Wednesday, February 17, 2010

Chemo:Day Two, Hopekids, and a Slab of Heaven

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
My 'baby' cousin Brent and his friend Josh.
Some of our dearest friends, Kristi, Kaylee and Ethan.
Um, deliciousness!


  1. I'm so glad I got to meet both of you yesterday. Great that you made the Bionicle already, Spencer. That shake and bowl of Fruit Loops must have given you lots of energy! I look forward to seeing you at many HopeKids events in the future.

    Amy (HopeKids)

  2. Love you guys! We need to come visit again!

    Hang in there Spencer! Hang in there All of you.

  3. Hey Spencer, it's your uncle Kevin in California. I've been going through what you are going through for the past 5 months already. Spencer, I can't tell you why we are going through this right now, but I can tell you this, even though this may be hard on our bodies, it can have no effect on our Spirits. The one's that Heavenly Father sent us to earth with. I also want yo to know that you have a right to ask for the Holy Ghost to give you comfort and peace, at any time. Our Heavenly Father can't take away all of the pain, because that is pasrt of the experience that we are to have and learn from. BUT, thee have been many times when I was in terrific pain when I asked Heavenly Father for a blessing of having the pain go away, and He did. You are a child of God. The spirit He sent you to earth with is in you now. He, and your brother Jesus Christ, and the Holy Ghost will help you through this, if you ask. I have fun reminding my doctors of all the miracles that have happened in my past 5 months. Look for, pray for miracles, and you will have them too. We love you and pray for you. Count your blessings. Count the miracles. Love. Uncle Kevin

  4. You don't know me but I'm a coworker of Saunie's and she's been telling me about Spencer. I'm so sorry to hear about this scary thing in your lives. I was telling Saunie (who thought I should pass it on to you) about my husband and his childhood bout with cancer. To make a long story short my husband was diagnosed with Acute Myelocitic Leukemia at the age of 8. At the time there were only 8 other children in the country who had this type of Leukemia. He went into remission once and then the leukemia came back when he was 10 years old. They did not expect him to live through treatment again. He had full body radiation and chemo and then they finally decided to do an ontolagas bone marrow transplant (where they took his bone marrow out, chemically cleaned it, and then put it back in, a new procedure at the time) and he went into remission. He's been in remission for 15 years now and is considered medically cured. I just wanted to let you know (I'm sure you already do) that all of this is in Heavenly Father's hands and that patients are beating the odds everday. Our thoughts and prayers are with you and your family! Keep the faith!