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!
Tuesday, April 28, 2009
Second Phase of Treatment
Posted by Mommy:
The last two weeks have not been very exciting, but that is how we like it. As for CJ’s medical status, he is doing pretty well. We started the second phase of treatment which consists of a chemo pill nightly, an antibiotic three days a week, a daily antiviral medicine daily and weekly lumbar puncture (the sleepy test as CJ calls it) with chemo to replace the spinal fluid. This makes our weekly trips to the clinic last about five to six hours. He also has to get a couple of PEG shots, which go right into the muscle on his thighs. These are not very pleasant, but quick to do. CJ’s legs are sore after so he doesn’t like them, but he doesn’t like any shots.
CJ’s attitude and appetite has changed dramatically without the steroids. He is up and playing a lot more, and eating a lot less. He has lost about six of the sixteen pounds he put on. Most of the swelling has gone away from his body, which makes him feel a lot better. We also found out he gets about a two month break before steroids begin again, and then they still won’t be for as long as it was before. His anc number has dropped a little. It started at 1600, to 1500 the following week, and 1400 last week. This is to be expected with the chemo pill. The doctors are still happy with his scores. Anything over a 1000 and he doesn’t have to be on complete lock down. We go back to the doctor on Tuesday the 28th for the final lumbar puncture during this phase. We will have the PEG shots the following week, and the second phase will be finished.
The weekly doctor trips have become easier. CJ still doesn’t like the finger poke to get the blood test done, or getting his port accessed, but it is not as big of a fight as before. I am hoping one day soon the fight will end and he will just accept it.
We did have a little draw back last Friday and spent the day at the hospital. CJ was vomiting and had diarrhea for a couple of days in a row. I wasn’t sure if it was his medicine or not, since he hadn’t gotten sick before but we did change medicines. When I called the clinic they told me to come on in to get CJ checked out. Once we got to the clinic we were sent to the hospital for IV fluids and blood tests. We found out he was getting dehydrated and had a stomach bug. He is feeling a lot better now.
As for our home life, we are trying to get a routine down, but it has not been easy. Some days CJ wants a nap, and some days he doesn’t. We are trying to figure it out together. I have tried to keep a steady bed time and wake up time to help. Hopefully since it is getting warmer and his numbers stay up we can go and do things more, but it is still a day by day thing.
Note from Mammaw Kitty: Sheree has sent pictures that I will add later. I’m sorry I haven’t been doing a very good job of keeping the blog updated. This is a rough time of year for us accountants. Things will settle down a little now and I can get my focus back!
The last two weeks have not been very exciting, but that is how we like it. As for CJ’s medical status, he is doing pretty well. We started the second phase of treatment which consists of a chemo pill nightly, an antibiotic three days a week, a daily antiviral medicine daily and weekly lumbar puncture (the sleepy test as CJ calls it) with chemo to replace the spinal fluid. This makes our weekly trips to the clinic last about five to six hours. He also has to get a couple of PEG shots, which go right into the muscle on his thighs. These are not very pleasant, but quick to do. CJ’s legs are sore after so he doesn’t like them, but he doesn’t like any shots.
CJ’s attitude and appetite has changed dramatically without the steroids. He is up and playing a lot more, and eating a lot less. He has lost about six of the sixteen pounds he put on. Most of the swelling has gone away from his body, which makes him feel a lot better. We also found out he gets about a two month break before steroids begin again, and then they still won’t be for as long as it was before. His anc number has dropped a little. It started at 1600, to 1500 the following week, and 1400 last week. This is to be expected with the chemo pill. The doctors are still happy with his scores. Anything over a 1000 and he doesn’t have to be on complete lock down. We go back to the doctor on Tuesday the 28th for the final lumbar puncture during this phase. We will have the PEG shots the following week, and the second phase will be finished.
The weekly doctor trips have become easier. CJ still doesn’t like the finger poke to get the blood test done, or getting his port accessed, but it is not as big of a fight as before. I am hoping one day soon the fight will end and he will just accept it.
