Revitalize

I am working on consistency. The last two hospital stays kicked my butt and we only have a few more chemo admits until we have a break for the summer. Our "break" consists of only clinic chemoes, which can be tiring, but no overnight stays, and that makes us happy! It will be a time of rejuvenation, revitalization, and re-energizing, of body, mind and spirit. We had a wonderful birthday weekend, which of course I am working on blogging. I REALLY need to SCRUB my poor house before I can do that. I wish summer was here year round. Lots of people L.O.V.E. the four seasons, um, I am a Southern California girl, born and raised, and I am perfectly with Spring and Summer year round. The sun, the warmth, it energizes me, it motivates me. I think I would be thin if it was sunny and warm all of the time. I want to run, I want to eat healthy, I want to play with my kids outside. I want to bike, swim, and ZUMBA! This new energy gives me hope for good things to come in our crazy life. I was working on losing weight after having a baby when Spencer was diagnosed and unfortunately I have already gained weight back. I was talking to a nurse last stay and she said lots of parents leave in the morning to go running. Why didn't I think of that? Probably because I don't like to leave Spencers side but she said "parents need to stay healthy to take care of these kids and if leaving them for an hour to go running is what they need to do then we understand." My valid excuse has been that I have no time. Things are going to change. I need to make some time to take care of myself so that I can continue to take care of my Spencer and my family without "hurting" myself physically and mentally. I have been thinking about starting Jillian's online program. Has anyone tried this? Thank you for letting me make a side note, an energized thought, to express the goals I have for myself. Writing them to you makes me accountable. I want to feel physically happy for Disney World next summer, and I want to live a healthy for my children. I am going to take the next few days to work on cleaning my home before our next hospital visit. I will do my best to continue to blog in between. I have a whole wonderful weekend of birthday bliss to blog!

Donde Esta....?

I lead a glamorous life. I shower and dress and get ready for the day. For a day, and for days of sitting in my chair in the corner as I count down the hours. Facebook, iPods, books, magazines, none take my mind and my eyes off of the ticking clock. Waiting to leave. Waiting for a year to pass. Waiting for a minute to pass. I dress for the few occasions I leave the room to go the bathroom, or grab a bite to eat. I count down to 7 p.m. so that I can get in my pajamas and pretend that we will go to bed soon. I sit and watch long movies. I am just about done with the Lord of the Rings trilogy, while I play the same game over and over on the iPod Touch trying to beat my score. Spencer is moaning. He moans in his sleep when he is on chemo. I think it is mainly from the anti-emetics, especially Ativan. I understand his moaning, although maybe in a different aspect. My soul moans. Some days I have this inner dilemma with my spirit and my mind. Fatigue, and sorrow try to run over my sun shiny soul, thus leaving me with apathy. I have so much passion in me, and it feels so weird to not feel at all somedays. It is better to have a moaning soul than an empty shell. Feeling anything is much better than not feeling at all. My sister sends me pictures of the cute things Gavin does and it makes me jealous. Feeling something. Why don't I get to be with him? Where is he? Where is Belle? Where is "me"?

Happy Birthday Baby!

I do not have the emotional energy to write an heartfelt blog today. I might after this weekend. I am, however, SO VERY THANKFUL, to have celebrate Spencer's birthday. This birthday seems just a little bit sweeter. This bottom collage is a picture from the past seven years of Spencer's life, one for each age. We are so thankful to be able to add one more, and pray for many more years. I love you sweet baby boy. Eight years ago, you changed my life forever, and made me a mom.

