I made it!

Posted by: Mommy It has been a crazy couple of months, but good news overall. CJ had his last chemo treatment at the end of April. Then mid May he got to finish his chemo pills. It was so strange not having to go through the nightly routine of getting cut off from eating and drinking by a certain time so he can take his medicine on time. We don’t have to plan everything we do around treatment and medicine. Plus no more steroids and no more “Roid Rage” would have to be my favorite part. Ever since treatment ended CJ’s check ups have surprised me. First month after treatment was over I was expecting his ANC to shoot way up over 2000. He has been so steady with his counts for almost a year having them land between 1700 and 1900. He gets his blood test and to everyone’s shock his ANC was 700, yet no one was worried. This was a completely different world than what I am used to. Before 700 meant we were home bound until they came up, now they said he could still go to school. He still has most of his precautions for at least six months after he stops treatment. He also has to take antibiotics for the first six months as part of the precautions. The doctors said his counts could be so low because he could be fighting something off. Luckily nothing became full blown, and he didn’t get sick. Since he did have such low counts getting his port taken out got put off. He went back the next week to get his counts checked to be on the safe side. His ANC went up 1100, which was good. We went back this past Tuesday for a check up and his ANC went up to 2300. That is what we need to expect. Since his counts recovered he was cleared to have his port taken out. Now I sit and wait for the phone call on when the surgery date is. I was told they would call me very soon and it would probably be next week. I guess the hospital’s idea of very soon and mine are two different things. I don’t think they realize I am a planner and need to know now instead of last minute. We waited this long I can suck it up a little loner. I think I might be more excited about the whole than CJ. On the personal side CJ has done baseball the last few months, with his team being the league champs for the rookie boys. If he keeps this up CJ will need his own personally trophy room by the time he gets out of high school. CJ also participated in Medals 4 Mettles program this year, which has medical students run in a marathon or mini-marathon and then they give their medals to the cancer patients as a way to encourage them through their treatment. It is a great experience and I am glad CJ got the chance to do it. CJ also had a party at school the day after his last treatment. I sent a cake (sports theme of course), and they celebrated his treatment finally being over. Now it is time to start our new normal for about the hundredth time in the last three and a half years, but now I can say CJ is not long a cancer patient, he is a cancer survivor.

3 years down

Picture#1 CJ on his 7th birthday
Picture#2 100 day project, with 100 Popsicle sticks

Posted by Mommy

Well it is that time of year again, CJ’s anniversary of his diagnoses. Monday it will be 3 years we have been in treatment. I say we because CJ might have had to taken the medicines but it has changed the entire family’s life. We went to the doctor this past Tuesday and came back with good news and a little reality check also.

First the good news, we thought CJ had 3 more treatments left after this last one, but he only has two. YEAH!!! He will have a spinal tap next month, (his last one). Then at the end of April he will have his final chemo treatment. He will then be on his chemo pills for a couple more weeks after that. He goes back at the end of May and his port will be accessed to drawl blood for every test known to man. As long as those come back good he will have surgery to remove his port in June. Also his ANC this last month was 1700 and holding steady. He has been very steady for a long time, which is good.

Now for the reality check, after chemo ends that does not end everything. We don’t just go back to how things were before he ever got sick and try to forget the last 3 years like it was a bad dream. The hardest is finished but we haven’t reached the finish line just yet. After CJ ends treatment we still have most of our precautions that have kept CJ out of the hospital for the last three years. It takes 6 months for his immune system to recover from the chemo. So the big plans of spending the summer at the lake will have to wait until next summer. Relapse is still possible and we can't let down our guard just yet. He will still go to the doctor every four weeks for blood tests and check ups for the next year. Then after that the appointments start to get further apart, but we will have five years of observation before he is considered cancer free. Each year of observation the chances of relapse are less and less.

One a personal note, since my last post CJ has turned 7 year old. He is still the tallest kid in his class, and seems to grow in front of my eyes. He is getting ready to start baseball this month and is in the next league up, instead of t-ball. He is also making A honor roll in school. As I looked through the pictures posted from the beginning of treatment CJ doesn’t even look like the same kid. He has grown and matured so much in these last 3 years it is hard to believe. He is such a great, brave strong kid, and a hero in our hearts.

Merry Christmas

Posted by: Mommy

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

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

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

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

update

Post by: Mommy


Picture #1 decades day at school

Picture #2 first day of 1st grade



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

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

Almost a First Grader

Posted by: Mommy

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

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

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

T-ball

Posted by: Mommy

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

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

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

Two years down

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.