This past week was really a good week for CJ. He seemed to be feeling pretty well most of the time. He has been playful and settled...he just won't eat. Quite a difference from when he was receiving those steroids. I can remember the doctors commenting during the steroid eating bonanza that there would come a time that we would be begging him to eat. Well, here we are!
Since his counts were up, we took CJ on a field trip to the mall. He and Hunter needed new shoes so CJ, Hunter, Mommie and YaYa headed to the mall for shoes and lunch with Aunt Kim, Kristin, ViviAnne & Cooper. We had a great day and a great visit. I'm sure we were quite the sight with one little bald head and another just beginning to get her hair back. ViviAnne is so excited that her hair is coming back! CJ doesn't talk much about his missing hair. Of course, we really don't draw much attention to it. Once or twice I've heard him say that he doesn't want to be bald.
It was a fun day for CJ (and all of us for that matter). He likes his new shoes and he thinks it was great fun eating lunch at the shoe store. Sheree tried, but soon gave up explaining the concept of "the mall". As far as he's concerned, he saw and ate food at the shoe store!
Since we were in the neighborhood, we stopped by YaYa's office to meet some of her friends and co-workers. These are some of the greatest people you could ever meet. They have been very good to CJ and to his family. Their donation to CJ's fund has gone a long way toward helping with CJ's medical expenses. We are very grateful to everyone at KESA for their kind support. During our visit, CJ found a Staples "EAZY" button on our office manager's desk. I'm sure you've seen the commercials on TV. Well, when you push this button a recorded voice says, "That was easy!" Linda was happy to have CJ take that button home with him. I wondered how long it would take for Sheree to confiscate that thing and hide it from him.
The next day, CJ had an appointment at the clinic for his chemo treatment, a combination of the dreaded Vincristine and Methyltrexate. The Vincristine is the drug that causes the pain in his legs. It also causes nausea and other side effects so the docs gave him an anti-nausea drug to help with that. Apparently, the doctors increase the strength of these chemo treatments based on the patient's ANC levels. CJ's counts at the time were 1500 so the doctors increased his dosage this time around.
CJ brought his "Easy" button with him that day. After the finger poke, he pushed the button and got the message, "That was easy." Then came the magic cream (This is a topical anesthetic they use to numb the area where they access his port.) Again, the button said, "That was easy." After they administered the drugs (CJ calls it his energy juice), he hits his button again, "That was easy." He had the staff really tickled with his new toy and it added a little fun to the clinic trip that day. Other than the long wait to see the doctor, it was a pretty easy visit.
The next few days were very busy. CJ got to spend time Saturday afternoon, and again Sunday with his Dad and his family. And he got to go to Paps Chris's house on Monday.
Today, it was back to the clinic for the PEG shots - or, as CJ calls them, those "BAD PIG SHOTS". After the doctors increased his last chemo dosage, his ANC has dropped to 400. The doctors don't seem concerned, just cautious. With counts under 1000 he is home-bound again and Sheree and Greg have to be very careful about exposing him to virus or bacteria. This means they must watch his diet as well - no fresh baked goods, no fresh produce (that includes strawberries, poor guy), no deli meats, nothing that can carry bacteria - processed foods only. They must again limit visitors to the house, especially during this flu and allergy season.
Well, that's pretty much the situation for now. CJ's next clinic visit will be next Tuesday. I'm sure Sheree and Greg will be praying for an increase in the ANC so CJ can "come out and play". I feel so bad for all of them, being cooped up inside with no visitors. I've been following a couple of blogs for other children at different stages of A.L.L. It seems that this back and forth with the ANC is going to be our lives for the next few years. Even when CJ enters the maintenance phase of his treatment, his ANC will fluctuate up and down as the doctors adjust the chemo dosages. I read from one mom today that her three-year-old little girl has been home-bound for several weeks now so she set up a wading pool (without water) in her livingroom and let little Emma play in her bathing suit. These A.L.L. parents are constantly challenged to come up with creative ways of dealing with so many situations from being cooped up at home to talking their children in to taking their meds. It's just so hard to think about this going on for so long in these little lives.
We'll post again when there is news to share. Until then, our sincere "thank you" for all of your prayers and warm thoughts.
