Sunday, February 28, 2010

Longest

Today is the last day of the shortest month of the year. The longest month of my life. A whirlwind of emotion, appointments, and flashes of life. I scrubbed the kitchen yesterday. The freezers, the fridge, the floors. It was the first time in a month that I have gone through the motions of normalcy. I even made dinner. Ham, potatoes, and artichokes. The kids devoured the artichokes. The new month approaching holds many new things for us. We hope for miracles but know there are going to be lots of sadness as we travel along. Before the end of this next month we will go through at least 20 sessions of radiation and four clinic chemoes. It is hard to imagine that with all we have been through this month the months to come will be far more physically excruciating for Spencer. We ask that you continue to pray for our family.

Saturday, February 27, 2010

Bad Dreams, Benedryl, and Barf (and a really long post, sorry)

Cards and letters from friends.

Moab and Spence reading one of the letters.

Here is a picture I found online of the Varian radiation oncology machine. It's totally "spacey".

Yesterday was our radiation "dry run". It was actually very cool and I got to watch the whole thing. I didn't take pictures because I was intimidated by the enormous, cool looking pieces of equipment, and will ask if I can on Monday. They put him on this raised table, put a round pillow under his knees, and strapped down his feet. His head rests on a plastic contraption and the "mask" goes over his face and snaps down into the head rest. The table is mounted onto a circle track on the floor, allowing the table to move out and around the floor. The machine can move in all different angles allowing for the "perfect" position to zap the freaking tumor! When he first got strapped down, he cried. He was so nervous on his way into the radiation center because he was afraid that if he moved the "laser" would zap a spot it should not be zapping. Sweet boy. The nurse explained to him that if he felt like he moved he could put up his hand and they would check his position. She was awesome. He felt much better. It was really hard for me to watch him on the monitors from another room. It almost looked as if he were abducted by aliens and put onto this weird contraption. Super overwhelming. The Radiologist, Dr. Thompson, came in and checked the techs positioning according to the xrays of the tumor they were correlating, and was very happy with all of the coordinates they set up. He told me that the tumor is wrapped around the optical nerve and as of right now there is no way to get around causing some damage to it. SO he is going to change the radiation schedule a little. He will do about 4 weeks of radiation, and he is hoping that along with chemo that the tumor will have shrunk enough to be away from the optic nerve and allow him to reassess the last part of treatment. So after the 4 weeks we will do another MRI, check the "destruction" of the tumor, hope that it is not near the nerve, and continue with the rest of the protocol. It was a pretty disheartening to hear that there is a possibility of vision damage. That side effect was not in the cards before. I ask you all now to pray specifically for NO DAMAGE TO THE VISION. He wants to be a surgeon when he grows up and I don't think that he will have that opportunity if he is blind in one eye. After the setting of coordinates was done, they brought him back to the "control panel" where we all were watching him and showed him the SUPER cool xrays of his face. He enjoyed that. We ran some errands when we were done, we went home. Jena, Moab, Nahvi, Heather and Aiden come over and dropped off a huge envelope of letters and cards that the kids at school had written to Spencer. They go to the previous elementary school we were at last year. Then my dad, Suzi, and Raynee came over with my dad's DELICIOUS homemade ice cream. He made strawberry for Spence, and then a big container of apple pie ice cream. HEAVENLY. Nate then headed off for some guy time and I began the bedtime process of flushing central lines, meds, stories, etc, etc. I gave him his first two meds, Benedryl and Phenergan, and he vomitted almost immediately. He really needed these two medications to get him to sleep and feel better so I had to re-administer them. He kept those down and I had to give Gavin his because he was SCREAMING from "teething" pain. I decided to give Gavin a super small dose of Benedryl because he had not slept for 2 nights and I was beyond exhaustion. Let me just say it did not work. I think he woke up more last night then any of the other nights. Then shortly after I put him back to bed somewhere in the early morning hours, Belle came into our room and said that she had a bad dream. Never in her 5.5 years has she ever come in with a bad dream. I usually make my kids sleep on my floor if they come in, but I figured that she must be really struggling if she is having bad dreams and needed me, so I let her sleep in my bed. I have felt so guilty for not giving her the time and energy she needs from me and now she is having nightmares. To top off the lack of sleep, the sleep I did get was also filled with nightmares for myself. Mostly dreams that broke down my confidence and how I feel about myself. I had about 50lbs to lose from having a baby 9 months ago and just started working on myself when this tumor entered our lives. I am an emotional eater and look to it for comfort. So I dreamed of being 4oo lbs and nobody wanting to be around me and just stupid stuff like that. It was draining. Last night was definitely not a night of sleep or re-energizing. My soul needs renewal. Good thing it is Sunday tomorrow.

