Cytoxan

I am panicking just a bit. We are here in the Oncology clinic for our new round of chemo. We will have Vincristine like normal, but then we begin Cytoxan. I talked to a friend who has taken Cytoxan and didn't have any good things to say about it, so I asked the Dr. what the common side effects are. Vomiting, neutropenia, bladder infection (not like a UTI ). I am so worried about it. He told me to call right away if there is blood in his urine. Neutropenia means no visitors at home. We are going to start on a feeding tube tonight but I am worried about his tummy now with this round of chemo. Panic, panic, panic! There is a little boy walking around with his dad while he gets chemo, he is probably two years old at the very most. His dad has a Team Kaden shirt on, fighting against Leukemia. It is just so not fair that these babies have to suffer so much. I just want to scream and kick, and punch, and stomp and spit and cry. I hate all of this. I hate it for Spence, I hate it for our family, I hate it for all the kiddies going through this and their families, I hate it for everyone that has to deal with this. It is just not fair. I have been pretty positive this week but as I sit here and am given all of the negatives it is hard to smile.

Scattered

Spencer's new Wimpy Kid shirt!

My fabulous new Lolly Bag! Thanks Melanie and Thank you Hillary and Dale!
Today we had radiation, and I took Isabelle with me. I planned on surprising the kids and taking them to see Diary of a Wimpy Kid after treatment so I needed to take Belle along for time restrictions. I let her come into the room and watch Spencer get all "hooked" to the table. I think she was pretty intimidated which is not normal for her. As we were leaving the hospital my friend Melanie, who makes the Lolly Bags called me to tell me she had a bag for me! Yay! and she said that she too was in the parking lot of the hospital! So I met her around the corner and she gave me my darling bag. We headed on to the theater and enjoyed a movie together. We all laughed. Spence had read the book a few weeks ago, all on his own, so he really wanted to see it. I figured we might as well go and see it before we start chemo tomorrow and counts go down. After we spent the evening at my dad's Spence and I went to Target because the Wimpy Kid shirt he wanted was on sale there, so we went to check it out. While we were there I had another kind of out of body experience. It is almost like the story A Christmas Carol by Charles Dickens when Scrooge watches the present without being noticed. I felt like we were slowly flying through this world watching others as we were passing without being noticed. It almost feels like the whole world is continuing to live in a fast pace while our whole world is put into slow motion. I watched brand new parents picking out newborn clothes and laughing with their new baby, moms with daughters picking out Easter dresses, Newlyweds, teenagers, full fledged families and all I could think about was cancer. I kept thinking that just two months ago we were living what we thought was a normal life. I kept thinking, my son doesn't get to go to school and show off his new shirt, but he can show it off to the nurses in the Oncology unit. It was a very surreal experience and I just wanted to get home to cuddle with my boy. He has been feeling pretty well today, he has been very sarcastic, so I know he must be feeling well! Today is just one of those days that I want to kick and scream and pull my hair out. I am just mad that he has to go through this. During the movie I felt like we were having a moment of normalcy and then the credits came on and the lights turned up and I started crying. I was watching all of the other moms leaving with their healthy kids and thinking "man we still have cancer". I am sorry that my words and thoughts are not flowing tonight. I feel like they are all over the place. Spencer said something really funny today. I heard him tell my stepmom that "daylight savings ruined my life" and I said " it ruined your life more than your tumor?" and he said "well my tumor got me a DS and an iPod Touch". OH boy! I guess you have got to find a silver lining in all of this mess huh?!

The Eye of the Beholder

My dear Spencer,
The moment I found out about your existence my soul changed. I have never wanted anything more than to be your mom. I pray for you. I cry for you. I love you with a love so intense that even the very depths of hell shake and the angels in heaven rejoice. You are my epitome of beauty. Your freckles, your (half) smile, your eyes filled with so much trust, your sweet bald head. YOU are SO beautiful to me. I wish that I could take every single pain away. I wish that you could close your eyes and awake to a happy day. I wish that I could protect you from everything painful. You have a strength and a love of God that is beyond comprehension and I only hope to be half of the person you have become in your almost eight years by the end of my life. I know how very sad you are to lose your hair. To lose your identity. To lose your strength. You, however, are not Samson. By losing your hair, you gain strength by conquering your fears and moving forward with an immovable faith. My sweet, sweet son, you are beautiful. You are loved. You are strong. Keep fighting. I will continue to hold your hand as you battle in one of the most terrifying wars of your life. You will always be my soul changing beauty. I love you so much.
Mom




This picture was taken by Jen Fauset of Fauset Photography. Thank you so much for documenting these intimate experiences for our family. You are amazing.

