Merry Christmas...

Well, it's the day after but I wanted to take a moment to say how thankful I am for our many blessings. I'm so grateful that Aaron has a good job and works hard so that we can have stability during these difficult economic times. Our family is in good health and we have the most wonderful family and friends. We spent Christmas eve with friends and Christmas day we just relaxed at home. My parents came over to watch the boys open a couple of gift they had brought for them and then we went to see Lucas to wish him a Merry Christmas. We then went over to Aaron's parents to take them a gift. I made photo albums of the kids for both of our parents this year and they turned out really cute. It's really sad that most of the pictures we have of Lucas is when he was sick and he had a feeding tube taped to the side of his nose. It's not that we didn't take any pictures of him as an infant, but most babies don't start smiling and laughing until they are about 4-5 months old and these make the best pictures. I've learned my lesson though. Never put off pictures and video because you just never know. I was even waiting to get our family pictures done until Lucas could sit up. Well, he got sick and I was having some major regrets. Then, our sweet friends arranged to have our pictures done in between his surgery and his first round of chemo. It was such a blessing and I'm so grateful to Melissa for taking pictures of our family with such short notice. There are so many good people in the world and so many acts of kindness have been extended to our family. This Christmas was very emotional as every time I heard a song about the baby Jesus or saw a picture it would remind me of Lucas. Yesterday I was telling the boys that Lucas is so lucky because he gets to be with Jesus on His birthday. Then Kaden asked me if he would be eating birthday cake. "I sure hope so. Heaven just wouldn't be heaven without cake." Aaron then replied that they probably have better stuff than cake in heaven. Well, I hope that everyone had a wonderful Christmas. We love all of you and thank you again for your love and support.

Shannon

We're finally ready...

We just finished our Christmas shopping yesterday and now we are ready to relax through the holiday. Aaron is off work until after Christmas and it has been nice having him home. Wednesday night was Kaden's school program and it was so cute and entertaining. Unfortunately Kaden was on the floor and we couldn't see him the entire program. Oh well, I guess the important thing is that he knew we were there to support him. Friday night we went out with our friends Jeff and Leigh. We went to dinner and saw the movie "Avatar" which was sooooooo good!! Yesterday we went and put some decorations up on Lucas' stone and it looks so cute. The boys each picked a Christmas song and we all sang to him. It was sweet. I'm so glad that we now have something to look at when we go visit his burial site. I had an emotional day today because I was going through all of our pictures on the computer and even some video. It was flashback after flashback and even though I know there is a reason for all of this, I found myself asking the question,"Why him? Why us? It's just not fair!!!" Then I had to remind myself of all that has transpired from this. How many lives he has touched because he was willing to come down to earth and suffer so that others could learn. I truly believe this was a decision he made in the preexistence and he signed up to go through this in order to help others. I am so proud to be his mother and I'm grateful for the things our family has learned. This is my favorite time of year and we are so blessed to have a Savior who was willing to come to earth to suffer and die for us all for a greater purpose. So that we could return and live with Him again someday. May you all have a very Merry Christmas and a Happy New Year. We might go sledding tomorrow with the boys since we received a bunch of snow today. I love snow for the Holidays!!!

Cabin Fever...

Jonas has been a little under the weather for the past few days and so we've been cooped up inside trying to get him better. I've been making the best of it doing a lot of Christmas baking which those of you who know me are aware that I get a little crazy this time of year. What can I say, I love to bake! And there are certain things I only make during the holidays. One of the purposes of this blog is to record the funny things the kids say. Aaron has been telling me for years that I need to write these things down because it's crazy how fast you forget them. We know that the boys make us laugh all the time but then a few days later we try to think of what is was they said and whoops...we forget. So, I must share this. Carrie Brown who is in the Primary presidency at church said that Jonas got up to say the opening prayer and during his prayer he said multiple times," Jesus, thank you for Old McDonald's. I'm grateful for Old McDonald's with playgrounds and I'm grateful for Old McDonald's without playgrounds." How funny is that. We have 2 McDonald's near us and only one of them has a play land. It's so cute to me how sincere children are when they pray. They really are grateful for every little thing. It's no wonder we are supposed to be like them and our boys remind us every day that we need thank Heavenly Father for the little things in life as well as the big things. I love listening to them pray. Well, Aaron only has to work through Wednesday and then he's off until after Christmas. I'm so grateful that he has a job that allows him to spend so much time with us for Christmas. We are going to attempt to get all of our shopping done next week. Now that the basement is done I'm not sure where we are going to hide the boys gifts since this was our hiding place in the past. I might just have to wrap them as we get them. That might be a good idea anyway so that we aren't up until 2:00am Christmas Eve wrapping presents. It will be a hard Christmas without Lucas. He was only 2 weeks old last Christmas and as I was reflecting with Aaron the other night, I was saying how crazy and unpredictable this past year has been. Last Christmas we were holding our infant son having no idea the trials our whole family would be facing in the near future. We were just so lucky and blessed to have a beautiful healthy baby boy. Life can change in an instant. Cherish every moment because you just never know what storm might be coming your way. The storm has calmed down for us and there are still days when it rains. But, occasionally we are blessed to see a rainbow.

Happy Birthday Lucas!!!

Today is Lucas' birthday and we are happy to celebrate it. This day reminds us of the day that he came into our lives and began his short stay with us here on earth. We feel so blessed to have had him for the time that we did. Above are a couple of pictures of his recently completed headstone. Thanks to those who so thoughtfully left flowers and cards and for other kind gestures in memory of Lucas and this special day.

Happy Birthday Lucas!!! We love you!

Aaron

What a great weekend

Friday night we had the opportunity to attend the festival of trees and see the tree that was donated in honor of Lucas and Sadie Huish. It was really neat. We went with the Huish family to eat dinner before hand and had fun chatting with them. When we got to the expo center it was crazy mad crowded! We lucked out and were able to snag a parking spot in the parking lot. There was a shuttle caring people over from a different parking lot because of the traffic and crowds. Inside was full of Christmas Bliss!! The whole building smelled of cinnamon baked goods and lit up from lights all over. Music was playing and everyone was happy to be there. There were so many beautiful trees in honor of many other people, but of course we had our eyes on a very special one. It was so awesome. It was decorated in Curious George everything and Audra met us there with gifts for the kids. They each got to take home their own Curious George toy and blanket. The boys have slept with them every night. As we looked down to see the pictures on display along with their stories, they had 2 different baskets made. One of things that Sadie loved, and one for Lucas. It had Baby Einstein stuff and then I couldn't believe it but they had found the same bear that was his pall on Amazon. (I guess they are hard to find.) That blew me away. I can't thank them enough for all of the detail and time that was put into this tree. It was truly a beautiful event. Last night was our ward Christmas party and it was really neat. We were invited to come dressed like those during the time of Christ's birth and the whole cultural hall was decorated like Bethlehem. There were tent booths with food and activities for the kids and then the best part was the musical program at the end. It was a great way to enter the holiday season. Well, Tuesday is Lucas' Birthday and I know it will be a difficult day. But, Aaron and I are trying not to be sad whenever we see a picture of him or when something reminds us of him. We try to think about happy times and celebrate his life rather than dwell on his death. It's sad sometimes and I would be lying if I said that I kept it together all of the time. But really, I'm happy because Lucas is happy and what mother doesn't want that for her child? He was in so much pain when he was here physically and so I am happy he is no longer in pain. I miss him but I find that it helps to talk to him out loud as if he were right there in hopes that sometimes he can hear me. Sure it would be great if it were a two sided conversation but I know that day will come down the road. I am so grateful for my blessings and for Aaron, Kaden, and Jonas. They make me laugh everyday and I love them so much.

Shannon

'Bout time I wrote something, I'm a slacker...

Life has been busy. Shannon has done a good job in the last post to summarize the last month or so. I just figured I would write something because I have largely slacked on doing my part to update the blog.

