Fabulous Update

Dr. Bruggers, who is not our doctor, but doing a favor for Dr. Verma I believe, came in today to tell us that the PET scan results look very good. I didn't talk in detail to her about it, I am going to leave that to Nate this week to talk to Verma, but it seemed as though there were no spots on his spine and that tumor activity was slowing down. Cancer cells use more energy than normal cells and the PET scan picks up the activity of these cells. She said a couple of times that the activity is slowing down or in other words, the tumor is beginning to die, and that this was an optimistic scan! That is all I have for now and I will keep you updated on any further information. Thank you for all of your prayers, they are working! Spencer is continuing to kick cancer in the rear!

Spencer Nathan Gooch...

...has chosen to be baptized a member of the Church of Jesus Christ of Latter Day Saints in July. There will also be a musical fireside in Spencer's honor the following evening and Elder John H. Groberg (The Other Side of Heaven) will speak on faith and courage. For any of you who are interested in attending please email me at goochymomma@gmail.com and I will give you the detail and directions. We would love to have your company and support.

Fun It Up!

Last week was so much fun! The beginning of the week we "movied it up" two days in a row! On Monday we saw Toy Story 3 and Karate Kid and on Tuesday we saw Marmaduke. It was so great to hang out with friends! Then on Wednesday Nate stayed home with Spence and Belle, Gavs and I went to the Oquirrh Park pool. It was so nice to be outside! After the pool we went to Sub Zero Ice Cream in Jordan Landing. Okay let me just tell you this is the coolest (no pun intended) ice cream place ever! They cryogenically freeze your ice cream right in front of you. You can choose tons of different bases, like fat free, skim, premium, yougurt, and even soy/rice. Then you choose your flavors any combination of flavors! Then you choose an add in. They then freeze it and mix it in front of yours eyes! It was awesome and it was delicious! I felt blessed to enjoy such a fun week with my kids, to feel normal, to feel the sun, to feel.

Nightmare

Spencer had his first cancer nightmare. I am really surprised that it has taken this long. Nate went to check on him in the early morning and he was kind of whimpering in his sleep. He told him that he had a dream that his tumor had grown to ten times its size and that you had six more tumors in his brain. This is an eight year old boy. These are the things he worries about. Why is life so not fair sometimes? This just broke my heart. I cuddled with him when he woke up and I said, "it is a good thing that was just a dream and in real life your tumor is shrinking." What else can you say? A day or two before this happened, I had asked Nate what time he had gone to bed the previous night. He said he finally fell asleep around three because he was sad and was having anxieties over Spencer's health. Seriously, these boys are killing me. Nate has always been worry free. I am supposed to be the one with anxieties but now I am exerting strength for all of us. Life is a wild ride. There are many times that I have wanted to jump off but what lessons would I learn by doing that? We are enjoying time away from the hospital but it is funny how we have grown to love the nurses and the staff in the ICS. There are a few nurses I really miss. Spence and Nate will be there Wednesday for another long chemo session. Hopefully it will be the last until September.

More Blessings

I am lacking on blogging, I know. Its been a crazy week, in a fun way and I have been trying to spend less time on my computer, as per my Nate's request. I just wanted to reflect on my gratitude for a moment. Remember you were supposed to remind me to be thankful everyday for something, anything?! I am thankful for life long friendships AND family. I know I have been thankful for these things before but come on when you have the friends and family I do, it's hard not to show gratitude. When I think about who my closest friends are, my list just doesn't stop. I am soooooo blessed with really close friends. I am thankful for my bestest high school friends, who give me support and love even long distance and who know me completely. There is nothing these girls do not know about me. I am thankful for my "new" best friends, post high school, post college, post children, and even post diagnosis. It is so great to have these woman in my life. I am so thankful for my Dad and his family. My dad and I have been through many ups and downs in our relationship throughout the years as we both had some growing up and maturing to do but have come to love eachother in spite of these. I am thankful for my stepmom who is quite literally an angel, a savior, even, in my life. She loves my kids so much and never hesitates to help our family out. I love my siblings and my step siblings. I am thankful for my husband. I am thankful that we were able to go on a fun date tonight, and even hold hands, it's been a long time. I sincerely hope that these people in my life, all of the people in my life know that I do not take any of our relationships for granted and am so blessed to have you here with me.

