home again home again jigity jig

It is good to have both Jake and Chloe home!! Although the med's make her stomach hurt chloe is in good spirits. She is not eating much and her magnesium level is low but other than that she is doing fine. Jake and her came home on a four wheeling trail and she had fun seeing the mountains. We had fun being together as a family, but she will go back on monday for another round. But that will be the last one in december, until her BMT. I have a doctor apt tommorow so we will see what they say, most likely nothing exciting. I am going to try to get chloe to eat something so wish me luck.

Tuesday

nothing real exciting happening today ( i guess thats all relative) Chloe and I came down early Monday morning and started her chemo treatments. She is on 3 hour doses every 12 hrs for a total of 4 doses. Hopefully we'll be coming home Wends or Thurs. Side effects of this one are temorary eye irritation [looks like pink eye] and the usual side effects of nausia, some stomach pain, possible organ damage, etc. She has been on a few fluids to help flush her out and she has actually felt pretty good other than some stomach pain. They have been giving her eye drops every couple of hours to prevent the eye side effect. Right now she is taking a needed nap that she argued with me about - so i left the room for a few minutes and turned the lights off and when i came back she was sleeping. Dads are sneaky.


I just spoke with the bone marrow people to make sure everything was falling into place like it should. They have 3 marrow donors and 2 cord blood donors lined up. They are all good matches and very similar. They have extensive typing done on 1 of the marrow donors and are waiting for the typing on the other 2. Once they receive that, the doctor will determine whether they use a cord blood donor or marrow donor.


Stacie and I have filled out a bunch of paperwork and whatnot for a place called Viacord which will store our baby's cord blood for us. Once Jake jr. is born, the doc will collect the cord blood with that kit and send it off for testing. If it is a good match for Chloe, they will use that instead of the other possible matches from the database. Hopefully everything will go ok with the birth since Stacie has been a bit more stressed this time than her previous pregnancies. Not sure why.



Yesterday a volunteer dropped by and gave Chloe a book about a superhero that fights cancer written by a little boy [treated here]with the help of his mom. With the book she got a cape to wear so that she could be a cancer fighting superhero too. She thought that was pretty cool, and it coincidentally matched her T shirt. So here she is with her super hero cape. I've always thought that capes should not be worn unless they match your shirt. Thats just me though.

Thanksgiving

Chloe's immune system was pretty low this week so although she was feeling fine, we had to stay home for Thanksgiving instead of spending it with family. As much as we love our fam, it's just not worth the risk that Chloe might catch something. Stacie made a great dinner, and pies. We have lots of left overs which is fine with me. All the girls dressed up in their fancy dresses so we could have a princess style feast and they reminded me of how a prince should eat and speak. I'm a lousy prince. We realized at the end of the day that it just wasn't a normal Thanksgiving since we didn't have a football game on the TV all day. Though it sounds like everyone up at my parents got to see plenty since Grandpa and Andy are big fans - which is great.

Each year my family has a tradition of getting Christmas trees on Thanksgiving weekend up in WY. We were not going to go this year since Chloe hasn't been able to do much, but we decided that just a few of us would. Stacie is not feeling up to traveling and really shouldn't being as pregnant as she is, so Addie, Elsie and I ran up for the day and found a tree. Usually there is quite a bit of snow up there and it's almost always storming. This year just a skiff, which made hiking around the mountain easier than it is through a couple of feet of snow. Addie and Elsie had a lot of fun playing with their cousins who they have been wanting to see for a long time.

Stacie and Chloe had fun together at home making a gingerbread house, watching princess movies, and decorating the house with a bunch of holiday decor. Chloe has been waiting for us to get home so she can decorate the tree and drink some eggnog. She loves to decorate and draw, just like her mom. I hope you all had a great Thanksgiving. We all have a lot to be thankful for not just this time of year, but always.

nothing in particular

We had an uneventful weekend which is so nice. We just hung out at home and chloe felt good, except for her mouth and bum sores (due to chemo) but we can handle that. They hurt but its nothing that a little codine won't cure. I went to the doc on friday and she said the earliest they could start me was at 351/2 weeks. That would be Dec 1! Well that is right in the middle of her chemo treatments and nup. shots so I think I will wait a little longer. The week of the 20th sometime. So I won't go past then. I assured her that this was my descision and that I wouldn't sue them if anything went wrong. I think they were leary of doing it early because of that and they would feel bad if anything did go wrong. But I feel pretty comfortable 2 weeks early. So that is the plan. Thanks soooo much for all the gifts at my shower. They are great and I apprectiate a night filled with good food, good company, and of course gifts for my baby!

