Today was a crazy busy day. Spencer spent most of it sleeping, while I talked with the nurse practioner, oncologist, social worker (helps with the needs of the patient and families aside from the medical aspect), the nutrionist, and the Child Life Specialist who helps patient and families cope with the illness and all procedures. On top of all of that I also had to take him down to imaging for his MRI. Busy tiring day, emotionally. Lots of new info. I learned that while taking care of Spence and his bodily fluids (urine, vomit, feces) we have to wear gloves, heavy duty gloves up until two days after his last dose of chemo. We have to wash all of his clothes and blankets used during chemo through two wash and rinse cycles. This is pretty heavy duty stuff, and it is going into my son's body. The social worker is referring him to Make A Wish Foundation (yay!). That is something he can look forward to after treatment is done next year. Just to clarify, Make A Wish Foundation, is for anyone with a life threatening disease. You do not have to be terminal, that is a misconception. She also set Isabelle up with a group called SuperSibs, for siblings of cancer patients. The Child Life Specialist was wonderful. He is going to come back tomorrow and talk to Spencer about his "situation". We still have not used the word cancer to tag his tumor and the specialist is going to tackle that tomorrow. This is something I am worried about. I think protecting him from the negativity of the word has actually been a safe haven for me. I feel that not using that has been my sort of denial about the whole diagnosis. Cancer. It is just so yucky. Cancer. I just need to accept it. (Gulp) My name is Holly and my son has cancer (strong breath out). Then Amy from this wonderful organization called Hopekids came to visit us today. They have a Salt Lake chapter here and they put together fun activities for "hopekids" and their families. Just a few examples of the spirit lifting they do for these kids are, Disney On Ice, movies, plays, and monster truck jams. So fun! We are scheduled to go see the Wicked Wizard of Aaahs off Broadway on Monday if Spencer is feeling well. Next week we there is a story time for Belle and Spence at Starbucks, in March we get to see a private screening of Alice in Wonderland. We are on the waiting list for Disney on Ice. It is full now but if there are any cancellations we may be able to go. All of these activities are free of charge for Hopekids and their families. So super cool. Anyway, Amy sent an email that she would be at the hospital today if any inpatient Hopekids wanted a visit. She brought him a Bionicle and a PushPop. Wow. What a great organization. It is nice to have hope in a grim world. Later that day our great friends, Kristi, Kaylee and Ethan came to visit. They brought him a super cool frame that he can decorate himself. I think we may put a picture of Belle and Gavs in it to take to the hospital when we are inpatient. Earlier in the day when we brought Spence up from imaging my cousin Brent and his friend were waiting in the room. Fun boys, sorry, should I say, men?! :) That was a great start to the afternoon. So after things started calming down Spence ordered his spaghetti and meatballs and I went down to the cafeteria to grab a sandwich. I was disappointed to see they were all gone. I searched the cooler and found this slab of heaven calling out my name. A fresh mozzarella sandwich with fresh basil and tomato on foccacia. Um yeah. Let's just say that sometimes even through the dark clouds the Lord gives you a sunbeam. A delicious sunbeam. I decided that a nice big diet Dr. Pepper and some Baked Lays would pair nicely with my slab of heaven. I am now enjoying a nice evening with my baby while he makes his silly jokes and plays Kung Fu Panda on the XBox 360 in his room. I will cherish this moment.
The ominous Sigma pump.
Just chillin while receiving chemo.
Thanks for the Bionicle Amy! Made for a fun night!
Amy from Hopekids.com
My 'baby' cousin Brent and his friend Josh.
Some of our dearest friends, Kristi, Kaylee and Ethan.