Living

Today was another fulfilling day of house cleaning. Spencer has been getting more and more sarcastic, which is my gauge to his healthiness. He must be feeling quite well. He still is not eating by mouth so we have his feeding tube running continuously. Even with his feeds he has still been getting dehydrated because of he will not drink either so I have been supplementing his tube with Gatorade 2-3 times a day. His "food" is just Nestle Peptomen Jr. with Fiber which is like a Vanilla PediaSure type of formula. Our goal is to have it running at 90 ML an hour and we have recently been able to get up that far. Usually after chemo we have to start between 50-60 ML/hr so I am happy now to having it going full blast. I put 8oz of Gatorade in the tube and run it at 240 ML/hr (8oz=240 ML) so he will get an 8 oz "cup" of fluid in an hours time. It seemed to go well. It did not bother his tummy. If I am able to do 3 of those a day then that should satisfy his required daily intake of fluids. He has his blood drawn today and the labs turned out FABULOUS! This is my blessing today. His ANC went from zero to 3.0 (3000) in four days! We still have five more days until chemo for his counts to go up more so we will be at a good starting point, better than last time! (Thanks for the prayers!) I was able to get bathrooms cleaned and rooms straightened and organized. While I was making my bed I put Gavs in my empty bathtub. He loves playing in there. He had a riot knocking down all of the shampoo's, conditioners, body washes, whatever he could get his hands on. I took some cute pics of him playing around! He is just so dang cute! I cannot believe that he will be one in just a couple of weeks! Crazy! When Nate came home and after dinner we watched Harry Potter: Half Blood Prince with the kids. We made fresh popped corn drizzled with butter and salt and Isabelle insisted on Parmesan cheese on hers. She said "Grandma Suzi makes the best popcorn and she puts Parmesan on hers." Well alrighty then! I forgot how much I love Harry. We had an enjoyable time as a family. It was fun to all be together. Now it is bed time. Much earlier than the last few nights but my body is yelling at me to make it sleep at a decent hour. I thought that I would attempt reading a book (my favorite pastime) but realized that I just cannot quite focus enough yet to do so. Ever since Spencer was diagnosed I just have not been able to pick up a book. Almost there though! I included a picture of Spence holding his awesome BRAVE shirt from sweet little Lizzie in California. I never found my camera USB but Nate replaced it for me so I will be much better at uploading pictures. Since numbers are up we are going to attempt some low key fun tomorrow until we have to be quarantined the next time! I have noticed that he looks so white in the pictures that I have been taking of him lately, and today I finally realized why. His eyelashes and eyebrows and starting to fall out (sniff sniff). He had long dark eyelashes and now they are no longer. I told him we will get him a spray tan and some fake eyelashes but he did not really go for that! My cousin Hillary was here last week visiting and helping me with the kids. It was a very relaxing week. One of the days we went to Rumbi with Belle and Gavs and then did some shopping at Costco. I don't know why I only took pics at lunch and no more before or after bummer! We love you Hillary! Thanks for the fun time.

