Saturday, February 19, 2005

Lately we have just been tired. We get up in the morning have maybe a half an hour before Anna starts to tell the world that it is time to get up, usually around 6:30. Abby gets woken up since they are in the same room and so I either move her to our room or just let her get woken up by Anna.... Then it starts, we get them up, or I leave for work and Tiffany gets them up, and the day gets going. Meds, meals, naps, germ-a-phobic hand washing, play times and the like all day long. For awhile there, when Anna was also on meds for RSV, bedtime seem more like medtime. I'm glad she is off of those! Currently we give Abby an antinausea med at 6pm, clean her mouth, rub Nystatin in it too, then no food or milk, at 7 she gets her Ara C via her Broviac tube, (clean the access cap, 3ml saline, Ara C, 3ml saline, then 1.5 of Heprin) then the 6-MP crushed up and put in chocolate syrup, and then get her to drink lots of water with it while we read a story. Somewhere during the day we clean her Broviac site where it enters her skin so she doesn't get another staph infection. And then to bed, lately we've been putting her down in our bed with towels over our comforter and a bowl just encase the nausea matures and decides to exit via her mouth. By 8pm we usually get to sit down, contemplate the day and try to rest a bit before it all starts again tomorrow.

<>In the midst of this I did have some energy so I went running; only my second run since this whole thing started, and man was I tired. I thought I'd just do a little jog to relieve some of this pent up stress and get out in nature, so I drove to the west edge of town to run around the foothills. There are some really nice trails that roll up and down along the bottom of the hills there, a great place to jog, think and pray. I got out of the car, stretched and started up the dirt trail. It was getting late enough that the sun was starting to get low in the sky. As I got closer to the steep hill ahead the sun started to disappear behind it and I was left in the shadow. This frustrated me a bit because all the joggers that were running below on the road were still in the sun yet I was stuck in the shadow of this big hill. Their road was flatter, sunnier and probably much more enjoyable than the one that I had picked. But nonetheless, I continued on my trail.

As I continued running my normal loop I realized how poorly in shape my body was too. I was soooo tired, the trail looked way too long and I didn't think I was going to be able to even make the run back down the trail. I decided to listen to the complaints of my feet and knees and turn around. So I did, I turned around to jog back down the trail. About this point is when I got my second wind, maybe it was knowledge that I was more than half way done, or a flat part of the trail but I felt great. I thought about how tired I get at home, how tired Tiffany can be and especially Abby. As I ran, I finally got back to the sunny part of the trail and the warmth of the sun felt great.

It's been pretty easy for Tiffany and I to feel run-down lately. We also feel a bit like hermits. We don't want to be hermits but after the day we are just spent. Often, I look down off this hill that we are on and see all the people running their flat routes in the sun and just wish that was me. But it's not, and actually I think I'd rather be right where we are. I like our path, I like the rolling hills, the big rocks along the trail, all that stuff. Sometimes wish that it was sunnier and that I was in better shape for it but the more I run it the better shape I'll be in right. Really I like the run though, sometimes it’s tiring, but it also can be so beautiful, so peaceful and good.

So that's were I'll leave you.... I'm going to bed

Wednesday, February 16, 2005

The Eye Problem Diagnosis

So, we've been watching Abby look at us cross-eyed for a couple weeks now with no real improvement. The first appointment that we could get with the recommended eye doc wasn't until the end of Feb so we were just planning on waiting. Yesterday during the appointment with Dr. Smith he decided that we should probably get it check out and so he got us an appointment in the afternoon with the same doctor. This doctor works with Pediatric Oncology patients primarily so that was why we were waiting for him, Dr. King.

Tiffany took Abby there in the afternoon after the lumbar puncture (LP), basically a spinal tap where they inject Methotrexate to get rid of the cancer cells on the other side of the blood brain barrier. Abby did good for the procedure considering she couldn't eat that morning because of the sedation that they use for the procedure. After she came out of it she wasn't so happy though so I think they will try it with out sedation next week. Anyway, Dr. King said that she had a blood hemorrhage in her eye, probably because of the low platelet’s that she had and that it would take a few months to clear up. Basically she can't see out of her left eye when she is looking straight ahead because there is a glob of blood trapped in a fluid sack which disrupts her vision. She can see when she looks up or to the sides, just not straight ahead. Since it will take a month or two to resolve she is going to have to wear a patch on the good eye to force her to use the left one. We'll go back and see Dr. King on March 4th to see the progress.

Other than that the only other concern for Abby right now is that her hemoglobin is low and her ANC is so low that they can't read it... so, expect us to post on the blog in the near future from the hospital. We'll probably go down with her with a fever since her ANC is soooooo low. As for the hemoglobin count Abby will be getting a transfusion again on Thursday to bring it back up, right now it is on ly 8.1, pretty low.

Anyway, there's the info! Anna doing better, Abby is in a good mood mostly and other than being perpetually tired, Tiffany and I are doing great! Thanks again for all of your support!!!

Bye, bye.

Sunday, February 13, 2005

Did I mention Anna has RSV?

I think I forgot to mention that Anna has a chest infection, most likely RSV. They put her on a bunch medications too, makes bed time that much more fun!:) One of the meds it Predinsone! One of our favorites, also a air way diallator, and an antibiotic.

She seems to be doing much better now we just hope Abby doesn't get it! Yikes! Oh well.

Just thought I should let you all know.

Abby's doing Great!

Just a quick post to say... Abby's doing great! The Ara C and 6-MP, the new chemo drugs, aren't making her nauseous and she is walking around a lot more this week.

I'm a bit better with giving her the Ara C in her IV tube now, but still I'd rather not. This week I spilled some on my hand and we got repremanded by the office for trying to get the air bubble out... it was a BIG bubble by the way but still... They told us to leave the bubbles!!! And also how carcinogenic that Ara C can be, alters DNA and such. My thought was, "why are we giving this carcinogenic drug to our daughter again?... to get rid of her cancer?... ironic huh? Anyway, if my hand starts to glow or grow large tumors out of my palm I'll probably give them a call. I did have to throw away my shirt that I was wearing at the time, my YLI journey shirt... I guess I'll just have to be ok letting some things go along this journey! :)

Abby helped make cookies yesterday, has been playing A LOT more and is much more content. Her eye is still a bit lazy and legs a bit stiff but otherwise she is really improving!

Well just wanted to let everyone know how things are going this sunny and bright weekend in Colorado.