Rhen is a match for Chloe!
But... they were unable to collect enough cord blood when he was born so they cannot use it.
So I was excited for about 30 seconds, until i found out that it really doesn't matter right now since they can't use the cord blood anyway. Apparently the amount that can be harvested at birth can vary. Sometimes they can collect quite a bit, other times not. Might have to do with the doc's experience doing it, size of the placenta, cord or whatever. I don't have the answer and the Bone Marrow doc didn't either, he just said there is not enough for Chloe. So we're out of luck on that one. I guess it is reassuring to know that he could be a donor if she ever had to have another transplant, but lets all hope that never happens. I'm pretty sure we're good with just one time.
The cord blood donor they have located in the bank is better than most they have to work with in more ways than one, so that is a plus. Looks like we'll be in SLC every day next week for meetings about TBI (total body irradiation), bone marrow protocol, side effects, finances, home nursing, nutrition and so on throughout the BMT. It should be an exciting week.
In other good news, Stacie made it through 1 more year being married to me. 11 yrs [4017.664189 days] today. I ask her to think of it in years or at least months because 4017 days just seems like such a long time.
Also, Addie and her cousins Joni and Jamie spilled 10,000 beads on Josh and Stacy's floor - on purpose. Addie says it was Joni's idea - sounds like Elsie's to me. There really were 10,000 beads - at least so it says on the box. Kelly may be getting some payback for that Christmas gift in the future. Stacy will be cleaning those out of every nook and cranny for years.
Friday, December 28, 2007
Wednesday, December 26, 2007
Merry Christmas!
It's a releif to have Rhen here and the pregnancy over... but it's a little unnerving at the same time since it puts us that much closer to the BMT. We have events in our mind of what leads up to the transplant... like Christmas, Birth of baby, etc. We're running out of things that will happen first, so now the scary nervousness is setting in - well, more than it had before.
Saturday, December 22, 2007
Christmas Gift
Friday, December 21, 2007
chlo-pants the smarty pants
It was so good to have chloe come home with Jake! We had fun just haning out and being together. Jake said her mental evaluation was great! The Doctor said he usually has some recommendations for the kids but she didn't need any. One of the tests she was taking she reached where 15 year olds start and could keep going! What a smarty pants. He said she will have no problems developmentally. I am so thankful for that! I also am thankful to "some families in Providence" who unexpectedly gave us such a wonderful gift today! Tears filled my eyes at the generosity of who ever you are I hope you are blessed in return. Thank you, thank you!
Thursday, December 20, 2007
I 'll be home for christmas!
Chloe 's counts went from 200 yesterday to 1200!! A christmas miracle, as Addie would put it! They get to come home today! We are soooo very excited! She has a dental evaluation and some phyc (?) evaluation for like 3 hours to test her mental abilities before the BMT and they test it after to see if there were any affects from the transplant and radiation etc Then homeward bound! It has been such a hard month for us so we appreciate all who have prayed for our family! We are so thankful for family and friends that surround us so may you have a wonderful christmas! We will keep you posted when jake jr comes on saturday! It is a good day today!
Wednesday, December 19, 2007
we will take as little counts as we can!
Chloe's ANC's are up to 200!! We are excited they are on the rise and though they are still low at least they are registering! We are hoping that Friday she can come home if they continue to come up. Kins stayed with her last night and although she had to go to the bathroom alot from her Cdif they had fun together. It was soo good to see Jake all day today, I think he got even better looking and his muscles got bigger (if that is possible)! (-:
It was fun to spend the day with him even if we were tired and I am 8 1/2 months pregnant. Elsie kept calling him around the house making sure he was still there. And when he answered she would smile and say, "oh I thought you had gone back to the hospital." It was weird to have Jake home but not have chloe there too. We miss her so much!!
It was fun to spend the day with him even if we were tired and I am 8 1/2 months pregnant. Elsie kept calling him around the house making sure he was still there. And when he answered she would smile and say, "oh I thought you had gone back to the hospital." It was weird to have Jake home but not have chloe there too. We miss her so much!!
Tuesday, December 18, 2007
Perspective.
This place has a way of giving you some. I was just out in the hall and overheard another dad talking to a nurse. The dad is in a wheelchair (not sure the story there), they are here with their son (for cancer obviously ) and his wife just underwent some cancer surgery/treatment a few weeks ago.
Always have to be grateful for the shoes you're in. There are plenty that are more uncomfortable.
Always have to be grateful for the shoes you're in. There are plenty that are more uncomfortable.
Jake gets a break!
Tonight Jake will be able to come home to visit for a day. Kinsey was so nice to come and stay with chloe so that he can come and see us for a day! We can't wait to see him! The girls are excited to see him, and Addie gets to stay home from school. Thanks so much Kins! Chloe will have fun spending time with you!
From Jake: I should add here that lots of people have offered to come down and give me a break. I have said no because I'm a worry wart and I've wanted to be here - even though neither of us want to be here. I was finally persuaded I guess.
From Jake: I should add here that lots of people have offered to come down and give me a break. I have said no because I'm a worry wart and I've wanted to be here - even though neither of us want to be here. I was finally persuaded I guess.