Continuous

Today has been filled with many blessings. I am not quite sure where to begin. I had the opportunity to scrub my house. It felt so wonderful to do normal things. Spencer has been feeling well the last couple of days. His personality is him. That is a huge blessing. I cannot even explain to those of you who do not know him personally what an incredible boy he is. Cleaning the main level of my home gives me joy. Bleaching, scrubbing, mopping, dusting, these are therapies. This is the first time in three months that I was able to clean for myself. I have had many lovely friends clean for us, and I have been able to do surface cleaning, but today I got to go into another world. I turn my music up (Jack Johnson is my house cleaning music of choice) and I scrub my way into a different world. I love, love, love when Nate gets to come home to a sparkling house. It makes me feel strong, it makes me feel womanly. These things may be sexist and demeaning to some but for me have a "house of cleanliness" is an accomplishment beyond comparison. After Nate got home I jumped in the shower to get ready for my Girls Night Out. I feel blessed to have a husband who does not complain (much) when I need to get out. He is very generous with sharing his time with my girlfriends, and I try to give him that same "freedom" with the boys. It is Nate's sister's, Melissa, birthday so we went to Red Robin and a movie, Date Night, which was hilarious. It was good to laugh. Nate was watching the Jazz game with his friends and so Melanie, Tiffany and I decided to stay and watch THE LAST SONG. I knew what I was getting into. I knew that the father dies of cancer. I knew it may potentially ruin the positivity of the day. I felt ready to "conquer" the movie. I have cried so many tears that commonly fail my emotions and I oftentimes have to search for them. Tonight was no exception. I was the only one not crying. The movie helped me to recognize even more blessings in my life. Miley's character, Ronnie, was out of the ordinary, she did not quite fit in. She was unsure of her femininity, and her trust of people. She was a little "punk rock" but with a bookworm twist. All of these qualities are traits I have always perceived myself to be. Watching Ronnie deal with the degression of her father's health to his ultimate death, gave me more blessings to ponder. I think that losing a parent may be more difficult than losing a child for different reasons. Right now in my life, losing a child, losing my child, is the most heart wrenching trial that my poor soul could fathom. Although, this circumstance may be my worst fears made alive, I would endure. My faith allows me to be with my child again someday any my maturity of life experience gives me the ability to understand and reason life and God and heaven, but I think as a young child to lose a parent would be devastating. The lack of life experience, of previous heartache, does not give consent to reason. The movie was set on the beach. Although, on the East Coast, i felt thankful for the blessings of growing up near the ocean, on the West Coast. The ocean, for me, is medicinal. It has always been able to calm my soul. Its vastness has always confirmed my faith and sparked my wonder of life. Love, of course, was the underlying theme of the movie, in every form, and I became very aware of all of the love I have in my life. I love my Nate. I loved him from the first moments I met him. I love the way he values loyalty. I love his face. I love his body. I love his work ethic. I love his hands. I love his "not often enough" kisses. There are many things about him I love that I do not tell him "often enough". It made me aware of my love for my friends who fight with me. They are what my friend, Heather, calls "trench friends". They, you, are with me now, fighting in the trenches. I became aware of my love for music, for writing, for reading, for academics. I became even more aware of the intense love that I have for my children. I love them beyond all comprehension. I have so many dreams and wishes for them. I love every hair, and in Spencer's case,every peach fuzz, on their bodies. They are my purpose in life, and were created in the most intense kind of love. I am thankful for today. I am thankful for the opportunity to write. I am thankful for another day with my boy, with my husband, with my daughter, with my funny baby guy.

Recognize

There is not a lot to report today. It has been a pretty uneventful day. Nowadays "uneventful" is good! My cousin Hillary has been staying with us for the week and sadly she had to leave today. We had an enjoyable week sitting around doing absolutely nothing, and watching TLC and HGTV. It has been MONTHS that I have even been able to turn on the television during the day! Spencer is doing MUCH better today. He is not so lifeless. He has been talking and walking and has a little color back in his cheeks. This chemo roller coaster is just that! Ups and downs and anxiety, and even some barf! My recognized blessing today is that I get to spend time with my husband watching our shows and cuddling and enjoying eachother's company. I did find out today that an old roommate of mine has lymphoma. I don't know any more than that. I contacted her through texting and am hoping to catch up with her soon. She just recently got married. If you all have any extra room in your prayers please say one for Erin.

