Thanksgiving @ Disney Land & Surgery

We took the kids to Disney Land for Thanksgiving. I hadn't been there for quite awhile and it was the kid's first time. It was seriously magical. It was a big treat to see Chelsea and Justin as well. We want to go back every year. Perhaps on our way to visit family for the Holidays to miss the crowds next time though ;)

Almost all of my Christmas shopping is finished and frankly I'm becoming dis-functional as Justin's surgery grows closer (which is probably a good thing because I'm spending WAY too much $$$). Justin's surgery is scheduled for 7:30 a.m. Thursday. It's projected to last 4-6 hours. I'm hoping we're finished before noon. The surgery is at Barrows then he will be moved over to PHX Children's Hospital immediately following the surgery.

Here are some pics of our Disney/CA Adventures Trip:

 Waiting in line to ride the "Cars" ride. Our first ride...which we rode

twice and only waited 20 minutes for. Best ride ever!!!

 Logan pants with his mow-hawk.

 Justin chillin', waiting for a ride to start.

 Logan pants on the Merry-Go-Round.

Luv these 2! 

Splash Mtn before the Splash

First time on Splash Mtn...all Logan could say afterwards was 'Oh crap'.

2nd time on Splash Mtn....we got smart then proceeded to ride 3-4 more times. 

 Tower of Terror...I had no idea what this ride was. Poor Logan

was crying afterwards. If I knew the craziness of the ride I

wouldn't have took Logan. Totally a thrill...Justin loved this ride,

I think we rode it 4-5 times.

 Justin and Jason in the middle row. Tomorrow Land was my favorite.

 Again on Space Mtn with Justin and Justin in the back (can't see Justin),

Chelsea and Jason in the middle and Justin's parents posing in the front!!!

Luv the poses.

 Justin in the Treehouse.

Logan pants playin' on the railing as we waited in line.

Prayers

We went to Vegas a few weeks ago for my cousin Nick's farewell. He is going to be serving in Mexico. I love this picture because it is the beginning of another seed of truth planted in my children's hearts. I'm so grateful for Nick's fatefulness in serving a mission...so proud of him and all my cousins/family who are setting a good example for my kids.

I love seeing my aunts, uncles, cousins and grams...we had a great time although the trip was way to short. Jason and I snuck away and visited one of Jose Andres' restaurants (and spent an obscene amt of $). The food was Divine and worth every penny (or so I thought until the government shut-down and now Jason is working for free...doh!!!)

Anyways, there is always something happening in life...no matter what the world is throwing at us I feel comforted to know that I have the truthfulness of the gospel in my life and that everything is going to be okay.

Jason and I are headed to the Temple tomorrow and are asking for prayers on our behalf and Justin's. We have done our homework...talked to lots of doctors, gotten second opinions, spoken to others in similar circumstances, read literature and prayed and fasted and now we are going to the Temple. We just want to be 100% sure we are doing what we are supposed to do for him...no regrets!

Thank U Thank U

CHOICES

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.

Time Flies

I can't believe how fast the summer has come and gone. We had a fun summer and the heat hasn't been too bad. We have had a lot of monsoons lately so it has been really humid. Here is an overview of our summer and things to come:

Tressler family reunion at Bear Lake. Doing what us Tressler's 'do' best...eating.

We made sand art with candy sand. Yumm-o.

Logan with cousins Chloe and Kaylee

Logan at the beach

Justin at the beach

Logan and Jason on the boat. Logan loved the boat...
Justin on the other hand didn't like being on the boat at all

Justin on the tube...safe on the beach

Chillin' at the beach

We headed to a cave up the mountain. Very interesting.

Group photo. The peeps not in green are my cousin Jeff, his wife Kim and their kids.
Also my Uncle Ernie, Aunt Margo and Aunt Lucy whom we hadn't seen in 20 years.
It was great to see them, probably the best part of the Tressler family reunion.
We were missing Leanne who was recovering from delivering baby #6...yo go girl!

Justin playing air hockey with some of his cousins.

We headed to 7 Peaks in Provo in between the two family reunions.

Going down the lazy river.