Tuesday, May 26, 2009
Friday, May 15, 2009
Interim Maintenance
Interim maintenance is the treatment phase CJ entered this past Tuesday. During this phase he will receive a chemo “push” every 10 days. This is a yellow liquid that is pushed through CJ’s port. He calls it his “energy medicine”. The treatment is over in minutes so trips to the clinic will be much shorter than what they have had to endure over the past couple of months. In addition to this chemo push, CJ will receive the PEG shots to his thighs periodically. This phase will last about 2 months. Then he goes into the delayed intensification phase and back on steroids for a couple of weeks.
Every time CJ goes to the clinic, they prick his finger to check his blood. You can imagine that he doesn’t like having this done and he hasn’t been too good about sitting still to let them do it. But Greg has come up with an idea that has helped so far. If you’ve ever had your finger pricked you know they use a disposable “needle” to do the stick. Well, Greg told CJ on the way to the clinic the other day that he thought CJ was so tough that they would have to throw away the needle after they stuck his finger. It would be too dull to use again. And sure enough, after the nurse did the stick, she had to toss that needle into the trash can. CJ was very proud that he was so tough. When they went back to the clinic this week, Greg wondered if CJ would still be so tough. CJ sat still, let the nurse stick his finger, and grinned when she had to throw that needle away as well. He showed Greg he was still that tough!
He also receives daily meds – much to his dislike! Getting CJ to take his medicine is a daily torture drill for Greg and Sheree. They have begged and threatened, punished and rewarded - but so far they haven’t found a magical fix to the problem. They always win in the end, but not without a serious battle. All I can say is, “Thank God he is a fighter!” That fighting spirit will get him through this long ordeal. And I’m so glad he feels well enough to put up the fight! I’ve been reading the blogs of other children diagnosed with A.L.L. and, in comparison, it seems that CJ is responding very well to his treatments. He has been very fortunate in that he appears to be tolerating the chemo treatments with minimal side-effects. During the last phase, he did have a few bouts of nausea and his legs still bother him at bit. But all-in-all, he seems to be handling all of this like a champ.
CJ has lost 10 of the 16 pounds he gained during the induction phase where he was getting daily doses of steroids. He is starting to look like himself again – at least as much as he can given that his hair is mostly gone. I think that bothers him a little. He has made a couple of comments about it, but he doesn’t really dwell on it. His personality is back, though. He loves to tease and play hard. It is so good to see him feeling well enough to run and play.
Thankfully, his counts are back up this week so he can leave the house for short trips and he can play outside. He really loves to be outside. While they were at the clinic Sheree asked the doctor about CJ’s breathing and a runny eye. She was really concerned that he may be getting the virus that is running through the family. After a thorough check, the doctor told her his breathing sounded great and he thought the runny eye was nothing more than allergies. He was right. The next day, CJ’s eye had cleared up and he was feeling great.
Save-The-Date! JULY 31 2009
A group of folks from St. John’s Lutheran Church in Lanesville is putting together a fund-raiser to help offset some of CJ’s medical expenses. I don’t have a complete list of activities, but there will be something for everyone. I do know they will be serving a spaghetti supper and are planning a euchre tournament, corn-hole tournament, a dessert auction and something for the little ones. I’ll provide a full list of activities later. I just wanted to make sure everyone knows the date and the location - July 31, 2009 at St. John’s.
Every time CJ goes to the clinic, they prick his finger to check his blood. You can imagine that he doesn’t like having this done and he hasn’t been too good about sitting still to let them do it. But Greg has come up with an idea that has helped so far. If you’ve ever had your finger pricked you know they use a disposable “needle” to do the stick. Well, Greg told CJ on the way to the clinic the other day that he thought CJ was so tough that they would have to throw away the needle after they stuck his finger. It would be too dull to use again. And sure enough, after the nurse did the stick, she had to toss that needle into the trash can. CJ was very proud that he was so tough. When they went back to the clinic this week, Greg wondered if CJ would still be so tough. CJ sat still, let the nurse stick his finger, and grinned when she had to throw that needle away as well. He showed Greg he was still that tough!