We did have a little draw back last Friday and spent the day at the hospital. CJ was vomiting and had diarrhea for a couple of days in a row. I wasn’t sure if it was his medicine or not, since he hadn’t gotten sick before but we did change medicines. When I called the clinic they told me to come on in to get CJ checked out. Once we got to the clinic we were sent to the hospital for IV fluids and blood tests. We found out he was getting dehydrated and had a stomach bug. He is feeling a lot better now.
As for our home life, we are trying to get a routine down, but it has not been easy. Some days CJ wants a nap, and some days he doesn’t. We are trying to figure it out together. I have tried to keep a steady bed time and wake up time to help. Hopefully since it is getting warmer and his numbers stay up we can go and do things more, but it is still a day by day thing.
Note from Mammaw Kitty: Sheree has sent pictures that I will add later. I’m sorry I haven’t been doing a very good job of keeping the blog updated. This is a rough time of year for us accountants. Things will settle down a little now and I can get my focus back!
Friday, April 10, 2009
A Post From Mommy
Well we survived the induction period. This might not sound like a big deal, but believe me, after living through this it is a big deal! We've spent almost half of the six weeks since CJ was diagnosed in the hospital with three separate stays. We've lived through the ever-changing food cravings, from grilled cheese, to corn dogs, to hash browns - then chicken nuggets, to fruit loops, to Cheetos, to fried clams, and ending with fried shrimp with tails.
Not only did CJ have ever-changing cravings, everyone knew about them. When staying in the hospital everyone who walked in the door was greeted with the cry of, “no shots”! And when he realized they didn’t have a shot he told them what he wanted to eat. These cravings didn’t end at bed time either. I don’t know how many times I got up in the middle of the night to fix CJ a bowl of cereal or get a bag of chips.
There hasn’t been a full night of sleep until this week. I have watched my skinny little guy transform into a chubby-check, swollen belly, swollen ankles, and moody little boy. It is like a pregnant woman at month nine - swollen, hungry, achy, trouble breathing and no way to get comfortable no matter how hard he tried - and moody because of it. I have been assured this is all normal and it will get better.
We had to buy new clothes since he out-grew all of his older clothes. We got a new pair of shoes that would stretch with his feet. We bought a large stroller because he is too big for me to carry and his poor little legs and feet hurt too much to walk more than ten feet. And you can forget steps! Even the three steps to get in the house are un-bearable for him.
In three weeks CJ gained 16 pounds, so no wonder he hurts. He doesn’t even look like the same child. I am told this will go away but not as fast as it came on. Since the steroids ended this week the cravings have stopped, and we have had a couple of nights that have been full of sleep. His legs are not as swollen and he even walked all the way to the mail box and back with me today. This is such a big deal. Plus the mood swings have gotten so much better. He has been laughing and playing which just makes me want to cry, since I know how much he has been through this past month. I have gotten a peak of who my child was before.
I have come to realize that working even part time from the house is just not possible right now. We are not able to plan anything. I’ve told my family not to plan anything around us. If we can come we will, but don’t count on it. Life as we knew it, is no more. This is one of the hardest things for me since I have always been a planner, and the one everyone could count on. I am a stay-at-home mom now. I never thought I would hear myself say that. I have worked my entire life and I’m here to tell you this is the hardest job I’ve ever had. And to think, this is just the beginning.
I would like to thank everyone who has helped us out this past month - everyone who has contributed to CJ’s fund, brought food, prayers, gifts for CJ and those who have helped take care of Hunter. I would like send out a special thanks to my mother-in-law Kitty for keeping up this blog and for so much help with Hunter. I’ve been able to focus on CJ since I knew Hunter was in good hands. I would also like to send out a special thanks to my sister Christy. Every time we needed something she has been there. From fried clams to clean clothes, starting CJ’s fund, and making sure everyone was informed so I didn’t have to make so many calls. We couldn’t have done this without the both of you.