Anytime
We're just waiting for some blood counts to come up. Anytime is good for us.
A couple of high school buddies dropped by for a visit today. Thanks Brett and Jerrin, it was good to see you guys and talk about the good 'ol days when we had no worries, but our parents did. We're all getting some grey hair, but I have them both beat.
No great news today. Chloe has Cdif again which we weren't too excited about. Good thing (i guess) is that it's caused by the antibiotics and not some kind of infection. So she started taking an antibiotic to fight the side effects of the antibiotics. She had a CTscan today to check our her insides to make sure there were no issues we need to be concerned about. The doc was worried there might be something happening in her bowels causing her the pain. Don't know the results on that scan yet though. She also had an EKG done this afternoon and will have an Echo and Hearing test tomorrow.
The tests are just to make sure everything is ok before the bone marrow transplant. She will have a dental eval on Friday, then back on the 28th (happy anniversary Stacie - 11 yrs of delight) for a spinal tap, bone marrow aspirate and placement of another line - either PICC(in her arm) or a third in her chest. She's not excited about that - at all.
Looks like the beginning of her rough ride will be on the 7th of Jan.
A couple of high school buddies dropped by for a visit today. Thanks Brett and Jerrin, it was good to see you guys and talk about the good 'ol days when we had no worries, but our parents did. We're all getting some grey hair, but I have them both beat.
No great news today. Chloe has Cdif again which we weren't too excited about. Good thing (i guess) is that it's caused by the antibiotics and not some kind of infection. So she started taking an antibiotic to fight the side effects of the antibiotics. She had a CTscan today to check our her insides to make sure there were no issues we need to be concerned about. The doc was worried there might be something happening in her bowels causing her the pain. Don't know the results on that scan yet though. She also had an EKG done this afternoon and will have an Echo and Hearing test tomorrow.
The tests are just to make sure everything is ok before the bone marrow transplant. She will have a dental eval on Friday, then back on the 28th (happy anniversary Stacie - 11 yrs of delight) for a spinal tap, bone marrow aspirate and placement of another line - either PICC(in her arm) or a third in her chest. She's not excited about that - at all.
Looks like the beginning of her rough ride will be on the 7th of Jan.
Dew Beverages Boost White Blood Cells?
Is it just a myth that a caffinated beverage like Mt. Dew or Coke would boost white blood cells?
I thought we might prove the myth wrong today, but I can't come to a conclusive answer for two reasons. One, Chloe wasn't really interested in the Mt. Dew and drank a minimal amount. Two, her white blood cells rose today to 0.2 from 0.1. Would her white blood cells have been greater had she drank the entire can? Or is it merely coincidence that her count came up. I'm leaning towards coincidence.
I might have to write into Myth Busters for the answer because I just don't have enough evidence to prove one way or the other.
I thought we might prove the myth wrong today, but I can't come to a conclusive answer for two reasons. One, Chloe wasn't really interested in the Mt. Dew and drank a minimal amount. Two, her white blood cells rose today to 0.2 from 0.1. Would her white blood cells have been greater had she drank the entire can? Or is it merely coincidence that her count came up. I'm leaning towards coincidence.
I might have to write into Myth Busters for the answer because I just don't have enough evidence to prove one way or the other.
Monday, December 17, 2007
baby update
I ended up not doing the amniotest. I finally was able to see the doctor instead of my midwife, whom I haven't been to happy with. He said he would rather not do the test and just start me on Saturday. So that is the plan. He said he wouldn't stop me, however if I were to go earlier, But we plan on baby on saturday. hoo-ray! Chloe counts are not rebounding very fast and we both are trying to get her to drink a mountain dew. One of the nurses there told us that dew boosts white blood cells. Jake has been trying to get her some but she takes after her mom and doesn't want to drink it. I told Jake to tell her that mom said it was ok just this once :-). I haven't heard yet if he got her to drink some. Sorry Jake, that you have had to stay there so long. I wish I could trade you off. We miss you and love you both here at the home front.
Sunday, December 16, 2007
Elsie, the care taker
I was pretty sick yesterday throwing up and such, all day Elsie would stroke my face and tell me I would be ok. Later that night she brought me, on a cutting board, broken up pieces of bread to my room and told me to eat them. She also ran and got me a glass of water. Such a sweetie. Today I feel alot better and was tired of not seeing Jake and Chloe so I decided to surprise them and just go down. I got the girls and myself ready and told them what my plan was and Addie said isn't that scary for the baby mom? I just broke down and said I missed them and it has been a long time and I want to see them, I sat down and Elsie came over to me and stoked my belly and said, "We have to wait for the doctor to take the baby at christmas. At christmas the doctor will take the baby and we can go see them." I looked into her big concerned eyes and backed down from my plan. What sweet girls we have! Tommorow I have the amniotest and it takes a day or so to get the results. Hopefully he is developed enough to come!!
Friday, December 14, 2007
The day after Thursday, and the day after that.
Friday we thought her ANC came up just a smidgen, but based off of todays numbers it had not. She also got a fever which means she has some kind of infection. They put her on some antibiotics to fight that while they run some blood cultures to verify where the infection is. It's a little scary getting an infection when her ANC [immune system] is so low. Hopefully the nupogen shots will do their job (which is to boost her ANC count) and she will fight off the infection.