Forward

We were given great news today! WE DON'T HAVE TO BE IN PATIENT THIS WEEK! He is starting Doxorubin, Cytoxan, and continuing Vincristine, however, because of radiation we are not able to do the Doxorubicin this week, which is the "long" chemo and the reason to be admitted. He will still receive Cytoxan and Vincristine but can be given at the Oncology clinic and will only be a handful of hours! I am hoping, too, that because of only one day of chemo this week, he can maintain his health and continue to get stronger before we go in for five day in patient chemo in a couple of weeks. I am trying to get him to eat little bits here and there and told him I will make him some mashed potatoes tonight. Hopefully he will try a few bites. After radiation I called the lab to get his results from this mornings draw and all of his counts were good so we decided to stop by his school and say hi to all of his classmates and the wonderful office girls, of course! He was very quiet and I think his friends were shocked to see him in a wheelchair (he is still so weak, too weak to walk too far), but once they all got talking it was awesome. They are all so aware of him and what he is going through and I am just so thankful that he has wonderful friends supporting him and shaving their heads. I forgot to get a picture at the school but here is one that the principal took of all the kids and staff who shaved their heads, minus the kids who were off track (we are in year round school).
We then went to the library to take back some books that were long overdue because they were due right after Spence was diagnosed and I have been a little preoccupied. I explained to her why they were late and asked if she would waive the fee and the librarian looked at Spencer and said "are you Spencer?" She said she has seen his flier and she even went to the end of the event last week. So super cool. She was very kind and wished us good luck! I am very tired today. I am still trying to catch up on sleep and am planning on checking out early tonight! I wanted to leave on a different note tonight. My friend Allyson, whom I met through our ordeal over blogs and facebook, has a little girl, Lizzie, who is 8 and is also suffering with unusual health problems. She has some kind of blood disorder that makes her very sick and puts her in the hospital often. She has had many surgeries and lots of testing but they still are not quite sure what is wrong with her. I ask you all to pray for their family and for their peace, and for Lizzie's comfort. I ask you to pray that the doctors will be inspired to run the right tests so that they can move in a forward direction towards her recovery. Your prayers have helped our family so much and I am hoping that your love and faith can bless their family as well. I love you all so much and am so thankful for all of your thoughts and prayers!
This is cute little Lizzie (hope you don't mind Ally)!

Catch Up

I have returned from a much needed mental and emotional break. While it was nice to have a break from my blogging "obsession" I now have a lot of catching up to do. I will start from this moment and backtrack. It may take me a few days to get all of it in but we will get there! Spencer will be in patient once again on Wednesday for his more chemo. This is where things are going to get intense (because they haven't been already). The chemoes he has been taking have been "mild" comparatively to the ones he has been given thus far. I cannot even begin to imagine this. I am dreading the side effects of these new chemoes and hoping that his body miraculously holds up even better than it does with Irinotecan. He will become severely neutropenic (immuno-compromised) which will result in lots of hospital stays and no visitors. We will be kind of lonely until about August. We set up a Skype account and need to get that going so that we can have some form of the "outside world", at least when we are in the hospital. The majority of his treatments will be in patient so we will be spending a lot of time there.
Each day is getting better for Spencer this week. We returned home on Wednesday and the first few days were pretty rough. He is begging to feel a little more normal and is back to playing video games and practical jokes on his brother and sister. The doctors have him set up on TPN, total parenteral nutrition. It provides all daily nutritional requirements intravenously (I.V.) to those who cannot intake food. Because his poor little GI tract is so sensitive he was not able to respond positively to the tube feedings last week in the hospital. The TPN is supplying him with the nutrition he needs to heal his body so that he will be able to try tube feedings again and then hopefully normal food. He did, however, eat a few jelly beans and a butterfinger egg this morning. I told him that he has to drink a half a cup of a smoothy tonight. We want to get his belly ready for tube feedings but introducing little bits of gentle foods into his diet. The TPN set up was pretty intimidating at first. I have to inject vitamins and Prevacid into the big bag of fluid, spike the bag for I.V. set up, hook it up to the pump, set the pump, purge or prime the line and then hook it up to his central line. It was scary but our wonderful home health nurse, Dylan, got us all set up! He even came the next day to help. I am feeling a lot more confident about it and hope that we will not have to do it after this week and just work on tube feedings or better yet, regular food! Here is a pic of the TPN set up. It is carried around in a backpack for convenience.We have had a busy weekend and hope to get pictures all posted in the next few days. Uncle Owen, Aunt Theresa, and sweet Kanan are in town and so we have had a fun weekend. Owen, my brother, wanted to wait to shave his head until he got here to let Spencer do it himself. We planned a little family head shaving party to shave Spencer's head as well. He was so emotional about losing the last few hairs remaining that he didn't want to do Owen's and cried throughout his own shaving. I had originally expected the whole head shaving experience to be really emotional but because he almost had not hair left it was kind of a relief! He looks healthier with a completely bald head than a patchy hairdo. Jen Fauset of Jennifer Fauset Photography
graciously offered her services to our family during the "shaving of the heads". Jen was one of the fabulous photographers at our fundraiser and you can see her pictures on the Super Spence fan page I will post the awesome pictures on the shaving as soon as we get them back. Thanks Jen! Here are just a few from my camera of the evening. My little nephew Eastie Beastie (Easton) turned four this last week and had a birthday party and Jumpin Jacks. I thought it would be a fun time for Belle and me to enjoy. It was awesome, and so funny to watch the kids, and the adults flying all over the place. I have pictures from that night as well but not with me so I will post those soon, as well. Today we were able to enjoy some extended family time to celebrate the homecoming of my cousin Cory. He just returned from an LDS mission in Houston, Texas and it was so great to see him again. I had some great conversations with other women who are dealing with cancer in their families in some way or another I they gave me some great insight that I will share later with you. This blog is a little bit more informational and the insight is more emotional and spiritual so I will provide this in a more appropriate blog posting. I am so thankful for my family and the fun weekend we were able to enjoy before things get even more intense this next week. I will continue to play catch up on the blog this week and get things rolling again! Please pray for Spencer's appetite and tolerance of food. Please pray for him to have the strength he needs to begin his "hard core" chemoes! Pray for his happiness!

