Day +51

We are very excited to be on the downward slide of 100 days!!! Jim is back home and we were sad to see him go, but glad he got to stay a little longer due to bad weather and canceled flights. Rachel had a clinic appointment today and it went well. Doctors are concerned about a couple of the meds she is on causing her ALT levels to rise which can cause liver damage. So they have taken her off of this anti fungal drug that she is taking to see if these levels will come down. They have also decreased the nausea drug she is on for the same reason. Her nausea is much better so hopefully she will be able to cut back on this med and it not be an issue. They think she is doing very, very well. The nurse practitioner said she is going to talk to the doctor about the possibility of us being able to leave by the end of October!! We of course are very excited about this possibility, but realize we probably won't know for sure for a few weeks. They of course want this ALT issue resolved and to continue to see improvement, but today was the first time they actually talked about the possibility of a leave date before day 1oo. I do think getting home would be great medicine for Rachel. So we are a little hopeful today. Please keep praying for these issues as well as the mobility issues. Kim our care partner is coming tomorrow night...Tuesday. Next clinic date is Thursday.

Day +48

Today Rachel had an appointment with the neurologist. He is not sure why she is worse at this time, but had several ideas. He thinks part of it has something to do with one of her meds Gengraf..which is a graft vs. host drug. She will be on this medicine until day 180 and then they will slowly decrease her dose. The doctors also think that she is still early in the transplant process and sometimes you see a decline in the disease before things turn around. So we are just in kind of waiting game.
Rachel also had a physical therapy appointment today and the therapist was very helpful in giving us techniques to help Rachel with her transitions...moving from wheelchair to a chair, bed, shower etc. So we keep praying and waiting to see improvements in her mobility. Rachel is feeling good tonight, but had stomach cramps most of the day today. Don't really know why...but glad she is better tonight.
Tomorrow we plan to just enjoy having Jim here we have no appointments. Hope everyone has a good weekend.

Day +46

The last couple of days have been rough. Rachel's mobility is not good. It is hard to understand why it is so bad at this time, when she was better at the time she was released from the hospital. We go back to clinic tomorrow and on Friday we see a neurologist. Please keep praying. Kim, our care partner, came by on Tuesday night and brought us delicious oatmeal chocolate chip cookies. I am posting a picture of Kim and Rachel and also the prayer blanket that was made for Rachel by the Sewing Seeds Youth Ministry of First United Methodist of Mocksville, NC. Such a beautiful quilt, Rachel uses it all of the time. Jim comes tomorrow and it is perfect timing after the last few days.

Prayer Quilt

Kim and Rachel

Day +44

First thing this morning I took Janet to the airport. It was great having someone here for a few days. It helps to make the time pass and to pick up our spirits. Rachel had a clinic appointment today at 9:30. They were running way behind today and we were there for a long time. Lab work came back good. White counts doing well and platelets too. Rachel may need red blood cells at her next visit on Thursday. Doctors still do not know why her shakiness/mobility issues are worse. They still seem to think it is temporary although they do not know for sure. Please keep praying about this. We realize the transplant probably would not make her better, but we were hoping that it would keep her from getting worse...and right now she is worse than when we came here. Rachel did feel nauseated tonight, threw up and then felt better. Doctors aren't too concerned at this point about the nausea. It does appear to be better, but could still be a while before it goes away.
Janet and Jill

Janet and Rachel at the park

Day +42

Rachel woke up on Friday morning(day +41) and felt pretty good...no nausea so we thought we would go out to Mall of America and walk around with our friend Janet who is visiting. We took the wheel chair for Rachel and she did well the whole time we were out which was about 41/2 hrs. We tried to stay away from the crowds and when we ate in the food court we sat away from everyone else. Except for eating Rachel had to keep her mask on the entire time. I think we were all worn out when we got back and Rachel took a nap. Janet and I could have used one, but didn't want to lose anytime by napping. All day and even through the evening Rachel felt well and didn't throw up at all.
Today Saturday Rachel woke up with nausea again. She threw up and then was some better even eating some breakfast a little later. She has slept a lot today and is now a wake a feeling a little better. We are planning on watching a DVD later tonight.

Day +40

Went to clinic today and all blood counts were still good. They drew one last blood culture today and as long as that one is negative then we do not have to go into clinic this weekend! We also saw the neurologist today and he took us off of the other new appetite medicine that Rachel was on because he thinks that might be causing the issue with Rachel's mobility. So praying that after a few days we will see some improvement. Nausea was a bit better this morning..would definitely like to see that continue to improve as well. Rachel is eating much better now although the nutritionist would still like to see her eating and drinking a little more so we are working on that.
I will be leaving in about 1 hour to go to the airport to pick up our friend Janet who is coming from TX. We are so excited to see her!!

