Rachel's Excellent Adventure

Happy New Year

2009-12-31T21:51:00.000-08:00

The Wunderle family Marty, Jill, Jim, Chad, Meredith and Rachel.

Rachel and nephew Eli

Kids decorating the tree.

Rachel heading out to a Christmas party.

We hope all of you have had a blessed Christmas season and happy new year. We had a wonderful time with family and felt especially glad this year to be all together for this special time. We had a little scare on Christmas Eve. Rachel started running a fever and it went to 100.6. So I had to call the doctor about 6:30pm. He said instead of going to the emergency room he would call in a strong antibiotic for Rachel. We were very relieved that we would not have to be going to the ER on Christmas Eve. It took awhile to find a pharmacy that was open at that time on Christmas Eve, but we finally did. During this time the weather was turning into a wintry mix, so needless to say I was glad when Jim and I arrived home. Rachel never did run a fever again after 11pm on Christmas Eve. It did continue to snow and we had a white Christmas! It was very beautiful and will be a special memory.

Some of the things we are looking forward to and praying about this new year for Rachel are...

getting her clinic schedule down to once a week

getting her central line taken out

coming off of the gengraf medication

most of all mobility improving

Your prayers this past year have meant so much to us. We thank you for taking this journey with us. I will probably make 2-3 more posts on this blog and plan to end it with our trip to Minnesota in February. For those not on Facebook I have included some pictures from Christmas. Wishing all of you a very happy new year!

Clinic appointment

2009-12-11T14:28:00.000-08:00

Rachel had a clinic appointment this past Tuesday(a week ago). We saw Dr. Schaefer and Dana. They have been great to work with and we are so pleased that they agreed to follow Rachel here locally. They are on top of things and we feel that Rachel is continuing to receive excellent care. Next week she will have to go in for a blood transfusion. Her red blood count was low, as has been the cycle about every 3-4 weeks. So next Wed. will be the day. Last time it took most of the day so we will see how it goes this time. I also heard from Teresa, Dr. Orchard's nurse in MN. All test for day 100 came back great. The engrafment test showed 93 percent, which was down from the 99 percent it was previously, but she said this is not a problem for Rachel's disease. It could even be 70 percent, but they just want it stable. That is all of the news for the moment.

I never did post this when I first wrote it I was still trying to upload pictures. I do not know what the problem is, but I will go ahead and update.
Rachel did go in for the transfusion. This time she got to go to the transfusion center and it went much smoother and faster than the first time she received blood here. So the plan will be go get all blood she needs done there. Rachel has been feeling well enough to get out and do some Christmas shopping and visiting with friends. I believe a Christmas party is on the agenda for her tonight. She woke up during the night with a terrible headache and some nausea so I hope she will feel better when she wakes up.
Brittney, Stephen and Eli will be coming here on Christmas Eve and staying though the weekend. We are excited about seeing them and sharing the Christmas holiday with us all together....we are blessed.

We hope everyone is enjoying this Christmas season.

Day + 120

2009-12-05T22:18:00.000-08:00

Sorry it has been so long since I have made a post. Things are going pretty well since we have returned from Minnesota after day +100 testing. Rachel's recovery from the transplant is going well and she is feeling pretty good most days. She still has a day here or there when she feels nauseated, but it is controllable and not too bad. She gets to church and a few other outings a week. Rachel will be taking online classes next semester and has already gotten signed up for those.
We had a nice Thanksgiving at home this year. What a blessing it was to be together. On Friday we drove to Texas to see Brittney, Stephen and Eli. We had such a nice visit with them and we so enjoyed spending time with Eli.
On Saturday Rachel went to the mall with a friend and got a start on her Christmas shopping. She had a great time! Today Sunday we went to church and then put up our Christmas tree. I posted a few pics of Rachel with Eli and the kids putting ornaments on the tree. I really am enjoying all of this as I know in a few years they will all be grown.
Well I was not able to post the pictures tonight. Blogger will not let me. I will try again tomorrow.

Day +100

2009-11-16T15:52:00.000-08:00

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

2009-11-14T16:30:00.001-08:00

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

2009-11-10T20:40:00.000-08:00

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

2009-11-06T05:34:00.000-08:00

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.

Day +84

2009-10-31T19:52:00.001-07:00

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

2009-10-28T09:56:00.000-07:00

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

2009-10-24T18:33:00.000-07:00

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

2009-10-22T17:28:00.000-07:00

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

2009-10-19T16:43:00.000-07:00

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

2009-10-18T19:10:00.000-07:00

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

2009-10-15T17:45:00.000-07:00

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

2009-10-12T13:41:00.000-07:00

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

2009-10-09T21:42:00.000-07:00

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

2009-10-05T18:01:00.000-07:00

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

2009-10-02T18:58:00.000-07:00

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.