A Quick Update

I am so sorry to my loyal readers who are anxiously awaiting updates on Spencer. I am still trying to recover from our ten day hospital stay and am working up the energy to post on the last few days. I will say that Spencer is about the same. He is still experiencing intense tummy pains which I believe is mucositis (mouth sores) which can cover from mouth down throat, in GI tract and out the bum. Luckily his are not that far but I think they irritate his belly. The only thing really to ease the pain is "magic mouthwash" (the actual name on the prescription) which consists of Lidocaine, Maalox and Benedryl. He WILL NOT take it. He does not like the taste of it so I went to the pharmacy tonight and got a new bottle with a watermelon flavor, maybe that will taste better to him. He has been a trooper today trying to smile as much as he can, trying to fight. I love that guy. We ask for special prayers to make his tummy pains go away. We are all set up at home with TPN and I am learning how to do new things everyday, which is very intimidating but kind of fun at the same time. I will gather pictures and and post more tomorrow. I just wanted to give a quick update during my little intermission! I will have more energy tomorrow! Love you all! (Don't forget to pray for tummy pain to go away!) Thanks!
P.S. Here is another happy thought. My bald baby boy! He is so happy that his brother is home now!

Short Intermission

We are finally home, for a few days at least. We had a pretty busy day but I am so exhausted and I need to take a little break and enjoy being home. I will blog about our day tomorrow, probably in the evening. Before I go to bed I wanted to again thank all of my wonderful friends who participated in our Super Spence vs. Cancer Benefit last Saturday. My friend Amelia, who was one of the photographers sent me her pictures tonight. As I was looking through all of the pics I could not help but be overwhelmed once again by all of the immense love that was shown to our family and my baby boy. I will be back tomorrow evening. Loves.

These Are a Few of My Favorite Things

Here is just a little preview in some of the pictures from the event. Here is a link to see some more but a few more THOUSAND are coming! I just wanted to share these specifically because of the deep love I have for my "favorite things".

Autopilot

I am sorry that I have been lacking on pictures. I feel like posting pictures would just make you more sad. He looks so weak and I almost feel bad for taking random pictures of him in his vulnerable, fragile state. Today we had to be transported again to radiation at LDS hospital. It is really hard to see him the way he is but I am now getting used to all of the stares as we wheel him down the hall. I try to imagine what other people are thinking, or what I would have said only a handful of months ago if I was watching a child like him. There are so many emotions that go through your mind when you think of your child being "that child". Today though, seemed a little easier as we were wheeling our way to the transport van with all glances on us. Is this what the "new normal" feels like? The anger is beginning to subside, for now at least, and I feel like I am in survival mode. WHAT DO I NEED TO DO TO TAKE CARE OF SPENCER? My body moves as fast as it can to get to where it needs to be. I am tired but so aware of him and even aware of the other kids while they are away from me. I am hoping that RSV and Flu season ends shortly so that they can be here more. I love it when our family is all together. Spencer misses them so much too. I am hoping that being around Belle and Gavs will help him heal. I think he will feel better being around them, making him whole. Family heals. I am so lucky to have such a wonderful one. Spence also had to have an ultrasound on his belly today because it is still causing him a lot of pain. They thought that stopping the tube feedings would help, but to no avail. They were worried about inflammation or infection. The ultrasound confirmed that gas and diarrhea are the culprit. Poor guy his little healing gut is full of trapped gas. The doctors of course were happy to hear that there are no other complications, and because his other labs look pretty normal we will most likely be able to go home tomorrow. Oh, sweet home! One of the doctors I talked to agreed with me that being home might actually make him feel better. Oh to be home! To be with my babies even if it is only for a few days until we come back for in patient chemo next week! Tomorrow I will learn how to keep him fed through his I.V. and all of that fun stuff. I think our home health nurses will come over as well and get us all set up with that. I wanted to tell you a quick story about Spence. When this all began I related the story of Job to him. If you are not familiar with the story of Job read it in the Bible! It's a great story. I told Spencer that Job was so righteous that Satan asked God if he could test him because he was sooo good, and he was granted permission. No matter what trials were given to Job he still loved the Lord and still kept his commandments. He lost his family, his home, his livelihood, and was struck with disease and he still remained faithful. In the end the Lord blessed him twice over and he lived a long life in happiness. Well I was telling Spence that God must really believe that he is so faithful that He has given him this special trial that he will overcome and then he started to cry. "Mom, I don't want to get as sick as that guy from the Bible". My first and only thought was how amazing this little boy is to not think that he already is as sick as Job, if not more sick. He and his faith blow me away and I am thankful that he is such a special little spirit and that I get to be his mom.

Raw

It is time again to speak of my husband. He is not a very emotional person and this whole experience has been really hard for him. There have been so many rough moments in the past two months but many blessings have also been given. One of these many blessings is the renewed "crush" I have discovered that I have on my sweet husband. Marriage is a hard road that has to be constantly worked on and as life "lives" those fun feelings sometimes become hidden. Watching my husband soften and sweeten as he breaks down all of the manly walls he has built makes my heart beat faster. Last night as he stayed with our sweet boy, he called me sobbing. He helped Spencer bathe and his frail little body got the best of his readily available emotions and he poured out his sorrows to me. "He looks like a sick, old man" he said. "I hate this" he continued, and cried. It is a very spiritual thing to experience raw emotion with someone you love. It can join your souls and your hearts and create a bond where no words are even needed or even understood, for they cannot properly express the moment. I love you my wonderful husband. I love your new found tenderness and the commitment you have always had for our family. I love your deep rooted faith and your raw sentiments. I am lucky to be able to walk this journey with you. Thank you for holding my hand and carrying me along.

