Sunday, August 31, 2008

Day 16!

Today when Emily woke up, she immediately wanted to paint our clay pots we made yesterday. As we were painting, I thought it would be fun to paint Emi's head. We put a rainbow, swirly, heart, flower, and face on her little head! She said that she was like the grandpa on Meet the Robinson's who says his head is on backwards!

We went outside today! We brought her deer named Mia and her manatee named Amy with us. We found an Ariel rock out by the pond. It reminded her of the rock that Ariel rests on when she sings to Prince Eric. We did mermaid poses on the rock. We also played in the gardens. Emily collected twigs with her deer. After she had a huge handful of sticks, she went and played in the water with them. She was fascinated with a random seashell that was in the pond. She kept asking how it got there. It was pretty funny! Emily also fed french fries to the birds. She would run up to them and throw the french fry in the air. Some of the more curious birds went and grabbed it then flew away, while others just flew and missed out on a special Emily fry. As we were walking back, she was singing and dancing to "Skip to my Loo". It was very cute!

Sister Holladay and Thomas came up for Primary. Emi sang the "Cancer Song" and "Rock and Roll Give said the Little Stream" for Monica, Thomas and I. Then we had a lesson on obedience. It was a perfect lesson for her!

I'm sure Monica was relieved when my parents came up! She wore us out! I had a blast with Emi today! We certainly had a fun adventure! I can't wait until she comes home! It will be a very exciting day when she gets to leave the hospital! You can tell that she is sick of the hospital and is anxious to come home and be with our family AND Leo, ( he's our dog).


Saturday, August 30, 2008

Day 15!

Today Emily played outside for about an hour! She walked in the gardens and threw sticks in the pond. The only thing she didn't like was her mask. Emily said that it was too sweaty! She was very excited when my dad told her that she could lift her mask up and take a breath when no one else was around!

Today Emily gave a call to our neighbor who may have to go through a bone marrow transplant. She told him to be brave! She told me later in an excited voice that ,"Brother Richards gets to have a bonemarrow transplant, just like me!" I thought that was pretty cute for her to be excited!

I came later with my Grandma and Thomas to come visit her. She gave us big hugs and told us that she was waiting all day for us to come! We played Webkinz with her, she thought that was pretty cool! The Carlson's also came up and visited her, and later the Kents stopped by. Emily had fun with eveyone that came today!

I get to stay over tonight! After my family left, Monica came and we made clay sculptures. We also played with bubbles in the bathtub! Emily made herself a bubble beard and said, "Ho, Ho, Ho!" She also wore her princess crown to the tub room. There's never enough times to be a princess!

Emily got in trouble by the nurse because she was starting a movie at 10:30 at night. She told Em that she needed her sleep. Of course Emily is obeying 100%, right! She's finally laying down at 11:30! Oh well!

Emily is enjoying herself as much as possible, but can't wait to come home! I wonder what adventure's we'll encounter tomorrow?


Friday, August 29, 2008

Day 14-A little freedom!

Emily's ANC was up again today so official engraftment was day 13, Thursday, August 28, 2008!!! Emily got to go outside for the first time in almost 4 weeks. She was dressed in her princess gown ready to go when she took some medicine and ended up throwing up all over! No need to fear. You can still be a princess and wear your Tiara and necklace right?!

It was so fun to see her excitement as she walked through the doors. She kept pointing at all the birds and looking in different directions. She touched the water at the wishing pond and began to giggle. My heart melted as I watched her dance in the middle of the walk way. Everyone was staring but she didn't care one bit! She felt so free!

Every nurse that walks in, keeps asking when she gets to go home. This has been hard for Emily because she hears this and wants to go home right now! They have taken Emily off most of the IV meds and are seeing how she does with taking them orally. She hates to take so many medications by mouth but she is highly motivated with knowing she can go home when she does. She threw up this morning but didn't give up. She agreed to try the pill form(4 for one dose!) and was able to keep them down. We are also seeing if she can eat and drink all on her own.She is doing pretty good so far. She isn't drinking very much but they say this is normal. I am leaving to go to the "Swim for Emily" event and promised to take lots of pictures so she can see all the people who love her. Thanks everyone. We love you all


Thursday, August 28, 2008

Day 13 Engraftment Day??

