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.