T-Shirts

If you are local (utah, salt lake countyish) and wanted to order a shirt but had not had a chance to, I have been informed that we still have some shirts here before you order one online. I was asked to blog the sizes we have left over.
Adult sizes:
L-22
M-27
S-17

Child sizes:
L-22
M-12
S-17

Our bracelets sold out but you can get those at www.teamsuperspence.com
We are so thankful to all of you for your love, prayers and support!

I'm Back!

I am back. I took a much needed break from the hospital thanks to my wonderful husband, and spent the day with Gavs and Belle. Nate spent the night last night and stayed the whole day with Spence today. He is wonderful because it was a crazy day. The doc decided that Spence should not miss out on any more radiation treatments so they had to transport him by van, to a nearby hospital for his session. They are hoping to get him out in the next day or two {hallelujah}! I was able to get a bunch of laundry done, spend some awesome time with my kiddies, and have some lunch with my Melly. It was nice to do all of these things because once Spence comes home we cannot have any visitors because of his neutrapenia (being immuno-compromised). It is going to be like this probably until the end of the summer because his up coming chemoes are intense and right on top of eachother. It was definitely a nice day today but I am happy to be back with my boy! I hope to have another enjoyable night with him! I am still working up the energy for a big huge post about Saturday. I cannot say enough thank you's to all of you! We are still overwhelmed by your love and generosity!

Happy Thoughts

These pictures are my happy thoughts for the day and I thought I would share them with you just in case you needed some too! My dad sent me some pics he took of my Gavs last week at his house. I guess he enjoys some good music! Look at that face. So hard to resist!

Awake

I am really tired. I cannot remember the last time I slept. I average about two hours of sleep a night and those are not even necessarily in a row. I thought tonight, or technically last night, would be better. Being so exhausted from the days events and actually laying my head down two hours earlier than normal, this nights sleep was promising. Who was I kidding? Beeping, lab draws, meds, and diarrhea all played a part in our night, as they do every night. Why should tonight be any different? The nurse, who is super sweet, must have forgotten that I asked for Immodium to be given around the clock. He has been off of it for a few days now per pending C.Diff results. Negative results were given this afternoon, so now his poor diarrhea could be controlled again, but NOT if Immodium is forgotten. It is funny how all nurses are different. Here on this unit they are all so nice and sweet but some are "on top of it" more than others. I know what it is like to work in the hospital. I know what it is like to work night shifts. Tonight, I am a little more frustrated. Spence has already had a "crappy" day, {no pun intended} and the last thing he needs is unnecessary diarrhea and interrupted sleep. I just want this to all go away, and I just want him to come home. I want him to be with our family. I want to be with our family. I want to sleep for many, many hours in a normal bed. I want to go home.

BLESSED

I am overwhelmed by emotion, love, support, gratitude, etc., etc. I am too exhausted to blog about this incredibly emotional day but I wanted to express a smidgen of my appreciation to THE MOST AMAZING friends in the universe. I know we all think we have the greatest friends, but I REALLY DO! Thank you all of our hundreds and hundreds of friends that came to support our sweet Spencer. It was extremely hard, and the most emotional part of our day, for him not to be there, and stuck at the hospital. There were so many prayers for him to be there and we know that the Lord has heard them all but for some reason He needed to keep Spence safe and healthy at the hospital. PLEASE IF YOU SHAVED YOUR HEAD OR HAVE A FAMILY MEMBER WHO DID SEND IT TO SPENCER'S EMAIL POSTED ON THE SIDEBAR! We would like to have as many "bald headed" pictures as possible. Once again we are overwhelmed by your love and support and when I can recuperate from the day I will blog all about it. We have thousands of pictures from the day and are still trying to figure out how to share them with you all. Again, thank you, thank you, thank you. You are all truly amazing and we are blessed to have every single one of you in our lives.

Improvements

Potentially good news! The chief resident came and talked to us today and said right now things look good for his discharge tomorrow morning. We are trying to stabilize his electrolytes, which she thinks can be handled by the morning. He is getting a blood transfusion today, because his Hct is low and they believe that will lower his heart rate and fix a lot of the things. Transfusions are usually an outpatient procedure so doing this should not affect our discharge. I am hoping to see a lot of improvements from it! His feedings seem to be going pretty well now that they changed his tube into his Jejunum. His ANC and PLTS have actually gone up a bit and his tummy pain is subsiding. Things are looking up for his appearance at the "event" but we still need prayers! Every prayer helps!

Midnight Snack

Things are looking up for the moment. We had a very nice evening together. We talked, we read scriptures, we played with his iPod Touch, he told me he loves me several times (i love that) and told me that I am the best mommy ever. It was an evening I will never forget. We cried together and we laughed together. Then around 11:30 p.m. he asked if he could have a banana, and then asked if he could walk to get it! He has not been out of bed since we have been here on Monday! Your prayers are working! We took a walk to the nutrition room and grabbed a banana and a fruit punch. His tummy hurt a little from the exercise but he decided he wanted to watch Planet 51 (miracle #3,4 and 5 today)! His Na+ is a little low so they will give him an NS drip. Keep on praying!

