Journal

Saturday, February 4, 2012 5:56 AM CST

Saw Dr. Sima 2/3/12 for Owen's 6 month checkup for KNOT cllinic - Kids NOT on treatment. Woo Hoo - love that - not on treatment!!!

Dr. Sima has read, and re-read Owen's chart, got all missing information found and created his Leukemia Roadmap in a summmarized version for easy reference. Basically gave dates of Diagnosis, Relapse, Surgery's, Radiation Quantities, and Chemo Summary with total quantites of what was poured into his body over the several years. Yikes he had a lot done to his little body!!! Scary to think of all that was poured into him. But as she said 'You are Alive today and doing great!!' and yes he is!!!

Dr. Sima is a hoot, she has a way of reaching the kids and is very funny. They give you a chart prior to the visit to select things that have happened in last 6 months or things you want to talk about. So we had checked Owens knee pain, some bloody noses, blood in his stool, and his ability to have kids.

Her take on his ability to have kids:
* He will not be able to have children. The original Total Body Radiation, and chemo to prep for the bone marrow most likely had eliminated that, but then the Testicle radiation he received for his relapse definatley ruled that out. She went on to explain there are many ways he could have children, he could choose the sex, the color, the nationality, the age.... he had sooo many more options. He could bribe me for things if I wanted him to have a little girl.... hmmmm Owen took right off on that one!!!!! She also discussed while he was sterile - he could get STD's still and at all cost he must 'Protect the Penis' Oh how Owen loved this. So yes - she reaches the kids, at least Owen's sense of humor!!! He actually even posted on Face book (with a side note for me not to get mad LOL) I need camoflage rubbers so no one can see me cumming. Oh the fun of starting these teenage years......

One thing I did not know and thought was great is they have changed the protocol for kids like Owen that have the mixed lineage AML/ALL leukemia. After transplant for the AML they know go right into the ALL maintenance plan, so low doses of chemo for 2-3 years. Reason is the ALL does just what it did in Owen. It is killed with the transplant along with the AML, but can find places to hide and lie dormant and then come out. In Owen it hid in his testicles. So with going right into the maintenance phase the chemo will seek out these hidding spots. After Transplant owen received chemo for 4 weeks with shots in his spine and then he was done, thus giving the ALL the chance to survive. This is great news for the future on mixed lineage kids. Although perfect news would be to eliminate Cancer all together!!!

His knee pain is AVN related. It is caused by the steroids received. The down side is there is nothing to do, we will not be going on to see anyone else, Dr. Dickhead Damron will continue to monitor him. She said that Owen needs to learn to work through the pain , and possibly start a journal to target what things may set off the pain. Many Many years in the future he may need Knee surgery or replacement, but is no where near that now.

His bloody noses are mild and spread out. We will continue to journal when they happen, but are 'normal' and probably the result of the heat in the house. they are infrequent - about once a month and not a sign of anything.

His bloody stool - well it was once, and she asked owen if it was 'hard' and 'large' when he saw it. He said yes, so again normal. She asked if Owen took a picture of it? Owen loved this, again taps right into a boys sense of humor!!! He did not, so she offered up he might want to in the future and send to his mom or Dad. I voted right then to be removed off that - I did NOT want a picture!!!

We touched on some other things - again Owen's eating habits and exercising. 2 things MUST work on. He is at an elevated risk due to chemo for diabetes and heart issues and weight definately falls into something he can control to prevent that. High risk for heart was at 300mg/m2, he was at 160mg/m2 for the dosage of chemo he has had.

We do not go back for 6 months again. Once he reaches 5 years off treatment (may 2013) he will go to once a year. this is only 15 months away!!! Wow seems like incredible and impossible all in the same breath.

thankyou all again for continuing to check in on Owen. things all seem to be going in the right direction and I only need to worry about the 'normal' kid stuff. Sometimes I think the 'normal' is harder!!! Wow the attitude of a teenager, worse than steroid rage sometimes!!!

Angie

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