Day +51

2009-09-28T20:27:00.001-07:00

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

2009-09-25T19:41:00.000-07:00

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

2009-09-23T19:57:00.000-07:00

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

2009-09-21T21:34:00.001-07:00

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

2009-09-19T11:55:00.000-07:00

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

2009-09-17T16:44:00.000-07:00

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

2009-09-16T13:41:00.000-07:00

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

2009-09-15T20:47:00.000-07:00

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

2009-09-14T19:22:00.000-07:00

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

2009-09-13T20:10:00.000-07:00

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

2009-09-13T19:16:00.000-07:00

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

2009-09-11T20:49:00.000-07:00

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

2009-09-11T00:21:00.000-07:00

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

2009-09-10T21:24:00.000-07:00

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

2009-09-09T20:48:00.000-07:00

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

2009-09-09T17:40:00.000-07:00

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

2009-09-08T17:00:00.000-07:00

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

2009-09-06T21:32:00.001-07:00

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

2009-09-03T19:05:00.000-07:00

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

2009-09-01T19:20:00.000-07:00

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.

Day +23

2009-08-31T18:05:00.000-07:00

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

2009-08-30T21:16:00.000-07:00

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

2009-08-29T21:40:00.000-07:00

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

2009-08-27T19:38:00.000-07:00

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

2009-08-25T21:29:00.000-07:00

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

2009-08-25T11:51:00.002-07:00

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

2009-08-23T20:27:00.000-07:00

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.

Day +14

2009-08-22T19:12:00.001-07:00

Today started about 7am with Rachel saying she couldn't breath well. She was stopped up and felt like she couldn't get a good breath. She was also having pain in her stomach and got nauseated. She was getting enough oxygen but she just felt like she couldn't get a good breath. She was getting platelets, but has received those before and never had this reaction. So they did give her benedryl and she started getting better after about 30 min. Her ANC (absolute neutrophil count) was 1.5 so up from yesterday and doctors say overall still doing very well. Doctors said it is not unusual for the temps to go up and down at this time in transplant. Still if it goes to 100.5 they would treat it like an infection even if it isn't a true infection.

Our good friend Mary Sue came from Virginia and got to the hospital about 10:30am. So we had a good time talking and talking. Played a few trivia questions and then Rachel fell asleep for a while. After she woke up we went for a walk outside. When we went outside they actually were able to stop the IV and detach from her so we didn't have to take the IV poll. That was nice too. Rachel also walked in the hall today.
Since we have company we ordered Dominos...they deliver to the unit we are on...hippee!! Rachel at a few bites of a pasta bowl and a few bites of pizza!! So far she still feels good and no nausea!! Praise the Lord.

Rachel and Mary Sue

Rachel says....she is smiling with her eyes!!

Update to prayer request Day +13

2009-08-21T20:43:00.000-07:00

Temp is down to 99.3 so I am relieved. Thanks for the prayers...we do not need an infection right now.

Prayer Request Day +13

2009-08-21T19:03:00.000-07:00

Rachel's temp is 100.2 if it goes up to 100.5 it will be considered an infection and that is not good. Please pray her temp comes back down. Thanks everyone.

Day +13

2009-08-21T07:43:00.000-07:00

Today has been an awesome day! Rachel took a walk in the hall and the doctors were all amazed at how fast she walked (used her walker) and the stamina she had. She still had difficulty turning, but her walking was good. The doctors say she is doing so well that they are putting her on more oral meds and the goal is for her to be out of the hospital by beginning to middle of next week!! They seem to think her counts will continue to rise and want her to get out as soon as possible. We will still be coming in to the clinic most everyday for labs and they say most patients get readmitted at some point for fever or other issues, but Rachel is planning NOT to come back! We will still have to stay in this Minneapolis area until day 100, which is November 16th. We are praising God for all of the answered prayers, we definitely give him the glory. Please continue to pray
no fevers
absolute neutrophil counts continue to rise
engraftment
eating
no shakiness

Day +12

2009-08-20T12:17:00.000-07:00

Praise the Lord Rachel's white count was 1 today!! The absolute neutrophil count was 0.8 and this is the count that has to be 0.5 for 3 days to come out of the room and walk the hall. It has to be 2.5 to get discharged from the hospital. Rachel is feeling about the same today as yesterday and most symptoms are the same. Today fresh baked chocolate cookies were brought to the unit they were warm and smelled so good, so Rachel tried one, but did not like it. Things still do not taste good, and that seems to be the biggest problem with eating at the moment. She actually was hungry at dinner time and wanted chili so I went to a deli within walking distance and picked some up. She ate a little of it and thought it tasted good, but then it didn't settle well with her stomach, disappointing.
I went to a class today on line care and how to give her one of the meds, mucomyst that she will still be receiving by IV when discharged. Lots of information, but I guess I will get the hang of it once I have to start doing it all of the time. The doctors are also taking Rachel off of some of the meds she is on and are saying in the next few days they will switch some of the IV meds to pill form. That is encouraging as well.
We are watching episodes of The Nanny at the moment...we love those they are so funny and laughing is a good way to spend time in the hospital.