Day +39

Today was a short clinic visit. They only drew blood for more cultures. Good news the culture from yesterday came back negative so the doctors decided not to take out the old line and replace it. Rachel is happy about that. We ran a few errands after clinic today and now she is taking a nap. We have used the wheelchair the last couple of days going to and from clinic. She is not getting around well at all. We go to clinic again tomorrow and I am hoping we won't have to go back on the weekend because our friend Janet from Texas is coming to visit. She arrives tomorrow evening. We are excited to see her. It is always so nice when someone comes to visit. We miss everyone so much. We have been here 2 months and have 2 more to go. November 16th is day 100 post transplant....not that we are counting!! :-) I hope to have pictures to post over the weekend.

Day +38

Rachel had another clinic appointment today. She had to get an infusion of magnesium which took about 1 1/2 hrs. They also drew more blood cultures. Yesterdays turned out negative which is good news, but the doctors are thinking they may put in a new line anyway. They are saying because it has taken so long to get a negative culture they are afraid the infection will come back. They are still contemplating on what to do and they will also take into consideration how the next couple of cultures turn out.
Tonight we had John and Cindy, our neighbors, over for ice cream. John had a similar procedure done 9 months ago so he can relate to some of the things Rachel is going through. They are a nice couple and we enjoyed the evening.
Please pray about
the bacteria infection
nausea which is still hanging on mostly in the mornings
shakiness...mobility issues

Day +37

Today was another clinic day. Doctors say that all is going well except for the bacterial infection. They still think it is in the central line. We are using ethanol to flush and lock the line for 24 hrs at a time to try and kill off the bacteria. They are also adjusting the antibiotic so she will be receiving a little stronger dose. If the next couple of blood cultures come back positive Rachel will have her central line taken out and another one put in. Please pray that this gets under control so that won't have to happen. I would hate for her to have to go through that discomfort again.
Please pray for Rachel's spirit which is a little down this week. She has really had a positive attitude through this whole procedure, but lately it has been a little hard. She is improving but wants to be doing even better. I think her spirits would improve if her mobility would improve and she is homesick too.
This week has been good for meals..our friend Jan brought us Mexican Chipotle Saturday night and Kim our care partner brought us some homemade meals tonight..very delicious. God has brought so many wonderful people into our lives since we have been here and we feel very blessed.

Pictures

Rachel's meds

Unit 5 D

The group of doctors, interns and pharmacist that round by the rooms everyday. They first come by just like this and talk to the parent out in the hallway, then later several of the doctors come by again into the room to talk with the patient.

Day +36

Rachel went to Clinic Saturday and Sunday to have more blood cultures drawn. This is the first time since we have been out of the hospital that she had to go to clinic on the weekend. We have another appointment tomorrow. She is feeling pretty good, nausea is improving, mobility is still an issue with some days being better than others but overall better than last week.

Today we had our first big outing...we went to the movies! We went at a 2:00 showing of Julie & Julia. It has been out for over a month so there were not many people in the theatre at that time. Doctor had told us to take a blanket to place in the seat as that is where most of the germs are. We loved the movie..and it was so good to get out and do something "normal".

update Day +34

Well we finally got out of the ER this morning at 5:45am. So it was a long night. We were back at clinic at 11am for another round of antibiotics and another blood draw for a culture. Rachel has actually felt great today..no nausea and a good appetite. Dr. wants us to go back into the clinic tomorrow for another blood draw just to make sure the antibiotics are working. I now have to give the antibiotic through Rachel's central line for 10 days. We should know more by tomorrow

Day + 34 technically

In the ER with Rachel. The doctor on call said bacteria was growing in the blood culture they drew today, so they wanted us to go ahead and come in tonight to get an IV antibiotic and then go to clinic tomorrow for more antibiotic. 2:18am hope they start the antibiotic soon.

Day +33

Praise the Lord Rachel's fever came down on Wed. night so we didn't have to go to the hospital. We went to clinic on Thursday and the labs came back good. Rachel's counts..white, red and platelets are at a normal level. That is great news. She may still need some transfusions in the future, but glad the counts today were good. Appetite is better, nausea better and now the issue is the shakiness that makes it so difficult to walk. Hopefully stopping the dronabinol will help her to get back to how she was pretransplant. Since we have been home tonight her fever has gone back up a little, but not over the 100.3. As I am writing this I got a phone call from the fellow at the hospital and some bacteria is growing in the blood cultures they took from Rachel today. So she wants us to go back to clinic tomorrow for another blood draw and probably antibiotics.