What a crazy time this has been. Life marches forward and we go along with it, but our hearts will always linger with the memories of Lucas. People ask how we are doing, and I usually respond, "We are doing well," and that is true, we are well. We have so much to be grateful for. Yeah, we have our moments where we completely lose ourselves in tears and some of those cry sessions can be intense and drawn out, but we always find comfort in the Spirit and the truths we have been taught and still believe.

Not too long ago I told myself that when I see a picture of Lucas I would choose to smile, rather than be sad. That doesn't always work, but for the most part I can smile because I know that Lucas must be so much happier now, and he doesn't have to experience so much pain and discomfort. I also feel that there are times when he is close to us and he is aware of how much we miss and love him. I am so grateful to a loving Father in Heaven who allows us to experience tragedy but gives us promises and the opportunity to exercise faith in those promises and receive peace and comfort through his Spirit. I have so many questions left unanswered, and I probably will for a long time, but I trust that Our Father in Heaven is in control, is aware of every detail of our lives, and loves us infinitely more than we comprehend. I know that he has the answers to my questions and in time they will be answered. For now, I trust that Lucas knows we love him and he loves us, and one day we will be reunited with him. What a glorious experience that will be.

I know we have said it before, but I want to say it again. Thank you, to all those who have blessed our lives in large and small ways. You mean so much to us and may you be blessed in your lives and your families for your goodness.

One more thing in closing. My heart goes out to all of those individuals and families who continue to struggle with illness, tragedy, and difficulty, may God bless you to get through your trials. A special prayer for those whose lives have been touched by Cancer, may God bless and comfort you. We love you guys!

Aaron

So much to be Thankful for...

My how time flies. I can't believe how long it has been since my last post. I have no excuses and I need to do a better job of updating since I am horrible at writing in a journal. It was so easy when Lucas was sick because there were so many of you wanting information and it seemed to change from day to day. So we felt a need to share that information as frequently as possible. But we do have 2 other children that's lives need to be documented as well. And although our daily routine may seem boring at times, it's our life and I need to do a better job of documenting all of the little and silly things that happen. Halloween was a blast. We went to Aaron's parents neighborhood and Donna, (my mother in law) painted the boys faces. Kaden was a dead pirate and Jonas was a zombie football player. I think the days of cute Halloween costumes are over. They wanted to be scary this year. Aaron will post some pictures soon. Aaron went to Florida for two weeks to get a few certifications for his job. It's sooooo good to have him home. We all missed him terribly. It was a long two weeks for both of us but him having those certifications will hopefully benefit his career in the future. He's a computer programmer for those of you who are curious. I'm so grateful for him and all of the hard work he does to provide a comfortable life for our family. He's so dedicated and gives 100% and I know that it isn't always easy. His employers have been so gracious and supportive to our family through these past recent months and I am so thankful for their kindness and understanding. Our basement was recently finished and the boys now have a play room and Aaron finally has his office. A huge thanks to all of you who gave of your donations, time, and talents in helping us to lessen the expense. We appreciate it from the bottom of our hearts!! We spent Thanksgiving with Aaron's family this year. (We do the every other year thing as that seems to work out best.) It was nice to visit with his sister Marnie, niece Erin, brother Cameron, and his parents Bill and Donna. I feel so lucky to have married into such an awesome family. I couldn't have asked for better in law's. They truly treat me as one of their own. We had a delicious Thanksgiving dinner and watched the movie "UP" which was so cute. We hadn't seen it before. The weather was beautiful and not too cold. I must say though, once Thanksgiving is over I am always anxious for snow. I love snow during the weeks prior to Christmas. We now have a huge grass field in front of our house that would be perfect for snowman building, snowball fights, etc. It hasn't snowed enough to take the boys sledding and they are just chomping at the bit to go. I couldn't go last year because Lucas was just a newborn. We found out 2 days ago that Lucas' stone should be in very soon. I asked them if it would be possible to get it in by his birthday on December 8th and they are going to do everything they can to make that possible. It would be great to have something to look at when we go visit him. Last night we stopped by to say hello and tell him things that we are thankful for. It was cute to hear the boys talking to their baby brother. We all miss him so much. I know he doesn't want to see us sad and crying, but I can't help it. It's healing for me to cry and be sad sometimes. It's almost like I hold it in for a week at a time and let life get busy. And then something will remind me of him and I'll just let it all out. I always feel better afterwards. I had the opportunity to teach a lesson in church 2 weeks ago and felt prompted to share our experience with going through our recent trial. It felt good to let everyone know how we are getting through it and that despite all of the heartache, a lot of good has transpired. We need to find the positive things and hold onto them or our trials will destroy us. I am so grateful to have a knowledge of the plan of salvation and that our family is going to be together forever. I know that Heavenly Father lives and loves us and that it's through adversity that we can become the sons and daughters that He desires for us to be. For how else are we suppose to grow and learn if life is always comfortable? It's so easy to let our wheels spin and not to progress. He gives us these hardships in life because He loves us. And I'm sure it's heartbreaking for Him to watch us suffer through difficult times. I know that it was difficult for us as parents to watch Lucas suffer so I can only imagine how He must feel seeing many of His children suffer simultaneously. Well, it's getting late so I should probably go to bed soon. Thank you all so much for caring about our family. It is truly humbling how many of you have shown your love through letters, care packages, acts of service, hugs, smiles, prayers, the list could go on forever. Oh and before I forget, there will be a tree at the "Festival of Tree's" in honor of Lucas and Sadie Huish. For those of you in our area who are planning on attending look for the tree decorated in Curious George. Thanks to the Armstrong's for their time in planning this donation. It will be held at the South Towne Expo from December 2nd-5th. We are so excited to see it all done and want to thank all of those involved. What a great event and what a wonderful cause. (It is a benefit for the children at Primary Children's Medical Center which is where Lucas and Sadie were treated.) I hope everyone had a wonderful Thanksgiving!!!

Shannon

It's Sunday night and I'm getting ready to go to bed and thought I'd post a quick update. Lucas' head stone should be done in the next couple of weeks. Hopefully it will get in the ground before the first freeze otherwise it will have to wait until spring when the ground thaws. We took the boys to a movie yesterday with our friends Kelly and Roger and their 3 boys. It was good to see them but the movie was not one I would recommend. "Where the Wild Things Are" is not one we will be buying. The kids didn't like it either so people....don't waste your money. After the movie we went to Cafe Rio for dinner and I got my favorite pork barbacoa salad. I was kind of sad because the last time I had eaten this salad was at home during the last few days of Lucas' life. We were laying on the bed with him. These are moments that will hit me everyday I'm sure. Like the other day I was cleaning out the utensil drawer and came across a couple of Lucas' Binky's that I had boiled and put away in the back of the drawer. He loved those Binky's. Well, on a happier note....our basement is coming along and nearing the end of completion. My dad and brother were able to come over this weekend and do the wood work and our good friend Jared Hill will be starting the painting soon and is hoping to be done within a week. I'm so excited for the boys to have a play room downstairs. It will be so nice to have the extra room since we live in a town home and space is hard to come by. I want to thank everyone who have so graciously helped in getting this project done. I only wish Lucas was able to enjoy the finished product someday. Well, I'm off to bed now. Hopefully I can get some good sleep. I've been up a lot this past week with a really bad cough that doesn't seem to want to go away. I went to the instacare yesterday and the doctor said it's just a viral infection that has to run it's course. Hopefully it will clear in the next couple of days. Sweet dreams...

