Two years down

Posted by: Mommy

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

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

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

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

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

Crazy Month

Posted by: Mommy

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

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

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

home

Posted by Mommy

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

quick update

Posted by Mommy

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

no news is good news

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

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

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

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

A good day

Posted by: Mommy

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

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

take the good with the bad

Posted by Mommy:

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