Devree has had a bad evening, night and morning. She started out with a bad fall last night. The nurse and the assistant nurse tried to help her on the comode and she fell between the bed and the comode and she scraped her nose and hurt her lip and jammed her thumb so that she will loose the nail. The doctor had to check her all out and she was in a lot of pain. When she cried, she actually had about 4 tears from her right eye. It had created a couple tears throughout the day and I was amazed. But when she really had a cry it did make a few tears! She was in a lot of pain with her thumb and face and I asked her if we could say another prayer for her and she said yes. I said a prayer and she was able to rest and even endure the next part of the night that was probably worse.
Around 1am they decided she wasn't urinating enough and she had to get a catheter. The nurse tried 2 times and was unsuccessful. Then they called in the big gun nurses and after another hard 1/2 hour they finally got the catheter in. So Devree was in enough pain and asked why they didn't put her under for that procedure. I think she would have liked to be saved the embarrassment. Then at 7 am she got herself on the comode and she urinated. I told the nurse and the assistant nurse to be really careful because of her falling last night and not more than a few minutes and Devree falls again and scrapes up her right side because the assistant nurse had gotten her up to weigh her! Now they took out the catheter because she is urinating with it in and you are not supposed to be able to do that! Now the nurse from B clinic that doesn't ever know how to say Devree's name, (we call her tatoo wrist) asked me if I think Devree is getting worse at being able to stand and walk. I told her "Absolutely". She asked if I thought it was the chemo and I said "Yes". I just want this course to be done and not have these harsh chemicals in Devree anymore. Last night I wished again that I could be Devree and give her a reprieve from all of this for a little while. Tomorrow cannot come soon enough. Tomorrow is the day of rest, which means "No Mo CHEMO!". She will get her stem cells on Thursday and get to go back to the Target House.
Our prayers are working inspite of all of the horrible side affects. Having her eye making tears is wonderful to behold. I will be happy for that.
Tuesday, July 28, 2009
Monday, July 27, 2009
Not Soon enough Sunday
We recieved some socks from Grandma Rice, the Neumiesters and from Emma Wilcox. Devree is really liking Emma's flourescent ones.
Devree's hemoglobin was a little low so her chemo was not started in the morning like usual. Our favorite nurse Kim told us Friday that they would wait and give Devree some blood before the chemo started. Well Devree got all of her nausea drugs in the morning and her blood pressure was low. Then the nurse realized that she couldn't give the chemo and ordered the blood. It finally came at 1pm. Then by 8pm Devree was finally given her chemo. She has never done the "v" word so much. We did get some drugs all day, but not the big push of anti-nausea drugs like usual. So Devree has been throwing up black for the last few times. She threw up all night long and we still had to do the urinating too. She has had a roungh night, so today I hope they let her sleep. I don't think that she will get her second dose of chemo till tonight because of the late start yesterday. This is the time she really has to urinate every 2 hours so she won't get the bladder problems. This chemo is cumulative and I am so glad that this is her last round. If she can't urinate every 2 hours than they will put in a catheter. As bad as she is feeling, I don't think she cares.
I want to paint her windows with "Home means Nevada", "Last course" "Devree is Done". I have to wait till a child life specialist comes with a key to open the cupboard to get the window paints.
To end off with something funny. Todd had to call me and tell me that Shay squirted cheese into his belly button and let the dog lick it out. This was after being gone a week at Scout camp. Shay's comment was "My bellybutton needed a good lint cleaning!" Say it with me now. "Eeeeeeewwwwwwww!"
Devree's hemoglobin was a little low so her chemo was not started in the morning like usual. Our favorite nurse Kim told us Friday that they would wait and give Devree some blood before the chemo started. Well Devree got all of her nausea drugs in the morning and her blood pressure was low. Then the nurse realized that she couldn't give the chemo and ordered the blood. It finally came at 1pm. Then by 8pm Devree was finally given her chemo. She has never done the "v" word so much. We did get some drugs all day, but not the big push of anti-nausea drugs like usual. So Devree has been throwing up black for the last few times. She threw up all night long and we still had to do the urinating too. She has had a roungh night, so today I hope they let her sleep. I don't think that she will get her second dose of chemo till tonight because of the late start yesterday. This is the time she really has to urinate every 2 hours so she won't get the bladder problems. This chemo is cumulative and I am so glad that this is her last round. If she can't urinate every 2 hours than they will put in a catheter. As bad as she is feeling, I don't think she cares.
