Thursday, September 30, 2010

Project Super Quilt

Okay so I am so excited about this project that I would love your help with. Usually the beds in ICS are made with super fun and super cute quilts that lighten up the room and make things feel more "homey". A lot of these kids are here for days at a time and some of them weeks, if not months. These rooms can be so sterile and it is just one more thing to make things more comfortable. I was talking to our housekeeper here, whom we love, and she said they are running out of quilts. They have small quilts that work for the babies on this unit but they are almost out of twin size quilts that they can use for the majority of the patients. These quilts are for the unit. They stay here and helpful in brightening up the rooms. My favor of you all is to help me collect AS MANY TWIN SIZE QUILTS AS POSSIBLE. The dimensions are 70 x 90. They do not have to be fancy. Just fun, colorful patterns for both boys and girls. This will be called PROJECT SUPER QUILT. If you are not the "seamstress" and/or would love to have your kids, church, family involved, I would also love to have fun fleece blankets made to give as gifts to the kids on this unit. Remember we need blankets for boys and girls. If the whole blanket thing is not your thing I am also trying to get small sized lotions, like good ones from Bath and Body works (just the small size), full sized shampoos and conditioners, face wash, laundry detergent, ironing boards, and irons, toothpaste, and all of the essential toiletries for the parents here. It is hard to be here for a long period of time and use sample sized, crappy toiletries. It is just one thing to help make the whole experience feel like home. We have washers and dryers, but no ironing boards or irons and let me tell you, suitcased clothes do not stay unwrinkled! I am really excited for this project and hope that I can get you all on board. Please get your kids, your family, your churches, your schools involved to help us make the ICS department more enjoyable for these sick kids are their tired families. My email address is email me to get on board and I can tell you where to send them etc. I am so excited for this project and know that you guys are so wonderful and will come together to help me with this project! I would like to have blankets to deliver by Christmas. I have a lot of people ask me what they can do to help...this is it!

Wednesday, September 29, 2010

Just Pictures

His poor little heart had been pumping at about 145 times a minute since we got here. Today it finally went down to 106!
Sorry this is a bad picture but 37.5 is a normal temp! It has gone up since then but has broken multiple times today! First time since we have been here!Spence and Uncle Kevin. Uncle Kevin just went through his own hellish journey with Multiple Myeloma and is now in remission! Yay!
Aunt Dale and Hillary with Spencer. They have been such a support to me through all of this. It is nice to have support from people who understand, who have gone through it too!
I wish I had a nice camera. The view is beautiful from our window especially at sunset!
Sleeping sick boy. I think this may have been the first night we were here LAST WEDNESDAY.
Going in for a CT.
Ryan, Jann and the girls came by to say hi and give him an ultra cool dragon and knight!
Still hanging in there. This was right before he got really sick.
Bedside X-ray. Can you tell how swollen he looks in this picture. My poor guy.


Okay. So I am feeling a little better. It seems as though we are getting a hold on things. I just wish we wouldn't have had to wait so long. His vitals are better and I am overwhelmed by the response of love that I received this morning only minutes after posting my last blog. I am so lucky to have each and everyone of you in my life. I hope that I get the opportunity to meet those of you who follow our story that I have not yet been privileged to know. We are going to be in this hospital for a while but I am thinking that we may have a hold on things currently. Let's just pray things continue to progress without any digression. Pretty much the verdict is that he is severely neutropenic. As a review for those of you who have forgotten, that means he has ZERO white blood cells. Our neutrophils, one type of wbc that we have, is most important in fighting off any foreign invaders. He has zero of them. None. This is caused by the chemo he had. It killed them all off. He came in here susceptible to just about everything out there and that is what he got. He started with a neutropenic fever. He then caught a bacterial infection in his line which we treated. His neutropenic fevers continued raising heart rate, lowering blood pressure. He contracted a rhinovirus (a cold) which has infected his sinuses. Most severely he has come down with Typhlitis, which is common in pediatric patients receiving chemo and who become neutropenic. The CT scan a couple of days ago showed signs of it but the xray did not. After talking to the Infectious Disease Dr. he says a CT scan is more accurate and will take that diagnosis, especially with the diarrhea and vomitting he has been having. X-rays show concentrated clumps of white blood cells, which would be where some kind of infection is, and since he does not have any white blood cells there is nothing to show. He also has a mild case of pneumonia which is being fought by some of the antibiotics already being taken. They are adding one more just to help with another form of pneumonia. So my poor guy has gone through the ringer and will just have to keep fighting a little harder. For my own documentation I am going to list all of his current meds. Antibiotics are: Flagyl, Vancomycin, Gentamicin, Septra, Zosyn, and now Azithromycin. He is also on an Anti-fungal, Caspofungin. He has been taking Ativan for anti-emetics, oxycodone for pain, Benedryl and Tylenol to bring down fevers. Our nurse today is Courtney, whom I have never had, but I L.O.V.E. her. She is fabulous. Spencer's vitals are looking good. His temp is currently 37.9 c which is about 100.0 f. 100.3 is considered a fever. So at the moment we are fever free. His heart rate is back down to 107-114 which is fabulous compared to the 140-160 it had been. His pressures are beautiful. His oxygen levels are still hanging out on the low side so he has been on oxygen all day. He has not slept well for a few days and tries to be tough and not take meds. I asked the nurse, however, to medicate him because he needs to sleep to heal. He, thankfully has been sleeping all day. Thank you for all of your prayers and fasting. Please continue to do so. I need this boy healthy! We love you all.