Blessings

At church on Sunday, in Relief Society (our Women's Sunday School class) we were discussing recognizing blessings throughout trials. I was amazed at all of the wonderful woman who were thankful for their lives and continued to say they don't have many trials in there lives. One of the women who mentioned this has had a husband, daughter and son die of illness and tragic accidents. Her life is no cake walk, yet she was verbally thanking God for her life and her blessings. I shared my feelings about my extreme faith. There are so many with little or no faith. To me faith gives me hope. Why not have hope? If that can get us through those thunderstorms, then why not have faith? I am not leaving this open to discussion or opinion, this is just my statement, my faith, my hope. This is what gets me through my thunderstorm. The point of this blog is to share my thoughts about my blessings. Sometimes we get so caught up in the trial that we do not see the many blessings right in front of us. I am pretty good about noticing the blessings in my life but I have many days where the clouds overpower the sun. It is my goal, and I am admonishing you all to participate in this challenge with me. We all have trials. I have trials that you prefer to never have and you have trials I would never want. That said, we also all have blessings. My challenge to you and for myself is to consciously recognize one blessing a day. Tell your friend, your mom, write it down, thank God, anyway you do it I want you do see them. What I am going to do is blog one blessing everyday. Even if I am not able to blog that day, I will blog my blessing. If I seem to fall behind on this goal, please remind me. Today I have multiple blessings. Some of them are too personal to share. One a long time coming, and all I will say to that, is that I love my Dad and thankful for him in my life. There are two blessings that have made my day smile that I will share with you. First, Spencer has not spoken many words over the past five days because of his mucositis (mouth sores) but today he has said many things, and any day he tells me he loves me is a blessing. The second blessing is a funny one. Our neighbor knocked on the door around 9:30 this evening with a bag full of Tsunami sushi. Oh what a blessing. Sushi makes me happy. It was delicious! I urge you to be aware of the blessings and goodness around you. Embrace the wonders of friendship and family and verbalize your gratitude. I am thankful for all of the people in my life who have shaped and molded me to be the mother, wife, and friend that I am. I am truly a blessed woman. (P.S. I LOST MY CAMERA CORD! I PROMISE I WILL FIND IT TOMORROW AND POST SOME PICTURES!)

Thankful

So right after I wrote the last blog I felt I needed to do a "thankful" blog. We have received many blessings throughout this trial. Many that are too personal to share and many that are obvious. I have met countless numbers of people who have touched our lives and I have met a few people who are now counted as lifetime friends. It is amazing how many good people are out there. It is hard sometimes, especially when watching the news, to understand that good people still exist. I am here to testify that they do, indeed, exist, and that a good number of them have blessed my life personally. Friends, family, strangers, acquaintances, nurses, doctors, techs, etc, etc, have come to our aid. Food, gifts, money, love, conversation, company, housework, prayers, fasting and countless other acts of kindness have helped our family through these last three months. It makes me sick to think of the 9 more we have to go but it IS possible with all of you wonderful people. My spirits may be low and my mind exhausted but I can rest easy knowing that I am being taken care of. I love you all and am so thankful to all of you individually for restoring my faith in mankind.
Nate has a good friend in Idaho who does these funny, and clever "freestyle fridays" on Facebook. He starts a rap going on a certain subject and others follow suit. He has gotten pretty popular and now does videos of his lyrics and he did one for Spence. I hope you all enjoy! Thanks Jacobs!

Today

Spencer is still in the hospital. Nate has been with him for the weekend. He has pretty has no immune system. His ANC is almost at zero. His platelets dropped from 78 to 29 but a platelet transfusion still is not necessary until they are dropped into the "teen" or he is bleeding. His hematocrit dropped from 29% to 19% so he had another blood transfusion. He has been throwing up and feeling miserable. I think he has been pretty drugged so he may not remember this trip. He was supposed to be able to go home tomorrow if he was fever free but I don't know if that is going to happen. He is supposed to get more chemo on Wednesday but I do not think his body will be ready for treatment by then, and if it is, it will be crappy to have to be there all week. I guess I should just embrace my suitcase, and hospital living but it is just so hard to be away from my babies. I feel like I am being pulled in two different directions. I feel like I need to be with Spencer and then I feel like I have been away from Gavs and Belle too long. I just wish that I could get used to hospital life but it is so tiring. So exhausting. They take such good care of my little boy, and to that I am more than grateful, I just wish our whole family could be together again. I miss my husband. I miss watching our shows and tucking the kids into bed. I miss making food for Spencer. I miss making dinner. I miss working at the hospital. The kids and I had so many fun plans for the summer that we have to postpone for next year. One treatment plan at a time.