She is in pretty good spirits but doesn't feel like doing much so we just hang out. Today she had visits from Grandma and Grandpa, Spence and Talya and Talya's family. And Spencers friend Nick (commonly refered to as Doug) and his wife Jill brought us some really good dinner. Chloe enjoyed the visits, although she didn't say much while they were here. She is probably a little tired of being with dad all the time, so visits now and then are nice - as long as no one comes sick.
Last night she was in a bit of pain and as usual the medicine makes her real chatty so we were up late talking about everything from Prophets and pioneers to who my favorite princess is. She asked me what the pioneers did if they got sick. I told her they tried to get help but they didn't have nice hospitals like we do; so some of them couldn't get the help they needed. She got real serious and said, "I don't want to die at this age Dad." I know she's thought about it, but that was the first time she has said it so bluntly. Broke my heart to hear it. I was all teared up immediately because I don't want her to either; then before i could compose myself to respond she says, "Who is your favorite in Snow White dad? The prince, Snow White or one of the Dwarfs?"
She is such a little trooper. Today she got some Colors of Courage beads. There is a bead for each shot, test, surgery, picc line, IV, round of chemo, hair loss, etc. that she has had since diagnosis so that she could make a necklace. She made 3 Necklaces.
She is in pretty good spirits but doesn't feel like doing much so we just hang out. Today she had visits from Grandma and Grandpa, Spence and Talya and Talya's family. And Spencers friend Nick (commonly refered to as Doug) and his wife Jill brought us some really good dinner. Chloe enjoyed the visits, although she didn't say much while they were here. She is probably a little tired of being with dad all the time, so visits now and then are nice - as long as no one comes sick.
Last night she was in a bit of pain and as usual the medicine makes her real chatty so we were up late talking about everything from Prophets and pioneers to who my favorite princess is. She asked me what the pioneers did if they got sick. I told her they tried to get help but they didn't have nice hospitals like we do; so some of them couldn't get the help they needed. She got real serious and said, "I don't want to die at this age Dad." I know she's thought about it, but that was the first time she has said it so bluntly. Broke my heart to hear it. I was all teared up immediately because I don't want her to either; then before i could compose myself to respond she says, "Who is your favorite in Snow White dad? The prince, Snow White or one of the Dwarfs?"
She is such a little trooper. Today she got some Colors of Courage beads. There is a bead for each shot, test, surgery, picc line, IV, round of chemo, hair loss, etc. that she has had since diagnosis so that she could make a necklace. She made 3 Necklaces.
Thursday, December 13, 2007
The Day Before Friday
Nothing really exciting happed today. Chloe didn't feel great most of the day so we didn't do much. Her nupogen shots are getting really old. She hates getting them and its getting tiresome trying to talk her into cooperating. At first she was reluctant but I could tell her she needs them to get her counts back up. After some persuasion she would do it. Now, after a week of getting them and her ANC is still zero, she doesn't beleive me when I tell her the shots will help get her counts up. I hope she starts to rebound soon because I'm running out of persuasion tactics.
I called home to talk to Addie tonight and I can't beleive how fast she is growing up. She'll be wanting to date before you know it. Looks like I'd better get a shotgun to mount over the fireplace and photochop some Vietnam combat photos with my face in them to hang in the entry way - you know, for intimidation when boys come over. She misses the silly notes I leave for her on her whiteboard in her room at night, and I miss leaving them.
So it sounds like Spence put Elsie to work at the office. I think there are rules about kids that young working, but they seem to get away with it in other countries so why not here? I'm going to sign her up for some classes and hire her on full time next year as our systems engineer. She accomplished more than needed quickly and was able to just kick back and supervise the rest of the day. I don't think I've ever put my feet up on my desk, but there is a good chance I've thrown back a Dew in that chair. Least she could have done was emptied my garbage for me, and it looks like there is a box on my desk that needs to be shipped out to someone, and the warehouse needs cleaning, sample boards hung... I'll have to send out a memo. I hope that she isn't really drinking that, or Spence will hear about it from Stacie later. Gosh she is a cutie.
Stacie is still anxioulsy waiting to go into labor. Poor girl. I'm pretty sure she is tired of me telling her that she can do it and that if the baby is ready he will come early. I know this because she told me she is sick and tired of hearing that.
Don't worry Stacie, I know you are miserable but if the baby is ready he will come early.
I called home to talk to Addie tonight and I can't beleive how fast she is growing up. She'll be wanting to date before you know it. Looks like I'd better get a shotgun to mount over the fireplace and photochop some Vietnam combat photos with my face in them to hang in the entry way - you know, for intimidation when boys come over. She misses the silly notes I leave for her on her whiteboard in her room at night, and I miss leaving them.
