Day +84

Sally and Rachel

First of all let me say again we are so glad to be home. There is just no way to put into words how much we missed our family and friends. As you know Wed. was a rough day, but since then things have been getting better. Thursday we met with the doctor that will be following up with Rachel's care now that we are home. His name is Dr. Schaefer and we were very impressed. His nurse is great too and we are so glad to be connected with a doctor here that we really like.

Friday started out well with Rachel having some improvement in her mobility. Saturday has been a great day also. We are always so excited to see any improvement and we keep praying that she will continue to see progress. Tonight Halloween...Rachel had 3 friends over to eat pizza and watch a movie. Slowly, but surely she is feeling better and getting back to a somewhat normal life. We are planning to go to church tomorrow, however we are still careful about getting out and about too much as this is a time of year with a lot of sickness. Rachel's immune system is not fully back to normal and this is going to take time. Please continue to pray that she has no fevers or infections, and for continued improvement in her mobility. Also about her hundred day tests which we have to go back to Minneapolis for on Nov. 16-17.

Day +81

Flowers from Johnny and Mary Sue

Banner Jim and the kids made for us

Balloons from our church New Hope Fellowship

Our friend Jan and Rachel

Our friends and neighbors John and Cindy

It felt like a long ride even thought it was only about 7 hrs. from Des Moines. Rachel got a little uncomfortable and a little nauseated on the trip, but nothing major. We arrived home around 3 pm yesterday and it is wonderful to be here. Rachel had a balloon bouquet sent to her from our church and then some flowers from our friends Johnny and Mary Sue. Both are beautiful! Jim and the kids had made a banner for our arrival as well. Our friend Karen made a delicious meal her famous poppy seed chicken...yum! We both got a good nights sleep...so nice to sleep in our own beds!

This morning...Wed. has started out kind of rough. Rachel was in the process of getting a shower and had what we think was a seizure. When I talked to the neurologist in Minnesota and he wasn't sure from my description if that is what it was or not. The doctor still thinks the medication she is on is correct and doesn't want to change anything yet. Still very scary and not the way we want to start our first day back. We have an appointment with the doctors here tomorrow.

Above are pictures from the last week.

Day +79

Weekend Days +76-77
Rachel and I have been working to get things ready to go home. We have accumulated stuff since we have been here...imagine that....and I was afraid it would not all fit in the car so we packed up some boxes and sent them on ahead. One of the things we will be bringing back is the wheelchair since Rachel's mobility is not any better at the moment. Still the doctors think it will improve after she gets off her medicine Gengraf..which is a graft vs. host medicine. That will not be until sometime in February.

Friday was another cold day here and we had a mix of rain and snow most of the day. Our friend Jan, from Southtown Baptist, came over for dinner. I cooked chili...seemed appropriate for the weather. Then on Saturday we went out for a late lunch with our neighbors John and Cindy who also go to Southtown Baptist. A weekend of little goodbyes to people who have been so kind and helpful to us while we have been here. Pictures to come in a later post.

Monday-
Clinic went well Rachel, received red blood cells, and also growth factor for her neutrophil count. Everything else was looking good and we did get the word that we could go HOME!! So tonight we are in a hotel in Des Moines, Iowa and should be home by tomorrow (Tuesday) afternoon. Thanks so much to John, Jan and Kim for helping us get everything....well almost everything loaded in the car. Had to leave a few things behind that we will get when we return on Nov. 16th. Thursday we have our first appointment with the doctors in Fayetteville that will be taking over Rachel's care. Please be in prayer about that....we are thrilled to be going home...a little scary to leave the doctors we have so depended on for the last 3 1/2 months.
Continue to pray about Rachel's mobility as well. More updates to come in the next few days.

Day +75

Rachel and Erica the nurse practitioner we saw the most in clinic. She got us through some hard days.

Rachel and Teresa who is the BMT Nurse Coordinator Had many conversations with her before we ever got here. Always so helpful and kind.