Ranting

I miss my babies. I haven't seen them in a few days and part of me is missing. I am over exhausted and full of sadness but no tears will come out. My heart is crying, my stomach is crying, my lungs, my muscles, my veins. Every inch is crying inside without sparing a tear for my eyes. A tsunami inside ready to attack and all I can do is sit and ache and watch and long for. Long for health, long for my babies, long for cleaning my house, taking kids to school, going to the park, long for my family, long for my life back, our life back, my son's life back, begging for his life, pleading for his comfort. Crying, aching, watching, longing, begging, pleading.

Pit

I am eating dinner, but I am not very hungry. I have this pit, this anxiousness in my stomach that will not go away. I am having another "why?" moment. The intense pain in his abdomen has not subsided, so they replaced his NG feeding tube with an NJ (nasojejunal) tube. Instead of going through his nose and into his stomach the tube goes through his nose directly to his intestines. Hopefully this will ease the pain. I do not mind being here where he can get all that he needs I just wanted so bad for him to be able to go to the Fundraiser on Saturday. Watching him suffer like this, hearing him call me in his Versed induced sleep, it tears me apart. I feel helpless as I sit here alone in the hospital for another day, while he cries in his sleep. Does he dream about his pain? Does he dream about heaven? Does he hurt? Is he scared? Why is he crying? Why is he calling my name? I am right here baby. I am always right here.

Better

(He even has energy to smile today!)
His K+ (potassium) levels are back up! Yay! He had one bout of diarrhea this morning, but not until 6 a.m. so he got some decent sleep. The doctor came as assessed his tummy while he was sleeping and he did not wake up from the pain, reassuring her. When he woke up he said he felt well and that his tummy didn't hurt (miracle #1 today). When the nurse did her assessment his tummy hurt only when she pressed on it! He asked me to order a Coke for him so that he could stay awake. This is the first thing of any kind he has felt like eating or drinking in DAYS (miracle #2)! I just hope that the carbonation is not too strong for him. Let's all just keep praying that these miracles continue throughout the day and that we can go home and attend the wonderfully huge "benefit" our friends have spent many long hours on. I am feeling optimistic this morning and praying for more miracles!

A Turn for the Worse

Things were looking up today and then took a turn for the worse tonight. I am going to try to give you all a quick physiology lesson so that this blog makes sense. Okay, so we all have blood. We have red blood cells, or erythrocytes, and white blood cells, or leukocytes. Red blood cells (rbc) carry oxygen to the whole body, white blood cells (wbc) help fight off infection. The most common type of wbc are neutrophils. They consist of 50-60% of all wbc and are the first responders to infection. The normal range of neutrophil counts is 1500-8000 or 1.5-8.0. When you drop below 1500 you become more prone to infection or "neutropenic" because you are lacking neutrophils. 500 or 0.5 is then becoming severely neutropenic and now immunocompromised. Okay, next is hematocrit. The hematocrit is the measurement of the packed rbc's. As we mentioned before rbc's carry oxygen, so a low hematocrit can cause low oxygen levels and fatigue. There are many different factors in hematocrit levels but a normal range would be from 35-45%. When the Hematocrit (Hct) drops into the low 20's a transfusion is necessary. Next, platelets (PLTS). Platelets are actually fragments of the cells in bone marrow. They are like little spikey ovals that form a plug, or a scab when you bleed. When your PLTS are low, your ability to scab is low, thus, causing more bleeding. PLTS counts need to be between 400,000-150,000 (read like 150-400). Now that we have blood out of the way lets discuss electrolytes for a moment, the two most important being Na+ (sodium) and K+ (potassium). Na+ should be at 137-146 and K+ 3.4-4.7. Now that we have all of that out of the way I will report his first set of "naughty" labs. Like I previously mentioned, things got a little worse tonight. His K+ levels were considered "critically low" at 2.9. The ordered a double dose of a K+ rider to go over a four hour period through his central line. His HCT was 25 slowly creeping toward transfusion levels, PLTS were 187, which is normal (hurray for one normal lab!), and his ANC was 0.5 (500) bordering on severely neutropenic considering him immunocompromised. He had a fever of 38.6 c (101.48 f) which gives an alarm to infection especially now being compromised. I had a few moments of panic but it soon subsided as the nurses, and resident quickly responded to him and within minutes he had Zosyn (antibiotic) running through his line. His feeding was stopped, and more morphine given to help the intense pain in his "gut". His little tummy looks swollen. It is a normal side effect with neutropenia. He is finally asleep, and soundly it may seem. It is so hard to watch my sad sweet little boy go through all of this {crap}. He has had the K+ rider going for a little bit now and his heart rate is FINALLY dropping. It is in the 120's now. It has been since Monday that it has been in the 140-155 range. The morphine is making him talk in his sleep and he apparently, was just petting a dog! PLEASE KEEP PRAYING. We need as much faith and as many prayers as we can to make this go away! At least take the pain away.

