Day 45

Emily had such a wonderful day today! She started out by going to gymnastics. I seriously have not seen her smile like that since last week at gymnastics! It is so amazing to watch her light up as she moves and stretches her tight little body.
This afternoon I had to run to the store for a few minutes and when I came home Emily had roped Thomas into being her prince. They were dancing and laughing together. Thomas was being so sweet to her! It is always such a gift when you see moments like that!When I went down to her room she had every church dress out on the floor and said, "Mom, I never get to wear these anymore so I missed them!" She then asked me if they were "gowns". I told her that yes they were definately fancy enough to be called gowns!She also asked if we had ever gone to a Ball before...too many princess movies? Maybe! It's always fun to dream!
I decided to help Emily out a little with her growing anxiety about playing with friends because she has not seen them for so long. I invited (without her knowing) Katie West over after school. About 5 minutes before she came, Emily heard me on the phone talking with her mom. I had to tell her Katie was coming over. She had a very panicked look on her face. I looked at her and told her she would be just fine and she was going to have fun!
As soon as Katie walked in and treated her the same as she always has Emily was able to relax and everything was great! Katie has always cared so much about Emily. She is 2 years older and she has always been so patient and kind. They went on a bike ride together which was so good for Emily to be outside. It made my heart melt as I watched them ride off because Emily knew she was safe with her friend.
When they came back, they had stopped at Katie's for a movie; Emily made sure to tell me she wouldn't go in their house. She also said she needed a drink "because they didn't have any clean cups at their house"...if you Know April West you would have been laughing your head off like me because she is one of the cleanest people you will ever meet! Katie said, "Yea, my mom didn't want Emily to have one of our cups because my brothers always touch them and our dishwasher isn't that good." Leave it to April to be so sensitive to Emily's needs! I can honestly say I don't think anything could ever be "really" dirty at their house!
I am so glad she had this play date. Hailey Bohrer saw them and joined in on their bike ride. Emily really enjoyed herself and felt very comfortable with her friends. I am so grateful for the sweet children in our neighborhood!

Day 44

The Bohrers came to visit Emily! She was nervous at first but soon she was laughing and showing Hailey her school room and bedroom!
Grandma Whiting came during church today. She asked Emily if she is excited to be able to go to church again and she said, "No! You have to keep your mouth shut the whole time!" Well, for now I guess it's a good thing she'd rather have church at home! Grandma tried to help her make some plastic molds....it didn't work out too well because "the instructions were soo WACKO!" We all had a good laugh! Thanks for trying mom!
Sister Holladay is going to keep coming over to teach Emily for the next few months. We feel so lucky! I walked in from a meeting and heard Emily and Sister Holladay singing primary songs. It was like two angels singing! It is so wonderful to have such a dedicated teacher!

Day 43

Having fun at Thomas's football game! Don't you love the cowboy hat?

Day 42

Apples, Apples, Apples! Today we celebrated Johny Appleseeds birthday by doing lots of stuff with Apples! Emily got to paint with apples, make ornaments with a cinnamon and applesauce mixture, and last but not least, Emily made applesauce cookies for Mrs. Moore. She had lots of fun getting dirty today! I kept thinking how crazy it would be to do these things with 25 kids. Teachers are amazing!

Day 41

Can you tell Emily enjoys Diamond Princess? I don't remember any movie keeping her attention for so long. She has definitely slowed down these days!
She has been feeling great! I really can't believe how blessed we are. It is so wonderful not to have her feeling so sick and miserable all the time.
She is starting to get a few hairs growing on her head and a lot more dark hairs on her face! She has a uni brow and a mustache but Matt is taking care of that with his electric razor. Why not help her out, right?! The hair growing on her face and probably the rest of her body(except in the places we want, like her head) are caused from Cyclosporin. It is a anti-rejection drug that if all goes well she will be on at least till the springtime. Last time she was on it for 2 years and we called her our little monkey. It will be interesting to see what happens.
It was the school carnival tonight and she told me that Thomas and her friend Cambry would be there for her. I thought this was so cute! She really handled it well even when Cambry told her how much fun it was going to be. She was excited when Cambry told her she would win a prize for her. Wow, I wonder what it will be, those carnival prizes are so wonderful you know! Ha Ha

i love the barie and diamond castle it my favorite movie and i lkie it a lots i wish i can watch a lots

today mia is ging to bring the movie of the barbie and diamond castle and i play with the barbies and the build a bears and i had ososososososos fun

Thomas recieved his Bear!

