CJ's Blog

Merry Christmas

2011-12-30T21:20:00.003-05:00

Posted by: Mommy

It has been a while since I posted last, but just remember no news is good news. We are getting ready to start the New Year, and the last year of chemo treatment. He has only 6 chemo treatments left, and 2 Spinal Taps. To someone who hasn’t lived through this the last three years this may seem like a lot. To us, we see the light at the end of the tunnel. It doesn’t seem real yet. Mid May the treatment ends. Then the shining moment in June, the blood tests to see if the cancer is gone. If all goes well by the end of June CJ could be having surgery to remove his port. We will still be under the scope for several more years to make sure it stays gone, but just through blood tests, and not taking medicines every single day. It will feel strange not having to watch the clock every night to make sure I cut CJ off from eating and drinking at a certain time before he can take his medicine. I can’t wait to be spontaneous, and just go somewhere with out having to plan out and worry when will we be eating, and have to pack medicine or hurry home.

As for right now, CJ and the family had a good Christmas, lots of family, lots of food, and lots of gifts. He even talked to Santa at school this year. You couldn’t pay him to go close to him until now. I am still not sure, but I think just wanted to get close to him so he could see if he was real or not. He also lost both of his front teeth right before Christmas, so he heard all I want for Christmas is my two front teeth, a lot. He was sick of the song by the time Christmas was over.

He went through basketball camp, which is his new love. All he wants to do is play basketball. Since he towers over most kids his age and has a little extra advantage. He can’t wait until he is old enough to play on the school team.

Everything else has been good. His counts are staying right where they are suppose to. We haven’t had any surprise in his treatment. And he is making straight A’s in school. We couldn’t ask for much more.

update

2011-10-13T23:01:00.005-04:00

Post by: Mommy

Picture #1 decades day at school

Picture #2 first day of 1st grade

CJ is back to school and doing great. He is making all A’s in school and has lots of friends. His entire class is his friends so the only time he gets in trouble is from talking too much. CJ loves to talk, and likes helping others. He also loves sports, and can keep up with the big kids with no problems. He is also growing like crazy. He is the tallest kid in his class and almost every month we go to the doctor he gets a little taller. I keep telling him he better start practicing basketball, because he is going to be 7 foot tall at the rate he is going. He just tells me he would rather play football. He has decided he wants to be a police officer when he grows up so he can protect people from bad guys. But he still wants to learn to do magic tricks also. We just let him know he can do anything he wants.

As for treatment CJ is doing great. We are on count down mode. We have until May until he is finished with treatment. We spent the day at Kosairs on Tuesday for his routine spinal tap and chemo. His ANC was 1400, right where they want it to be. He still gets a little nervous right before they sedate him, but who wouldn’t at any age. He just doesn’t want me to leave his side, then wakes up within a few minutes after they are finished and is in happy drunk mode telling me how funny I look with four eyes and two heads. He will have two more spinal taps between now and May. It hasn’t sunk in yet that there is an end in sight. I guess I am still in the protector mode. I don’t want to let my guard down or something will happen. One more winter to get through before the end, one more flu season, less than one more year. Then we have to relearn life again. We will have a new normal again as a cancer survivor. He will still be closely watched by doctors. He will still have monthly blood test for the first year, getting further apart over the next 4 years. So it just doesn’t end all at once, but a new normal. Every phase in his treatment is a new normal. We are looking forward to the new normal.

Almost a First Grader

2011-07-11T21:37:00.002-04:00

Posted by: Mommy

I have been getting behind on updating the blog lately, but always remember no news is good news. In the last couple of months CJ has finished T-ball, and graduated from Kindergarten. He received the most compassionate award in his class. The teacher said he always tries to help anyone new in the class. He did great in Kindergarten and is ready to start first grade in a couple of weeks.

CJ has also been perfecting his swimming skills, thanks to the Cates pool. He loves being outside playing every sport he can. He is debating if he wants to play soccer or basketball next. Every time I see CJ with a ball it just seems so natural. He is so talented.

Treatment the last couple months has been non-eventful. His counts are staying on the high side of normal. If he continues to respond to treatment this well his chemo will be raised again. This is not a bad thing it just means CJ is doing well. CJ is taking his treatments like a champ. I still thank God every time we go to the clinic how well CJ handles everything now. We go back next week for a spinal tap, and regular chemo

T-ball

2011-05-04T21:39:00.001-04:00

Posted by: Mommy

We have had a busy couple of months this spring. First CJ started T-ball. This will be his last year of T-ball before the next league up. CJ loves playing. It is exciting watching this little boy play with so much passion at only six years old. He doesn’t play in the dirt, or spend the game watching what everyone else is doing except the game. CJ is focused. He plays first base most of the time and does it quite well. He gets multiple outs every game, and doesn’t have any problems hitting the ball either, no T for this kid. No home runs as of yet, but they make it to the fence most of the time. He loves people coming to watch him, and always looks over at me after he does something good to make sure I am watching, as if he didn’t already know by how loud I cheer.

We also had Easter. CJ got woke up bright and early by his little brother Easter morning. Hunter was already finding eggs that the Easter Bunny hid around the house the night before since it has been raining. I am also proud of CJ for telling me about the real meaning of Easter more than once. He is funny when he tells you, saying things like, “Mommy did you know Jesus came back from the dead on Easter. He died for us then he came back and went to live with God. God is Jesus’ daddy.” This makes me feel good knowing that he pays attention at church and school.

As for his chemo treatment, CJ’s counts continue to go up. Last visit his ANC was at 3600. Since the last two months his chemo is going up the doctors have decided to raise his chemo dose. This is good news since his chemo dose has been lower than normal since his last hospital visit. We are now back to his normal dose. We have to go back to the doctor next week to make sure this chemo dose increase didn’t lower his counts too much. The way he is acting I don’t think his counts are too low. He still has lots of energy, running and playing every chance he gets. This last visit CJ also had to get a spinal tap or sleepy test as he likes to call it. Everything went well except a little nausea after it was over. CJ seems to continue to do well with getting treatment. He hasn’t thrown any fits, and has accepted the fact that if he is good chemo is a lot easier. We found out that his final chemo treatment will be in May of 2012, instead of March like we originally thought. This is just how his treatment falls. So now I am officially counting down, one more year to go.

Two years down

2011-03-05T21:45:00.000-05:00

Posted by: Mommy

As I get the kids tucked into bed my mind can’t help but think of what we were doing two years ago tonight. I have been thinking a lot about it for the last week now. Two years ago at the exact time we were sitting in the ER at Harrison County Hospital. My son who just turned 4 a little over a month before was sick. Earlier in the day I took him to the doctor for what I thought was a cold, maybe the flu at worse. We were sent for a blood test and were told to go home they would call us the next day with the results. It didn’t take until the next day, but only a little over an hour. Go to the hospital now, they said, something needs to be done tonight. This time two years ago we sit in a small room just dividing rooms with curtains, watching my 4 year old scared to death getting IVs put in his small arms, waiting for the ambulance to take us to Kosair. I never once thought my child could have cancer. Not until we were at Kosair and the doctors told me the bad news. For the next couple days it still felt unreal. This is not how it happens, people have to go through weeks of tests before they find cancer, not a couple of hours and you know. I was so scared, but could not show a single tear, I had to be brave for that little boy. I couldn’t let him see his mommy cry he was scared enough. I am still not sure how I did it.

I am not sure why this year it is bothering me so much more than last year. Maybe because we are so much closer to the end of treatment, we have an end in sight now and it just doesn’t seem real yet. Just thinking what will it is like not having to go to the doctor at least once a month. What is it like having your child get a small fever and not having to rush to the hospital? It just doesn’t seem real. You get so used to all the doctors and treatments, you are like a machine, you do what has to be done. You do what it takes to get your child better.

I just can’t help but think what CJ has been through these last two years. He has been through more pain, more treatments, and more doctors than most people have to go through in a life time. This now six year old boy has had to grow up so fast these last two years. He has had to learn that just because you don’t want to do something doesn’t mean you don’t have too. He has had to learn that life is not fair. Some other kids get to do things he just can’t, he can’t even go swimming in the lake or playing in the sand because it might make him sick. These lessons that some adults still haven’t learned, this six year old has accepted. He knows more about the body and how it works than a lot of adults. He might only aged two years much has matured so many more.

One more year to go before monthly chemo is over. One more year until he doesn’t have to take medicine every single day. One more year and he can be more like a normal child. One more year until we don’t have to spend thousands of dollars every year on doctors. One more year and we start our new normal again.

As for his treatment he is doing great. He is right where the doctors want him to be. We even spend less time than most cancer patients in the hospital. From the outside CJ is a normal kid. He goes to kindergarten; he plays t-ball in summer league, he likes sports and playing with his friends. From the outside most people would never know he has this condition. He looks nothing like the sick little boy that we took to the doctor two years ago. This six year old boy already says he wants to be a doctor when he grows up so he can help kids like him who have to have chemo. Two years down, and one more to go we are starting the count down now there is a light at the end of this long tunnel.

Crazy Month

2011-02-01T21:18:00.002-05:00

Posted by: Mommy

It has been a crazy month this last month. First we had CJ in the hospital because of fever right before Christmas. It didn’t take him long to get over that and we spent less than 24 hours in the hospital. Next, we had Christmas with everyone. Luckily CJ didn’t have to miss any of that. We had a good Christmas and New Year. CJ also had a Birthday and turned 6.

Next, CJ got another fever last week on Thursday night, and back to the hospital we went. CJ got two flu tests, one negative and one positive. They let us go home 13 hours after we arrived and then had to come back the next morning for another flu test. This test ended up being negative. But since he got a positive we had to go off the chemo pill he takes each night and take flu medicine. He is now off the flu medicine, but has to start back on his chemo pills gradually. That means we also have to go back to the doctor in two weeks to get his counts checked again.