Not only did CJ have ever-changing cravings, everyone knew about them. When staying in the hospital everyone who walked in the door was greeted with the cry of, “no shots”! And when he realized they didn’t have a shot he told them what he wanted to eat. These cravings didn’t end at bed time either. I don’t know how many times I got up in the middle of the night to fix CJ a bowl of cereal or get a bag of chips.
There hasn’t been a full night of sleep until this week. I have watched my skinny little guy transform into a chubby-check, swollen belly, swollen ankles, and moody little boy. It is like a pregnant woman at month nine - swollen, hungry, achy, trouble breathing and no way to get comfortable no matter how hard he tried - and moody because of it. I have been assured this is all normal and it will get better.
We had to buy new clothes since he out-grew all of his older clothes. We got a new pair of shoes that would stretch with his feet. We bought a large stroller because he is too big for me to carry and his poor little legs and feet hurt too much to walk more than ten feet. And you can forget steps! Even the three steps to get in the house are un-bearable for him.
In three weeks CJ gained 16 pounds, so no wonder he hurts. He doesn’t even look like the same child. I am told this will go away but not as fast as it came on. Since the steroids ended this week the cravings have stopped, and we have had a couple of nights that have been full of sleep. His legs are not as swollen and he even walked all the way to the mail box and back with me today. This is such a big deal. Plus the mood swings have gotten so much better. He has been laughing and playing which just makes me want to cry, since I know how much he has been through this past month. I have gotten a peak of who my child was before.
I have come to realize that working even part time from the house is just not possible right now. We are not able to plan anything. I’ve told my family not to plan anything around us. If we can come we will, but don’t count on it. Life as we knew it, is no more. This is one of the hardest things for me since I have always been a planner, and the one everyone could count on. I am a stay-at-home mom now. I never thought I would hear myself say that. I have worked my entire life and I’m here to tell you this is the hardest job I’ve ever had. And to think, this is just the beginning.
I would like to thank everyone who has helped us out this past month - everyone who has contributed to CJ’s fund, brought food, prayers, gifts for CJ and those who have helped take care of Hunter. I would like send out a special thanks to my mother-in-law Kitty for keeping up this blog and for so much help with Hunter. I’ve been able to focus on CJ since I knew Hunter was in good hands. I would also like to send out a special thanks to my sister Christy. Every time we needed something she has been there. From fried clams to clean clothes, starting CJ’s fund, and making sure everyone was informed so I didn’t have to make so many calls. We couldn’t have done this without the both of you.
Wednesday, April 8, 2009
We Have Great News!
We have the results of Monday's tests. The lumbar puncture shows no signs of blasts in CJ's spinal fluids. And the greatest news - the concentration of leukemia cells in his bone marrow are under 1%! This means that the chemo treatments have been effective and the leukemia is officially in remission. This is significant because from what we've read, the long-term prognosis is better when the patient shows this kind of response to treatment within the first 28 days. While we realize that we are still in the early stages of his 3-year treatment program, we are very excited by these results!
CJ is feeling better since he has come off of the steriods. The swelling in his legs seems to have gone down a little and he has been in a very good mood the past couple of days. He is not experiencing the constant hunger that he has experienced over the past weeks.
CJ goes back to the clinic next Tuesday for his next chemo treatment and another lumbar puncture. We will now be moving to the next phase of his treatment. We're not sure just yet what that will be, but we'll know more after Tuesday's visit with the doctors.
CJ is feeling better since he has come off of the steriods. The swelling in his legs seems to have gone down a little and he has been in a very good mood the past couple of days. He is not experiencing the constant hunger that he has experienced over the past weeks.
CJ goes back to the clinic next Tuesday for his next chemo treatment and another lumbar puncture. We will now be moving to the next phase of his treatment. We're not sure just yet what that will be, but we'll know more after Tuesday's visit with the doctors.
