Endure to the End

I recently came in contact with a mom whose son also had rhabdo. Tonight she emailed me asking me a few questions about the differences in our sons diagnoses and I rambled on about some things. It hit me. Now that we are approaching the end things do not seem as bad, however, giving her the details of the "beginning" hit me pretty hard. I cannot even believe the things we have been through. It is just crazy to venture back and realize what Spencer has weathered, fought and battled. Nobody should ever have to go through these things. After I emailed her I went back to read the first few posts of mine. {DEEP BREATH OUT}. Blah. What a long and winding road. We are now at a place that I could not even begin to imagine eleven and a half months ago. I do not feel that I have anything eloquent to say tonight, but I am thankful that time is moving on and that memories fade. Even horrific ones. Spence and I were talking about some experiences we have had this past year and he did not remember a lot of things. Such a blessing. There were a lot of experiences that are better left in the past. One of my very favorite people, let alone, friends, Ally, is having some of these moments. Her sweet little four year old has been in the hospital the last few days with an undiagnosed colon infection. Let me tell you. There have been many, many nights that her words have comforted me and have kept me company as I sat up late in the hospital worrying about my baby boy. It is really hard for me now knowing exactly how she is feeling, to literally be able to close my eyes and think of specific nights I sat there, crying, as she gave me her sincere prayers and friendship. My heart hurts tonight for her. I hope that I can give her the same comfort, and peace that she was able to provide to me. This life is so hard. There is so much heartache, so much sorrow, so much hatred. How wonderful that the Lord has given us His peace in this dreary world. How wonderful that he provides us with lifesaving friends, and loyal family to wrap their arms around us in our darkest hours. How wonderful to be filled with such light, in such darkness. Life is hard, but worth the rewards that await us as we endure it well. Please endure it. As this trial hopefully comes to an end for us, I pray that I can be the friend that you all have been for me. Hug your babies, smooch your lover, thank your God.

Christmas

Oh heavens, how the the week slips by. I was trying to make a goal to post every day but obviously that did not work! I still have so many pictures and events to catch up on, while continuing to blog the present happenings. I will start with Christmas today. We decided to keep our Christmas pretty low key since we have received so many wonderful things from people this past year.


The kids enjoyed opening their fully stuffed stockings! My grandma crochets stockings for everyone in the family I have had mine since I was a baby and now we all have one. We love our stockings.

Stocking stuffers! Santa seems to always go overboard with stockings.
Christmas day, after Santa presents are opened at home, are spent at Gramma Cindy and Papas (Nate's parents). It is fun day. We spend hours watching everyone, individually, open presents, then a big huge brunch, followed my napping, snacking, playing and watching football. In the evening, after dinner, we play games all night. This year, 92 year old Grandpa Gooch, joined the festivities.
My beautiful baby boys.


Because of all of the gifts we have received this year from so many wonderful people we decided that Santa was only going to leave stockings. We adopted a family through a sub for Santa program and provided Christmas for them to "pay it forward" from the love we have received. Sneaky Santa left a present, the last present, behind the tree at Grammas house. A Kinect for our family. Needless to say, the kids were ecstatic.
Belley Boo. She is so much fun, and so beautiful.
Brunch!
I love these pictures. They are soooo Grandpa Gooch. It is nice to have these beautiful pictures.

Cousins! We are blessed with the best cousins ever. Not only are they the best, they are the most beautiful! We have so much fun with them! It is amazing how much you can love other children that aren't your own. I love these kiddos.
Oh my silly Spencer and his pranks, and gags!
Is there anything better than a Nakey Baby! Oh I love him. He is so delicious!
We have such a great family. I am so lucky to have married a man with such a wonderful family. We all have so much fun when we are together. It is nice to have best friends who you get to see often, and forever!
I love my lazy husband. Playing and sleeping all day. I don't think he moved from his spot except to eat! SMOOCH! Gotta love lazy Christmas mornings! I love my boys!