Emilys ANC was 1600 today!!!! If it is still up tomorrow they will count today as Engraftment Day! She is doing really great. We are hoping to bring Emily home next week sometime if her counts look stable and she is able to eat and take her meds without any difficulties. It looks very positive but we are not telling Emily until the day she gets to come home. Why? We don't want her to get her hopes up and then end up with a fever or something else which will keep her in the hospital for longer.This would devastate her.
She has had a stomach ache tonight and her pants were actually bothering her tummy. For those of you who know Emily this is very different for her since her pants are usually falling off her! Her tummy is very tight and swollen. We are hoping it is because she is getting TPN(food through her IV) and eating real food; which is probably too much for her body to take in. They are going to take her off the TPN tomorrow to see how she can do on her own.
Mike came in to play with Princess Emily today-(all the nurses kept peeking in our window to see how cute Emily looked. She kept telling me how much she loved her "gown" and that she wants to go to a ball!) Mike helped her make a face for her IV pole. It is now her paper prince! It is very cute. He also brought in one of her favorite drinks-chocolate milk, as well as a variety of different cups. they had a great talk about how yummy the chocolate milk is and that it tastes exactly the same is each of the different cups. The outside just looks different. Even though Emily looks different on the outside than she used to, she is still Emily. I am so grateful for children's hospitals and the Childlife specialists who take time to be there for my sweetheart.
I was very stressed last night and this morning thinking of all that needs to be done and not being able to start on anything since I am up here! My sweet friend Angie took charge and got a cleaning crew all set up for Saturday morning. This takes such a load off my shoulders.I feel so much support from everyone. Now If Emily gets to come home next week we will be ready! Matt is also staying home tomorrow to get things done. I am so grateful for him and all of his help. He and the the kids have done such a great job of taking care of things at home. They have been so amazing! Jacqueline and Thomas get up on their own make their lunch, do their jobs and are on time for school without any prompting from mom or dad! They have really stepped up. (Matt's trying to follow their example!)Ha Ha
Wish us luck for tomorrow--maybe I will be able to take Emily outside!

Wednesday, August 27, 2008


Yesterday Emily's counts were at zero. Today her ANC(absolute nutrifil count)was 400!! This is very exciting because this count needs to be above 500 for 2 days for her to go home! The doctors were shocked that the Nupigen took so well! They said it must have been a "super dose". I can't believe how great she has done through all of this. I keep reminding myself it is not over but the thought of going home and starting that new chapter is so exciting! It is possible this count will go down again tomorrow but most likely with the Nupigen is should be at or above 500. We have been hearing different opinions on what this means with going home but if she continues to have no problems it looks like next week or even this weekend. This actually stresses me out because the house is not ready and the carpets have to be cleaned at least 3 days before she comes home!
Jessica Madsen came and played with Emily tonight so Matt and I could go to the Temple. It was amazing. I haven't been to a live session for about 10 years. It was so beautiful. I have to admit I had a hard time turning off my brain; I kept thinking about all the things I need to do to have the house ready. Of course my sweet husband filled me in on all the new things he learned tonight. He is so close to the spirit. I love learning from him!It felt so good to be together in the celestial room. We feel so much peace and comfort that everything is going to be OK.

The Johnsons and the Jones come up this morning just in time to play hospital bingo. They had a great time and all of them won a prize!
Julie and Amy Carlson came to play too. Amy and Emily played Webkinz together and then Emily played it with katie West over the phone. Isn't the Internet amazing?
Last but definitely not least, Uncle Wade flew in from Arizona and surprised Emily with so many fun gifts and he even did magic tricks!(She kept trying to get me to create more bunnies Wade!) They gave Emily a beautiful princess dress and Aunt Monica made a gorgeous necklace. Emily felt so beautiful! She wouldn't take it off until Matt spilled milk all over it. I had to promise I would wash it tonight so she can wear it tomorrow!
Wade not only spoiled Emily but took Jacqueline and Thomas to the Cheesecake Factory. They had such a great time! They even ate Octopus and liked it! Thanks Wade!
Wish us luck with the counts tomorrow!!!