Thomas is officially in Weeblos now! The Bears tried to keep him but they lost the tug of war.

Day 39

today i watched barbie and the diamond castle and my favorite part of the movie was when the too boy were sing the song that said bebause were soso handsome and when the one of the boy said i like that guitar and when the boy said were twins and when the puppies were daning and the princess and there names were liana and alexa and the puppies names were sparkles and lily and slyder and lydia and melody and the old woman!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Emily went to clinic today. She is doing great! She did have some tests done on her urine because she has been going potty like a crazy woman! I have to wake up 3 times a night to take her to the bathroom, and change her very full pull-up! This is not normal for her. It is better than having her wake up soaking wet; but it is very tiring for both of us. We wondered if diabetes was setting in but the tests showed normal. The nurse said that they found blood in her urine though. We are thinking it is the BK virus--don't know what that is? I don't either but, I guess it is common for bone marrow kids to catch it. The best thing to do is drink lots of fluids and flush it out. They can give her some meds if she is in pain but so far she acts normal other than being very thirsty. The great news is that we are dealing with this at home!!!

Day 38

Emily had her first day in her private gymnastics class with Heather Austin. As you can see, she was all smiles! She kept telling me to take more pictures and videos. She got in the car and said, "Wow mom, that went so fast! It was so much fun!" I am glad because she needs to do something to stretch her body out; her spine and neck are so tight! Heather gave Emily private lessons during the first time around too. She has been so good for Emily. She is very talented in knowing how to work well with her. I know it is a sacrifice for her to take time to do a class just for Emily and have everything clean. Another example of our amazing friends and neighbors helping us make the best of our situation!

Emily got to spend a few hours with Sister Holladay while I got my haircut. They made clothes for wooden bears and Emily had fun making a hat for Leo...he was very patient!

Day 37

Emily got to go to Grandma and Grandpa Whitings today. It has been about two months and she couldn't wait! She felt right at home when she walked in, getting all the coloring stuff out and playing with the dress-ups. When Morgan, their next door neighbor came over Emily ran into the other room. She was very nervous about seeing her when she looks so different. It broke my heart to watch the fear on her face. We encouraged them to play with the dress-ups and within 10 minutes they were playing like old times. I was reminded once again how fragile Emily is right now. It is so good for her to have positive experiences to help her gain more confidence.
Aunt Debbie stayed with her today while we went to church. It is hard to leave her behind each Sunday...It will be so wonderful to have her with us again. She doesn't mind too much though because she gets to have lots of fun with people who love her!

Thomas is 10!!!!!!

We had a wonderful Sunday celebrating Thomas' birthday! I told Thomas how lucky he was to have a birthday on Sunday because he gets to be with his family ALL day!(I am not so sure he agreed!) We went to our Whiting Family Home Evening at Grandpa and Grandmas. We were very bummed the Parish's couldn't make it. Thomas picked Chicken Alfredo for dinner and Oreo ice-cream cake for dessert. When we got home Angie Johnson made a whole pan of cinnamon rolls for him!!!! His sweet tooth might be satisfied for a day or two!
I feel so lucky and blessed to have Thomas as my son. He brings so much light, laughter and fun into our home. I love hearing him sing at the top of his lungs, I love seeing him read like a crazy man when he has a book he loves, I love how kind hearted and sensitive he is towards his sisters, I love his amazing bear hugs and kisses-my day is never the same without them! I can't believe it's been 10 years. I am so grateful to have him as my son. He teaches me so much! I love you Thomas!
-mom

Jacqueline suprised Thomas by painting a "Y" on his wall. He was so excited! It was fun to see the suprise on his face!

Thomas had a late night with Katie Struthers, Matthew Jones and Scott Larson. They had fun playing with their swords all night long--they were so hard to entertain! Ha Ha. I tried to make his cake look like a lightning bolt...wheres Jacqueline when you need her!