Mercy

I didn't have time today to put together a fancy blog with pictures, but I had a couple of thoughts I wanted to record. I realized that if all goes well, Spencer's last chemo will be two months from tomorrow. TWO MONTHS! Is that even a real statement? It makes me nervous to say it out loud, but I am thinking it may be really, real. Regular school and church attendance may be in our near future. Bike rides and playing at the park, SWIMMING, among many other activities may really be in our near future. Really real. Was there life before this cancer? I don't even remember. If there was, it feels like lifetimes ago. I also realized today that in four months Gavin will be two. This thought made me feel guilty. He was nine months old when Spencer was first diagnosed and I feel like I have not had the time or the opportunity to watch him grow up. In fact, he is 20 months today. I had another "take your breath away" moments this evening. It was more like "knock the wind out of you" but nonetheless, not enough air. I found a big stack of pics from over the past year, mostly at the beginning of treatment. There were a few different elements causing this lack of oxygen. The first being the severity of the physical damage from the tumor. Second, his sweet little baby face. He doesn't even look like the same kid. He is so much older now. And third, the pain you can see on his face, translates the pain I was feeling in the very depths of my soul. It is like opening old wounds. Old wounds that really aren't that old. And for a few moments I realized there was no air. I had to gasp for a breath, and be thankful for the present moments I have right now, with my son close by. Tonight Spencer had a break down. I am not going to go into the details of his bad choices, but I will say that he was unhappy with the consequences and decided he was going to leave. He put on his boots and his coat and headed out the door. I sat and watched him as he contemplated how far he would go. After about 15 minutes he decided to go farther than I could watch him from the window. A few minutes later I decided I would go and find him. As I walked out of the front door he came walking up the driveway sobbing. I walked to him and he looked at me with tears in his eyes and he said "mom, I made the wrong choice" referring to the mistakes he made to get him into this predicament. I gave him a big huge hug and knelt down to his level I told him "sometimes we make the wrong choices, but I will always come for you". I wanted him to know that I will ALWAYS be here for him no matter his decisions. Isn't that how our Father in heaven works? How awful would it be if we were abandoned during our darkest times, in times of shame and guilt? When we walked back into the house, we were cuddling for a little bit and he looked at me with quivering lips trying to hold back the tears. "Mom, I am sorry that I kicked your car". Oh my Spencer. It took everything I had not to burst into laughter. I love this kid. I love his deepest understanding of true repentance, and his rational thinking and lack of pride that enables him to apologize. Life is too short and too precious to not apologize. Do not wait for the other person to make the first move. Show love, character, and mercy, just as our Savior does for you.

BEAUTIFUL

The wonderful, incredible, uber talented, Jen Fauset has done it again. She is just purely amazing. Here are a handful of my favorite pictures from our last photo shoot.

Chemo Day

Remember how I used to blog the same day as treatments and stuff? and with pictures?! Well I am trying it out again. My laptop is still out getting fixed but my wonderful husband got me a new camera last week so I am back in action! Today was a fast and easy clinic chemo. We spent more time chatting to all of our friends then getting actually treatment done! OKAY SO FOR THE GOOD NEWS...I talked again to our doctor about the PET scan results and what we will expect at the end of supposed treatment. She said the the final results of the scan were NEGATIVE! The spots of energy were so small that the tumor cannot be considered active! The areas of energy were most like energy from the body lighting up on the scan. The group of doctors all sat down to discuss it and are all pretty sure it is a small mass of scar tissue left. SO...we will continue with treatment as planned and at the end of our road map, we will re-evaluate and then they may decide to biopsy it again OR after talking to surgeons they may be able to REMOVE IT! It is not embedded in the nerves any longer and may be small enough to take out! Today is a good day. Happy, happy day! I cannot begin to thank you to the degree deserved for all of your fasting and prayers. Almost a year ago we found out our sweet little boy had stage 4 high risk cancer, and today we hear that from a macro view there is no cancer. Chemo goes on as planned because we cannot see it on a molecular level and we don't want to take any chances! We are so grateful to the Lord for all of our blessings!

Spencer's favorite snow hat is this "ninja" mask he has. He loves it and when we first got to clinic he would NOT take it off! Silly guy! I just took pics of his normal routine there, weight, height, blood pressure. Pam does his vitals. We love her.


Someone donated a couple of Kinect systems to the clinic. Spence tried to play it in our tiny little room and almost broke his toe!
Tiffy Lou, we love you. Is she not the hottest nurse ever! WE L.O.V.E. her!
First thing he did when we got to clinic was raid the snack room! Eating, eating, and more eating. Yay!
Can you see the outline of peach fuzz on his head? It is even longer than it looks!
Lindsay giving Spence his Vincristine. He is a pro!