We headed up to SLC and spent a few days with Kami and Jason.
We hiked up to Donut Falls with Kami.

We met my dad in SLC on his lunch break where he treated us to some
food we had been wanting to try out for awhile @ Bruges Waffles & Frites.
Thanks Dad!

Jason and I shared this bad boy called a 'Machine Gun'. It has sausage on the bottom in a fresh

baguette roll then layered with their award winning french fries and topped with this spicy, yummy

sauce. It was too die for. Loved it, loved it! We will have to visit this place on the regular.

Main reason for the visit was to get one of their L'eige waffles. Basically a waffle that has yeast in it.
It wasn't a disappointment...especially with that HUGE scoop of whipped cream. So heavenly.

We then met Kami and Jason's parents at Los Taquitos, which has been featured on the Diners, Drive-ins and Dives. I feel bad we didn't get any pics of Kami and Jason...just the food. Sorry sis!

Now on to Jason's family reunion at Bear Lake. Jason working on his panoramic skills. Looks good J.

Logan and Justin with some of their cousins. Trent and Addie.

Eating licorice on the hammock.

We all went through the Manti Temple with Ali to get her endowments taken out in preparation for her mission to Reno, NV. It was an amazing experience and I'm sure even more amazing for Janet and Ardean to have all their children in the Temple for the first time...all together. It was very special. This little cutie was blessed after the Temple session. Maree is such a sweet baby.

Cousins chillin' in the water on the trampoline. Good times.

My father-in-law Ardean, baptized this man (Jean Claude)...30-40 years ago while he was serving his mission in Australia. Jean Claude moved to France and him and his wife (Natalie) were visiting the states and were able to do a session with Ardean and Janet while we were in Manti. I sat by them at the luncheon and asked where they were living and when they said France, I said...'oh, my sister served her mission in France'. Come to findout Jean Claude and Natalie were the Branch Presidents in the mission when my sister, Heidi and her now husband Chris were serving. They actually have pictures of my sister when she was serving in France 15-20 years ago. Very small world...it was cool to be able to make a connection with them. Very nice couple...and do I look like an amazon woman here or what?!?!?!...geeze. I'm tall.

Paella anyone?
Jason and his Sous-Chef Mark, made Paella for us. They did not disappoint.

Sous-Chef Mark at his finest;)

My mouth is seriously watering. This is the chicken paella.

The start of the seafood paella.

We are always with family for Justin's birthday since his birthday is in July.
He is opening his gifts here. Happy as can be. He is now 7!

Hangin' out with cousins.

Logan, Campbelle & Addie. One of the few times Logan
wasn't torturing one of his cousins.
The kids had such a great time at the reunions and it was so great to have
them both at the same place so we didn't have to travel too much in between
and were able to spend time with both sides of the family. Thank you to
everyone who put in time and effort planning and making the reunions successful.

Jason found Logan under the desk one night when he returned home from work at 4 am.
Logan has discovered monsters and being scared. He is a fruit cake.

We invited a few friends to see Despicable Me 2 and then to McDonald's
for a small birthday party when we returned from Utah.

We received this from the Christensen's. I was so touched...it's so cool
to have such great support. We love seeing this everyday.

Justin started 2nd grade yesterday and Logan starts preschool next Tuesday. Justin is really enjoying 2nd grade and Logan can't wait to start preschool. Justin has healed very well. He is handling everything extremely well.

Jason and I both had MRIs and things seem to be clear...so we don't have NF2. YAY!

I got a call while I was writing this Blog informing me the results were back from the genetic testing and Justin definitely has NF2. Even though we knew he had it...getting the confirmation made me sick to my stomach. I hope research has grown and there is a cure other then surgery when the time comes for Justin to have children. His children will have a 50% chance of having NF2. I don't want him to have to make hard decisions. I want to get involved to help raise $ for research and I plan on devoting more time to NF2 in the coming months to make this happen.

A River Crossed

We have crossed this first river and it's nice to be on the other side. Justin is recovering so well. He is practically back to his normal self. I have to warn him to take it easy because he is still healing internally. We have been so blessed through this entire process. Life is soo crazy. 