Day +11

2009-08-19T10:43:00.001-07:00

Good news today. Rachel's white blood counts went from 0.3 yesterday to 0.7 today!! If she stays at 0.5 or above for the next 2 days she will be able to walk in the hallway with a mask on. The nurse coordinator actually came in and is scheduling me for a class so I will know how to administer Rachel's IV meds in case she is still on some when we go back to the condo. They said most patients go back with at least the TBN...which is the nutrition. Going back to the condo could still be a few weeks away, but I was encouraged when she said they schedule these once they see this kind of jump in the wbc.
Rachel still has mouth and throat sores, but I have been glad the medicine is keeping Rachel comfortable. No nausea in the last few days. Now if the shaky and jerky movements get under control that would be great and if something would taste good.
Thanks for all of the prayers everyone...keep praying.

Day +10

2009-08-18T21:36:00.000-07:00

Not much change in the way Rachel was feeling today. Her white count was up to a 0.3 so I was happy about that, but otherwise she felt about the same. Shakiness still an issue. She slept most of the day, but did wake up around 7pm and we watched a movie together.
Earlier today our care partner came by for a visit. Rachel slept right up till the end of the visit, but I enjoyed talking with her. Guess that is about it for today.

Day +9

2009-08-17T19:00:00.000-07:00

Rachel was having trouble today with her shakiness and jerky movements. These are symptoms of the disease, but yesterday and especially today she was much, much worse. These jerky movements were even waking her up from sleep. So of course it was causing issues whenever she got out of the bed for any reason. The doctors seem to think this stems from the pain meds she is taking, but she can't come off of those yet because of the mouth and throat sores. So they gave her a medicine that she had been taking for nausea that helps with the shakiness and the medicine did help with the myoclonus movements during her sleep and with some of the shakiness when standing and walking. Still hard. The doctors also are going to give her a higher dose of Keppra..she was already taking this pre-transplant. They think this may help as well. This has been a very draining day and had Rachel a little down. This is what she is trying to prevent in the future and now to have it here in the present. She now knows this should just be a temporary set back and she should, once off pain meds and starts gaining her strength, get back to where she was before. On a good note her white blood count was 0.2

Day +8

2009-08-16T21:09:00.001-07:00

Nausea was even better today than yesterday. Mouth a bit worse, but it is manageable with the pain meds. She can still swallow her pills so that is awesome. Please pray about her shaky, jerky movements. Very difficult for her to get around and even turn over in the bed. Also she jerks some even when just lying in the bed...which is annoying. Doctors say this is temporary and she should start improving in a few weeks. She didn't need any blood products today and her white count was still a 0.1.
A friend came today from the local church that we had previously visited. She bought me Taco Bell which was awesome. Rachel did wake up for some of the visit and I am sure she enjoyed seeing someone besides me 24-7! Except for the jerky movements it was a pretty good day.

Day +7

2009-08-15T20:15:00.000-07:00

Today Rachel's nausea was a little better. She is on pain meds for the sores and that could go on for at least another week. When she is awake the pain is under control and so is the nausea. So all in all a better day, still sleeping a lot and very shaky in her movements. She had to receive platelets early this morning because they were down at the 4am labs. They tested her white count today for the first time and it was a 0.1 it has to be at 0.5 for 3 days and then she can go out of the room and walk in the hallway with a mask. The doctors said this will probably not happen for a couple more weeks. It is normal not to see much of a count at this time. During the next few weeks the white count will go up and down and will not be steady, so they say. So far things are progressing well, no major set backs and we are praising God for that.
Prayer concerns:
nausea stays under control
mouth and throat sores stay under control
that she does not develop any fevers
white count continues to rise

Day +6

2009-08-14T16:39:00.000-07:00

Today is day +6, Rachel has a few more mouth & throat sores. They have put her on a low dose of continuous morphine and she also has a pump so she can get some extra when she needs it. Still feeling nauseated, and those meds are the same. She had a day about like yesterday, but she did get online for a few minutes this afternoon and managed to open a couple of packages she received and she said she was feeling better at the moment. No blood products were needed today as hemoglobin and platelet counts were good. Tomorrow they will test for white blood cells I don't think they expect to see much, but day +7 is the first day they test for them.

Day +5

2009-08-13T20:29:00.002-07:00

Today Rachel didn't feel good most of the day. They have started her on a morphine pump so she can self medicate to a certain point. Doctors are trying different drugs to see what works best to keep her feeling the most comfortable. They wanted her to try morphine for her stomach issues thinking some of the hurt she feels in her stomach might be caused by sores in her stomach. She is still getting nausea med every 6 hrs and then she can have others as needed. Still only a few mouth sores. Praying that part doesn't get any worse.
Tonight we did get a visit from a nice couple that are friends with a friend of mine in Tx. We had a good time getting to know each other and they prayed with us. It is awesome to see God working through his people. He sends what we need in fellowship, prayers and support.