Carpe Diem

Things happen for a reason. Everything does. I am a firm believer in that. Sometimes we shake the plan by making our own decisions and not going with the flow, but God already knew we were going to make those choices, so did it really shake the plan? I was so disappointed yesterday when our plans went awry, but today I am realizing, things happen for a reason. I have also realized that the Lord helps me out so sometimes I need to not react so quickly. So, if Spencer and Nate would have gone into the hospital this week I would have had to stay one night with Spence because Nate leaves out of town for a couple of days on Sunday. Now because things have shifted we get admitted the day Nate gets back. I will be with Spence for the day but then daddy is going to take over that evening when he gets home. He will come straight from the airport. My husband is wonderful. I know he feels like I don't show him enough how much I truly appreciate him, but I truly do. As soon as I called him to tell him about the blip in our "plans" (why do I plan again?) he immediately calmed me down by telling me that he will do anything he can to make this work out. I don't want it to sound like I don't enjoy staying at the hospital with Spence. Okay well maybe "enjoy" is not the right choice of word, but I am burnt out, and my back, my poor back cannot handle much more of the "chair bed". I love being with Spence. I love being the one getting all of the information from the doctors and nurses and knowing what is going on BUT I need to let Nate be involved also, and I need to be there for Isabelle and Gavin. I have had a couple of nurses remark that I am "always here." I think maybe some of the other patients have parents trade off more, or maybe they leave to do things, run errands, work out, etc. I just always feel like I should be there all of the time. We are still trying to adjust to this lifestyle and make the right fit for all of us. I do not think cancer ever really "fits" but we can fit our attitudes to cancer, to it's destruction! Today was a very good day. Another normal day with Isabelle and Gavin. I will blog tomorrow about it. Sometimes it is hard to have the normal days. Yesterday was a pretty normal day and when I was walking up the stairs last night in my "normal state of mind" I hit the cancer wall. Half way up the stairs I remembered that I was going to tuck in my son whose blood counts are low, who made need another blood transfusion, who is neutropenic , who is bald, who is hooked to a feeding tube, etc., etc. I still smiled though. Thanking God for the normal days, and for the chance to be able to have another day to tuck my kids in and to be with my family. Life may suck sometimes but there are always too many reasons to want to wake up in the morning and conquer the day.

Pooper Scooper

Why do I ever plan anything? Seriously. One more day until his chemo admit. I have a bunch of plans for Me, Belle and Gavs this week. Spencer's blood counts came back too low to be admitted tomorrow. We have to wait until next Wednesday. When I first get these results I just want to cry. Nate took time off of work to stay with him and I am thinking, great, I will have to do these last five days. No time with my other babies, no break. I talked to Nate and he made me feel better. He is going to work things out. I love him. I was feeling better until I realized they will be inpatient over 4th of July. Life is just crappy sometimes. You know the saying "when life gives you lemons"? Well I like lemons, I feel like the saying should be "when life gives you dog crap...." I don't know what could it be "then make manure to plant flowers?" Luckily, I have "flowers" in my life. My stepmom, my husband, my wonderful friends. These flowers have done too much for me to even begin to repay. I do have Bunco tonight. That will make me feel better. We also went to the movie theatre two days in a row and his numbers are low. Another reason to be worried. We went earlier enough that there weren't too many people there and I made him wash his hands a ton. SO, please pray that he doesn't get sick from being in public, and a pooper scooper for all of the dog crap!

...I Almost Forgot...

We left Spencer's sunglasses at home when we went to my grandma's and so she grabbed hers for him to wear outside! I LOVE this picture. He is freaking hilarious. I also threw in this cute picture of Gavs, chilling on the patio chair. I love these boys!

The Long Weekend

The beginning of last week was pretty mellow until Spencer's blood draws on Tuesday showed that his hematocrit was really low. We had his PET scan and his chemo scheduled for Thursday and I was bummed that we were going to have to take another day out of our cleaning house schedule to go all the way to PCMC for blood. BUT that is the way the cookie crumbles and we are prepared with glasses of milk! Luckily, the wonderfully organized hem/onc clinic canceled his chemo on Thursday and just gave it to him with his blood so that we didn't have to make another trip. I love them. The PET scan was at a different hospital anyway so it all worked out well. Blood takes a long time to be ordered and then takes a few hours to infuse so we were there all day. It was fun to see all of our friends at clinic that we hadn't seen for a while, AND some of our beautiful, skinny nurses (cough, Tiffany, cough) that we love to see as often as possible! The next day was even longer. We had to be at IMC for the PET scan at 6:30 in the morning and we did not get out of that place until 12:30 p.m. For me it was SIX hours of waiting. Spence, fortunately for him, was "out" most of the time. The anesthesiologist and her tech were awesome. They made the experience more enjoyable for the last time. The nurses, however, are just not the same. You can tell that they do not specialize in children. I love the picture with Spence in the cap. He didn't have to wear it, he just thought he would be funny!