Emilys story-in her own words

When I was a baby I had to have a Bone Marrow Transplant because I was really sick. I couldn't go outside because I wouldn't wear my mask and I couldn't go to the store or church.
Now I had another Bone Marrow Transplant. I can go to stores because I wear my mask now. But, I still can't go to church or school; but I like it at home.
I take my pills all at once (about 12 at a time!)I get a sticker. I get a prize as soon as my chart is all filled. Every time I take a pill I get a sticker. I call my chart, "Sticker Chart".
I get to go to Cambrys house. She is my first friends house I get to go to but I still can't go to my other friends houses. But I like it at home cause sometimes I don't feel good to play with friends.
At night I think about medicine and it makes me scared, so I want to go and sleep in my Mom and Dads room. That's where I sleep and don't wake up.
I can brush my teeth but one silly thing I can't do is floss! How will I get the things between my teeth out?(her platelets aren't high enough so her gums will bleed)
I like it at home because I get to play with Leo. In the morning I wake up and I like it here.
I am a Super Hero aren't you? Every morning I get medicine through my tube(4 hours) and dance like a princess, read, color, snuggle and watch movies. Most of all my favorite thing is that I am home with my family.
I am a Super Hero just like my sister and my Dad. Jackie's a Super Hero because she saved my life.
Anyway,I lost my hair but I know it will grow back.
My Dad is strong and brave and stuff like me! Someday I will be just like my sister when I grow up. She is the best sister and my Daddy is the best too!
Author-Emily Heaps

I just had to share this tender story. I could barely keep up with her as she told me what to write! I love it when she opens up like this. It is actually a rare thing! She wants us to send it to the Friend so she can see her story in a magazine!

Day 34

Our neighbor Cindy Garrison sent over a lot of home school supplies last night. We felt like it was Christmas at our house! Cindy had no idea how much Emily would enjoy the things she sent. It is going to make school lots more fun and exciting! We talked about an artist who put paint on a flat surface then scraped designs etc. then you put a piece of paper on top and it transfers to the paper. We had to try this of course and she LOVED it! She sang about loving to paint all morning long.
Emily was so wiped out from playing yesterday that she kept telling me how much she likes being home. It is so opposite from her usual--"Where are am I going today?" She has definitely slowed down! I am sure it will take a long time to feel like her normal self again!
We were at a store today and a lady walked up and asked if she could give Emily money to buy something. She looked like she was going to cry and had such a pleading in her eyes; I couldn't help but wonder why. It was such a sweet thing to do. About 20 minutes later Emily had another lady come to her and tell her how special she is and to be brave because she can do it. She told her that her daughter who is 3 is also bald. When she left Emily said "Mom, everyone is so nice and they don't even know me!" I think this is what she needed today. It really made her feel good. I promised to take her to Toys R Us tomorrow after her clinic visit; she can't wait! She finally has money to get something!

Day 33

Emily asked the doctor if she could go to her friend Cambry's house. He told her yes....if, the house is clean and everyone is healthy. Emily was so excited because she just knew this would not be a problem for Cambry's mom! I felt bad asking so much. Not only does the house have to be clean but snacks have to come packaged or from a brand new box that no hands have been in. This can be very overwhelming for anyone! Of course Angie was more than willing to do this so...
Today, Emily's dream came true!!! When Cambry came to pick her up I felt like I was sending her off to school for the first time or something. I have been with her 24/7 for the last 2 months, it was hard to see her walking away.(hand in hand, it was very cute!) Everything went well, Emily made Angie call to see if she could have popcorn in her own bowl.(She wanted to be sure!) It is awesome that she is so careful, unlike when she was a baby running for the dirty rocks to put in her mouth.
When I came to pick her up she was completely exhausted! Hopefully this means she will sleep well tonight!
Today meant so much to Emily, and to me. I feel so blessed to have such a sweet friend who was willing to go to all that trouble to allow Emily to have a such a wonderful time! Emily was grinning from ear to ear!Thanks Angie!
-Jill

Day 32

Painting with water colors is so much fun! Mrs. Moore came today and talked about feelings. Emily got to color a picture of herself and then paint a water color picture that matches that feeling...She loved doing this! Even though she hasn't felt very good today, she made herself happy with lots of "happy" colors! It's amazing to me what art does for her spirits. Her mind starts to think of so many wonderful things to do. It's fun to see the creative juices flowing. She is able to forget about how she is feeling and take a break from it all. Jacqueline is great at this kind of stuff too. They definitely inherited it from their Dad!!!!
We went to BMT Clinic today and Emily is doing wonderful! Her counts are great. She is struggling with high blood pressure still which could be the cause of the stomach aches she has been having and just not feeling well. We are upping the dose of medicine in hopes that it will bring it down to an acceptable level. Overall we are so pleased with her progress. We feel very blessed!