Shannon

It's been a while

I was going to post an update on Monday which was 1 month since Lucas' funeral, but the blog website had us blocked from doing so because of possible spam? I don't know, it's cleared up now. Anyway, life has been full of ups and downs. We took the boys to my grandparents house in St. George for a little get away this past weekend and it was a lot of fun. We just relaxed, watched General Conference, and played in between. We took the boys to a movie and ate at Pirate Island. We spent some time with Aaron's brothers family who now live down there and it was fun to see the boys interact with their girl cousins. It was good for us to spend some quality time together as a family. I had a few sad moments though that took me by surprise. The last time we went down to St. George was at the end of May. It was at my grandparents house that Lucas started exhibiting symptoms of the tumor. He was in so much pain and we couldn't figure out why. I remember he used to hate tummy time, but my grandma had a butterfly quilt that she had made and placed it on the kitchen rug and he laid there on that blanket for an hour at a time on his stomach with his head facing to the left. He wouldn't turn to the other side and now we know why. It was because the tumor wasn't hurting him in that position. I walked into the kitchen and looked at the rug and the memory came back to me instantly. I became very sad.

On a good note, I had the opportunity to go to Primary's last Thursday with my grandmother. She has been busy making quilts for the hospital and asked me to go with her. I was nervous because I hadn't been back since we took our son home to spend time with him before he would ultimately pass away. It was hard but it was a great experience. There was a man in the lobby that came up to my grandma while she was filling out something at the front desk. He said that he felt a prompting to say how much he appreciated her service. He had a 12 year old son upstairs with cerebral palsy. He's endured so much in his life and when he was a baby, he received a donated blanket which he has loved to this day. He got choked up and continued to tell us how this blanket is worn and tattered but never fails to bring him comfort. He can't talk but loves to listen to songs about the Savior and hold his blanket close. He thanked her and she felt good inside. I'm so proud to have her as my grandmother. She is such an example to me and I love her so very much.

On Sunday night we decided to go on a walk. It was chilly and we were wearing our coats and hats. As we were walking Aaron made a comment wondering if Lucas was with us on our walk. Kaden said in his matter of fact voice, "Yea, he's probably just floating around us." It made us all laugh. I know that he is probably so busy in the spirit world, but I know that he is permitted to come and visit us from time to time. I've been reading a book called "Life Everlasting" and it has brought me so much comfort. I still have a long way to go but it's been really interesting to read about other's experiences throughout the decades who have passed through the veil only to be told it wasn't their time. I've had so many questions and this book along with the scriptures have brought much needed answers. There are other books that have been recommended and I plan on reading those next. The whole thing just fascinates me and I feel so much peace and comfort knowing that we will be with our son again. What a reunion that will be!!! I'm grateful for my husband who has been so caring and supportive throughout this whole ordeal. I've heard that many marriages don't survive after the loss of a child and I can only say that we are doing great and taking time to grieve individually and also together. Even Kaden and Jonas have had their moments of missing their brother and they cry. It's healthy to show emotion and to talk about it together. Thank you all for your continued love and support.

Shannon

Life without Lucas...

Well, it's been almost 2 weeks since my last post. I feel like such a slacker but it's just been a hard couple of weeks. That phrase "Time heals" isn't all it's cracked up to be. If anything it's even harder now than it was a couple of weeks ago. I'm not sure why. Maybe it's because it's really sunk in that he's gone and that this is our life now. I'll be fine one moment and then something will trigger something in me to the point where the tears can't be controlled. Even the smallest thing can make me so sad. We decided to take the boys to Lagoon on Saturday since we had promised them all summer we would go and for some reason never got around to it. They had a blast and Kaden was finally old enough this year to go on all of the big rollercoasters. (Even the one's I'm to chicken to go on.) He loved it. Jonas being our more timid and cautious child was perfectly content riding on the kiddie rides. I did my best to put on a happy face, but inside I was struggling. All around us were babies Lucas' age. I would see them on the merry go round sitting on thier mom's laps laughing as the animals went up and down. I would see them sharing a shaved ice with a sibling, thier mouths covered in red and blue stickiness. I would see them sitting in thier strollers sleeping through all of the noise. Even in the bathroom getting thier diapers changed. I was jealous of these moms who had no idea how lucky they were and I was sad that Lucas couldn't be there with us. Then I had to remind myself that we still have 2 wonderful boys and I should stop feeling sorry for myself. I am grateful for them in my life. Kaden's doing well in school and seems to be adjusting just fine. Jonas has been playing with friends a lot and loves it. I love it to because I seem to get more done when he has a friend to play with. We ordered Lucas' headstone and it should be here sometime the end of October. Hopefully it comes before the first freeze or we will have to wait until spring. We decided on a simple and small headstone for Lucas. It will have his picture on it and an etching of his bear. Aaron's uncle Doug is designing something special to engrave on the back. I can't wait to see it!!! We've been trying to stay busy and productive to help keep our minds off of things, but sometimes we like to take time to reflect and talk about Lucas and cry. We were late to church on Sunday because I had a break down and just sobbed. This is our life now and we are doing the best we can just taking it one day at a time. We have recieved many cards in the mail from freinds, family, and complete strangers over the past couple of weeks and I want to thank everyone for your continued support. It has truly helped knowing how many people love our family. Thank you for being there for us though this difficult time. We love you all so much!!!

Shannon

One Week Today

It was exactly 1 week ago that Lucas earned his wings. This past week has been one of sadness, but we are finding strength that can only be explained by our loving Heavenly Father's hand. Yesterday Kaden was outside riding a neighbors skateboard and trying some new tricks. Then as we were getting ready for bed he said, "Mom, I thought Lucas was inside. Then I remembered he's in heaven and could see me doing all of my cool tricks!" I had to laugh. Laughter is just as theraputic and healing as crying. I find myself breaking down and tearing up over the dumbest things. Like the other day when I decided to transfer all of my stuff from the diaper bag back to a purse. I was cleaning out the pockets of the diaper bag and came across the tube of ora-gel that I had bought him back when all of this started and the doctor told me he was just teething. I kept his bear and slept with it a few nights ago. It still smells like him and I cried as I held it to my face. I am going to miss that little guy so much. We've gone as a family to visit his grave sight a couple of times this week and it's been nice. We took turns telling Lucas what we loved about him and what we are going to miss. It was a great activity for the boys to connect with him as they were distracted running around the cemetary. We are in the process of deciding what to put on his head stone. We have to decide soon because it will take 6 weeks to get made and it has to be put in before the ground freezes. We decided to purchase our plots and had Lucas burried between us. The head stone will have all three of us on it. (With the exception of our death dates of course.) I know that life will never be the same. I feel an emptiness in my heart that can never be filled. I love my son so very much. I know that we will be together again someday but in the mean time, it will not be easy as I am not a patient person. I guess that's a quality I will need to work on. I want to thank all of you for your support and please continue to pray for us as your prayers have strengthened us. We love you all!!!