Last, we did go to clinic today also. This is where we found out about the flu tests and chemo pill doses changing. Also his ANC is at 1100. This is on the low side, but still in the range they want to keep it in. CJ was very brave during chemo, we are very proud of him. After chemo we went to Kosair for his Spinal Tap. The only problem was the chemo floor 7 West the in-patient part was overflowing with patients, so they turned 7 East into an in-patient overflow area. That meant we had to go to the 8th floor to get the LP done. The nurses and staff at the 8th floor were not used to us who this is just routine, so it seemed we were telling them how to do things. This means it took a little longer than usual, but we got through it, and CJ is feeling good and in a good mood. We are hoping next month is less eventful.

home

2010-12-21T18:25:00.002-05:00

Posted by Mommy

Just wanted everyone to know we did make it home on Monday night. CJ has a cold, nothing more serious. He is still feeling tired and trying to get over it, but not sick enough to need the hospital. We might have to stay home through Christmas, but better at home than in the hospital.

quick update

2010-12-19T18:14:00.003-05:00

Posted by Mommy

Just a quick update, CJ is in the hospital. He is running a fever and anytime he gets a fever we go to the hospital. We don't have any information as of yet, but hoping it is just a cold and we won't be in here more than a couple of days. We won't know anything for sure we just got to wait and see how CJ reacts, when he gets the fever down and how long he can keep it down. Just send prayers for a speeding recovery.

no news is good news

2010-09-27T21:27:00.005-04:00

It’s been a couple of months since I have update, but just remember no news is good news. CJ’s last couple of clinic appointments have gone well. The only changes that have been made is that one of CJ’s chemo pills the dose was increased. The reason for this is that he grew an inch in a month. He has tolerated the change just fine with no side effects.

CJ has made it through his first full year of maintenance without any hospital stays. During his treatment he has six months of intense chemo, two and half years of monthly chemo through his port, along with daily medicines during maintenance, and then five years of observation, before he is considered cancer free.

At home CJ has started kindergarten. He really likes school and his new teacher. He has been learning new words every week, and reading more and more. He loves to learn new things, and even likes doing homework.

We also got to use CJ’s zoo passes that he got from being good at clinic. Both he and his little brother loved the zoo. CJ says his favorite animal was the giraffe. It took so long to go since we were waiting for it to cool off before we went. We got to see the monkeys playing, the lion roared for us, and even the gorilla posed for a picture. It was a good day.

A good day

2010-07-22T14:47:00.000-04:00

Posted by: Mommy

CJ’s monthly chemo was on Tuesday. His ANC was 1700, just about perfect. The rest of his numbers were pretty good also. After last month’s melt down at clinic I have been talking to CJ a lot about chemo and why we have to do it. I have been doing my best to get through to him that sometimes we have to do things even if we don’t want to, and that is no reason to throw a fit. I also explained to him how much easier it is when he is good at chemo and holds still. After a month of talking we got to go see if it paid off. CJ was in a good mood on chemo day, he had no problems with his blood test, or the doctor giving him his check up, but this is pretty normal. Then the nurse came in to give him chemo, and brought help just in case. CJ was the perfect angel. He even talked and joked with them the whole time. One of the nurses was asking him about the zoo, and if he knew they had some dinosaurs at the zoo now. CJ looked at her funny and as serious as he could and told her she had to be wrong because dinosaurs are extinct. After chemo was finished the nurse went and got him free zoo passes for being so good, so he could see the dinosaurs. I am very proud of CJ, and hope this will be the new norm. After it was finished he told me it just hurts a little, but he is tough. I tried to tell him if he used the magic cream they gave him it wouldn’t hurt at all. He said he was tough and he didn’t need it. He has never like the magic cream, so we let him go without as long as he wants to.

Next week CJ starts kindergarten. He is very excited about it, and asks me everyday how many more days until he gets to go to school everyday. CJ has always loved school, and loves to learn. We drive down the road and play games where I give him a letter and he tells me words that start with that letter, (usually animals). He also wants to know how words are spelled, so far I am able to tell him, I just hope he doesn’t get to the hard words soon, since I am terrible speller.

take the good with the bad

2010-07-01T09:59:00.001-04:00

Posted by Mommy:

CJ had his monthly chemo on the 22nd of June. It started out very good. He was in a good mood, had no issues with the doctor, or the finger poke. He was just talking and playing the entire time. His ANC was 1900, which you can’t get better than that. It is not too high that the chemo is not working, and it is not too low where he is at risk of an infection. I was very happy with this since the week before we had to go to our family doctor because CJ’s allergies have been acting up. His eyes were getting yucky and needed some drops to clear them up. Like I said everything was going good. That is until we get to the chemo room. As soon as we walked into the chemo room, which is a big room with several big reclining chairs, toys, TV’s, and lots of fun looking things, CJ decided he wanted to go home. To bad we hadn’t got the chemo done yet. After three times cleaning his port area, and two nurses and myself making him hold still we finished chemo. The normally easy thing that doesn’t take 5 minutes took 20 minutes. We left with both me and CJ upset. All he would tell me is he didn’t want to get chemo today. I tried to explain that sometimes we have to do things we don’t want to do, I know I didn’t want to help two nurses hold my son down to put these chemicals into his body that I know makes him feel bad for the next couple of days, but we have to. By the time we got home he was over it, and playing just as nothing happened. I know it can be a good thing that CJ is very strong willed and stands up for what he wants, but some days I wish he would just go with the flow, it would be so much less stressful on both of us.

My son the flirt

2010-05-27T19:53:00.003-04:00

Posted by Mommy

CJ went the clinic this past Tuesday for his monthly chemo. This month he also had to get a spinal tap or sleepy test as CJ calls it. Chemo was a little rough this month. CJ got into his head he didn’t want chemo and there was no changing his mind. His ANC was 2300, which is a little high, but not high enough to do anything such as raise his chemo dose again.

After an emotional chemo we took the long walk across the pedway to Kosair. We get up to OMO on the 7th floor with no waiting. That is always good. Sometimes there could be up to a couple hours of waiting with a child that can’t eat or drink. But this time we got right in and with CJ still a little mad about chemo that was a very good thing. Then our nurse Nikki walked in. This nurse was very petite and pretty. CJ became an instant flirt. The normal process of getting CJ hooked up to the monitors is usually a pain at best. This time he was asking to help the nurse in any way he could. Not a single bad act or mean word came out of CJ’s mouth. He was brave the entire time, and acting as if he is the perfect angel every parent wants. So I decided that we need to keep Nikki, and send her to the clinic during CJ’s chemo days. Now if I could just talk her into it.

Medals 4 Mettles

2010-05-27T19:50:00.003-04:00

Posted by Mommy

CJ was lucky enough to participate in the Medals 4 Mettles program. This is a program that has people volunteer the run marathons and mini marathons and then give their medals to people who have struggled with medical problems. It is done all over the US, but in Louisville several dozen medical students from U of L ran in the derby mini marathon, and gave their medals for participating to the cancer patients at Kosair.

CJ’s medical student’s name is Sam. He was very nice and we believe he will make a very good doctor. We want to thank him for running thirteen miles in the rain, to finish the mini marathon just so CJ could get a medal.

counts check

2010-04-15T21:50:00.002-04:00

Posted by Mommy

We took CJ back to the clinic on Tuesday to get his counts checked. They wanted to make sure that they didn't adjust his chemo too much during the last visit. His ANC was at 1500. This is back down where they want it, and hopefully we won't have yoyo counts again.

CJ started his t-ball games last weekend. He is loving t-ball. All he wants to do is practice baseball. He wont stop until you make him, no matter how long he is playing. I love seeing him enjoying something so much. He had a game tonight and hit the ball on the first swing both times up to bat. He also caught a ball on one bounce and go a couple more on the roll.

good day at clinic

2010-04-06T21:18:00.000-04:00

Posted by Mommy:

CJ had a clinic appointment on the 30th. During this appointment CJ’s ANC was at 1600, this is back down to where they want them, but since his counts have been going up and down instead of staying consistent the doctors changed his chemo dose. They did this for a couple of reasons. First CJ’s counts have been going up and down since the beginning of the year. Next, CJ has grown since he has got to the maintenance stage. He has grown 3 inches and 5 pounds in the last six months. We have to go back on April 13th the check his counts again to make sure they didn’t adjust them too much or not enough. CJ did do well at clinic getting his chemo this time. After a little talking into it, he just laid on the bed and held my hands and let them do it. He found out how much faster it was and didn’t hurt. We still had a few tears from nerves, but other than that he did very well.

CJ has started t-ball practice and has his first game this weekend. He has been practicing most of the last month and had a practice game last night. You have to love t-ball watching all the 4-6 year old kids learning something new. Most are looking around, playing in the dirt, setting in the grass, but not CJ. CJ pays close attention to everything that goes on. If the ball goes into the half of the field he is in, he is running after it. His favorite part is batting. He is pretty good at it too. All he wants to do anymore is practice t-ball. He gets really excited about going to practice, and wants everyone to come watch him. We went to get his baseball pants and socks, and can’t wait until he gets to wear his black pants and purple socks. I will post pictures after his games.

Year one down

2010-03-19T21:30:00.001-04:00

Posted by: Mommy

We had a big day on our last chemo day. First we had CJ’s normal chemo, and then his sleepy test, (spinal tap). First at clinic CJ’s counts were 3500. This may seem good, but not for the maintenance stage. During maintenance the goal is to keep CJ’s ANC between 1000 and 2000. This is ideal because it is high enough that the risk of infection is not extremely high, but it is low enough that the doctors know the chemo is working. If CJ’s counts stay high for a couple of months in a row they will increase his chemo. CJ did well at his chemo and sleepy test, no big fits were thrown. We had to share the big room at OCO this time, and I think the fact that CJ knew another little boy was on the other side of a curtain getting ready for the same thing made him want to be brave. We had a week of steroids after the chemo, which is usually a bad week, but this month wasn’t as bad as usual. I know CJ does better the more he gets to get out of the house and now it is getting warmer he gets to play outside more.