On Friday we made plans to visit my grandma in Pleasant Grove. We had Kneaders sandwiches for lunch and hung out in the backyard and enjoyed the beautiful day, and the beautiful view. My Uncle Brian stopped by to say hi to Spence and then Grandma and Spence spent the res of the afternoon looking through old photo albums. Spence picked the ones with our wedding and with his birth. They were fun to look through. I forgot how freaking cute my Natey was back in those days. He is even more handsome now, but I think sometimes we forget who we fell in love with, but I am glad I fell in love with him!

After Grandma's we headed to Melissa and Jeff's (Nate's sister and her husband) house for dinner. We grilled chicken sausage (deelish), New York steak, Shrimp, and veggies, and then roasted some s'mores for dessert. Mars thought it was a good idea to paint her face with marshmallows, silly girl! It was an enjoyable evening.
The next morning we were celebrating my sister, Raynee's birthday, at Liberty Park. We grilled and played and relaxed. Spence ran around and played games and had an enjoyable time. It always makes me so happy to see him doing "normal" boy things. My sister Lindsay was there. It was nice to see her, it had been awhile. Belle played in the lazy river and had a snow cone. My brother Logan had just come back from scout camp the night before and spent the evening in the instacare. They went to Zero Gravity in the San Rafael Swell, which consist of slot canyons. One of the boys in the group, who was a lot bigger in size than Logan, got trapped in between on of the slots they were climbing. He was hanging there with the ground FAR below him, death waiting. Logan climbed up underneath him and supported him on his back for TWO FREAKING HOURS while they waiting for search and rescue. A total of seven hours later the boy was free. I wish I had pictures of Logan's back. He didn't have a shirt on while he was supporting this kid and his back is torn up. He is on steroids and antibiotics for the infection. He was totally a hero!


Sunday, Father's Day, was also a super fun day. We went to my dad's and had ribeye, and humongous crab legs, homemade potato salad, fruit salad, grilled corn on the cob, and pineapple upside down cake. The weekend was long but worth all of the fun and "normalcy" we are hoping the summer will bring us.

Last But Not Least

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On most chemo admits, we start late enough in the day that by the time we are done on the last day, it is too late to leave that night so we stay until the next morning. This last stay we got lucky and ended around 6 so we were able to leave that same evening! I feel like it was another tender mercy given to us, because the next day was Spencers last day of school. I wanted so bad for him to be there. It was kind of an emotional day for me. It is hard to put into words how I was feeling. I didn't want it to end. This whole experience has been surreal to me, dream like almost and now that we were coming to a close on a school year that should have been fantastic for him, it turned this dream state into reality. I almost feel like it was a "ghostly" year. Like we were never really there but flew in and out, never in our bodies. For the other two years of school I was a heavily involved room mom, participating in testing and activities and daily projects. I knew every child in each class. I still do. This year, I couldn't even tell you more than 4 kids names. Last summer the moment Spence found out he was going to have a "boy teacher" that is all he could talk about. He was so excited and he just loved Mr. Davis to pieces. I just feel like the boy got jipped. So, on the last day of school, Spencer spent his first whole short day there since his diagnosis. He had only been to school a few days since the Christmas break so he really hasn't had schooling since the holidays. It all just makes me feel like barfing. He did have a wonderful day and I am thankful to all of the wonderful, wonderful staff and parents who took our family under their wings and made the very best out of this awful situation for my son and my family. They played games and goofed around and had a fun time. I even left him alone at the school for two hours while I picked up gifts for his teacher and the wonderful office girls. I then picked up some lunch and headed to the school with Gavs and Belle and spent the rest of the day there. Next year will be a whole new ball game. Spence will be going through treatment for most of his school year and Isabelle will be in kindergarten. We are looking forward to a fun summer and hope that next year finds us on campus more often than not. At the end of the day on the last day, Mr. Davis asked if it was alright for Spence to be able to keep the classroom frogs. He said that Spencer just loved those frogs from day one and he felt he should have them. So, now Esteban and Ricardo are now part of our family and we love those dang amphibians!

