Day +23

Rachel had a clinic appointment today. Her labs came back good she didn't need any blood products. Her neutrophil count was good also. She will probably need more growth factor meds the next time we go...but that isn't until Thursday!! So glad we are not having to go there everyday. They made some more adjustments on Rachel's nausea meds today hoping this will help her to improve in this area. Nausea still seems to be causing Rachel the most discomfort. If she doesn't see some improvement by next week the doctors may possibly do testing to make sure the nausea isn't a form of graft vs. host. Right now they think it is still just normal for this time post transplant. They expect to have the results of the DNA test by Wed. or at the latest Thursday. This is the test that will show if engraftment has taken place.
Rachel was able to eat a little this afternoon and a little tonight. She had a boneless buffalo chicken wing, and a several bites of chicken enchilada. All of it tasted good and she was able to keep it down.
Prayer for
Nausea
Engraftment
Energy
No infections
No graft vs. Host
Thanks to everyone who has so faithfully been lifting Rachel up in prayer. Doctors say she is doing very well and we know the prayers have made all the difference.

Day +22

Today wasn't the best day for Rachel. Her stomach was upset most of the day. She didn't eat anything solid today even though our care partner Kim brought over homemade chicken enchiladas which were wonderful! Hopefully tomorrow she will feel better and can have some leftovers. I enjoyed the visit with Kim and she stayed and helped me get Rachel's pills lined up for the week which is a pretty big task. It was nice to have another set of eyes checking along with me to make sure it was all correct. We head out to the clinic tomorrow morning.

Day +21

The last couple of days have been pretty good. Rachel is still nauseated quite often, but has been awake a little more than she was at the beginning of the week. She also ate a couple of boneless chicken BBQ wings, thanks to our neighbor John, and she and loved them. Today she had a few meatballs off of a Subway sub sandwich and those tasted good too.
Today our friend Jan came by and bought Mexican food!! It was awesome and I enjoyed visiting with her. Rachel ended up sleeping through the visit, but will hopefully be awake next time Jan comes by. We go back to clinic on Monday and it will have been a week since she got out of the hospital so hoping she will feel like she has improved. I know she feels like everyday is the same and it would be encouraging for her to "feel" better.

Day +19

Today Rachel had a clinic appointment at 10:30. I try not to get the appointments too early in the morning since that is the worst time for Rachel with her nausea. We had another good appointment today with her platelet count at 38 and hemoglobin at 9.1. Her absolute neutrophil count was 1.2 and if it goes below 1.0 patients receive a medicine to make them grow, so they went ahead and gave her that today through her line. Now we don't have to go back to clinic until Monday! The doctors told Rachel she is doing very well and I think that reassured her that feeling tired is just normal at this time. Doctors reminded her she has just gotten out of the hospital and she will improve some every week. They did give her another medicine for nausea and a pain med. They also did a blood draw today for the DNA testing that will show engraftment. She is starting to feel hungry once in a while and the doctors are pleased about that. She is drinking 1 Ensure everyday, juices and tries to take a few bites of something ...today it was a chicken chili, about 4 tsp.
Things for prayer
Pray for engraftment
Pray about nausea
Pray about stomach pain
Pray for food to taste good
On day +17 my friend Mary Sue posted a comment about her visit with us. If you haven't read this you might want to as it will give you another perspective on "The Journey"

Day +17

Well we made it through our first night at the condo and the meds and IV meds went ok. I suppose it will get easier after a few days. Rachel had a clinic appointment this morning at 10:00am. They drew blood for labs and they all came back great. They were so good that we do not even have to go back tomorrow! So she will go back Thursday and will probably need platelets by then. I think Friday is the day that they will do the DNA test to see how well engraftment is going, but it may take as long as a week to get the results.
By the time we got home today Rachel was just wiped out. She napped a good part of the afternoon and still was pretty tired. They want us to start keeping a record of what she eats..the more she starts to eat the less TPN she will need. She drank an Ensure this morning, had 3 8oz apple juices and one 8 oz of orange juice. Also about 3 tsp of chili. She kept all of this down Praise the Lord. Stomach issues are still a big part of her discomfort but hopefully eating even a little bit will help her stomach get use to all of this again. She is walking better than she was a few days ago. She is pretty stable with the walker so keep praying...God is hearing our prayers.
Prayer concerns
nausea
engraftment
stomach pain
energy level

Day +16

Ok...so I am really posting this on day +17 but I want to keep the activities of the day separate. So on day +16 Rachel was discharged from the hospital!!!! We found out at rounds that they were going to go ahead and release her. We were so excited...Rachel just really seemed relieved to get out of there. It was pretty much an all day process to get out. I still had one more class to take on how to administer the TPN(nutrition) IV and we had to wait for pharmacy to fill all of her meds. Then the nurses had to go over the meds with me. Rachel will at some point take over control of her meds, but right now she is too tired and still not feeling great to worry about that stuff. Rachel's hair finally did start falling out so we had them shave her head before we left and she looks real cute her her different head coverings! We left the hospital around 4:30 on Monday...after I had made many trips to the car with all of our stuff. Shortly after we got back to the condo the home health nurse came with our supplies and helped me get the IV meds mixed and helped to get the TPN started. Jan a friend from church here in town came by and helped me haul all of our stuff in and then made a run to the store for us. She also helped out with some things around the condo as I was frantically figuring out all of the meds and getting them prepared in the pillbox for the week. Thanks so much Jan!! After than I set my phone alarm to remind me when to start the next IV med. So...we survived our first night back at the condo. Glad to have Rachel out of the hospital.

Day +15

Rachel started out the day feeling ok, but she ended up throwing up her first round of pills and her stomach was just not right for a good part of the day. She seemed to have less energy than the day before, but did manage by the afternoon to take a walk in the hallway. Rachel and I did play a game of cards this afternoon, and she beat me once again. Her neutrophil count today was 3.3 so we were thrilled about that. She is on a drug which helps the neutrophils to grow and I believe today is her last day for that. When she comes off of that drug they expect her neutrophil count to come down, but that is normal. Rachel started another IV drug in pill form today so that is I think the last one to change over before we get discharged. Then when we go home she will still be receiving 2 IV drugs....pray for me as I take care of the central line issues. Carol I wish you were here!! They are still thinking we will get to go back to the condo sometime by mid week.