Chemo Schmemo

This week has been pretty good. We have started this out as a "routine" chemo treatment. He usually does really well during his chemo stays. Today is day three out of five. They have been advancing his chemo by two hours everyday so that we can leave here before his birthday. Everyday chemoes are given every 24 hours. Advancing chemo by two hours every day means that he will get it at hour 22 the following day, and then hour 20 the next, and so on for the next four times. He tolerated it well yesterday but today he is beginning to unravel. His head hurts, and he just threw up, which he does not regularly do during chemo treatments. He usually begins to throw up after chemo after we have been home for a couple of days. His pupils are small, and even, and he looks pale. I am hoping that this will go away. Except for the pupil part. I like it when they are even. Maybe he is just having an off day. I want him to be able to enjoy his birthday, if only to feel healthy. Our room is freezing today and he is kicking his blankets and sheets off. His head is clammy and he says he feels hot. His temperature is normal. He tries to do without Ativan as much as he can but today he asked for a half dose. I hope this will help him sleep. He just had a dose of Oxycodone, and thankfully his headache has relinquished. I am counting down the days to our last set of in patient chemoes before our two month break from them . It will help our family to refocus, re-energize, and regain composure until we start again. I was walking down the halls to the University of Utah cafeteria (they have Indian and Thai food there now and again) and I saw "normal" looking kids sitting in waiting rooms of doctor's offices. Normal doctor's offices. I remember dreading sitting in the waiting room at the pediatrician's office with three kids waiting for it to be our turn. Trying to calm Belle and Gavs down, of course Spencer was always being obedient. What I would give for crappy normal moments, just to have them be normal. Just to have life in the right order. This is our right order. Life has never been normal. It makes the blessings brighter, I suppose. It makes me thankful for every little moment, especially the happy ones.

Team Spencer L.A. Strikes Again!

Our beautiful friends, the Stevens, have done it again. They were part of American Cancer Society's Relay For Life in their division. They donned their Super Spence shirts and made illuminating bags in his name as they supported us and others who are battling cancer, or who have lost their fight. We are so thankful to them and all of the love we feel from them hundreds of miles away.

Diamond Encrusted (Blingalicious) Friends

I got a text today while I was at the dentist with Belle, from one of my "bestest" friends in the whole entire world that said "What if I want to be a gold AND silver friend?" We came to the consensus that she and Sara are my diamond encrusted friends, blingalicious if you may. I am actually trying to get through this post without bawling my eyes out. These woman are the strongest I know. We have been through many things together in the past 16 years. Together we have seen heartache, adolescence, first loves, breakups, self discovery, rebirths, out of state moves, dances, college, marriage, children, death, sickness, happiness, toilet papering, egging ex-boyfriends cars, thousand of inside jokes, road trips, etc, etc. These are women who know me better than I know my own self. These are woman who "just know" when to call or text or email. We have carried each other burdens, experienced pure joy in each others happiness. We have mourned with one another, rejoiced together, put toothpaste on our pimples together, and experienced intense spirituality with one another. These woman are above all other woman. No matter how far we are in distance our hearts and souls are forever connected and I feel so incredibly lucky to have them in my life. For more than half of my life now! They have earned every diamond encrusted in our friendship. I love them beyond explanation. I love you my Sara and Kerilyniepooh!

One is Silver and the Other Gold?

Today my blessing is "new friends". Most of you know to a small extent how very blessed I am with old friends. Wonderful, loyal, perfect "old friends". In this journey of ours we have been abundantly blessed with new friends. Friend who may quite possibly be life long. Friends who sincerely care and pray for our family. Friends who console and support and lift spirits. Unlike the old saying "Make new friends and keep the old, one is silver and the other gold", you are all gold my wonderful friends. Thank you for being a part of our lives.

Aging

I know. I know. This is the most sporadic my blogging has ever been. Let me tell ya, I am totally still trying to recover from our 8 day hospital stay last week. That last visit killed me! I also misplaced my usb cord for my digital camera, and have not had the energy to search for it. I have some pictures from this last weekend that I really do need to post. I will try to get on that this week! I was looking through some of our pictures and I couldn't believe how much Spencer has aged. I look at myself in the mirror and see dark circles, gray hairs, and even some wrinkles, and I am not physically getting chemo. The picture on the beach is in January, a month before he was diagnosed. It is weird for me to look at this picture because the tumor was there at that point. In only a handful of months my little boy has aged so much, not only physically, but emotionally and spiritually as well!


