Today was supposed to be Charlie's surgery day. He was finally going to get that hole in his heart fixed. Rachel had everything ready for the week, Brennan's schedule worked out, and Ken took the week off. They took Charlie into surgery at 8:30 am, and a little while later the surgeon came out. Not a good sign! Charlie's fever went back up to 102.2. He has had fevers off and on all summer. They have done zillions of tests and can't find the reason. So, now they do a bunch more tests and cultures and see if they are missing anything. He is still intubated and sedated, and they should let him wake up in about an hour or so. Rachel and Ken are waiting for the test results and will talk to the specialists and decide what to do. You can read more details here: Love is Sugar Free.
In other news about Charlie, he is doing so well in so many ways! He knows several signs (sign language), and says a few words. He has been having physical, occupational, and speech therapy twice a week and they are getting him to use his legs! At first he wouldn't even put his feet on the ground, and now he can use his legs to support himself! He is happy and loves to snuggle. Now if only we could get his heart healed...
Brennan will be 2 on Sept. 26th! He knows most of his colors and the signs for them! He is talking a lot more, although he is hard to understand unless you know the context. But he will try to say most everything now. He even makes up signs for things too! He says things like "mommy's car gold" and "Sissa's(Alyssa's) car". He recognized Alyssa's car after just seeing it one time before! He is a sweet, fun little boy. Of course he has the occasional melt down--but they don't last very long.
I am getting excited about going back to work (although this surgery stuff is putting a damper on that now). I start next Tues, Sept. 6th. I even did a little clothes shopping--it's been awhile since I've needed clothes for work! I wish I could say that I've lost all the weight I gained this last year, but I haven't. I'm working on it though! I'm feeling pretty good, and getting my strength and stamina back!
Please keep Charlie in your prayers. God is hearing those prayers, I know. I'm sure there is a good reason the surgery was cancelled, because God was there with Charlie and the surgeons.
Love and blessings!
Tina
Well, I'm done! I couldn't be more excited (well, I could be if I weren't tired from the Herceptin!). I had my ct scans (chest, abdomen, and pelvis) and bloodwork done last week. Scans are all clear, and bloodwork is good. One of the liver tests (alkaline phosphatase) was elevated, but I think that is from a minor bladder issue I have had since my colon resection. We'll check it again in 3 months.
Today I saw my oncologist and had my LAST Herceptin infusion. I asked my onc., Dr. J, if I can call my self NED (No Evidence of Disease) now and he said yes, both cancers are in remission. He said I was actually NED when I had surgery, because there was no evidence of the cancer after that. I said I wanted to wait until I was done with everything before saying that. It's not too exciting to be NED when you still have to go through chemo and radiation!
When my nurse called me back to the infusion room she had a big smile, and several other nurses congratulated me. Unfortunately my 2 regular nurses weren't there, and one will probably be on maternity leave when I go back. But it was nice that everyone was so happy for me. They know what a long road it has been!
In 6 weeks I'll go back to get my port flushed, then 6 weeks after that (3 months from now) I'll have labs done and see the oncologist again. 6 months from now I'll have more ct scans, labs, and see the onc. again. I only need a mammogram and MRI once a year, so that won't be until next April. Mammo and MRI are for the breast cancer; the ct scans are for the colon cancer.
Well, that is the cancer update!! In other news, we moved Shonna back to KCMO a week ago. She moved into a different house, so we had to paint and move furniture. I MISS HER! It was so nice having her here for a few months over the summer. Now I have to get used to her being gone all over again. I want to go visit her in October when my school will be on break.
Yes, I am going back to work, finally! School starts Sept. 6th. Yikes! Just a few weeks away! I am looking forward to it. I think I am really ready to get on with life. Took me awhile! I have enjoyed being home, but it's time to get back to working. I'm only working 3 hours a day, though. I wanted to be able to help Rachel out with Brennan and Charlie as much as possible.
Charlie's surgery date is set for Aug. 30th. They will close the hole in his heart at that time. It is a risky surgery, but it's necessary. Until the surgery he will be getting worse because more fluid will be building up. He'll be short of breath, and get worn out easily. Even eating will be hard work for him. He takes Lasix to reduce the fluid in his body, but they don't want to increase that before surgery. So please pray for his comfort, a successful surgery, and a quick recovery. Remember Rachel and Ken in your prayers too! This will be a stressful time for them as well!
Alyssa and Jaren are doing well! Cheerleading is in full swing, so that keeps Alyssa busy (she's coach), along with her part time job at Noodles and Co. They like her so much there they want to make her shift manager already. Jaren will start next week as a part time police officer in our local police dept. He'll be fulltime in Nov. when he is done with school and gets sworn in. They recently got baptised together in a nearby lake! I'm so proud of them both!
Well, Brennan will be here soon, so I better get off the computer! Charlie has physical, occupational, and speech therapy twice a week, so I watch Brennan during that time. Tomorrow C has a ct scan, so B will be here early, and spend most of the day here. I think I get Thurs. and Fri. off!! I'll have to plan a lunch or something!
Blessings to all!!
Tina