Nostalgia

I am tired. I think we are all just so tired. It is amazing what anxiety can do to a body. Wrinkles, gray hair, fatigue. I had an interesting experience today. I was urging a friend whose family is sick and whose daughter, too, is neutropenic, to check her daughters temp. often. She teased me and called me "mom" and then I had this "thought" to check Spencer's temp. I did and it was 100.4. It is supposed to be under 100.3 and anything over that and up to 101 i am supposed to watch for a couple of hours, if it doesn't drop then we are supposed to get him admitted. Most of us have white blood cells that fight infection. We do not always get fevers because these lovely neutrophils come to the rescue and fight the invaders before they do any damage. Well, since Spencer has very little neutrophils, there is no rescuing and the fevers start to fight off these foreigners. His temperature teetered between 100.2 and 100.8 for the next couple of hours so I decided to call the Oncologist and she gave us the go ahead to come in. Thank you Ally for inspiring me to check on his temperature. When we got to the hospital so many other things hit me. I went to admitting and we got directed to the Emergency Department. The last time we were in the Emergency Department was on February 1st. The day of his first CT scan, the first day I heard the word Rhabdomyosarcoma, the first day of a very long year. The same nurse practitioner that told us he has a tumor, helped us tonight. It was all so weird. So many weird feelings coming back. He has had a pretty significant drop in weight loss and I really hoping that we can get that back up with his tube feedings. It is just really tiring that there are no time outs or redo's. There is no time for naps or revitalization. There is one mode, and no off switch. So if being back in the ER was not weird enough our regular ICS unit was full and we got put onto an overflow unit on the surgical unit. This was the first unit we ever stayed in here at Primary. It has just been a weird night. His fevers are low but they are there. I have had so many flashbacks to the "old days" as we have spent our first night on this overflow unit (I am continuing with this blog this morning from last night). I remember when he first had his biopsy done and was supposed to only be there overnight and ended up staying three nights and I was so tired. Three nights was such a long time for us to be there. Ha! I now love our three night stays! It is funny how perspectives change! Three days compared to five or ten days are a piece of cake. I feel vulnerable and out of place on this unit. We have become so comfortable on our ICS unit but everyone here is so nice and I was just informed that we will be moved upstairs back to our "safe haven". Because he is severely neutropenic from his last chemo treatment, ANC is 0.1 (100, 1.5 (1500) is the high of netropenia, he cannot leave until he has been without fever and infection for 24-48 hours. I am sorry about not having pictures again. I left my camera cords at home and have no way to upload them at this time. Nate is going to spend the weekend here with him. As I was walking out of the cafeteria and as I go onto the elevators I wonder how many times I have walked down these halls? There seem to be so many times in such a short period of time and we have so much more time ahead of us. We have completed about 1/5th of our treatments. I am trying so hard to look one treatment session at a time but it is so tempting to look far into the future when all of this will be done. I need to take a deep breath and stick with the plan! Last night was just so weird with all of the not so long ago memories of the "beginning". I thought Nostalgia was supposed to be happy.

The LAST DAYS of Radiation!

Ronnie and Colette were our favorites at radiation. Ronnie is the rad tech and Colette, the nurse. Ronnie was so nice to Spencer every single day. He always was so caring and sympathetic to us.

Spencer did his radiation at IMC at the Huntsman Cancer Center they have there, unless he was in the hospital and then he would go to LDS hospital. Well, his last day of radiation was planned for the Thursday he would be in the hospital and our IMC people were sad to miss his last day so they let him celebrate on Wednesday as well. He got to ring the bell, he got an Hawaiin lei, and a certificate, at both facilities! We really celebrated it up!




This is his real last day at LDS hospital. This picture is with Kristen who is the chief of radiation oncology. We have seen her at both hospitals and really love her. She is the sweetest. Spencer would always ask if we could stop and say hi to her on our way out. We got a picture with her and his mask, that we now have at home! Any suggestions in what we should do with it?
Celebrating at LDS hospital. He has to wear a mask outside of the ICS unit when he is neutropenic.

When we got back to our hospital room he took all of the sticker markers off of his mask and put them on his face. Silly boy. I love this picture of him, I think he looks so cute.