Tuesday, August 26, 2008

Day 11

Emily enjoyed wearing her princess crown and painting her jewelry box today. It never ceases to amaze me that I have never heard the words "I'm bored" come out of her mouth! She keeps herself very busy with all of her coloring, painting, making clay creations, etc. etc. etc!

When it came time to do some school work she wasn't so cooperative! I am going to have to learn some better skills on how to motivate her.I tried to do the love and logic thing and act like I didn't care. (This is harder than it sounds! It was driving me crazy!) I told her it was fine if she didn't want to do school. She could choose, but there would be no TV or coloring until she did. She was pouting on her bed and people kept walking in wondering if she wasn't feeling well. I laughed and said "She is just fine she just doesn't want to do school for sooo long!" (A whole 30 minutes!)I kept telling her that if she were in school with her friends she would be there all day! I was very glad when Daddy came in and saved the day. It's always fun to do things with Dad!

The doctors started Emily on Nupigen today. It is a drug that is supposed to help boost her immune system into action. They haven't seen any activity so they are hoping this will do the trick. We are so happy she is feeling so well. The doctors are saying she is doing fantastic.
Thanks for all of your thoughts and prayers on her behalf. We love you all!

Monday, August 25, 2008

Day 10

Today was full of fun and excitement! Emily started the day with her Art show debut! Emilys idea for a patient contest became a reality today. Mike, the child life specialist brought all the patients artwork in for Emily to "judge". She decided that everyone would win! It was so fun to see how good it made her feel! We let her take her picture and hang it up with the others in the hall. She was so excited! Emily got to meet a dalmation dog named Armstrong. He loved Emily to pet him. Emily also got to play with her friends Hailey and McKayla. They giggled and laughed while making flowers and microphones to "talk" with eachother. Emily was so happy! She had fun making a princess crown and coloring with The Allreds. "Becky is so fun!" Last but not least The Batemans came to see Emily tonight. They have the cutest kids!Emily even got to hold both Adaline and Eliza at the same time! "They like me mom!" yes, everyone loves Emily! We had so much fun today. It was so fun to watch her playing, laughing and enjoying life. I have learned to cherish the days when she feels like herself. They are priceless. Thank you for sharing this wonderful day with us. -Jill

Sunday, August 24, 2008

Day 9

Emily woke up to the smiling faces of the Parish family! Nicki read a book to her and Uncle Jeff helped convince her to take her medicine(thanks Jeff!) Melissa, Emilys cousin stayed with her last night and today. It was not an easy task. Emily was very upset when we left her last night and it sounds like it carried over into today! She wouldn't let Melissa help her with anything and was actually pretty naughty! I know Emily is usually so perfect shocking isn't it??? We had a talk about how important it is to be kind, even when we don't want to be. It is hard when you don't feel good and you want to be with your family. (We could let Emily get away with any excuse in the book.) I told her that her job while she is in the hospital is to be NICE! Even when she doesn't want to be. I was reminded when she was a baby and was taking steroids; she was very agitated and uncomfortable all the time; I had to hold her constantly. I realized today that not only is she wanting to be home with her family, Leo, and friends,but the steroids are making her feel more irritable and ornery too. I am sure it is hard not to feel like yourself. I guess patience is key. Thank goodness she had nurses today who teased her and gave her a hard time back! In fact, "someone" put a "U" for University of Utah on her door on top of her BYU sign her cousin Mandi made for her! She was very upset to have a "U" on her door! I am sure the nurses had a great laugh. Sister Holladay came and gave a wonderful lesson on obedience and sang songs. She even had Melissa,my Uncle Brent and Aunt Elaine join in. Emily enjoys these visits so much. She reminded me tonight before going to bed to make sure she gets the sacrament next week. "they were supposed to come mom!" she knows how important it is. I love that! Hopefully Melissa isn't scarred for life and knows that Emily does love her. I am hopeful her cousin Monica won't be too scared to come next week! I learned a great lesson today while teaching Gospel Doctrine, I was describing how Emily has been so itchy, I talked about the night we prayed and the itching went away and I talked about the next night when the prayer wasn't answered in the same way. Emily asked me the next day why Heavenly Father didn't answer our prayer. I told her he always answers them it's just in different ways. I realized through our discussion in church how Emilys prayers were answered. She has been getting better everyday. I watch her still itch a lot but I know the Lord has given her strength to endure this trial better. She is asleep as we speak! (I told her I knew she could do it since she did it with Dad!) I am so grateful to be learning so much. It is really a blessing to be able to study the gospel and discuss different subjects with such amazing ward members! I really don't know what I would do without the Gospel in my life! Jill

