Happy Holidays

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

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

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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

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!!

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

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

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

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

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

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

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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.

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

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

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

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

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

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

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

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

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

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

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

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!

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...

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!

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

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

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

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!

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

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

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!

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!

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...

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.