Another reason that this was a big week was because March 6th was the one year anniversary of CJ’s diagnoses. It is hard to believe that it has been a year since that awful night that changed our lives forever. It is also amazing how far CJ has come since that long night. You look at him now and he doesn’t seem sick most of the time. Just looking at him from that bald heading little boy with the cubby checks, to his now still the tallest kid in his class, with his thin frame and full head of hair, he looks perfectly normal. We don’t have people see him and ask what is wrong. We did our best this entire time to treat him as much like a normal little boy as possible. We knew that one day he is going to get over this illness and be a normal boy just like everyone else, and we didn’t want him to feel any other way. CJ is strong and brave and he is my hero for being so tough. I know it has been hard on him, it has been hard on the entire family. But now the rough part is over. We made it through. Now he is playing t-ball with all the other little boys and girls his age, and I feel so happy to know that he is winning his fight.

CJ is 5!

2010-02-04T11:45:00.005-05:00

Posted by Mommy:

Another month passes and another chemo appointment comes and goes. CJ is right on track with his treatment. His ANC was 1900 this past month so they didn’t have to adjust his medicine as they thought they might last month. He is responding just like he is suppose to. We had a rough time at the clinic this time. CJ got in his head that he didn’t want chemo, and fought tooth and nail to stop it. After all said and done he got his chemo and I got a fat lip from a head butt to try to stop me from holding him still. I had a few flash backs to the beginning of his treatment when every visit was like that. I guess I should be thankful that these bad reactions are few and far between anymore.

On a good note CJ turned 5 years old this last month. With the bad weather we didn’t do anything big, but had cake and ice cream with a few presents. When I asked CJ what kind of cake he wanted for his birthday all I got was a square one. After a little more questioning I got him to tell me he would like a square cake with balloons on it and the number 5. So that is what he got, plus he got to help decorate it. He loved helping me with the balloons and his little brother was doing everything he could to get a bite of cake before it was time. CJ also had cupcakes at school on his birthday, and got to help decorate those too. It is nice to see him take pride in doing things like that, and he got to tell all of his class he made the cupcakes.

With the snow we had also comes sledding. CJ got to go sledding a little and play in the snow. Him and his little brother had a lot of fun throwing snowballs and sliding down the hill. CJ also taught Hunter to make a snow angel. Not sure Hunter got the whole concept, but lying in snow is a fun thing.

CJ also got signed up to play t-ball. Now all we have to do is wait until it starts. He is very excited about playing. He tells me all the sports he wants to play when he gets bigger (which is almost every sport out there), and wants to know when he can play them. So the fact that he is starting on his list is a big step for him. I think his family is more excited than he is.

rough start to a new year

2010-01-10T09:47:00.001-05:00

Posted by: Mommy

We have had a busy month this past month. First let’s start with CJ clinic appointment this past week. We got mostly good news. First CJ’s ANC was 2500. This is a little higher than they like it. But since CJ had 5 weeks in between his chemo they are not worried. If his counts stay high the doctors will adjust his chemo pills. But this month they left it the same to make sure it is not just the extra time. The good news is CJ can play T-ball this spring. He is very excited about it, along with the rest of the family. Everything we can do to make his life more like a normal kid is good.

Last week has been a rough week for our family. It started with CJ getting the stomach bug that is going around. The doctor’s at the clinic said almost everyone that has been through the clinic has had it. It is nearly impossible to avoid it. After CJ got it on New Years Day he spread it to the rest of the family. The funny part is we try so hard to keep illnesses away from CJ, and he is the one giving it to everyone else. So after getting over the bug, CJ then had to have his chemo followed by steroid week. Needless to say it has been a fun week.

Before all this happened we had Christmas. CJ was in a Christmas program at school. He had a couple of songs to sing with his class and did very good. He stood up proud and sang them both. He also had Christmas parties with his class.

Then we had several family Christmas parties to go to, including Santa coming at the house. CJ was very excited this year. He woke up around 4 am and came to tell me that Santa came. I let him know that it was too early to open presents yet and tried to get him to crawl in bed with me for a couple of hours until his little brother woke up. This didn’t happen. So me and him got up, went into the living room and watched cartoons. I was lying on the couch half asleep, and CJ kept coming over to me whispering what he was seeing in the presents and the stockings. By 5 am when Hunter woke up CJ knew what a couple of the presents were (the ones in bags) and what was in everyone’s stockings. Then when Greg brought Hunter in CJ started telling us who got what. CJ got lots of presents, but when asked at the clinic if he got anything good, he said no. So I guess Santa shouldn’t try so hard next year.

In a few weeks CJ will turn 5 years old. He seems more excited about this than he was about Christmas. I can’t say I blame him, being 4 years old for him was hard. Everything started shortly after his birthday last year. So here is to looking forward to CJ being 5. It is truly going to be a good year.

Happy Holidays

2009-12-02T13:14:00.001-05:00

Posted by: Mommy

We went to our monthly clinic visit on Tuesday this week. Everything went fine. CJ’s ANC is still at 1700, and all his other counts are good too. As long as his counts stay in this range they will not have to do anything extra or adjust any medicines during maintenance. We did have to go over to Kosair after the clinic appointment to get a sleepy test (spinal tap). These will happen every three months during maintenance to check to make sure no cancer cells go to the brain. They also give him chemo in the spine to replace the spinal fluid they take. CJ did as good as I have ever seen during the sleepy test. We did have some tears from nerves, but no fits. This is a step up from his norm. We did start steroids Tuesday, which is never fun, but last time was not bad at all, since CJ wasn’t stuck at home the entire time. We are all hoping that it goes as smooth this time around. Plus with all the holidays coming up we don’t have to go to clinic again until the beginning of January, Yeah!!

We had a very good Thanksgiving. CJ got to get out and take day trips to see most of his grandparents and great grandparents over a four-day stretch. He got to play with lots of cousins and had a good time; with lots of good food everywhere he went.

Everything has been going good, CJ is just his normal self anymore, except the fact his hair came in quite a bit lighter than before. That doesn’t bother him one bit. Just looking at him you would never think this is a kid with cancer. I thank God every day that CJ has done so well with his treatment. I also thank God for all the support all our family and friends have showed us through this year. Happy Holidays to everyone, and thank you for all you have done for our family.

trick or treat

2009-11-03T20:58:00.003-05:00

Posted by: Mommy

We went back to the clinic this morning. CJ was in a good mood so everything went well, with our appointments being 4 weeks apart CJ doesn’t mind going as much. We got all good news from the doctor. All of his counts are in a good range, and his ANC is 1700, which is right where they want it. This means the chemo and all the medicines are working just like they are suppose to. We do start steroids again today for the next five days. This will be a test since it will be the first time he is on steroids during school, since it was fall break last time. He did really well on steroids last time, with less mood swings and food cravings, so I am hoping it goes as well this month.

CJ is doing great with preschool, everyone is so glad he is back. CJ has even got to take a couple of field trips. His class went to Deere Farms, which is just next door to the school. They got to go to the corn maze and pick pumpkins. Next they got to go to the firehouse in Georgetown to see the fire trucks. This is nothing new to CJ, since Greg is on the fire department in New Middletown, but he had fun none the less. I am sure he told everyone how the fire trucks worked.

CJ also got to go trick or treating twice this year. First on the Wednesday before we went to Trick or Trunk at St. John’s where CJ got to play with his friends and get quite a bit of candy in a little amount of time. For this one he was the red power ranger. Then he dressed up as wolverine and went trick or treating with his dad on Halloween night. It is great to see him get to go out and do things like any other four year old does. Not long ago I was wondering if he was ever going to get to act like a normal kid again. Now everyone he is around just treats him like a normal kid. He is even starting to look like his old self, with holding on to his normal weight, and getting his hair back.

a good day

2009-10-06T22:14:00.001-04:00

Posted by Mommy

Today was the first time in a month that we had chemo through CJ’s port. Not having anything done in a month I was hoping that CJ would take it well, with little kicking and screaming. We have had problems from the beginning with CJ getting his port accessed. When I see kids at the clinic kicking and screaming through everything it makes me remember our early days of taking four people to hold down this little sick boy to get his port accessed. You just wondered how this little weak child could keep four grown people from holding him still. How we dreaded every treatment because of the pain and stress that CJ was being put through. Today at clinic was a good day. CJ sat in the chair and got his port accessed and his chemo all by himself for the first time today. I feel that we have finally hit a milestone. I know being in maintenance itself is a big milestone in CJ’s treatment, but the fact that he didn’t kick or scream he just sat still and let the nurse do what she had to do. He wasn’t mad after it was over like our normal clinic visit. CJ has grown up so much in the last seven months it is hard to believe it is the same little boy, and that he is only four years old.

We got all good news at the clinic today. CJ’s ANC is 2000. At this time in his treatment that is a very good number. The doctors want to keep his ANC low enough that they know the chemo is working, but high enough that he won’t get sick at the drop of a hat. According to the doctors CJ looks great. He does have to start steroids today which we never like, but know it is a necessary evil. He also keeps up with his normal chemo pills nightly, and weekly. But the next trip to the clinic isn’t for 4 more weeks.

The last two weeks have also been good. CJ has been going to preschool three half days a week. He loves being back, and hasn’t had any problems with the time he has missed. Ever since CJ was a baby he has been a very smart little boy. He knew lots of things before most kids his age. He was speaking in complete sentences when most kids barely spoke a few words. Since we did do lots a school work while stuck at home he is right along with the rest of his class. I was a little worried about being on steroids and going to school, but it just worked out that chemo week is on CJ’s fall break. Everything else is going good.