Day +4

2009-08-12T20:05:00.000-07:00

Rachel started out the day feeling better. She tried to eat breakfast and wanted toast, but said it didn't taste good. She felt pretty good through the morning. She is getting a medicine for nausea every 6 hrs and that seems to be helping. She can also get other meds for nausea when needed. PT came this morning and she worked with them for about 30 min., she also got a shower. Then she napped for a while. This afternoon we played some cards.....I was taking a beating in that game. Then all of the sudden she didn't feel well and threw up. She had to get extra meds...napped some more and then tonight felt like eating dinner and had some chili...I know it doesn't sound like the best thing, but it sounded good to her and she actually ate some and kept it down. She had to get extra meds tonight before bed for nausea, but still a much better day than yesterday.
She didn't need any transfusions today. The doctors did look in her mouth and said she has a few sores, but they say she is doing very well ..... keep praying we believe that is making all the difference. Also pray that she doesn't get any fevers or infections.

Day +3

2009-08-11T17:16:00.000-07:00

The days go by, but slowly for Rachel. She still feels nauseated and was throwing up. She is sleeping a lot so I am happy about that. She says her mouth has a weird feeling...but no sores yet. She is retaining water from all of the fluids she is receiving so they are giving her meds for that. Her hemoglobin levels and platelets were good today so she didn't need any blood products.

Jim will be leaving first thing in the morning. We have already said goodbye as he will be leaving very early. We are very sad to see him go. It doesn't feel right us all not being together, but we know this is just for a period of time. Still it is hard. Pray for his safety on the way back home.

Once again be praying that the new marrow is finding it's way and starting to make new cells...engraftment.

Day +2

2009-08-10T17:15:00.000-07:00

Today follows the pattern of the last few days for Rachel. Not a lot of energy and feeling nauseated. She has watched some tv and did get on the computer for a little while. Tonight she was feeling a bit better and really wanted a chocolate shake. Doctors have said she can eat whatever she wants so I bought her a chocolate shake, but let's just say that it didn't set well. Also while she was drinking it she mentioned that her throat hurt. Praying she isn't getting the mouth sores...although most patients do. Her hemoglobin count was low today so she had to receive some blood. This is normal during this part of the transplant process.
We are enjoying having Jim (Dad) here. He can always make us laugh and that is a good thing. I also got to make a run to the store today to pick up a few things...always nice to get out of the hospital for a few minutes.
Just want to thank everyone for the prayers...and also to say thanks to those who are helping out with the other 3 kids at home while Jim is here and while I am away. God is really working through his people and working things out in unexpected ways..we praise Him for that.

Day +1

2009-08-09T21:20:00.001-07:00

So glad that we are in the + days. All chemo and radiation behind. Now we wait..and wait..it takes time for the new marrow to start making cells. Today was an ok day. Rachel was nauseated some of them time, but no throwing up. She even had some soup for dinner. The meds did seem to help keep it under control. She is still weak, and slept alot.
Some things to pray about:
Pray for engraftment
Pray that the mouth sores that most patients get will not be too bad or not at all. These are caused by one of the chemos Rachel received. They do not show up until around the 6 day or so.
Fevers can also show up around this time as well as the hair loss.
Pray she has no graft vs host issues.
For nausea to subside.
Pray that she gets no infections.

Update day 0

2009-08-08T20:37:00.000-07:00

Today started out pretty good after a rough night last night(transplant). Rachel woke up and ate some cereal and then napped for a little while. Then she got up and had a shower, but was wiped out after that. Which seems pretty normal for all she has been through. Just a little after that she started to feel nauseated again and for the rest of the day has been on meds for nausea. She has not thrown up today so that is good, but she hasn't felt well. All in all it was better than some days in the past. She did do exercises with PT and watched some of the Nanny eposides on DVD. She is sleeping now and hopefully I will be soon.

Day 0 Transplant Day

2009-08-08T07:11:00.001-07:00

Yesterday we got the word that transplant was to be at 10pm last night, however it didn't actually occur until 12:15 am on August 8, 2009. The nurses came in and I took some pictures of the marrow. They said some marrow is almost clear, some kind of brown and some red...and this one was red. When the marrow goes in it is not put through the IV pump like the other meds. It goes in her central line, but the rate that is goes in is not monitored, it is just a gravity thing. They let it go in fast. The nurses said there can be some temporary side effects from this ...high blood pressure is one of them. I got a few pictures right at the beginning and just about a minute after the last picture things got intense. All of the sudden Rachel said she was having trouble breathing. Her nose was stopped up and even through her mouth she felt like she couldn't breathe well. Then she said her chest hurt....she rated the pain 8 out of 10 with 10 being the worst. Her blood pressure went up. That continued for the rest of the transplant...which took between 15-18 min. During this time she was also nauseated and was throwing up. At this point the doctor was in the room and they were prepared to give her oxygen if she needed it. He was asking her all kinds of questions. Finally when the transplant was over the chest pain started to subside, but she then got bad stomach cramps and she was doubled over with those. She was able to get some morphine to help with those and was then able to sleep.

Another thought about the donor. I forgot to mention in the Blessing Ceremony that there was a paragraph about the donor as well and I want to copy what it said:

"We are thankful for Rachel's donor: for the love, compassion and courage to share with Rachel the life-giving cells that are deep within their body. This act of loving-kindness will be remembered and carried within our hearts. When the marrow has been harvested, may the soreness that they may feel ease quickly and may their own marrow be swiftly replenished."