Kinect

Spence was able to spend some fun quality time with one of his bff's Moab, today. They played Kinect, and giggled and chowed down on candy. Then Spence spent the rest of the evening at her house playing more video games. One of the overheard conversations today:
Mo: So Spence what did you get for Christmas? Spencer: Kinect and a pocket knife. Mo: cool! Spencer: yeah it has a flashlight and can opener too. Mo: Well then you will always be prepared.
I just love kids and their cute brains! It has been awhile since I added any pictures to this blog so I through in one of Gavs and Belle too, because they are just so darn cute! More picture blogs to come! Oh and today Spencer is wearing his "BRAVE" shirt given to him by cute little Lizzie Lou.

Punching Bag

I do not have anything profound to say tonight. I just have a whole bunch of feelings in my heart that I cannot really get out. I do not even think I really know what they are. I think I feel something. I think I feel too much, but then I wonder if I am feeling numb. Is it possible to feel too much? So much that you start to not feel at all? I have had some new life changing experiences with this trial come about in the last week or so. I want to say that I have new priorities but that is not the right thing to say. My priority has always been my family but it seems now, nothing else matters. I have this "refound" deep love and appreciation for me husband. I miss him when he is gone and I get excited to see him when he gets home. My heart flutters when my baby girl signs she loves me while walking into class, and as she blows a million kisses my way. I get so excited to see my babies first thing in the morning. I love to smile at them and show them how happy I am to see them. I just love to be with my family.
Spencer's hair is growing back. His eyelashes are almost fully grown, along with his eyebrows. His head is fuzzier than ever! It is fun, but makes me a little nervous. I don't know why. I feel like when his hair grows back, he will just look like a normal, skinny kid. Strangers will not be able to see him and know the trials he is facing, the strength he has, the war wounds. It was hard for me at first to get all of the stares when we would go out but now I feel honored to have people be touched, if only by a glance, by this giant. This hard year of ours has been so emotional that our lives are forever branded and I feel like it is so hard to move on, I feel attached to this bald guy. I think I am afraid of falling back into the comfort of normalcy only to have to go through this again. I almost feel as emotional about the "end" of this as I was when we were first diagnosed. The difference is experience. There is much more experience on this end. In the beginning the emotions stemmed for the unknown. The end of this ride is just so much more than I thought it would be. It is not a smooth transition. My friend said that it is like Post Traumatic Stress Disorder, we got through the crisis but its the aftermath that brings so many emotions and acceptance of how we have been changed. I think she is soooo right. I am so exhausted and sometimes wish I could just sleep for days at a time. I think I am hoping to catch up to reality, or wake up from a very long dream. But for now I will continue to do some major damage on a very unlucky punching bag.

Have I Told You Lately...

I do a lot of reflecting in the shower. Not sure why. It is one of the only times of the day that I am COMPLETELY ALONE without any children. It is quiet, and I can actually hear all of the thoughts in my head. These are the moments that I think about all that people have done for me and I come up with all of these elaborate plans to thank them. For those of you who know me personally, know that I am not a simply kind of folk. I like to make things bigger than life. I like to take my "could be" quiet life and fill with all kinds of projects, service, excitement, etc, etc. It's like I am afraid of simplifying. Well...one of the things that the Lord has been trying to teach me through this trial is to SIMPLIFY my life. I would love to do so many wonderful things for all of you who have done so much for me but I a) have no energy after all we have been through b) do not have enough time in my day to thank all of you the way I would love to and c) NEED TO LEARN TO CALM DOWN. This is my blog of gratitude to all of you. There are hundreds of you who have personally done specifically wonderful things for us. And although I would love to throw a big huge party for you all or create a fancy present, I just cannot at this time. I hope that you will take this blog and know that I think of you all individually. Not one act of kindness has gone unnoticed. I LOVE YOU. THANK YOU FOR BEING YOU. FOR THINKING OF US. FOR DOING WHAT YOU DO. Please know that this is my eternal gesture of gratitude (I am using this word too much) for you and that you are wonderful.

