Gavin Pierson's Journal
Written 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.
Finally an update
Written Mar 2, 2014 4:03pmI have sat down to write an update a few times in the past week but have been so busy that I never finished one. It has been crazy but good. Gavin's oxygen and heart rate have settled down. His heartrate is in the 80s when sleeping and saturation (oxygen) levels in the 90s. He went to school Tuesday through Friday which went pretty well despite a bus issue we are dealing with.
Gavin has been a little dizzy at times, mostly when he gets up fast after he has been lying down for awhile. His ventricles were slightly bigger on his post op scan last Monday. Could be from swelling/surgery. Gavin only did a short course of steroids this surgery, and was already off them Tuesday. He has been sleeping well and getting up early. He loves his mornings :)
I have noticed some positive changes in his memory and concentration. He is recalling things he hasn't in months/years perfectly, and remembers new events and conversations easily. His long term memory has stayed in tact through everything but his short term memory was quite affected at different times throughout his treatment. He had to do a writing assignment Friday at school and his teacher wrote a note that he worked so hard and did his best writing all year. So proud of him! I am hoping these are all good signs of pressure being relieved and connections forming once again.
We set up Gavin's next MRI and neurosurgery appointment for Tuesday March 25th. We will look at the tumor and see Dr. P. We will get new measurements of the bully after it has had time to shrink up. I am so excited to see what this thing looks like now! I will have never seen a tumor this small in my son's head, as prior to surgery it was already slightly smaller than when we found it. Children's is working on a video from his last surgery and will be reaching out to National media to cover the story. To tell Gav's story and highlight a new treatment for unresectable mature teratomas.
Getting ready for the week - the kids are super excited for spring break starting Friday. We are not going anywhere but will do some fun things locally and have family time. We love when time slows down ;) Gavin is going to get a haircut today which I am sure he will sport well!
MRI/Heartrate/O2 levels oh my!
Written Feb 24, 2014 10:08pmGavin had fun at the wrestling event- he had tons of energy, got tired and perked up when the main event started with his favorite wrestler John Cena. So proud of him - who goes to WWE 3 days after brain surgery- this boy!
Last night we monitored Gavs saturations and heartrate. Normally Gavin has a high heartrate- when resting it's usually in the low 100s - like 105-115. Well last night it was in the 50s. Mostly around 51-54 bpm. This was super concerning as the lowest a child his age should be is 60- also it's a huge change from before surgery. Talk about scary and a night full of beeping monitors.Today Gavin went in for post op MRI and appt with neurosurgery. We will hear more specific details tomorrow but the quick report is that there are no post op concerns and Gav started his blood thinners again tonight. He will start Palbo tomorrow. As far as the heartrate goes, the tumor was removed off the brainstem where it resided for a very long time- so it's likely adjusting to that change as the tumor shrinks, which could cause fluctuations in heartrate.So fast forward to tonight. For the past two hours his heartrate has been great - in the 70s. But now his oxygen levels are all over the place. Last night they were 97-100 and tonight they are low 90s. So one issue better and another worse. I'm praying this will sort out as the tumor takes on it's new small shape. This type of issue may have happened after the first laser surgery but we didn't have the monitor at home to see it.Gavin really wants to go to school tomorrow! He's been begging us to bring him since Friday (yes the day after surgery!). Steve is going to bring him in the morning unless something comes up. He asked me tonight if Mrs. B is going to send home all the work he missed because he doesn't want to miss second grade as much as he missed first grade. So darn cute. I hope we don't have a night full of beeping and that Gavs levels and heartrate stay good. I'll update tomorrow when I have more info about the MRI. Good night!