I am about to contradict all of your comments to me about staying positive and strong. Well maybe I am still strong but I am now going to focus that energy on being negative and aggressive. I am angry. I am sick of this stupid cancer. I am sick of having to watch my baby suffer EVERY SINGLE DAY. I am sick of the thought that we could be here for another week or maybe even two, just to prepare to come back to get more chemo that could have the same effects on his fragile little body. I am sick of the fact that we do not know what is wrong with him. I am sick of the "oh he could have this, or maybe this or maybe this" and then getting results that say it is not one single one of those things. How can we save his little life? How can we get him better? How come nobody can figure it out? Why? Why do I have to spend so much time away from my kids? I loathe all of this. I am angry. What kind of refiners fire do I have to go through? I don't know if I can take any more of this heartache. It just makes me mad. And then it makes me mad to be feeling angry. This is not me. I want my family back. I want my healthy son back. I do not know how much more of this Everest I can climb.
Rant over. Now I will just give you the facts. Last night was ANOTHER rough night. Abdomen xrays show that Typhlitis is not the case. There are no signs of it. Chest xray shows "possible" pneumonia. He is on oxygen with a bubbler, which provides moisture so that his poor little nose does not dry out. His temp continues to fluctuate between mid grade to high grade. Diarrhea all over the bed in his sleep three times last night. This entails, stripping his poor, frail, shivering body down, scrubbing him down as he stands there exposed. How embarrassing for him. How exposed he must feel. C-diff testing which takes 24 hours, and toxin testing which could take 48 hours. Barfing all night. Mucousy, black vomit in larger than normal amounts. Rapid breathing. Normal respirations are between 18-20 a minute, his are 45 a minute. His pH are higher than safe. His CO2 levels low. He has become basic because he is breathing so fast. CO2 is acidic and since he is breathing out so much he is losing acidity causing his body to become basic. Still waiting for docs to decide what to do about that. I DO NOT want to go back down to PICU. If it means making him better or saving his life then of course it is the only option, but we feel protected down here with our "family". It is so exposed and open and germy down there for him. Blood pressures, heart rate and oxygen levels were all stable last night. Potassium is low so he is receiving more. Blood transfusion last night helped with his overall stability. I am now feeling nauseated. This is almost more than I can handle. Obviously the Lord feels like I can. Sometimes I wish we could rescind. "We decided that we don't like this trial so we are checking out, is there something better we can try to endure?" I don't think Heaven works that way. I am begging for your sincere fasting and prayers. I NEED him to get better. Please plead with us for a diagnosis of some sort so that we can get him better. I haven't seen my husband in over a week and it looks like it will be another week atleast. We NEED to be together. We NEED Spence better.

Tuesday, September 28, 2010


Last night was a little hellish. We finally got settled in the PICU around 3:00 a.m. Then I find out that they kick parents out for an hour twice a day for shift change, so really, there was not much sleep last night, literally. The CT scans showed Typhlitis, which is an inflammation of the Cecum, part of the large intestine. In short, an inflammation of the colon. It is common in cancer patients after harsh chemo treatments. They started him on two new antibiotics and FINALLY after 6 days of fevers they broke this morning! He looks much better. I am so thankful for all of your prayers. I am breathing much better today. It has been an emotional week for all of us. Maybe I will get some pictures up in the next post!

Monday, September 27, 2010

Heart Broken

I don't know what to do anymore, or how to feel. I am sitting here next to my baby boy, his eyes glazed over, barely open, barely able to speak, as machines beep like crazy. High respirations, heart rate high, blood pressure low, fever ridiculously high. It won't stop. How am I supposed to feel? What do I do for this little boy whose life hangs in the balance. I don't know what to do for my sweet baby who is fighting hard for his life. How long can my heart do this? It is now 1 in the morning. Blood pressure was dropping, oxygen levels dropping, labored breathing. Lots of doctors in the room, worried, I can tell. My heart racing, lots of prayers going on in my head, lots of pleading in my heart. The decision was made to move him to PICU (Pediatric Intensive Care Unit) to take extra "precaution." They pumped 3 bolus' into his tired little body causing respiratory problems. When that much fluid is dumped into a body the blood cannot soak it all in so it can leak into the lungs. Being in the PICU will provide us with immediate "intensive" respiratory and blood pressure care. I think this is one of the scariest moments, aside from his first diagnosis that we have experienced, thus far. I am feeling a lot more peaceful now. He is stable and his responsive. We are having normal conversations, even at 1:30 am. I love my son.

