A BIG HUGE Catch Up!

Cute cousins enjoying some sidewalk chalk at grandma cindy's.

My cute Spence at grandma's. Aunt Melissa made some delicious muffins.
The kids enjoying our neighborhood's pancake breakfast for the 4th of July.

Since Spence and Nate missed out on fireworks because they were in the hospital, we enjoyed some of our own with the Reng's and the Gatrell's.


Fourth of July with Friends!

Baptism

I CANNOT BELIEVE THAT I HAVE NOT BLOGGED SPENCER'S BAPTISM! I am so sorry! My mind is not the same! This day was about the most perfect day I have had in my whole life. I am not going to write much because it is not easy to put all of these feelings into words. We had to wrap him up really well so that his central line did not get wet. There were probably about 150-200 people in attendance and we were still missing many friends and family. We are so blessed to have so many people love my Spencer. The next night we had a fabulous fireside with an incredible Polynesian choir, and a talk by Elder Groberg from the Other Side of Heaven. I would like to do a separate blog on that night. My friend Heather of White House Photography so graciously took pictures for us both nights!

Ode to Paige

Sorry I skipped yesterday. I was drowning in about 100 loads of laundry. When I finally came up for air, it was bed time, glorious bed time! Today my blog is random. I am blogging about my friend Paige. Paige is one amazing person. She dedicated many, many hours into making Spencer's fundraiser in March a humongous success. She has brought over many diet DP's, and dinner's for our family, based on inspiration. She (I should say and her family) have visited Spencer in the hospital, and continues to give me, us so much support. Today I saw her at Walmart and she was wearing her Super Spence shirt. This is not the first time I have seen her sporting it, along with her kids. I have never seen her without her Super Spence bracelets, even in her "pretty clothes" at church. Paige is one of those friends who is loyal to the very end. She never gossips, she is kind, stylish, and always smiling. Even today when I saw her she mentioned some more fundraising stuff she wanted to do at her garage sale in a couple of weeks. She is always serving our family. Paige, I just want you to know that I love you and all you do for me. I AM SO BLESSED to have you in my life!

Swimming in Chemo

Today Spence had his last dose of Irinotecan at home. Day 5. He is feeling a little sick, but has been a trooper so far. It is so hard on his body to have chemo that many days in a row, even these "gentle chemoes." He is literally heaving as I write. It is so sad because he does not have any thing in his stomach, his feeds go straight to his intestines, so throwing up is only major heaving for the poor guy. I did not take any pictures of him doing his home chemo but it was pretty easy and totally convenient. Someday this will all end. Someday. Isabelle started swimming lessons today. They are learning to float on their backs. I was surprised that she didn't put up more of a fight because putting her head back in the water terrifies her. She did a good job, though a little hesitant. It is nice for her to do some normal things in our crazy life. She starts soccer soon with her friend Ben and we are all excited for that. School starts in a month and I am craving Fall. I know the summer has been so short but Autumn makes me happy, and it is my kids favorite time of year as well so I am hoping to bring some more happiness into our home. We love the summer and will enjoy every moment of warmth it gives us, but anxiously await the two seconds of Fall that we get to enjoy here!

24th of July

For those of you not familiar with the "24th of July" it is a celebration of the Mormon pioneers who sacrificed much to get to Utah. This is a huge event in Utah, and celebrated much like Independence Day. We began the day with a pancake breakfast in Nate's parents neighborhood. Our friend Kelly brought her cool motorcycle for all of the kids to pose on. They had so much fun with it. We then went to the parade, had a bbq, and went to see the fireworks. In the middle of all of this Spencer also received his third dose of Irinotecan chemo. We were able to do it at Nate's parents house so that he could enjoy the day. Brielle and Chase, our awesome friends, sat and played Wii with him as he was getting his chemo, and while Nate and Isabelle and the rest of the "boys" went golfing. It was a fun filled day, and I am glad that Spence had the opportunity to partake in our days activities. Next year we will do the carnival and all it entails, when he is good and healthy! It was a fun day to see old friends and hang out with the family. The kids enjoyed their glow sticks and made happy faces, earrings, nose rings and my favorite, the feeding tube glow stick, that was Isabelle's creatiOn the way home all of the kids fell immediately asleep. I love the last picture with Belle asleep in her car seat with her legs still crossed, such the lady.

