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.


  1. We will pray fervently that the tumor will shrink in miracle proportions with the radiation and chemo so Spencer can see and be anything he wants! I wish I could help you! I can't imagine going through this with a child and having two other children that need time and attention as well. The Lord will help you find a balance which will change every minute. Be flexible. Remember we are all praying for you too! There is such power in prayer!

  2. My Dearest Boy,Spencer,You know how much I love you don't you. I know you do. So Spence I am going to ask you a big favor. Will you try to show extra special love to Isabelle this week? I know it sounds unfair since you are the one scared and hurting but that is exactly what Jesus did when He was scared and hurting too. I promise you Spencer that if you follow Jesus' example you will feel Him even stronger than before. I know it doesn't seem like Isabelle is scared too but believe me Spencer, she is because she loves you. There isn't much else you can do right now while you are fighting the rabdo monster, but showing Isabelle you love her will actually give you MORE powerboosters against it. I hope I get to see you soon,
    Hugs and Kisses Galore, a please give some of them to Isabelle to, Love Grandma Neina

  3. I'm so sad for all of you..I will continue to pray..I don't know why but when I wake up in the morning I think of Spencer and say a prayer...And at night he is in my thought's.I'm sure its because I have Grandkids that Ilove so much..My GOD be with all of u.And he may let u all get your rest.Spencer picture is now on my screensaver...Prayer's from down south

  4. It was so good to visit with you, Moab really enjoyed the time she got to spend with Spencer.

    I enjoyed visiting with you Holly, let me know if you need anything.

    We will continue to pray and focus them on Spencer and his vision and health.