Shannon

Rest in Peace Lucas

Last night was Lucas' viewing and although there was some confusion on map quest, there was a great turnout. Lucas looked like an angel and I want to thank our friend and funeral director Brian for doing such a great job. It was so great to see so many friends both old and new. This morning was the funeral and Aaron and I decided to speak. It couldn't have gone better. I definitely felt Lucas there. I hope we made him proud as he has made us both so proud. When we left this morning to go to the church house it was slightly raining and I remember thinking, "Oh no, not today. It can't rain today!!" Well, after the funeral service we were riding in a limo with Lucas' casket and I decided to check my cell phone. My good friend Whitney had sent me a picture of a beautiful rainbow she saw while driving to the funeral. This was only 20 min. before the service started. I'd like to think that Lucas was sending a little sign that he was smiling down on us. During the viewing this morning I felt so much comfort and kept my composure that is until the closing of the casket. Knowing that it would be the last time I would kiss his forehead and see his sweet face was so difficult. But, I know that I will be with my son again someday and that brings me much comfort. Aaron's Uncle Curtis did a wonderful job on a digital slide show of Lucas that played outside in the hall of the church. I couldn't watch it until tonight because we were visiting with family and friends. It was probably a good thing because I watched it tonight and cried through the whole thing. However, there were some laughs as well especially when a picture would pop up of Lucas making a funny face. What a character!! There were two musical numbers one of which my mother wrote the music and lyrics to. It was so incredible and I could feel Lucas' presence. After the services we went to the cemetery and the flowers were so beautiful. After the dedication of the grave there was a balloon release in which all of the children participated. Then we went back to the church for a family luncheon. I think today went really well and I'm so grateful for all of those who came to support us. We love you all so much!!! So many people were telling us how strong we were. Um....we were only strong because of all of the prayers being offered on our behalf. That and the comforter was embracing us and holding us up. I ask that you continue to pray for us as I know that once the dust has settled and things start to quite down, that's when it's going to be the hardest. At least, that's what I've heard. It's after the first couple of weeks that it becomes very difficult. I'm going to miss Lucas so much. Personally, I'm going to allow myself to have bad days when I just want to stay inside and cry. I think crying is so therapeutic and I always feel better afterwards. There is no weakness in tears, only healing. I also think it would be good for me to stay busy. I plan on volunteering in Kaden's first grade class and being more involved with his education. My house has been so neglected this summer mostly because I just didn't care. I had to many other things to worry about and so I look forward to cleaning and organizing once again. I miss my friends and having play dates and girls nights. I was at the hospital most of the summer and when I was home, I didn't dare take Lucas outside of the house for fear of him getting an infection. His battle was only 3 months and yet it seemed like a lot longer. I must say, I am not looking forward to going through his things. I plan on putting his swing, crib, stroller, high chair, etc. in storage this week. It's just to hard to walk by it all everyday now that there is no need for them. I hope to use it all again someday, just not anytime soon. We would love to have more children but we need some time to mourn. I don't know if we posted this earlier but on the day that we were discharged from the hospital we received the news that the genetic testing was back. It showed that the genetic mutation was found only in his tumor and not in his blood or DNA. This means that Lucas did not inherit ATRT from either of us. It was a spontaneous tumor. We don't have to worry about Kaden or Jonas or any future kids having it. This was some good news amidst the bad news. Anyway, we will continue to update the blog as this has been a great way to keep a journal and I have never been one to write in a journal. I'm realizing how important it is to keep a history of events because being human, we have a tendency to forget things. Thank you all for your sweet gestures, cards, donations, support, and love.

Shannon

Directions

It was brought to our attention that Google Maps gives incorrect directions to the address of Lucas' services. We are sorry if we missed anyone because of this. Below are some details that will help any wanting to find the location tomorrow.

Directions: These are the simplest with the most identifiable landmarks. These are if you are coming south from Salt Lake City.

1. Head south on I-15 S
2.Take exit 289 to merge onto W Bangerter Hwy/SR-154 go 3.1 mi
3. Turn left at S 1700 W/S Redwood Rd/SR-68 (Camp Williams Road)
4. Continue to follow S Redwood Rd/SR-68 go 8.1 mi
5. You come to the light with Chevron on the northwest corner and Smith's on the southeast corner.
6. Turn right at @ 8570 N/Cedar Fort Rd/ SR-73
7. Continue to follow Cedar Fort Rd/SR-73 go 3.1 mi
8. You come to the light with the Maverick on the southwest corner.
9 Turn left at Ranches Pkwy go 1.3 mi
10. You will come to a 4-way stop.
11. Turn left at @ W 7200 N/Pony Express Pkwy, Destination will on the right go 1.1 mi.
(Location is approximately 4506 E 7200 N in the Ranches area)

If using GPS use Latitude (Y):40.362009 Longitude (X):-111.956515

Note: there are many chapels in the area and most look identical. You will pass one chapel at Smith Ranch Road and Pony Express Pkwy this in not the Stake Center. To be sure check the mileage at the last turn onto Pony Express Pkwy.

In Loving Memory

Lucas Tyler Nelson was born December 8, 2008 in American Fork, UT, to Aaron and Shannon Nelson. His three month battle with cancer came to an end the night of September 2, 2009. Lucas passed away at home in the loving arms of his parents. Throughout his journey, Lucas was a Brave Little Soul who unlocked the love and compassion in people's hearts. Because of him, friends and family bonds have been strengthened, faith has been renewed, many prayers have been offered, and lives have been changed forever. He is survived by his parents, Aaron and Shannon; brothers, Kaden and Jonas; grandparents, Bill and Donna Nelson, and Gordon and Barbara Anderson; and many other aunts, uncles, cousins and great-grandparents. We thank the doctors and nurses who cared for Lucas, particularly the staff at Primary Children’s Medical Center. We also express our love and gratitude to family and friends who have given service and shown so much love and support.

Funeral services will be held Saturday, September 5th, 10:30am at the Silver Lake Stake Center, 4506 E Pony Express Pkwy, Eagle Mountain, UT, 84005. A viewing will be held, at the same location, Friday September 4th from 6-9pm and Saturday, September 5th from 9-10am. Interment will be at the American Fork Cemetary.

We will miss you our sweet Angel...

Lucas passed away last night (September 2) at 10:55pm with Aaron and I laying beside him. He touched our lives and hearts and will be deeply missed. Thank you to all who have been a part of our lives through this difficult time. It is a bittersweet feeling as we are sad to see him go and yet relieved he is no longer in pain. We know that he is with our loving Heavenly Father and Savior Jesus Christ and that they will take good care of him. We look forward to the day when we will be reunited.

Funeral details to follow.

Shannon

Heavy Hearts, Thankful Hearts

Lucas slipped into a Coma sometime in the afternoon yesterday, Sunday, as he was being held by loved ones. Our hospice nurse came out last night to confirm his unresponsive state as a Coma. We are grateful to all who have come to visit and as always to all those who have been Angels to us throughout Lucas' struggle. Our faith is strong, but our hearts are broken. We feel a calm assurance that Lucas will be fine and soon will be with his Father in Heaven and his Savior. We lovingly and respectfully ask that visits be limited to immediate family and please understand that we would love to visit with everyone, but our time with Lucas seems limited. We appreciate your continued prayers for our family as it has given us much strength and support. I wish we could give more personal responses to all of your comments and acts of kindness, please take this as our way of saying thank you from the bottom of our hearts.

Lucas is a very special boy sent to unlock the love in people's hearts and teach us lessons we might not otherwise learn. It seems his mission is drawing to a close. We love you our friends. Thank you.

-Aaron

Our Hearts are Broken...

