Gavin Pierson's Journal
Written Feb 16, 2014 9:23amGavin is so excited for surgery. He is so brave - what child is excited for surgery?? I think that paints the picture well in terms of how badly he wants Joe Bully out of his life. It reminds me (for all you mothers out there who know what I am talking about) of when I was 9 months pregnant and SO uncomfortable and sick of being pregnant, that I was excited to go through a C-section. I wanted to be done with pregnancy as well as know my life with my new baby. Gavin wants to be done with the bully, and he wants to know his life without a brain tumor.
Thursday is the big day. Everyone that has either a Gavins Hope Brain Cancer shirt (grey ones) or the Gavins Army camo shirts - please wear them Thursday and if possible, post a pic on facebook or email me at email@example.com :) I would love to show Gavin all of the support. We will be leaving at 5 am. The other day, Gavin was explaining to someone what is going to happen on Thursday - here is what he said in detail;
First my mom and dad will wake me up, we will get dressed and drive to the hospital. Then we will take the elevator and this woman will put a wrist band on me and my mom will talk to her. Then we will go to this little room and I will get fluids and the doctors will talk to my mom and dad. Then (excitedly) I get to ride on the bed to the big surgery room! Either my mom or dad will be with me and they will give me sleepy medicine until I fall asleep. Then I wake up and I hope Joe Bully is gone! He knows the drill - how sad is that.... yet at least he is not scared because he has done it so many times.
One thing I was going to share that I almost forgot is that we may take a biopsy of Joe Bully before we burn him up. Pfizer asked if we would give them a sample of the tumor so they can research its components with the drug in his system. This may help further their understanding of why it works so well for Gavin and how it may have transformed the cellular activity within the tumor. We are waiting to hear from Dr. P about any risks of doing this before using the laser. A biopsy is minimally invasive, however we do not want to add risk just to get the sample, as the information from it does not help Gavin. Steve and I would like to do it if Dr. P thinks it is safe. Pfizer gave us this drug, for a year, at NO cost - And our son would not be here without it. How amazing is that?!?
For those of you who read a post I made a few days ago (I took it down because I think my stress level at the time of writing it created feelings that do not match how I truly feel) - I was worried about what Gav's dr feels about surgery. I was wondering if I was expecting the same results and if the laser surgery could be the last, or close to the last and if it will result in a cure. I came to the conclusion that nobody knows. And that is the truth, as Gavin is the first patient to undergo this surgery with a mature teratoma! One thing that reassured me, is how Gav's drs want to get the biopsy on Thursday. If the tumor was killed Thursday, there would not be another opportunity to get a sample for Pfizer. The outcome can not be predicted, but I think this push for the biopsy does give me hope that the possibility of a complete ablation is there.
We are getting ready for church this morning. Haven't been there a few weeks with all of the kids being sick. Finally we are all healthy!! Love! Have a beautiful day!
Written Feb 14, 2014 6:54pmI digress from my worrying last night. I think that I just need to take a deep breath and know that everyone wants Gavin to be cured, in the safest way possible and we just do not know, which is hard. This week has been rough. Stress clouds thinking and also allows negativity and anger to come out. I am under a lot right now. I am only human and I need to understand that. I give my worries to God, he is the one who can handle them all, I cannot.
We are moving ahead to think positive and love each other right now. I can not control. I can not change what has already happened. I would like to, but I can't. I also cannot predict the future - and I need to understand that nobody can. Life is so hard sometimes. Some days feel as if everything is impossible - and others like everything IS possible. Everyone feels this in life. I am getting to a point in all of this - where the anger is taking over. It is making me forget how amazing Gavin is and how many miracles he has been given.
After school today Gavin came home and told me all about his Valentines day in school - his favorite part was making the cookies :) I told him that Joe Bully surgery is 6 days away and he did a happy dance. I don't know any kids that are excited for surgery - it shows his courage and how he is where he is today. I am so thankful for him and for my life and the blessings in it. Looking forward to a 3 day weekend with the family <3
On the mend
Written Feb 10, 2014 1:06pmGavin did better yesterday, he ate a little bit and took like 4 little cat naps. He slept all night with no sickness. This morning, he felt ishy still so we kept him home from school. Hoping he returns to school tomorrow feeling better.
He has been teaching me new vocabulary words, like chasm. He informed me that it is a large crevice in the earth. I guess once he told me what it was I recalled it but I am amazed at his vocabulary. It is one of his strengths. When a cheetah was on his show, he informed me that the cheetah is the fastest land animal, and can go 70 mph. Finally - the fastest bird is the Peregrine Falcon - topping out at 200 mph.
I am home today and we are on the couches just being lazy and trying to feel better. He is keeping my mind off things with all of his facts :)