I want to paint her windows with "Home means Nevada", "Last course" "Devree is Done". I have to wait till a child life specialist comes with a key to open the cupboard to get the window paints.
To end off with something funny. Todd had to call me and tell me that Shay squirted cheese into his belly button and let the dog lick it out. This was after being gone a week at Scout camp. Shay's comment was "My bellybutton needed a good lint cleaning!" Say it with me now. "Eeeeeeewwwwwwww!"
Friday, July 24, 2009
More Socks
Becca we have received your 3 unmatched socks. You and your grandmother sent great socks. Thanks for the other goodies too.
We are hoping today is a much better day. I tried to get Devree to take Finnergen the first moment she woke up to get a handle on the nausea. Yesterday when Devree weighed she weighed the least amount since she got here. Too much v wording. We changed the andancetron back to Kytril in the medicine room. I talked with Kim, our favorite nurse and we discussed how Devree's body will work for awhile with one anti-nausea drug then it doesn't work well. So back to Kytril and she had a better night and no V wording this morning. She was not a happy camper all day yesterday. She has been having PT everyday and she just didn't feel well yesterday. She told everyone that I broke the back of the Sequoia so now she can't go in a wheelchair. The back broke again. This is the second time it has broken. After she gets all of her drugs in the medicine room and then she gets a wheelchair because she is a fall risk.
Yesterday while Devree was going to be hours and hours in the medicine room, I went shopping. I had to get myself a new pair of exercise shoes because I ripped out the in-soles in my shoes so Devree could wear her braces. She needs a bigger size and my shoes were bigger. It was a good thing because she shouldn't be in her braces forever and I needed a better pair. Target had the perfect pair for $7. Yea! I did have something funny happen to me while I was shopping. I was trying to get gas at a very crowded gas station. This lady in a fancy sportscar, zipped out in front of me and around me to go to the last gas pump available. I pulled up behind and saw that in her impolite haste, she had pulled her car up on the wrong side. I saw that a car had pulled out just across on the right side for her. I motioned to her to the right pump for her and backed up and let her pull her sportscar to the right pump. She was a little sheepish but she went to the right pump.
So here is a Shana quote for today. It always pays to be polite. You never know what kind of idiot you portray to others when you are impolite and in a hurry.
We are hoping today is a much better day. I tried to get Devree to take Finnergen the first moment she woke up to get a handle on the nausea. Yesterday when Devree weighed she weighed the least amount since she got here. Too much v wording. We changed the andancetron back to Kytril in the medicine room. I talked with Kim, our favorite nurse and we discussed how Devree's body will work for awhile with one anti-nausea drug then it doesn't work well. So back to Kytril and she had a better night and no V wording this morning. She was not a happy camper all day yesterday. She has been having PT everyday and she just didn't feel well yesterday. She told everyone that I broke the back of the Sequoia so now she can't go in a wheelchair. The back broke again. This is the second time it has broken. After she gets all of her drugs in the medicine room and then she gets a wheelchair because she is a fall risk.
Yesterday while Devree was going to be hours and hours in the medicine room, I went shopping. I had to get myself a new pair of exercise shoes because I ripped out the in-soles in my shoes so Devree could wear her braces. She needs a bigger size and my shoes were bigger. It was a good thing because she shouldn't be in her braces forever and I needed a better pair. Target had the perfect pair for $7. Yea! I did have something funny happen to me while I was shopping. I was trying to get gas at a very crowded gas station. This lady in a fancy sportscar, zipped out in front of me and around me to go to the last gas pump available. I pulled up behind and saw that in her impolite haste, she had pulled her car up on the wrong side. I saw that a car had pulled out just across on the right side for her. I motioned to her to the right pump for her and backed up and let her pull her sportscar to the right pump. She was a little sheepish but she went to the right pump.