I am sorry that I have not updated until now. It is 4:30 am and I have been up for the past hour rocking our sweet little boy. He was not awake but I couldn't sleep and just wanted to hold him. The past couple of days have proved to be quite difficult as we received bad news the morning of the 26th. Lucas' tumors have grown and spread to his brain. There is nothing more the doctors can do for him at this time but to try and make him as comfortable as possible. They predict he has weeks to live and not many. We are devastated. We had high hopes that he would be one of the few that would make it and live a long and happy life especially after the last MRI results 2 weeks ago showed much improvement. I will never understand cancer, but I do understand the plan of salvation and that brings me much comfort. We have had many family members and friends come to visit in the hospital and it has been difficult to find the time to blog. My thoughts were racing as I laid in bed just trying to imagine what life is going to be like without our sweet Lucas. I know that he will be in good hands. It is not him I am worried about, it is those left behind. I remember being in the hospital with him after he was born and just gazing at his sweet face in awe of how special this little guy was. What would he have to offer this world and what would his mission be to complete here? What would be his hopes and dreams and who's lives would he touch? Little did we know he would touch more lives in 8 months than some people do in a life time. How lucky are we to be parents of such a sweet spirit and how much we have learned from him who has yet to udder a word. As I was rocking him tonight I was begging Heavenly Father to comfort me as the tears wouldn't stop and it was as if His arms literally wrapped themselves around me in a warm embrace. I am so grateful to have a loving God who hears and answers me when I need Him. He is never to busy. Lucas is comfortable and he is on a continuous morphine drip. He doesn't seem to be in pain and our prayers to comfort him have been answered. After much discussion we have decided to bring him home tomorrow on hospice. We feel it would be more comfortable at home and the boys need to spend time with their baby brother to create as many memories with him as possible. We told them the other night and I was very impressed with their reactions. Aaron did a great job of explaining and used a latex glove as a visual aid. He held up his hand using it as our spirit before we came to earth. By placing it in the glove it represented our spirit entering our body. Then he took out his hand and and left the glove behind as his spirit (hand) went up to be with Jesus and Heavenly Father in Heaven and the body (glove) is left here on earth. I'm not sure they will really grasp what's happening until the funeral, but Kaden showed a lot of emotions and cried sincerely for about 45 seconds. Then he quietly asked if we could go downstairs and get a treat. Such is the mind of a 6 year old who loves his sweets. For some reason, chocolate isn't bringing me much comfort. My knowledge of the real fact that we will meet again does and that this life is so short in the grand scheme of things. I know that there are loved one's on the other side anxiously awaiting his arrival although he hasn't been gone for long. He has come and completed his mission and purpose with flying colors and I am so proud and honored to be his mother. We are promised in the scriptures that He will never give us a trial to heavy to bear. Wow. I honestly used to think that I could handle just about anything.....anything except losing a child. Well, I can honestly say we don't know ourselves as well as our Heavenly Father does. Will this be difficult? Of course it will. He never said it would be easy, He only said it ,would be worth it. I don't have all of the answers as to why this is happening to us. And I know that I probably won't understand until the day comes when we are reunited. But, I have faith that all things are for a greater purpose and I'm honored to be the mother of such a sweet little spirit. Aaron is taking time off work and we are going to go home and cherish every last second we have with him. Life isn't fair. Cancer sucks. God is real and life will continue. Lucas, you are loved more than you will ever know. I know many of you are wondering what you can do for our family. All I can think of is pray. This difficult time is not over and the worst is yet to come. Please continue to pray for us to feel peace and that Lucas will remain comfortable. We love you all so much and thank you for being a part of our lives. We couldn't have done this without you.

Love,
Shannon

Another MRI?

My grandma is at the hospital with Lucas and she told me today that they want to do an MRI this afternoon at 3:30 of his brain and spine. He just had one not quite 2 weeks ago. However, due to the difficulty of managing his pain, they want to see if there is anything else going on that would be causing him so much discomfort. They will also be doing a procedure in which they move his feeding tube past his stomach and place it directly into his intestines. By it bypassing the stomach he shouldn't be able to throw up which he's been doing a lot of. I feel completely helpless and it breaks my heart not to be able to ease his pain. I'm so scared of what the MRI will show. Last time it was good news but the thing with these tumors is that they are so aggressive, it's unpredictable and anything is possible. I just hope whatever they find can be easily fixed. I know that there's a possibility of them coming to us with the news that he needs to have more of the tumor removed surgically. I'm terrified of this because of the location. It is literally wrapped around some very sensitive nerves in the neck and the possibility of him having permanent paralysis is quite high. I will be going to the hospital in the morning to find out the results and spend some time with him. I recently received a message from the grandpa of Lucas' little friend Travyn who just finished his last cycle of chemo and is done with treatment. He shared with me a story that I found so appropriate and I would like share it with all of you.

The Brave Little Soul

Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, "Why do bad things happen; why is there suffering in the world?"
God paused for a moment and replied, "Little Soul, do not be sad, for the suffering unlocks the love in peoples hearts." The Little Soul was confused. "What do you mean?" he asked. God replied, " Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone."
The Little Soul began to understand and listen attentively as God continued, " The suffering soul unlocks the love in people's hearts much like the sun and rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this-it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer-to unlock this love-to create this miracle-for the good of all humanity."
Just then the Little Soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the Little Soul excitedly replied, " I am brave; let me go ! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!"
God smiled and said, "You are a brave Soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you."
God and the Brave Little Soul shared a smile and then embraced. In parting, God said,"Do not forget Little Soul that I will be with you always. Although you have agreed to bear the pain, you will so through My strength, And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed."
Thus at that moment the Brave Little Soul was born into the world, and through his suffering and Gods strength, he unlocked the goodness and love in peoples hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys-some regained lost faith-many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and Love reighned. Lives changed forever. It was good. The world was a better place. The Miracle happened. God was pleased.

Thank you all for your continued prayers on behalf of our brave little soul....

Shannon

Well, we are still here at the hospital. Two nights ago Lucas slept pretty good through the night only waking up once. Last night he woke up 3 times in a lot of pain. The best way to describe the crying he makes when in this kind of pain is imagine going to a pet store and listening to the birds chirping. It's so high pitched it almost hurts your ears. He received morphine twice last night in addition to the oxycodone, Tylenol, benedryl, zophran, and ativan. This morning the decission was made to try something new to control his pain. Methadone. Yes, this is what Heroin addicts go on to detox. The only reason I'm fine with this is because what we've been doing isn't enough to keep him comfortable. The pain is definitely coming from his neck and the nerves in his shoulder due to the tumor irritating it. That doesn't mean that the tumor is growing, it just means that there are obvious changes going on which are effecting the nerves. This is a pain that he will most likely have for months to come and so we are trying to figure out a plan for pain management that he can safely take at home. I told them I refuse to take him home until his pain is under control. It's just to heartbreaking listening to him scream and yet I'm giving him everything he's been prescribed and it doesn't work for more than an hour. I felt helpless at home and I'm not going to feel that way again if I can help it. Please pray that Lucas can be relieved of his pain while going through chemo. Aaron is here with me today and the boys are at my mom's. I know that they want to keep Lucas here a couple more days to make sure that the methadone works and it takes a couple of days to set in and do it's magic. Thanks for all of your support.

Shannon

Change in Plans...

Well, I took Lucas to the hospital on Wed morning to have a Lumbar Puncture to check for cancer cells and also to admit him for his next chemo. They found a lot of red blood cells in his spinal fluid and I'm still waiting to hear what that means. Oh and also if there were any cancer cells found I have yet to find out. While he was sedated they cleaned out his ears and discovered he did have an ear infection which would explain why he has been in so much pain this past week. Boy did I feel terrible for not taking him in sooner. He didn't have a fever and they reassured me that being nauseous and irritable is common for what he's been through. So, once he was admitted they started him on an antibiotic and now the infection is gone. The only problem is, he is still crying all the time. And it's not a normal "I'm uncomfortable and don't feel good" kind of cry, it's high pitched and really hard to listen to. He's definitely hurting somewhere. I was supposed to bring him home today and they decided to keep him until they can figure out what's causing the pain. He had a CT Scan this morning which showed no changes since the last one so that is good news. The bad news is we still don't know what is hurting him. I'm really hoping it's chemo related and not something more serious. Once the chemo leaves his body, if he's not calm by then they will probably do an MRI even though he just had one done 9 days ago. So, pray that the pain can be managed until we find out what's going on. Kaden had his first day of school yesterday and it was kind of a difficult day for him. Today was better and he had more fun. I think he was a little unsure because he only knew 1 little boy in his class from last year. My grandma stayed with Lucas the past 2 nights since my mom ended up being sick. Thanks grandma!!! Well, he's awake now and fussy so I will update later.

Shannon

Bawling, Barfing, and Bald....