Day 31

Today was full of fun with Cambry, Mia and Kaleb. They started out with blowing bubbles, which soon led to blowing them no wait, pouring them on Leo to give him a "bath". They searched the yard for perfect rocks to clean and then paint. All four of them insisted on helping make cookies for Sister Holladay. They were very proud of themselves!
I told Emily she would need to help me do some of my jobs since I now had to give Leo a real bath. She was not happy about it but as soon as she did her first job she came and asked me what I needed her to do next. She became happier and happier as she worked. It was a great learning experience for both of us. I realized how important it is to follow through with consequences and how good it makes her feel when I do. She felt so good about herself. It made the night so much more enjoyable for everyone!
We talked about animals and their habitats in school today; it was so fun to see her get so excited about learning! She told the family all about the things she learned at dinner tonight! We are going to go to the library and find books about animals and whatever else interests her...this is what makes learning so fun...focusing on what interests you!

Day 30

Emily was very happy today! She kept telling me "I am being so nice today mom!" I think it even surprises her when she feels so happy. It is nice to have these days to remind us of how our Emily really is!
Aunt Debbie came to play while the rest of us went to church. Thomas was sick so he stayed home and got a taste of how fun it is to wear a mask all day! He is hoping he gets to go to school tomorrow!
It was so sweet of Debbie to come over, not only did she read and play with Emily but she had dinner cooking and dessert in the oven! She is so thoughtful! She is always thinking of ways she can serve us and all the Heaps family! We feel so blessed to have such a great Sister and Aunt!
Emily asked Grandma and Grandpa Whiting to come and visit. She was so excited when they said yes. She was so happy to see them. They came in with masks on. Emily thought that was pretty crazy telling them to take them off because they weren't sick! They told her they wanted to be like her!
Sundays are always so nice to spend relaxing together as a family. This has been a good one!

Today was Sister Holladays last day of being Emily's primary teacher. What a sad day! As you know, she has been such a blessing in our lives...it is so hard to let her go. She is going to be the new primary chorister which she will be so great at. Now, all the kids can get Sister Holladay each week! It is hard to imagine our Sundays without her. Even though she won't be teaching Emily we are hoping she will still come to visit! Sister Holladay has been an angel sent to help our little Emily, to help her remember that she is a child of God. we are so grateful for all that she has done! We will never forget her unconditional love, fun lessons and songs!(especially the Chemo song!)Thanks Rose!!!! We will miss you dearly!

Emily decided to make marshmallow snowmen! Of course she made a Leo snowdog too!

Emily had lots of fun blowing bubbles today. Leo kept trying to eat them. It was very cute to watch!

Day 29

We're HOME!!! No more fevers.
Emily is sleeping in her own "comfy" bed tonight. I'm not sure who's more excited, her or me. It was a long two days of a little girl who was very vocal about wanting to go home!!!
On the way home she said, "I will be nice from now on, for the rest of the day so you can get me a prize." I had to fight back the laughter. I said "Sure when you get your chart filled up but it takes a lot more than one afternoon." She of course threw a fit saying "I will only be nice if you get me a prize!" I told her to "let me know how that works out for her." After about 10 more minutes of yelling she was quiet then I heard "Sorry Mom"...kids are SO smart!
We drove up to a husband cleaning out the very dirty garage and two kids who had cleaned the whole house so I wouldn't have to when I got home! I don't mean to brag but I really do have the greatest kids and hubby in the whole world!
I needed to pick up a prescription--Matt could tell I was pretty frazzled...lets just say for those Love and Logic fans, ENERGY DRAIN! He told me to take my time. So I did! It was a much needed break! I came home a much nicer mom.
It is amazing how much patience and understanding it takes to remember not to take the things she does personally. Isn't this one of the most important keys to parenting? I feel pretty selfish when I sit down and realize what a difficult time this is for Emily. She needs her mom to help her get through this, not make it worse with being mean back!(of course I would NEVER do this!Ha Ha)It is so easy to take out our frustrations on the ones we love the most; not that we should but I think a part of us knows we will be forgiven and still loved!It isn't easy to be at our best 24/7. There is so much to learn! How do our kids survive us?
When I came home Emily was so sweet. She hates being uprooted from home and bugged by all the nurses doing her vitals and giving her medicine. She told Matt that she was "so tired" tonight. It will be great to sleep in our own beds!Theres nothing like being home.

