Diario de Gavin Pierson
Escrito el Mar 8, 2014 10:01pmGavin was awake at 5:30 am this morning and just fell asleep at 9:30! He loves waking up early because he likes to "start his day". I am glad that with daylight savings tonight he will be closer to a normal wake up time. He was full of energy this morning and was very active, playing Kinect and challenging everyone in the house to a plank hold contest, which he won :)
Gavin's heart rate and oxygen has been stable and he no longer is wearing the all night monitor. We just periodically check it to see where he is at and he usually is at 98%+ for oxygen saturation and in the 90s for heartrate. Perfect!
Tonight before falling asleep he prayed and asked God to please come see him again. It brought me back to almost 2 years ago, when he saw God in the hospital. If you haven't heard the story - a quick version is that Steve and I were sitting in his room, not long after initial diagnosis and he was sleeping. He all of a sudden slowly reached his arm out as if he was reaching for something that he couldn't quite touch. I woke him, and he explained that he was trying to give God a hug. In the weeks following this, he gave more details about what he looked like - how bright and yellow he was, and that he told him to be Brave and Strong.
For months after this Gavin would have tears streaming down his face wanting to see God again. He said he made him feel so calm. When he brought it up tonight it was like he could remember it as if it happened yesterday, explaining all of the details. He is so sad that he has not seen him since. I told him that once he is all done being brave and strong on earth, he will see him again. This put a smile on his face. I pray that this will not be for a very long time.
This made me think about the many, many times I had to envision a life without Gavin on earth. We did not know if he would turn 7, and now he is almost turning 8. When he would talk about missing God, I would almost get angry, and I would beg God not to take him and wonder why he had to show his "calmness" and peace, making it all so alluring for my young boy. I would sob thinking of how horrible it would be to plan my child's funeral, and how we could possibly take another breath without him. Today, I can say that I am glad he knows God, and that I feel God is allowing him to stay. I feel that Gavin has many many tasks still to perform on earth. I no longer "go there" to the dark abyss of wondering how it would be if he was gone.
I am so thankful he is here and is happy. He truly is a very happy kid, despite it all. He has climbed mountains and still has some in front of him, but he's not going to stop climbing. I know that he will continue being brave and strong <3
Spring break - much needed!
Escrito el Mar 7, 2014 6:14pmSo glad the kids have 10 days off and I have 9 days off! We all need this so much. We are not traveling anywhere, but that is totally ok with us! We just want to hang out with each other! A few plans we have are going to the Science Museum, Girls day, night away for mom and dad, movie nights, game nights, relaxing and doing nothing too! Bring it on!
Gavin has had a better couple of days and although he had a rough night Wednesday with focusing and concentrating he is so quick and witty today. He just named all of his drs and their titles (Dr. Z - Pediatrician, Dr. Adams - Neuropsychologist, Dr. Petronio - Neurosurgeon, Dr. Huszar - Neurologist and Dr. Schultz - Oncologist). He was feeling super smart and wanted me to keep asking him questions. It is times like this when I know his brain is feeling good.
One categorization test that was hard for him last summer with his neuropsychologist was super easy today. You have to name 2-3 things and ask him to title the category. Some are easy, some are much harder trying to find the connection. Proud of him and all that he battles yet still progresses most of the time and never ever gives up wanting to beat Joe Bully. Many times he has said he wishes Joe Bully would be gone by "the time he is 8", and because he knows his 8th bday is coming in March, he now has pushed that to "by the time I am in 3rd grade". He is so patient - I am not as patient and he teaches me every day.
Gavin is on day 10 of his 21 day cycle of Palbo. He will finish the 17th, his last day of spring break. So glad he can rest, take naps if needed and have a break while he finishes the cycle out. He goes into clinic next Thursday for labs, lovenox level and neuro-oncologist check up. Grace, Gavin and Gage all have colds which I hope will go away soon! Although I told Gav I love his cute little "cold" voice.
Escrito el Mar 5, 2014 8:50pmGav has definitely had more good days than bad lately. Today was a hard day. He seems so sensitive and tired. Finishing up homework that's due tomorrow was a complete nightmare and it took forever. Every little thing bothered him and he is very crabby. He just laid down and I think may already be sleeping. God I hope he rests well tonight and has a better day tomorrow.It's days like this- when I can see all that he's still going through, and it's really hard and frustrating. I'm so sick of all of this!! I don't want this life anymore- for Gavin, for all of us. The tiredness must be kicking in from being on Palbo again, the emotional roller coaster from not feeling up to par and being so tired. I think the end of last week into this weekend was a glimpse into what he could be like if he wasn't recovering from a surgery or on chemotherapy/Palbo which takes so much out of him. It was so nice to see him that way, even if only for a few days :( I want him to move on- he deserves to just move on!It's times like this when everything we've gone through feels like it's crashing down on us, and we are at the bottom of the rubble trying to get out but we are stuck. It's bad enough we had to experience all of the storms separately- but today it's like we are feeling all of it at once. Gavin is tough but seriously when can he do the things he wants to - when can our daily routine not include needles and lines and meds that make him so different?The thing is - there is absolutely nowhere to place the blame when dealing with illness. It's like a natural disaster. Think about when this type of disaster happens... It's so hard to accept when there is nobody to blame, this is how it feels. Nobody caused this and the hate of it all just hangs around, masked much of the time but then creeps up. Maybe it would be easier if I could blame this on something but I can't. Gavs germ cell tumor happened in utero when some cells that should have gone to his reproductive parts went the wrong way. They traveled midline up instead of down- hence the tumor being on the pineal gland, exactly in the middle of his head. There is nothing I did or could have done differently. I can't even blame myself- it just happened and it totally sucks.If someone tells me these thoughts of frustration are the devil trying to steal Gods glory I may just go crazy. I believe in God- with all my heart but the feelings I have are real- from experience and have nothing to do with letting evil in. It's my life- day in and day out- that's what this is. God is the reason I go to sleep with hope for a better day tomorrow. God is why Gavin is still here. But I am human and this is how it feels some days. This is real, and God knows it.I'm going to fall asleep tonight at the bottom of the pit- feeling like there's too much pressure on us to ever get out. Feeling frustration, anger, sadness. But I will pray and I know that Gods hand is reaching down trying to help us out. Today was just discouraging and hard and I hope Gav feels better and more himself tomorrow. Hope- it's all I have some days.