So it sounds like Spence put Elsie to work at the office. I think there are rules about kids that young working, but they seem to get away with it in other countries so why not here? I'm going to sign her up for some classes and hire her on full time next year as our systems engineer. She accomplished more than needed quickly and was able to just kick back and supervise the rest of the day. I don't think I've ever put my feet up on my desk, but there is a good chance I've thrown back a Dew in that chair. Least she could have done was emptied my garbage for me, and it looks like there is a box on my desk that needs to be shipped out to someone, and the warehouse needs cleaning, sample boards hung... I'll have to send out a memo. I hope that she isn't really drinking that, or Spence will hear about it from Stacie later. Gosh she is a cutie.Stacie is still anxioulsy waiting to go into labor. Poor girl. I'm pretty sure she is tired of me telling her that she can do it and that if the baby is ready he will come early. I know this because she told me she is sick and tired of hearing that.
Don't worry Stacie, I know you are miserable but if the baby is ready he will come early.
Wednesday, December 12, 2007
Another Day
counts are still not registering and we are closer to needing a blood transfusion and possibly plateletts. She has very little energy so she has just kinda been hanging out. She was glad to have a visit from Mal and Eliza today. Eliza is a cute little girl and looks just like her daddy - well except for the earrings. Eliza, not Zach.
When the Jazz dancers stopped by the other day Chloe made a comment that she'd like to be a cheerleader. Our nurse heard her and knew that there was another patient on the floor who had been a cheerleader at Weber High (she is now 19). So the Nurse asked her [Natalie] if she would like to visit Chloe and tell her about being a Cheerleader. Chloe denies ever saying that because she wants to be a nurse now. Nonetheless, we really enjoyed visiting with Natalie.
It's always been a little frustrating to Stacie and I because we want to help Chloe feel better but she is so little that she doesn't know how to describe the pain she is in. So, I asked Natalie what chemos she had taken and how they made her feel. She had taken several of the same that Chloe had so she was experiencing a lot of the same side effects like mouth sores and other sores throughout her body. She told us how miserable the open sores were, especially when they were down in the bum area. She described them as an intense burning that just won't go away no matter what position you are in.
She also said that when your counts are really low everything hurts. She has a hard time walking and just moving around or being touched is painful. Which explains a lot about how chloe acts when her counts are super low.
I was glad for the visit because i understand what Chloe is going through better. But having someone who is experiencing it first hand explain how it really feels just makes me more sad for Chloe. I mean i always felt really bad for her, but now I know even more how miserable she is. And I feel so bad for Natalie who just graduated and probably had all kinds of plans, then suddenly she is fighting for her life. Girls that are 19yrs old or 6 yrs old shouldn't have to deal with this - no one should.
Coincidentally, Mal knew Natalie's family somehow. Chloe had fun trying to feed Eliza and watching her cry when I was holding her and she realized that I sound like her dad, but i'm not. I must not smell as sweet, like pumkin bread or honey whole wheat. That's one of the reasons I've always liked Zach, 'cause he smells so sweet. Mom and Dad really should have named him Frankensence.
When the Jazz dancers stopped by the other day Chloe made a comment that she'd like to be a cheerleader. Our nurse heard her and knew that there was another patient on the floor who had been a cheerleader at Weber High (she is now 19). So the Nurse asked her [Natalie] if she would like to visit Chloe and tell her about being a Cheerleader. Chloe denies ever saying that because she wants to be a nurse now. Nonetheless, we really enjoyed visiting with Natalie.
It's always been a little frustrating to Stacie and I because we want to help Chloe feel better but she is so little that she doesn't know how to describe the pain she is in. So, I asked Natalie what chemos she had taken and how they made her feel. She had taken several of the same that Chloe had so she was experiencing a lot of the same side effects like mouth sores and other sores throughout her body. She told us how miserable the open sores were, especially when they were down in the bum area. She described them as an intense burning that just won't go away no matter what position you are in.
She also said that when your counts are really low everything hurts. She has a hard time walking and just moving around or being touched is painful. Which explains a lot about how chloe acts when her counts are super low.
I was glad for the visit because i understand what Chloe is going through better. But having someone who is experiencing it first hand explain how it really feels just makes me more sad for Chloe. I mean i always felt really bad for her, but now I know even more how miserable she is. And I feel so bad for Natalie who just graduated and probably had all kinds of plans, then suddenly she is fighting for her life. Girls that are 19yrs old or 6 yrs old shouldn't have to deal with this - no one should.
Coincidentally, Mal knew Natalie's family somehow. Chloe had fun trying to feed Eliza and watching her cry when I was holding her and she realized that I sound like her dad, but i'm not. I must not smell as sweet, like pumkin bread or honey whole wheat. That's one of the reasons I've always liked Zach, 'cause he smells so sweet. Mom and Dad really should have named him Frankensence.
Tuesday, December 11, 2007
yep, Stacie is right. Chloe's counts are even lower. She didn't feel so hot today so we just kinda lounged around, watched movies, played games and read some books. She perked up when Kinsey stopped by tonight and was really sad to see her leave. I think maybe she is just tired of me :-). She was also excited about the books grandma and grandpa sent down - thanks mom and dad. We have a stack about 18" high of books she has read or is reading. She has been playing a spelling game over and over for the last few days and got Kinsey hooked on it too. Hopefully her immune system will rebound soon.
