Monday, March 8, 2010

Long Week

You can see all of the his hair shedding all over the hood of his coat.
Normal day at clinic.
{sniff sniff} can you see the bald spots? He has so much hair and I have never been able to see spots but it is shedding pretty badly.
Bad close up of biggest bald spot.



Today is the beginning of a really long week. We have five days of chemo, Irinotecan and Vincristine AND five days of radiation. Vincristine is only on Thursdays and only takes a few minutes to administer but Irinotecan is like an hour I.V. drip, and usually requires a fluid bolus before and a flush afterwards. This means we are probably looking at about 2.5 to 3 hours in the clinic. I am feeling pretty well today but I have a little bit of "unsteadiness" lurking deep down. I am trying to stay positive but it is so hard to always have faith, must be one of my "tests". Sometimes I just really wish I knew the end result and just start preparing myself for the outcome, either way, but like one of my wise friends said "the journey is what builds our character". I also feel that knowing the outcome would invalidate hope, and hope is so wonderful, it gets me through our days. I may have already mentioned this quote but it is one of my faves thanks to my wonderful friend Paige. "Make the courageous decision to HOPE. Even when EVERYTHING around you contradicts this hope" -Dieter F. Uchtdorf. I hope for so many things but I think I am looking too far in advance, which makes me feel like I am balancing on a wobbly bridge. I need to take one day at a time, or at least one treatment session at a time, instead of looking to the summer or even farther, to the end of treatment. I just wish this was all a bad dream and I will wake up tomorrow to our cute little healthy family. I yelled at Belle this morning and she ran into her room, slammed her door, jumped into bed and sobbed. I felt so bad. I didn't need to yell at her. I was just having a chaotic morning trying to get everyone ready and maybe I let me low spirits get to me. I stopped what I was doing and went into her room to hold her. I apologized to her and told her how much I love her. She is having a hard timing adjusting to our "new norm". She feels neglected, and scared, and wonders why Spence is getting all of this attention. He looks normal for now and he feels normal for now but she doesn't understand the severity of his "illness". She is such a wonderful girl. She runs to both of her brothers' aid whenever they need it. She helps me out with Gavin so much and I just hope she knows how much I love her. Speaking of my Gavs, I will have to try and get a picture but he got his first tooth this weekend! On Saturday, March 6, 2010 Belle kept saying "mom I feel his tooth" over and over. Nate told her to get her fingers out of his mouth. I kind of forgot about it until he grabbed my finger and chomped down! She was right, he does have a tooth! I know this post is a little sporadic but I am keep remembering things that I want to write down. I mentioned last week that Spencer's hair is falling out. It is shedding like crazy. When I first noticed it, he started crying, which of course makes me start crying. What a scary thing for him to experience. It has to be traumatic. We are trying to hold on until the heading shaving party on the 20th of this month. The Dr. today told us that he thought he could hold on that long. Pray for Spencer's hair!

9 comments:

  1. I will never forget losing my hair. It came 2 weeks after i finished my first round of chemo. i had just stopped throwing up and was so excited to be feeling good. I was going to bed and ran my fingers through my hair... and there it was. =( i walked into my mom's room and without a word, tears streaming down my face - handed her my hair. we both cried together.

    the next morning, i had my dad shave it off.

    it made me feel like i was in control.

    you're a great mom, holly. we all yell at our kids when they don't deserve it. she knows you love her because you went after her and apoligized. be as gentle with yourself as you are with your kids. this is hard stuff.

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  2. Belle is a strong little girl. When I taught her in sunbeams I was amazed at her stength, faith and understanding. I think sometimes as us adults do suffering a breakdown is natural for kids also. You are a great mom! She will be good! Debbie Garretson

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  3. Holly, My name is Sarah (Fletcher) Jones. I grew up with Nate in the same ward. I just want you to know that my thoughts and prayers are with you and your family. Spence is such a cute guy and has such amazing courage. You are an amazing mother and I will continue to keep your entire family in my prayers.

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  4. Holly, My name is Sarah (Fletcher) Jones. I was in Nate's ward growing up. I just wanted let you know that you, Nate and Spencer are in my thoughts and prayers. I think you are amazing. Spencer is such a cute kid and I am in awe of him right now. I hope for the best for you and your family. Love, Sarah

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  5. Love you! Just keep hoping & praying. That's what gets me through the day - plus I don't let my self sit still - ever :)

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  6. Sara sent me that quote on hope once! i love it! Hope really does get you through so much

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  7. Faith - The substance of things hoped for, the evidence of things not seen.

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  8. I have been following your blog. You probably don't remember me, but we met through a good friend of yours a few years ago. I just wanted to tell you how amazing you are. I am amazed at your faith and endurance. You are truly an amazing mom. Spencer is so blessed to have you and you are so blessed to have him. He is so darling and has such a strong spirit. I will keep your family in my prayers always.

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  9. Jessica! of course i know who you are! thank you for praying for us!

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