Trip 18 to Primary Children's!

A conversation with Grandma Kathy:
Avery: I don't like Cancer, I don't like Chemo and I don't like Coyotes!
Grandma: Why don't you like Coyotes?
Avery: Because they kill my Grandpa's baby calves.
So I start writing a new post, but by the time I actually post... it's old news. I used to stay up way late updating & would NOT get enough sleep, but now that I'm up every few hours with my newborn and I know I'm only going to get a couple hours of quality sleep so I go to bed a lot sooner. Kyle I seen your comment about taking me up on being a guest blogger and I think you should:) You could be the video specialist. You have a lot of cute videos of Avery on your phone and I have thought of doing a video with her singing along with Taylor Swift and Diana. She loves to listen to music for hours:) If anyone ever hears of Taylor coming somewhere close let me know. She would love to go.
This has been the roughest week out of this phase so far.(Chemo week Aug. 11th-22nd) On a positive note, her tough little body is still handling all the medicine better then I'd imagined. She has been more nauseous this time & threw up the first few days after chemo. The worst part was getting mouth sores from the chemo, which made it so hard to eat. It started about 4 days after she had chemo. She started complaining about her throat hurting & I figured she'd gotten a sore throat. Then she cried that it hurt to swallow and when blood come up from her mouth we realized it must be mouth sores. She didn’t want to open her mouth much because she said it hurt. We did finally see sores on her cheek and under her tongue she had a bad sore. We knew they must be down her throat also. One night she wanted bread sticks so bad. She tried to eat them, but cried that it hurt too bad. I felt so bad and cried with her wishing that it was my mouth that had sores in them. I could use not eating for a few days not you. I cut the bottom of the bread stick to just keep the softest part and cut it into little pieces, but she just got more upset that it hurt so bad to eat. She still is drinking which was the big concern for the oncologist. We kept giving you pain medicine and the magic mouth wash that you swallow is suppose to help. Today (22nd) you started feeling a little relief in your mouth and then boom it’s time for another hit of the awful chemo.

Today, (Monday, Aug. 22nd) we are driving home from our long 12 hour day. We even tried to make it shorter and came last night and stayed at Rachelle’s, so we didn’t have to drive up at 5:00 in the morning. Home health came yesterday (Aug 21st) and missed again on the first try to access your port. Your dollars for every poke from Grandma Kathy is really adding up. Sure wish they would get the same person to come every time & make it easier on you. We did make counts ANC was 1400 and platelets was 117. These are the two numbers they are concerned with for this phase. (ANC has to be over 750 and platelets over 75) By the time we got the blood results around 3:30, got everyone’s bags packed, stopped to drop off Kelsi’s stuff and say goodbye, we didn’t make it to Rachelle’s house until 10:00 p.m., Luckily Rachelle let the boys stay awake until we got there so you were super excited to see him.

We left Rachelle’s house at 9:00 a.m. for clinic. No siblings are allowed in clinic so we decided to have Rachelle keep the baby which we so appreciated. Avery started out with stomach pain and had a rough day, which means mom/dad had a rough day too. Her stomach was really bothering her and she actually was asking for food today. However, because on day 31 of this phase she had a lumbar puncture, she couldn't have any food until after her procedure. Due to the mouth sores, the oncologist was debating to not give her the 2nd chemo, Methotrexate and only give her the dose of Vincristine. They accelerate the dose of Methotrexate every time and don’t want her sores (infection) in her mouth to get worse & to prevent her from eating less then she is now. They decided to not accelerate the dose this time, but to give her the same dose as last time minus 20%. We didn't have time for chemo and had to be down to the RTU by 11:30 for her LP. You haven't had one for a few months & you seemed to be a bit nervous this time. You already was asking to go home and your stomach was still hurting. The procedure doesn't take long, but it takes you awhile to wake up. Then we had to go back up to the 4th floor for chemo. Although you had wanted to eat all that day, once you actually could you no longer had an appetite. You threw up in mom's hand before we could grab you a bucket. The nurses ordered you some pain medicine, but you refused to take it. After the chemo was finished we were able to leave. You feel right to sleep driving to pick up brother Carson. At Rachelle's you perked up and even ate some pudding. We had been trying to get you to drink lots of water, because they say this helps flush the chemo out of your body & we have found it really does help. However, you would not drink for us. We let you play for a bit with your cousins Bridger & Landon. We were so happy Rachelle was willing to watch Carson & he took a bottle from her with no problem. Such a blessing. You slep tuntil we were at Beaver & woke up in such a good mood, however still won't drink water. I think you enjoy causing frustration with your parents. We know this helps you do better & will help you to not get such awful mouth sores, but we can't convince you. We got home at 10:00 from a long day. We counted and this was our number 18 trip to Salt Lake since you were diagnosed. That seems like so many, especially since we didn't go at all for a month when your counts weren't high enough. That's more trips in a short few months then I have taken in years. One more trip up there in 10 days on this phase, then on to the next Delayed Intensification.

What it takes to access her port.
Darn...they missed again. You're not exciting about another poke.
Before we left for the hospital we snapped a picture of everyone wearing their Team Avery Bravery shirts.
Cousins: Landon, Bridger & Whitney
We see this multi-color horse every time we go to PCMC.
First time, we've ever seen a dog at clinic. I guess they come around the hospital with volunteers or if the children ask for them.
Avery getting her Chemo-Vincristine
When I walked in the room, Avery was face down. They said she woke up for a minute then turned like this. The nurse was the same one that Avery had gotten really mad at the time she was on steroids and yelled at everyone. I asked her if she remembered. Once I reminded her she did, but before that she wouldn't have even remembered. She said she felt bad because when she turned around and started laughing that's when Avery got real mad. We had a good laugh about it before Avery woke up of course. She gave Avery her blood pressure cuff, and oxygen mask to take home because she loves to play doctor now. She loves to give others IV and poke them:)