So Many Things

It's been a little while since I have written a truly heart felt blog. Tonight just might be the night. There are a lot of factors going in to this post but I am not quite sure how to cultivate it so bare with me. Spencer is inpatient for chemo tonight. He has finished it. He has one more left. I do not even know where to begin with these feelings. Almost a year ago we started this outrageously terrifying journey. I try to think of all of the experiences we have had and there are too many to intelligently conceive. Many months ago I was faced with losing my son. Losing my oldest child. Losing the one who made me a mother. Little did I know that the door of overflowing blessings would fill our home. Little did I know that eternal friendships would be made, that priorities would shift, that perspectives would completely change. Eleven months. Eleven months of hell. Eleven months of immense peace. Eleven months of holding, touching my children and loving them with a completely different kind of love. I imagine it is close to the love that our Savior, that our Heavenly Father has for us, but I do not know if that is even possible. As I hold my children, weeping, hoping, praying to have them for years and years on this earth, I feel my Saviors love, holding me, holding my griefs, my sorrows, my pains, my sins, whispering peace throughout my soul. How should I be so lucky to feel so close to heaven on this earth? My dad has knee surgery today. Isabelle, Gavin and I visited him and he made a reference to me knowing "everyone." I feel blessed to have so many friends. To know so many people. To have so many people close to me. I love making friends and I love keeping friends and I am just so lucky. Life has seemed so fragile to me lately. There have been many deaths lately. Am I afraid of death? Am I ready? Can I stand before my God and say that I did the very best that I was able? I am trying. Is that a good enough answer?I have had some heart changing experiences. For those of you who personally know me, you know that I am always busy. I have a hard time saying no, and a hard time just stopping to breathe. I had some obligations today and I decided to say no so that I could visit my dad in the hospital. I am glad I did. I love my family. I did not grow up in a fairy tale family, or even a functional family and I feel so blessed to have that now, even in my adult years. My stepmom is one of the best people I know. She is filled with so much love and service for everyone around her. She is constantly doing things for her children, including me. The Lord has blessed me with her. I am also so lucky to have awesome stepbrothers and sisters. I have a deep, true, sincere love for them. My dad and I have had many trials in our relationship throughout our lives, but I am so thankful to have him in my life. He would do anything for me. I have been dealt some pretty hard trials in this life, but more than that I have been blessed beyond measure, literally. My heart is full. I told you a couple of posts ago about the headboard story. I was able to pick it up today and meet the family. We were able to exchange email addresses and blogs. It is amazing how much I relate to this mother. I read one of her recent posts and I hope she doesn't mind but I am going to share it with it because I knew exactly the feelings. I thought for a moment that they were my words. Her son Spencer has been cancer free for six years now and it gave me hope and excitement. Her are her words:
"When Spencer was diagnosed with cancer, the surgeon told us that a cancer diagnosis was like getting hit by a Mack truck. You might survive, but from that moment on, life will never be the same. I think of that often and am amazed at how true it is. This week we're celebrating Spencer being 6 years off-treatment. Six amazing years. And tomorrow, our cute boy turns 9 years old. I told Mike tonight, I feel like we're in positive integers now. For years after Spencer's cancer diagnosis, I was counting down the years to when he turned 8 and reached the 5-years-in-remission mark. We made it, and now we are counting up the years from it.

Life really is pretty normal for us. Crazy busy, but normal. And so I sometimes forget. And then I walked into Spencer's room tonight to shut off his light, because he left it on and fell asleep. As my hand reached for the switch, I looked at Spencer and realized that it's the last time I'll see this 8-year-old version of him. And I felt a wave of sadness, followed almost immediately by a bigger wave of gratitude. A wave of realization once again that so many moms that I knew during treatment are counting the years without their children. And we're celebrating 9 years of living tomorrow. He's such a sweet boy. I softly walked across the room, bent down, and kissed his cheek. He sighed in his sleep. Man, I love that kid.

I forget sometimes that we are enjoying a "delay en route." I heard Neal A. Maxwell refer to his life that way when he was treated successfully for cancer the first time, and it's stuck with me ever since. We're all headed to the same destination. Some of us get there sooner than others, and some of us have longer journeys, but we're all heading to the same place. We were afraid, once upon a time, that Spencer's trip here on Earth would be really short. But he was granted a delay en route. We all have been, really, but I think about Spencer's most often. I think about all of the cute things he has said and done in the last 9 years and how I could have missed so many of them, but didn't.