Please remember the donor as she is recovering from this wonderful thing she has done for Rachel

The marrow

The nurses getting everything ready

Starting the transplant

Day -1

2009-08-07T17:47:00.000-07:00

Today didn't start out very well. Rachel had an upset stomach from the start and was very weak. So she got some meds for the nausea and went back to sleep until about 12:00. At which point she woke up and was soon sick on her stomach again. The blessing was suppose to be at 1:00, but was was throwing up at that point so they decided to come back after more meds had a chance to work. At 1:45 the chaplain came as well as a friend from a local church, and another staff member that has been very helpful. The bulletin from the blessing was nice and had the scriptures and readings typed inside that were used for the blessing. Each of us there had a part to read and then we took some oil and rubbed that on her and said a prayer. Short and nice.

About 2:30 we went down for the radiation. That only took about 20 min. When we got back Rachel opened up some of her birthday presents she received from family and friends from church.

The pink prayer shawl in the picture was made by volunteers and was waiting for Rachel when she got back from the radiation. Then she started feeling bad again and received more meds and went to sleep. We found out this afternoon that they are going to do the transplant tonight at 10pm. The marrow got here sooner than expected so they are going to go ahead and do this. I will take pictures nurses say most people do this...after all it is what we have been waiting for.

Day -2

2009-08-06T16:14:00.000-07:00

Today Rachel had Melphalan, which was her last dose of chemo!! Glad to have this part of the protocol over with. Actually today was better than yesterday. Rachel has not thrown up today and ate a piece of toast this morning and then about 4oz of chicken noodle soup this afternoon and more soup as I write this. She is still on anti-nausea meds and sleeps a lot, but she is feeling better than yesterday. She did exercises this morning and physical therapy came and worked with her so she was pretty exhausted after all of that. The doctors say she is doing good. Tomorrow is her total body irradiation.

The donor will have her marrow harvested tomorrow. She is doing such a selfless thing and we are praising God for this woman. Please continue to pray for her.

Tomorrow the chaplain is going to do a blessing for Rachel's transplant which will be Saturday. I will fill you in on those details tomorrow.

Day -3

2009-08-05T20:11:00.000-07:00

Today was much the same as the last few days. Not much to comment on. They did try a new nausea medicine tonight that is suppose to work well for chemo patients and she did sit in a chair for about 30 minutes, but got sick again. So we head on to tomorrow...with her last dose of chemo! Pray that Rachel can be comfortable, and that her body is doing what it needs to do so it will accept the new marrow. Continue to pray for the donor.

Day -4

2009-08-04T17:25:00.000-07:00

This Tuesday morning started out with the promise of being a better day, but after a shower and some exercises Rachel was vomiting and back in the bed. The doctors here are very good at trying to find the best meds/doses that work for Rachel. They really want the patients to be as comfortable as possible. So once again I say sleeping is a blessing and she has slept most of the past few days.
As you remember to pray for Rachel please pray for the donor that is giving their marrow on Friday. What an awesome thing this person is doing for someone they don't even know. Besides all of the tests they have gone through, they will also have this surgical procedure done, so please lift this person up to the Father. Tomorrow is the last day of the chemo Clofarabine. Thursday starts the chemo Melphalan for one day and the total body irradiation on Friday and transplant day on Saturday.

Day -5

2009-08-03T18:58:00.000-07:00

Today was another not so good day. Rachel woke up sick to her stomach. . If she can sleep she does ok, but when she is awake she is nauseated. She did manage to get up and take a shower and then do some pt exercises early this morning in about 30 minutes, but after that it was all downhill. As I said yesterday, sleep is a good thing.

Thanks again for your prayers, notes and cards.

Day -6

2009-08-02T21:14:00.001-07:00

First thing this morning Rachel didn't feel that great, but was able to get a shower and get some of her physical therapy exercises done before she started to feel really bad again which was around 9:30am. She had her second dose of Clofarabine and will receive 3 more doses of this particular chemo. Most of the day she has either been nauseated and vomiting or sleeping. Sleeping is a good thing. Tonight they started her on TPN..total parenteral nutrition which goes into her central line. Most all patients going through a transplant get this at some point when they stop eating. She can still eat anything she wants there are no restrictions.....but right not she doesn't want anything. She had another dose of nausea medicine around 10:00pm. Hopefully she will get a good nights sleep.

Update Day -7

2009-08-01T21:32:00.000-07:00

The rest of the day went much the same. They did give her morphine for her headache and that seemed to help. They have been giving her meds for the nausea and that has seemed to be working. Thankfully she has been sleeping a lot.

Day -7

2009-08-01T08:38:00.000-07:00

Today starts a different chemo in her protocol, Clofarabine. She is nauseated and has vomited w/blood. They have given her something extra for the nausea so hopefully that will help. They believe the blood my be from sores in her throat which is to be expected at some point, but she isn't in pain from that at this time. She is resting at the moment so that is good. Sorry to be graphic, but these are things for prayer. Will update later if any change.