Day 28

I am writing from Primary Children's Hospital...yes,I said hospital! We came in this morning for a routine clinic visit and for IVIG.(Gamma Gobulin to help boost her immune system) She has had IVIG all of her life and never had a problem with it at all. Well, I guess after a transplant all that can change. Emily started to fever and it kept going up along with her heart rate and blood pressure! They decided to keep her over night just to watch but as the day wore on and she kept fevering hours after the IVIG they decided to start her on some antibiotics just in case she actually has an infection. This means we have to stay longer(unless the doctor decides to be really nice). The usual protocol is that with any fever you need to stay for 2-3 days while they culture the blood to find out what kind of infection you might have. When the results come back they can give us the right meds and let us finish them at home.
Emily has been crying ALL day and into the night. "I want Leo!" "I want to cuddle with Leo!" "I want my bed, it's not comfy here." "We aren't a family again!"
After hearing this about a hundred times (NO EXAGGERATION!) I said "Honey, stop. You have got to calm down." She just kept telling me "But I have to talk about it!" then she would start to cry all over again!
I have to laugh when I remember back to when she was a toddler. She would not ever want to leave the hospital. She would have surgery and it would be time to go home and I would have to pick her up and walk out with her kicking and screaming! No such luck now!
Well, let's all pray that she will have no more fevers and a restful night.(Ha Ha) Hopefully, if she has no more for the next 24 hours MAYBE we will get lucky and get to come home. I sure hope so for her sake! I feel so bad for her!

Day 27

Emily had private dance lessons today from Ashley Carlson. She was so excited! Ashley brought lots of fun music and showed Emily lots of fun dance moves. Ashley is so busy with her high school drill team and everything else. It was so sweet of her to take time for Emily. It made our day!

We got to have Dad home all day! His boss ordered him to take the rest of this week off. His boss had a few people come and tell him how tired Matt looked; so, he came to Matt and told him how impressed they have been with how he hasn't fallen behind with work during all this and has done so well, but that it is time to take a paid leave break for a few days and SLEEP! He deserves the break. I can't believe how hard he works and still comes home and has energy for all of us and his church duties. He always has such a positive outlook on life. I know this is what helps him through times like these. He always helps keep me in check when I am find myself slipping. I am so grateful for him. I honestly don't know how I would handle life without him...this is a trial I hope I never have to face!

We spent the day getting some much needed things done which was so helpful. Emily got sick of going in and out of stores but found that Dads shoulders made it a lot more fun! It's funny because just when I didn't think she cared about what strangers thought in stores...I was wrong. She has become more aware that people are looking. She got some great advice from her Uncle Jeremy who is in a wheelchair. Thanks Jer! It is always nice to hear from someone other than Mom say it's OK.

She has been more on edge the past few days and I am sure this is probably why she's been more sensitive to what people think. She's been getting upset really easily; and she's finding out that she doesn't get very far when she yells at me and tells me she won't do....unless I let her have her way. It is taking a while though! It is quite funny to watch actually. I just have to remind myself... DEEP BREATHS!!!

Day 26

Medicine anyone? Emily would love to share some, oh I mean ALL of hers! Chocolate milk is definitely the best drink to help it go down--I am sure it has "A spoon full of sugar" in it. Mary Poppins was right!

Emily reminded me every few minutes to look on Redbox to see if the new Barbie movie was available to rent. About 7:00 tonight it was in!!!! Dad made her day by going and getting it for her. (We love $1.00 rentals at our house!)

Jacqueline heard her calling her friend Cambry to come over to watch it with her. Too bad it's a school night. Maybe tomorrow after school!

We went to the library today and Emily saw a school friend named Alison. They were so excited to see each other. It is so wonderful how accepting kids are. They talked just like any friends would. It didn't matter that Emily looks different and had a mask on.

When we are out in public many kids ask questions but then accept it and move on...there is no hesitation or running away. They find out why and then it doesn't seem to be an issue. Emily asked me why so many people ask questions. I asked her if she were to see someone with a mask if she would wonder why they were wearing it. I told her this is her opportunity to show them how nice she is and that it is no big deal..."If it is no big deal to you, then it will be no big deal to them." She seemed to understand.

Even though we don't go many places and we go at times that aren't so busy, it is really nice for both Emily and I to get out of the house for a little bit. It's always nice to have a change of scenery.

Well, I've got to go and give Emily her last meds of the day. Love you all!!!

-Jill

Day 25

Mrs. Moore came over for school today. Emily was very nervous about this but I knew as soon as soon as Mrs. Moore got started all her fears would be washed away. They played games and sang the fun ABC/Nursery Rhymes song....Mrs. Moore makes the songs sound a lot better than I do!
Emily says "Everything" was her favorite thing that she did with Mrs. Moore. This is a great compliment since she tells everyone that school is boring when she does it with Mom. "But I have to do it." She says. Maybe if I stand on my head???
At the end of school time, Mrs. Moore gave Emily her book order YA HOO! She was so excited. When Cambry and Mia came over for "recess" they had a great time reading the books together.