No baby yet, darn it
I heard from Jake today that even chloe's white counts are barely in existance. I was bummed out to hear of that, it might mean a longer time to recover. No fevers though which means no infections anywhere, which is good. We miss them here at home soooo very much! It isn't the holidays without them here. No baby yet, darn it. I keep getting signs but then things stop. Very frustrating! We were watching a football game the other night with Spence and Tal and Elsie said that if her dad were playing they would win. So I know she misses him, but little does she know her dad could care less about the game. Addie always asks when chloe is coming home. Hopefully before christmas. I didn't think I would spend the holidays like this, but it is good she is getting what she needs at the hospital. Maybe a baby tonight? (probably not)
Monday, December 10, 2007
sweet girl.
Chloe was in little pain tonight so she got a dose of oxycodone which made her real chatty. She finally settled down to sleep just a minute ago and I was hugging her and saying goodnight. I told her I was sorry that she had to be sick, and I wished she wasn't because it's not fair. She said, "It's ok dad, lots of kids are sick. I'm not the only one."
Boozer and Okur
Today wasn't really any better than yesterday as far as Chloe's health goes. Actually worse since her ANC is 0. Sounds like we'll be here for a while. At least that's what Dr. Barnette tells me this morning. We were having a good chat about the bone marrow protocol and whatnot until we were interrupted by a visit from Carlos Boozer and Mehmet Okur. Welcomed interruption though as it quickly changed the discussion from heavy to light. Not that basketball isn't a serious sport. Mehmet and Carlos play basketball for some NBA team - I think it is called the Utah Jazz. Ha ha, just kidding. No seriously, if Spence hadn't come to live with us at the first of the year there is a good chance i wouldn't know which team they played for if you just told me their names. Sorry, i just don't follow sports very well.
I have to say though, i've watched them play a few times with Spence and they are a delight. Both were very nice guys, and fairly tall. They were laughing at how cute Chloe was looking up at them through the window on her door (she couldn't leave her room today because her counts are so low). There were also some jazz Dancers, they would probably feel bad if I left them out. I think their names were Jocelyn and Bridget. So i hope there isn't a problem with me posting their picture here. I had to sign a waiver to allow them to use the pictures they took of us... but I think that is because they wanted to include Chloe's name and diagnosis. I guess i'll know if I get sued. Carlos and Mehmet and the dancers signed Chloe's ball which we now throw back and forth in the room when we get bored. It's bouncy.
After the Jazz stopped by a volunteer came by with a Dalmation Fire dog. I was really surprised they let a dog on the floor, but we just had chloe wash up real well immediately after he left. The Jazz guys were not expected and kinda stole the thunder from the dog for most kids. Chloe thought it was cool to see a dalmation though. He was a nice dog, but no Stacie, I'm not persuaded to get a pooch.
Sunday, December 9, 2007
Lazy Sunday
Nothing much happening today. Chloe's ANC is back down to 300. She hasn't been feeling as well today and I'm having a hard time getting her to eat or drink much. We had a nice game of Apples to Apples and Sorry with the nurse and she beat Chloe and me both times. Hopefully tomorrow she'll feel a little better.
Saturday, December 8, 2007
Saturday is a Special Day.
nothing really exciting happened today. Chloe was feeling well, but a little tired because of all the fun she had with Kinsey yesterday. Her ANC is back up again, but after talking to the Doc it is next week they are concerned about. The counts usually drop off around the 10th day after chemo. So i guess we'll wait and see how it goes. But i think it is a good sign that they went from 300 yesterday to 1500 today. Hopefully she will recover from the second round of chemo as quickly.
Chloe was excited to see 6-8" of snow outside the window this morning, but sad at the same time because she wants to go skiing but can't. She looks forward to teaching her little brother how one day when she is all better.
Have a good Sabbath everyone.
Chloe was excited to see 6-8" of snow outside the window this morning, but sad at the same time because she wants to go skiing but can't. She looks forward to teaching her little brother how one day when she is all better.
Have a good Sabbath everyone.
Friday, December 7, 2007
me and kinsey had a girls day today. we read books lots and lots of books. And we watched movies and playd apples to apples and painted again. I had a slushy a purple one. I had macaroni for dinnr and painted an elf building a toy and a holly jolly wreath and mistletoe. and kinsey painted a Christmas tree. my nurse is Brittne and my tech is angie. I got my nupogen shot and my Bandege changed too. and brittne told us that a nurse asked brittne to change my picc line cause she whanted to watch a little longer before she Changed other bandeges. It was funny. We watched high school musical and mickey mouse's Christmes. I got my platelets so I got hooked up to my pole. every time I spell two words I have to take a drink because I am not drinking enough. we read the magic school bus. merry Christmes, from chloe
Snow Day.
This morning it was snowing so Chloe and I decided to bust out of this joint and carve some turns while the white stuff was light and fluffy. Chloe bridged an epic gap with a huge dinner roll and carved some intense lines down steep, rocky shutes up at Snowbird. While skiing the back country we had a lot of time to contemplate our purpose in life and our relationship with mother earth, and one another. It was a great day that we will remember for the rest of our lives. We made it back just in time for her Nupogen shots and platelets transfusion.Chloe's ANC dropped to 300 today and she started having nupogen shots to try and help her system bounce back. Hopefully they won't go too much lower tonight. Tonight she has been complaining of pain in her bum. She complained of this same pain for a couple of days back when she had all kinds of infections. Hopefully it is unrelated.