Justin the morning after surgery. He was still completely shaken up, confused and scared. The nurse in the ICU asked if he wanted me to hold him and he did. He looks like he isn't a happy camper but he was just smiling before the picture was taken. I think me being able to hold him was really good for both of us. The blood you can see on the bandage is from the 'halo' used to hold Justin's head in place during the surgery. He also had a soar under his chin from the halo. His lip developed a huge blister from the breathing tub rubbing against it.

I think this is Wednesday afternoon. Justin took a shower shortly after this and took off the white bandage by himself. He was crying this is gonna hurt and then he just tore it off really fast. This kid is crazy. We were moved out of ICU Thursday evening.

I think this was Friday. Justin swelling went down a lot faster then we had imagined. He started getting up and going pee on his own the morning after surgery. I'm sure this helped the swelling as he was on his feet, not just laying in bed.

We are headed to Logan's soccer game. Justin has been getting pulled around in the wagon. Logan has stepped up and taken upon himself to pull his big brother around. It is the sweetest thing. We have been getting out of the house in the evenings to take walks and Logan will ride his bike or scooter for a bit then he drops whatever he is doing and takes over pulling the wagon. He is a tough kid. We have been attending Justin's soccer team's games as well. Justin has been a good sport and wants to be there to cheer on his team even though he can't play.

 Justin dozed off to sleep when I started this post so I woke him up to take a picture...that's why he looks half asleep. He has recovered so well. We went to the park today and he was playing like he usually does....which he isn't supposed to. We see Dr. Lemole next week at which time he will probably let Justin do more active things but still no swimming for 4-6 weeks. Justin's head is glued together so he can take showers but he can't have his head completely submerged in water. The glue will eventually wash away and his hair will grow back and cover the scar completely. They don't use staples or stitches, just glue. The holes in Justin skull are covered with a material that dissolves...no metal plates or screws. Pretty interesting stuff. Justin discovered two bumps above his left eye and we think those are from the stitches from his jaw muscles that had to be cut. 

What's next? We have a follow-up appointment with Dr. Lemole in a week and a half and then we are just waiting for a call that a tissue sample was sent to the genetics lab at which time we will go get Justin's blood drawn and sent for testing as well. Testing is most accurate if done with tissue and blood. It takes about a month for the testing.

Justin will have an MRI in 2-3 months to see if the matter in his skull base is hyperostosis (thickening of bone) or more tumor and evaluate the tumor in the sinus. We could possibly do radiation at that time. Then we will focus on the tiny acoustic vestibular schwannomas by making decisions to do surgery on the left nerve where hearing is already lost or do nothing, get a hearing aid and wait 'til a medication is available and risk Justin losing his hearing in the left ear completely by waiting. Hearing loss is a possibility if we proceed with surgery and he will surely lose all hearing eventually if we do nothing...just not sure the time frame. We will do a lot of praying and fasting, that I'm sure.

Justin knows this wasn't the only river he had to cross. He obviously doesn't completely understand NF2 but he does know we have more rivers to cross. I just hope there is a medication available soon instead of surgery being the only option.

I was listening to some of the I'm a Mormon clips and there was a clip of a mother who lost a 4-year old son in a snow sledding accident. She 'matter of factly' said "Life isn't fair. We knew that when we made the choice to come to earth." (That is the message I heard...she could have said something completely different though.) I hear her saying life isn't fair in that 'matter of fact' voice often and I agree with her it's not fair that my sweet, innocent little boy has this burden to carry and I also firmly believe that we knowingly accepted the unfairness before we came to earth because we knew that life after this mortal probation would more then make up for the unfairness...a billion times over.

I'm so grateful for all our tender mercies. We were so blessed to have both grandma's on hand to assist with Logan...he was quite the handful to say the least. We are amazed at the out pouring of love from so many people.

Recovery

Justin was moved out of ICU today. He had a fever so they took some blood but the preliminary results came back looking good so we aren't too worried at this point. Justin had a blood transfusion so u was worried when he got the fever. His fever is under control and he hasn't taken IV pain meds for 6-7 hours. He is amazing. He has been up a lot today. He was just setting next to the window looking outside at the view. He took a shower today and took off his own bandage while he was crying. He is so brave. 