Full Throttle

I apologize for not having as many pictures as I usually do. It is just disheartening to take pics of him when he is having blah days and not feeling well. He threw up a couple of times last night and once this morning. He has not been on his feeds for a couple of days which makes me nervous, but his poor tummy needs a few days to rest and settle. I am hoping to start back up today. He is definitely a fighter. Only minutes after I cleaned up his vomit and gave him his meds he was up and at em! He wanted to go downstairs and watch a movie, but the Ativan makes him loopy so I want him to stay put for a bit. He is a funny guy. Dr. Afify, was the attending who discharged Spencer yesterday and she was the same doc who admitted him when he was dehydrated a few weeks ago. She told me that she was so amazed at his strength, and in her thick accent said "I think his strength comes from inside, his spirit and his mind". Oh, if she only knew how strong that spirit inside of him is. I just thought it incredible, that a doctor, a scientist, could recognize that fighting passion from within. I owe it all to the faith and prayers of all of you and the tender mercies of the Lord. These things are nothing short of miracles and I wanted all to recognize that. I have heard stories from other moms and friends who have had these chemoes and had a difficult time with recovery. Spence is hard core! I am now really starting to see the fighter that I have desperately been praying for! This morning Dylan, our home health nurse came to give Spence his dose of Nupogen. It helps stimulate the growth of white blood cells in the bone marrow to increase his immune system after chemoes that knock them out. Usually you have to have the injections for multiple days while they increase but our insurance approved the new "one time only" dose. Of course he had his anxieties and Dylan was really good to wait until he was ready. He cried for a few seconds and then he was fine. Dylan drives a motorcycle and told Spence that he could come out and see it if he would like. It was a cool red and chrome Harley Davidson with a cool flame feature in the back. Spencer thought it was pretty cool and then Dylan let him start and throttle the bike. It was a fun little adventure for the day! Thanks Dylan! My cousin Hillary is coming tonight to stay with us for the week so we are straightening up the house and getting ready for a fun filled week!

Endure

I am sorry to write solemn posts more often than not, but sadness takes over more often than not, these days. As we end our five day chemo treatment I am so thankful for the miracle wrought on by prayers and faith. I was expecting a bad week, nausea, diarrhea, vomiting, but none of these things occurred. I sit and watch my sweet little boy in all his baldness, in all his paleness fight the war of his life, quite literally. I wonder why he has been chosen to be this warrior, and what he may have to endure. Please endure. I have always wanted to know. I need to know things before they happen, how things work, what people are thinking, how things will end so that I have no surprises. I need these things. I need them in all of their truthfulness and rottenness. So many days I just cry, begging to know the answers, begging to know the outcome of all of this. A good friend reminded me, once again, that the journey makes the man. We develop character and hope and love and life changes because of our journey. We all make them. Some of us climb steeper hills than others but we all make them. I was given a wonderful piece of advice today by a kind stranger sharing her strength after losing a son from drugs. As I made known my anxieties of needing answers to the ending she told me to "try not to doubt your little boy's recovery. Don't waste your energy on something that may never happen". I think this is the most simply terrifying, yet truthful admonition that I have received thus far. Instead of fearing a dread outcome I need to appreciate every single moment with my son, with my family, with those who love me. I want every moment to be a cherished one with memories of happiness and love and not filled with fear and anxiety. In these two and a half months I have been learning the sheer importance of ONLY the important things. With them, I can endure anything, any outcome. I will have sad days. I will having doubting days. I will have angry, sick and miserable days, but today I will endure. Today I will love and today I will be thankful, and today I will smile.

SWEET

Today I am going to do a little blog on complete happiness! My friend Megan, from high school, is about the cutest thing ever. I do not see her much anymore but I have always loved her. She is probably one of the "sweetest", most fun people I have had the pleasure to know. ANYWAY. Megan opened up a gourmet bakery a couple of years ago in Provo, The Sweet Tooth Fairy and has been featured on Rachael Ray and KSL. I do not get down to Provo much and have been so excited for the opening of her new Draper shop, which is 10 minutes away (said in a singing tone!). Belle and I decided to stop in for some cupcakes and now I have a brand new love, Toasted Coconut Cupcakes. I know some of you are think, "naa, not too much a fan of cake" well let me tell you, this is cake reinvented. Never have I tasted a more delightful frosting and a more deliciously moist cake! Wow! Isabelle decided to go with the Double Chocolate Fudge, and we took a Carrot Cupcake for the road (sooooo delicious as well)! I HIGHLY RECOMMEND trying this ADORABLE bake shop. The Cake bites are also a delectable delight! Thank you Megan for being a wonderfully wonderful person and baking a {very} mean cupcake!