Foot Drop

Vincristine, one of the chemoes Spencer takes, can cause foot drop. Foot drop is the inability or difficulty of moving the ankles and toes upward (dorsiflexion). It causes the leg to be lifted higher than normal to pick the foot up off of the ground. I have noticed that Spence has been floppy when he walks. His feet seem heavy and he cannot quite get them up like he used to. The doctors hadn't said anything about it until this last chemo stay. The test him by having him walk back and forth and then by walking on his heels. He is usually fine. This time he couldn't even walk on his heels at all. They had the physical therapist come in and check him out and she had the orthopedic specialist come in and they made molds of his feet and legs to prepare some braces for him. Because he will be taking Vincristine throughout the length of his treatment plan, they are worried about it becoming severe, so we are trying to help it now. He should be getting his new braces this week. He is less than thrilled but he is lucky we caught it early enough. Our last stay was very uneventful and fast. We had a visit from Moab, Jena, Nahvi, and Junie, and then Jackson, Laila, Tierney and Sloan. It is always so nice to see friends here at the hospital! I went running around the neighborhoods here in the early morning and it kicked my butt. The hospital is set on top of the mountain so it was treacherous to say the least. I also read my first books since Spencer was diagnosed. I am a reader. I have been reading since I was a young girl. It is one of the things that defines me. I love to read. When Spencer was diagnosed my whole everything was thrown off balance. I remember trying to read a book in the hospital right after his biopsy and it just didn't work. I could not focus. It has taken about 4.5 months to finally find that part of me again and it was great. I FINALLY read Hunger Games and Catching Fire, and let me tell you I am so glad i did! They were awesome. I made a rule that Spencer couldn't watch television the whole time and I promised that I would stay off of my computer. We played Battleship, Bingo, did an art project, lots of Mad Libs and we read. I let him play his DS for some of the time but it seemed much better not to have the television on. It was actually an enjoyable time. We were lucky enough to have our most favorite nurses and we even got to come home early!

Just To Clear Things Up...

I think a bunch of people were confused about the "clear bone marrow" result, and I thought that I would make things clear. When Spence was first diagnosed, they did a bone marrow aspirate and a bone scan. The aspirate tells us if any of the cancer cells from the tumor have spread to his bone marrow. Bone marrow is the spongy tissue in your bones that produce stem cells, some of those stem cells develop into red and white blood cells. That could potential spread the cancer to different parts of the body. His first bone marrow aspirate showed that 25% of his bone marrow was saturated with these rhabdo cancer cells. This is one of the reasons he was a diagnosed with stage 4 rhabdomyosarcoma. It is called metastatic disease, or to say the cancer has metastasized. SOOO, he is supposed to have routine bone marrow aspirates to see how well the chemo is working throughout his body, on all of the cancer cells. So this last one said "clear". They did not see any rhabdo cancer cells in his bone marrow. He still has a tumor. It is shrinking, but still there. He still has cancer, but things are looking up. His body does not have to fight "as much" cancer at this moment. He also had another PET scan this last week. The PET scan shows live cells;cells that are alive. His original bone scan in February showed that he had 3 pin point cancerous spots on parts of his spine, also metastatic disease. We followed up with a PET scan to confirm this diagnosis. We are following up this week to see if there are any improvements on those spots. I am hoping to see that there ARE NO spots. The scan was a full body, and I am extra crossing my fingers that they see some dead tissue, in the scan, on the tumor. That would be joyous. We had a great weekend and a full week. I am working on blogging now. I will be posting a whole bunch these next two days before Nate kidnaps my computer during Spencer's next five day hospital stay (yes Nate is staying with him! I have a break to be with the other kids! HAPPY DAY!).

Moab's Baptism

Moab and Spencer have always had a special connection. They became instant friends in kindergarten. It is amazing to watch these kids grow and mature into beautiful people. Mo and her awesome family have been so supportive to our family and have been cheering Spence on from the moment he was diagnosed. Moab was just baptized. Her baptism day was supposed to be the same as Spencer's but we have had to make some changes. I think this turned out to be a good thing though, because we were able to celebrate with Mo. It was a beautiful day and it was another day that I got to see Spence come to life and run around like a normal kid with his buddy! I love these kids. Afterwards we met up for lunch and games and the kids had a blast. Spencer even tried a carrot. He won't try anything for us, but for a girl?! We were able to see Mrs. Hannah, the kids kindergarten teacher, and it was just a fun day!