Running Low

The weekend is over and I am back in the hospital. My wonderful husband who I haven't seen in I don't even know how long stayed the long sick weekend with Spence. It is hard to get any rest away from the hospital when Spencer's temp spikes to 105.4 and is so sickly he won't talk. I am so tired. The extreme fatigue is setting in again. It was good to get some house scrubbing done and enjoy time with the kids. I am just kind of blah. I feel relieved to be back here with Spence, sad to leave my kids, and I miss Nate. All of these conflicting emotions make me tired, so tired. Spencer's fever is low grade at the moment, until the Tylenol wears off. The doctor just left the room. We are planning on a CT since we are on day 5 of high fevers, to make sure brain and vital organs are functioning correctly and to see if we are dealing with a fungal infection. His stomach has really been bothering him so they will CT his tummy too. They are still hoping to save his line, and his bacteria cultures are negative but if he is not getting better it still might be an option. At this point I am not sure if we will be leaving at all this week. I am thankful that they have washing machines and dryers for us and that I can bring my Scentsy. It makes things a little bit better. I don't have much to say today. I don't have the energy to say much of anything. I am trying my hardest today to do hard things.

Saturday, September 25, 2010


I have so much to blog but I am so disorganized without my computer, which is in the hospital with Nate and Spence. Plus I don't like taking away from the little time I have to spend with Belle and Gavs. I just wanted to blog a few insights that I had. On Friday afternoon, I was walking down the stairs at the hospital and a sweet little boy about 4 years old was walking slowly in front of me. He was blind. His mom was helping him count steps down the stairs and count steps down the hall. At that moment I felt blessed. Although my sons life hangs in the balance he has been able to partake of this incredible world that God has created for us. He can see it. He can see me. When I tell him I love him or beg him to get better he can see the sincerity in my eyes. He can see the ocean, and the mountains, sharks, and pizza. Spencer will not always have cancer. That little boy will most likely, always be blind, never really being able to enjoy the magnitude of beauty around him, or see his moms sweet smile.
Today I was reminded of how wonderful my friends are. I was able to attend a church meeting with my friends today and I am amazed at how lucky I am. I feel safe with them and I know that they love me and my family. I may have had many trials in my life but the Lord has overcompensated by giving my, quite literally, the very best friends in the whole entire world.
Today was not only a day of recognizing friendship, but the extreme love I have for my family. Not only am I blessed with great "blood" siblings, I have been blessed with an incredible "step" family. I almost hate (this is not a word I use lightly) using the word "step" because I feel such a great love for these people. My brother Logan sat with Spencer all day at the hospital yesterday so that I could be with Isabelle at her FunRun. My dad, Suzi, Arza, Logan, and Raynee all showed up to cheer at Belle's soccer game today. Tonight Arza (who is 13), had a friend over and let Isabelle tag a long, and I think he honestly enjoyed it. My family is so great. They are supportive and positive and love my kids with all of their hearts. How lucky we are.
These are just a few of the positive things I have been able to take out of my day.
Spence is still pretty sick. His fever has been pretty high all day but is definitely dropping. His blood pressure is kind of low, and he has been throwing up and sleeping more than usual. I think it is better for him to sleep through the hard times. It will help with the healing of body and mind. The doctors are hoping to save his line by running antibiotcs through them. If they can clear the infection then the will not have to replace the line. If in a couple of days the fevers do not cease then the line will be pulled, infection has to clear, and then line replaced. I don't know if we are ever getting out of this hospital. Keeping a positive attitude totally helps make the situation tons better. I can do hard things.

Friday, September 24, 2010

Glass Box

Quite honestly, I am much too exhausted to blog. My feelings, however, are much too raw to let them go. Today was sucky. Plain and simple, sucky. Spencer's fevers are not going down. In fact it has been doing the opposite. On my way home from the hospital today Nate calls me to tell me that his temp is now 104.9. Um, excuse me? 105? It has been awhile since I have been hit with these realities. I have become so comfortable to a normal, healthy boy and here I am again mentally preparing myself. What would I do if I lost my son? If I lost my first born baby? How do you move on from that? Have you ever been surrounded by so many people but felt so lonely. I feel like I am in a different dimension. It is like I can see what is going on but I have no connection, no communication. I am stuck in this glass box and I cannot get out. I am screaming but no one can understand me. They can hear me, but the words do not make sense. It was so nice to have a break from it all this summer but the normality of it all has made the real life situation a lot harder to accept again. Tears are hard to come by these days but today I haven't been able to turn them off. What if's and anxieties keeping me awake and distract my thoughts. We have been through this before and we can do it again. My guess is that his line will have to be replaced once again. Please pray for my Spence that his fever will break, his heart rate will go down and that the bacteria will clear up. A few moments ago a friend commented to me "may you feel the presence of Angels surrounding you", and I feel them. " Peace I leave with you, my peace I give unto you, not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid." John 14:27. We can do hard things and with God we can do impossible things.

Thursday, September 23, 2010


All bundle up in the Emergency Department last night.
The effects of Benedryl. Who needs a pillow anyway?
Our cute return missionary tech, Tommy, just got back from Korea and wrote: Spencer, you are here let us celebrate" which means Welcome Spencer! Later in the evening our nurse, who knows Russian, wrote his name in Russian. So cool!
Playing video games. Tomorrow we will do homework.