These pictures are of our last stay. This first one is Spence waiting to get his line taken out.
After surgery, getting his line replaced.
Last week we had Starla. She is awesome. We had some kind of crazy things happen this visit and she made us feel comfortable and safe, plus she is a sister Southern California girl, so how can we not love her! She left us a cute little note when we were in surgery and her shift ended. We are lucky to be on such a great unit with so many great nurses, doctors, techs, etc, etc.

Lucky

When I was 13 years old I had memorized the "balcony" scene from Romeo and Juliet. By the time I was 18 I finished the complete works of Shakespeare. I am a romantic. I love the idea of soul mates and have believed in it my whole life. I believe in God. I believe in eternity. I believe in true love. I am going to sound scattered and write a handful of thoughts down, I promise I will connect them. Today I had the opportunity to see two movies. I took the kids to see Shrek, and was blessed to have an evening with wonderful friends and enjoyed Letters to Juliet. Shrek makes a deal with Rumpelstiltskin to give one day of his life up so that he can be a normal ogre for just one day. He is burnt out by being a husband, a dad, a friend and just longs for one day to be his old self again. Rumpelstiltskin tricks him into giving up the day he was born, thus erasing his existence forever, after his one day of "ogreness". The only way to break this curse is the partake in true love's kiss. He finds Fiona, as a feisty ogre warrior, and needs to convince her that she loves him. As the day is ending and he begins to disappear she realizes she loves him and tells him she is sorry. He looks at her and says, "don't be sorry, I got to fall in love with you all over again." In Letters to Juliet an old woman goes on the journey to find her true love, and succeeds, fifty years later. I have many friends going through their own trials. These particular friends are struggling through messy divorces due to disloyal husbands. Every single one of them has said to me "it is nothing like what you are going through though." I beg to differ. I believe in God. I believe in eternity. I believe in true love. I have a son who is ill. There is a possible outcome that his life on earth may end prematurely. I believe that I will be reunited with him again, if that be the case. I have a husband who believes in fidelity. He is loyal, he is honest, he is a hard worker. He carries me when I cannot walk and he supports me in all that I do. I am a lucky woman. I feel lucky that I do not have to search for my soul mate in fifty years. I feel lucky that I get to love, fight with, cook for, live for a husband who sticks by my side, even when I am difficult, even when I am crying, even when I am chubby. I am lucky. I have a husband who feels like his sole purpose in life is to support his family. I am lucky that I have a husband who apologizes for his mistakes. I am lucky that I have a husband who is loveable and personable, and has many friends. I was inspired by the message in Shrek. I feel lucky that I have a friendly marriage, that it is not too late to show my husband love. I am lucky that through this experience with Spencer, I have watched my Natey grow into an even more wonderful man. I am lucky that I have been able to fall in love with him all over again. I am lucky that I can be with him for eternity.

Let me not to the marriage of true minds
Admit impediments. Love is not love
Which alters when it alteration finds,
Or bends with the remover to remove:
O no! it is an ever-fixed mark
That looks on tempests and is never shaken;
It is the star to every wandering bark,
Whose Worth's unknown, although his height be taken.
Love's not Time's fool, though rosy lips and cheeks
Within his bending sickle's compass come;
Love alters not with his brief hours and weeks,
But bears it out even to the edge of doom:
If this be error and upon me proved, I never writ, nor no man ever loved.

–William Shakespeare (Sonnet 116)

Home

Today was filled with glimpses of an old life, a chaotic bliss. Scrubbing my house, crying babies, wiping bums, making lunch and dinner. Sigh. My real life. My happiness. At the end of the afternoon, as the evening was setting in and as I was stirring the sauce to my stroganoff, I was listening to Home by Michael Buble and I had the feeling of missing "home". "May be surrounded by A million people I Still feel all alone I just wanna go home Oh, I miss you, you know" This is how I feel currently. It almost doesn't matter how many people we are surrounded by at the moment I just miss my babies. I miss my husband. I miss homework, and being a busy room parent. I want to go home. It has been a Michael Buble kind of day for me. I woke up with Feeling Good and it helped me approach the day with a positive attitude. Spence slept until 1130 and felt great and had a pretty good day. He had a moment of nausea, fell asleep and woke up as his funny, sarcastic self! It makes me happy to have these kind of days. We opened the curtains, the windows and let the sunshine and fresh air into our lives. Something we have been missing. I cannot even describe how much I love this kid, all of them. It almost hurts to think about the intensity. I had a visit from some of my most wonderful friends, one delivering dinner the other with a big fat diet Dr. Pepper. I am the luckiest girl alive, to have these other girls in my life. We then had some friends come over and we enjoyed an evening with conversation and Chuck, oh and pumpkin chocolate chip cookies. Nate and Spencer are now having boy time, staying up late and playing video games. It was a most wonderfully normal day!