Day -8

2009-07-31T11:18:00.000-07:00

Yesterday went well. Rachel didn't even get a rash from the Campath. They had given her extra Benadryl in pre-meds and that really seemed to help. A friend from a church in town came by to visit yesterday evening for a little while. We really enjoyed that.
Day -8 Friday
When Rachel woke up this morning she didn't have as much energy as she has been having in the past and not much of an appetite, although she did eat a breakfast bar. The nurse started her last dose of Campath around 10am....5 days down! The Benadryl was making her sleepy so she went back to sleep for a couple of hours. When she woke up she ate lunch and now is working on her exercises. She still is kind of dragging today, but that is to be expected. She is constantly on a drug for nausea, slowly administered through the line around the clock. Seems to be working. The doctors think she is doing great!
Tomorrow she starts on a different chemo Clofarabine for 5 days. Keep on praying. We love you!

Day -10

2009-07-29T16:16:00.000-07:00

Last night Rachel woke up with a bad headache and a slight fever. Tylenol was tried first but didn't help so then they gave her the strong stuff. She slept in this morning until around 9:00am. She received the 3rd dose of Campath around 10am. Each dose takes about 2 hours from start to finish. She did good only having trouble with the rash again. She has been as active as possible getting her PT(physical therapy) exercises done and staying out of the bed. PT says it is better to be in the chair as much as possible and so Rachel is making a point to do so especially while she is feeling pretty good. All in all a very good day. Thanks for all of the prayers we know that is getting us through.

Day -11

2009-07-28T12:41:00.000-07:00

Rachel actually started feeling better last night and she had a late dinner around 9:15pm. She slept through the night as well. This morning she woke up feeling sore around the area where they put her central line in, but otherwise felt pretty good. She ate breakfast and then around 10am they started the second dose of Campath. She did fine through this dose with the only side effect being a rash, which could have come from the antibiotic. They gave her Benedryl and she is feel better.

Physical and occupational therapy have been in and she has done some exercises. She is feeling very shaky and out of control with many of her movements and so after her shower it felt good to get back in bed for a while. Physical therapy wants her to sit up in a chair as much as possible while she is feeling good, so after her dressing change for the line, she will probably sit up in a chair and watch TV for a while. At this point she cannot leave the room unless absolutely necessary for an x-ray and then only with a mask. It is very important that she not be exposed to any germs or viruses. The Chemo is basically trying to get rid of her immune system so that it will be ready to receive the marrow, so she is at a high risk for illness and infection. The hospital is very strict about allowing certain thing into her room as well, like plants and flowers.

Our care partner came to see us today. We had nice visit. She is pretty knowledgeable about this procedure because her son had one many years ago. We are very fortunate to have her and some friends from a local church that have been so helpful to us. The Care Partners organization also gives new patients a bag full of things and a cute stuffed animal. Here is a picture.
This picture is of the 3 stuff animals that brighten our room. Aren't they cute? Rachel has had her Panda(not pictured) since she was born thanks to Aunt Vikki, and he came here as well. He needed to be washed in order for Rachel to be able to be around him now so our care partner took Panda home to wash him and then he will be back to join the pack! Thanks care partner for the goodies!

Day -12 (updated)

2009-07-27T12:51:00.000-07:00

UPDATED:

Rachel has finished her first round of Campath, and has had a spike in fever. That is to be expected, but they will do a chest x-ray and also are giving antibiotics. She is achy and has a bad headache. She has also had one round of nausea. They gave her something like Benadryl to keep her from getting a rash/hives, which is another side affect from the Chemo so she is sleeping at the moment. Please keep praying that she will not feel the affects of all the harsh meds she is getting and that she will be able to sleep through some of the pain/nausea.

Some of you have asked about how to get in touch with us. We can now use our cell phones in the hospital room (yea!) and you can also email us at followrachelsjourney@yahoo.com. This is also posted in the sidebar of this blog.

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ORIGINAL POST:

We arrived this morning around 7am and got Rachel admitted into the hospital. Then we went up to the the bone marrow transplant unit(BMT) on the 5th floor so we could put our things in the room and they could get a height and weight on Rachel. Then it was back down to the 2nd floor where we were to wait until they called Rachel back to get her central line. They called her back to the prep room where they had to put an IV in for the pain meds and they got it right in the first time! Then they took her to the OR to put in the central line. During that time I went and got my parent pass ordered. This is a card that has the parent's picture and it activates the doors to the unit so I can come and go in and out of the unit easily. Any other visitors have to pick up the phone for access into the unit.

At this moment Rachel is receiving meds to help prevent side effects from the Campath-1H that she will be receiving in about 15 minutes. This is the first drug in the 12 day protocol leading up to transplant day which is day 0. So today is -12 in the process. Many people have asked me if Rachel can receive flowers and the answer is no flowers or live plants and also no latex balloons. The mylar kind of balloon is fine. There seem to be no other restrictions on what she can receive. Here are a few pictures of the room. We did get one of the larger rooms.

