Rads Week 3

We entered Week 3 of Radiation ("Rads") this week. So far, so good. It is a bit unnerving to sit under a big MRI looking machine and get zapped, but Linda seems to be managing it well. She is a bit tired, but likely that's from all she has been through. Her skin is so far doing well but we keep a good amount of Aloe on it. She got her tumor markers checked (blood test that should correlate with any tumor activity) and they were good. So, we continue with NED (no evidence of disease) which is where we want to be! Some people have asked why we need to continue treatment if the cancer is gone. Even though there is no evidence of cancer after the chemo and surgery, there still may be microscopic remnants in the local area of initial tumors (Lymph nodes and breast) so they zap those areas with radiation. It is quite effective and the side effects now are minimal (the doses are much better focused and lower than those of years past).
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Linda has started to do some light running again after just focusing on walking thru her other treatments. She is also enjoying her hair!

Ava is doing quite well! She had her checkup from the home nurse and is tracking at or above her adjusted age of 5 months. She has no signs of Cerebral Palsy which is one more thing they check for since preemies are more apt to have that (I try not to read too many statistics on her since we'd constantly be checking her for all kinds of things). Ava seems to be a happy baby, and when she is not, it is usually solved by food, diaper change, sleep, or attention. Like her mom, she is very social and enjoys others!

Linda, Ava, and I did the Relay for Life at Oregon State last weekend. We did the "survivor lap" initially and then Linda also walked with her infusion nurses for awhile. It was a powerful event, to have hundreds of people applauding us as we walked the circuit (I got a special purple "caregiver" sash which was quite stylish, and complimented Linda's "Survivor" shirt). Linda and Ava are both survivors of breast cancer, and it is nice to celebrate that.

Rob.

Doctors, Tattoos and Radiation

Doctors appointments seem to be the norm, these days.... At least one but often more per week. Ava had her eye exam a couple weeks ago. We went to a pediatric opthalmologist that comes to Albany from OHSU Casey Eye Institute. Ava's eyes looked great which was a nice relief. We thought they were probably okay they way she can spot us from afar, but sometimes there can be hidden issues. Extreme preemies are more likely to have problems so they will continue to monitor her every six months. There was no sign of ROP (retinopathy of prematurity) and the Doctor said he couldn't even tell she was a preemie from her eyes! The nurse commented she wished all babies Ava's age were so cooperative.

Ava had her vaccinations, last RSV shot, and a checkup from the pediatrician. She continues to do great and is over 15 pounds now! Our nurse told us to work more on her core muscles but she just does not like her tummy time anymore (in the NICU, she used to breathe better on her tummy but now she does not like it whatsoever!).

We've gone from paranoid parents (trying to avoid colds) to cautious parents. We've been getting out and about and able to visit our friends with kids again, which is nice!

Linda got her radiation tattoos (very small marks they use to line up the radiation - look like a small freckle). We met again with the radiation oncologist a couple weeks ago and the plan is the same - 6.5 weeks of radiation (5.5 weeks with a 1 week "boost" at the end). The research is also still showing that Linda would benefit from radiation in the lymph nodes area so she will get that too as part of the deal (there is/was some debate on this, but some newer research indicates it is helpful).

Her first day will be tomorrow (5/5) and continue thru the third week in June. Treatments are Monday thru Friday and it looks like we'll have a morning treatment time. The radiation appointment should only be about 30 minutes so that is nice. Radiation doesn't seem so scary after chemo, preemie babies, surgeries, etc. It feels to us like the last leg of a long marathon. But, there are still risks and side effects (like everything), so it isn't exactly a cupcake treatment either. We're assured that radiation is much safer today than long ago, and side effects should be limited to potential higher lymphedema risk, sore skin, and fatigue. We're praying all goes as it should and we have a nice, boring 6.5 weeks of radiation.

Rob.