Scream

It is seven in the morning. I have not yet gone to sleep from yesterday. I want to scream. Diarrhea all night long. All night long. His heart rate is still high, his electrolytes still low, his diarrhea still coming. I want to scream. Once again, he said, "this is the worst day of my whole life". His weight was back up last night but after all of this "outtake" I am afraid it will be back down. Make my baby better! {scream!}

Heartbreaker

Does this break your heart? Because it sure breaks mine.

He is actually doing really well. He has been writhing in pain over stomach aches the last couple of days. I think it is because he has been so hungry! Now that the feeding tube is in, the stomach pain is gone! Yay! The nurse, Caitlin, who is FABULOUS, came in this afternoon and asked him how he was doing. It is the first time in DAYS that he responded "good". Oh, this makes me so happy! He really needed this tube! He will most likely have to have it in for atleast two weeks, which is when we will be in patient again for his next round of chemo. They will then reassess him and decide if he still needs it! I forgot to mention earlier that Gavs is TEN MONTHS old today! He is only in the 3rd percentile for weight (just like his sissy) and 50th percentile for height. He now has two teeth and is crawling around like crazy. He gets up on his tip toes and hands like he is trying to stand up or doing a push up. It is hilarious. He blows bubbles, on purpose, with his spit (gross) and just laughs. He is just the funniest guy ever and we are so happy that he is in our family.

Tubalicious

So it finally came down to the last resort. This morning we had to place an NG (nasogastric) tube so that Spencer could get the calories and nutrition he needs. He will have to have it indefinitely. He will have to have it at home. He lost about 2 lbs just over the weekend and his clothes and his underwear are literally falling off of him. His bones are protruding. We were supposed to go to Make-A-Wish today to make his wish but we will have to postpone it. We are hoping to go home tomorrow but it mostly depends on how he is feeling and how well his body is doing. He pretty much screamed when they placed it. They put the yellow tubing up his nose and then down his esophagus and into his stomach. It really is such a great way to get nutrition in and one of the many things that excites me about the medical field. He is not happy about having to have it but I think he realizes that he NEEDS it. A few minutes after they placed it and got the formula going through the tube, I was trying to lift his spirits and I told him that our friend left stuff to make strawberry shortcake. I asked him if that sounded good and he looked at me with his expressionless face and said "I am already eating." I love this boy and am glad he can still crack jokes even if he does not feeling like laughing.

More Random Acts of Kindness

These are a few of the goodies I came home to last night. My awesome friend Laura left us flowers and treats, Heather B. this awesome CANCER SUCKS shirt, and my awesome cousin who left this Pride and Prejudice, the good one, on my doorstep! Love you girls tons! Thanks for brightening our night!

The Best Day Ever

Okay, I am now feeling up to posting about our fabulous day, last Friday. We started the day with radiation. We had a little bit of time between radiation and chemo to stop by labor and delivery (my previous "place of employment") because the lovely ladies there had 11 frozen dinners for our family to take home. We were greeted by beautiful girls and cupcakes! We chatted for a bit and took some pictures and then we were off to chemo. My friend Heather, a huge BYU fan, set up a surprise visit for Spencer and Nate with Coach Wittingham, Morgan Scalley, and Brian Johnson from the Utes undefeated football teams. Heather has an awesome blog all about it HERE. Please read her post it is awesome! She is also the fabulous photographer and put together the super cute collage! The boys were so excited! Like kids in a candy store. Coach Wittingham was so incredibly nice and Scalley and Brian made him feel like he was their buddy. They gave him a signed football and invited him to practice. It was an awesome surprise! THANK YOU HEATHER WE LOVE YOU SO MUCH! We went into chemo feeling pretty good! After chemo we headed home because Spencer's "bestest" friend in the whole world was coming over that evening. Gabe and Spence have been best buddies since they were born and we don't get to see him very often. Gabe and Sophia (his sister, who is Belle's BFF) are just the sweetest friends in the whole universe. Their mom, Rachel, and I have been friends since we were little girls and it has been fun to have our kids grow up together and love eachother so much. There is a special bond there. They came bearing gifts. Gabe made Spence THE most awesome pillowcase and put together a cool photo album of them throughout their seven almost eight years. He also got him another Ben 10 lego! Belle got some Polly Pockets (I feel a new collection coming on, and I got some beautiful tulips and Dr. Pepper! Sophia and Isabelle started right where they left off. It's like they saw eachother yesterday. Sweet kids. We ate pizza, drank rootbeer, and watched a movie. Spencer, unfortunately, was not feeling so great and wanted to go sleep. We had a fabulous day and we are so thankful for all of our friends who helped make that possible!

Lost

I randomly came across this old picture tonight. It is two years old. Spencer was in kindergarten, he was five. We were at a birthday party for a friend of ours at Chuck E. Cheese. I walked in with my two kids and Spence ran ahead of me. I put our stuff down on the tables where we were all gathering and realized that Spencer was nowhere to be found. I tried not to panic and to just be reasonable. He must playing a game, I thought to myself, as I was forgetting to breathe. No Spencer. I looked everywhere, now running, and starting to yell out his name, I searched the bathrooms I thought about an episode of "Cold Case" that I didn't want to remember, my heart raced. I asked all of the employees if they saw a five year old boy with really spikey hair. Nobody had seen him. They say that when your heart stops you are dead, somehow I am still alive. Finally, about five minutes later (that is about an eternity to a panicking mother) another customer said, "I think there is a boy on the slide". It was one of those winding tunnel slides where you cannot see inside and he had been hiding inside {and breathe}. I just grabbed him and hugged him like there was no tomorrow. The thought of losing my child makes my heart stop. That was two years ago. I have had two more years to fall in love with this wonderful child and here I am faced with the same dilemma of losing my Spence. Everyday my heart stops beating. Everyday I remind myself to breathe. Everyday I hug him like there is no tomorrow.

