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!