Today was an awesome day. It started out with a 3 mile run on 3 hours of sleep followed by bribing Logan to get out of bed by offering him a cookie for breakfast...with a side of carrot applesauce then off to preschool on to Justin's class to help out. Picked up Logan from preschool half asleep and spent a few hours watching reality TV although I should have been reading a few books for some upcoming book clubs but just wanted to watch TV and veg. Made some yummy Reese peanut butter cupcakes and no bake protein bites then picked up Justin came home took a nap and went to watch one of the young woman's volleyball game. Oh, the memories that came rushing back. It was so awesome. Since quitting my job I feel like a new person...and I must admit that Dr. Laura played a big part in taking that big step to quit my job (so thank you Dr. Laura...I luv u, most of the time). It's an amazing feeling and I am reassured everyday that this is what I'm supposed to be doing.
I locked my keys in the car at the high school, so the kids and I walked up the street to McDonald's where we waited for a ride to mutual. We ran into some fellow ward members at McDonald's and they assisted in getting my keys out later that night...thank you Bro. Harris and Bro. Swain...you guys are sooo awesome! I was able to catch up with some good friends while at McDonald's then we had a great time at mutual 'til Logan pooped his pants...why is he pooping his pants? I don't freakin' know. He has been reverting back to not getting dressed on his own and not being able to do anything his insisted on doing for the last few months, including going bathroom in the toilet. Not sure what his deal is but needless to say he went commando and had wet short cause I washed them in the bathroom sink at the church.
The best part of today was on the way home from getting the car Justin says to me, "Mom, you are the greatest mom. Thank you for all the surprises today. I love you." He then started singing a primary song '...rainbows whenever there is rain, I want to live the best I can and live with Him again'. Then Logan kissed Justin and leaned around to kiss me (looking back, I guess he didn't have on his seat belt, whoops). I smiled to myself and said a quiet prayer of thankfulness for my two angels.
I was hoping Jason wouldn't findout about the locking my keys in the car incident because I do it often but the boys called him before they went to bed and that was the first thing out of Justin's mouth...Thaaaaaankaaaa Youuuuuu!
An update on Justin...
Justin had an MRI a week ago and it the doctors are using that MRI as a baseline to measure growth every 6 months. As far as the remains of the tumor from his surgery in May we aren't doing treatment right now and will monitor it for growth and possible further treatment in 6 months. Justin finally had his entire back scanned and his spine is clear of tumors:)
When we met with Dr. Lemole I got pictures of the large meningioma Justin had removed in May. I asked him if the tumor was as big as a golf ball and Dr. Lemole said his tumor was bigger. It wasn't the same shape as a golf ball though. Here are the images of the tumor PRE OP:
As far as the tumors in Justin's ears we have been seeing two doctors. Dr. Jacobs and the University whose thesis put a drug into clinical trials as a cure for reducing the size of tumors is telling us not to do the surgery because the odds of him going deaf from surgery are 80%. The tumors are fundal meaning they are right at the internal auditory canal. He recommends we allow Justin to go deaf then they will remove the tumor and hopefully salvage the cochlea and if all went as planned Justin would get cochlear implants. There is no way of knowing how long 'til Justin will go deaf. He needs a hearing aid in the left ear as things are now but his right ear has perfect hearing. His hearing could remain unchanged for 20 years...possibly....there is just no way of knowing. If we have surgery to remove the tumor in the left ear they could possibly salvage the hearing and Justin could have a bone grafted implant which is the type of hearing aid he needs right now. If we don't do the surgery and just wait there may possibly be a drug available to reduce the size of the tumor so that surgery isn't necessary...but when those drugs will be available is currently unknown and those drugs are given through an IV. There are currently clinical trials being done on children ages 12 years and older so they are in the early stages and there are side effects and obviously long term effects are unknown. There are a few other moving parts to this theory but I don't want to go into everything in detail...I still have a lot of questions for Dr. Jacobs.
We are also seeing Dr.Weisskopf in PHX whom has told us that the text book answer is to go in and salvage the hearing in one ear. (Dr. Lemole also concurred with this.) We haven't talked to Dr. Weisskopf since we got this new MRI which clearly shows the tumors so we aren't sure if his opinion will remain the same but we have an appointment with him next week. If we do the surgery and Justin goes deaf he will get a bone grafted hearing aid (which he will probably get without the surgery) so he will still be able to hear out of both ears but there are complications from surgery...this surgery would be another craniotomy which would take 6-8 hours...that makes my stomach churn.
This MRI shows the schwanomas (tumors) in Justin's ears and the meningoma POST OP:
It's crazy how these two little dots are causing so much trouble. Jason and I both feel that our family should learn sign language...no matter what decision we make. I am also working on putting together a half marathon / 10k to benefit the Children's Tumor Foundation to assist in the research of NF.
I know this is corny but my senior year in high school our theme was...right now, it's your tomorrow (Van Halen, the chorus is pretty rockin'). I keep hearing those words run through my thoughts...I need to stop livin' in tomorrow and make things happen NOW! for Justin and other children like him.
Disclaimer: My photoshop skills far exceed the images above...I was just in a hurry.