Swim for Emily

Crystal Hegemann, a friend of our family whose son swims with Jacqueline on the swim team said she wanted to help us out by doing a fundraiser. Her own daughter is required to take high-cost medicine, yet she seeks to help another family who is in need. She’s a great example of Christ-like service and the miracle of service, in that when we lift another’s burden our own burden becomes lighter. A small organizing committee was formed with friends and a great fundraiser has been put together. It’s being called, “Swim for Emily” and is being held this Friday night from 8:00 – 10:00pm. It’s at the Lehi outdoor pool (451 E. 200 S.) If any of you would like to bring baked items they will be having a sale with all the proceeds helping us cover Emily’s medical expenses.

This is the epitome of love and hate. We love the love that’s being shown to us, but we hate being the center of focus for such an event. It’s so much easier to be on the giving end of things. Nevertheless, we know that humility must prevail and that help is truly needed. Crystal and others helping with the event, we thank you from the bottom of our hearts and hope that your own needs will be taken care of as you are helping with ours.

Day 9

When we attend Church together something miraculous happens quietly behind the scenes. The words that keep coming to my mind are, “The healing power of the Sabbath day”. Sunday has become more sacred to us during this time in our lives. We each look forward to attending Church to literally help gain strength for the next week. Even Emily, being six-years old misses Church and partaking of the sacrament. Today, for some reason she was left off the sacrament list at the hospital and when I talked to her one of the first things she told me was, “Dad, I didn’t get the sacrament today!” I thought it was profound that she considered her day unfulfilled because she felt the difference of not partaking of the sacrament.

Jill is continuing to teach Gospel Doctrine and it has been a great blessing for her. Today as I listened to her teach, the responses from others in class, and the spirit that was present, I realized what a blessing for our ward to hear the Gospel message through a humble mother who is currently dealing with great trials. I’m so blessed to have her as my eternal companion and vividly know that she has made me a better person. I love and adore her.

- Matt

Saturday, August 23, 2008

Day 8, Saturday

Jill accuses the kids of spoiling me when it comes to sleep and in the case of Friday night I have to agree with her. Emily was having a hard time sleeping through the night this past week and was on the path to getting better, but Friday night she slept all the way through, leaving me with a big grin on my face as I woke up at 8:45am, having had the longest night’s sleep in weeks. Perhaps Emily knows I would sleep through her troubles so sub-consciously she thought it better for her to sleep as well. She also awoke with a smile on her face as we snuggled on her bed and looked at the sunlight beaming through the window.

We had fun playing the Memory game, coloring pictures, working on crafts, and watching a silly dog movie. Emily had fun playing with her friend, Faith Merrill. They played Polly Pockets and other girl games that were beyond a father's recognition. Lisa and Cassie Hartle,Uncle Steve and Aunt Sherry also came to visit and help her smile.

She wasn’t happy when it came time for us to leave. It’s always hard on her when she see’s mom, dad, Jacqueline, and Thomas walking out the door, even though she loves the grandma, aunt, or cousin that’s staying with her. What she doesn’t fully realize yet is how hard this is for us too. It tears us both apart, but Jill and I feel strongly about the need to provide one day of “normalcy” each week for our other kids. It’s hard to say “no” to one child so that you can say “yes” to your other children. We pray that Emily will feel the comfort and peace that come with the Spirit. I know she is being supported beyond her own capacities.