Festivities

On Sunday, May 16 my funny guy Gavs turned ONE! It seriously seems like yesterday that I went into labor with the big guy. He decided to come two weeks early (yay for me!), he was due on Spencer's birthday, and ended up being 8 lbs 1 oz. Pretty big guy for being early. He has added so much sunshine to our lives especially during this trying year. Friday we decided to do a "small" party at my dad's house. We are learning to work around our hospital visits. If I anticipate getting out on a certain day and it doesn't happen then it makes the visit worse. I decided that not rescheduling appointments and events is just better. Nate stays with Spence while I prepare things. Sweet Brielle stayed with Spencer on Friday evening so that Nate could be at Gavin's party as well. Spence had been in low spirits the whole week until Brielle came to stay with him. He started talking regularly and I heard he was even laughing! Nate took a half day at work and came around lunch time, which was the same exact time Spencer was going down to take his line out, so that I could prepare for the party. I really didn't have to do much because my wonderful family took over. Logan, my bro, made FANTASTIC pizzas. He is famous for his pizzas! My mom in law and sis in law made salads, my dad, homemade ice cream, pina colada and Oreo, all I had to do was throw the garlic bread in the oven and make the cakes. I just bought already made cakes from Harmon's and then cut and filled them. I filled them with fresh strawberries, blueberries and blackberries and mixed them in a boysenberry jam. It was pretty good. I cut it into the shape of a big, funny monster. Gavs dug into his cake and loved every minute. He continued to put his face into it, silly guy. I ordered Gavin's cute invites from an Etsy store that designs digital invites. I wanted to do a cute monster theme and these were perfect!

















Nate took the weekend shift at the hospital, and Spence was really looking forward to his time with his dad. Belle has been struggling with me being gone so I decided to make a fun weekend of everything. It was a beautiful, sunny day and the sky was gorgeous. Belle and I got our nails done, celebrated Gavs birthday by going to In-N-Out, Sweet Tooth Fairy, a church activity, and then went to see Babies at the theatre. We had a really enjoyable weekend together. I miss my kids.

Pangs

Why do we do this to ourselves? Why do we willingly put ourselves in these situations? We choose to make our hearts and our souls vulnerable the moment we decide to become mothers. "It is better to have loved and lost than to have never loved at all." Is this debatable? No, I do not think it is. As I left my scared, crying Spencer to sit in the waiting room, as he was wheeled into surgery to have his line replaced, I passed parents with babies, kissing them, smiling at them as they proceed for surgery, one was coming out of recovery. What makes us so insane that we purposely decide to give our whole being for these perfect angels? Did we ever even imagine in our wildest dreams that by having a child we would feel so much, that we would discover feelings we never had. And then when something happens to that child we find that there is even more to feel, feelings so raw that they literally hurt. I feel this way every time I send my baby to surgery, every time he starts chemo, every time he throws up, or cries and even laughs, because laughs are so priceless these days. It is indeed better to have loved and lost then to never have experienced the love of being a mother. Every pain, every smile, every tear is worth every single moment I get with these flawless babies." Babies are bits of stardust blown from the hand of God. Lucky is the woman who have felt the pangs of birth for she has touched a star" Oh how lucky I am to have birthed these beautiful stars. I am thankful every day to God to be a mother, to feel all kinds of emotions. To feel the pangs of birth and life and death as I get to borrow these special spirits. Spence will be fine. He will be done shortly. I am lucky to feel peace these days. He will have on small dose of chemo tomorrow and then we will be able to go home! Home!