Today is day +75 and things are going pretty good, but not without little bumps in the road. Rachel's creatinine level (shows kidney functioning) was still up too high so she had to receive fluids and we will have to give her some at home as well. It will go through her central line, once a day, like some of the other IV meds she has received Praise the Lord this doesn't stop us from being able to leave for home after our Monday appointment as long as other things continue to go well. Erica...the nurse practitioner also wants Rachel to come in on Sunday morning for more labs. Mostly checking the hemoglobin level. Every 2-3 weeks Rachel has been needing to receive red blood cells and they are going down again so Erica wants to make sure that Rachel doesn't need to receive blood when we first get home. Rachel is a bit disappointed that we have to add the fluids into the mix, but we are both very glad that she can still go home.

Over the weekend we plan to have some friends over and go out to eat with our neighbors as we say goodbye. How God has blessed us with Christian friends since we have been here. We will see them again as we will need to return to Minneapolis many times over the next few years.

Please continue to pray that her labs stay where they need to be, that Rachel will not have any infections or viruses. Also pray for things to go well with the new doctors. It is very comfortable with these doctors at this point and now we start all over again with new doctors. We know all of this is so out of our control, but once again we remind ourselves that God is in control and that is what gets us through. Thanks again for all of your support.

Day +72

Rachel and Dr. Orchard

Rachel's clinic visit went well today. Her ALT was down lower than before so that was very good news. Her creatinine was down a little, but still up from where they want it to be. They think that is due to the Gengraft. For this particular medicine they do a blood test every week to check the levels. It was high so they they lowered the amount she will take and they think that will correct this problem. Dr. Orchard will be on hospital rotations next week so today was our last visit with him until we come back to Minnesota for day 100 tests. They made a few other changes to her medications...they are always looking for meds that she can cut back on or no longer needs. Can't say enough good things about Dr. Orchard. He from the beginning has been excellent to work with. Even before we knew for sure we were going to do this procedure he would talk with me on the phone and answer any questions I had and never seemed in a hurry.

Rachel is feeling so much better than in past weeks and we give God the glory for all He has done. Once again we thank all of you who have been praying..and going on this journey with us. Please pray that things continue to go well this week with no infections or viruses so that we will be able to head for home on Monday the 26. Our plan at this time is to arrive home on Tuesday afternoon Oct. 27th.

Day +71

Rachel and Amy at Red Lobster. Rachel is wearing on the cute hats that our friend Kittie made for her.

Our friend Amy came to see us this weekend. We had a great time visiting and catching up. She brought a Monopoly Card game for us to play. It was such fun and much faster than playing the board game. Who would have thought..Monopoly a card game?

A few weeks ago Kim (our care partner) gave Rachel a wig. It needed to be trimmed to fit Rachel's face and Amy was able to take care of that for her! Thanks Amy! She wore the wig today along with a hat that Kittie from church made for her. She looked so cute and I meant to take a picture, but forgot! I will try to remember the next time she wears it.

Sunday we had dinner with Kim and her family. It was so nice to met her husband and 2 boys. As I have mentioned before, Kim's son Eric had a bone marrow transplant about 15 yrs ago. He is doing so well and it was nice to meet him after hearing so much about him from Kim. He received his transplant back in the early days of metabolic transplants. Kim has been a perfect care partner for us because she has been where we are.

Tomorrow Rachel has a clinic appointment with Dr. Orchard praying that the ALT levels are still down and the creatinine levels are down as well. Will give another update tomorrow night.

Day +68

When we woke up this morning it was snowing again. This time no accumulation, and it changed to rain within a couple of hours. Rachel had a physical therapy appointment this morning and then a clinic appointment. Praise the Lord her ALT levels were down, in fact they were able to put her back on fluconazole it is an anti-fungal medication which she needs at this point in the process. Her creatinine levels(has to do with kidney function) were up so Rachel had to receive IV fluids today. If they don't go down by Monday then we may have to give her IV fluids at the apartment. Please pray that this does not happen. On the positive side we did get back the results from her second engraftment test and she is still fully engrafted 100%. That is a real praise and we are so thankful for this news.
Our friend Amy is coming into town tomorrow for a visit. We are excited to see her. Then hopefully next weekend will be our last one here. We will have to come back up for day 100 tests, but it will be worth it to get home early.