Kinsey came today and spent most of the day with Chloe so i could get out for some fresh air for a bit. I went to run a couple of errands and got lost - well, i knew where i was i just couldn't find the right exit. I realized once again why I like living where we do - some days I complain about how busy Logan's main street is thinking I'd prefer a smaller town. Here it seems like every street is busy. Anyway, Chloe was really looking forward to having Kinsey come and doesn't want her to leave tonight. She and Kins are buddies. They had a lot of fun doing girl stuff together.
Have a good weekend everyone. Chloe and I are going to live it up while we're out of town.
Thursday, December 6, 2007
From Chlo-Pie
Up and Back Down
We got Chloe's blood counts last night and her anc was 1300 which is fairly decent. I was glad they were that high because the chemo that she just got will knock them right back down. Her ANC today is 900. I spoke to her doctor and he said to keep my fingers crossed because he expects her to bottom out real soon and we really don't want her to get an infection or fevers. I really hope she doesn't catch anything. The staph infection, C-dif, crypto and infections she had in her intestines were miserable for her and caused other problems too. We'll just pray she doesn't get a fever and rebounds quickly.
On the bright side, Chloe was feeling great today and has not been in her bed much at all. We did a lot of coloring, painting, puzzles, games, reading of books and just messing around. It's frustrating being here when she is feeling well, but with her ANC declining fast it's best that we stay until she recovers.
I ate an atomic fireball today. It was stinkin' hot, hence the name i guess.
On the bright side, Chloe was feeling great today and has not been in her bed much at all. We did a lot of coloring, painting, puzzles, games, reading of books and just messing around. It's frustrating being here when she is feeling well, but with her ANC declining fast it's best that we stay until she recovers.
I ate an atomic fireball today. It was stinkin' hot, hence the name i guess.
Wednesday, December 5, 2007
New Blog Stuff
Stacie has been after me for a while to make our blog a little more festive because she has been a little short on time. We weren't able to get a family picture or anything to send out. So, I busted out the Santa suit and killed to birds with one stone here. I'm standing over there by myself because my gut is in the way and the girls kept bouncing off of it. A picture won't come to you in the mail, but you can see it here as many times a day as you would like. Seriously though... take some time to be with your families cause looking at us for that long can be a little weird.
Today was just ok. Chloe woke up feeling pretty lousy and nausiated. The chemo was a little rough on her and she had to vomit a few times this morning and hasn't felt like eating anything. She's finally sitting up now (it's about 4) but is not real excited about much.
Despite that, Chloe has been pretty popular today. She has had visits from her nurse every hour or more of course, the Tech nurse, her oncology doc, bone marrow doc, nurse practitioner, child life specialist, sharps container specialist, volunteer, house keeping, hospital equipment inventory specialist, different tech nurse, volunteer, volunteer, volunteer again, yet another tech nurse, and volunteer again. And then a different volunteer. I was thinking maybe a door stop on the door to keep it open would have been nice; but i have no idea where to get a door stop. She usually doesn't have that many visits in one day unless she's having complications so it was a little odd. But, the volunteers came bearing gifts donated by someone so that was really nice. Chloe now has a bunch of pencils, a slinky, and some other little Christmas coloring books and such.
The bone marrow Doctor brought by some information about what lies ahead. He gave me a packet that listed the different drugs and their side effects which include everything that i listed yesterday with the addition of the possibility of seizures, kidney failure, liver failure, scarring of the lungs, stunted growth, learning disabilities, anemia, death, bleeding in the bladder, pains in the hands and feet, infertility, shortness of breath, shaking of the hands and so on. Of course those are just possible side effects that they have to tell us about and we hope Chloe has none of them. Although herbal enthusiasts would tell us we have other options, i think most people would chose the protocol that has the best proven cure rate - which is where we are. It's just real depressing to know what could happen. I really don't know how the Doctors and Nurses down here can do it everyday- but i'm glad they do.
Chloe got a chemo shot this afternoon which I think it is her last chemo until the week before her transplant. Last night I told her stories about Nephi and others that knew they had to do something even though they might have been scared; so they were brave and did it because they knew it was the only right choice. She loves to hear stories. Today as she got her chemo shot i reminded her of how tough Nephi was and she calmed down and did a lot better with it. She is a tough little girl.
Thats about it from down here - well, that and i have a knuckle that is kind of dry and could use some lotion.
Today was just ok. Chloe woke up feeling pretty lousy and nausiated. The chemo was a little rough on her and she had to vomit a few times this morning and hasn't felt like eating anything. She's finally sitting up now (it's about 4) but is not real excited about much.
Despite that, Chloe has been pretty popular today. She has had visits from her nurse every hour or more of course, the Tech nurse, her oncology doc, bone marrow doc, nurse practitioner, child life specialist, sharps container specialist, volunteer, house keeping, hospital equipment inventory specialist, different tech nurse, volunteer, volunteer, volunteer again, yet another tech nurse, and volunteer again. And then a different volunteer. I was thinking maybe a door stop on the door to keep it open would have been nice; but i have no idea where to get a door stop. She usually doesn't have that many visits in one day unless she's having complications so it was a little odd. But, the volunteers came bearing gifts donated by someone so that was really nice. Chloe now has a bunch of pencils, a slinky, and some other little Christmas coloring books and such.