Control

We have had kind of a crazy stay here this go around. Spencer's bacterial and yeast infection have not gone away and "the team" along with advice from the Infectious Disease team has determined that the only way to get rid of it is to replace his central line. The bacteria and yeast have formed their own colonies on his line and have secreted their protein barriers around themselves protecting them from the antibiotics and anti fungals. Today he will have the line removed. We will need to wait a few days for the infection to clear and then they can replace it. He is pretty bummed about it all, but he is a strong kid, he will be okay. His ANC is low so there is a NO VISITOR policy right now unless otherwise notified. The unit will not even let anyone into his room without our permission. This has been kind of a depressing visit for him. Hopefully we will be out of here soon and he can start to feel back to normal and get back on track for some home tutoring academics. Tonight is Gavin's family birthday party and it is just so sad that we are not all together. For all those who know me well, know that I tend to go overboard with parties and dinners. This year I just feel so blah, and I don't want to jip Gavin out of a first birthday. I think I feel like I am jipping myself out of his first birthday, what does he know, he's a baby. It is just a different kind of year for us, and it is slowing creeping along. Nate will be taking the weekend shift and even found a substitute to teach his church class on Sunday so that I can have as much time with the kids as possible. He is wonderful. Spencer will enjoy the time with his dad this weekend. I am learning to handle this new schedule. I am learning not to feel hurried about getting out of here. I am learning not to cancel any activities we have planned and just work around them. This is our life now. It is different and hectic but we are learning to make it work for us. It has made this hospital stay more controllable. I am going to take the weekend off of blogging, and enjoy my kids. I am even leaving my computer here at the hospital so that I won't even have the temptations!

Lifted Up

Spence had been feeling kind of down all day yesterday and really needed some cheering up. Isabelle, Daddy and Gavin came to the hospital in the evening to help lift his spirits. Unfortunately, Gavin is not allowed on the until but I had a fun time with him out in the lobby, I think I may have needed to see him and the others almost as much as Spencer. I love the picture of Belle and Spence. It make my heart melt. Before all of this happened they were best friends. Of course, there was always some sibling rivalry going on but Isabelle just adored him and wanted to do all of the things he did. They would play and read and laugh together. I miss it so much. Isabelle looks truly happy in these pictures. Shortly after they arrived. Grandma Suzi, Grandpa OK, Logan and Raynee showed up! And then Grandma Cindy! What a night! It did so much good for my little guy. I didn't get any pictures but my FABULOUS friends Saunie and Katie showed up around 10 that evening for CHEESECAKE and conversation in the cafeteria. Grandma Cindy stayed with Spence while I had a little moment and laughed and talked with my friends. It was an enjoyable evening. It was definitely the lift we needed.

In my agony last night, I forgot to reflect on my blessings. FRIENDS. I am so blessed with so many friends who are still always here for me! My friends are inspired. Yesterday, when I began recognizing my heavy load, the Lord began lifting my burdens through my friends. Two cute hospital volunteers walked in with two ballons, Starburst, and a magazine. The note said "Love Allyson". My cute friend in California called the hospital and had these fun things sent to our room "just because". Oh the power of friendship and the true inspiration they carry for us. Then today, after posting on Facebook that I was craving chips and salsa, another friend from church dropped by with a couple of bags of chips and a jar of salsa. Seriously? How did I get so lucky to have such wonderful friends. Another friend of mine stopped by for dinner tonight, Cafe Rio and Dr. Pepper. One of my BFF's texted me today, she lives in Texas and just had a baby, and wanted to let me know how much she loves me. These are wonderful things for a broken spirit. My other blessing is my husband. My sweet, loyal wonderful husband. He came today with a bunch of Mother's Day roses (which, unfortunately, are not allowed on ICS) for me. He does a wonderful job being a single parent as Spence and I spend many days away, at the hospital (I may need to hire a hairdresser for Belle though)! I love the picture below of Nate, Spence and the Jazz Bear Nate brought him. I also included a picture of our view. Although the roof is a lot of the view, the greenery, mountains and rainy skies provide me with much solace and gratitude, you may need to click on the picture to really enjoy its beauty. We had a few challenges today, but thanks to friends, a great husband and Cafe Rio we made it through!

