Wednesday, October 27, 2010

Foody and the Beast

Doxorubicin. Blah. 48 continuous hours of red poison. This is the chemo that put him into the hospital for two weeks. We need a lot of prayers to keep him healthy. This is thankfully his last dose of this stuff. After this week we have only 4 inpatient chemos left. Hurray! We have a clinic chemo next week and then a big evaluation the following week. Then we will begin a new chemo. But since we are focusing on the positives this week I will talk about the FOOD! Oh my holy appetite! Yesterday Spence ordered room service SIX times. I wish I had my camera cord to post the pics! He started off light with oatmeal, then moved on to some mashed potatoes with gravy, followed by some nachos and some french fries. For dinner he ordered a smothered burrito with sour cream, carrots and broccoli, a dinner roll, a garlic bread stick-which he didn't care for, and an oatmeal raisin cookie. To back track a little, in between the schload of snacks and dinner he threw up a little. As I was wiping his mouth up he says, "mom can you hand me the menu?". Oh my Spencer. After dinner he ordered buttered popcorn, skittles-they gave him two bags, regular and berry, and a Sprite. He wanted to be prepared for our movie night, Harry Potter and the Chamber of Secrets. It was a fun day watching his excitement over all of his food choices. It has been a long time since this has happened. He opted to stay here overnight on our last day instead of leaving late that night because he wanted to eat breakfast before he leaves! I love it! Thanks for all of the prayers regarding his taste buds. Please pray that this chemo does not kick his bum like it did last time!

Good Things

DANG IT! I totally left my camera USB cord at home! I will keep posting this week but I will be pictureless until I can grab it. Maybe Friday. This trip is a little emotional for Spence because he will be missing out on all of the festivities this weekend. It is hard because Halloween is a big deal in our family. He will be missing out on our church party and the school parade. He gets home on Saturday (Utah celebrates holidays on a Saturday if the real holiday is on a Sunday) and since this is the Chemo that kicked his butt last time and put him in the hospital for two weeks, I am going to be cautious and not let him go trick or treating. Sad day I know. It is one crappy year! We can do hard things. And let me tell ya, missing Halloween is a hard thing! We are compromising and sitting at home with Gramma Suzi and Grampa OK and watching Nightmare Before Christmas, eating donuts drinking hot chocolate and carving pumpkins. We will make things work. Belle and Daddy promised they will trick or treat and candy it up just for Spence. We are trying to focus on the positives. We were told that Halloween is the most fun day of all the year here at PCMC. The festivities will go on all Friday and Grampa is coming here to get all the right makeup done for Spencer's zombie costume. They also have Nightmare Before Christmas here and all of the Harry Potter's so we are going to movie it up with popcorn and hot chocolate. We will be one chemo closer to the end. And the most exciting "positive" is ROOM SERVICE! For the first time in SEVEN months Spencer will be utilizing room service! There are lots of good things about this stay! OH AND BEFORE I FORGET...Thanks for voting for Spence, he won the online costume contest!

Thursday, October 21, 2010

VOTE FOR SPENCER

Primary Children's Medical Center is having a costume contest on Facebook. Nate submitted a picture of Spence from a previous year in his mummy costume. The child with the most "likes" on his picture wins a book and a cool flashlight. Click on this link and "like" Spencer!

http://www.facebook.com/album.php?aid=212973&id=204326053387#!/photo.php?fbid=439848368387&set=a.436852658387.212973.204326053387

Voting ends on October 25th.

