Gavin Pierson's Journal
Written Apr 23, 2012 1:26pmSteve had a talk with Gavin a couple of days ago that he shared with me last night. He told Gav that God is giving him a test, and he only chooses the bravest, strongest people to do this test. Gavin replied with saying ok dad, I will do it. I think this gives Gavin a simple reason as to why this is happening. I told Gavin that God will help him when he feels sad, or scared. He will carry him when he is weak, but that he needs to show God how strong he is.
Today Gav has continued his sweet talk, and I mean really laying it thick! I have had my hair up for most days since this all started, but had it down this morning. As I kneeled next to him holding his hand, he touched my hair and said I was so beautiful and he was the luckiest kid in the world to have his mom and dad. He also said he cannot live without me... where does he get this stuff?? He makes my heart melt like every second. Then when I was washing his tummy, he asked his little bro Gage to sit by him and hold his hand, because I couldn't. Gage did it, two years old but he sat there next to him holding his hand, and while I was cleaning, Gage tilted his head and in the sweetest voice said "See Gavin, it not hurt". The love they share for each other, at such a young age, is amazing.
The absolute sweetest part of the day so far was when Gavin was trying to fall asleep but was having some tummy pain and couldn't have meds yet... he had me sing to him but I was running out of things to sing so he asked if Katie, Dylan or Laura (3 of my siblings) could come over and sing/play the guitar for him to fall asleep. My brother Dylan came over and sat by Gav for at least a half hr, playing the guitar and singing until Gavin fell asleep. I think it is important to note that Dylan is 19 years old, and was working in his car when I called... but didn't hesitate a second when I asked him to come over. I am reminded yet again of how wonderful my family is. Thank you Dylan for making Gavin more comfortable. And now he rests.
Written Apr 22, 2012 11:03pmGavin gets better every day since his surgeries Friday. A home care nurse came today and loosened Gavins Gtube peg. We think this is why he was still in pain today, it was too tight on his skin. He was awake more today, more talkative and more positive. This happened last week too as he was home for a couple days, he improved. By tomorrow, he should be almost back to normal... And then we climb the next hill of this rollercoaster. I am going to have to get used to him getting just well enough to be put through it again with chemo. He will be sick, then we will let him recover, each cycle for four or five months. The difference is that he doesnt just get to hop on for the ride and enjoy all of the turns, twists and hills. He has to do all of the work. His little body has to continuually be put through getting sick, recover and repeat. My baby, I just want to take it all away.
I used to love rollercoasters, but as I get older, I am a little more apprehensive. Grace, my daughter, loves them and Gav isnt quite tall enough for most of them. You see, as kids, we do not think about all of the terrible things that could happen while on the ride. Kids just remember how fun it was, or the best parts, even if parts of it were scary. I am hoping this will be true with Gavin on this rollercoaster of healing... That he will not worry about all of the things that could go wrong. I hope that he will not be apprehensive about what comes next, and will just look back one day and see the positives. All of the mommy and daddy time he gets, all of the amazing doctors and nurses he met, the presents, the popsicles for breakfast and pancakes for dinner. The buffalo wild wings whenever he wants. I pray that God continues to let him be a kid, without the worry that adults would have in the same situation. I hope he forgets about the parts that were scary, and remembers the love everyone gave him.
I am going to try really hard to look at his treatment one week at a time, and not think about all of the hills, twists and turns. Because I have hopped on some scary rides before, and afterwards I have realized they were not as bad as I thought. The biggest thing I have learned through all of this, is to let go of all "plans" or "pictures" of what my life should be. From the time I was pregnant, I planned and planned how my life, my childs life is going to go. But no matter how prepared you are, no matter how many ducks you have in a row, unpredictable things will happen. So rather than google searching the ride, reading reviews, assuming, mapping, planning how I think it will go, I will just hop on, holding Gavins hands the whole time.
Mom, I can feel me getting smarter
Written Apr 22, 2012 8:06amAfter we found about Gavins brain tumor, I could not help but think of all the times he would freeze and say, "Mom, I am getting so smart right now, I can FEEL my brain getting bigger right now". Either this is a coincidence, or he could maybe feel the pressure, and thought it was just what happened as you learn and get smarter. He always said his brain was so big, even bigger than some adults. I would have never made that connection before, as Gavin always says funny things. But what if, I did by chance think he may habe been describing pressure and brought him in a year ago? Would they have just been able to remove it rather than chemo, multiple surgeries, and radiation? I am not by any means blaming myself, but I have the right to wonder for a minute.
Gavin is still in pain from the G tube and has a temp of 99 on the cheap thermometer... I think you are supposed to add a degree, which would make sense because mine was 96.8. The tylenol has not brought it down which could mean an infection, so I will be calling the dr this morning. I have realized that I have temporarily switched careers from being a teacher to a nurse. I had to learn how to flush his g tube, since it has to be done twice a day. I keep a record of all temps, meds, when he goes to the bathroom, everything. And this will be even more important as he starts chemo, because there are so many things to watch for. Hoping we do not have to go back in to the hospital today.
I just want to thank everyone for everything. Whatever you have to offer is amazing. Food, help with kids, things to keep Gavin happy and comfortable, financial help, moral support, prayers. We need it all right now. Now that I know I will not be able to start work in the fall, and have to be in another state for 6 weeks, I am worried about my job, losing my health insurance, paying for everything with no income coming in. My family is planning a benefit which should help financially, and I am going to figure out the job stuff. Steve will be in his final semester of skills this fall, and we need him to finish that, so we have to figure out whether we take all kids to Indiana, or just me and Gavin go and they visit a couple times? My head is spinning, but I am so lucky to have an amazing support system that have given me the permission not to worry, they will take care of me.