Friday, February 26, 2010

Dear Abby,

What is the proper cancer etiquette? When I see someone in the store that I haven't seen in awhile and they ask "how are you?"do I answer, "I am doing well, how are you?" and go about my day? or do I say, "Crappy, my son has cancer",thus making for an awkward situation, and a bummer day. Why is it that our culture makes light of such a heavy question, "how are you?"?

GNO!





What's even better than a typical girls night out? A girls night with MY friends, pedi's/mani's, and CHEESECAKE! We went to Cameo beauty school but it was like a really nice spa. Highly recommend going there! Then we went to Cheesecake Factory for dinner. Although I missed Spence a bunch while I was out, I had such a fun time with Melissa, Melly, Mandii, and Liz. I love you girls! Thank you for making me laugh when I was having a hard day! Mandii, sorry for posting this picture of you but it made my day to see it (and my son has cancer! so sorry I can do what I want!).

Thursday, February 25, 2010

Stage 2: Anger

I felt about as gray as my view from the waiting room today.

My scared little boy being so brave for the PET scan

He got to ride a wagon up to radiology.
Chemo day. Eating a kudos granola bar. He LOVES these! Thanks Grandma Suzi for the snacks!
Spence taking pics of tired me.
Don't know why this is sideways. This is a picture that Spencer painted of himself fighting the big, black, red eyed and mouthed tumor.
Mel and Ry came over the other day and Spencer taught Melanie how to play guitar hero!

On Tuesday night I got a call from the Primary Children's that Spence was scheduled for a bone marrow aspirate and a lumbar puncture (bma/lp) the next morning at 8. I thought this strange because we were not previously told about it, but because we are so new to the routine I went along with it. We were supposed to check in, go up into the Oncology clinic and then they would send me down to the unit where the bma/lp was scheduled. I was so tired and totally planning on having the day free so I felt drained by this. We woke up early dropped the kids off at my dad's (because my stepmom is an ANGEL) and headed up to the hospital, which is about 45 min. away. We check in and head up to Oncology and they tell me that we are not scheduled for that day but the next day for chemo, which we knew about and wondered who ordered the bma/lp. They did some searching and came to the conclusion that the NP (nurse practioner) who discharged us from the hospital must have made a mistake. They were soooo sorry even though it wasn't their fault but they were able to give him his chemo a day earlier so we didn't have to come up today! yay! It actually turned out to be better for our schedule. Okay so today was an even earlier day. I had to get up at 5 this morning to be ready to be at the hospital by 6:30 for his PET scan. We got there by 6:30 but had no idea where to send us because they do not do PET scans very often and even more rarely for children (of course). He had to be under anesthesia for it because he has to stay very still for the scan. Let me tell you, over exhaustion and having a child with cancer do not mix well...at all. A scan is so mild compared to all of the other procedures he had but when I was holding his hand as he was crying in fear of the syringes with needles that they were filling (for is i.v. not his skin) I started to tear up. I can't even begin to imagine all of the fears he has, not knowing what is happening to him. After he was done and was waking up in PACU (post anesthesia care unit) he was screaming and crying. He had an oxygen mask on and was just sobbing, saying his throat hurt, which is normal from intubation. Later when we were in the car on our way home he started to cry and he told me that his throat hurt so bad, he thought the tubes were still in it (the meds make you confused when you wake up and he thought the oxygen mask were tubes) and he said that he wanted to tell someone how bad he hurt but he "couldn't move an inch". he said "i could still think and feel but i couldn't move or talk, and it hurt so bad". Oh my son, my heart breaks for you. Every pain, every fear, I wish I could take it all away from you. I wish I could protect you from it all but you have a strength building trial in front of you, I can only hold your hand and weep with you. What a horrible scary feeling for him. My heart was so sad. We stopped and got chili cheese fries (his new proclaimed favorite food) and a pina colada slurpee from 711. I am exhausted but I am going out with my sister-in-law, Melissa and some of my best buds for a pedi/mani and some dinner! It is much needed. P.S. My dear, dear Kerilyn in TX sent me a "sometimes you need to DANCE" mix cd. Oh how I needed it! I can always rock to some Miley and Jonas and Len!!! So to the point of my title of anger... I haven't felt like I have really gone through the normal stages of grief. I have held it together pretty well. Today I faced anger. I went to 711 to get Spencer's slurpee and he still had his name bands from the hospital on. The super nice cashier said "oh you look like you don't feel well today", and then she proceeded to say "my daughter has a double ear infection." I looked at her and said "well he was just diagnosed with cancer" in a not so tender tone of voice, and the poor girl did not know what to say. Wow! Anger does not suit me. I don't like it and now that we got it out of the way we can move on! Sorry nice concerned girl cashier at 711 in Riverton.

