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!