So here is a Shana quote for today. It always pays to be polite. You never know what kind of idiot you portray to others when you are impolite and in a hurry.
Thursday, July 23, 2009
Thursday starting with V word
At 6am I was awakened by Devree. Her nausea keeps getting worse. She started out vomitting like every 3 days and then everyday and now twice a day. This saddens both of us because this means even the IV drugs are not working. This week is supposed to be her best "feel good" week because it is the farthest out from her chemo drugs. I think that is what we will ask of those who would like. Next Sunday is Fast Sunday and we could fast that Devree gets her appetite back and will start to eat. She won't even try anything when I offer so many different things. I think if she would put something in her stomach it would settle it.
On to better things. We had 7 Young Women and 3 leaders come to our apartment last night. I gave them a tour of the Target House and I had made chocolate chip bar cookies. We packed all the ladies in and sat around and talked. We didn't have room or time to play any games. I had my camera ready to take a picture and I forgot to take the picture. It was a packed living room. I know this blog gets boring when we don't have pictures. Sorry I forgot.
We have received 2 more entries for knee socks. I overheard Devree tell one of the nurses which pair she liked the best. You will have to wait and see. Yesterday was "Super Hero Day" at the hospital. They have groups called "Volunteens" where teens come and help patients do crafts. They had big peices of felt that the kids decorated and then they hung around their necks like capes. I was tempted to show them how to cut the felt smaller at the neck and more like a cape, because they basically had rectangles and felt doesn't fold or move. So the kids looked like they were wearing signs on their backs, not capes. But in honor of the day, Devree wore her "Spiderman" socks and everyone OOOHED and AAAAHEd over her socks. Devree has to use her walker more, because the back door on our Sequoia broke again. I can only roll down the window and I cannot put the wheelchair in. Here another hardship will be good for Devree. Although she talked me into finding her a wheelchair at noon because she was tired from PT and walking all over the place.
Here's another great book that the Huesser's sent us. "The Broken Heart" by Bruce C. Hafen. It is about "Applying the Atonement to LIfe's Experiences". It has helped me get through some rough times out here.
Have a great Thursday!
On to better things. We had 7 Young Women and 3 leaders come to our apartment last night. I gave them a tour of the Target House and I had made chocolate chip bar cookies. We packed all the ladies in and sat around and talked. We didn't have room or time to play any games. I had my camera ready to take a picture and I forgot to take the picture. It was a packed living room. I know this blog gets boring when we don't have pictures. Sorry I forgot.
We have received 2 more entries for knee socks. I overheard Devree tell one of the nurses which pair she liked the best. You will have to wait and see. Yesterday was "Super Hero Day" at the hospital. They have groups called "Volunteens" where teens come and help patients do crafts. They had big peices of felt that the kids decorated and then they hung around their necks like capes. I was tempted to show them how to cut the felt smaller at the neck and more like a cape, because they basically had rectangles and felt doesn't fold or move. So the kids looked like they were wearing signs on their backs, not capes. But in honor of the day, Devree wore her "Spiderman" socks and everyone OOOHED and AAAAHEd over her socks. Devree has to use her walker more, because the back door on our Sequoia broke again. I can only roll down the window and I cannot put the wheelchair in. Here another hardship will be good for Devree. Although she talked me into finding her a wheelchair at noon because she was tired from PT and walking all over the place.
Here's another great book that the Huesser's sent us. "The Broken Heart" by Bruce C. Hafen. It is about "Applying the Atonement to LIfe's Experiences". It has helped me get through some rough times out here.
Have a great Thursday!
Wednesday, July 22, 2009
Young Women Wednesday!
There are only a few young women and leaders left in Germantown. So we invited them to come to the Target House tonight. We are excited to entertain. I think I will show them how to play "Cut throat UNO". This is a game I learned on my mission and it was bad because my companion had got all of the elders to gang up on me, but it will be good practice for Devree, because she needs to think fast and use her motor skills to act fast too!
We have a very busy long day today. I think we will both take a nap before the young women come. We have physical therapy, an ultrasound to check on her bladder which has resolved finally. She talks to the psychologist and the school program to get her classes ready for Dayton High School. Then we talk with the nutritionist and get bawled out again. Devree did eat 2 grapes last night. Then we have to go to the medicine room with our 24 hour drugs and TPN.