I really still don't pretend to understand it--how one child is spared and another taken. I feel a mix of guilt and gratitude every time I go visit the blogs of our little friends who have lost their battles with cancer. But I do realize that our lives are in God's hands, and He will help us through our journeys, however long or short they may be. I'm just feeling especially grateful tonight that we get to celebrate another year with our Spencer boy tomorrow. He's a miracle of gigantic proportions in our book, and we are thankful for his part in our lives."

I am thankful that through "random" routes I have been blessed to meet this family. We are all just people on this earth trying to get back, trying to live, trying to love. Take joy in being touched by all those you cross. Everyone has something to give you. I think one of the things that makes me the most emotional is saying goodbye to the people who have saved my son's life, who have saved his spirits, who have held his hand throughout most of this journey. Spence was emotional when he realized that he would not be seeing Mike, the child life specialist, after his next visit, and Dylan, our beloved home health nurse. He loves them. He looks forward to their visits. He is this sweet eight year old boy who has come to understand the importance of relationships. He conceives the depth of true friendship. He is beyond this level of mortality. He has held the hand of God on this earth. He knows things. I am so blessed to be his mom. I am so sorry this post is so long but I have so many thoughts, and so many tears tonight. I am overwhelmed that we are so close to the end of this long journey but also so sad to be saying goodbye to routine visits from people we have grown to love. I think by now you all know that I am moved by music and by lyrics. I want to leave this, one of my favorite hymns with you. The song should be playing now. A little side note for those who do not know, ebenezer, means "stone of help".

Come Thou fount of every blessing
Tune my heart to sing Thy grace
Streams of mercy never ceasing
Call for songs of loudest praise
Teach me some melodious sonnet
Sung by flaming tongues above
Praise the mount I'm fixed upon it
Mount of Thy unchanging love

Here I raise my Ebenezer
Hither by Thy help I come
And I hope by Thy good pleasure
Safely to arrive at home
Jesus sought me when a stranger
Wondering from the fold of God
He, to rescue me from danger
Interposed His precious blood

O to grace how great a debtor daily I'm constrained to be!
Let Thy goodness like a fetter, bind my wandering heart to Thee
Prone to wander Lord I feel it, prone to leave the God I love
Here's my heart Lord, take and seal it, seal it for Thy courts above

Psalms 30:5

"...weeping may endure for a night, but joy cometh in the morning." Psalms 30:5. Maybe I am premature in having these feelings and relating this scripture to our situation, but I am feeling more joy than sorrow and weeping right now. I am sorry that I did not write this post earlier. I have had many people ask me about Spencer's PET scan results and I have been slow to blog. I have been so busy around the house and with the kids. We were able to do the PET scan at PCMC this time and not at IMC. I love IMC but they are just not as "kid friendly" as Primary. He did not have to be sedated, he did not have to have an I.V., he did not have to get cathed. It was just a much better situation. Plus the tech was one of our favorite guys who also does his bone scans. Spence did a pretty good job at drinking most of the contrast. Scott, the tech, said he makes a little for himself to make sure it tastes good enough for the kids. Love him. After about 30 minutes of laying still in the scan we were done, and had no other testing so we were out of there. Nate was super anxious for results and asked me to call them at 8:30 the next morning. I had to let him know that they don't even open until 9! When I finally called, they told me that both of our doctors were out of town. Our lovely chemo coordinator, however, called us back shortly to inform us that our dr. was indeed there that day, that she knew we were anxious, and would call us as soon as she saw the results. Melly and I took the kids to a movie (Tron), and I just knew I would get a call during it. Low and behold and the very end, and very loud credits our doctor was calling. I threw Gavs to Mel and ran down the theatre as fast as I could. She told me that the scan results were significantly better than the last one in June. She said that there is still a little bit of malignant activity but that it was really hard to find. She said they had to search hard to find it. She hopes and anticipates that the next bit of chemo will resolve any last bits of malignancy and HOPEFULLY we will be done at the end of March! I asked her what he thoughts were about having to continue treatment if the cancer was still there. She said if that has to happen we would most likely look into more radiation (blah). THANK YOU THANK YOU THANK YOU for all of your prayers, faith, and fasting! They are working. I ask you to please continue to pray for us so that we can get rid of this once and for all and that Spence can go on to living a normal life again. A long, healthy, normal life!