Day +23

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

Day +22

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

Day +21

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

Day +19

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

Day +17

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

Day +16

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

Day +15

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

Day +14

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.