No Complaining Here

As I sit here for hours waiting for Spencer's PET scan. I watch and listen to all the other's around me. We are in the imaging department so there are many different reasons to be here. Bone and joint issues, gallbladder, cancer, the list is endless. It is surprising to me that so many people complain. I have definitely had my time to complain to you but it is not the same kind of complaining. It occurred to me that this kind of attitude stems from fear. Fear of the unknown. Fear of the medical world. Fear of the future. One woman in particular, older, poor, here to look for cancer complained to her husband that there was a lack of communication in "this hospital" when the nurse asked her another question about her surgery (from a different unit) to relay to the radiologist. Little does she know she is in one of the best hospitals, part of one of the best health care corporations in the nation. I feel lucky. On days that I miss home and just wish I was at the beach my husband reminds me how lucky we are to be a part of Primary Children's Medical Center. We are home to much research, including that of rhabdomyosarcoma. I also feel lucky to be a part of the medical industry. My schooling and my desire has immensely helped me in this journey. I understand better than the average patient. I know the "language" and I have worked in the hospital for enough years to not be afraid of it. I have an increased knowledge of the way things work and a deeper appreciation for our wonderful nurses and aides. This life is not easy, especially in this "season", but I am thankful for a mostly positive attitude to help myself, my family and most importantly my son recover more quickly.

C.L.E.A.R.!!!!

There were so many emotions that I wanted to blog today. I did not sleep more than two hours because of sick kids and I am a mess. I had been thinking about things I wanted to blog and feelings of feeling like I am spinning out of control, like I am losing grip on the few strands of rope that I am barely hanging on to anyway. So many thoughts running through my mind, my spirits however are changing because I just found out that Spencer's bone marrow results came back CLEAR. He said all looked well. There were no traces of any of the Rhabdo cells floating around, no metastasized cells! I have been praying for relief, for burdens to be lifted off of my shoulders. I wasn't quite sure if I could walk any farther with all I have been asked to carry and now I can breath, if at least for a moment. I will take this moment. I am so exhausted and so emotional and I just really needed some great news today. I needed to know that this hell and this poison is working. I needed to know that my baby is going through this for it to work. Little glimpses of "chemo in progress" give me rays of sunshine in this cloudy era of life. I also wanted to give a "shout out" to my friends. I had several friends feel like they needed to call me this morning. I needed these calls. All of your "feelings" have been inspired and I am thankful to you all for being able to receive that inspiration. Our family has been blessed with the very best friends in the world. Not everyone gets diet Dr. Pepper delivered to their door! I love you friends.

Genius....

...Jen Fauset. That is what you are.

To my babies:

"From the Clouds" Jack Johnson
"Oh, you're such a pretty thing, I'll take you and I'll make you all mine.
I will steal you from this patient world let it chase us, it could never take you back.
and I know you know me well enough to know I'm lucky to have you.
But all this just the little things, the words that I should tell you all the time.
You're so sweet to me when you beat me in doubles solitaire.
You're so sweet to me in a world that's not always fair.
We could watch it from the clouds
We can't stop it anyhow, it's not ours.
We could watch it from the clouds
We can't stop it anyhow, it's not ours.
More love that you feel
More your little heart will ache.
Love's the only thing that carries on
It's the only thing this world can't take.
This love is ours.
This love is ours.
This love is oooohoohoohoohoohoohoohooh.
This love is oooohoohoohoohoohoohoohooh.
Oh you're such a pretty thing, I'll take you and I'll make you all mine."

Quicksand

Drowning. Today I stepped into quicksand. The moment I stepped out of bed the earth began to swallow me up. I can feel my lungs becoming full of sand. I want to scream for help, to cry and kick but I will only go under faster. I will be consumed. No space for a breath. No time for life. Crisis after crisis. I just would like to have one week. One week to organize my life, and my home. No more little pieces of sand creeping up around me, swallowing me up. I just finished reading Hunger Games and Catching Fire. I feel like this is my story. Fighting and fighting and fighting and it never stops. We get to take a breath and then we are hit again, always in "the arena". Today I need to go to bed and wake up tomorrow.

Super Woman

Running is torture for me. Pure torture. I admire and am amazed by those who are able to run marathons. The time, training, pain and discipline that goes into running a marathon is just totally beyond me. I feel like it is a super human power. My sister in law Chelsey is one of those amazing people. Super Woman. I have never seen anyone so dedicated to training and to her cause. This was her first marathon, choosing to run for the Huntsman Cancer Institute. She decided that she wanted to raise money for Spencer so she diligently passed out fliers about Spence and her purpose to many homes. The night before the race her sister, Brielle, came to the hospital and recorded Spencer cheering her on, telling her that he loves her. Chelsey was instructed to listen to it when she felt like she couldn't move on, when she needed the motivation. I think it helped. It was a very emotional reunion when we met her at the finish line. She pushed her body to intense heights all in the name of my baby boy. We hugged and cried. I wish that I could explain to her how much she means to me, how her physical display of support and love has touched our family more than she will ever know. I sincerely hope she knows that she is one of my favorite people in the world, that I am so glad to have her as my sister and that she indeed, is my super woman!