Equality

I always say that I am not going to post for a day or so and I just cannot pull myself away. I am sitting here with two of my sleeping babies. But I want to be here with all of my babies. I did a stupid thing by watching the So You Think You Can Dance Melissa and Ade breast cancer dance. I would post a link of it, but I cannot find a good enough copy to give it the complete justice it deserves. I just wish I could know. I wish that I knew the outcome of our story. I wish that I could have my life back. I am so very thankful for all of the blessings we have received because of this trial, but I just want my life back. I miss taking him to school. I miss waiting for his cute little face to come out of class at the end of the day. It brightened my whole afternoon. I miss making after school snacks, and doing homework. I miss being together as a family. I miss worrying about the little mom things and not worrying about if he is going to make it through chemo, if his numbers are low, if people are staring at him, if he will eat at all that day. I just wish I knew that when I tell him it is going to be alright, that it really is. There will never be a way to give him this time back to be a normal kid, to have normal memories. I want to be able to give all of my babies equal attention, equal love, equal worries. I want everyone to be happy.

HIGHJACKED!

My husband highjacked my computer so that he could use his Xbox 360 Live at the hospital! I am going through blogging withdrawals. All my pics are on my laptop so I will get back to blogging tomorrow! Spence just finished his fourth of five doses of two different chemoes and is still doing really well! Keep him in your prayers!

Twelve Eighteen A.M.

How did we find ourselves here? This place, so familiar now, why are we here? How do we get out? I look over at my peacefully drugged induced sleepy boy and wonder what the poison is doing to his body, coursing through his veins. His little innocent veins, tainted with a life too old, too complicated for their naivety, their youth. Forcefully aging him as little league, soccer and piano lessons pass him by, waiting for a better time of life. Mocking him as they continue on without his participation. When is a "better time of life"? Will it ever come for you? You are stronger than anyone I know. You fight in the trenches, I will fight with you. I WILL fight with you.

Playing Catch Up

On Monday afternoon we decided to stop by the theatre to say hi to Melly who is a "manager" there. I had a delicious veggie quesadilla and Spence decided on a blue raspberry Icee.
The Primary Children's Medical Center coin donation thingy at Walmart. Spence said "hey mom, I am really just giving money back to myself." Love that kid!

We were planning on going to Spaghetti Factory for dinner the night before we were going to be admitted but we found out that his numbers were pretty low so we had to stay home. He was so disappointed, and all he really eats is Spaghetti, so wonderful daddy stopped by on his way home from work and got it "to go".
Making himself comfortable in our room, moments after we got there.
He has a funny face in this one, I think he was cold, poor skinny guy, no meat on his bones. He cuddled up with blankets and we watched Karate Kid.
Blood transfusion!
My Beautiful boy.
A nice cocktail of blood and a big bag of Starburst jelly beans. What could be better?
Chemo!

Awesome Utes curtains Grandma Suzi made for our room. It makes it feel so much more comfortable! He loves them! Thank you!

