go to the play room to wait. We played in the playroom for 2 hours without a room. CJ was getting tired and hungry so we went back to the waiting room to watch TV and rest. By this time CJ was very cranky and fussing. I tried to comfort him as much as I could, but I wanted to lady at registration to hear him to know how bad of a thing they were doing to make a four year old wait this long without eating and drinking. Luckily he fell asleep for the next hour. After he woke up we finally got a room, 3 ½ hours after arriving at OMO.
After getting into a room I started pulling at things in the suitcase I packed to keep CJ busy on this long day. First Greg and CJ played against me on go fish. CJ really enjoyed that. Then it was time to get his port accessed. CJ was not in a good mood by this time and it took three of us to get the job done. Shortly after that the sedation lady came in and started to take the edge off. I sent Greg down to McDonald’s as soon as CJ was out. By this time it was after 1 pm, and all three of us were starving, since there was no way any of us would eat since CJ couldn’t. As soon as he woke up from the sedation he was hungry. He had to get some liquids in him before he was allowed to eat. As soon as he could he was eating French fries. When the spinal tap was over they hooked CJ up to liquids before he could start the hour long chemo. It took 2 ½ hours before they started the chemo, then an hour of chemo, and three more hours of liquids. We had an evening of watching movies, reading books, and playing go fish and tic tac toe, all that I had packed for the long day along with snacks, along with the computer to help Greg and I not go nuts.
With two hours of liquids left we were moved to 7 West so OMO could shut down for the day. All I could think is if they would have had a room waiting for us like they were should had, we would have left by now. When going to 7 West we went back to the playroom. They had a room for us, but it wasn’t clean yet. It didn’t get cleaned until 8 pm. We played Candy Land and Chutes and Ladders, along with basketball the next two hours before finally leaving at 8:50 pm.
CJ had to leave his port accessed for the next three days. We have to have a home nurse come and give CJ chemo on Wednesday, Thursday, and Friday. Wednesday the home nurse came to give CJ chemo. It went pretty well. Hunter was napping, and CJ just woke up from his nap about 30 minutes before the chemo. He wasn’t real happy to have it done, but he didn’t fight it either. Hopefully now that he has met the nurse it will go better the next two days. Friday the home nurse will un-access his port and we will have the weekend off before going back to the clinic on Tuesday to start over, minus the long day. We will still have to do the chemo four days in a row. CJ also has to start taking a pill every night. This is a challenge, so if anyone has any suggestions on how to get a stubborn four year to swallow a pill let me know.
Saturday, August 1, 2009
Special Thanks
Posted by Mommy
I have a few special thanks I would like to give out. We have been blessed by having such great friends, family, church, co-workers, and CJ’s school mates; because of all of you we have one less worry. Having one less worry with this scary disease is a wonderful thing. We have had several fundraisers and without those I am not sure what we would have done.
First St. John’s School did a coin war among the students and challenged the church to match it. The church came close, but the school won. Also Kristi Heinz for making the braclettes in honor of CJ and raising money for CJ's fund by doing it. They are beautiful. Then Pillsbury and Sonoco held raffles and had donations for CJ, which was the most successful raffle they have ever had there. We also have to give out a special thanks to Russell Baumgart, and Rick Cates. Rick set up a raffle to win a date with Russell. Even though Russell wasn’t thrilled with the idea he was a great sport about the entire thing. Last the Java club from St. John’s Church held a big fundraiser at church last night. CJ got to go and had a great time jumping in the bounce house. We had a great turnout, and I think we might have raised enough money from all the fundraisers to pay for most of CJ’s medical care. We are truly blessed by all the support everyone has showed us. A thanks goes out to everyone who has helped with all the fundraisers and donated.
I have a few special thanks I would like to give out. We have been blessed by having such great friends, family, church, co-workers, and CJ’s school mates; because of all of you we have one less worry. Having one less worry with this scary disease is a wonderful thing. We have had several fundraisers and without those I am not sure what we would have done.
First St. John’s School did a coin war among the students and challenged the church to match it. The church came close, but the school won. Also Kristi Heinz for making the braclettes in honor of CJ and raising money for CJ's fund by doing it. They are beautiful. Then Pillsbury and Sonoco held raffles and had donations for CJ, which was the most successful raffle they have ever had there. We also have to give out a special thanks to Russell Baumgart, and Rick Cates. Rick set up a raffle to win a date with Russell. Even though Russell wasn’t thrilled with the idea he was a great sport about the entire thing. Last the Java club from St. John’s Church held a big fundraiser at church last night. CJ got to go and had a great time jumping in the bounce house. We had a great turnout, and I think we might have raised enough money from all the fundraisers to pay for most of CJ’s medical care. We are truly blessed by all the support everyone has showed us. A thanks goes out to everyone who has helped with all the fundraisers and donated.
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