I was feeling pretty positive today. I was thinking about how lucky we, as a family, were to have a great summer "off" together. Instead of stressing over these sick and fever stays I just need to expect them in our lives. I just need to say "this too shall pass" and stay calm. I am so lucky to have a stepmom and neighbors who will take my kids without even pausing, and that they feel loved wherever they are. I forgot to mention last night, that we are in the same room that we had in March when Spencer was really sick. It was a little creepy to come back to this room. Bad vibes or something. When the doctor came in and said that she is hoping for a short stay I was thinking to myself that I cannot even wish for those things because most likely it will not be a short stay. That is just the way it works for us. I can do hard things {repeat 20 times}. A few hours later.... Spencer has had a rough day. He had a mild allergic reaction to his platelet transfusion. He had raised welts all over his bald head and down his back and on his face. They were itchy and annoying. Then they had to get a mucus sample from his nose (yum) with the suction and that was an experience on its own. He screamed bloody murder and I had to hold his hands down, and eventually his head too because he tried to bury it in his pillow. Oh happy times. After the torture we got news of his blood culture results: positive to bacteria. Yay! (that was totally sarcastic). So now we are dealing with a bacterial infection. Last time his line had to be pulled and replaced. I don't know what he will do if that has to happen. I think he is about fed up. This poor kid. Will this ever be over? I wish we were home.

Wednesday, September 22, 2010


You are probably all amazed at my THREE blog posts in one day! It must really be "one of those days". We are sitting at Primary's Emergency Dpt. right now while Spence gets antibiotics and fluids. We have been informed that because of his low blood counts and high temp we will be staying over night. I am just hoping that over night does not turn into nights. The hospital is comforting to me now. It is not just a sterile place. It is a place of healing. It is a place of smiles and any desire at the touch of a button. We have friends here. Although it is comfortable here does not mean that I would not rather be at home with my whole family. I do not like being apart. I started this blog early in the evening and now it is after midnight. I wanted to blog more but I am exhausted. Spencers ANC is about ZERO so we will be here for awhile. I am feeling that indescribable exhaustion setting in again. I am feeling helpless away from the other kids, and sad that I have not been able to give Isabelle the time she needs from me. I am sad so I am going to go to bed.

Cancer Sucks

I am sitting here feeling a little depressed. Spencer's temperature in hanging out in a not so great range, and I feel like I need a little faith. Faith. Faith. Faith. Where are you? I feel that today I am holding on to Spencer's faith and I am banking on it being strong. We have not had to be admitted for a fever in quite some time and I REALLY don't want to have to do it again. Fever admits have no known end. We get to leave after 24 hours of being fever free, that could be a day that could be 5 days, etc. He has been throwing up mucus, which is not normal for him, and throwing up more often than normal. This last chemo kicked his cute little bum. I am afraid to think that school is pretty much done for him until January. I am sure there will be moments of participation but with RSV and flu season almost upon us I am not taking any chances. We have made it this far, I am not putting anything into jeopardy. We have had to cancel many things this year and the kids have had their fair share of disappointment and I just keep telling them "this year sucks, we are going to continue to have disappointments and chaos, but next year will be better". They know I am serious when I say "sucks" and it usually calms them down until the next missed event. Nate and I have to say the same thing to eachother. Spence may be in patient on Thanksgiving. That is depressing for us to think about, not being together. But yes, this year sucks and next year will be better. There are so many things to be thankful for in this sucky year. I will keep you updated on the fever and please pray with us (for my faith), and for this unruly temperature to behave. Cancer sucks.

I Love....

I love so many things, but at this moment a few come straight to my mind. I love Gavin's gap tooth smile. I love boot camp. I love picking out Isabelle's outfits. I love snuggling with my babies. There really is nothing better. I love sitting with Belle while she draws. I love home schooling Spencer. I love Indian Food. I love that all of Gavin's animal noises sound like a dog, which does not sound like a dog. I love reading Percy Jackson to my kids. I love that Spencer is on the 4th book in the series he is reading. I love to organize and throw things away. I love that Isabelle says "literally" all of the time. I love fitting into smaller jeans. I love making Nate happy by making him breakfast before work and lunch to take to work. I love White Chocolate Macadamia Luna Bars. I love strength training. I love reading the scriptures. I love it that Gavin says "deet deet" for binkie and blanket. I love it when Spencer has a normal temperature. I love Jack Johnson. I love it when Nate comes home. I love Autumn. I love refinishing furniture. I love to read. I love Thai food. I LOVE Scentsy. I love Jen Fauset Photography. I love my family. I love my husband. And did I mention, I LOVE snuggling! These are just a few of my favorite things!