THE FUNDRAISER

Okay, this post have taken awhile to get to, 5 days shy of a month to be exact. I have to be honest and say that it took me a good two weeks to recooperate from the overwhelming service and love my friends provided to our family, and I just did not have the energy to blog ITS justice! This "event" did not just take place in one day. This {Saunie monstrosity} had been weeks in the making. It started off with a fun idea to do a 5K fundraiser for our family and turned out to be a benefit of professional heights. They had meetings and weeks of preparation and hard work. Paige, my dear, lovely Paige spent every waking, and I am sure sleeping hours, working on this project. I had to reprimand her in church one Sunday for working on it! These girls are my angels. Each one of them has worked so hard to provide so much love and support to our family, and put in countless numbers of hours for this fundraiser.I went to one of their meetings to get away and say hi to my girls but it was too overwhelming, this was a serious event! Anyway, as you know Spence got really sick earlier that week and was admitted into the hospital. That was a Monday and I had no concerns about making it to the fundraiser, we would for sure be out by Saturday. Well, you all know that Spencer did not make it to the fundraiser. That morning was a very emotional one for me. I actually got to spend the evening and night at home with my kids and Nate stayed over night, and then we switched in the morning. When I arrived at the hospital that morning we still were not sure if he was going to make it. I was pretty sure he wouldn't make it but was trying to be hopeful. He wanted to go so very badly. He decided to take a walk to show the Dr.'s how "well" he was feeling and ended up throwing up bright green bile right in front of them. Needless to say they denied his discharge. He cried and cried, and screamed and continuously yelled "I have to go, I have to be there, it's my party." Oh, let me tell you, it is hard enough to see your children disappointed but this poor boy had gone through so much already and all I wanted was for him to see all of the love people had for him. I knew that so many people were praying for him to be there and I knew that the Lord was listening and because he was not able to go I feel like he was being protected. His white blood counts had been super low and there were hundreds of people there, I was told even one thousand people there. My wonderful sister in law Chelsey volunteered to come sit with him that day while we went to the fundraiser. As I walked out of the room I could hear him yelling and screaming and crying, and the nurses were crying and it was all very emotional. I always think that I am okay sitting in the hospital room all day with him until I walk out into the fresh air and then I feel like I can breathe again, like I had really been holding my breath the whole time inside. I raced to the event, and since I had a moment to myself I screamed. I screamed as loud as I could, and I even hit the steering wheel. I cried louder than I had cried in a long time. I just wanted him to have one moment of happiness. The sun was shining and the day was beautiful so I took a deep breath and continued to drive. I was doing well until I was almost there and Spence called me crying asking me to come back. I knew he was being well taken care of by Aunt Chels and I needed to be at this fundraiser. I told him I would be back when it was over. I hung up and turned the corner to see hundreds of cars parked along the streets and in the parking lot. I saw friends as parking attendants, leading the mad traffic. I walked in and saw Nate and I just broke down. (Don't mind the double chin, so flattering, I know!) Cute little Jen from Fauset Photography was there to document the event for us (so wonderful) and captured this picture of me coming into the event. She didn't realize I was Spencer's mom and just thought it cute that someone was so emotional! I cannot even describe to you the amount of LOVE, like intense, love that hit me when I walked into the event. I was so overwhelmed by it, it was tangible.
There were stations set up everywhere with so many fun things. Head shaving, a bouncy house, a video game bus, cotton candy, popcorn, yummy DELICIOUS food donated by Flavors Catering, who is one of Nate's good friends. It was honestly the best pulled smoked meat I have ever eaten! Ever! There was a firetruck, police cars, helicopter, Wesley Matthews and Jazz Bear! It was seriously the coolest thing ever. There was face painting and carnival games, and Munchkin Music Radio. Seriously people, it was awesome. It took me awhile to get to the head shaving to watch Nate and Gavs because of so many wonderful people I stopped to talk to. Gavin did a great job in getting his head shaved, didn't even make a peep. Spencer's school teacher drew in a big crowd as well as he ditched his locks!So I was seriously amazed at all of the people there. We saw people we had not seen in years. We have such great friends. So, I thought I was amazed by all of the people outside, {chuckle}, I decided to go inside to the silent auction. Seriously, blown away. I should not have been surprised since Paige was in charge. Wow. So many more people inside. Here are just a few pictures of the crowd. I had to remind myself that this was not a church function, or a school function, all of these people were there for Spencer. Totally blew me away!
Not only were all of these things donated almost completely for Spencer, but Chili's and Olive Garden donated food for a break room for our volunteers. Seriously amazing. This day was hands down one of the most overwhelming (in a good way) day our family has ever experienced. It would not have happened if it weren't for my angel friends. I love you all so very much. You have blessed my life in COUNTLESS ways. I am forever grateful for you in my life and in Spencer's life! Although the day was pretty emotional for Spencer's the medications he was on (Ativan most specifically) he does not remember the trauma of not being able to go. He has no memory of any of that hospital stay which we will count as a tender mercy. I love you my girlies! I of course could not put all of the pictures from our photographers, Fauset Photograpy, and Brightsides Photography, so I am adding the links so that those who do not have a Facebook account are still able to see them! I am still collecting photos from family and friends and will include a link when I have them all. Channel 2 news was also there and we had a cool segment on the 10 o'clock news. As soon as we get that footage I will link it on the blog!