- Matt

Friday, August 22, 2008

It's Friday!

I look forward to Friday night all week. I get to spend the night with Emily on what we call an extended "Daddy Daughter Date" where we get to sleep over together and spend Saturday morning playing together. Tonight we played with clay, took a bath, sang some songs, and then I found myself in the listener role.

Emily talked about missing home and how hard it is to be in the hospital for so long. She misses all the simple things. All the things we take for granted. She misses walking through the door and having her brother or sister there to say hi, she misses a snuggle with her dad and a few licks from her dog (that mom never approves of), she misses her mom welcoming her home from school, the smell of her home, the feeling of her bed sheets, the security of knowing that she's in her room and that she's in control. Emily's life for the past three weeks has consisted of one room, one hallway, and one bath tub. As she expressed her emotions she was in a sense saying, "Dad, do I really have three more weeks of this??"

I suppose it might be like having Tigger bouncing around the Hundred-Acre Woods and then putting him into one room and telling him this is his life for the next six weeks. The good news with Emily is that she hasn't lost her bounce...

Despite all these things she still manages to make others smile with her positive attitude, willingness to do the hard things, and her desire to do what's right. At the end of today she was tired and ready for sleep, but she still wanted me to read her a story in the scriptures and offer a short prayer. Even though it was short, it had the necessary components for her, a prayer of faith to get better and an expression of gratitude for Heavenly Father watching over her. I hope you don't mind me sharing but I wanted to remember her innocence, faith and gratitude years down the road so I recorded the sound and have posted it below.

- Matt

Day 7

Emily woke up happier and more at ease with things today. She decided to have a patient contest in the hospital. The child life specialist thought this was a great idea and thanked her for thinking of it! There is going to be a wall where they are going to display all of the patients artwork for people to see. She is so excited!
Emily had a great time teasing and playing with Megan Gazaway this morning. It was fun to see her in such great spirits. The Jones came up and played for a while too. They had a great time playing webkins on the computer.

Emily enjoyed working on school stuff her teacher brought up yesterday. I think it makes her feel more like she is in school like all of the other kids. She likes being a 1st grader!

It was fun to see her smiling and having fun with friends. This is really what she needs to heal. She talked to her friend Kaleb and her cousins, Justin and Gracie on the phone.(It is so cute to hear their conversations!) I was so proud of her to see her with a smile on her face when her friends came in the room. She didn't even shy away at all. I think it put them more at ease too. Sister Holladay, She is letting her light shine!

- Jill

Thursday, August 21, 2008

Day 6

Today Emily woke up to see the Kim and Shelly Struthers! She thought that was so cool to wake up to visitors! They were the first to see Emilys "new do" and they loved it!

Emily was sure that no one would know who she was without her hair; but sure enough everyone still knew she was Emily! They all told her how beautiful she is.

Mrs. Moore, Emilys 1st grade teacher at Sego Lily came to visit and bring some school stuff to work on. Emily was very nervous about meeting her but quickly warmed up and became very excited with all the things she brought. She even got get well cards from her new class! 1st grade is going to be lots of fun!

Emily kept telling me today how "scared" she is. All of this is a lot for her to take in. So many changes! I kept hugging her and tried to tell her everything would work out. The unknown is scary for us all at times. I think it is just going to take time to get used to and for her to see that everyone still loves her for who she is and not for what she looks like. I keep praying that I will know what things to do and say that will comfort her the most.

Emily is really doing well! She has no mouth sores which is a miracle, and her rash is almost gone. Even the itching has calmed down a bit. Headaches come about once a day but that's it! We feel very blessed!

Introducing...Emilys new "Do"!!!!

