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!