Back In The Saddle

I am sincerely trying to begin my regular blogging again. There are too many things to be thankful for to not blog everyday. Today marks three full weeks in boot camp, with one missed day. This week has been a struggle for me. Besides my horrendous shin splints and sore muscles, I have been lacking the spirit and enthusiasm that has been pushing me through the past couple of weeks. I decided to step back and analyze the reason behind this. Fatigue? Lack of calories? Not enough protein or vitamins? I have been so disciplined and getting myself into bed by nine every night. My calories are definitely lower than normal, but I have upped my protein and have been taking my vitamins daily like a good girl. And then, as I was doing my Frankenstein stretches this morning, I realized, it is chemo week. Something inside of me, deep below the smiles and hope, wears on me, eats at me, makes me bite my finger nails. All week I have been tossing and turning, not sleeping. It's chemo week. We have had many chemo weeks. Some worse than others but I think I still get sad. I do not think it is a sadness that has to do with doom, or with a feeling of unfairness, just plain sadness. It makes me sad for my baby boy to have to do this so often. A sadness of the necessity of poison running through his veins. A sadness of telling him he cannot enjoy the weekend the way he wants to because his numbers are too low. So many things to make me sad. We will get through this big chemo week. We will get through this year. Luckily the disappointment in our lives gives us a different perspective on true happiness, on true love, on true hope. It gives us the opportunity to realize the enjoyment of the company of our families and our friends who love us so much. Chemo week, you may have worn me down just a little, but life is too happy, and filled with too many blessings, and we will conquer you...until the next time.

Chemo Schmemo

So I have totally used this title before! So funny. I guess that is how I really feel about chemo! Today is a long day but we are holding up pretty well. I started with boot camp at 5:30, then a shower and a quick throw together of the kids, dropped them off at grandma and grandpa's then off to Primary for a bone scan and chemo. We had to be at the hospital 9 a.m. so that he could have his ink injection for the scan, then we had a two hour wait before the actual scan. We decided to go to the Forever Young Zone for the first hour. We played foosball and made silly hats out of the surgical caps. We made one for Ray, our new friend, who happened to be in patient and used our second hour visiting him. The funny boys decided to make their hats masks instead. It was so good to see the cute baldies together. How nice to have a friend who can relate. We are now sitting here in infusion receiving chemo. It has been awhile since we have been to clinic for chemo and it is nice to see some familiar faces. It was so great when we walked into ICS to see Ray earlier, we were stopped by so many nurses and techs who wanted to say hi to Spence and tell him how good he looked. It was also great to leave! Today he gets Vincristine and Irinotecan. The Irino is a five day chemo and we are sooooo lucky to have good insurance who approved the home health administration of it for the next four days! Chemo at home! What a fabulous idea! Now we can enjoy the holiday weekend (Pioneer Day is July 24th in Utah, it is a huge celebration). I always forget how much I love the people here. Everyone is just so accommodating and so wonderful to us. I just wish every child in need of medical attention could be treated here. I feel safe here. It is most definitely a place of healing, body and spirit. Sometimes I forget that there are "normal" kids (even though I have a couple myself) and am just getting used to these things. It is awesome to think that there is an end and I will have a boy with hair again! Today was a pretty good day in spite of our busy schedule.

A Little Something

Here's a little sumpin sumpin for you to enjoy while I try to organize all of our pictures from the 4th of July to now. Gavs is just chillin on daddy's shoulders while he shaves. Made me happy.

Kiss 'em Hug 'em Love 'em

All around me I hear, "did you hear {so and so} has cancer", or "{this person} died" or something of the likes and it is just too much. I am guessing some of you that read this were friends with Bunny, and I am so sorry for your loss. I didn't know her but I read her story, and I saw pictures of her with her beautiful family and little babies and my heart aches for them. For those of you who didn't know her, she was a beautiful 29 year old mom and wife who was taking a bike ride and was hit by a truck and she died the next day. There are sad stories everyday. Sometimes I wish it could just be "the end of the world" and I can begin living in eternity, happily, perfectly with my family. I just started this new paranoia thing. I swear I look into Gavin's eyes or Belle's eyes and their pupils are different sizes. My heart drops and I think I can't do this again. Of course their pupils are completely normal and symmetrical but it freaks me out. What would I do? My kids and my husband make me so happy. They totally complete me-Tom Cruise did not know what he was talking about. It would be a drab world without them and I am thankful for my faith that continues to give me hope. I have a friend whose nine year old boy has terminal cancer. She posted that is MRI results showed no more growth but his physical symptoms are worsening. What would you do? Your sweet little boy is suffering and his life is slipping through your hands, and it takes all you have to enjoy every last minute with him. My prayers, and my pain, and my tears go out to her. I have done a lot of really hard things in my life but being a mother is the hardest. I am sorry if this all seems so jumbled. I am just having all of these random thoughts. To sum things all up: Life is sad, but I am thankful for great family and kids to make it beautiful. Just a little update, Spencer is doing really well right now. He has to wear his leg braces continuously now, which he DOES NOT like at all. We had to buy new shoes 4 sizes too big to fit over them. It is kind of cute looking, his HUGE feet. His face looks so good and his spirits are so high. I do panic that we are going to wake up and his face will be droopy again, but then I collect myself and remember my hope and thank God for the miracles we have seen thus far. He has a five day clinic chemo starting next Thursday, along with a bone scan that day. The testing is always so nerve racking! I also found out that we don't have to go to clinic all of the days they will let him do the rest of the chemo at home, which is FABULOUS! I hope this really happens. I have the best family. I hope you all feel the same way about your family. Don't forget to hug and kiss your babies (and your husband) everyday and tell them that you love them as many times as you can because you never know what the next minute will bring.