Preschool starts

2009-09-22T20:54:00.000-04:00

Posted by Mommy

We went to the clinic today to get CJ’s counts checked to make sure they didn’t need to adjust his chemo pill doses. After arrive at 8:15 am, (a half hour early) we found the clinic empty. Everyone scheduled at 8 am was late. Being the first ones in they were very happy to see someone could make it one time, well early. The entire appointment took about 15 minutes. CJ’s ANC was at 1100, which is just where they are trying to keep it. Also since it is over 1000 we got to okay to start back at preschool.

After the clinic we also got the okay to get a dentist check up. The rules of a dental appointment while being treated for ALL, are first you have to be in maintenance stage. Next, you have to have your appointment within one week of the last blood test so the dental appointment can be approved, and last you have to take another antibiotic one hour before your appointment. After the clinic appointment I called our family dentist and told them I need an appointment within the week or after then next clinic appointment. They just happened to have an appointment today. CJ was very brave going to the dentist for his first cleaning. He talked to the hygienist the entire time asking what everything was, and how it worked. She explained to CJ what she was going to do step by step. One of the first steps was to count his teeth. Without missing a beat he told her you don’t have to count them I have 20. She looked at him and said that is right you should have 20. He just told her I know, as if he is an expert. He set very still and let her clean his teeth. The dentist came in to look at them and told us he has perfect teeth. They are straight, clean, and perfectly spaced. CJ was very happy to leave with a new tooth brush, dinosaur floss, tooth paste, and Scooby Doo stickers. He even got a compliment on his hair due.

Speaking of CJ’s hair, in the last couple of weeks he has went to bald to looking like he just got a buzz cut. His eyebrows are back in and so are his eyelashes, as thick as ever. We have offered to shave his head just so he wouldn’t look like everyone else at preschool, but he told us that his head might get cold if he does and he doesn’t like wearing a hat. CJ is very quick witted, especially for a four year old. You never know what he is going to come up with, and he doesn’t forget a time.

Well preschool starts tomorrow, and the entire family is excited. I will be starting back part time at work tomorrow also. We are looking forward to finding our new normal.

Maintenance is here!!

2009-09-10T22:38:00.001-04:00

Posted by: Mommy

Maintenance has finally arrived!! We went to the clinic on Tuesday to make it official, and with CJ’s ANC at only 900 it was close if we got to start or not. CJ did the best he has ever done at getting his port accessed. He fussed a little, but no kicking and screaming, that is a big accomplishment. He got his chemo and off to the hospital we go with five new prescriptions. He had to get a sleepy test (spinal tap) right after the clinic visit, this didn’t go as well. Just like the ones before he is fine until it is time to hook up the monitor. That is when all hell breaks loose. Along with a couple nurses we have to hold him down to get the monitor on him, which are just stickers. Then it is a quick slip of the sedative to relax him. It only takes a few moments and he is out of it. The doctor does the spinal tap in less than 10 minutes, and within another 10 minutes he is what I like to call a happy drunk. He is checking out his hands, since he is seeing double, and finds it funny. The nurses can’t believe that this is the same child that was kicking and screaming a few minutes before.

We don’t go back to the clinic for two weeks and that will be to check his counts. If they are in the right range everything stays the same. If they are too high or low his chemo pills will be adjusted. We are going through steroids right now for five days after he gets chemo in the clinic. They have his steroids in pill form now, which has cut back on fights about taking medicines, since CJ is becoming a pro at swallowing pills. This is a good thing considering he will have to take at least one pill every night for the next two years. The steroids are no fun as usual. CJ’s moody; no sleeping, tired behavior is in full swing. He is not having the hungry spells, but this might still come. I am hoping since he is only on the steroids for five days this won’t happen.

Now that we are in maintenance as long as CJ’s counts stay above 1000 he can go back to preschool. He is really looking forward to going back to school. I am also looking forward to this, so I can go back to work at least part time. We can finally find our new normal. CJ’s hair is coming back in which will make normal easier. Right now he has little soft peach fuzz all over his head, and dark eye brows coming in. From what I can tell his hair is going to be straight and dark, just as it fell out. He never really had a problem with not having any hair, so it might not make a big difference. The best thing is he won’t have to wear a hat every time he walks out the door. He is not a hat person. Plus looking like a normal kid will be great for school.

good news at last

2009-08-31T21:34:00.000-04:00

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.

Last week of delayed intensification

2009-08-25T20:56:00.001-04:00

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.

Almost there

2009-08-18T21:51:00.001-04:00

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.

Start of a very long week

2009-08-13T08:01:00.002-04:00

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.

Special Thanks

2009-08-01T18:56:00.001-04:00

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.

Week two, better than the last

2009-07-27T22:13:00.002-04:00

Posted by Mommy

We made it through week two of this hard phase. The good news is this week was much better than the first. CJ’s mood, tiredness, and overall feeling bad left only a day and a half after being off the steroids. The chemo didn’t make him feel as bad this last week either. We got to get out of the house with his ANC up. We didn’t do a lot, but he did get to visit a few people that he hasn’t got to see in a while. Getting out of the house did put him in a good mood, and made him very talkative.

This week we started back up on the steroids for the next seven days. He also got the same chemo treatment that he has received the last two weeks. The bad part about this doctor visit was CJ’s ANC dropped all the way down to 600, which is barely enough to receive his chemo at all. The doctors say this is normal and means everything is working correctly. The combinations of being off the steroids for a week and the chemo made them drop. I asked if his counts would come back up this week being back on the steroids but it is a toss up. With three weeks in a row of this chemo treatment it usually makes his counts stay down for a while, that is why he doesn’t get any treatment next week, to let his counts come back up before the next round.

The next round will consists of chemo four days in a row, then off three days and chemo four more days in a row along with starting to take a chemo pill daily. Most kids get delayed at this point because their counts don’t come up within the two weeks, so to expect that.

Just a reminder that CJ’s fundraiser at St. John’s Church is this Friday starting at 5 pm; it will be a lot of fun and a nice night out with fun stuff for the entire family, so come and join us in supporting CJ. Thanks in advance for everyone who can come.

We survived week one.

2009-07-20T15:55:00.003-04:00

Posted by Mommy

Week one of delayed intensification is behind us. It was not a pleasant week at all. The new chemo, which looks like red kool aid takes all the energy out of CJ; and the steroids make you wonder if they do more harm than good. The steroids not only effect CJ’s moods and eating habits, but just make his poor little body hurt. He wasn’t as hungry this week as he was the first time we were on them, but he was only on them for a week. They do one good thing and that is make CJ’s ANC go up. It was 2700 at the clinic today which is more than it has been since he has been diagnosed. That means we can get out and go places, but when your body hurts and everything makes you mad it is best to stay close to home.

Last week we had two doctor’s visits on Monday for chemo and a sleepy test, then on Thursday for more mean pig shots, or Peg shots. The Peg shots were very hard on CJ this time; thank God they were the last ones he gets. He cried from the time we left the clinic until the shots were done, about an hour and a half. All he would say is he wants to go home now. Someone from child life came in to try to cheer CJ up with toys and to play, but he wouldn’t talk to her and barely looked at the toys she brought. After the shots were done he finally stopped crying even though we had to wait another hour before we got to go home, just to make sure he didn’t have a reaction to them. His legs were sore from the shots this time, and they usually don’t bother him.

We got to get out of the house a little this past week. CJ visited his dad, and went to a Yard Sale with his Mama Amy. He also got to visit Pap’s Chris and ride a horse around the barn yard. I am not sure who had a better time CJ or baby brother Hunter.

This week CJ is off the steroids but got more of the kool aid chemo. At the clinic today I was having flash backs of the first month of treatment. CJ was not feeling very good, which makes him clingy, and emotional. Everything from getting his blood pressure to getting his port accessed was a fight. I was hoping we were over this part but the steroids bring out the worst in CJ. The clinic being extra slow today didn’t help. We were there for three hours, which made CJ very impatient. When the doctor came in to talk to us, two hours into the visit, CJ asked her if they forgot about him or if they are just slow pokes today. All I could say is he has been on steroids for a week. We are hoping CJ will feel better this week being off the steroids, but his counts are likely to come back down without them.

delayed intensification

2009-07-13T20:53:00.003-04:00

Posted by: Mommy

Today was the first day of the dreaded delayed intensification phase. I say dreaded because there are several different types of chemo, Peg shots, steroids, and spinal taps over the next two months. Some weeks we might have to go to the clinic up to four times. Sometimes the chemo will take over an hour not counting the clinic appointment that usually last around two hours without chemo. Plus being back on steroids we get to face the weight gain, mood swings, and 24 hour a day food cravings. Plus CJ has to learn to take pills, and will have to start taking one every night until the end of his treatment.

CJ had to have an ANC of 750 to even start this phase and he barely made it at 800. He did really well today until it was time to get his port accessed. He did better than usual but he still has problems getting it accessed. Then after the chemo we went to Kosair for a spinal tap, or sleepy test. CJ was so upset by the time he got his sleepy test that they had to sedate him before he was completely hooked up to all the machines. They have learned not to fight it, since he doesn’t have any problem with sedation and was fully checked out at the clinic a half hour earlier. He was in a much better mood when he woke up, and didn’t get sick at all unlike the last time he had a sleepy test.

We came home and CJ was hungry. It is not constant yet, but just give it a couple of days. We go back on Thursday this week for Peg shots, or bad pig shots. This is another thing CJ hates. Then back to the clinic next Monday for more chemo. It is going to be a hard couple of months, and with his counts as low as they have been it looks like we will still be home bound for awhile. We are just a week short of being stuck for two months straight, minus a couple of days in the middle, of being stuck at home. But to look on the bright side it is much better to be stuck at home than stuck in the hospital.

CJ is having his fundraiser at the end of this month at St. John’s Church. Anyone who can come we will really appreciate it. There is more info about the fundraiser on the side of the blog page.