Tuesday, April 7, 2009
Hanging in There...
I apologize for not updating the blog before now but there just hasn't been much to report. That's a good thing, though. We like it when things are running along quietly.
CJ had a regularly scheduled trip to the clinic yesterday. He received his weekly chemo treatment, a bone marrow aspirate and a lumbar puncture. As I explained in my last post, these two tests will determine if the chemo treatments so far have the leukemia on the run. We probably won't have the results of these tests until his clinic visit next Monday. In the meantime, we're keeping our fingers crossed that everything turns out well. We want the concentration of immature white blood cells (the leukemia cells) in his bone marrow to be under 5%.
It breaks my heart to watch CJ maneuver around the house. His legs and hips ache and the weight he carries as a result of the steriods make it hard for him to breathe. He has a hard time getting comfortable in any position. I was watching him last night moving from his chair to the couch and he moved just like an old man - hunched over and unsteady on his feet. His feet are very swollen so his balance is a little off.
The doctors have taken him off of the steriods for this week. Yesterday was his 29th day of treatment. He must resume the steriod treatments on the 37th day, but we don't really know for how long this time. We know he will go on and off the steriods throughout the treatment program but we don't know the intervals and how long they will last. It may all depend on how he is responding overall.
His ANC counts were down to 1600 from last week's high of 2200. He was able to take advantage of last week's good counts and spend a little time Sunday at a Baumgart family gathering for cousin Jonathan's confirmation. (Congratulations, Jonathan! We love you and are very proud of you.)
This past Friday, several of us attended a Fillies Luncheon and Style Show, a fund raiser for the Leukemia & Lymphoma Society. Several weeks ago I received an invitation to this luncheon from a college friend of mine. She was one of the organizers and thought the company I work for might be interested in sponsoring a table. She had no idea that CJ or ViviAnne had been diagnosed with leukemia. Rather than have the company sponsor the table, several members of my family attended with me. It was a wonderful event and one that I know we will support in the future.
That's really about all we have to report today. We'll be sure to let everyone know as soon as we have test results.
Love to all of you!
CJ had a regularly scheduled trip to the clinic yesterday. He received his weekly chemo treatment, a bone marrow aspirate and a lumbar puncture. As I explained in my last post, these two tests will determine if the chemo treatments so far have the leukemia on the run. We probably won't have the results of these tests until his clinic visit next Monday. In the meantime, we're keeping our fingers crossed that everything turns out well. We want the concentration of immature white blood cells (the leukemia cells) in his bone marrow to be under 5%.
It breaks my heart to watch CJ maneuver around the house. His legs and hips ache and the weight he carries as a result of the steriods make it hard for him to breathe. He has a hard time getting comfortable in any position. I was watching him last night moving from his chair to the couch and he moved just like an old man - hunched over and unsteady on his feet. His feet are very swollen so his balance is a little off.
The doctors have taken him off of the steriods for this week. Yesterday was his 29th day of treatment. He must resume the steriod treatments on the 37th day, but we don't really know for how long this time. We know he will go on and off the steriods throughout the treatment program but we don't know the intervals and how long they will last. It may all depend on how he is responding overall.
His ANC counts were down to 1600 from last week's high of 2200. He was able to take advantage of last week's good counts and spend a little time Sunday at a Baumgart family gathering for cousin Jonathan's confirmation. (Congratulations, Jonathan! We love you and are very proud of you.)
This past Friday, several of us attended a Fillies Luncheon and Style Show, a fund raiser for the Leukemia & Lymphoma Society. Several weeks ago I received an invitation to this luncheon from a college friend of mine. She was one of the organizers and thought the company I work for might be interested in sponsoring a table. She had no idea that CJ or ViviAnne had been diagnosed with leukemia. Rather than have the company sponsor the table, several members of my family attended with me. It was a wonderful event and one that I know we will support in the future.
That's really about all we have to report today. We'll be sure to let everyone know as soon as we have test results.
Love to all of you!
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