So.

So. I have a lot of pictures to blog. I know that I have them and I have not been doing anything about it. I thought maybe I have been exhausted from my boot camp but really that is not it. I was thinking about it this morning and I decided that I am relishing this break. I feel that if I blog about cancer, then we have cancer. Does that make sense. Things are at a balance for the time being and I like it this way. We are feeling kind of normal. You know because feeding tubes, line flushes and bald 8 year olds are normal! We have adjusted things to our functioning and are doing quite well for the mean time. I am really learning to slow down and that has been a great blessing to all of us. I was able to make dinner for a friend's family this week, who was having a bad day and it felt so great to do something for someone else again. Especially for this friend who does so much for me everyday! I will work up the mind power, emotional strength and acceptance to start blogging again. I will make it a goal to post pictures this weekend. Today I am thankful for my health and my strength. This boot camp has built up my strength and makes me thankful for the ability to move and use my body.

Beautiful Boy

This last weekend was wonderful. The whole thing was great. It has been a spiritual, emotional and fabulous few days. I have pictures back and will post them in the next few days. I just wanted to keep you all updated. Spence is doing well. His numbers are pretty low today. Of course we were in the middle of a movie, in a public place, with lots of germs when I got the results of his blood draw. We rushed home and are now quarantined for a few day until his counts begin to rise. His first scout day camp is this weekend and I am beginning to think that he may miss it. Life is definitely full of one disappointment after another but hopefully he will forget a lot of these little details. I am so thankful to be a mom. I love each one of my children for their differences and their quirkiness. I am thankful for life even when there are disappointments. I am thankful that my son is so brave that he can shake these disappointments off without too much heartache, because MY heart aches watching his disappointments. He is growing up. There is a lot of difference in him from the last five and a half months. He looks so grown up. His face is different. He is so beautiful. I watch him play video games and think about how good he looks. How lucky we are to see him look this good. I decided that I am going to change my banner on the blog because these pictures just do not look like my guy any longer. I want to update it with new "beautifully bald" pictures. We have this week off and then at the end of next week we will start up our clinic chemos. It feels so nice to be moving on in the treatment plan. Next week will be week 20, 7 weeks shy of our "half way point". This is a long road, but it is moving.

Baptism Day

Wow. I did not realize that I had not blogged since Monday. I started a weight loss boot camp this week and it has been pretty intense. I have been going to bed early because it is at 5:30 in the morning, so needless to say, I have been exhausted. Today is baptism day. I am filled with many emotions but have been suppressing them so that I can stay focused and get things organized. Tonight I will let go. I am so pleased with my son and his choices in his life thus far. He is filled with faith and a deep understanding of the healing powers of the Atonement. I strive everyday to be worthy to be his mom. I have a friend who is taking professional pictures tonight, so it may be a few days before I blog this wonderful day. I am thankful to all of those people in Spencer's life who have taught him and who have been wonderful examples in his life. I am filled with much happiness today for the life that I have, for my children and for my husband. Nate and I are so blessed to have such a beautiful family.