Interim Maintenance finished

2009-06-30T07:31:00.002-04:00

Posted by Mommy:

Interim maintenance phase of CJ’s treatment is now finished. Today was his last dose of methotrexate, or energy juice as CJ calls it, through his port. His anc was just under 1000 today. Since it is up from last week Dr. Raj decided to give CJ a little bigger dose of chemo today. He also let us know that his counts will come down from this, so for the next two weeks at least we are still home bound. We have to go back to the clinic next week for a count check just to make sure the chemo didn’t bring CJ’s counts too much. The next phase will start after his counts come back up enough to receive chemo again; the doctors are hoping two weeks.

As for the holiday weekend, we will be home still. The silver lining to this dark cloud is that we can see Corydon’s fireworks from our front yard. We just can’t have our party this year, because of CJ’s counts this low. Hopefully next year will be better, when we are settled into a more normal life. Well, at least we will be into our new normal knowing that our lives will never be same as they were before cancer. I am sure everyone knows that life can change in a second and never be the same again. Sometimes it is good, and sometimes it is bad, but life is what you make of it. We are bound and determined to make this into a good thing. I just I to keep telling myself it is all about attitude. After all the only disability in life is a bad attitude.

Freedom short lived

2009-06-24T22:48:00.002-04:00

Posted by Mommy:

We had five days that we didn’t have to be stuck in the house this last week. CJ got to get out of the house and go swimming, and spend some time with his dad at his house. We didn’t do anything big, even though we spent almost an entire month stuck at home. Well I guess we missed out because when CJ went to the clinic today his ANC is back down to 800. According to the doctor this is normal, and it means that the chemo is doing its job. His counts are going to go up and down during his treatment and not to worry, but just take the precautions they set when his counts are in this range, which means staying at home. CJ can go outside and play with his counts where they are right now he just has to limit it, and only do it at home. We can’t take the chance of catching something from some where else.

The clinic visit today was a fast one. Anyone who has ever had to go to the clinic knows that this is unusual; a two hour visit is the norm, not the exception. Today’s visit took less than 20 minutes. This short of a visit was good and bad. First the good, we didn’t have to set and wait at the clinic. We got to go over to Kosair after a quick visit. The bad news was since we were due Peg shots today; we had to wait there for a bed. I guess they were also expecting a two hour clinic appointment also. We had to wait almost two hours before they had a bed for us. This normally is not fun, but since CJ was feeling pretty good today they let us wait in the playroom at 7 West.

CJ really got to know the playroom in March after spending most of the month there. He was very excited that he got to go back there and play while we were waiting. As soon as we walked into the playroom, CJ went for his favorite toys during our last stay at Kosair. They have a police car that has sirens and a handcuff on the front of the car that shots out and grabs stuff. He played basketball for a good 30 minutes of our wait, and we also played games and even pretend cooked some lunch.

After our wait in the playroom we went to our room at 7 East, which upset CJ quit a bit. He knew what was coming and told the nurse and me how much he didn’t want “mean pig shots.” The best part about the Peg shots is that they are fast, and then you have to wait an hour before we could leave. By the time we left CJ had made friends with all the nurses that were around, and even left with a Thomas the Train balloon that the child life people brought by.

After the Peg shots you have to watch for soreness, a rash, and irritably. CJ on the other hand was in a good mood, without the slightest mark on him, and has run around the house and played Wii since we got back. I just wish the nurses could see CJ right after his treatments. They would all be surprised how active he gets.

Home bound no more, maybe

2009-06-19T22:36:00.003-04:00

Posted by Mommy

I am glad to say after being stuck at home, inside for almost a month now, CJ’s ANC has finally came up to 1500!! I guess they found the magic dose of chemo last time, enough to do the job, but not too much to make his counts too low in the danger zone.

We had another long day at the doctor today. We started at the clinic at 8:00 am for his regular appointment. CJ got his Vincristine though his port at clinic. Then with his port still accessed we went to Kosair for a sleepy test as CJ likes to call it or a spinal tap in more technical terms, with his Methyltrexate.

CJ seemed to be in a very good mood all morning. He wasn’t happy about getting his port accessed but accepted it, and then after he got his chemo at the clinic they gave him chemo beads. They have a long sting and lots of beads that represent different things. They include letter beads with his name, one for getting his port in, one for losing his hair, one for getting his finger poked, and one for getting chemo. From now on every time he gets anything done, such as chemo, Peg shots, or a spinal taps he gets beads to add to his chain. It kind of gives the kids something to look forward to since they have to come back so often.

CJ likes to go over to the hospital for a couple of reasons. First we park in Kosair’s garage and his gets to ride in his cart over the walk way. In CJ terms we take the long walk, but truth be known, I take the long walk while he rides in the cart. Next, every time we go register for an outpatient procedure, we go to the vending machines and he gets to pick out a drink and a snack to take with him. He loves pushing the buttons, getting the snacks out by himself, and then if change comes out he is amazed. The funniest part is that I can pack his lunch box full of snacks, but they are not good enough unless they come out of the machine, even if it is the same snack.

Finally spinal tap went fine. CJ was calmer than usual during the procedure. He woke up fine as usual; a happy drunk is the best way to describe him. The only thing they did different is not only did he get the Methyltrexate during the spinal tap, but also in his port after the spinal tap was over. After five hours at the doctor/hospital we left to go home. On the way home CJ got sick. This is the first time the chemo has made him sick, but it is also the first time he has done the Methyltrexate and Vincristine plus a spinal tap on an empty stomach. He has had a hard time keeping things down since. As for my list of job titles, puke catcher is added at least for the day. I feel so bad for the poor guy, he is finally able to leave the house and he gets sick. Here is hoping for a feeling good weekend, so this being sick doesn’t last.

Good News, Bad News

2009-06-10T22:21:00.002-04:00

Posted by Mommy

Well we went back to the doctor today, and we had good news and bad news. First CJ’s counts were up enough to get his chemo. They again gave him two kinds that come along in this phase, Vincristine and Methyltrexate. CJ did very well at clinic. It was one of the fastest trips we had, not because of what we had to do but there just weren’t that many kids in there this morning. This is very unusual; the clinic is usually packed at all times.

The bad news is CJ’s counts were barely up enough to even get chemo today at an ANC of 540, the minimum to receive chemo is 500. They didn’t increase the dosage this time since last time it dropped his ANC count by 1100. Since his counts are so low and the chemo tends to drop them even lower we have to be extra careful. If CJ gets any fever or anything else from the long list of symptoms they give you to look out for, we go back to the doctor and very likely the hospital for a stay. That is why we are still home bound for at least ten days when we have to go back to the clinic. We still have to limit the amount of visitors, and make sure any we get have no illness.

For more good news, when we got home today, CJ was in a good mood wanting to play. The chemo doesn’t seem to affect him the way most people picture chemo in their heads. He has never gotten sick to his stomach or extremely tired because of the chemo. In fact it seems to do the opposite for CJ that is why he calls it energy juice. Most days after he gets chemo CJ wants to eat, usually more than he does on a normal day. After eating he wants to play, and play and play. A lot of times he plays the Wii, boxing is his favorite. Anyone who has played the Wii knows boxing is a very tiring game. The only bad part about all this is when CJ does get tired he crashes hard. His mood turns quickly from good to bad, and nothing short of sleep will get him out of this mood. The mood is really bad when he hasn't taken his medicine for the night yet, and the fight is on to get medicine in him before he goes to sleep.

Tonight we watched the TV show Wipeout, CJ loves to watch it and made his own “Knock out game” as he calls it in the middle of the living room. Then he would run the course several times showing me how much better he is than the people on TV. One thing is for sure CJ’s imagination has not been effected from his treatment.

Still Waiting

2009-06-05T19:34:00.003-04:00

Posted by Mommy

CJ has come long way in the last three months. When we first started going to the clinic everything upset him. He cried to get his vitals done. Now he can tell you what step is next and helps the nurse take all of them. The finger poke to find out his counts was a big deal and what he dreaded most, and he had to be held still to get it done; now he is setting in the chair by himself picking a finger to poke. When the doctors came in the room three months ago it was automatic tears. Now he jokes with them and doesn’t mind getting listened to. Even the port access is easier now. We are bragging on him on how tough and big he is getting.

CJ had an appointment on Tuesday this week. He was brave and tough for the finger poke and ready to get his straw put in when they told us his ANC is still at 400. His counts have to be at a minimum of 500 to get any chemo. Since they were too low they sent us home on lock down again and told us to come back on Friday.

Friday we went back to the clinic for try number two to get chemo. After CJ explained to the nurse how to take vitals he played in the chemo room with Vivianne who was there to get her monthly chemo treatment. CJ got to see how brave Vivianne was getting her port accessed and decided he could be even tougher. We went to get his finger poked, which he didn’t even want to sit on my lap to get it done, and picked out a finger to get poked. He even talked to the nurse the entire time she was doing it telling her how it is done. After a short wait the doctor came to the room and told us his counts are still at 400. That means we went home without chemo and have to come back next Wednesday to try again. I asked the doctor what we could do to make the counts go back up. He told me that only time could make them go up. The worse part about CJ’s counts being down and not getting his chemo is it delays his entire treatment. These delays are to be expected, but it doesn’t make them easier.

Being stuck at home for a week and a half means you have to be creative to keep little minds and hands entertained. One thing that we have done is indoor swimming. We put a small blow up kiddy pool in the living room and filled it with balls. When you remove the balls this same pool can be put over the ottoman and the coffee table to make a tunnel, add a blanket and it is a cave. We have had indoor picnics and craft time to help fill the time. We have also started doing school time during Hunter’s nap each day. We practice writing letters and numbers, CJ also loves dot-to-dot puzzles. When trying to get him to color he informed me he is just not the coloring type. CJ really enjoys school time each day. He prefers numbers over letters so we have worked on adding and subtracting, the balls from the pool are great for this, especially when baby brother comes and grabs one or two.

Friday May 22 & Tuesday, May 26 2009

2009-05-26T20:31:00.004-04:00

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.

Interim Maintenance

2009-05-15T14:18:00.001-04:00

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.

Homebound and Lock-down

2009-05-05T15:04:00.003-04:00

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!