We did find out for sure that the last round of chemo starts Saturday night. YEA! Then we are DONE!!!! Then it is working hard to the road back to complete recovery. We will be given GCSF (drug to stimulate cell growth) and then they will depend on Devree to get her numbers up to go home. We will have to unplug the TPN, still get her last MRI to see if everything is clean, get her double lines pulled and back to "E" clinic and HOME!!!! So we will be home by the end of August. I can't get too excited because the time will go by slow then. But I want to pack the apartment and be ready TODAY! Of course it won't be today.
LOVE ALL OF YOU! and thanks for your prayers.
Shana
We have a very busy long day today. I think we will both take a nap before the young women come. We have physical therapy, an ultrasound to check on her bladder which has resolved finally. She talks to the psychologist and the school program to get her classes ready for Dayton High School. Then we talk with the nutritionist and get bawled out again. Devree did eat 2 grapes last night. Then we have to go to the medicine room with our 24 hour drugs and TPN.
We did find out for sure that the last round of chemo starts Saturday night. YEA! Then we are DONE!!!! Then it is working hard to the road back to complete recovery. We will be given GCSF (drug to stimulate cell growth) and then they will depend on Devree to get her numbers up to go home. We will have to unplug the TPN, still get her last MRI to see if everything is clean, get her double lines pulled and back to "E" clinic and HOME!!!! So we will be home by the end of August. I can't get too excited because the time will go by slow then. But I want to pack the apartment and be ready TODAY! Of course it won't be today.
LOVE ALL OF YOU! and thanks for your prayers.
Shana
Tuesday, July 21, 2009
YW leaders luncheon
Today Valerie Wheatley and Cat Sparkman are coming to have lunch with Devree and I. I told Devree we have to look good today, which means wearing the hair. Devree has been oh so tired but this will perk her up.
We received 3 more pairs of socks yesterday. I realize that this is really not knee sock weather and there probably is not a selection in the stores. Thanks to all of you that found them on the internet and other places.
I keep trying to find out when Devree's next scheduled chemo time is and the doctors still have not put it on the schedule. I am such a planner and scheduler and being here has been so so hard. You don't know what you are doing from one day to the next or when they will schedule things for you, or how long appointments will last or when we get to go home! It is more than patience that I have to practice when you just have to hand the reins of your life over to someone else. We pray that the doctors and nurses will be inspired in how to help us. But most of the time I want to pray "Let us please go home soon!" I ache to be taking care of my family and being there for every little thing. Right now Dane is having a really hard time. He told Todd, "Dad you forgot 3 things. You forgot to bring Mom, Devree and the hospital with you." It will be interesting to live life without the security of the hospital. But I am ready to try. If you look at the St. Jude website, in the last 5 years they have increased the survival rate of medulloblastoma to 85%. That is a big jump from Dr. Gajaar's 65% rate that was earlier this year. So after doing a St. Jude study of the last 5 years of medullo patients, it is now 85%.
I haven't done quotes for awhile so here is my quote for today. From the Prophet Joseph Smith in Liberty Jail "Brethren, fear not, but be strong in the Lord and in the power of his might."
We received 3 more pairs of socks yesterday. I realize that this is really not knee sock weather and there probably is not a selection in the stores. Thanks to all of you that found them on the internet and other places.
I keep trying to find out when Devree's next scheduled chemo time is and the doctors still have not put it on the schedule. I am such a planner and scheduler and being here has been so so hard. You don't know what you are doing from one day to the next or when they will schedule things for you, or how long appointments will last or when we get to go home! It is more than patience that I have to practice when you just have to hand the reins of your life over to someone else. We pray that the doctors and nurses will be inspired in how to help us. But most of the time I want to pray "Let us please go home soon!" I ache to be taking care of my family and being there for every little thing. Right now Dane is having a really hard time. He told Todd, "Dad you forgot 3 things. You forgot to bring Mom, Devree and the hospital with you." It will be interesting to live life without the security of the hospital. But I am ready to try. If you look at the St. Jude website, in the last 5 years they have increased the survival rate of medulloblastoma to 85%. That is a big jump from Dr. Gajaar's 65% rate that was earlier this year. So after doing a St. Jude study of the last 5 years of medullo patients, it is now 85%.