"The Worst Day Ever"

Someone recently told me that cancer is not the worst thing that can happen in life. I have two things to say to that: tell that to my son, and maybe it isn't but watching your child suffer so intensely, is. Today is the worst day we have had. Crying, diarrhea, throwing up, crying. "This is the worst day ever" he cried to me as I wiped the diarrhea from his legs because he was too weak to wipe it. He can't even stand without help. I just keep thinking what am I going to do when there ARE worse days than today? There have been so many times in his life that I have said "Spencer, settle down", what I would give to be able to say those words to him. He can't even walk without screaming. He has lost even more weight. He just right now said to me "I wish Jesus was right here on the earth right now" "Why, honey?" "Then he can come and heal me." "He is alive baby, all you have to do is close your eyes and ask him to heal you." "I have lots and lots of faith mom". I wish that I could have his faith. His lips are the same pale color as his face and his hair is almost gone. He looks like a cancer patient. I am sitting with him now in the oncology clinic. Dr. Afify came in and was not happy with the way he looks. She panicked me. She told the nurse that she didn't want a regular fluid bolus drip, that she wanted it set to gravity so that it gets into his body faster. She said he needs it right away. We will skip radiation today and be admitted here for at least the day so that we can "perk" my dehydrated little boy up. He was trying to sleep and she shook him awake. She was worried. When the doctor is worried that is not a good sign. We decided that his outake (diarrhea, vomit, urine) hasn't been horrible, it is his intake (eating,drinking) that has not been so great. I looked up "NG (nasogastric-nose and stomach) tube insertion last night and it is not a fun thing. I sooo don't want to have to watch him go through that but he needs to fight, and he is not fighting. He needs as much nutrition as he can. If they are going to admit us then I may ask for it to happen. Please pray for my guy. Pray for him to eat. Pray for his comfort. The nurse just came in and said his lab results look good. He is a little dehydrated but his blood counts are fine. He is just feeling cruddy.

Once Upon A Time

I promised a refreshed day with a blog about our fabulous yesterday but my dirty bathrooms were calling my name! Lucky for me my Saunie was inspired to stop by and take Gavs from me. Nate needed to run some errands and I NEEDED to get some cleaning done. I was able to get both upstairs bathrooms cleaned, and both the kids rooms totally rearranged. Gavin shares a room with Spence and I felt it would probably be better to move him out of there for when Spence is immuno-compromised and I don't want Gavin to sleep alone. I decided, therefore, to take apart his crib and reassemble it in Belle's room but some rearranging was in order! Now I just need to re-cover Gavs bumpers because they definitely don't match in Belle's room (because I totally have time to do that!) I then moved things back to normal in Spencer's room. My muscles are aching from all of the furniture moving, but it sure feels great to have it all done. ANYWAY. Nate and I enjoyed an evening of "catching up on our Tivo" while Belle and Spence watched a movie upstairs. We watched the last two Chuck's and a Community. Gavin sat and giggled all evening with us and I surprisingly enjoyed myself as we laughed through our shows. For a moment, as we all sat there, laughing, I forgot myself. I forgot about our crazy life. I forgot about our "cancer". We were a normal family, if only for a moment, and I was breathing again. I soon remembered that I had not flushed Spencer's central line and trucked my sore muscles up the stairs to help my baby. This moment I had just experienced did not make me sad, or angry, I was thankful. Thankful that I was given this gift of breath, of laughing, of my family.
My giggling Gavs. He was so funny tonight. I also discovered that he broke another tooth through! Hurray! Two teeth!
My sleeping babies. They were watching a movie on our bed and I came up to them sound asleep!

Good Freaking Night

I would really like to blog about our fantastic day but I am exhausted, depleted. After around 400 miles, twenty car rides, 5 radiation sessions and 7.5 hours of chemo (20 hours total after fluid bolus and anti emetics) I am ready to sleep for a very long time. I would love to take a whole Unisom and wake up on Monday morning but I still have lines to flush, medicine to administer, bums to change and a family to take care of so I will take sleeping in until 9, maybe 10. I will return refreshed tomorrow.

