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!

Grateful Hearts!

When Matt and I realized Emily would need another transplant we worried. Not just for Emily but we knew that it meant relying on so many people just to get through it all. We have always felt so grateful for all the support we received the first time around.
One of the nurses was telling me how surprised they all were that we still have so much support! She said that usually the people start to get burned out and you see less and less support. If this was the case we would totally understand. You have all done so much for us already!
This has definitely NOT been the case! Emily has so many visitors (which she loves so much!) Jac and Thomas have been taken care of after school and with rides to and from places, the kids now know what it is like to eat really good food(they aren't excited for me to start cooking again!). Our lawn has been cut, Our house has been given a complete spring cleaning.
For those of you who came over to clean, you know how frazzled I was. I couldn't even think straight. Angie took over and everyone jumped right in. I was so grateful for the help! We had about 10 women over and it still too over 3 hours. This would have taken me FOREVER!!!!
Another huge burden on our shoulders is of course the cost of this whole thing. We have been so amazed at the wonderful people who have been so willing to help us with fundraisers! Crystal Hegamen put on such a fantastic "Swim for Emily" on Friday. I started to cry when I saw all of the people who were so willing to help and come and support our family. So many people that didn't even know us yet wanted to help. My heart was so full of love for our community! Jac and Thomas felt so loved too which was so good for them! This night raised enough money to meet Emily's deductible this year and next year for hospital stays and doctor visits!
We would love to say we don't need anymore financial help but in reality the costs of Emily's medications once she is home is what kills us! We have no cap on this and she will be receiving meds for at least 9 months to a year if everything goes perfectly.
Our good friend Tamara Bell came to us back in July and told us she wanted to do a benefit concert in October for us with her friend. She has been working so hard on this; it is going to be an amazing concert!
The Richards family in our ward has just found out that Randy still has cancer. He has been fighting since last November and is looking at a possible bone marrow transplant on top of more Chemo and Radiation. We have decided this benefit concert is going to be for Emily and Randy!
We know how much everyone wants to help both of our family's and show us support in any way that you can so why not combine the two! We aren't giving Randy a choice on the matter because we know how good it feels to have so much love poured out to you on your behalf. It is healing. It gives you strength to keep moving ahead even when you don't think it is possible! The help you receive goes so much further than money to help pay the bills.
Situations like these can be so exhausting and draining. I have definitely felt this way(as many people know!). I just want to shout THANK YOU to all of you for everything you have done and continue to do in our behalf!

When anyone asks how our family is handling all of this I can honestly say we are doing great! We had so much support the first time and nothing has changed the second time around! Emily even has 8 year old girls who are willing to play webkinz with her online from their homes. I don't think most 8 year olds would love to play with a 6 year old. They are so sweet to her!
It seems so small, THANK YOU, but it is said from the bottom of our hearts. We are also determined to give back in any way possible when we can. I have realized the truth in the saying "What goes around, comes around" The movie "Pay it Forward" showed this in action. We will definitely keep it going forward!
We feel Gods love through all of you. You have allowed Him to use you as instruments in showering tender mercies upon our family. We feel so blessed!

THANK YOU!!!
-Jill