I haven't done quotes for awhile so here is my quote for today. From the Prophet Joseph Smith in Liberty Jail "Brethren, fear not, but be strong in the Lord and in the power of his might."
Monday, July 20, 2009
Some very unique Socks
During the weekend we have received 5 pairs of socks. Each pair very individualistic and interesting. We are proud of your creativity. Devree says that for those of you that send extra stuff, she knows that trick. But if you are sending extra stuff to just be nice, she says "Thank you very much." I asked her to tell me which pair she liked the best so far, but she wouldn't say a peep. She is going to have a hard choice.
She is still struggling with nausea just about every morning and I just don't know how to make that better. She takes her ativan before she moves and can keep her pills down about an hour and then everything comes up. We still go to the medicine room everyday to get the IV 24 hour dose of the big drugs, but it doesn't help in the morning. Most of the weekend she has wanted to sleep. She felt so yucky yesterday that we didn't go to church. I miss church and next week we should be in having our last round of chemo. Devree is way too unstable to leave. I can't hardly go down to exercise because she falls too easily. I have to tell her to stay in bed and don't move till I get back. I miss church though.
We have been able to start on some of the books people gave Devree for her birthday. Koe I did finish "The Hourglass Door" by Lisa Magnum. I was getting pretty antsy for something to happen besides teenage girls steady boyfriends etc. but finally the author pulled through and I think the next book will be better. It is a good read if any of you would like to read it.
Crosby's, I totally enjoyed "Austenland" by Shannon Hale. That was so funny I didn't want it to end. Alas that was only a 1 day book for me. Are you reading Cindy, Chris and Tricia? READ that book. You will totally love it! I want to read Shannon Hale's other books now. Brother Crosby, I heard about your leg. I hope you are feeling better really soon.
Fauvell's Devree is reading "Yearbook" and she says, "Wow this is about Mormon kids." Devree has not been feeling her hottest so she hasn't read too much.
Cat I have started to read "The Crystal Cave" by Mary Stewart. One of the nurses said she loved it. I love to read about Medieval times so it is interesting. I will let you know how it goes.
We did go and see "UP" on Friday night. It was awesome and I can recommend it to everyone. We saw the non 3D version.
Have a great day everyone.
She is still struggling with nausea just about every morning and I just don't know how to make that better. She takes her ativan before she moves and can keep her pills down about an hour and then everything comes up. We still go to the medicine room everyday to get the IV 24 hour dose of the big drugs, but it doesn't help in the morning. Most of the weekend she has wanted to sleep. She felt so yucky yesterday that we didn't go to church. I miss church and next week we should be in having our last round of chemo. Devree is way too unstable to leave. I can't hardly go down to exercise because she falls too easily. I have to tell her to stay in bed and don't move till I get back. I miss church though.
We have been able to start on some of the books people gave Devree for her birthday. Koe I did finish "The Hourglass Door" by Lisa Magnum. I was getting pretty antsy for something to happen besides teenage girls steady boyfriends etc. but finally the author pulled through and I think the next book will be better. It is a good read if any of you would like to read it.
Crosby's, I totally enjoyed "Austenland" by Shannon Hale. That was so funny I didn't want it to end. Alas that was only a 1 day book for me. Are you reading Cindy, Chris and Tricia? READ that book. You will totally love it! I want to read Shannon Hale's other books now. Brother Crosby, I heard about your leg. I hope you are feeling better really soon.
Fauvell's Devree is reading "Yearbook" and she says, "Wow this is about Mormon kids." Devree has not been feeling her hottest so she hasn't read too much.
Cat I have started to read "The Crystal Cave" by Mary Stewart. One of the nurses said she loved it. I love to read about Medieval times so it is interesting. I will let you know how it goes.
We did go and see "UP" on Friday night. It was awesome and I can recommend it to everyone. We saw the non 3D version.
Have a great day everyone.
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