Second Phase of Treatment

2009-04-28T10:30:00.003-04:00

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!

A Post From Mommy

2009-04-10T08:16:00.005-04:00

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.

We Have Great News!

2009-04-08T20:07:00.002-04:00

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.

Hanging in There...

2009-04-07T16:33:00.004-04:00

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!

Good News - At Last!

2009-03-30T10:45:00.006-04:00

CJ was released from the hospital yesterday afternoon. He was very happy to be home after staying 2 days in isolation (no play room, no "slushy room" and no walking the halls). The docs let him come home after several tests that showed CJ did not have a bacterial infection. This was certainly welcome news! And it gets even better...CJ's ANC when he left the hospital was over 1000!!!

I should probably explain the "slushy room". There is a room on 7 West that is actually named the Family Room. It is furnished with television, 2 computers, a stove, sink, fridge, dining room table and chairs, and comfortable couch and chairs. It also has 2 slushy machines where parents can access slushies for their kids (or themselves if they like). CJ likes hanging out in the "slushy room" because the hospital staff doesn't go in there. They won't come in the room to administer any type of treatment so CJ has come to use it as his haven.

We've told you about the mood swings the steroids cause. CJ was in a great mood last night. We stopped by to bring dinner to Greg and Sheree after they got home. And Sheree wanted to spend some time with Hunter who has been staying with us. CJ was having too much fun giving Aunt Gretchen (Greg's sister) my sugars! (We have a little thing where CJ stores his sugars for me just behind each ear. He lets me steal some from one ear, then turns his head so I can get the ones on the other side. Every now and then, he lets Gretchen have some of my sugar and I have to remind him that he makes those for me. He loves the game and he loves seeing me fight Gretchen for them.) It was so good to see him laugh and hear that giggle. We've missed that over the past few weeks.

I think things were a little easier on him at the hospital this time, too. No shots! That was a common mantra when he first arrived on Friday. By Sunday I think he finally believed us when we told him we were done with the shots - he didn't have to worry about them any more. And he told us how he is taking his medicine now without fighting Mommy every step of the way. We made a big deal out of this hoping he will continue his good behavior.

After today's chemo treatment - more good news!

Today, CJ went to the clinic for his regular chemo treatment. There was a scheduling error so he did not receive the planned lumbar puncture today, which was really a shame because he had to go 8 hours with no food or drink since they expected to sedate him for the test.

Next Monday will be his 28-day test so he will receive the lumbar puncture and a bone marrow test. These tests will tell the docs whether the chemo is effectively beating the leukemia. If the leukemia cell counts in the bone marrow are still under 5% (as they were a couple of weeks ago) the leukemia will be considered to be in "remission", meaning that the chemo is winning. This does not mean that CJ is healed. He will still have to continue through the next phases of the treatment. If I understand correctly, these tests will let the docs know if he is ready for the next step or if they need to continue this induction phase of his treatment program.

Now for the best news of the day - his ANC is up to 2200 today!!! The doctors are very pleased with anything over 1000, but they will remain cautious since these counts can drop as fast as they rise.

We want to thank everyone for your prayers and good wishes. We feel your support and are so grateful that you are keeping CJ in your thoughts. We also want to thank everyone for your donations to CJ's fund and also for the food donations. Having dinner on hand really helps Sheree to focus just on CJ and what he needs at the moment.

CJ and I have worked on making some "Thank-you" cards. I'm sorry, we've been a little slow getting these into the mail. Please know how grateful we are for your support!

Re-admitted to 7 West

2009-03-27T20:09:00.003-04:00

Yes, unfortunately, it's true. We're back in the hospital. CJ was admitted to 7 West this morning with an infection. We expect that he will remain here a couple of days, depending on how quickly he reacts to the antibiotics.

The doctors are being very cautious with this infection because CJ's ANC is below 500 so his body has very little ability to fight off infection on its own.

We will keep the blog updated as more information is available.

Latest News

2009-03-24T18:16:00.003-04:00

Yesterday was CJ's regular weekly trip to the clinic for his chemo treatment. With an early morning appointment, this trip was shorter than the last. CJ's ANC was 300. For some perspective, a normal ANC is greater than 2500.

I've "borrowed" a paragraph from ViviAnne's blog that my niece, Stacey, put together explaining ANC. (Stace, I hope you don't mind!) Please see below:

ANC stands for Absolute Neutrophil Count and refers to the total number of neutrophil granulocytes present in the blood. Neutrophils serve as the major defense of the body against acute bacterial and certain fungal infections. Neutrophils usually constitute about 45 to 75% of all white blood cells in the bloodstream. When the neutrophil count falls below 1,000 cells per microliter of blood, the risk of infection increases somewhat; when it falls below 500 cells per microliter, the risk of infection increases greatly. Without the key defense provided by neutrophils, people have problems controlling infections and are at risk of serious complications.

With CJ's ANC so low, he is expected to be isolated from any exposure to bacteria, viruses, colds, infections. Obviously, this means that he is home-bound except for visits to the clinic or hospital.

Speaking of the hospital, after his chemo treatment on Monday, CJ was sent to Kosair for an ultrasound of his left arm. This was one last test to rule out a blood clot causing the pain and discomfort to his arm. Once the test was over, it was back home for more grilled cheese and a nap.

Ugh, One More Test, One More Trip to Kosair

Well, now it's Tuesday and we've received the ultrasound results - no blood clots - Yeah!!! But, when viewing the ultrasound, the docs couldn't see the end of the tubing on the port. So, you guessed it, one more trip to the hospital - this time for an xray. Sheree and CJ headed off this afternoon while Greg stayed home with Hunter.

As we've learned from Brent and Kristen, you just never know what ordeal you may have to go through when you show up at the clinic or the hospital. Once they arrived at the hospital, Sheree was told that they had to access CJ's port to run dye during the xray. Since they couldn't do that in the radiation department, they had to go across they street to the clinic and have them access his port. Then back to the hospital for the xray. Once the xray is over, it's back across the street to have the clinic remove the "straw" from the port. Poor CJ is suffering from joint pain in his legs as a side-effect of the chemo treatment so Sheree ended up carrying him back and forth! Next time we will know to find a wheel chair instead.

The result was good - the xray showed that the port was fine. Even better, no more shots of blood thinner!!! CJ isn't believing us yet. Every time someone walks into the house he thinks they're there to hold him down for his next shot. It breaks my heart to think of the torture that must be for him and the kids.

So unless something eventful happens over the next several days, we will probably have nothing much to report. He is not due for another treatment at the clinic until next Monday. They will do another lumbar puncture at that time and as always, will be checking his ANC. Here's hoping we will see his numbers come up!

The Music Therapist

2009-03-23T12:37:00.005-04:00

During CJ's last stay at the hospital some of his favorite moments were going to the play room and visiting with the music therapast. She put together a fishing game that CJ particularly enjoyed. Here are some pictures of those visits.

Home Again!

2009-03-21T09:09:00.009-04:00

CJ was released from the hospital yesterday. After a long afternoon of waiting - for paperwork or whatever - they finally arrived home around 7:00 PM.

We have test results!

The CT scan did not show any clots, but they are not yet ruling one out completely. There is one more test they want to run, but they will do that Monday during his next trip to the clinic for his chemo treatment. This test will be another scan, but only of his arm. They will run dye into his veins and look for any kind of blockage in his left arm.

We've also received the results of the bone marrow aspirate and spinal tap that they did last Monday. The purpose of these tests is to monitor the effects of the chemo. When CJ was originally admitted to the hospital the concentration of leukemia cells in the bone marrow was 93%. The goal is to reduce this count to below 5% in the first 28 days of treatment. CJ's count in his last bone barrow test was indeed, less than 5%, but the doctors have advised that it is too early to be too excited by this good news. The important thing is that these counts remain below 5% at the end of the first 28 days. What these results do tell them is that the treatment plan appears to be working. CJ's bone marrow is now beginning to produce it's own cells again. The question is whether or not his body will continue to produce the leukemia cells (immature white blood cells) or whether it will produce them in such low amounts that the chemo can keep them under control. That's what the next test will tell . (I am probably not explaining all of this with technical accuracy. And I hope what I am saying is not misleading. This is my understanding of what is happening, so forgive me if we find out later that I was off base.) -
The spinal fluid test came back clear of any leukemia cells. They will continue to monitor this throughout the treatment program so they can catch any developing cells in the central nervous system

About those steroids...

Steroids are used in combination with the chemo to kill the leukemia cells. This treatment itself is not too bad - CJ takes a liquid dosage by mouth several times a day. The effects of these steroids on his body - mood swings and incessant hunger make this one of the dreaded phases of the treatment.

CJ is beginning to "puff up". This is not puffed up as in bulk and muscle like an athelete. His little cheeks are getting puffy and his little tummy is really pooching out there! He can't get enough to eat. Last night as he was finishing off a large plate of "hot cheese" he asked for cheese sticks. While Sheree was heating the oven to make the cheese sticks, he decided he couldn't wait and needed a peanut butter and jelly sandwich. He ate them all - the hot cheese, PB & J sandwich and the cheese sticks!

Today his food of choice was more hot cheese, corn dogs and grilled cheese sandwiches. I know I made him two sandwiches and I have no idea how many Sheree made during the day. He won't eat the crusts, so Hunter is enjoying the cast-offs. We chuckled a little that we think Hunter can keep up with CJ in the eating department even without steroids. Let me tell you, that little one can pack it away!

C jdid not feel well at all today. He didn't have the energy to do much more than lie on the couch and watch videos. He tried to play a little Wii, but just couldn't stick with it for very long. He and Mommy were able to take a good nap, though.

He is taking a long list of prescription meds including laxatives that are keeping him running to the potty. The vinchristine (chemo treatment) he gets on Mondays causes constipation so they keep him on laxatives during the week. It made for a very miserable day for him today.

