Been a while since my last post. Sometimes when I have the time to post it’s just too hard to look back on how much has gone on in the last weeks. Audrey has been fighting so hard over the last 6 since Christmas. We were able to go home for a few days from December 28 to the 30th before returning for another week getting to go home on January 6th. During this time we finally decided that Audrey needed a feeding tube to bring her weight up and allow us to get the oral meds in her that she had been refusing. We were able to stay home for 5 days before finding out that the UTI we knew Audrey had when we went home required another stay in the hospital. This time we only stayed 6 days this time. During her stay one of her aides brought her a selfie stick. She had a good time with it. We were also able to get her 3 day inpatient chemo done while we were in. We were not scheduled to be back in the hospital for the next chemo treatment until Feb 1st.
Audrey really had a hard time being in the hospital during her last stay and really enjoyed being home having tea parties and playing with her kitchen set. We all enjoyed some normally of being home and getting to see the friends a neighbors. When we are home we stay home since it’s cold and flu season we try to stay away from everything as much as possible. As has been the case lately it didn’t last super long. We were still super thankful for the 8 days at home before Audrey’s body needed more support from our hospital family. It took about 5 days for them to get everything back in control and on her scheduled date to start the next round of chemo her platelets were too low. Since the radiation treatments in Houston her platelets have had a hard time coming back at each of her treatments. The good news is we got to go home for theweekend and spend it together. The weather was perfect and let us get outside some and just hanging out and play.
Audrey went back in for counts on February 1st to see if her platelets had come up enough or not. Turned out they hadn’t’ yet which was good for our family logistically since I was traveling in during the middle of the week. They scheduled us to come back on Thursday. A couple more days at home before returning on Thursday to start chemo really raised her spirits. During the last stay the child life team had caught on that Audrey is starting to become upset to come into the hospital. So they decided Audrey needed a schedule and something to look forward to each day to make her stay less stressful. We made counts this last Thursday and returned to our all too usual home away from home. It has seemed that the new plan from child life has kept her spirits up much more during this stay. We have 3 more days before we get to go home on Tuesday.
Audrey has been fighting so hard for so long. Her body has endured so much and continues to amaze us all at how strong she can be. This treatment week is week 30 of her treatment schedule that is currently 54 weeks long. We have been doing this for 33 weeks total and with all the small delays and traveling to Houston and back it’s pretty amazing how close to the schedule we have managed to maintain. For the last couple of months Melissa and I have had a huge decision that we needed to make about the next cycle of treatment. We had differing opinions from 2 incredible doctors. One suggested we remove the next 5 treatments of chemo as it has shown to cause liver damage with small gain against keeping Audrey’s type of cancer away. The other doctor said we can manage the liver damage if it happens and anything more we can do even if minimal to keep the cancer away is worth doing. So after asking a lot of questions and pushing back really hard we have decided to keep the next 5 treatments in place and monitor her liver closely. Not really a decision a parent ever thinks they will have to make but at least it’s decided and we can start pushing forward. Audrey has another MRI coming up the last week of February that will give us another view of what’s going on inside and how effective her treatment has been.
Whether you are rooting for the Panthers or the Broncos today I hope your team wins. I don’t have a dog in this fight. It’s been fun to watch and just for a few hours take our mind off the season we are in.