Last night we were about to go to bed when Emily put her hand through her hair...She came out with a bunch of it in her hand! She thought this was very funny so she kept doing it till she had a big pile of hair all over her bed! Emily has known she was going to lose her hair so she wasn't suprised. In fact she has been very worried that people will laugh at her. Instead of being sad about losing her hair she decided to make it a fun and memorable event!
After pulling it out for a while on her own, we realized if we didn't shave it off she would have hair all over her bed and this would make her even more itchy! When nurse Natalie came in with the razor she was nervous because it was so loud. She was so brave and watched in the mirror as she did it the whole time. It was so cute to watch her smiling melted my heart to watch her have such an amazing attitude.(I had to go out in the hall and do a little cry myself!I guess it's a mom thing.)

Emily danced around and we did a little fashion show with all of her darling hats that people have given her. She feels so beautiful.I just wanted to grab her and hug her forever!

Emily does worry that people might think she is a boy. Wearing pink won't be good enough, "Because some boys wear pink mom!" So she decided if she wears her cute hats and a necklace she will be OK.

"No one will know who I am mom." We talked about the fact that even though she looks different on the outside, she is and will always be, Emily! I told her that her job is to show people that she is still the same girl who loves to play and have fun like she always has. "Everyone will look and say you look different but that doesn't mean it is a bad thing. In fact they will all think you look beautiful!"

Change is not always easy. Emily has a lot of changes happening and she is just 6 years old. She has such a strong spirit! Her prayers are so incredible to listen to.I am realizing the things she will be going through during this next year will have be done on her own. I can't take away the hurt she might be feeling, no matter how bad I want to.I am so grateful she knows that Jesus will always be by her side to help lighten her load. The Lord has a great work for our little angel. She has already made such a difference in so many lives and I know she's not even close to being done. I am sure that the things she will learn this year will help her for the rest of her life! I am so lucky to be her mom. She teaches me so much!

Emilys hair started to fall out by the handful! She had a whole pile of hair all over her bed!

Wednesday, August 20, 2008

Day 5

Did you know that animal planet has shows on all night long? Emily and I found this out last night as she was, yes, you guessed it ITCHY! As I was laying with her at 1:30 am I started to laugh so hard. The nurse and Emily thought I had lost it! (which isn't far from the truth).

As we all know, prayers are answered in many different ways; About 12:00am Emily asked if we could have another prayer;it didn't work like the night I figured there must be a reason we were still awake...something we needed to learn. Maybe lots of patience? (This has always been a weakness of mine.) The nurse suggested cold packs so thats what we did; she had 5 cold packs placed all over her body. We lay together in her freezing bed watching animal planet, which was a nice distraction, even though she was very upset when she realized that animals eat other animals to survive. Ha ha!Emily finally relaxed enough to sleep around 3:00am.

I am sure this itchy problem will be over by Friday because Matt is coming. He has the magic touch! The nurses even make up his bed for him when he comes! I am positive Emily won't be waking him up. Or maybe the nurses will take care of everything because they know "he needs his sleep"(as his mom used to always say!) He deserves to be spoiled from someone since I am not so good in this area. Ha ha.

We had a nice day full of reading books, hospital bingo,coloring, and painting. She enjoys going through all the fun coloring and activity books she has been given.They help really help pass the time. It's amazing that even when she isn't feeling well, she can still find the energy to color!

Tuesday, August 19, 2008

Day 4

If anyone is wondering, Emily now has the very cutest room in the whole hospital! Thanks to the Young women in our ward who helped cut out hearts and flowers and letters to show her how loved she is! Emily was overwhelmed by it all at first but by the end she was putting up hearts on the walls and having a great time! It was also fun for her to see Cambry and Mia who got to come along to help.
Emily stayed very busy today with visits from baseball players from the "Bees", she even got a signed baseball! They asked her what her favorite position was and she said "centers" (meaning, centers in school) they thought she met "Center field"...we played along! She also had time with Aunt Ali, Grandpa Whiting, and the child life specialist, Mike. The music therapist came in and played with lots of different musical instruments..Emily loved doing this. We also played with clay (thank you Shelby and Angee) for about 2 hours.