Tuesday, September 21, 2010

Spencer's Talk

I have been "spring cleaning" and dejunking my house and I have come across a bunch of pictures of the kids that had been misplaced. I also happened to come across an old digital camera that I had randomly taken a few pictures on at Christmas time last year. I noticed in one of the pictures of Spencer that his smile was off. It was uneven. My thoughts before were that this tumor began in approximately December, and in this picture I can tell it was already causing some pressure on those nerves. {Sigh}. We have come along way but I miss that sweet boy with lots of crazy hair. Those are times and people that we will never go back to. We have all grown and become different people, stronger, wiser, more thankful. I would not trade our blessings in for anything, but my heart still aches when I look down this big mountain that we are slowly climbing.
On Sunday, our kids group, or Primary as we call it, put on a program for the first hour. The kids speak and sing and it is always an enjoyable, spiritual experience. This year was different. They asked Spencer to give a talk on "The healing powers of Jesus Christ through faith". Wow. Just the topic made me emotional. I asked Spencer the key point of his journey that he wanted to include. It was a hard talk to even write. Spence was getting emotional as he expressed his testimony of Christ to me, and he would get embarrassed not recognizing why he was feeling this way. I explained the feelings of peace and the Holy Ghost he was feeling. As Sunday rolled around he began to be nervous. The program began as cute as can be with the sweet kids singing their songs of Christ. Isabelle said her part perfectly from memory and then it was Spencer's turn. His soft, sweet, sick voice made things even more emotional but he had the congregation in tears. I was holding myself pretty well until he started truly bearing his testimony on his faith in the healing powers of Christ and he began to sob and he expressed himself. What an incredible kid. Once again I am thinking to myself, "how did I get picked to be his mom?" His voice was so quiet that most people were not able to hear his words but could feel his spirit and his faith. I had a few people ask for a copy so that they could understand completely what he said and made him so emotional. I decided I would post it here:

I would like to bear my testimony on the healing power of my Savior Jesus Christ and the power that faith gives me.As many of you know I was diagnosed with Rhabdomyosarcoma, a cancerous tumor on February 2 of this year. I have had a very challenging year but have grown in my faith.I have a central line for setup for long term I.V.’s in my chest and I am unable to get it wet.When my mom told me that I was going to have to wait to get baptized until next year I started to cry.I wanted to become a member of the Church so very badly so I prayed and had the faith that I would be able to have it happen.My mom came up with a way to wrap me up very tightly around my line to keep it dry from any moisture.It ended up being one of the best days of my life.Changing my bandage around my central line is also very painful and uncomfortable and I have to have it done every week. Sometimes I forget to pray for comfort and that is when it hurts the most.Whenever I pray that it will not hurt it is much better than the other times.When I was first diagnosed I had to have radiation. Every one we know that has had radiation has had to get these small tattoos that mark precisely where to administer the lasers.I was so afraid of getting a tattoo so I said a prayer and begged Heavenly Father to make it so that I wouldn’t have to have one.The next day we went in to get fitted for everything they said, “oh wow, this is a first, we don’t think we will have to give you the tattoos”.My mom was amazed at my faith after I told her I knew that I wouldn’t have to get one because of my prayer.Before I started radiation they molded a mask that fits my face so that they lock it into the radiation table, so that I don’t move. It is kind of scary.One day I was feeling really sick and I threw up in my mask I was locked down and I couldn’t get out.The techs ran in there to get me out and I couldn’t stop crying.I was afraid to go back and get it done again because I was still feeling sick but I really needed the radiation to shrink my tumor.I said a prayer that I would never throw up again in my mask and of course I never did. A lot of people around the world and especially in this ward have fasted and prayed for my recovery.Because of your faith and the prayers and love of so many around us my tumor continues to shrink.I have a very rare form of rhabdo and the doctors did not know what to expect but the Lord continues to heal me.He has protected me from feeling so sick during chemo, he has healed me from some of the infections that I have had from the chemo.Sometimes our prayers are not answered in the way we want them to be.When I was really really sick in March and I wanted so badly to go to the fundraiser, I prayed and prayed and had blessings that I would get better, but I still was not able to go. Even though I was disappointed I knew that the Lord was protecting me.There was a reason that I was not able to go that only He knows.And I am thankful that he knows what is best for me.Even though I have suffered many pains and trials throughout the last seven months, I know that my Savior has felt every one of my pains and sadness and has suffered more than I have.I know that he can comfort me and heal me. I am thankful for the Priesthood powers on this earth and for a dad and grandpa’s and uncles, who are worthy to give me blessings whenever I need to feel better or feel comforted.I know that I can pray to my Heavenly Father to heal me.He heals me every day.My last evaluation said that the tumor had shrunk to half of its size and that it has pulled away from my skull.The doctors are amazed at my recovery, and I am thankful to my Heavenly Father and my Redeemer Jesus Christ for healing

I am so thankful for my son and for his faith and true testimony of his Savior Jesus Christ. He can truly heal. We have seen miracles.

Sunday, September 19, 2010

I KNOW That My Redeemer Lives

Tonight my post is short and sweet. I am going to post a hymn that perfectly gives my testimony on my Savior. It is a song full of power. For those of you not familiar with it and would like to hear the music to it, it is song #6 on my play list or you can go to YouTube and listen to The Mormon Tabernacle Choir sing it.


I know that my Redeemer lives. What comfort this sweet sentence gives.
He lives, he lives who once was dead. He lives my ever living head.
He lives to bless me with his love. He lives to plead for me above.
He lives my hungry soul to feed. He lives to bless in time of need.

He lives to grant me rich supply. He lives to guide me with his eye.
He lives to comfort me when faint. He lives to hear my soul's complaint.
He lives to silence all my fears. He lives to wipe away my tears.
He lives to calm my troubled heart. He lives all blessings to impart.