Breakdown: Part 100

I was not intending on writing tonight, but I am having a moment. I feel like screaming tonight. I feel like grabbing a vase or anything glass and throwing it against the wall. I want to kick and I want to punch and I appreciate you all listening while I rant. Spence is pretty sick. The infection he has makes him have these mini tremors from his fever. He shakes so hard and it takes awhile for it to stop. He breaks out in a rash and pretty much his eyes roll back into his head. There are moments in every mother's life that she has a "freak out" over her child's health. These moments are the worst for me. I feel like "is this it?" As I am stroking his sweet bald head my heart races and I think "is this going to be the last time I do this?" His whole short childhood goes racing through my mind as I thank God for every moment I have had with him and silently pray and beg for many more moments. "Please do not let this be the last one, please." I think how will I deal with this if we ever come down to it? It seems like only yesterday that I watched and felt his sweet spirit enter into this world PLEASE do not make me watch it leave. To all of the mother's who have lost a child, my soul cries for you. I do not know how much more suffering I can watch this innocent, little boy endure. ARRRGH! I wish I could scream at the top of my lungs! I wish that I could tell Isabelle and Gavin that I will be home, that I don't have to be gone days at a time. I wish that I could tell Spencer that it will be alright, but I cannot even tell myself that. What happened to my healthy, rambunctious seven year old who always had a new story to tell. Why him? What is in store for this strong spirit? How can I find the same strength? Don't leave me.

A Full Weekend!

This last weekend was enjoyable for us. Spence was kind of sick, aftermath from treacherous chemo, but his spirits were high. On Saturday Belle got to go golfing with Papa. She has been wanting to take up the sport and so now is the time. She had a fun time. When she got back we had plans to go to our church "carnival". Nate was at Iron Man 2 with the boys so I asked my sister to come and stay with Spence while Belle and I had some time, with Gavs in tow of course. She had a fun time playing beanbag toss and golf, getting her face painted and some various other games. Gavin got to hang out with his BFF Brockster! We went home and made BLT's for dinner. It was what Spence wanted to make me for Mother's Day. He was too sick to help make it but I thought that his idea of planning dinner for me was so cute. Sunday was busy with church and making dinner for my stepmom. I already posted what happened shortly after with Spence and taking him to the Emergency Department. After he had fluids his temp dropped and he started to feel better. His ANC was 2.4, which is good, and they decided to let him go home. My dad and stepmom just felt like the other two kids should stay the night over at their place, which was good inspiration on their part because at 6 this morning we got a phone call saying that his blood cultures had come back positive for a bacterial infection. Blah. They asked us to be in ICS around 7:30-8:00 a.m. I jumped out of bed and began getting ready. We rushed off to the hospital and here we are now. He has been throwing up, spiked a fever of 39.0 c (102.2 f) and had a small allergic reaction to the Gentamicin antibiotic. It has been a crappy day to say the least and it is not even noon. His heart rate and his blood pressure are high so he has a fluid bolus running at gravity. He just received his Ben/Phen and even Ativan. We only do Ativan if he if feeling really bad. Luckily the Ativan conks him out and makes him forget everything so I will count that as a blessing. Please pray for a fast recovery, and for them to find a cause and a fitting antibiotic for this infection!Not too excited about being here, AGAIN.

Gavs tried his first corn on the cob. He pretty much chucked it across the room, but that is what he does with everything nowadays.
Just a good natured kid!
Face painting, golf, bean bag toss! Day of fun!


Gavs and Brockster BFF's!

Happy Mother's Day To Me....