Wednesday, October 20, 2010

MIRACULOUS

I have MAJOR blogging to do to catch up. I have a ton of pictures from the beginning of the month to now. Before I begin on catching up I wanted to let you all of a huge miracle that took place yesterday morning. To preface, most of you know that Spence has a feeding tube. He WILL NOT put anything in his mouth. Not water, not candy, not ANYTHING. He made the decision that he will not eat until his tastes comes back after treatment because he does not want to ruin the taste of anything. Although he has made the decision to only eat with a feeding tube, he still FREAKS out when he has to get it replaced. Like 3 people have to hold him down and he screams bloody murder freak out. Needless to say, it is not a fun experience for any of us. I have been so fed up with this tube that it is only referred to as the "damn tube". Because it was moved to his stomach instead of his intestines, it has a higher chance of falling out, thus, being replaced more often. Fun. Yesterday morning he threw up tons. The tube came right out. There was frantic screaming on his end. Frantic. Screaming. Fun. It was Isabelle's birthday and I just had so much to do. Getting the tube replaced was not an invited change to our schedule. I once referred to the tube by my terms, and begged him to just eat so that we wouldn't have to keep going through this. THIS IS WHERE THE MIRACLE BEGAN! Instead of quickly responding "no way" he sat and thought about it. He didn't answer, but the hesitation was more than we have been able to get out of him thus far. So I did a little nudging, and daddy did a little bribing ($450 into Spencer's personal bank account for eating regularly). This pushed his decision. He was willing to try a bite of lasagna that night for dinner! UM WHAT? ARE YOU FREAKING SERIOUS CHILD? After all of the fighting he was ready. He drank some water that morning, had a teeny bite of a lasagna noodle that night and drank a decent amount of rootbeer. MIRACULOUS! We decided to take it slow and stick with high calorie smoothies. He decided that he was okay with the rootbeer flavor so for today he is drinking a rootbeer smoothie with vanilla ice cream, his feeding tube formula, protein powder, half and half and rootbeer. He said it tasted almost normal! YAY! I gave him an hour to drink a cup and I will give him more throughout the day. He said in the car today "dad was right, eating makes life easier!" then he said "I just said a prayer, mom, thanking Heavenly Father for helping me get my taste back a little". Sigh. Sweet boy, miracles and food. Slowly but surely. Please pray for him to continue to get his taste back and eat "real food" again!

Friday, October 15, 2010

Update on PROJECT SUPER QUILT

Oh my, I really did take a break from blogging. I have so many pictures to post and hope to have time this weekend to get it all up. Spence is in day three of a five day chemo! They are advancing it so hopefully he gets to come home a little bit earlier. My sister, Casy, is in town from Alaska and I have been spending the night at my dad's so that I am still able to go to boot camp while Nate is gone. It has been a party and a fun time. We had a girls night last night and it was so much fun. Spencer is doing really well and I hope that his blood counts stay up there and do not cause us any more grief. I wanted to thank everyone who has become involved in PROJECT SUPER QUILT. You guys are so incredible! I am hoping to receive the blankets by mid December but I will most certainly take them afterwards! We have a lot of fleece blankets coming which I am most thankful for but I am hoping to get more QUILTS. Tie quilts are perfect and easy! If you email me I will give you the address where to send or drop off blankets, quilts, and supplies and if you have already emailed me asking where to send them I promise I will get to you soon! Also if you have any questions regarding the project please email me! goochymomma@gmail.com

Sunday, October 10, 2010

"OH CRAP!"

I have been enjoying this little break with my family, enjoying the crisp Autumn air, enjoying life, and enjoying all the blessings that are thrown in our direction. I saw a quote today that I really wanted to blog. It is my new motto!
"Be the kind of woman that when your feet hit the floor each morning
the devil says "oh crap, she's up".

I absolute love this. Satan thought he knew what hell was until he met me! Be the woman, the man, husband, wife, mother, daughter, son, father that you were destined to be. Stand strong for who you are and what you believe in. Trust in the Lord with all your heart. Excel in the battle against your trials and be thankful at all times for the many blessings that you have.