Remember Me

My Melly is a supervisor at a movie theatre and we occasionally indulge in midnight previews of movies coming out the next day. Tonight was Remember Me. This is going to be a spoiler for anyone who is planning on seeing the movie but I relating it to my life, and my experiences. It is relevant. It is hard for me to watch movies about young twenties finding themselves. I lived that life. I experienced that depressing life of emptiness and mistakes before I was able to find who I wanted to be, and before I had the faith enough to be who I wanted to be. All of those things have made me into the person I am, the mother I am, the wife, and the friend that I am now. Those times were dark and sad and in the past. After about two hours of depressing family life, relationships and self reflection the movie ends on September 11, 2001. This day for me is significant in more ways than the obvious. This is the day that I was "one day" pregnant with my first child, my son, my Spencer. I woke up that morning to the phone ringing. My best friend, Sara, told me to turn on the television. It was 8:45 a.m. in Utah. My heart sank. Nate and I had been trying to get pregnant, and all I could think about was, "how can I bring a baby into this sad "at war" world?" I was terrified. I found out two weeks later that I was indeed pregnant. I remember buying "What To Expect When You're Expecting" for Nate. I wrapped it up and gave it to him with a "congratulations" card when he got home from school that afternoon. I thought my emotions were contained until he opened his card. I had the pregnancy test hiding behind my back. He looked up at me and we both started to cry. The excitement, the terror, the daydreams of being parents, first time parents, were now real to us. I remember the fears I had. What if I can't get pregnant? What if I have a miscarriage? What if there is something wrong with my baby? What if something tragic happens during the birth? What if my child is kidnapped? What if my child dies? The fears they never end when you are a mother. What if my child has cancer? What happens when we are really faced with these fears? Then what? I don't have the answer. I am still trying to figure this out, but until then I will get up in the morning and take Spencer to radiation, I will take him to chemo, I will enjoy my children and my husband and I will hope that I find the answer.

Different Perspective

So yesterday I mentioned the boy who was here for his last day of chemo. Today was a different situation. A situation that put things into perspective a little for me and made me thankful for where we are in our treatment. A mom and dad walk into the oncology clinic for the first time. They are holding their sweet two year old boy. He has long blond hair, rosy cheeks and a big smile. He was wearing super cute Utes scrubs. The mom grabs a few tissues for the tears she knows that she is going to shed. The nurse comes into the waiting room and tells her they are finding a room for her because "the Dr." wants to talk to them about his scan results. My heart dropped into my stomach. I wanted to hug her. I wanted to cry with her. I was thinking about how you would feel to tell a mom "your baby has cancer", and then I thought I don't think I ever again want to hear for the first time "he has a malignant tumor". Barf. Although we have only been going through this process for a month now, I would not for the world want to have to relive those awful first two weeks. Not knowing, waiting for "results". Blood results, MRI results, CT scan results, bone marrow results, PET scan results. So many results before you really know. Too many results can make your heart beat right out of your chest. I think it happened to me. We have many more obstacles to experience and many more tears to cry but I am so glad we are over the "not knowing" hump. We are able to just move on with treatment. We know the beast we are dealing with and can pray everyday for the strength of positivity! I took some more pics of Spencer's hair (obsessed, i know!). Nine more days, we need to hold on for nine more days!

Erin Go Braugh

The girls in our youth group at church put together a fun St. Patrick's Day party for Belle and Spence this week. They colored, decorated cookies, played games and found a pot of gold! They had such a fun time and the girls just love my kids so much. We are so lucky to have them!

Bring On The Rain

I can't sleep and I feel sad tonight. Spencer has been throwing up and is pretty much bald on both sides of his head. He will not let me shave it. I suggested a mohawk. He declined. I even told him he could paint it green. He declined. Cancer is setting in. Last week we could go out and nobody would know that he had cancer. Today it is obvious. A woman in the elevator was with her daughter who was bald, she looked at Spence and said "You going to the fourth floor?" Oncology is on the fourth floor and she was assuming that was where we were going just by looking at him. I told her yes, she looked at me with all the sadness and all the empathy a cancer mom could give to another cancer mom in one quick glance said, "good luck today". It is hard to describe this sadness that we are all going through right now. It isn't a depression, it is just this underlying sadness that keeps tears close to the surface. It is hard to be sad all of the time when I have such wonderful friends. Every time I begin to feel sad one of my friends pops up somewhere, like they knew I needed them. They, you, fuel me and give me the energy I need. Beautiful gifts from God filling my life with strength. I keep thinking of the lyrics to JoDee Messina's Bring on the Rain
"Yeah I might feel defeated and I might hang my head, I might be barely breathing but I'm not dead, tomorrow's another day, and I am thirsty anyway, so bring on the rain". (but not too much rain!)

CALLING ALL VOLUNTEERS

So I know that I am not supposed to help with the "benefit" that my friends, my wonderful, wonderful friends are putting on for our family but I know that they are looking for volunteers to help at some of the booths, more baked goods for the bake sale and they are looking for a company that is willing to donate water for all of the volunteers, and I feel like this is the least I can do to help them. If you or anyone you know can do any of these things email me, Holly, at goochymomma@gmail.com and I will pass it on! Thank you for your support to our family. We love you.

Punching Bag

I was told last night that I "needed" to try Dunford Donuts. We got out of the house a little early this morning so I thought I would take him to get a donut. He chose the green sprinkle one. His hair is so thin, and he is so angry. He will not let us shave it yet. It is really hard to describe the emotions we are all going through. Nate last night was kind of struggling and said "sometimes I think this world just totally sucks." I have been trying so hard this week to stay positive and it is hard when Spence is going through an angry phase. Because I am the only one with him all day long he takes it out on me. Maybe not "on me" but "at me". I don't blame him. I just wish I could take it away from him. He is angry that his hair is falling out. I have been trying to compensate by fulfilling his every wish. He yells, he cries, I cry. I wish I could take it all away from him. There is a little boy here in clinic today and all of the staff just went into his room and celebrated because today is his last day of chemo. OH to be the last day of chemo. I cannot wait until we can move on from this strength and faith building trial and begin to live an almost normal life. For now, I am trying to come up with every idea I can to ease the anger of my sweet boy.