Movie night

Spencer and Tal came over last night and watch the movie Ratatouille, although the movie was a yawner, the girls had fun wrestling afterward and having stuff animal pillow fights (along with spence tal and dad) We discovered spencer could be beat pretty easily at leg wrestling (even with his amazing calves haha) Tal is a wwf womens champ, elsie is the bucking jake bronco champ and addie is the most kartwheels in one hour queen. Even chloe was up to throwing an animal or too. We all had fun and laughed hard I thought I might go into labor! It was fun to see chloe in good spirits. Good times.

Biology

The room we stayed in at the hospital this time was really close to the landing pad for the Life Flight helicopter. Throughout the day we saw the helicopter come and go several times just 100ft. from our window. Chloe thought it was pretty neat to see that and she hopes that we get that room next time. Thinking about the kids that might be coming on the helicopter, she asked me why some people get cancer and others don't. Thats kind of a tough thing to explain to a little girl. Especially when she's your six year old who has cancer with eyes looking up at you like these. Every once in a while she gets real sad and asks me hard questions that you wouldn't expect a girl her age to think about.

Science has never been my subject, so I'm glad I have been able to retain some information from discussions with doctors and nurses. I did my best and explained it really simple for her. She had lots of questions about why it's in her blood, where the bad cells go, and how many times someone can get cancer. She was confused why her aunt Kinsey didn't have to have treatments after her cyst was removed (they thought it might be cancerous, but it wasn't), and what Marcus (a boy in our ward) had to do for his brain tumor. She didn't understand why the doctors could go in and remove some cancer, but they couldn't remove hers. So we had a talk about where her cancer is and how the treatment she gets and the bone marrow transplant is kind of like removing the bad blood cells. Tough subject for a six year old. But like most kids, she suddenly changes the subject with a random question "What do you think the Hogwarts school in Harry Potter looks like?"

They surprised us and let us come home last night sooner than we planned. After her big bag of Methotrexate on Monday, they had to keep flushing her system as Stacie mentioned. They thought it would take until the end of the week to get the level of chemo in her blood low enough to send her home, but it came down sooner than they thought. She was really glad to be home and play with her sisters. Addie and Elsie came down the other night to visit her in the hospital, but it's a lot more fun to play at home.

Our good neighbors threw a baby shower for Stacie last night since we'll be having our first boy. You all are too generous! I know Stacie will be sending cards and such, but thanks a lot to you all from me.

I drank a V8 yesterday. It tasted like vegetables.

fluids, fluids and more fluids

Chloe asked yesterday why do I have to have so much fluid? while going to the bathroom the umpteenth time. It is ironic that they give her the chemo while giving fluid so that it goes out as fast as it goes in. I guess with high dosages the effects can damage things if left in to long. I was told to watch her hands and feet to check for burning redness. So far though she seems to be handling this med better than last. She just hung out yesterday and watched movies cause I didn't feel good being prego and all. I am home now and jake is there with her for the rest of the time so you get to read his great wisdom and charm and may I just say I feel I have the greatest husband in the world!
I don't think he will enjoy a dew today cause he said he was cutting back (wink, wink)!

big bag of chemo

I woke up this morning to find chloe hooked up to a monsterous bag of high dose chemo, boy that set the mood for the day. She is on meds for nausea and so they make her a little loopy and tired. She is sleeping and sleeping. She has to go pee every two hours again so the chemo doesn't stay in there and damage organs. She is gaining weight now, we are excited about that. We still have no idea how long she will take to recover and come home.