Brightsides Fundraiser Pictures

Fauset Fundraiser Pictures

Leave me a comment or email me if you are having trouble finding the link.

Eastie Beastie's Party

A few week ago I mentioned that Belle and I spent some time together at my nephew's party and Jumpin' Jacks. I also mentioned that I would eventually blog it, so here we are! Some of my fondest childhood memories are of my cousins. I was lucky enough to be close to almost all of my 21 cousins, and continue to be so. I am thankful that my kids have the same opportunity. Nate's siblings are some of my best friends and I love every minute we all get to spend with one another. Belle and Easton are closest in age (well not counting Mars, Cars, and Gavs all born within a year of eachother) and always have a good time together. Isabelle and Andrew had a grand old time bouncing eachother, it was hilarious! It was a fun time to get out with just Belle and enjoying the evening.

Chick-Fil-A

I do not have much to write about our Chick-Fil-A day, besides the fact that we have AMAZINGLY supportive friends and family and that the Chick-Fil-A staff is AWESOME! I am totally sold as a customer for life! It was a really fun afternoon and Spence even attempted to eat that day. He TRIED some chicken fingers, fries, rootbeer, lemonade, and a peach shake! We saw so many wonderful friends and made some new friends. Thank you all for a very successful, enjoyable afternoon!

Wishing

I usually collage my pictures to condense them and use less space. This blog I am not going to do that. Our Make A Wish was such a cool experience and wonderful, fabulous Jen of Fauset Photography, took such beautiful pictures that I am letting them stand alone so this will be a long blog of pictures! I hope you enjoy them.

We were all given tokens to throw into the wishing pond when we first arrived at the Make A Wish center. I thought that they were so beautiful that I am going to ask for one to make a necklace from it. I love this picture of him holding the token.


Beautiful handmade glass stars for the star raising ceremony when you have fulfilled your wish.
We walked in the doors and this cool glass sign was greeting us.

The Wishing Game. There is this beautiful table upstairs outside of the wishing room appropriately called the wishing table. We all sit around the table and write one wish we have for Spencer, while he writes down at least two wishes for his "Make A Wish." He only wanted to write down DISNEYWORLD but for medical reasons they needed him to put down a couple of different options. So his second wish is to become a Chef. The cute Make A Wish girls helped him figure out that wish. While we were sitting around the table the kids got little gifts. Belle got a cool "Make A Wish" Barbie and a princess wand. Gavs got a duckie and a ball and Spence got a shirt and hat, a watch and a football.




My beautiful baby boy. Gavs was sooo crazy this day. He must have felt the excitement in the air. Is he not just so beautiful!?

The Wishing Table.







I love this picture. He looks a little mischievous. After he writes down his wishes he puts it into a capsule that he will send to the Wishing Wizard in the cool Wishing Room.
Opening the door with a special key to the Wishing Room.

They asked us to each read our wishes {out loud} to Spencer, cruelty! They thought it would be good to start with me? Well I was bawling before I even opened my mouth. Nate, Belle and I all did "sentimental" wishes and I of course, am the only one blubbering away! After we gave him our wishes he got to follow the cool floor that lit up in different colors and walk around the waterfall feature in the room to the cone where he would deliver his wish to the Wishing Wizard.








After he made his wish we got to have ice cream sundaes! It was fun to talk to the wonderful Wisher Granters, Tom and Jonette and learn a little more about Disneyworld. Jen then took some more pictures of our family. It was a wonderful, emotional day, and I am so thankful to Jen for capturing these moments for our family.