The bone marrow Doctor brought by some information about what lies ahead. He gave me a packet that listed the different drugs and their side effects which include everything that i listed yesterday with the addition of the possibility of seizures, kidney failure, liver failure, scarring of the lungs, stunted growth, learning disabilities, anemia, death, bleeding in the bladder, pains in the hands and feet, infertility, shortness of breath, shaking of the hands and so on. Of course those are just possible side effects that they have to tell us about and we hope Chloe has none of them. Although herbal enthusiasts would tell us we have other options, i think most people would chose the protocol that has the best proven cure rate - which is where we are. It's just real depressing to know what could happen. I really don't know how the Doctors and Nurses down here can do it everyday- but i'm glad they do.
Chloe got a chemo shot this afternoon which I think it is her last chemo until the week before her transplant. Last night I told her stories about Nephi and others that knew they had to do something even though they might have been scared; so they were brave and did it because they knew it was the only right choice. She loves to hear stories. Today as she got her chemo shot i reminded her of how tough Nephi was and she calmed down and did a lot better with it. She is a tough little girl.
Thats about it from down here - well, that and i have a knuckle that is kind of dry and could use some lotion.
Tuesday, December 4, 2007
Tuesdays are for turkeys.
So like Stacie mentioned, our visit that we thought was just a couple of days of chemo might end up being a couple of weeks or more. I was surprised, but i'm glad they are taking precautions and watching her close to make sure the staph infection doesn't come back. It's the best thing to do and maybe we'll get lucky and she'll rebound quickly.
Chloe has been doing well today. She felt pretty junky this morning, but after some meds and a good nap she felt better. She is just finishing her third 3 hr dose of Chemo called Ara-C and has one more at about 6 in the morning. Side effects of this one are nausia, diarehha, mouth sores, eye irritation, hair loss, abnormal liver function, loss of appetite, flu like symtoms and low blood counts for 1-3 weeks after treatment. We're shooting for one week, but it might be 3. She hasn't had too many side effects so far except some nausia and loss of appetite. Tomorrow she will also get a dose of another chemo (PEG) that has similar side effects. She usually handles it pretty well, she just hates getting the shot. She'll have to get used to them i guess. Sounds like she'll be having Neupogen shots every day until her blood counts rebound.
Ironically, while Chlo was home we all played a game called Apples to Apples where you are given a subject and then you choose from your cards that you think best matches that subject. The subject was "Horrible" and Chloe happened to have a card that said "getting shots" on it. We chose hers as the best match - she knows better than most of us.
The nurse told us today she drives a cruiser. Chloe thought that was pretty cool. I don't get why people like landcruisers, but whatever.
At about 3:27 Chloe water colored a house and then drew overtop to add all the detail. She worked on it for a couple of hours and everyone was impressed with her mad drawing skills. She says it's just like our house, except she forgot the doorbell. She also added a rose bush and a small plum tree, with hiking trails to the hill behind. It was glorious. All our girls are getting really good at drawing, we always have crayons on the table at our house because the girls love to color together. If they aren't doing that, Chloe's teaching them how to be nurses.
Spence and Tal (my bro and his lady) are coming to live at our house until we get home just in case Stacie goes into labor. Thanks Spence and Tal. We have tons of neighbors offering to help and we really appreciate that too, we might have to call on you. Really, we're doing Spence and Tal a favor 'cause they'll be having kids before Spence knows it. Being around Elsie and Addie will help them get ready. Actually, being with Stacie feeling so uncomfortable might convince Tal to hold off for a while. Probably not.
Addie is doing very well in school and loving it. She just told me tonight about a test she has tomorrow on the weather. She said Logan had mostly Cirrus clouds lately which indicate a possible storm and they were followed by Cumulus clouds. She really likes school, and has had fun preparing book reports with her freinds. She is also a huge help around the house which is very nice these days. Chloe got some fingernail polish and lipstick today. I asked her if she wanted to put on the lipstick, but she wanted to wait until she could do it with Addie. She is lucky to have such a good big sister to play with and look up to.
Elsie is the cutest little stinker. The last couple of weeks she has grown up all of the sudden. She started being more reverent at church which is nice - watch, Sunday she'll be out of control now that i said that. The poor girl has been a little sick over the weekend, but is feeling better now. You can tell when she is sick because she asks to go to bed and has the same amount of energy as a normal kid. She is always leaning in to listen to Stacie's tummy and talk her her little bro. She can't wait to see the baby and is already playing with (and breaking) his stuff. She'll teach him all about eating sugar out of the pantry bucket, sneaking candy, drawing on walls, how to jump the highest off the furniture etc.
I ate a burger with Telly who was down in SLC today. I only planned on a couple of days here so he brought me some clothes and whatnot. Thanks Telly. He probably didn't realize he was carrying my underwear. We didn't share a burger, maybe i should have specified that. The burgers were fairly decent, but not life changing like you might expect from the hospital cafeteria.