Dr Lemole showed us the scan results and there is a lesion of the tumor is Justin's sinus and possibly more tumor in skull base bone. Dr Lemole said is wasn't positive if there was tumor in the skull base and he had discussed the images with the tumor board and no one knew what it was so it could be tumor and it could be a side effect of the tumor he took out so we will have some scans in a few months to see if there is a change with the skull base. Dr Lemole says the tumors are treatable with radiation. I worry about radiation because NF tumors have a different genetic make-up and are precursors for cancer. So if they use radiation the tumors could come back malignant. A few doctors say we have spoken with say it's okay to use radiation on meningiomas but not on a schwannomas and other doctors have said dont do radiation on either. Schwannomas are the tumors on Justin's accoustic nerves and the meningioma is the tumor dr Lemole removed most of Tuesday. Just another battle we will face down the road. 

Justin is doing very well and we are hoping to be headed home this weekend. I can't get my phone to upload photos so hopefully I will have a pic tomorrow. Thanks for all the support. We feel very blessed to have such a great support system. 

Post-Op Relief

Today seriously flew by for me. I know it was a tender mercy that hours seemed like minutes for me. The surgery went accordingly and Dr. Lemole said he thought he got everything out and if he didn't get out everything it was dead because he "burned the hell out of it". Dr. Lemole worked on him for 6 hours but Justin was in surgery for close to 9 hours. 

We received phone calls almost hourly with updates on Justin's status and Ryan Workman who is a member of our Ward who is also an anesthesiologist here was giving us updates (and food) throughout the day. 

Justin lost a smelling nerve. We have two smelling nerves so he still has one left so we can work with just one. Justin's blood pressure dropped a little during surgery and he had an infusion but his body didn't react negatively in any way to the transfusion. 

Ryan was able to get us into recovery with Justin where he was coming out of the anesthesia and feeling pain. This was very hard for me and I was surprised that I had to sit down and almost passed out. Seeing Justin go through pain crushed me. He had to feel some pain in order to come out of the anesthesia and then they started monitoring his pain medication slowly. They don't want him to overdose, but it was very hard to watch. I wanted to be there with him to comfort him so I wouldn't of had it any other way. Jason would sooth him by putting a hand on his shoulder and running his hand along his neck. This comforted Justin and he was able to relax and fall asleep. 

Once Justin's pain was under control we headed to get a CT scan and then to Pediatric ICU. He started crying when we got to PICU but the nurses asked if anything hurt and he said no. He was crying because he was still coming out of anesthesia. I was relieved he wasn't in pain and I have made sure to know the protocol for getting a nurse in here to give him pain meds when they are needed. 

I am very proud of Justin. He is a strong boy. Even in recovery he was watching every move the doctors were making and monitoring everything they were doing to him and even asking them questions about what they were doing. I was very impressed he was so conscious of those things while he was in so much pain.

A dear friend reminded me that because of Justin's age he probably wont remember today or tomorrow and all this pain. This is comforting. Dr. Lemole saved Justin's life today and we are greatly appreciative of everything he did for Justin.

This is Justin about an hour and a half ago. The swelling has started and will get worse tomorrow and Thursday with bruising but as he is able to get up walk around the swelling and bruising will go away. These next 24 hours will be tough but every minute that goes by is a minute closer to complete recovery. 

A Pre-Visit to Children's Diamond Center

Today we had the opportunity to meet with the Child Life Specialist (Lauren) that will be with us for Justin's surgery. She took us on a tour of the Children's Diamond Center and while we were in the Pediatric Intensive Care Unit (PICU) a small horse walked in.

Justin was a little apprehensive at first (as was everyone else...a horse in ICU?!?!?!) but he warmed up and was able to pet the horse and walk it up and down the hall. They call this pet therapy. They also bring in small dogs.

Justin asked the head nurse in the PICU how long he would be in the hospital and she wasn't sure. He wasn't too excited about having to sleep there but I reassured him Jason or I would be there with him the entire time he was in the hospital. He said he was scared and Lauren said it's okay to be scared, but remember your mom, dad, grandmas and all the nurses and doctors are here to help you get well. He kind-of took in her response with a deep breathe and smiled (I think he got embarrassed).

