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.