Right as we were sitting down for dinner at my dad's house Spence starts screaming, barfing and shaking uncontrollably. We left all of his meds and thermometer at home because he was doing well, so without taking a bite of dinner, Nate ran home to grab everything. I sat on the couch with him and he was shaking and just rubbed his head. Nate rushed back and his temp was 101.8! With a temp like that we are just supposed to go to the Emergency Department at PCMC. Nate took him there, my dad took me home so that I can wash clothes and pack for who knows how long. That is what I am doing now. I will relieve Nate from the hospital and he will pick the kids up from my dad's! I will write more when I get to the hospital. I wanted to do a "real" mothers day blog!

I love my mom because...

Primary Children's Medical Center put together a short little video on moms and why we love them and they asked Spencer to be one of the participants. He is at about 1:30.

Super Spence vs. Cancer head shaving fundraiser

Falling Slowly

I feel like we have settled in to a new normal for us. There is less "every moment" anxiety. We have days and even a week at a time without scheduled something or others. Sometimes I feel back to normal, I take a good deep breath and take a moment and then BAM I feel like I have been hit in the stomach and I remember that my son has cancer. Cancer. Chemo. What in the hell? It's like time is moving in this whirlwind and I am brought back to the present sadness. Sometimes it is a picture, pre-diagnosis, a memory, a song that has this enormous effect on me. I will see a picture of my Spence with his hair and a little more meat on his bones and think, yes this is normal, this is who we are, maybe it was a dream. I turn my head and am awakened from this daydream by a sweet, skinny, fragile, bald boy. I do not curse the heavens, I do not place any blame, but I feel sad. Sad to watch him fight so hard. Sad to hear others who have lost their loved ones to this icky demon. Sad to leave my kids during chemo. Sad to miss my husband. Just plain sad. My guy is fighting so incredibly hard. The head of Oncology here is the chemo doc on the floor this week. He came to see Spence today, like he does every day and he said to me in his sweet voice, "He is incredible how he does this, he really is". He was amazed at how well his body has been reacting to all of his chemo treatments. He rarely throws up, he rarely complains. When the docs come in he is sitting there playing video games as happy as can be. He tells jokes, and he shares his knowledge of whatever his interests are at that minute. He is made of steel. He is happy. I was thinking today of the many blessings in my life that have been a result of this cancer. Too many to count. Little things that I had been praying for in my life. In fact all of the things that just weren't falling into place in my life, I believe just about every one of them has found their position now and have beg more into who I really am. What a blessing, a miracle really. Today my blessing is Jen. Jen is one of our favorite nurses. We got her again, today. She made our "third floor" stay a more enjoyable, comfortable place to be! Another blessing today is Nate. He came to visit us on his lunch break and I think it made both Spence and I pretty happy. Somedays smiling is a hard thing to do, but why not when we are so blessed?!

Amazement

I remember bringing Spencer home from the hospital when he was first born. I would lay on the couch while he slept in his car seat and I would watch him sleep all night. I did not want to miss one breath of this brand new amazement that was mine. (24 days short of) eight years later I feel the same way. I cannot take my eyes off of this miracle, this amazement of mine. He has proven to be so incredible in so many ways in the short eight years of his life. I do not want to miss one breath. Each one is a blessing.


We are lucky to be here to get such great care. My blessing today is chemo. I know that is so oxymoronical but every chemo done is one closer to the end of treatment. Every chemo done is just more weapon for the fight. I am sad because we are stuck on the third floor again, the ICS overflow, away from our comfort zone. The nurses are the same which makes things a little better. There is no parent laundry/kitchen room, no flat screen, and no XBox 360. Those things may seem a shallow reason to want to be on the true ICS unit but it means so much to a little boy who feels "stuck" here. His weight is up, thanks to our continuous feeds, and the nutritionist was impressed with our "Gatorade feeds" to keep him hydrated. He has had his Vincristine and is now getting the Cytoxan, two of which we have previously had. After the Cytoxan will be the Doxorubicin which is new for us. Chemo makes me nervous. As much as I am thankful for its "powers" I get really anxious before and after it is administered for the first time in a session. He is asleep now, due to his anti-emetics and will most likely be for the remainder of our stay here. I already miss his conversation. We had an enjoyable day talking and texting! I was watching a movie on my laptop while he was playing with his iPod Touch and I got a text that said, "I love you mommy". Oh how my heart melts for this kid. I am so lucky to be his mom. I am so lucky to have three beautiful children.