I am grateful for all of these wonderful diversions to help Emily forget that she is so itchy and not at home, going to school like everybody else. It is nice for her to have things to look forward to everyday.
Speaking of being itchy, last night she woke up at 12:00am going absolutely crazy. after an hour and 1/2 I looked at her and said, "We need to say a prayer." I have always felt Gods presence in my life, but this experience was so amazing! As soon as the prayer was over, I lay down beside her and she actually fell asleep! I feel so incredibly blessed! I was mad that I didn't think to do that the night before! The Lord truly cares about everyone and every thing that is happening in our lives!

Emily is so tough!!! Her blood pressure and heart rate were so high all day. The doctors decided that it is her body reacting to the pain it is in. Funny, even though she has sores in her mouth she keeps saying it doesn't hurt."I can't taste anything" is all she says. Being very cold has been the only other complaint. We think she has lived with pain for so many years that she just blocks it out and doesn't think about it. When they gave her Morphine, things got back to normal. She never ceases to amaze us all! All the nurses adore her; they are always so amazed with how she handles everything. That's our Emily, our red little rainbow! (This is what she wants me to call her instead of red tomato!)

Monday, August 18, 2008

First day of School!

Today was the first day of school!!! Wow we have a 1st grader, 4th grader and a 7th grader! I couldn't miss this special day for Jac and Thomas! I hurried home to suprise them and when Thomas walked in the door he did not look so good. He said he had a headache the whole day. I took his temp and it was 101.4! I felt so bad for him! I took him to the doctor and got him some medication for strep. Hopefully he will be able to go back to school on Wednesday. Even with strep throat he had a good first day. What a tough kid!
Jacqueline had her first day in Junior high!!! I feel very old. She and her friends were very pleased that it was "not as bad as they thought it would be."
It was so fun to be home with them today. I really miss having them around all the time. I miss Thomas' singing and excitement for life; and I miss Jacquelines teasing me for having shorter legs then she does, and her crazy outbursts!
As we sat down to dinner it felt so good to be together for a moment. I am glad I was able to keep the tradition of being there on the first day of school with hot cookies waiting just for them!

Day 3

If you can tell by the picture Emily is VERY red and puffy. The worst part is that she is VERY itchy too! She didn't fall asleep until 5:00 am this morning. Lets just say it was a very long night. When the nurse came in at 7:30 to get her up to weigh her, I put my foot down and said "No Way! I am usually very nice about these things but I don't want anyone to wake her up now!" They quickly agreed and let her sleep. We think we have the itching under better control with meds and some special cream that we put all over her body. She is asleep right now and I am praying it stays that way.
Emily got to spend the day with Grandpa Heaps while I went home to suprise Jacqueline and Thomas on their first day of school. I just had to be there with our traditional cookies waiting for them when they walked in!
Emily told me how she and Grandpa played dominoes and watched movies. She had a wonderful time! Thanks Grandpa!

Sunday, August 17, 2008

Day 2

Today was a really special day. Emily got to spend the day with Grandma Whiting! They got to take the sacrament together and have primary right in her room. Sister Holladay is keeping her promise to Emily and coming up every Sunday. My mom had tears in her eyes as she described the experience! She said it was "priceless". When she and Sister Spencer came in one of the first things she asked was "Did the kids forget me?" It just so happened that they had brought up a bag FULL of the cutest cards from all of the primary children! Emily was so excited to show them all to me. "Mom, look at all of these!" This means so much to her to know that everyone is praying for her and loves her...and yes, remembers her. My mom said it was so sweet to watch them singing together and to have a lesson just for Emi, I can't tell you what this means to me as her mother! She was just beaming from ear to ear!
Emily had another treat today. She had a visit from Aunt Deb and her Great Grandpa Don. She said it was a lot of fun to see them and to play with Grandpa Don.
Emily felt really good today. She is still very red and blotchy everywhere and is starting to show signs of mouth sores. We are praying they don't get too serious. She played doctor with her doll, stuffed animals and of course, grandma. It looked like an operating room when I walked in. She is also very proud of a necklace she made for Jacqueline. She told me to tell Aunt Monica that she can make necklaces too!!! Thanks everyone for making Emily feel so loved today!