Day 24

Emily woke up very happy today. We went to our clinic appointment and she sang songs about rainbows and colored for about 2 hours. It is so good to see her so happy. Everything is going great all except her picking!!!! Last night she came down the hall with blood everywhere! We thought her line must have gotten a hole or something. She had picked a tiny spot on her hand that took me 15 minutes of constant pressure to stop bleeding. The doctors gave me little 2X2 covaderm to put on her owies. Of course Emily couldn't stand them. I finally let her take them off tonight after they were all peeling off from her itching them. Hopefully she can find a way to keep herself from doing this.
I just feel bad because I do the same thing...(I just don't bleed to death). It is sooo easy to say "Just stop", but it's a very different story when you're the one trying to stop! Why did she have to inherit this trait?
Emily was given some money to spend any way she wanted and she has been very excited to do so. She spent this afternoon on the Internet getting an idea of what she wanted. It is so hard to decide! I took her to Target and she picked out a barbie from a movie she has been "dying to see". It was so fun for her. I am so impressed how she is able to walk into a store with her mask, and in this case, her IV medicine tubes hanging out of her backpack and not be bothered at all the looks. She just keeps going! I love how she just does her thing.
We went to Rick and Mary Whitaker's home for dinner and family night. For those of you who don't know the Whitaker's, I feel very sorry for you! Everyone needs a Rick and Mary in their lives! They are such amazing friends and neighbors who would give the shirt off their backs if they thought it would help you in any way. They have an amazing way of making everyone feel so loved and sincerely cared about!
We had a great dinner and Rick gave a beautiful lesson about trials. He is amazing when it comes to his knowledge of the scriptures! I always learn new things when I listen to him.
Emily was very excited to be able to go to a house other than her own. She is already looking forward to going back for a visit to color and read books with Mary! Thanks Rick and Mary for making tonight so special!

Day 23

(We can't find our cameras battery charger so we don't have pictures) Today we had regional conference and Grandma Whiting came over to play with Emily while the rest of us went. It is so nice to be able to go to church together. It will be so wonderful when Emily gets to come again!
When I got home Emily kept telling me how nice she had been to Grandma. I had told her earlier that kids who are nice have privileges given to them.(In this case, she was wanting a cookie.) Anyway, later tonight she said, "Mom, I was nice to Grandma and I forgot about the cookie!" She felt so good inside to be nice especially because she had done it because she wanted to. The cookie had nothing to do with it! It is amazing how good it feels to do the right thing for the right reasons!
Sister Holladay came today with her whole family to do primary. We had a great time talking about the 3 degrees of glory. We played some fun games and sang songs to remind us of the things we need to do to reach the Celestial kingdom. It was fun to have the Holladay family over and to see what a great family they are. If anyone ever wonders if a primary teacher can make a difference just look at one of the greatest examples you'll ever meet...Rose Holladay. She is a perfect example of someone who magnifies her calling. We feel so blessed to have her as Emily's teacher.
Tears came to my eyes as I watched Emily singing the primary songs. She loves the Chemo song-they always start it with "I hate chemo, it makes me sick, I lost my hair but I don't care because....I am a child of God...." This is what Emily needs to know without a doubt so she can stay strong!
Marlin K Jenson spoke today about having tolerance and sensitivity towards all people with differences...in other words ALL of us. It was touching to hear his experiences with his brother who was mentally handicapped. He talked about how much of an influence his brother had in shaping him into the person he is today. I couldn't help but think of all the things we are learning from Emily. I see a sensitivity in Jacqueline and Thomas that most kids their age don't. They understand things on a deeper level. This is a great reminder to me why we have trials...to give us greater understanding and strength as we move ahead in life. I am truly grateful for my trials. I used to think I must have not learned everything I needed to during the 1st transplant. I have realized this is not true. I am learning different things this time around and am amazed at how much strength I gained the first time around that I am now able to lean on. Once again, I am re-learning that God knows whats best for us!
Obviously, it isn't just me who is learning from this experience but our whole family. I am positive this is a time Emily will look back on and remember as a time of learning so much about herself; even though she is just 6 years old. The lessons she is learning now will help her carry out her mission on this earth...her very LONG mission!
I watch Jacqueline and Thomas and amazed by their faith and strength. It is hard when your family isn't together and your sister is taking up so much attention. They never complain, they have really stepped up and find ways to help out in any way they can. I can't tell you how much this means to me. The love these kids have for each other is so wonderful. I hope they always stay so close!-Yes, they still act like siblings but at least they make up fast!
Have a wonderful Sunday everyone.
-Jill