He lives my kind, wise heav'nly friend. He lives and loves me to the end.
He lives and while he lives I'll sing. He lives, my Prophet, Priest, and King.
He lives and grants me daily breath. He lives and I shall conquer death.
He lives my mansion to prepare. He lives to bring me safely there.

He lives! All glory to his name! He lives, my Savior, still the same.
Oh, sweet the joy this sentence gives: "I know that my Redeemer lives!"
He lives! All glory to his name! He lives my Savior still the same.
Oh, sweet the joy this sentence gives: "I know that my Redeemer lives!"
Samuel Medley

Friday, September 17, 2010

Ride Your Wave

He is so happy. He and Mo have a different kind of Best Friendship connection. They just get eachother.

Snuggling with the Rengs!
This is the sign we were welcomed to on Wednesday. I love that they put Super Spence.
My sleeping baby.
After 7 months he finally discovered that you could raise the bed up SUPER high. He has been having fun with it all day!

‎"You must live in the present, launch yourself on every wave, find your eternity in each moment. Fools stand on their island of opportunities and look toward another land. There is no other land, there is no other life but this." ~Henry David Thoreau

I just fell in love with this quote. I am sure that all of us at one point in our life looked past our present opportunities to things that look so desiring on a far off island. This is the time. Cherish every single moment. Seize every moment. Your opportunity is right now. You may never have another moment, or another day to do, to say what you want to or need to. I don't know if you have ever ridden a wave. On a surfboard, boogie board, body boarding, anyway you catch it, it is exhilarating. Launch yourself. Find your eternity. Be thankful. Be happy. Do not be a fool.

Today was a fulfilling day. We had a lot of visitors. Nates friend who is a dr. at the University of Utah hospital stopped in for a visit this morning. Aunt Chelsey stopped in on her lunch break, Jena, Mo, and Nahvi came in and brightened Spencer's day. He has been smiling since they got here. Next the Reng clan came and snuggled up with Spence while watching a show. And for dessert, hours of cuddling with Gramma Cindy. What a great day spent with friends and family who love us, and pray for us, who know how wonderful Spencer is. How sweet it is!

One more thing before I forget. My sis in law, Chelsey, gave me a new motto today that I think is helpful for all, and I have even said it out loud a couple of times. I CAN DO HARD THINGS. Remember this for when you need it. Never doubt yourself. Never doubt the power that God can give you. You CAN do hard things.

Thursday, September 16, 2010

Old Soul

Here are a couple of pictures of the "red venom" doxorubicin. It is light sensitive so they have to keep it covered in a dark bag. Crazy stuff.

We took a walk to find some Playstation 2 games. He says he is smiling under that mask but I don't believe him.
Spencer asked me to take a picture of this cute baby leopard or cheetah, whatever it is, for Isabelle, because she loves them. So here you go Belle!
This is the delicious pumpkin pie I ate for lunch today. I couldn't rationalize eating lunch calories and pie calories so I just ate it for my lunch! And it was worth it!

My son is pretty much amazing. I don't mean to sound like I am bragging but I guess I am! For those of you who have watched a love one face this monster, or have even experienced it firsthand, know how awful and sick the chemo can make you. This boy of mine keeps going strong. He rarely throws up, he asks to be medicine free. The anti emetics for a lot of patients do not even help, and my Spence does not take them and still does not throw up, it is just a miracle. It really is a miracle. The doctors are amazed when they see that his spirits are high and his body is functioning healthily after having all of this venom coursing through his body. Today we did lots of homework. It feels good to be productive and to keep his mind strong. I believe that this will continue to help in a rapid recovery. His teacher, Miss Beck, if I have not already mentioned, is amazing! I asked her if she would put together all of the classwork he missed this week and she made everything so wonderfully organized. It is nice to be able to home school him and let him keep up with his class and not miss out on any project. We have had a great experience here this time. The normal unit is full and so we were unlucky enough to be put on another unit. That is hard for Spence. They do not have to same amenities as ICS and it makes it hard for him, HOWEVER, the ICS nurses come to this unit, because they all have to be chemo certified and they just take such good care of him. We have been so lucky to have Tomoko, Spencer's most favorite nurse. She spoils him and makes him cool origami. She helped him with his homework and makes him feel so great. The ICS techs (CNA's) also come down to this floor. Nicole went out of her way to make him feel more at home on this other unit. He told her that he misses the Xbox and that we ONLY have a playstation 2 system and pretty much NO choices of games. So she went to ICS and found him some of his favorite games to play on the Playstation 2. How awesome is that? Her awesomeness does not stop there either! We asked her if ICS had the first Harry Potter book. Spence has not read them yet and we are going to do it together. She could not find one there but hunted one down and found it for us. I just love this hospital. Tomoko and I were talking today about all of the cancer in both of our families. She has a lot of relatives who have died from the beast and figures that she will have it someday. She feels like she cannot be as brave and strong as Spencer is if she ever has to deal with it. She told us some stories of her experiences on the adult oncology floor and how she would just sit with patients and rub their backs and hold their hands. Spencer looked at her sweetly and said "if you get cancer, I will come and sit with you." {Tears} what a sweet boy. He told me that if it were me that he would stay with me the whole time. So filled with compassion, this child is. He is a child with an old and wise spirit, teaching me everyday what it is to be Christlike and full of hope. It is so comforting to have these people in our lives. They truly care for my son and for his comfort and well being. We feel the love and warmth of these wonderful care givers and love them all so much.
P.S. How many 8 year olds can say "upstream occlusion" and know what it means! LOL!