Well, the past few days have been a little unpleasant. Don't get me wrong, being home has been wonderful. However, Lucas has been really fussy and has had a hard time keeping anything down. I thought that he would be happy and eat like the last time we came home after his first round of chemo. Well, I'm lucky to get him to drink one feeding a day out of his bottle. The rest I have to put down the feeding tube just to have him puke it up. He's on his medications, however, I just barely got his Zofran for nausea at 10:00 tonight from the home health care pharmacy. There are issues with our insurance needing pre-authorization for this medication and so we have been unsuccessful in getting it from our local pharmacy and I will have to call them in the morning to find out what is going on. I'm worried he is dehydrated because today he slept most of the day and just laid there when he was awake. Hopefully tomorrow will be a better day. Oh and before I forget, Aaron shaved Lucas' head yesterday. We'll post a picture soon. It's been nice being home and having some kind of normalcy again. We had our friends the Huish's come by with some brownies tonight and it was so great to visit with them. They recently lost their 6 year old daughter Sadie to a brain tumor and are such and inspiration to Aaron and I. What a sweet family. I'm so humbled at how supportive they are to us amongst their own trials at this time. I'm so grateful to have friends who love us and are so sincere when they say they want to help in any way. Lucas goes back to Primary Children's on Wednesday to start his next round of chemo. Hopefully we will only be there a few days. And might I add that I absolutely love the staff there. Lucas was scheduled to be admitted on Thursday and I expressed my disappointment in missing out on Kaden first day of school. Well, being the awesome people that they are they moved around the schedule and were able to get us in a day early. This way I can come in and do all of the admit papers and then my mom is planning on coming to the hospital that night so that I can go home and get Kaden ready for school on Thursday morning. Then I will come back to the hospital Thursday night and be with Lucas while he finished his chemo. It will work out to be a win win for everyone.

Shannon

The results are in...

So today has been filled with a lot of waiting. Not knowing the results of the MRI from yesterday and then being unsure of the treatment plan Lucas will be getting has been difficult. But the wait finally ended and we got our answers. First, the MRI clearly shows that the tumor is responding well to chemo. All of the solid tumor growth from the last MRI compared to yesterdays shows they have shrunk considerably. YEAY!!! There are a few pockets of fluid around the spinal area that the doctors aren't really sure about but said they would keep an eye on it. Next, for those of you who aren't familiar with AT/RT, the location of Lucas' tumor is not exactly textbook. Most tumors are found in the brain, spinal cord, or kidneys. Well, Lucas' is somewhat unique in the fact that his is not only in the spinal area but also branches out to the right shoulder/chest area. According to Dr. Brugger's his oncologist, there is a treatment plan for tumors found in the central nervous system (brain, spine) and a different treatment for those found outside of the CNS. And because this tumor is considered to be in both areas, they have to combine the two treatment plans to make sure they get it from all angles. So, basically his treatment will last about 3 months longer than your average AT/RT treatment. So, here's the road map they have laid out for him. We get to go home tomorrow and then be back probably next Thursday (which just happens to be Kaden's first day of school....I know....I'm so bummed) to be admitted. He will then undergo 4 rounds of chemo drugs used in treating the tumors found outside the CNS. The nice thing is that with these being normal doses, he will only be in the hospital for a few days. Then we get to bring him home to recover for a couple of weeks until his counts are back up. We will do this 4 times. Then, he will start his high dose chemo which he will probably do 3 cylcles. He will be in the hospital longer with these rounds because of how harsh they are. He will get a stem cell transplant after each round so that his bone marrow can recover. (Oh that reminds me, he had them collected today and that's a big step. It went well without any major complications. They will be frozen until needed for transplant.) Last he will do radiation therapy for 6 weeks. They want to wait until the very end for this because they want him to grow as much as possible because of the long term side effects that radiation can have on kids this young. So, that's the plan. It's going to be a looooong road but it's all worth it if it can save his life. We are willing to do whatever it takes to fight this battle. Thanks for all of your love and support. I'm so grateful for a day full of good news!!! We have so much to be thankful for.

Shannon

Sooooo Frustrated!!!

I'm sorry I haven't done an update yet. This whole weekend while home with the boys we had different family members stay at the hospital with Lucas and the game plan was constantly changing. In fact, I still don't know what's going on. All I do know is that he was scheduled to get his stem cell harvest done this morning and because his counts dropped again on Saturday and are not yet where they want them, it's been postponed yet again. He has had a couple of platelet and blood transfusions and he will be getting another one this afternoon. His counts were only at 400 this morning. Then I heard from family that the Dr Brugger's wants him to have 4 more rounds of chemo before starting radiation treatment. The original plan was to do radiation next and then 3 rounds of chemo to end. I'm so confused? They haven't even done an MRI to know if the chemo is even working to shrink the tumor. I guess he is scheduled to have one done tomorrow so hopefully that plan won't change. I'm curious to know but also nervous for the results. We decided to take the boys out of soccer this year and we will be getting a refund thank goodness. I just don't know how much time we will have for extra stuff right now. Getting Kaden to do his homework every night is going to be time consuming enough. They understood and there's always next year. And to all of you who have offered to help with the boys, thank you. You just might be getting a phone call once school starts. Life is going to go from crazy to crazier. But, we have to do whatever it takes to get through this trial. I took the boys to church yesterday and I'm so glad that I was in Sunday School class to hear the lesson. It was on trials, why we have them, and how we deal with them. It was exactly what I needed to hear and the spirit was so strong testifying to me that everything will be just fine. We just need to endure to the end and trust in Him who is all knowing. I continue to grow so much from this experience and I've seen so many blessings that have come from it. I know we aren't even close to the end of this journey but I know that we won't have to walk it alone and that brings me so much comfort. I love you all and appreciate all of your prayers on our behalf. I will update tomorrow once I have more information.

Shannon

Home for the Weekend

Well, we are home with Kaden and Jonas this weekend and I must say that it feels soooooo nice to be out of that hospital room. The only thing I love about it is that Lucas is there. It's almost been 3 weeks since he was admitted and I can't wait to see his excitement once we are allowed to bring him home. His counts came up a little and went from 0 to 200. He needs to be around 10,000 for them to do the stem cell harvest. We are hoping it will happen next week. He had yogurt today for the first time and LOVED it!!! He still doesn't want anything to do with the hospital formula so he continues to get his nutrition through a feeding tube. The doctors think the yogurt will also help the bacterial infection he's still trying to fight off. He received a bath today and was pretty happy for the most part. He practiced sitting up a lot as I kept him distracted with toys. He's at the age where he enjoys just smacking his hand or other toys on stuff just to make noise. It's amazing how something so simple can entertain him for hours. Tonight we spent some time cleaning and surprisingly the boys wanted to help so badly. I let them windex the mirrors and clean them. Kaden had the opportunity to vacuum for the first time. It was challenging because our vacuum is heavy for him, but he managed to do a pretty good job. (With the exception of accidentally sucking a Bakugan Ball up the tube and it got stuck. Aaron was able to get it out thank goodness!!) We miss our boys when we are away from them and it's always good to spend time with them. We get to go to our friend Austin's Birthday Party tomorrow. He's turning 8 and the boys are very excited. It will be fun.

Shannon

Still Waiting....

So, the plan was for Lucas' counts to be high enough for him to have his stem cell harvest sometime the beginning of this week. Well, his counts are still at .1 which means we will be in this hospital room for at least another week. He contracted a bacterial infection that he is currently on antibiotics for and they think that's the reason his counts are not soaring. So, we wait. Lucas has been doing well as long as mommy is holding him. He seems to be fussy when I lay him down so naturally I've been holding him a lot. He is getting so big. Yesterday for the first time I noticed that he can now sit up on his own. This is great progress considering how weak his neck muscles were after surgery. He was like a new born again with a floppy head. He's really doing well and the physical therapist is very happy with his progress. I'm so proud of him for how well he's doing. I'm starting to get a little nervous about Kaden starting school on the 20th. He will need a lot of our attention with school work, activities, etc. and I don't want to downplay the importance of being there for him. Also, we registered both he and Jonas in soccer before all of this stuff happened and I'm on the fence on whether or not we should keep them in? Practices and games start soon and they are held during the week at 6:00 pm which basically means Aaron will miss everything and I don't know how much I want Lucas out and around other people. The boys have been looking forward to it but under the current circumstances they might have to wait until next year. Why can't they just do them on Saturdays like last year? It would be so much easier. Oh well. I can't really complain about stuff as frivolous as that when I feel so blessed that Lucas is handling everything so well. We are so grateful that he hasn't had any serious complications yet. (Quick, someone get me some wood to knock on.) Well, I will send an update when changes start to happen. As for now we are just hanging out until his poopies get back to normal and his counts start to rise. Thanks for taking the time to read our updates. It means so much to us that you all care so much!!