Day +65

Great news, great news.....the Dr. Orchard is getting everything set in place for us to be able to leave before the end of the month. Rachel will have an appointment on Monday Oct. 26 and so we will plan to leave early on Tuesday Oct. 27th and head for Arkansas. We should be walking through our door at home by that evening. We are so excited!! Today's appointment went well. She does have to go back tomorrow for red blood cells, but otherwise things are going good. Her ALT has come down...they would like to see it come down some more, but it is better. Praise God for that! Her absolute neutrophil count is good, but the doctor said that her immune system is still weak. She still does not have many of the specific cells she needs to fight off infection, but the doctor says that this is still normal for this stage post transplant. The nurse coordinator, Teresa, said that it is very unusual for patients to leave before day 100, but that Rachel has just done so well. We are so very thankful for all of the prayers...we know that God is getting us through this "adventure."
Things to pray for:
ALT to continue to go down.
Rachel stays well..no virus or infections
Jim and the kids continue to do well at home.
labs and tests continue to come back with good results. She was also tested for engraftment again last week and we should know the results on Thursday.

Day +62

This has been a rough week for Rachel. When we went to clinic on Monday her ALT was still high. I have had some people ask about ALT so I thought I would post a site that explains what it is http://www.raysahelian.com/alt.html. The doctors made some adjustments to her meds and she has been very nauseated again this week. We went to clinic on Thursday and the ALT was even higher..please pray these levels go down. Today -Friday Rachel is feeling a little better. She didn't throw up today so that is good. It has been kind of a frustrating week, but we hope the worst is behind us.
The good news it that Brittney has come for a visit. Always good medicine to have family or friends come and visit. We are having fun talking, laughing, and watching movies...we might even get a picture posted this weekend. Hope everyone enjoys their weekend.

Day +58

Rachel and I did make it to church on Sunday and we enjoyed being in a worship service again. The people of Southtown are so welcoming. Other than that it was a pretty quiet weekend. The weather is getting cooler with highs mostly in the 50's...which is about perfect for me, but Rachel is freezing. Rachel had a clinic appointment today and it was an overall good visit. Her ALT is still running high and they have readjusted her meds again to try and get this to come down. We talked to the doctor today about the possibility of leaving at the end of October. We didn't get a definite answer but he did say he would consider it. When they were looking at the med list he said since they are getting us ready to leave that he thinks we should stop the mucomyst, which is the IV med she gets 3 times a day...so after Wed. we do not have to do that anymore....YAY!!
We are still very hopeful that we will get to leave at the end of October, but if we don't we are still so thankful that things have gone as well as they have. We don't yet know the out come of the disease...if she will be able to get her mobility back. We are still hopefully and so are the doctors, but she is alive, doing well and engraftment did take place. That is not the case for everyone that goes through this procedure so we keep pressing on and praising God for where we are.
Prayer requests:
ALT goes down
No infections
Mobility improvement
Getting home

Day 55

Yesterday Rachel had a clinic appointment. Labs were pretty good and the ALT is coming down which is what the doctors wanted to see. Thanks for your prayers! They are waiting until Monday to decide if they will put her back on the anti-fungal meds in pill form or if they will have to go ahead and put her on the IV meds. We are hoping she will be able to go back to the pill form. The nurse practitioner we are seeing will be going back on hospital rotation next week, but she is going to talk to Dr. Orchard about us possibly leaving at the end of Oct. So...we will see. We are hopeful, but realize even if we get a yes or maybe, it could change. So we keep praying for things to continue to go well. The mobility issue appears at this point to be something that will be a struggle until after we get back home. The doctors do think she will improve and so Rachel does exercises to keep her strength up and we hope to see improvement as the months go by or at least when she comes off of the Gengraf.
Our care partner Kim came by today and we went to a mall just down the street and walked around a bit and also had lunch. It was a nice afternoon and we always enjoy visiting with Kim.
We are planning on going to church on Sunday so we are looking forward to that. Hope everyone has a wonderful weekend.