Bring it On

Throughout my life, and more now than ever, I hear a lot about trials. Trials make us stronger. Trials are here to make us grow. I believe whole heartedly that trials do these things but I do not believe that these are their only purpose. All of us have trials. Some people do indeed need to grow, and gain strength, but trials do other things as well. Trials, tribulations, afflictions, sorrows, have done many things to make me who I am. I have had some pretty big "trials" throughout my life beginning as a young child. I have definitely brought on some of my own afflictions but most have been God's "strengthening" exercises. Trials, now for me are not strength builders. They reaffirm, they testify and they prove my strength. I think that the Lord sometimes wants to double check this strength or maybe Satan likes a challenge. There is no challenge here because there is NO OTHER way for me. I am deeply rooted in God. These words are not meant for me to show you "MY" strength. I want to testify to you that the Lord builds us up, molds us, strengthens us if we allow ourselves to be sustained through Him, to root ourselves in faith and to build our foundations upon Him. I have times of vulnerability, sadness, and even anger, BUT NEVER doubt. Life is ever changing, unstable and full of surprises, but the Lord is not. He is constant, and solid, and warm. He has never left me and always gives me the peace I seek. I am me because of my trials. I don't want to open myself for more "strengthening exercises" by saying this, but I feel privileged that God has given me these experiences to prove to Him that I am ever-faithful, unwaivering, anchored in Him. I have been feelin that I didn't blog enough on my faith and who I really am. This is me. Through my sorrows, my tears, and my vulnerability I will remain this way. I may be making myself an easy target for Satan and for more trials but to this I say "bring it on, I am a daughter of God!"

Vulnerable

Tonight I feel vulnerable. I have not let my guard down like this in quite some time and I do not like feeling this way. Nate talked to one of our doctors today. She said the same thing she did last time. She did not think there was a lot of improvement in the tumor overall since radiation but she said that there are good signs or improvement in his face and in other parts of his body. This got me down. I do not know if it was just the anxiety of not being able to hear her myself, and sense her overall body language, or if it was Nate's anxiety not quite picking up all of the optimism, but it makes me feel vulnerable and I really do not like feeling this way. I started to have those thoughts again, the thoughts of losing my son, of a life without him. I was sitting on the couch with Belle and Gavs thinking, "is this it?" Is this how it is going to be? My two children. I think, could I have any more children? It is not like I could ever replace my first born child, and would I up my risk of repeating this horrible illness to my family by bringing another baby into this world? I do not like to be a downer but this is me, raw and this is what I am bringing right now. On a more positive note this is the awesome email I got from Gina, our wonderful friend in California who heads up Team Spencer L.A. and who is in charge of all of the shirt orders. Let me tell you, this woman is going to be getting some big old blessings in the next life. This is what the email said and the pictures to go along with it:

Thanks to Farmers Insurance and one awesome super hero 62 envelopes and 13 boxes went out to 25 different states today to 85 different locations!!! All in the name of Superspence!!!! How awesome!!



We also want to thank Farmer's Insurance (Nate's employer) for all of the support given to us by the staff nationwide. We are overwhelmed by the all of the t-shirt orders and the donations that still keep coming to us. You are all such wonderful people with fabulous hearts and we appreciate all of the love and support we continue to receive from you. Nate is lucky to be employed by such a great company and surrounded by good people.

Ray of Sunshine

I have not cried over cancer in awhile ( in the world of cancer moms awhile means like a week!). Spencer is doing well and is feeling healthy, I have had lots of reasons to smile. Yesterday I cried for the first time in "awhile". We had barely got settled into our hospital room when our nurse came in and told us about Ray. She said that there was a boy that was Spencer's age across the hall and he just barely shaved his head. He was soooo sad about shaving his head and was absolutely sure that there was not another kid around with the same "head style". He was not feeling well but she asked if we could just wave through the window so that he could see Spence and his cute bald head. Sometimes Spencer is hesitant about stuff like this. I was not sure how he would react, but with a big full smile, and nod of the head he said "yes!" We walked over to the room and cute little Ray feeling nauseated and all tucked under his blankets looked up and gave the sweetest smile when Spence waved to him and when he caught site of the identical head! Oh my heart. I have always known that Spence was a special kid. A different kind of special. The nurses here have shared with me that they will not work anywhere else because every single one of these kids possesses this same kind of "different special". I can testify to you that what I saw yesterday between those boys, even in the short moments it happened, and the feelings I get around these kids that this is most definitely true. I started welling up right there in the hall but I composed myself. I thought of his mom who was there with him and all of the things going on in her heart and in her mind, and in her soul over this new diagnosis. I wanted to tell her that things do get better, or at least that things feel more normal over time. I was telling my stepmom last night about this sweet little scenario and we both starting crying. How lucky we are to know these boys. How lucky we are to experience things like these in our lives even through yucky trials. I am thankful to have a son who can recognize his strengths and have the ability to serve even through all he is experiencing.