He also receives daily meds – much to his dislike! Getting CJ to take his medicine is a daily torture drill for Greg and Sheree. They have begged and threatened, punished and rewarded - but so far they haven’t found a magical fix to the problem. They always win in the end, but not without a serious battle. All I can say is, “Thank God he is a fighter!” That fighting spirit will get him through this long ordeal. And I’m so glad he feels well enough to put up the fight! I’ve been reading the blogs of other children diagnosed with A.L.L. and, in comparison, it seems that CJ is responding very well to his treatments. He has been very fortunate in that he appears to be tolerating the chemo treatments with minimal side-effects. During the last phase, he did have a few bouts of nausea and his legs still bother him at bit. But all-in-all, he seems to be handling all of this like a champ.
CJ has lost 10 of the 16 pounds he gained during the induction phase where he was getting daily doses of steroids. He is starting to look like himself again – at least as much as he can given that his hair is mostly gone. I think that bothers him a little. He has made a couple of comments about it, but he doesn’t really dwell on it. His personality is back, though. He loves to tease and play hard. It is so good to see him feeling well enough to run and play.
Thankfully, his counts are back up this week so he can leave the house for short trips and he can play outside. He really loves to be outside. While they were at the clinic Sheree asked the doctor about CJ’s breathing and a runny eye. She was really concerned that he may be getting the virus that is running through the family. After a thorough check, the doctor told her his breathing sounded great and he thought the runny eye was nothing more than allergies. He was right. The next day, CJ’s eye had cleared up and he was feeling great.
Save-The-Date! JULY 31 2009
A group of folks from St. John’s Lutheran Church in Lanesville is putting together a fund-raiser to help offset some of CJ’s medical expenses. I don’t have a complete list of activities, but there will be something for everyone. I do know they will be serving a spaghetti supper and are planning a euchre tournament, corn-hole tournament, a dessert auction and something for the little ones. I’ll provide a full list of activities later. I just wanted to make sure everyone knows the date and the location - July 31, 2009 at St. John’s.
Tuesday, May 5, 2009
Homebound and Lock-down
CJ is now home from his latest visit to the clinic. Today's visit was mixed with good and bad. No lumbar punctures, no bone marrow tests, and no accessing his port; but he did have to endure two shots to his thighs - these are the PEG shots and occur only occasionally throughout the treatment plan. All-in-all, it was a fairly short visit and the shots weren't too bad.
His counts however, are down to 900 - under the 1,000 count the doctors prefer. As a result, he is on "lock-down" and can't leave the house. Sheree must also be very cautious to limit his contact with visitors - especially during this flu season. It could be devastating for CJ to be exposed to a serious flu while his counts are so low. I'm sure everyone knows how much CJ loves your visits, but for now, please check with Sheree before "stopping by".
The decline in his ANC to 900 is not unexpected. The doctors advised that this would probably happen as a result of the chemo pill he takes daily. In addition, the PEG shots may cause his counts to drop further. He is due to return to the clinic next Tuesday to begin his next phase of treatment. All will depend though on his ANC. If his counts are below 750 next week they will delay the start of his next phase until his counts come back up.
Otherwise, CJ is in good spirits. He has been dealing with a little nausea, but he isn't a great sport about taking the medicine that will help control it. And it can be very difficult to reason with a 4 year-old.
Sometimes it's hard to believe he is fighting a life-threatening illness. He is so resilient. I am constantly amazed by what this little guy just takes in stride. He is truly our little hero!
His counts however, are down to 900 - under the 1,000 count the doctors prefer. As a result, he is on "lock-down" and can't leave the house. Sheree must also be very cautious to limit his contact with visitors - especially during this flu season. It could be devastating for CJ to be exposed to a serious flu while his counts are so low. I'm sure everyone knows how much CJ loves your visits, but for now, please check with Sheree before "stopping by".
The decline in his ANC to 900 is not unexpected. The doctors advised that this would probably happen as a result of the chemo pill he takes daily. In addition, the PEG shots may cause his counts to drop further. He is due to return to the clinic next Tuesday to begin his next phase of treatment. All will depend though on his ANC. If his counts are below 750 next week they will delay the start of his next phase until his counts come back up.
Otherwise, CJ is in good spirits. He has been dealing with a little nausea, but he isn't a great sport about taking the medicine that will help control it. And it can be very difficult to reason with a 4 year-old.
Sometimes it's hard to believe he is fighting a life-threatening illness. He is so resilient. I am constantly amazed by what this little guy just takes in stride. He is truly our little hero!
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