Love, Shannon





P.S. Aaron, you are the greatest husband ever. Thanks for everything you do to make my life easier. You are so thoughtful and I love you!!

HAPPY ANNIVERSARY!!!

Today Aaron and I celebrate 9 years of marriage. And believe it or not we still like each other. Lucas is having a great day. The last medication has cleared his system and now it's just a waiting game to see when his white blood cell counts that fight infection (ANC counts) are high enough to start his stem cell harvest. They will filter his blood and take out what they need and replace what's left back into his body. They will freeze these cells until he starts his last 3 cycles of chemo. (The last 3 are considered are high doses of other medications that will completely wipe out the white blood cells in his bone marrow.) They will then introduce the harvested cells to help the bone marrow build up again. Basically he's giving himself a bone marrow transplant. It's really amazing what they can do now with treatments. He's been really happy today and the nurses keep saying how great he looks and how well he's doing. It makes me happy that he's not in any pain. We keep working with his arm to get movement restored. It will take time but each day there's a little more improvement. I'm so grateful for all that I've learned through this experience. It's taught our family what we are capable of and that the Lord really doesn't give us anything we can't handle. I once thought when I would hear stories about other children who were sick that I could never have the strength to get though something like that. Might I suggest never saying that to yourself because here we are dealing with it. I guess I should have knocked on wood a little bit harder. Well, thanks again to all of you who have supported us. It really does help to ease the burden. I love Lucas so much and this morning we rocked in the rocking chair for over an hour listening to lullabies. I cherish every moment I have with him. I feel so bad for Aaron because lately by the time he gets to the hospital after work Lucas is asleep for the night. Hopefully he'll be able to enjoy him more awake tonight. I love you baby and happy anniversary!!! I guess it's redbox and take out tonight. Thanks for our boys and for being the most amazing husband, father, and best friend!!!

Shannon

View from Primary Children's Hospital

I didn't get to spend a lot of time with Lucas tonight because he was pretty sleepy by the time I got to the hospital after work. I got to see him smile though and that makes my day. The Chemo made him sick today. I will spare you the details, but he wasn't feeling well this afternoon. He has done pretty well tonight though. Thanks for the continued prayers and support.

Tonight I decided to take a few pictures of the view from the hospital. I went to the top of the parking garage and took a few pictures. I am posting one of them. I have to look for the little opportunities to keep my sanity, and experimenting with my camera is something that allows me to take a break.

-Aaron

On a Sunday afternoon

I am up at the hospital with Lucas today. I was really excited to spend time with him because I hadn't seen him since Thursday morning. We had a great weekend with the boys. We did a lot of fun things, it's like we are trying to make up for the rest of the week in a couple of days.

Tony, my brother-in-law, stopped by and brought me lunch, thanks Tony! It was good to chat for a while and it was good to have you here. I think Lucas liked seeing you.

Today Lucas is starting the drug Cisplatin. In the words of the nurse, "this is nasty stuff." This round of Chemo Lucas is getting full strength doses of the drugs, where he was only getting about 85% doses in the first round. Thankfully Lucas seems to be sleeping a lot from the drugs they are giving him, I hope that he can be comfortable through the next 24 hours. The nurse, Joan, said that there is a 100% chance of Lucas throwing up from this drug so they are giving him other drugs to help with the nausea. A question that I have been asked a few times lately is, "When will they know if the treatment is working?" The answer to that, I believe, is the next time they do an MRI. I think they will do the MRI either after this round of Chemo, or after the six weeks of radiation, which is scheduled to happen after this second round of Chemo.

I was still able to get Lucas to smile this morning and that always brings me comfort. So all in all he is doing well.

-Aaron

Hangin' out with Kaden and Jonas

So on the weekends it is our opportunity to spend time with Kaden and Jonas. Shannon was at the hospital today so I took the boys to Thanksgiving Point, to the Dinosaur Meusem and Farm Country. We had a good time together, sometimes I think our boys are pretty spoiled, but they have been good sports through all of the craziness that has been going on. Thanks to all who have been helping watch them during the week. I don't know what we would do without you.

After Thanksgiving Point we went to McDonald's so the boys could play to their hearts content. I always have to tell them they can't play until they have eaten their food or they just play.

After Micky-D's we went to the Home Depot, so i could buy a two dollar item, and the boys drove the racecar basket around the store and we pretended that we were going to run into everything in our way, narrowly missing it at the last second. Being a parent can be challenging at times, and at others, so rewarding. We are so grateful for all our boys and love them so much.

Tonight Shannon will be home and we are going to an activity put on by the city. I think we are going to watch an outdoor movie on a big screen. It should be fun.

Digging up Bones

I tell Jonas "No" at the beginning of this video because he was flinging sand over the wall with the brush :).

Ugh, I am soooo tired...

The last couple of nights have been rough even with the luxury of an air mattress. The nurses are coming in every 2 hours and then Lucas wakes up on top of that. It's definitely nicer being at home in our own beds. So, one of the chemo meds that Lucas received Tuesday night is called Methotrexate. It's highly toxic and everyone that changes his diapers is required to wear gloves. It's not good to have it on your skin. So anyway, Lucas has been on a peeing rampage lately whenever his diaper gets changed. He's gone all over a few of his p.j.'s and blankets and because the stuff is bright florescent yellow,(seriously...it looks radio active) anything that comes in contact with it has to go through the wash twice in hot water. You wouldn't want to wash these items with other clothes or they would become contaminated. It's crazy how careful they are with a baby's urine. I can't believe that we are pumping his body full of this toxic stuff. But I guess it's the lesser of the two evils. Yes chemo is crappy, but cancer is worse. He seems to be doing really well this time around. So far no sign of a rash. They started him on benedryl 24 hours before they started the chemo just in case he breaks out. Well, I am really tired need to turn in for the night. Sweet dreams everyone...

Shannon

At the Hospital Again

This morning we came to Primary's to have Lucas' hearing checked. Both his kidney function test yesterday and his hearing test today went smoothly and everything is normal. He was admitted to the ICS unit after coming out of anesthesia and we are just trying to make it comfortable for him. He hasn't even started his first chemo med yet and already he's being a stubborn eater. It's either that he doesn't like the formula here at the hospital or that he's away from home. It's probably both. I have a feeling the NG tube will be back in soon. Well, not much else to report. Hopefully he won't break out in a horrible rash this time around. Kaden and Jonas are staying with my parents and went to a water slide park today and had a blast. I got to hear all about it over the phone. I can't believe how fast they are growing up. Work has begun on our basement and we are so grateful for the individuals who are donating their time and skills to make it happen. Thank you all so much!!!