On top of everything else, he has to take two shots of blood thinner each day - one in the morning and one in the evening. Sheree has been taught to give these shots to him in his thigh. I was Mommy's helper this evening and I'm not ashamed to tell you that I cried worse than he did. I'm pretty sure that wasn't the kind of help Sheree needed, but there was just no controlling myself. I headed to the livingroom in tears, trying to hide from both Sheree and CJ. There's something so wrong about a mother having to do that for her child!

Sheree found me in the livingroom and told me that after I left his room, CJ looked at her and asked her to give him the shot slow - not too fast. I'm coming apart at the seams over it and he didn't even know she had already given him the shot. I guess I diverted his attention after all.

Hopefully, tomorrow will be a better day. He still has to endure two more shots, but we are hoping the laxatives will have worn off and he will be more comfortable during the day. The next big concern is how they are going to get through Sunday night and Monday morning when CJ can't have anything to eat before his next scan.

Nothing Much to Report

2009-03-19T18:55:00.002-04:00

I just wanted to give everyone an update - such as it is...

Unfortunately, we don't have much more information than we had last night. The results of CJ's brain scan came back clean so he was started on blood thinners during the night. He had his other scan today and we are still waiting on results. In fact, we're still waiting on results from Monday's bone marrow and spinal tap. It certainly can be frustrating - all of this waiting!

Sheree was hoping this stay would be a short day or two. We'll keep our fingers crossed, but I fear it may take longer to regulate the blood thinners. They did give him platelets today. From what Sheree tells me, this is because of the changes to his blood due to the thinners.

I'll probably just add to this post later - once there is more to report.

Back to 7 West

2009-03-18T22:34:00.002-04:00

CJ went to the clinic today for a blood check and was re-admitted to the hospital. His counts are still low, but not low enough to require more transfusions. Actually, they are better than when he left the hospital on Monday, which is a good thing, but there has been a new development.

We noticed on Monday that he was favoring his left arm. He complained a little that it was hurting him. We wondered if it may have been somehow related to the fracture he received a couple of months ago, but an x-ray ruled that out. We also considered that he may be feeling the effects of the chemo which will cause joint pain, usually in the hips and legs. The doctors were concerned that there was a problem with his port so they wanted him back in the hospital for more tests.

They suspect that he may have a blood clot. Apparently, this sometimes happens when a port is inserted. They will run some sort of scan tomorrow that should verify that there is a clot. He will be sedated for this test. In the meantime they ran a CT scan of his brain this evening to rule out any bleeding there. There is no reason to suspect that there is, they just want to rule that out before starting him on blood thinners. Their plan is to start him on those later tonight after they've received the results of the brain scan.

I'm sorry, that's about all the info we have at this point. I will post another update as soon as we know more.

Please keep our little guy in your prayers.

We're Home!

2009-03-17T09:30:00.004-04:00

CJ was released from the hospital late yesterday afternoon. He is very happy to be home! So are Greg and Sheree. Papaw Bob and I stopped by for a brief visit just to check in and see if anyone needed anything.

CJ's color looks pretty good, but he still has those dark circles around his little eyes. He was in good spirits and happy to be racing again on the Wii. (There was a Wii at the hospital but it didn't have his favorite Mario racing game.) He tires easily. After two rounds of racing he ate a little "hot cheese" (CJ's term for mac & cheese) then went to lie down and rest. Of course, he needed Mommy to lie down with him. He rarely lets Mommy out of his sight and I don't blame him.

Greg left to make the first trip to the pharmacy and returned with a grocery bag full of prescriptions. I can't imagine keeping up with this treatment regimen.

We don't yet have the results from yesterday's bone marrow and spinal tap. The doctors are still a little concerned about CJ's blood counts. The let him come home today without the test results, thinking he would be more comfortable there and he can forego the every 4-hour temp and bp checks. The doctors want to see him at the clinic tomorrow to check his blood levels again. We're hoping they will have the results of the bone marrow and spinal fluids by then.

We will keep everyone posted as things evolve. In the meantime, we want to thank everyone for their prayers, well-wishes, food and contributions. Your outpouring of love and their faith in God form the foundation that gives Greg and Sheree the strenghth to keep moving forward.

Coming Home? - Maybe!

2009-03-16T08:43:00.003-04:00

Today may be the day we've been looking forward to for over a week now. CJ may get to come home today. Everything is riding on two tests - a bone marrow check and a spinal tap. Depending on the results, he may be home by this afternoon.

Once he is home we will still have to be vigilant about exposing CJ to viruses or infection. Aunt Christy and Ganny (Sheree's mom) have been cleaning the house in preparation.

CJ's blood counts have been low so he received additional blood and platelet transfusions yesterday. Once he is released from the hospital he will make weekly visits to the clinic to receive his chemo treatment.

In addition to chemo, CJ takes large doses of steroids each day. These drugs work in conjunction with the chemo to kill the cancer cells. They come with some side-effects that may be a little hard on CJ and the family. We expect his little body to begin to swell. He may have an insatiable appetite. His sleep patterns will be affected. He will be sleepy, but won't be able to settle enough to fall asleep. Once the hunger sets in, it will be hard for him to have the feeling of being satisfied. Sheree will have to monitor his food intake so he doesn't gorge himself. Each child seems to have his or her own favorite food during this treatment. For ViviAnne it was mac & cheese. She couldn't get enough of it. CJ so far is showing a preference for McDonald's sausage, hashbrowns and chicken nuggets. Greg has been making 6 - 8 trips a day to the McDonalds on the first floor.

In preparation for CJ's homecoming Papaw Bob and I have stocked the fridge with sausage patties, hashbrown squares, chicken nuggets and ketchup - everything gets doused in ketchup!

I'll post another update once we know the results of today's tests. Here's hoping we are on to the next stage - outpatient treatment!

A Post From Mommy...

2009-03-15T12:29:00.006-04:00

The last week has been fog to begin with, followed by the reality that life is just not fair. My life has never been easy, and I believe I am a stronger person because of it, but this week makes me wonder how much a person can handle. I have read the blog and talked to ViviAnne's parents, and heard how they went through three months of tests before they were told it was cancer. I have seen this same thing on TV - test after test and finally they find the cancer. I thought this is how it worked. Well I am here to tell you that was not the way it was for us.

I picked CJ up from his dad's on Thursday afternoon. CJ had been sick for over a week. It was strep throat - I was told it was just strep throat. We had him on antibiotics and he was getting better. He was still a little pale, but he was eating and playing again. When I got to his Dad's CJ looked pale. His dad told me he hadn't wanted to eat and had just slept most of the three days he was there.

I took him home and fixed dinner while he just sat in the chair and watched cartoons. Then I took his temp, 102.5, so I called the doctor. They just happened to have an appointment in 15 minutes. They tested for strep throat again, and the flu - both tests came back negative. Our doctor wanted a blood test to be on the safe side. He said he would call us when he got the results, which would probably be tomorrow.

We went to Harrison Co Hospital to get the blood test, then home. CJ went right to bed, and Hunter went to bed shortly after that. As I was cleaning up the dinner dishes the phone rang. It was the doctor's office. CJ was very anemic. We needed to go to the ER and retest just in case it was wrong, but if the test wasn't wrong something needed to be done tonight. I was in tears - my poor little boy. What was wrong with him?

Greg's mom came to watch Hunter. Greg, CJ, and I went to the hospital. All they could tell us at the ER was he is a very sick little boy. But how sick, no one would say. The doctor came in and let us know they had to put IVs in him, at least two. They started running antibiotics in him, a total of four. Then they had to give him blood. But still all they would say is that he is a very sick little boy, and they had an ambulance on the way to take him to Kosairs. The doctor who was working past his shift now, told us he was coming in the ambulance with us. Now I am scared. I was worried before, but they don't want to take a 30 minute ambulance ride without a doctor. That scared me! All I could think is two weeks ago I had a perfectly healthy, active four year old boy.

We get to the Kosair's ER, and that is when we hear it. "We are 95% sure it is cancer. We have to test the bone marrow to find out for sure". By this time it is after 1 am on Friday morning. And I come apart and pull myself back together every time CJ slips in and out of sleep. He is scared enough, he doesn't need to see me cry.

From the ER we go to ICU and do the bone marrow test, and get more blood. I ask how they know it is cancer and not something else? Well in a lot of cases only the white cell count, or the red cell count is low so that could mean lots of things. But in CJ's case not only are the white cell counts and the red cell counts low, so are the platelets. That points to one thing. Now we are getting moved to 7 west. I have heard of 7 West before. That is where ViviAnne goes when something is wrong.

Now that we are up in our room on 7 west they have put in a port and do a spinal tap. Doctors, nurses, therapists, the hospital chaplain, the clinic nurse, child life and everyone else is just coming in and out of the room. I am getting information thrown at me, and they all ask if I have any questions. I have no idea what I am dealing with so how do I ask questions? All I want to know is, why my kid?

On top of all this I realize I can't go to work while he is having treatments. He can't go back to school for a couple of years. We just lost one of our incomes and are going to have tons of medical bills coming in. This is just too much for one family to handle at once. As the days go by and I learn more and more each day the fear is filled with knowledge. I am still scared to death, but at least I know what to expect.

A Special Visit

2009-03-14T16:21:00.005-04:00

I'm sure anytime a family receives news that their child has this devasting disease they go through a moment of absolute disbelief. You just can't imagine that this beautiful, seemingly healthy, child could be stricken with such a horrible illness.

As we were sitting in the ICU hearing the doctor's words, I could only think, "this is just not possible!" The first call I placed was to my sister, Kim. I knew she would understand exactly what was going through my mind. I could see the faces of the people around us, I could hear the words, but I just couldn't put things in place. I literally could not breathe. I wanted to be strong for Sheree and Greg. I couldn't let them see me fall apart. How we ever got through that morning I'll never know. I don't want to re-live it to try and figure it out!