Cheese Cake Factory

2009-07-26T20:25:00.002-07:00

For most of the weekend Rachel wasn't feeling that great so we didn't do too much. We did get to Walmart and on Sunday we went to the Cheesecake Factory. We had never been there before and cheesecake is Rachel's favorite dessert so that sounded like the perfect place to go. The rest of the evening we have been getting everything lined up for the hospital tomorrow. We will need to check in at around 7 as she has to be in the Gold Room at 8am.

Date Changes...

2009-07-24T10:15:00.000-07:00

Thursday Rachel had an appointment at the Gillette Children's Hospital in St. Paul. This was at a gait/motion clinic. They took video of her walking and turning to have a pre-transplant marker. This will help them determine if the transplant was successful in stopping the progression of the disorder. Rachel still had a headache from the spinal tap so we went back to the clinic where they gave her a caffeine IV. She felt a little better for a while, but the headache came back in the evening.

Today, Friday, she is feeling better so far. Rachel was suppose to get the central line put in today, but they changed that to Monday and then she will be admitted to the hospital at that time. Looks like actual transplant will be on August 8th. Marrow will be drawn from the donor on the 7th, but it won't get to the hospital in time for Rachel to receive it until the 8th. Today we are headed to Rochester to the Mayo clinic to see the neurologist Rachel has been seeing there.

Monday and Tuesday

2009-07-22T09:06:00.000-07:00

Monday Rachel had just a few appointments. One was with the social worker. She gave us a tour of the bone marrow transplant unit as well as information regarding parking, and general information about staying there. There is a washer/dryer unit on the floor and a shower, and a kitchen all of which are shared by the caregivers. I can get a parking pass for the month which will be a big help. At the moment I am paying anywhere from 7-10 dollars a day. The second appointment was with Cardiology. It was pretty short and we were done with the day by 12:30. So we decided to go back to the condo and then head out to Walnut Grove ,Minnesota...one of the places Laura Ingalls Wilder lived. They have a museum there and the have land markers of where their dugout house was and Plum creek is still there. Rachel and I are fans of the TV show and books so we enjoyed this little trip.

Tuesday was another story. Rachel had a pulmonary function test then a neurology appointment. We also knew they had scheduled a lumbar puncture....spinal tap, which I was a little concerned about, but that took a back seat when we got there and found out they had scheduled a bone marrow biopsy. Rachel is a trooper and when it took 3 tries to get an IV started she never moaned or winced....much braver than me. So when she was in pain during the bone marrow biopsy I knew she was in pain. They had to try a second time because they couldn't get enough out the first time in the spot they were in. They did give her some meds to try and help with the pain, but it seems to me they should have done this procedure with her more sedated. The spinal tap didn't go easy either as they had to do that twice as well, but it was still easier than the bone marrow procedure. So by the time we got home Rachel was tired and nauseated. She slept for a while and then got up, still felt bad and slept some more and then went to bed. This morning (Wed) she isn't as nauseated, but has a really bad headache. Probably from the spinal tap. She is laying in a room at the clinic at the moment 12:30pm waiting for our last appointment of the day which is the exit conference where we will hear the results of all the tests and if everything turned out fine Rachel will sign all of the consent forms.

Weekend Recap

2009-07-20T18:34:00.000-07:00

On Thursday, July 16th Rachel had about a 3 hour appointment with Neuropsychologist. She has seen these doctors before and really likes them. In the afternoon we met with Care Partners which is a volunteer program that provides support for children and adult bone marrow transplant patients. They have family volunteers which act as a best friend...someone that might support you like a friend would even though you are far from home. They also have unit volunteers that will be working on that floor of the hospital. They can play games or come in and sit with the patient while the caregiver takes a break. Sounds like a good program and they have been doing this at this hospital for 25 yrs. We also found out that you can't use cell phones in these particular hospital rooms (something to do with the equipment.) We can use computers but they said the Internet connection in these rooms aren't very good.

Friday we didn't have any appointments so we slept in and then did some cleaning around the condo. Later we took a trip to Walmart...of course. :) In celebration of Rachel's birthday, which is on transplant day (Aug. 7), we ate at Chili's. On Saturday we went to Mall of America. We walked around until we were beat and then headed back to the condo. We have been going to a coffee shop on most days to use the wireless Internet connection there since my phone seems to be having trouble here. Now it appears we do have connection at the condo through my phone so we are happy about that.

On Sunday we visited a nice local church that has been in touch with us. They are a very friendly group and we enjoyed a good time of worship with them. Our neighbors go to the same church and invited us to lunch. That was a great time of fellowship. Since Rachel will be admitted to the hospital on Sunday, this was pretty much our last free weekend for a while so we tried to have some fun and I think we succeeded. Here are some pictures from the Mall of America.