Wednesday, February 24, 2010

LOLLY BAGS!

My friend Melanie L. makes started making these awesome bags and wants to make them to support Spence. They are almost as beautiful as she is! To order go to her site http://sandinthecracks.blogspot.com/2010/02/life-changing-moments.html

Today was a pretty good day with some misunderstandings, but good nonetheless. We have to be at the hospital at 6:30 in the morning tomorrow for PET scans and some other fun stuff, so I will have to save blogging until tomorrow. Sweet Dreams.

Tuesday, February 23, 2010

Our Fabulous Homecoming






Saturday night when we arrived home from the hospital late in the evening we were all drained. Spence had been saying all day that it had been a really bad day. He had finally let his emotions catch up with him and was emotional all day. He cried over everything and I let him. My wonderful friend Heather, who has many loyal blog readers all over the country, and all over the world for that matter posted an awesome blog a couple of weeks earlier, {operation: support our super spence}. She asked her readers to send cards to Spence so that she could put them all over his walls to be greeted with when he got home from the hospital. When we walked in the door there were Mylar balloons tied to various places in the living room, dining room and up the stairs. I asked him to come upstairs with me even though he was tired and feeling down. As soon as we walked into his room he was a completely different person. His spirit was lifted so high that he didn't even go to sleep until late, late late. He was so excited. Cards were posted all over his walls and gifts were heaped onto his bed. These are people who don't even know my guy personally but have fallen in love with him through our blog and through others who love him. It was truly amazing. We are so lucky to have friends from all over supporting Spencer's spirit and joining us with others to begin new relationships! Thank you Heather and all who supported this "operation". It was a complete success!

Hey Baby What's Your Sign?!

This is so cool! So awesome to have so much support!
video

Monday, February 22, 2010

RADiation






So radiation starts on Monday. At first I was really hoping for a miracle that we wouldn't even have to do radiation, but when both Oncologists came into our room last week to tell us that they wanted to start it in a couple of weeks I felt really good about it. Dr. Thompson, the radiation physician also came and visited with us on Friday evening and gave us a thorough description on the procedure. Intensive Modulated Radiation Therapy (IMRT) is the mode of radiation that will be used for Spence. Click on the link and it will tell you all about it. It is so precise and pretty dang cool. In the section under "Is there any special preparation needed for the procedure?" it describes the simulation we did today including the "special device mold". He did not, however, have to undergo any tattoos today! The mask is put into a fluid that makes it flexible and then they put it against his face and stretched it and locked it into place on the scanner. They then put cool, wet clothes over the mask to harden it into place. It looked pretty dang uncomfortable, and the poor guy cried. BUT he does get to keep the mask after he is done with treatments, we will have to be extra creative for Halloween! We have one more simulation/dry run for all of this on Thursday (along with a PET scan and more chemo) and then we start his radiation treatments on Monday. His protocol for radiation is 5 days a week for 5.5 weeks. Radiation is measured in centigrays (Gray is named after the doctor who pioneered the technology) . Each session is 180 centigrays and his prescription is for a total of 5400 centigrays which equals out to 30 treatments of radiation. The actual session itself takes only 2-3 min but with prep it takes a total of 15 min. I just feel sorry for the little guy and I hope he understands how important it is to zap the crap out of this horrible tumor. I asked him how he felt about the Rhabdo and he said "I HATE it". He never says hate. After the simulation he wanted to get a hot dog and a BIG Icee at Target. He also wanted 3 bags of Cheddar Chex Mix. We also ended up getting Chocolate Sundae PopTarts and caramel corn. The first day he really started feeling better in the hospital he wanted his Cheddar Chex Mix and he said "I found paradise in Cheddar Chex Mix". LOL! If Cheddar Chex Mix is what he wants, then that is what he will get. I will buy him an hundred bags if I have too!