Wednesday, September 15, 2010

We're Baaaack

This picture looks kind of freaky but an echo is just an ultrasound of the heart. It is pretty low key and fast.
Always the jokster!

Today I miss my little Linus. Gavin carries his blanket around everywhere he goes. He is happy if he has his blanket. Spence was reading a book and mentioned Linus from the Peanuts comic and I thought, "Oh, I miss my babies at home". It has been quite sometime since I have been away from Gavin, and it is hard for me to have other people drop off and pick up Isabelle from school. I am, however, really loving this alone time with Spencer. He becomes a different person when it is just the two of us. He lets go a little bit and becomes my baby. It is hard to let your kids get older and have them gain their independence, but it is nice to know they still need their mom. We watched Aladdin today, which has become one of his renewed favorites. He used to watch it non stop when he was about Gavin's age. We both watched and sang along and it was a fun time. He built robots with his Magnext kit while I knitted him a beanie and we just talked. What a great opportunity for us to have these moments. I love them. Every one of them. I love being his mom and watching him blossom and become an incredible human being. He is strong and full of faith and there is not a better kid out there. It is hard for me to fathom what this kid has gone through in the last seven months and I was there for it all. Tough as nails. This is week 28 of 54 weeks. This is a significant week. This is the first week that we have more weeks under our belt than we have left! This is a spot I never imagined getting to. We started the day with some hydration and then on to cardiology for an echo to make sure his heart is still going strong from all of this chemo, and two chemoes. He will get his last chemo of the day for an almost midnight snack at 10:45. This chemo is doxorubicin. This is probably the monster of all his chemoes thus far. It is red and it makes his urine red. It runs for 48 hours. 48 HOURS! of poison running through his veins. Today I learned that folic acid is dangerous for cancer patients. The way it metabolizes and feeds fast growing cells (which cancer cells are) can increase the harmful cells. The body is just a completely fascinating work of art. All of those who have taken care of him today have commented on how great he looks. That is always so reassuring. It makes me happy. I will keep you updated on our stay here this week and try to have some more flowy blogs than this choppy non flowing journal entry.

Friday, September 10, 2010

Bare Fisted

I don't cry over cancer very much anymore. I don't know if it because Spencer is looking good and getting better, or because I have cried so many agonizing tears. Tonight we are watching Stand up to Cancer. I was not planning on watching it. I think I try to still put up these barriers, ignoring the big "C" word. I know the bad and the ugly of all of it I have lived it, we ARE living it, but putting a label on it makes me sick to my stomach. Cancer is a daily word for us but when other people use it for us I get tense. When I see pictures of others, especially those babies, I cannot hold the emotion in anymore. I feel the pain of the parents. Especially those who have lost their little ones. I think when people talk openly about cancer and those they have lost, I feel like I am standing face to face with it, bare fisted. I cannot let it have control of me. I think the hardest thing about it all is that it does not go away. Spencer may beat it now but doesn't mean he won't get it again. It's not like chicken pox. Isabelle may get it. Gavin, Nate, myself. We can't hide from it. It is so terrifying. We cannot be afraid everyday though. So tonight I shed a few tears, I thank God for my son and his progressing health, and I fight bare fisted next to my son as he beats the crap out of this monster.

Wednesday, September 8, 2010


I have been reminded of many things this week, and most importantly I have been able to step aside and look at the growth and the blessings that have been given to us. I am a "let's go, let's hurry kind of mom". I am always rushing my kids. I am always telling them to not touch things at the store and telling them to fold their arms. I have never realized that I was missing so many roses that smell so wonderful. I had a few moments this week where I thought to myself, "this is true bliss, i am so blessed." Target just started putting out their Halloween stuff. My kids share the same love and excitement that I do for this awesome holiday, so they asked if we could look at all of the stuff. Pre cancer Holly would have said "no, we need to hurry." Seriously, why all of this hurrying?! Instead I said "sure, let's do it!" Not only did we look down each aisle, we TOUCHED and pressed buttons on every single loud, moving, dancing, crawling, singing, booing, creepy thing we could and it was so much fun. My kids just giggled. That is when I stepped out of myself and realized how wonderful it is to smell the roses sometimes. Is there a better sound than the giggles of my own children? Other moms around me who were telling there kids to not touch, kept staring at us and I just thought, "bummer for them, they are missing out on 'a moment' with their kids." All of Target was aloud with spooky, creepy noises and I was not embarrassed even one little bit. I smiled as we left knowing we all had fun. This was a big epiphany for me. Aside from the blessings of enjoying my children, today I had a realization of how fragile and temporary this life is, and how so not important some things are in our lives. We found out today that Nate's parents neighbor, neighbors his family grew up with, passed away on Sunday. He took his own life while his family was out of town and left behind a wonderful wife and two college aged boys. It just broke my heart. It made me thankful for my life, for mortality, for the lives of my family. It made me want to hold them tight and never let go. We do not know how long we have with these people, on this earth, who love us unconditionally. Cherish EVERY moment, every chance for a hug, a kiss, a snuggle, a giggle, a moment. Forget that your husband didn't take out the trash or that he doesn't close the toilet lid or the shower curtain. Remember that he works hard to provide for your family, that he is a wonderful father and he is a great kisser. Remember how you fell in love with him and the moment you knew you wanted to spend eternity with him. It is never too far to go back. God is a God of miracles, of love and of mercy. Take time to smile at those around you, not to complain that the woman in front of you at the store is using 100 coupons, or growl that your son got granola bar in the carpet. Embrace each moment. Eat chips and homemade salsa and watch LOST until 3 in the morning with your honey. Be grateful for all that you have. If you aren't careful you could miss out on the blessings that even trials bring you.

