Day +100

Day +100 is finally here. We didn't think we would be home before now, but we have been home and back to Minnesota. God is good!! We finished up testing today and we are leaving in the morning and should be home by Tuesday evening. All went well today with the cardiologist and with Dr. Orchard. Rachel had an echocardiogram and ultrasound of her liver an gall bladder. Everything turned out fine. So glad the high ALT's and jaundice issues are medicine related and no gall stones or graft vs. host issues. The clinic was very busy today and the nurse said Monday's they have lots of new patients coming in for their work ups. I guess I already knew this, but it really made an impression on me today as I looked around the room and saw so many looking at their "work up week schedule". I am so thankful that we are now at day 100. Over all Rachel has done very well and we are so very thankful. Dr. Orchard said that we can go to once a week clinic when we get back home so that is an improvement also. Rachel has decided at this point to keep her central line in place until we see how the next few months go. Since she still needs blood about every 3 weeks and will be going to clinic once a week for labs.. having the line in will just make all of that easier.

I forgot to mention that last week physical therapy came on Thursday and Rachel walked 6 times around the kitchen with her walker!!!!! We were excited as it has been since the beginning of September since she used the walker. Today her mobility isn't very good, but we are still encouraged and hoping that she will eventually be able to use her walker instead of the wheelchair.

I had thought that by day +100 the journey would be over, but I feel like we are still waiting to see what the outcome of Rachel's mobility will be and we may not know until February or March how that will turn out. This blog has been a blessing to me during this journey. It started out as a way to keep people informed, but has also been a way for me to get word out so that prayers could be said for whatever was going on with Rachel. I do intend to keep up the blog for a bit longer ...until Feb. clinic visit...Thanks to all of you who have encouraged, prayed and supported us in various ways. Please feel free to continue to keep up with Rachel as we continue in this journey.

Day +98

Tomorrow Rachel and I head out to Minneapolis again. We were going to leave today, but decided to wait. So we will go the whole 10 hrs tomorrow. This time the car will not not be as crowded so I think Rachel will be able to sleep and be more comfortable.
It has not been a good week and Rachel has felt miserable most of the week with nausea and stomach cramps, but she is feeling better today and we are so thankful. Hopefully she will be comfortable as we head back. It looks like they have also scheduled an ultra sound of her liver and gall bladder as well as the other tests that were part of day +100 testing. They scheduled that test because of her high ALT level, and the jaundice that she had this past week. Putting her back on the medicine urisodial seems to have helped.
Yesterday we were at the hospital all day while Rachel got her transfusion. They were administering it very slowly. I am going to talk to the doctor and see if they can speed it up a little if she needs to have it again, because at the BMT clinic it never went in that slowly. We got there at 9:15 and were in the room by 9:45 and then it was almost another hour before they started the meds. We didn't get out of the hospital until about 5:30 pm. The room was nice and the nurses were nice, but boy that was a long time. Thanks to Karen for bringing me lunch!
Will try to update after clinic on Monday.

Day +94

Last weekend was great. Rachel got to church and then on Sunday night we had an auction to raise money for the youth mission trips and Rachel went to that as well. Starting Monday she didn't feel as well, nausea was back and some cramping. She had a clinic appointment on Monday also, and the blood work showed her ALT levels were even higher. They want her to start taking her Ursodiol again. This medicine can be used to treat small gall stones. The doctors think this could be an issue. If her levels are still high on Thursday they may do an ultrasound to check for gall stones. We do not know if they will do that here in town or wait until we return to Minneapolis next week. Rachel did look a little jaundice today so I am a little concerned about that. When I called the nurse she said we will see if the ursodiol helps that over night and check her again in the morning. It is 10:51 pm on Tuesday night and Rachel is still feeling bad. So please continue to pray for her about these things. I will update again tomorrow or Thursday. Thanks everyone.

Day +90

We are now at day 90 almost at the important day 100. We have enjoyed being back home and feeling somewhat back to normal. Rachel's friends have been by to visit and she has enjoyed seeing them. Yesterday I took her to where she works and she got to see her friends there. There are still times of nausea and stomach cramps, but overall she is feeling better We have been getting her labs done twice a week here in Bentonville and her ALT...(shows possible liver damage) is high again. Please pray this would go back down. It seems we go between ALT and the Creatinine (kidney function) being high. She is still on quite a few meds and this can really affect your kidneys and liver.
Rachel's mobility improves some days and then others it is worse again. It is encouraging to see any improvement and we would still appreciate prayers about this as well. Physical therapy will be coming to the house starting on Monday so we hope this will be helpful.
Hope everyone has a great weekend.