Saturday, August 16, 2008

Day 1

As I lay in my bed this morning I couldn't help but feel guilty for enjoying the freedom of being home while Emily is still in the hospital room. It is hard to be in the same room day in, day out. Matt and I laughed when he called and said he was"going crazy" in the room all exact feelings! He said he was feeling sorry for himself for a moment until he remembered that I do this all week long...and then he thought of our real hero, Emily, who can't even take a break to walk down the hall or go outside and feel the sunshine on her face. Emily is being so brave during all this. Every day she sees people come and go while she stays, waiting to get well enough to go home herself!

She cried as we left her tonight; it broke our hearts to say goodbye, we promised to give her pet dog Leo a hug for her.

The day of transplant is called "Day 0" so, today is Day 1. According to the Doctors, the first 100 days are the most critical. These are the days when Emily will start to engraft and create her own bone marrow to carry her throughout her life. They are critical because of high risk of infection and of Graft vs. Host (GVH) -this is when Jacs immune system will start to attack Emily because they are in foreign territory! This most likely will happen but we are praying it will stay under control. GVH can attack the liver, kidneys and other vital organs.
We will be in the hospital till Emily has engrafted (meaning she is taking Jacqueline's bone marrow as her own). when her ANC (Nutrifil count) is at 500 she will be able to come home and finish the healing process there. Emily has a calendar on her door where people can make their best guess as to when she will show engraftment. This usually takes place between days 18-25. As we all know, Emily is not usual in any way, so she may surprise us all!

If any of you would like to include your guess as to which day she'll engraft feel free to add your comment and we'll add it to the calendar.

Today was very uneventful. She spent all day with Dad coloring and making crafts. She is more red than usual from all the red blood cells she received and she is getting the "moon face" that comes from the steroids.

I changed the dressing on her central line which was a great accomplishment! It is much easier now than when she was a baby and we had to pin her arms behind her back to do it.
It is getting harder to leave her because she wants to be home so much. Grandma Whiting came to spend the night with her and Sunday as well. This is a blessing for the rest of us to attend church together and create a sense of normalcy for Jacqueline and Thomas (mom and dad too!).

We don't know what we would do without such a strong support system. Many of you who are reading this are part of that support system for us. Thank you!

- Jill

JACKIE has a blog

If you are wondering- the heaps family blog is not going private! Jackie, her daughter has a private blog.

Friday, August 15, 2008

Emily's Bone-Marrow Transplant

Emily started her day with a very bad headache and fever. I put my face next to hers and she said, “Dad, I don’t feel so good.” I then told her, “I love you” and she responded back, “me too…” She was also anxious about this strange procedure called a bone-marrow transplant that everyone has been talking about. Even though she’s been told by many that it wouldn’t hurt her, she still showed visible signs of anxiety, which is to be expected, especially for a 6-year old. At this time, Jill scooped her up in her arms and Emily’s face quickly relaxed because she suddenly felt safe in the arms of her mother.

At 3:00pm the bone-marrow arrived in a cooler and hung on the IV pole. As the marrow was making its way through the tubing the staff came in and sang “Happy Bone-Marrow Birthday”. As Emily’s attention was diverted to the crowd in the room the bone marrow silently crept its way into Emily’s blood stream and entered its new home. Emily was at ease when she realized the transplant was underway and it didn’t hurt! For all intents and purposes, she received the new marrow as good as we could hope for on the first day, but the real work comes in the next 100 days.

I snuggled with Emily tonight and thought about the blessing of modern medicine and the opportunity we’ve been given with our daughter. I hope we can repay the Lord for all He has given us and our hearts go out to those families around the world that may not have the same opportunities. Emily’s fever has left and she’s now sleeping peacefully with a new lease on life. Yesterday I thanked her for being born without an immune system because it has brought so many blessings to our family. She looked a bit perplexed but I trust she will understand more fully in the upcoming years.

In her prayers tonight she thanked Heavenly Father for all her blessings and then asked Him to help her feel better and be healthy and strong so she can go home. She misses home and her family more than anything else. I thought it was interesting that even for a 6-year old, when life is pressed, everything else falls away except for God, family, and friends. Thanks Emily, for the great reminder of what’s most important in life.

- Dad