Justin had to have another CT and MRI about a week ago at the hospital where they are performing the surgery. We got the results Saturday and it listed an additional tumor on his right temporal lobe. It is a small tumor which is probably why it wasn't caught by the previous scans. As frightening as this is I am beginning to understand that this is what life will be like, each time Justin has a scan there may be new tumor growth. We will just deal with it when it becomes an issue. As much as it makes my hurt ache for Justin, these are facts we have to live with.

Our Home Teacher came by tonight and assisted Jason in giving Justin a beautiful blessing. He shared a scripture, 2 Nephi 2:24 which reads: "But behold, all things have been done in the wisdom of him who knowest all things."

So although we don't understand the entire plan the Lord has planned out for Justin and our family we do have faith that there is a reason. We have many choices everyday. It's my choice how I will deal with this and I am determined to choose joy.

We need to be at the hospital tomorrow morning at 6 a.m. Surgery is at 7:30 and is scheduled for 8 hours. We should receive progress updates throughout the day. I felt the easiest way to relay the updates besides this blog was via a Facebook page, so I will be setting that up later tonight and I'll send out invites to everyone. If you don't receive a facebook friend request to join the "Get Well Justin" page, please message the page or my facebook page (Emily Tressler Anderson) and I will get an invite sent to you.

Thank you to everyone for everything from the meals to the stuffed animals, cards, emails and prayers. There have been so many people that have touched our lives these last fews months, we are so grateful to all of you. We are mindful of you and your concern for Justin and we are grateful we have such a strong support system.

Surgery Date Changed

Justin's surgery has been pushed back to May 21. When Dr. Lemole found out Justin's surgery was scheduled a day before he went out of town he had his scheduled change it so he could do the follow-up. I will admit I was alittle apprehensive when the scheduler told me Dr. Lemole wouldn't be doing the follow-up, so I am relieved he will be doing the follow-up but annoyed the surgery is pushed back giving me more time to agonize over the situation. I guess there is a reason for everything.

Logan learned how to ride a bike without training wheels in about 2 seconds. He had been riding a balance bike for the last year and when Justin got his new bike Logan took over his and was a pro within moments.

The boys just want to ride bikes all day long which is a nice change from them wanting to play video games and play with electronic devices.

Justin had a soccer game tonight. He was goalie the first quarter. As the team started warming up Justin started to get scared. He calmed down and played a really good game. He is very fast.

Justin kept dancing around so it was hard to get a good pic.

This week was full of excitement starting with Logan throwing up all Sunday night, Monday and again Tuesday. Our washer finally broke on Tuesday making it impossible to clean any towels or bedding which was just a little bit of an issue since all our towels were drentched in throw-up. Wednesday I had an unexpected root canal which had me in a fowl mood most of the week then Thursday Justin's surgery was pushed back. By the end of the day Thursday I was DONE...to say the least. I felt like I have been handling things pretty well, trying to stay busy and upbeat and I felt like if anything else were to go south I may not be able to keep my game face on...if ya know what I mean. I've heard that we choose our trials...if that's true I need to be slapped...a lot. I prayed Thursday night that we would have a calm day today...that nothing major would happen or at least no damage that would result in costs over $400. Today was a good day and not that it was the perfect day but it was calm comparitively speaking.

Although we have had a bit of a stormy week I am very aware of the spirit that has engulfed our home and our lives. We have had countless blessings that have been keeping our spirits up. We greatly appreciate the packages from family that can't be here with us, the dinners from dear sweet friends, the visits from nearby family, Justin's wonderful teacher and classmates, understanding employers, dedicated running buddies, friends that allow me to unwind/vent, prayers, phone calls, cards, emails, thoughts, texts, etc. We are so very blessed.

This afternoon Jason, Justin, Logan and I all snuggled up on Jason & I's bed and took a nap together. It was a sweet tender mercy to have such a peaceful moment with them. When we awoke we were able to take part in hearing Ali announce her mission call to Reno, NV. How awesome is that? She will be the best missionary. What a perfect ending to a great day.