Another round

The new central line went in without complications. We haven't been so happy to have a central line. We both didn't enjoy her pic line. We just hope and pray that no infection will make it so it has to come out again. They used the same scar so at least she won't have a thousand scars on her chest. It is a little tender so they are giving her pain meds and now she is just enjoying a micky mouse christmas video. She gets her high dose chemo tonight and it takes 24 hours and then they monitor her and give her a lot of fluids so it doesn't sit in her kidneys and damage them. It also goes out her bowels, so maybe it will get out of her system faster since she goes alot, although it has slowed down tremendously. This will be the last treatment in Nov. So we can enjoy a good thanksgiving, but I am cooking so I don't know how much of it we will enjoy! Our baby is getting bigger and bigger! I can feel him and he kicks really hard sometimes, I have no more space for him so I am sure he is trying to stretch out, not too long now.

It's begining to look a lot like christmas...

Chloe was feeling good today and wanted to put the christmas lights on outside. I know it is a little early for this but I want to do it when she feels like doing it and it brings a smile to her face. She helped string them up but gets tired fast and had to go inside. Her little legs don't have much meat on them and get tired easy. She is loving all the eggnog she can drink. Her crypto and c diff is getting better her stools are getting to be normal shaped! Her anc counts dropped fast in two days , but she still is having fun being home. She is looking forward to getting her pic line out on monday. We will be there for 3 to 5 days depending on how well she takes the treatment. Most days we dream of a normal life, but I know someday that will happen. We have been at it for so long, I get tired. I am just glad she is not bed bound like at first. I will let you know what happens on monday.

home home on the range (chlo likes that song)

We were able to come home today!! She is feeling good and we were able to get some fresh air. She wanted to help put up christmas lights but I have to go buy new ones. She is only on three antibiotics and they seemed to give her the right one this time cause her pooh is no as runny! I don't have gestational diabetes!! Another bit of good news. So I don't have to worry about that. We go back on Monday for some more intense chemo and will be there for 3 to 5 days depending on how well she does. She will also get her pic line out and a central line put back in. I bet she never thought she would be glad to get a central line. she is though she hates the pic line. I am glad to have a couple of days at home and to have chloe not hooked up to anything.

a bit of good news

Thanks to all your prayers chloe's ANC counts went from 0 to 3.5!!! Which is huge! I know that if it wasn't for your thoughts and prayers in her behalf they wouldn't have been able to jump that high. She is very excited because she doesn't have to take nupigen(?) shots. She is off 3 of her 9 antibiotics and 2 of them were IV so she is free today. No IV's hooked up to her line! We are still waiting to hear about one test they took about her bum so I don't know if it will be tommorow to come home or what. Her CT scan was normal! So we had good news this morning! Thank you, Thank you, Thank you!

Today was a day to decide which of the 9 antibiotics she can come off of. The docs got together with the infectious disease people and said look she is on 9 of them are there any she can come off of. She had a CT scan today to see what is going on in her rectum area, she is off the the nafcillin which is the continuos drug for the staph infection so she is free from that!! They will know more about it tommorow after they look over that CT scan. We had fun scrapbooking some of her pictures together today, it was really fun. She had a pretty good day except she was really tired and about 5 oclock she had to drink 3 cups of fluid for the CT scan, had her shot, and got her dressing changed all in less than an hour. She was free from her IV pole for 2 hours and she was excited going over to the window of the room and trying to scare the nurse out in the hall. She is devouring the harry potter book. We only have few more chapters left and she said last night, I sure like harry potter. We will know more tommorow. And no news on my test for the diabetes.
Today I am pretty sure Jake ate a wendy's chicken sandwich for lunch and most likely he drank a dew and enjoyed it. (haha)

Lazy Sunday

nothing really new today. Albumin is low so she got a transfusion. White blood cells are up just a bit, but immune system is still 0. She still gets morphine from time to time because of the sores and discomfort in her bowels. Most of the time she is real chatty after the morphine which is a nice side effect. We were up real late last night after she had an injection talking about all kinds of things from the Barbie Pegasus movie to everything that we have for thanksgiving dinner. I did not realize that a pegasus is a unicorn with wings, but a unicorn is just a horse with a horn on it's head. It was a good opportunity for me to brush up on my mythical creatures and discuss the various types of potatoes that we might eat at Thanksgiving. Really, anytime i can just hang out and chat with one of my girls is a good time - doesn't matter what the circumstances are.

She's getting ready for christmas now watching Rudolf and Frosty the Snowman. Must take after her mom. If i know my wife, now that halloween is over the spooky decor at home is put away and i'll probably find thanksgiving decor out when i get home. If not, i'm sure it's on her agenda. I don't know how she finds time for it, maybe it preoccupies her mind.