Day 22

Today is Saturday! That means Dad, Jacqueline and Thomas all get to be home with us. Ya Hoo!
We all went to Thomas' first flag football game. He is the quarterback. He made some great passes and runs. It was fun to watch him.
Emily did not want to go to the game; but it was a perfect no wind, just the right temperature day so we made her come along. It is so nice to be able to go and watch Thomas as a family! We just sat away from the crowds.
Emily was hesitant at first but soon some friends came up and she enjoyed the company. They decided to go over to the playground. We told her she could go with a mask on. Grandma took her over and was amazed at what she saw.
She said all the kids were looking and a few asked her what she was wearing in her ears.(This is so funny to me that they would first ask about her hearing aids and not about her mask or bald head!) Grandma said she answered them very confidently saying "They help me to hear." Emily then started asking kids what their names were. She found a boy who was in her kindergarten class. She asked him if he remembered her and he said "Yes, you were in Mrs. Claymore's class." They continued to talk for a little while. She had to tell him she couldn't play in the dirt with him, so they just talked.
I was very proud of her today. She was able to get past her fears of how people are going to react when they see her; in doing so, she allowed herself to have fun.
We had a great Saturday. We got lots of housework and yard work done which is so nice since we have been so crazy lately. Matt and I went to a Stake meeting and while we were gone Jacqueline painted her wall. We will post pictures of it soon. It looks awesome! She is so creative. It is so fun to watch her in action!
I also painted today, well I just did touch ups on our walls and doors. I was very pleased with my accomplishment until I realized it was the wrong color! I just spent an hour trying to fix my mistake! Oh well, You live and learn right!? I am just glad we still had the right color so it could be fixed!

-Jill

Day 21

Emily felt tons better today. Especially after waking mom up at 3:00am trying to snuggle her way into our bed!

She is enjoying school time which makes me so happy. I am surprised at how much I enjoy this time with her!

We talked her into going outside on a little bike ride. She had forgotten how much she enjoys riding her bike. It was a bummer when we had to come in because of the wind.

The medications are giving her anxiety in ways I have never seen before. She did not want to go outside because she was scared that people might laugh at her.

Emily feels very secure at home with her family and her close friends but when she thinks outside of this it is frightening for her. I know a lot of this is because of the medications. In fact, she even told me today,"Mom, I just get nervous to play with friends because the medicine I am on makes me feel like I don't want to play." It's good she can be open with her feelings and I am so glad she realizes it isn't her true self. I told her that some days she would feel like playing and other days she won't and that is just fine. I am realizing how important it is to keep her interacting with others so she doesn't have even more anxiety as the months go on.

It is hard because we are supposed to keep her from public as much as possible so she won't get sick but I hope when she stops taking all these meds she will be able to relax when she does go out. The unknown always seems scarier then reality. I am sure with time and patience she will be able to handle it great. For now, I am glad she enjoys being home because this is where she will be 90% of the time!

Day 20

Emily woke up with diarrhea all over. Yuck! I felt so bad for her. We were going to BMT clinic this morning anyway so I brought a lovely sample along for tests. I was very worried they would make her stay.
Emily's clinic appointment went well. Her ANC is still up which is great. Her blood pressure is high so she is going on some medicine to bring it back down. She had to have a tube suck stuff out of her nose which she hated so they could do some tests. She has had a very runny but clear nose for about a week now.
I am glad to say they let us come home and Emily's diarrhea is looking a lot better. Too much information? Yes, but this is her journal you know! I just know she will love reading and knowing other people read about her diarrhea!
I could definitely tell she was not feeling well. She kept telling me she didn't want to play today. She said "Mom, its just too hard to have friends over." I laughed because no one was even asking to play. This is very unlike my little social butterfly!
As she lay on the couch resting most of the afternoon, Leo would hop up and snuggle with her. She loved every minute of this of course! I looked over one time and he was licking her head! When I told him to stop Emily said,"Mom, I didn't know he was doing it."Ha Ha
In her prayer tonight she asked Heavenly Father to help her not to have such a rough day tomorrow. I will pray for this too!