Kim and I were born 15 months apart. I was the oldest and she was the second of six. We've shared just about everything during our lives, from a bedroom & childhood illnesses to our own weddings & pregnancies. We've been through the weddings of our children and now are having grandbabies together. But as Kim said to me that morning, "this is something we were not supposed to share."

Kim's 3 year old granddaughter, ViviAnne Grace Bohannon, was diagnosed with ALL in July of last year. She is 8 months into her treatment program. She has been through the first two phases of treatment and is now in the maintenance phase. ViviAnne had just left the hospital a few days before CJ was admitted. (Believe it or not, she was in room 738 during her last stay there - the room CJ is in now.) She was hospitalized while she recovered from a bout of RSV, a respiratory virus. This is a dangerous illness for a cancer patient undergoing chemo treatment so the doctors take every precaution.

Since ViviAnne had been ill, her counts have been down for the past few weeks and she has been unable to receive her regular chemo treatment. She had an appointment on Friday to have her blood checked. Her counts were back up so she was able to recieve her normal treatment. The clinic where ViviAnne receives her treatments and where CJ will receive his is located just across the street from Kosair. So, on their way home, ViviAnne, Kristen (her mommy) and Aunt Kim (her grandma) stopped by to check in on CJ.

The doctors and clinic staff are all aware of the connection between ViviAnne and CJ so they gave ViviAnne a message and a sucker to take to CJ. The message was - the doctors are nice, so CJ should let them look in his mouth. The sucker was just for fun.

We were a little concerned that they may not be able to come into CJ's room to see him since he had been in isolation since Monday because of his mouth sores. But since he finally agreed to let the docs have a peek inside his mouth and it was so much better, he was removed from isolation and ViviAnne was allowed in his room.

ViviAnne saw immediately that CJ had a port. She showed him hers and he let her look at his. He was a little surprised that she "looks like a boy". ViviAnne began losing her hair in the early stages of her treatment. She finally lost the last of it just before Christmas. CJ hasn't seen her since then. I don't think he really understands yet that he will soon lose his. I'm hearing rumors of a head-shaving party at the hands of Aunt Christy soon after CJ comes home from the hospital. If you are interested in participating, I'm sure Christy has plenty of razors!

If you would like to know more about ViviAnne and her diagnosis here is a link to her blog:

http://www.viviannegrace.blogspot.com/

A Little Bit About ALL

2009-03-14T16:03:00.004-04:00

Acute Lymphoblastic Leukemia (ALL.) is a cancer of the white blood cells, the cells in the body that normally fight infections. Leukemia cells are abnormal cells that cannot do what normal blood cells do. The abnormal cells are immature white blood cells that cannot help the body fight infections. For this reason, children with ALL often get infections and have fevers.

Children with ALL frequently have low amounts of health red blood cells and platelets. As a result, there are not enough red blood cells to carry oxygen through the body. The patients may be anemic and may look pale and feel weak and tired. When there are not enough platelets, patients bleed and bruise easily.

Leukemia cells travel through the body. In ALL, the abnormal cells may collect in the brain or spinal cord. In boys, leukemia cells can also collect in the testicles and cause swelling.

Little is known about the causes of and risk factors for childhood ALL. Scientists know that ALL in children occurs slightly more often in boys than in girls and in white children more often than in black children. However, they cannot explain why one person gets leukemia and another does not.

Certain factors affect prognosis and treatment options.

Age and white blood cell count at diagnosis.
CJ’s age (4 yrs old) and low white cell count are working to his advantage.
How quickly and how low the leukemia cell count drops after initial treatment.
The initial treatment usually takes up to 28 days so we won’t know the answer to this for awhile yet.

Gender and race.
ALL occurs in boys more often than girls and the treatment program for boys is typically longer than for girls.

Whether the leukemia cells began from B lymphocytes or T lymphocytes.
The sub-type of ALL that CJ has is pre-B cell. It is my understanding that this is the most common and most treatable sub-type of ALL and ALL is the most common and treatable form of leukemia.
Whether there are certain changes in the chromosomes of lymphocytes.
A sample of cells retrieved from CJ’s bone marrow are being tested now. It will be another week or more before we will have the results.

Where the leukemia has spread to the brain and spinal cord.
CJ had a spinal tap last Saturday. The doctors were encouraged that the fluid sample they took was clear – not cloudy. Their initial report was good – they found 2 white blasts and 2 red blasts. They expected the lab report to come back negative for any cancer cells in the spinal cord or brain.

Whether the child has Down syndrome.
CJ does not have Down syndrome.

Treatment Plan

The earlier ALL is detected, the more effective the treatment. The aim is to induce a lasting remission, defined as the absence of detectable cancer cells in the body (usually less than 5% blast cells on the bone marrow).

CJ’s treatment plan will include intensive combined treatments of chemotherapy and steroids. He will receive some of these drugs through his port, some will be injected into a muscle (thigh) or tissue (under the skin) and others will be administered orally – by pill or liquid. Because this disease can invade the central nervous system, CJ will receive periodic doses of chemo directly into his spinal fluid. Each time the doctors draw spinal fluid for testing, the fluid will be replaced with a chemo treatment.

The treatment of ALL usually has 3 phases:
Induction therapy: This is the first phase of treatment. Its purpose is to kill the leukemia cells in the blood and bone marrow. This puts the leukemia into remission.
Consolidation/intensification therapy: this is the second phase of therapy. It begins once the leukemia is in remission. The purpose of consolidation/intensification therapy is to kill any remaining leukemia cells that may not be active but could begin to re-grow and cause a relapse.
Maintenance therapy: This is the third phase of treatment. Its purpose is to kill any remaining leukemia cells that may re-grow and cause a relapse. Often the cancer treatments are given in lower doses than those used for induction and consolidation/intensification therapy. The length of maintenance therapy is 3 years for boys, 2 years for girls.

Harrison County to 7 West

2009-03-11T20:47:00.003-04:00

Well, here we are - 7 West - the oncology floor at Kosair Children's Hospital. The diagnosis is acute lymphoblastic leukemia, or for short - ALL. From what we have learned ALL is the most common form of childhood leukemia and the most treatable.

Our nightmare began 6 days ago on Thursday, 3/5/2009. A week or so before, CJ had been treated for strep throat. At first he seemed to be feeling better, then he began to weaken and started running a temp again. Sheree took him to the doctor and they ran some blood tests. Later that evening Sheree received a call from the doctor telling her they needed to get CJ to the emergency room for more blood tests. Greg and Sheree rushed him to Harrison County Hospital in Corydon where they re-tested his blood. At first, there was talk that it could be a virus, or possibly, a low-grade infection. His little mouth was covered with canker sores. He was just so miserable.

When the second set of blood tests returned the same results as the first, doctors at Harrison County had CJ rushed by ambulance to Kosair Children's Hospital in Louisville. His red cell, white cell and platelet counts were all dangerously low. They gave him transfusions of whole blood and platelets during the night and the following day. Once we arrived at Kosair they drew more blood, took xrays and ran more tests. After a couple of hours we were moved upstairs to the ICU. CJ dozed off and on, but never really slept. In the early morning, a doctor came in, pulled up a chair and told us it was time to talk. She was really very kind as she told us they were 95% sure that CJ had leukemia but they would have to do a bone marrow test to confirm the diagnosis.

Later that afternoon they did the bone marrow biopsy and moved CJ to 7 West. Within 2 hours the first results were back and the diagnosis was confirmed. More samples of his bone marrow have been sent to the lab to determine if the cancer has affected other organs like the liver or spleen. The next step was to have a port surgically implanted in CJ's little chest. This is a catheter that runs directly into a major vein. Once it was inserted, they were able to remove the IV's that had been placed in his arms. During CJ's treatment he will receive some of his chemo drugs, blood transfusions and other medications through this port. He will have his blood drawn and tested 3 times a day. They can draw blood from his port so he doesn't have to be stuck every time.

While he was under anesthesia having the port placed, they also did a spinal tap. They needed to test his spinal fluid to determine if any cancer cells appeared there. As a standard part of the treatment protocol, they inserted a chemo drug directly into his spine to replace the spinal fluid they drew. He will receive periodic spinal taps and bone marrow biopsies throughout his treatment program. I will have to follow-up with Sheree to see if they have received the lab results of this test yet.

Because CJ was admitted over the weekend, we didn't really get a full sense of what life is like on 7 West. It is a busy place. We spent the day Monday watching a steady stream of people come through CJ's room. I don't mean visitors, but hospital staff, doctors, volunteers, administrators - you name it - they stopped by. They have music therapists, art therapists, massage therapists and the most wonderful professional staff! CJ's room quickly began to fill with deliveries...balloons, baskets of snacks, toys, cards and love - lots and lots of love.

All of the activity was a good thing since that morning, CJ was placed in isolation. He was required to stay in his room...no visits around the corner to Evan's Playroom which he discovered on Sunday. The sores in his mouth were determined to be a form of herpes virus and they couldn't risk exposing the other kids on the floor to it. He will be required to stay in isolation until it's better. Visitors must wash their hands as they enter and leave his room and we must wear gowns while visiting.

The plan for Monday was to begin the chemo drugs, but they couldn't give him the first dose until he pooped. Don't anyone question CJ's stamina and will power. He refused to go and nobody was going to convince him otherwise. No begging, pleading, prodding, or bribing was going to work - not even multiple doses of over-the-counter and prescription laxatives was going to make things move. Finally, the laxatives took over and we had success, but not until 11:00 pm. The chemo was administered before midnight that night.

Welcome

2009-03-10T14:29:00.000-04:00

Welcome to CJ's new blog. This blog will be a collaboration of Sheree (Mommy) and Kitty (Greg's Mom). Sheree and Greg are at Kosairs with CJ starting the first phase of Chemotherapy. Sheree will send updates for Kitty to post here as often as possible. Check back soon for more info.

Also, a PayPal account is being set up to accept donations to assist Sheree and Greg with the expenses of CJ's treatment. Please look to the right for info on how to donate.