I've tried to make this post as long as possible. I'm sure there are plenty of other things i could write to make it longer; like the weather conditions, how many Trix balls Chloe at for breakfast, or phone calls I made. I'm a little tired though so I think I'll end it here. Maybe tomorrow I'll outdo this post with an excessivly long one. Just for fun.
Chloe has been doing well today. She felt pretty junky this morning, but after some meds and a good nap she felt better. She is just finishing her third 3 hr dose of Chemo called Ara-C and has one more at about 6 in the morning. Side effects of this one are nausia, diarehha, mouth sores, eye irritation, hair loss, abnormal liver function, loss of appetite, flu like symtoms and low blood counts for 1-3 weeks after treatment. We're shooting for one week, but it might be 3. She hasn't had too many side effects so far except some nausia and loss of appetite. Tomorrow she will also get a dose of another chemo (PEG) that has similar side effects. She usually handles it pretty well, she just hates getting the shot. She'll have to get used to them i guess. Sounds like she'll be having Neupogen shots every day until her blood counts rebound.
Ironically, while Chlo was home we all played a game called Apples to Apples where you are given a subject and then you choose from your cards that you think best matches that subject. The subject was "Horrible" and Chloe happened to have a card that said "getting shots" on it. We chose hers as the best match - she knows better than most of us.
The nurse told us today she drives a cruiser. Chloe thought that was pretty cool. I don't get why people like landcruisers, but whatever.
At about 3:27 Chloe water colored a house and then drew overtop to add all the detail. She worked on it for a couple of hours and everyone was impressed with her mad drawing skills. She says it's just like our house, except she forgot the doorbell. She also added a rose bush and a small plum tree, with hiking trails to the hill behind. It was glorious. All our girls are getting really good at drawing, we always have crayons on the table at our house because the girls love to color together. If they aren't doing that, Chloe's teaching them how to be nurses.
Spence and Tal (my bro and his lady) are coming to live at our house until we get home just in case Stacie goes into labor. Thanks Spence and Tal. We have tons of neighbors offering to help and we really appreciate that too, we might have to call on you. Really, we're doing Spence and Tal a favor 'cause they'll be having kids before Spence knows it. Being around Elsie and Addie will help them get ready. Actually, being with Stacie feeling so uncomfortable might convince Tal to hold off for a while. Probably not.
Addie is doing very well in school and loving it. She just told me tonight about a test she has tomorrow on the weather. She said Logan had mostly Cirrus clouds lately which indicate a possible storm and they were followed by Cumulus clouds. She really likes school, and has had fun preparing book reports with her freinds. She is also a huge help around the house which is very nice these days. Chloe got some fingernail polish and lipstick today. I asked her if she wanted to put on the lipstick, but she wanted to wait until she could do it with Addie. She is lucky to have such a good big sister to play with and look up to.
Elsie is the cutest little stinker. The last couple of weeks she has grown up all of the sudden. She started being more reverent at church which is nice - watch, Sunday she'll be out of control now that i said that. The poor girl has been a little sick over the weekend, but is feeling better now. You can tell when she is sick because she asks to go to bed and has the same amount of energy as a normal kid. She is always leaning in to listen to Stacie's tummy and talk her her little bro. She can't wait to see the baby and is already playing with (and breaking) his stuff. She'll teach him all about eating sugar out of the pantry bucket, sneaking candy, drawing on walls, how to jump the highest off the furniture etc.
I ate a burger with Telly who was down in SLC today. I only planned on a couple of days here so he brought me some clothes and whatnot. Thanks Telly. He probably didn't realize he was carrying my underwear. We didn't share a burger, maybe i should have specified that. The burgers were fairly decent, but not life changing like you might expect from the hospital cafeteria.
I've tried to make this post as long as possible. I'm sure there are plenty of other things i could write to make it longer; like the weather conditions, how many Trix balls Chloe at for breakfast, or phone calls I made. I'm a little tired though so I think I'll end it here. Maybe tomorrow I'll outdo this post with an excessivly long one. Just for fun.
3 day treatment? more like 3 week
Jake talked to the docotor yesterday and he said this round is going to knock her counts to rock bottom and since she had a staph infection they want to keep her 2 to 3 weeks until her counts recover. Just as a precaution. That was news to us. So I have Telli Longhurst bringing him more clothes cause he only brought 2 pair and I can't relieve him because of my big belly. He said her tummy was hurting alot after the first round yesterday, so I don't know how it will go. As for the baby if it comes I will have to call Jake and he will get someone to sit with Chloe and he will drive down as fast as he can, maybe I can have my brother in law give him a police escort so he can get here faster.(haha, no really that would be nice) Anyway that is the latest. I shouldn't say anymore cause I took this new hard and don't want to sound pesimestic!
Monday, December 3, 2007
Back again, Back Again, Jiggity Jog
We're back for another couple of days of chemo. Chloe is feeling pretty well today and just excited to be here - well, that might be a stretch. She just ordered a steak for lunch, which is odd because she hasn't eaten beef for a few years now. During her first round meat tasted metallic, so she hasn't wanted any. We'll see if she likes her lunch today. Stacie is home just wishing she was in labor so the baby would be here. She's a little tired of being pregnant.
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