Code Blue

You never get used to the code blue alarm here. Its the signal for nurses and docs that a patient is in trouble. One just rang for the kid next door and there have been people running toward his room ever since with all kinds of equipment. It kind of freaks you out, but also makes you grateful that it's not your room they are running to. No matter how tough you think you have it, there is always someone worse off. In a place like this it's real easy to remember that. Schneikies, just as i write that another code blue alarm in another room. Poor kids.

They ran some tests on Chloe's stools and she not only has Crypto now, but something called C-Dif. There is a fancy name for it, but of course i can't remember. Both crypto and C-dif are hard to kick. Hopefully some of the new antibiotics will work. She was able to get rid of the staff infection she had, but these bacterias in the bowels are tough. Despite that, she's been in good spirits most of the time. She just got another blood transfusion as her red blood cells were low; hopefully that will help her feel a bit better. Looks like we'll be here for a while since her ANC (immune system cells) are still 0.

I had an apple this morning. It looked like a wonderful apple sitting in the basket with all its fruity friends, but it was deceitful. Despite it's ripe appearance, it was very hard and I couldn't even bite into it. I was displeased and promptly threw it in the trash.

Back in SLC

Chloe started having some fevers late last night and woke up with some intense pain in her bowels. Sounds like she has open sores (kind of like canker sores) on the inside of her bowels, which can't be comfortable, especially when you already have crypto causing a lot of diarrea. Crappy deal is you ask me, no pun intended.

Once we got here to the hospital and she got a little morphine for the pain, she was doing much better. A relief since she cried all the way from Logan this morning because her bum hurt so bad. The sores are a side effect of the chemo she was given every day last week and are pretty common to have. She had them all over in her mouth too a couple of years ago during her first battle. They changed one of her antibiotics to treat the sores and accidentally gave her twice the dose she should have had. Hopefully it won't cause problems. No going back when it's injected into your blood stream. We won't really know if it will cause any problems until tomorrow when we get some test results back. Her counts are still 0, so i think we'll prob be here for a few days at least while her immune system builds back up and she fights off these sores.

No word yet from the tests Stacie had to take today.

dreaded shots

I gave Chloe a shot at home for the first time by myself. We were a good team and after she screamed and cried I did it! Then after I cried we had a big hug. I am not going to get use to that. She did really well though, no wiggling or kicking. I told her we are a team and we will get through this. She is good at being talked into doing things she doesn't like. Her blood will be taken today and we will see if she has to go down to the hospital or gets to stay home. I have to go get tested for gestational diabetes. I heard this news yesterday and thought 'when can I go and get tested for four hours when I have a sick child at home. And what if she has to go the hospital?' I wonder if I did the test wrong cause an hour before I drank the drink, I had orange juice for breakfast. I don't know if that would effect the outcome. Anyone know? Well I might have to do shots into myself, good thing I know how.

irregularity

Halloween was a mostly good day for Chloe, once she got her shots and whatnot out of the way. I wish i was there to help, although Chloe prefers mom to do that kind of stuff so i probably wouldn't have been able to help much. Chlo was a little irritable when grandma and grandpa came to visit and refused to talk to anyone. She did wear her princess costume most of the day though. I tried to get her to at least walk to the next door neighbors to trick or treat but she was just feeling junky and didn't want to go. So I took Addie and Elsie around the neighborhood for a while. Addie was a snow princess and Elsie, a little witch. Elsie was having fun cackling and riding her broom, but her tights kept falling down because she has a skinny bum. It was pretty funny really. Addie was a sweet big sister and took an extra bag around to all the homes so she could trick or treat for Chloe too.

When we got home, Chloe was feeling much better and sitting by the front window watching the kids come to the door. She thought that was pretty neat and told me about all the neighbors and what their costumes were. She was really excited to dump her trick or treat bag out on the floor and Addie and Elsie started trading candies with her, reading the laffy taffy jokes, and laughing. It is fun to watch little sisters having a good time together, especially lately. Chloe hasn't laughed that much in a long time.

This morning she's back to not feeling great. We also found out that Stacie may have gestational diebeties. She is supposed to go in for some tests today or tomorrow. Not sure what today will bring... but bring it on.