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.
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.