Today Rachel had a surprise waiting for her when we got back to the apartment. The Sewing Seeds youth group from First United Methodist Church of Mocksville, NC had sent her a prayer quilt. A beautiful brightly colored quilt and where all of the knots represent a prayer that was said for Rachel. Thanks to all of the youth and DJ. Will try to post pictures tomorrow.

Day +32 update

Rachel's fever went to 100.6 but then came back down to 100.2. Doctor said we do not need to go into the hospital unless it goes back up to 100.5 sometime in the next 24 hrs. We already have a clinic appointment tomorrow at 11am. So praying the temp stays down tonight.

Day +32

Just a quick update for today. Rachel's walking and shakiness..(ataxia) is not good today. Called clinic this morning and they said to discontinue the dronabinol...the newest med she is on for nausea and appetite in case this medicine is causing her ataxia to worsen. Also she has had a headache today and at this time her temperature is 100.3 if it goes to 100.5 she will be back in the hospital. So please pray about these things. Thanks everyone.

Day +31

This has been a day of ups and downs. We had an absolutely great weekend with Melissa and Meredith. Lots of watching movies, playing games, talking and laughing. Rachel and I were both sad to see them leave this morning and we have been homesick today. Counting down the days until we can go home..currently at day 31 - post transplant so 69 more to go. Yesterday Rachel started having a hard time getting around with her walker. Today we had to use a wheel chair to get her from the car into the clinic. That is very discouraging to her since she had been doing better last week. We are wondering if it is a reaction to the new nausea drug they started her on last Thursday. That drug has really seemed to help with her nausea and appetite so the doctors want to see how she is on Thursday. Her counts were good today and her appetite has increased to the point they are taking her off of TPN (nutrition) to see how she will do.
Prayer requests
She continues to eat and will not have to go back on TPN
Her walking and hand and arm movements will improve
She continues to have no infection or fevers
Her counts stay good

Day + 29

Rachel's last 3 days have been pretty good. She is eating a little more and the nausea is a little better. Still has a rough time in the morning, but the rest of the day seems to go a little better and the new nausea pills seem to be helping and also giving her an appetite. Hoping Rachel's appetite will keep improving and she will be off of the TPN soon. We go back to clinic on Tuesday. We are enjoying our company Melissa and Meredith. Lots of laughter this weekend which has been very good to hear. We have played some games, watched movies and got take out from Chili's thanks to a friend of Melissa's who sent us a gift card. Today Rachel also had a visit from Daniel, a friend from her work, and 2 of his friends. They stayed for a little while this afternoon. They came up here to go to Mall of America and to see Rachel...how nice. Will post more pictures tomorrow.
Rachel and Meredith...sisters

friends

Daniel and Rachel

Day + 26

Good News today!! The test for engraftment came back great. Doctors say she is fully engrafted! Which means the donors bone marrow found its way to Rachel's bone where it is making new cells...the cells that will have the enzyme that Rachel's cells were missing! So this is great news. Today was also Rachel's best day yet. After clinic she was hungry and wanted McDonalds chicken nuggets, so we went to McDonalds. She ate 4 chicken nuggets and about a 1/3 of a small fry, the most she has eaten so far. We ate lunch in the car and she wanted to sit there for a while and just enjoy being out. Then when we got back to the apartment she got on the computer for awhile and watched a movie. She hasn't slept since she woke up this morning and that is a first since transplant. Doctors also put her on a another medicine for nausea which she took as soon as we got in the car after clinic. This one comes from marijuana which gave us a good laugh. It is suppose to help with nausea and increase her appetite. So we are really hoping this works. We go back to clinic tomorrow for a transfusion. Her hemoglobin count was 8.3 and so they decided to go ahead and give her some red blood cells tomorrow. That way we don't have to go back to clinic until Tuesday. Neutrophil count and platelets were both good.
This is a day we have been waiting for....engraftment and a day where she was feeling a definite improvement.
.

Day +24

Rachel has felt better today. Nausea is still the biggest issue, but was more under control today. She wanted to go outside and take a walk so we went and she did very well. She also ate some more solid food today. She had an Ensure, and also a few chicken wings and a little chicken enchiladas.

We are both excited that we will have company this weekend. My friend from Springdale will be coming and she is bringing Meredith!! Rachel and I are both very excited to have company from home.