Tuesday, October 5, 2010

Dodge

14 days, 28 nurses, 3 different infections, 1 nasal biopsy, 1 PICU visit, 3 different rooms, 2 different NG tubes, 8 medications, 30 techs, about 7 x-rays, 5 department teams of doctors, innumerous blood draws, and many cc's of urine later WE ARE GOING HOME! We are finishing up with our last dose of antibiotics and then getting the heck out of dodge! We are more than blessed to live in these days of advanced medical care. I am thankful for the life of my son and for the opportunity I get to be with my whole family (until chemo next week)! I am thankful for all of the people who have brought our family dinners and who have even come to the hospital to bring food and for the company and for sitting with Spencer while we needed to fulfill other family obligations. It has been a long emotional two weeks but thanks to the power of Faith, prayers, fasting and medicine we made it through! Spence is enjoying a game of Bingo while he gets his last dose of meds and before we skip out of this place. If you don't hear from me for a couple of days, no need to worry, just enjoying the fam. PLEASE don't forget about PROJECT SUPER QUILT.
This is real "red eye".

Horizon

I am starting to feel a little better. A little more myself. Spencer is able to go to the bathroom on his own at night, and it is not as frequent so I think we both have been sleeping better. It is amazing what sleep can do for you. We can see home on the horizon and I think that lifts both of our spirits. If things go as planned we are hoping to leave tomorrow. I was beginning to feel reclusive but now have an excitement of getting out into the real world and seeing some friends! I cannot even begin to thank all of you who have come to visit, or who have brought dinner to my family, or have joined in our fasts and prayers. We are so blessed to have you in our lives. I know I say that frequently but I want you all to know, friends, family, strangers, that we think about you constantly and feel so lucky to have you. I am so excited to go home. To be a family again. Gavin is not allowed on the unit because he is too young so Spence has gone almost two weeks without seeing him. Belle came to visit once but Spence was too drugged to remember so it will be nice to feel safe altogether once more! Here are some pics from this past weekend.


Spencer's platelets have been really low. Platelets are a clotting factor without them we bleed. Because of his low counts and his eyelashes falling out itching his eyes, they starting bleeding (gross I know) from his scratching. Cool pic, I think.
The Hymers, some of our favorite people, came to visit last night. Not only did they bring me dinner, they brought me TWO dinners to have later from Rumbi. He also got a new deck of cards (magic tricks coming soon).
We love you Noel family! Spence got a bunch of cool Silly Bandz. Isabelle is already trying to dibs them because the 100 they sent her weren't enough! These are all for Spence!
Corn dog! I was lucky to be able to spend some time with Jods, one of my really great friends on Friday. We let the kids play at Arctic Circle while we talked. It was totally what I needed.
When we were in PICU they put this cool name tag on his bed to warm things up a bit.
On our way to nasal biopsy, which by the way turned out to be negative for fungal infection.
Tired me waiting for him during the biopsy.
After biopsy, he was angry that I was trying to take a picture so he covered his face.
But I finally got one. As soon as we got back his vitals were normal, and have been since!
I forgot to blog this last time. I wish I got a picture with it all filled up but this beautiful emerald green fluid is what we suctioned from his bowels! Yummy!

Sunday, October 3, 2010

Good Report

I have not disappeared! I just took the weekend off. I don't know if I feel more rested this time though. I am pretty exhausted. These last two weeks have changed me a little bit. I feel different. I feel a little bit altered. I do, however, feel very blessed at the same time. I am thankful for the faith of friends, family and strangers. I am thankful for the power of God. I am thankful to be a mom. I am thankful to be the wife of a handsome, hard working, loving husband. I had things I wanted to say but my brain is tired tonight and cannot work out the right words to say. So I will leave you with good report. Spencer is doing so well. We are hoping to get out of here in a couple of days and have a much needed break until our next chemo stay. I love all of you and the love you have for my incredible son.

Friday, October 1, 2010

Miracles...Once Again.

I need to thank all of you for your fasting and your praying. Especially to our ward for the fast they held yesterday. After 9 days of fevers, they have finally broken. His ANC went from zero yesterday to 1.3 today! 1.3 is good enough to be in public! I have never seen his ANC go up so drastically. We are now just working on healing his typhlitis. His abdomen is still very tender but now that his ANC is up his body can help fight the inflammation. I am so thankful to all of you who love my son and my family and who have prayed unceasingly. There may be an end in site to this long, emotional hospital stay!