Fiesta

Yesterday my sis in law says "I think my iPod Touch is broken, it says that you haven't updated your blog since Thursday." LOL! I thought this very funny! No it's not broken, I just took some time to enjoy the weekend without opening my computer! Friday started off great! On Thursday we found out that Spencer's counts were very good! His ANC went from zero to 3.0 (3000) in just four days! Thank goodness for the Neulasta shot! Because his numbers were so good he decided that he wanted to attend the last hour of school on Friday. It was so great to have him at school. Belle and I stayed in the building and ate lunch but let him have his freedom. It was another moment of normalcy. It felt nice, for both of us. This was most definitely the blessing of the day!


Saunie watched Gavs while we were at the school, so we headed back her way. They were preparing some yummy delicious cajun food (her husband is from Louisiana) and so we stayed for dinner. Crawfish Etouffee, and the best fried shrimp ever! Spencer even attempted to try a shrimp. It didn't end up happening, but he put it on his tongue. His poor taste buds still aren't working correctly. The kids goofed around, I even had to tell Spence to settle down (yay!) and they watched a movie. Us girls watched a chick flick while the boys went out to watch the Jazzgame. It was a thoroughly enjoyable day.
The next morning I got my hair done at Total Betty by Marti (she is fabulous, best ever!) and ran some errands. I then started preparing the tamales for our family Cinco de Mayo party at Nate's parents house the next day. Spencer really wanted to celebrate Cinco de Mayo but he will be in patient that day so we decided to do it on Sunday. Tamales take a couple of days to prepare so I started on Saturday. I made rice and coconut flan as well. We had a great "fiesta" and enjoyed being with our family. Spence tried a bite of a taco, flan and chips and guacamole! The kids love being with their cousins. The weekend was so great. We haven't been able to enjoy it like this yet. I feel like we are starting to settle into our new norm. I know that their will be bumps in the road but this new norm is much better than the anxieties of a new diagnosis! Tomorrow we go in for a three day in patient. He will get Vincristine, Cytoxan, and Doxirubicin. We have done V and C but not D so keep him in your prayers! If you scroll down to the end I have included "Holly's Tamales" recipe!

Holly's Tamales (heehee)
The day before is when I prepare the meat. For the meat you will need:
6-8 lb pork roast
1 big bottle of any kind of Taco Sauce
1-2 big Anaheim chili's (you can use canned chilis but fresh is always better)
1 large orange (zest and fresh squeezed juice)
1 1/2- 2 bags of brown sugar
1 can of Coke or ...any non diet soda
Put the roast in a crock pot or roasting pan
Pour Coke and add all of the ingredients. I use the whole orange for the zest and only squeeze half of the orange juice while it is cooking. I put 1 bag of brown sugar in while it cooked the whole day and added the 1/2 when i put it in the fridge at night.
Cook on high for the day and put in the fridge overnight (dump more brown sugar before refrigerating) Next morning reheat meat. When heated shred into a separate bowl. Add a little bit of the sauce from the crockpot and add the second half of the orange to the meat in the bowl. mix around. It is now ready for the tamales.
Corn Husks need to be soaked in warm water for about 2 hrs. so prepare for that.
Now it is time to make the masa:
MASA:
2lbs Maseca Masa
2-3 c sugar
3 TBSP Cumin
3 TBSP Chili Powder
3 TBSP Garlic Powder (not salt)
1 TBSP Salt
Mix well and add:
4 C sweet white corn (i use the frozen kind)
2 C CORN OIL
8 C chicken broth
mix
The consistency is supposed to be like thick peanut butter but sometimes tamales get really dry. try adding a little more broth to make it more moist.
grab your corn husks from the water, shake them a little and lay on a towel. I do an assembly line about 8 at a time. Spread your masa onto the corn husks. here is a link to a site that has pictures and explains thoroughly how to construct, fold and steam the tamales! Enjoy! http://www.sonofthesouth.net/tamales/Tamales_Recipe_.htm