Shannon

Well, Lucas managed to yank out his feeding tube yesterday. I didn't bother to put it back in because he is eating so well. I hope the nurses don't get mad. I just figured the poor little guy should have a break from it since I'm sure they will put it back in on Tuesday. We had a great weekend just chillin with the boys. Kaden and Jonas went to Cookie Cutters and got their mops cut yesterday and they look so good. Sure it's free to have daddy cut it, but it was more for the experience. They loved it. They start soccer next month and it will be interesting as we try to juggle time with Lucas and coming to games and practices. Also, Kaden starts first grade. "YEAY FOR ALL DAY SCHOOL!!!" Oh, did I type that out loud? It's going to be a challenge. We will just have to make it work. We want to be there for them equally as much as we are with Lucas. It has been great having him home but I must say I'm quite anxious to get him started on his next round of chemo. Dr. Bruggers said that they will most likely do another scan after this round to see if the tumor is responding to treatment. I know that he hasn't been in any pain since he's been home. He has been so happy and normal, (with the exception of his gimpy right arm.) I really hope that he can regain strength because it's going to be difficult for him to learn how to sit up, crawl, even roll over without the use of one of his arms. I know that kids are resilient and that they find a way to compensate. It will just take him a little longer to learn these important developmental milestones. I've been doing a lot of research on the Internet regarding the clinical trial treatment he is on and I must say that my head is spinning. There is so much information (bad and good) and it's overwhelming. Oh what I wouldn't do for a crystal ball right now. I know, I know, then I wouldn't have to exercise faith. It's just so hard not knowing what the end result will be. Will he be a cancer free survivor and beat the odds? I really hope so. And unless the doctors tell us there is nothing more they can do, we believe that he will fight these battles and win the war. I have to take him to Primary's in the morning to have a kidney function test done. Then he will have a hearing test on Tuesday before they admit him for round 2 of chemo. And yes, the air mattress is definitely coming with us this time. (Thanks mom and dad!!!) Love you all and thanks for your continued prayers and support.

Shannon

Good to be home!!!

Lucas was released from the hospital yesterday afternoon and it has been so nice but very overwhelming. A rep from our home health care co. came by last night and went through a number of things with me and anxiety doesn't even come close to how I'm feeling right now. He is on so many medications which need to be given every 2,4,6or 12 hours. There's so much to remember. In the hospital the nurses would come in and say, "O.K. it's time for this med or this shot or this cream," and I would give it to him. Now, it's all on me to remember every measurement, frequency, if it's refrigerated to let it get to room temp, etc. Needless to say I didn't sleep well last night. I need to teach Aaron how to administer some of this stuff so that I can have some help. But I must say, Lucas couldn't be happier. He must feel relieved to be out of that hospital room. I know I am. Kaden and Jonas spent the night at my parents the last few nights and came home early this morning. They were so excited to see Lucas but seemed a little nervous looking at all the tubes hanging out of him. One cool thing is that since he's been home, he has guzzled his formula down. Hopefully I won't have to tube feed him very often. His arm seems so be moving a little more every day which is a good sign. He also doesn't seem to be in any pain. Dr. Brugger's said that it's an indication that the tumor is shrinking. He has to go have some tests done to check his kidneys and hearing between each round of chemo. It can cause side effects and so they monitor him to see if they need to lower the dosage of chemo for next time. I hope everything comes back normal. We also sent out the paperwork to get genetic testing done. They will test Lucas' blood to see if he has a mutation. If he does, then that means that either Aaron or I is the carrier and all of our kids will have a 50% chance of having AT/RT. If Lucas doesn't have the mutation then it was random and the chances of any of our other children getting it is slim to none. We would like to find out because if we are carriers, then Kaden and Jonas could get tested and we would be more aware of symptoms and get them scanned. Lucas is scheduled to start his next round of chemo Tuesday of next week. Well, I better get some things done around the house while I'm home. And maybe take a nap to catch up from last night.

Yeay, we get to go home!!!

Tomorrow is a big day!! Lucas' counts are high enough that he gets to come home. I will be talking to the oncologist tomorrow to discuss when to start him on his second round of chemo. Most likely it will be sometime this weekend or the beginning of next week. He is doing so well. His rash is gone and he received another blood transfusion today and had no negative reactions. Due to the fact that he had been having fevers they had him on 3 different antibiotics. They took him off 2 of them today and wanted him to stay one more night just to make sure there are no surprises. We borrowed my parents air mattress and slept on it last night. Why we didn't think of this sooner I don't know. But it is so much more comfortable than the little chair/bed they had us in before. Today while I was kissing Lucas on the head, I pulled away only to have hairs stuck to my lip gloss. His hair is totally falling out. I ran my fingers through it and it reminded me of when a dog sheds. I'm so glad we have taken a lot of pictures of him with his hair. And soon we will get to take pictures of him bald. He was so happy today. He was squealing and blowing spit bubbles and the whole works. I love to see him happy especially under the current circumstances. It's hard to be sad when he's so happy. He lifts my spirits and makes me laugh which is exactly what I need. His aunt Marnie was able to take him out on a walk around the hospital yesterday which he absolutely loved. Aaron's mom and dad were able to come stay with him this weekend and my brother Jake and his girlfriend Michelle were with him on Saturday. I'm so thankful that everyone is so willing to come and stay with Lucas so that he is never alone. It gives Aaron and I the opportunity to come home and be with Kaden and Jonas. I know they are excited to see their baby brother tomorrow and I can hardly wait to see how Lucas reacts to being home. He's been stuck here for over 2 weeks. It will be good and hopefully he will eat better at home. I'm hopeful that this regimen of chemo and radiation will work to shrink his tumor. There is another little boy (Travyn) who is 10 months old down the hall who has AT/RT also and is doing great!!! He has gone through radiation and just finished his 3rd round of chemo. His mom Whitney is so adorable and sweet. We have been chatting quite a bit about our experiences and they are very similar. This tumor is so rare that only 20-30 are diagnosed each year in the U.S. and so to have another case right here in Utah is so unusual. We are lucky to have each other for support because we can actually say that we know how the other feels. Travyn is so cute and has made leaps and bounds and his progress gives me so much hope. I love this hospital and the staff are incredible. Life is good!!!

There are no words....

Today's fundraiser was such a success. It was nothing short of AWESOME!!! There were so many things donated and the baked goods were to die for. My parents were able to bring their big bouncy house for the kids and my aunt and uncle arranged for a professional snow cone machine to be there which everyone (especially the kids) loved!!! It was seriously the funnest yard sale I've ever been to. During the clean up Aaron made the comment that it looked like a carnival had been to the Proctor's front yard. (Roger and Kelli, we love you!!) We are overwhelmed with every one's generosity. I personally want to thank all of those who participated whether it was with your time or in donations. I'm so glad that Aaron and I were there to see it all in action. It was so humbling and we were able to meet many new friends. I was having a difficult time holding back the tears. We feel so loved and appreciate all the prayers and support on our behalf. Lucas has had a fever for the past 2 days and they have him on antibiotics and Tylenol. The biopsy site on his leg has become irritated and red and they did a blood draw yesterday to see where the infection is coming from. It's difficult to get all the information since I'm not there this weekend. His counts are now up to a whopping .7 though. I did talk to my mother in law who is with him tonight and she said that he didn't feel to warm so his fever must be under control. She said she would call if things took a turn. She hasn't called back and so no news is good news. Aaron will be going to the hospital tomorrow to stay with Lucas so I will have him do an update then. Much love and appreciation....Shannon.

Still happy through it all

Lucas has no immune system. His white blood cell counts as of this morning are at .1 which means he is extremely susceptible to infection. Considering he shouldn't be feeling well at all he is still happy. Babies are amazing. They are so resilient and bounce back so quickly. Something cool happened today. He was moving his right arm ever so slightly at the elbow which is an improvement. He hasn't been able to move it in over a month. We are hopeful that with time he will be able to regain most of the movement in his right arm. All of this week the nurses have been showing me how to take care of his medical needs at home such as his feeding tube, central line, shots, etc. It's been good for me to learn these things hands on. I am a visual learner and although I appreciate all of the handouts I have to read, I will feel more comfortable if I leave with some experience. I love the staff here. The nurses are amazing and they all adore Lucas. Aaron and I came home to be with the boys this weekend and I was so excited to see them. I miss them so much and look forward to having some fun with them. It's good for us to take our minds off of the hospital routine once in awhile. Well, Lucas will be in the hospital until his counts reach at least 500. I have a hunch we will be there next week as well. Unfortunately there is no set schedule with chemo recovery. Every child responds differently and they can't start the next round until his counts are up to around 1500. It would be nice to have him home but I understand that it's safer for him at the hospital right now. Until then we are making the best of it!!