Sunday, February 21, 2010

First Day Home

Today I feel like I got hit by a bus. I guess in a lot of ways I did. A big fat cancer bus. I slept pretty well but it was not sufficient enough to catch up to the severity of my fatigue. I went to church and was surrounded by so many friends. So many great friends. Nate picked up Spencer's prescriptions in the morning because the pharmacies were closed last night after we got home. He had TEN freaking prescriptions this is not including his eye ointment that we brought home from the hospital. Two pharmacies (the first pharmacy didn't carry everything we needed) and $200 and something dollars later Nate came home with the "drug store". Later in the evening my dad and his family brought over dinner. My stepbro Logan made us the MOST DELICIOUS homemade pizza ever for dinner. I am still full! Spence found a comfortable spot next to my dad and fell asleep. After they left I, too, participated in an evening nap and woke up to Nate, Belle and Gavs watching daddy's Ipod on Belle's bed. I love my family. Tomorrow Spence goes in for his simulation to begin radiation. I will go more into detail about radiation, our homecoming and the last day at the hospital tomorrow.





Saturday, February 20, 2010

I had my camera in the car so Nate took a picture from his cell phone! WE ARE HOME! Yay! We have to go back to the Oncology clinic (outpatient) next Thursday and IMC (Intermountain Medical Center) for radiation simulation (prep) on Monday. But we get to sleep in our own beds at least for another 4 weeks as long as his blood counts look good. I will go over all of that information tomorrow! I am exhausted! We had a wonderful homecoming and I will blog about that later too! GOODNIGHT! I am taking a Unisom and Nate is going to take care of the children tonight!

We {heart} Family

Grandma Suzi came and brought Spence her yummy delicious cinnamon rolls, and Belle and Gavin. It was so good to see them, it had been a few days. Gavin is not old enough to visit on an immuno-compromised unit so I stayed out in the lobby with him. While I was out in the lobby my cousin Becky and my uncle Mark walked up. What a pleasant surprise. They brought him the super cool visor hat WITH HAIR! it even looks like his spikey hair except with bleached tips. Logs, Raynee, and Arza also came to brighten up his night! We are so thankful for family. Spence is so thankful that he even gave a "full smile".






Gifts Galore

We were visited yesterday by gift bearing friends! Kevin is one of our great family friends and stopped by yesterday to see Spencer and bring him some AWESOME pajama pants and pillow case made by his wonderful wife Kim. I can't wait to go home and put them on! Then one of Spencer's classmates and his mom came to visit. She is the most awesome mom in Spencer's class and she put together and made a quilt for him. She had all of the kids trace their hands and color it on their own square and made it into a rag quilt for him. She is amazing. Before this year we didn't know her that well and she has become a great support to our family. She also brought Spence some rootbeer and fun card games, and a bag for me with awesome homemade cards and diet Dr. Pepper! Lovely! When we got back to our room Miss Cleverly, Spencer's first grade teacher from an elementary school other than our current one hunted us down and came to visit! And we are sure glad she did! She brought Spencer an awesome Utes mug, which had to be a huge trial for her since she is a BYU fan! She also brought him more rootbeer and a cool water coloring book. He got a cool "dr. dog" from darling Julia, the tech who helped in with his two surgeries. Grandma Cindy brought a Superman shirt, Superman action figure, and a cool book. Aunt Melissa brought too many gifts for us to count! I didn't get any pics but she brought a SCHLOAD of stuff for all of us, including an awesome Superman shirt, Bakugans, books, Legos, and much more! Saunie started our day off great with a delicious lunch from Costa Vida and brought Spencer a delicious strawberry "Longboard". We are so lucky!














Tomoko

Tomoko is our Japanese nurse that helped us for most of our time here during the day. She is just so wonderful. She made Spence some cool origami boxes and a crane. She brought him a rootbeer float (his fav) and a bunch of fruit loops! I hope we get to have Tomoko again the next time we are here. She made things just that much better.




Cancer Day

This is Mike. He is the CLS (Child Life Specialist) who helped Spence learn all about cancer. He took the time to draw normal cells and mutated cancer cells, talk about chemo and what it does and he helped him insert a "double lumen" Broviac into the back of his buddy. The Broviac really is inserted in the chest but he wanted to see it well on the back. When Mike was helping him with the faux Broviac he just brought one tube to insert and Spence says "can I get a double lumen?" Everyone was so impressed by his knowledge. His nurse asked him why he was so smart and he said "because of my mom" {smile by me}. This was a big emotional day for all of us but he is so strong. After Mike left, he said "mom, I really like that guy." He said that to me about 3 or 4 times throughout the evening. He said that he made it so much easier for him to understand everything. Thank goodness for CLS! Thank goodness for Mike! Spence made his hospital buddy look like Ben 10 and even drew his biopsy scar on the neck.