Tuesday, September 7, 2010

Little Faith

Today was a good day. Spencer came home on Sunday afternoon with Nate from their 5 day chemo stay. He did not throw up once this stay and has continued to stay pretty healthy. He threw up a couple of times this morning but nothing he couldn't handle. This kid is a pro. His counts on Saturday were pretty low with only the surety of them getting lower after chemo. Because he has been feeling so well he really wanted to go to school. I told him that he would have to wait until his counts came back on Tuesday morning but most likely since his last numbers were lower than what they need to be to go to school that it was not probable. In our family morning prayers Nate asked that Spencer's numbers would be high enough to go to school. I was thinking "yeah right". Oh me of little faith. When I called in to get his numbers and he told me that his ANC was 2.0, I kept asking, are you sure that is from today's lab? He laughed after like the third time and said "yes, I am sure." I told Spence that his ANC had to be higher than 1.2 to go to school but since it was 1.0 there was no way. Well boy was I wrong. When we got to the school cute Miss Beck said "He is here?! He really is Superman." That is my Spence for you, always beating the odds, always strong! I thanked my wonderful husband for his faith this morning in his prayers. He said he honestly did not remember praying for that, and that it must have been inspired. Well I am thankful he is inspired! Spencer enjoyed a great half day at school only two days after a five day chemo!

Saturday, September 4, 2010


Almost better than talking to Spencer myself is listening to Isabelle and Spencer have a phone conversation. I cannot describe the immense happiness and overwhelming love I feel when I hear "I miss you" and "I love you" and "thank you for..." between these two. What a wonderful thing to tangibly feel the love your kids have for one another. This is one of the many blessing we have received from this whole situation. My kids do not take each other for granted. They still have their sibling rivalry but there is an undertone of love, desperation almost. For such little bodies they have these incredibly huge hearts and understanding of real life. It makes my heart ache that they have to know such sorrow and comprehend life more than they should have to, but I am thankful that they have learned a real love for one another. These are feelings that I just cannot explain fully.
Isabelle started kindergarten on Friday. Nate has my computer and my pictures are not uploading to this one so I will post them when they get home (tomorrow! yay!). It was hard for me to send her off and I think one of the reasons was because Spencer was not there. This was never in the plan. He was supposed to be there. He is supposed to protect her and make sure she is safe. He is not supposed to be in the hospital. One of my greatest friends, Ally told her sick daughter Lizzie "Men plan, God laughs". Lizzie went home and relayed the quote to her dad in her own words "People plan and God says 'you don't know anything just wait to see what I have planned for you'". What an insightful little girl. These kids, they are special, they know. Maybe these things were not in my game plan but then none of the blessings that come with Gods plan would be ours either. I loathe cancer, I dread watching my children suffer, and I despise being away from my family but I am thankful for the intense and magnified love I feel for them and for my Savior. How lucky I am.

Thursday, September 2, 2010

Go! Fight! Win!

Today is day 2 of 5 or inpatient chemo. Nate said that Spence was hallucinating throughout last night. It is a possible side effect from one of his chemoes, or it could have been from his anti-emetics but he is used to the BenPhen, so I am not quite sure why. It is hard to be away from him when he is there but he is getting so used to things that I know he could do it all on his own if he had to. He has been feeling well so far and I think they are hoping to advance his chemo. I appreciate Nate staying there, especially because Isabelle's first day of kindergarten is tomorrow, and I would be heartbroken to have missed it. Tonight was the first Utes game of the season. As you can see Spence is all ready in his Utes attire for a FREAKING AWESOME GAME! It was a close one but the Utes are starting off the season proving their spot in the Pac 10 or 12 or whatever we are calling it now! Nate was able to go to the game so my sister sat with Spence for the evening (thanks Britt) and took these pictures for me. It is hard to blog when I am not there, and you may get some "quality" cell phone pictures this time around! I am sad that he is missing school but happy that he continues to fight this monster! He loves being at the hospital because he loves the nurses and honestly I think he enjoys playing video games all day long. I guess the unit got Lego Harry Potter on xbox 360 which he has been longing to play and has not done anything else! It is pretty cute. Nate did work with him on math for 3.5 hours yesterday. He got it all done, and he will take a spelling test tomorrow. We are really trying to keep up with the academics. I miss my boys but know they are off fighting and conquering and I cannot wait to hug them both! Go Utes! Go Spence!