3 Days Down...

2009-07-16T08:17:00.000-07:00

Yesterday we met with the bone marrow transplant nurse coordinator to talk about all of the things we can expect during this procedure. We discussed the numerous side affects as well as the types of chemo and different drugs that will be used. We also went over the time line of when things are scheduled to happen. The central line will be put in on Friday July 24th. She will be admitted to the hospital on Sunday July 26, and then she will start the Chemo that same day. Rachel will receive 5 days of one kind of Chemo, 5 days of another, 1 day of another ,and then on the 12th day of treatment she will receive radiation. Friday August 7 is scheduled as transplant day. Yesterday, Rachel also had an echo cardiogram and was seen by the ophthalmology department. Another busy day behind us.

Blessing Rings!

2009-07-14T19:11:00.000-07:00

On Monday Rachel had several appointments at the bone marrow transplant clinic for labs and a physical. The doctor went over all the aspects of what to expect during and after her treatment. She also had a chest x-ray and an EKG. We had a consultation about the central line (still not exactly sure when that will go in) and a 2hr MRI. Several of the appointments ran late, which meant no lunch until very late in the day. Thank heaven for our friends who gave us snacks and a tote which I took with us that day. We have a very nice neighbor who gave us very helpful directions to and from the hospital. I am so thankful because this is a big city!

Today Rachel had a nerve conduction study. This was some what uncomfortable for her because they gave her little electric shocks to see how her muscles responded. I'm sure I would have whined and moaned but Rachel was quiet through the whole process. Then we had a break for about 3 hours. The only other appointment today was with the radiation department for a consultation and measurements. She will be receiving total body radiation.

These pictures are of us holding our Blessing Rings. These cute rings with ribbons were given to us by a friend of mine. Monday night Rachel and I sat down and put all of our cards and notes with encouragements and prayers on the rings. This such an awesome idea and we really felt the love. These pictures are from my phone so please excuse the quality. :)

Rachel's Blessing Ring:

My Blessing Ring:

You can see part of the apartment in the background. It is nice and seems to be in a decent part of town, which is definitely a blessing.

This is the view from the back patio. Aren't the trees pretty? It is about 4pm as I am writing and Rachel and I are watching a bunny hop in the back yard.

Hair, Hair, Hair!

2009-07-11T23:00:00.000-07:00

Since Rachel will be undergoing chemotherapy and radiation very soon we thought it was a great time to play with her hair a bit and get a new short do! Here are the pics!

Before:
After:

Isn't it so cute?!?! Very sophisticated! :)

We are leaving for Minnesota early tomorrow morning and have lots of appointments with different doctors next week. Monday and Tuesday are especially full with appointments and the other days we will be trying to get settled. I will post as many updates as I can. I will be staying in a condo that is owned by a missionary who is currently overseas. Rachel will be with me for the first week or two, and then she will be in the hospital.

More updates coming soon!

The Beginning

2009-07-10T20:00:00.000-07:00

Rachel has a disease, Sialidosis (Type I), that is very rare and affects about 1 in 4 million live births. This is an inherited disease…passed down by a gene from each parent. Rachel started showing symptoms around the age of 16. She had trouble walking, specifically starting and stopping, and started shaking some. At first we thought she was just going through a clumsy stage of life, but the symptoms persisted and got worse. We went to our family doctor who sent her to a local neurologist. He ran tests and could find nothing wrong. He sent us to Children’s Hospital in Little Rock. Every time we went they would run tests and send us home. We would wait for results and then go back and repeat the pattern. After a couple of years and no diagnosis we decided to go to the Mayo clinic. They were able to run more tests and put everything together to find out she has Sialidosis.

This is a disease that continues to progress and there is no cure. At this point Rachel is 20 yrs old and uses a walker to go everywhere. Ataxia, a neurological dysfunction that causes lack of coordination of muscle movement, is also a symptom. This causes her to shake and makes it hard for her to write, cut her food, get on escalators, or do other things involving fine and gross motor skills. Myoclonus movements (jerky movements) are also another symptom that would continue to get worse. One example would be like when you are sleeping and all of the sudden your body jerks. But this can happen at any time for Rachel. Seizures are another symptom. Right now all we can do is treat these symptoms with medication but there is no assurance of how long this will last or how far it will progress.

Through talking with her neurologist we found out about Bone Marrow Transplant and through much research and prayer Rachel has decided this is what she wants to try. The best outcome is that this is will stop the progression of this disease. There is always a chance that there would be improvement, and ultimately this is what they always hope to see, but the doctors aren't very optimistic about this. In fact there is a chance that this will not work at all and the disease could continue its course . This procedure has been performed for several other metabolic diseases, but it still a very new procedure. She will be receiving Chemo and radiation before the actual transplant to suppress her immune system. The transplant is scheduled for Aug.7, which is Rachel's 21st birthday. From this time through the actual first 100 days of transplant will be a critical time. We are praying that her body will accept the new marrow instead of rejecting it, which can have serious consequences.

Rachel and I (Jill) will be leaving on Sunday (7/12/09) for Minnesota and we expect to be there at least through November if everything goes perfectly. Through some missionary friends I have found a place to stay, that is close to the hospital and is a very reasonable rent. This has been a growing closer to God experience for the whole family...so much of this is out of our control. We would appreciate your prayers and good thoughts as we go through this journey. We will try to keep this blog as up to date as possible so check back often!