Day 19

We spent today at HOME! Emily and I did school in her new "schoolroom". She had lots of fun counting 100 fish! She also wrote in her writing journal about her new pink room and her new blue schoolroom. (It was very cute)

We did venture out to Costco. (Yes, I had to be very brave) She was really good about wearing her mask the whole time and of course, We LOVE hand sanitizer!

I am still trying to figure out a good routine with cleaning, school, medications and all the other "normal" family things we do. Things like this are always overwhelming at first.I'm so glad I have done the cleaning and medication stuff before, especially having to add teaching school to the mix. I am sure I will figure it out soon.

The medications are taking a toll on Emily. She keeps seeing black spots on her arms and spends hours trying to get them off her skin. "They are there mom, I know, I am not kidding!" She will even pick at your face if you get too close.

It is hard for her emotionally because she just doesn't feel like herself. She has times in the day that are great and others when she doesn't want to talk, or just wants to lay down. There are also times when she talks too much!...April West called today and she answered; when I asked her to bring the phone to me she yelled, "Mom, you can come and get it yourself, I am not your servant!" Needless to say I was grateful April is so understanding. I told her I guess I have to stop pretending that my family is perfect...the truth is finally out!

We were warned about these side effects but it is hard to watch her struggle. I am grateful to know the personality change is only temporary! For now we will do our best to help her get through it all.

Today was a good one. Emily is so happy to be home!

Day 18-Going Home!!

What an amazing day! I came in from running and Emily was jumping up and down saying "I get to go home, I get to go home!..Let's go mom!" It was very hard for her to wait for all the boring discharge stuff and then we had to wait for the medicationto be ready. When we finally pulled up to the house there were neighbors waiting at our house with balloons and a welcome home sign to help celebrate with our family! It was so wonderful to see the light in her eyes. She could hardly contain herself. We brought Leo out and he went crazy! She was so excited that he still knew who she was without even having to sniff her!

While she was in the hospital Jacqueline painted and decorated her room to surprise her. It was so darling to see her face when she walked in. She loves her new room!

Emily was on such a high! She got to play with friends and of course with Leo. By the time 5:00 hit she was so exhausted. Her friend didn't understand why she was laying down wanting to watch a show. I explained that Emily is on a lot of medications and gets tired really easily.

The laurels in our ward showed up at our door dressed as princesses(they were so cute!) they brought Cambry, Mia and Hallie along and they had a little party making crowns and painting nails! Emily was tired but everyone was very understanding and patient!

As I was learning how to give Emily her IV meds at 11:00pm with the home health nurse. Aunt Monica showed up! Yahoo! At first she didn't come to our house because she thought we were asleep. Emily started to cry when she thought she wasn't going to get to see her aunt. Grandpa saved the day and brought her over. They had a great time giggling and laughing.

I finally layed down at 1:45am. It was a long but absolutely wonderful day! It is so great to be able to go and hug all of my children and tell them goodnight. It is an amazing feeling to be together under one roof again!

We still have a long road ahead of us but at least we can do it from home and just go up 2 times a week to the hospital. We will celebrate the good days and pray that the hard days will be far and few between!

Day 17-Emilys post!

Emily had some wonderful visits today from her teacher Mrs. Moore, President and Sister Christensen(Matts mission president), and Halle and Sadie(and their mom and dad of course)! Thanks for coming!
Emily wanted to write todays post so here it goes.....
I get to go home tomorrow...maybe. I think it's cool. I can't wait to see Leo. I am so excited to see Leo. I can't wait to see Leo, I really missed Leo and I can't wait to play with him.
I can't wait to see if my pumpkin is starting to grow(in her garden).
Tomorrow I get to play with Leo a lot. He is going to be pretty excited to see me. I can't wait to see the flowers and I can't wait to have so much fun with my friends and cousins. I get to play with my family again.
If I don't feel good we will come back up to the hospital but when I feel better I get to go home again. I hope I don't get any fevers cause I don't want to go back. I will miss Leo a lot. I like Leo, he is the best ever! I like to play with Leo a lot and I can't wait to have fun with Leo and start playing with my friends again; but I can't go to their houses but they can come to my house.
I really can't wait will it's tomorrow! I still won't be able to go to church but I can still have primary with my teacher. She can come over after church.
I really can't wait! My friends might be excited too for me to come home--me too! I'm excited to come home. We will have so much fun, I will have a blast! I won't even want to come to the hospital again cause I really, really want to just stay home! It's fun to be home and spend time together with family and friends again cause it's so much fun to be back, cause I can't wait to go home!
-Emily
Do you think she wants to go home? Ha ha!