Gavin Pierson's Journal
Written Feb 20, 2014 10:04amGavin is in surgery. Our first update is that they are scanning in the interoperative MRI suite. In talking with Dr. Petronio today he explained that they will be using one laser probe. He will be careful in the process, trying to avoid any further issues with clotting as well as the need for extensive steroid therapy.The more tissue the body has to process at one time, the more inflammation, the higher the fibrinogen levels, which can result in blood clotting. I told Dr. Petronio that I want Gavin to be safe, while making progress. Although I would absolutely love to hear there is no more Joe Bully- I want Gavin to come out of this doing better not worse. What I love about Dr. P and his team is that they consider the whole child when planning treatment. I'm sure Dr. P wants the tumor gone just as badly as all of us, but he knows that he needs to tread carefully.I feel more calm today than I have for than any other surgery. I know that the doctors and nurses will take care of Gavin. Our pre op nurse opened Gavs medical file and just stopped to say how his medical file does not match him. She commented on how smart he is after all his brain is endured- and how far he has come physically and medically. I'm so proud of my fighter!
Dreams and surgery in 2 days
Written Feb 18, 2014 6:36pmGavin has been sharing his dreams with us this past week. One night he had a dream about beating Joe Bully. Today he told me about his dream where he was a grown up and had kids. These dreams make my heart smile. I love that he is dreaming of these things so that he can focus on beating this bully. There is another reason I am so happy to hear about these dreams. After Gavin starting having brain surgeries, he stopped dreaming. I actually think he did have dreams, but he could not remember them due to memory deficits from surgeries.
He used to always tell us that he doesn't dream anymore. Now in the past week he has had two dreams - significant dreams that would be incredible if they came true. I am praying this is a sign of good things to come. That Gavin will survive this horrible disease and that he will beat all odds that have been stacked against him. Also, I think this is a really good sign that his brain can now dream/recall dreams. The smaller tumor, improving blood clot - whatever the cause - it is a good sign.
Tomorrow Gavin has a pre-op appointment at 9:30 am at Childrens Minneapolis. He also has PT tomorrow. He has been improving with strength, balance, coordination since the blood clot. He is again losing weight and extra tissue around his face/back/abdomen from steroids. It takes a long time to get rid of this and he was doing so well before being put back on steroids - but as always we push forward.
Thursday we leave at 5 am and arrive at Childrens at 6. Surgery starts at 8 am. I have said this before, and it still holds true - it doesn't get easier. It is always emotional to watch Gavin go through this. We are seasoned, unfortunately, which does help him. Steve and I were just talking about the difference between this and a craniotomy and are so thankful he is not doing that. So many mixed emotions as we approach Thursday. However, I trust Dr. Petronio and his team and I know that Gavin is in the best hands.
I may not get the opportunity to post tomorrow, as I work and then will be getting ready for the big day as well as getting rest. Please keep Gavin in your prayers and please share his story. It truly helps knowing how many are thinking and praying for Gavin. I will update as often as possible Thursday. Thank you for listening, for reading, sharing, praying. Lastly , I will leave you with a letter to Joe Bully.
You have invaded our son's life, his head to be exact. You threatened to steal his future and crush his dreams. You make life hard for him. You attempted to push Gavin and all of us into surrender. We did not put up the white flag. We fought back. Not once, twice - or even three times. We fought back more times than we can count. We did not succumb to fear and lose hope. We work around the difficulties you have given Gavin. We created miracles. We will never stop fighting. You are a bully, and bullies never win. You picked on the wrong child - the wrong family. We have a Joe too. Dr. Joe Petronio. And he is bigger, badder and he doesn't give up either. I hope we soon get to see the end of you, and that you never come back. I hope you realize that Gavin is stronger, and he won't stop until he wins.
Sincerely, Gavin's parents
With hope and love - The Pierson's :)
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 firstname.lastname@example.org :) 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!