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.

We Have a Date!

Last Thursday and Friday we were boiling over with anticipation of the phone call telling us when Justin's surgery would be and when Friday came and went we were just a little anxious (to put it nicely...if you say your gonna call by a certain time, then CALL...for the love!!!). We knew it would be a long weekend but luckily Jared and Melanie came and saved us. (We love them so much.) 

So the surgery is set for May 13th...the countdown has begun. Best case scenario would be to remove both tumors without any side effects/nerve damage and the biopsies come back benign. We are 90% sure the tumors are benign...we just don't know whether the surgeons can get everything out.

We had another doctor appointment today with a neuro-opthalmologist...we discovered some very interesting things about Justin's right eye (the lazy eye, not the eye the tumor is pushing on). I won't go into detail because I really don't understand most of it anyways. So more patching, patching, patching. Dr. Bixenman...Justin's favorite doctor thus far. 

We stopped at the gas station on the way home to get Logan some 7-Up because he had been throwing up all night and I realized Justin didn't know what a slurpee was. (Forgive me Father for I have sinned.) He loved it! Can't believe he's never had a slurpee before.

Logan is feeling a lot better and I am looking forward to a long restful night of ZZZzzzZZZZzzzzZZzzz!

Escaping to the Fair!

We decided to head to the fair yesterday. After meeting with 5 different dr. in 3 days we decided to escape for a bit and forget about life. We didn't tell the kids where we would be going...we pulled up to the fair and Justin was soooo excited. They had such a blast.

Just an update on what's going on around here. We met with a neurologist that specializes in NF2 yesterday, Dr. Narayahan. He is the dr. I found on the NF website. He ordered some genetic testing for Justin via blood samples. Dr. Narayahan said genetic testing only has a 95% or lower accuracy rate. We know Justin has NF2 because of the bilateral vestibular schwannoma's but taking blood from Jason and I wouldn't accurately test us for NF2 so we each have to have an MRI. Good Times!

We met with an ENT Dr. Chiu, who specializes in sinus surgery. We wanted to talk to him because the MRI showed enlarged sinuses which we thought were due to sinusitis but Justin doesn't have sinusitis. We were educated today about the frontal sinus...it usually isn't developed until later in life but Justin has both frontal sinuses and the left sinus is twice the size of the right. It's ballooned up and Dr. Chiu thinks the enlarged sinus is what appears to be causing the proptosis, not the tumor...very interesting. Dr. Chiu wasn't sure what would cause the enlarged sinus and there could be an underlying issue. He recommended seeing us after the tumor is removed and healing has taken place to see if that causes any changes to the enlarged sinus. Dr. Chiu recommended seeing a neuro-opthalmologist who could evaluate the amblyopia and whether he thinks there is something else going on besides amblyopia. Dr. Chiu thought that even if he drained the sinus it wouldn't change the position of the eye?!?!?! Not sure why not if that is what is causing it...perhaps since it's been growing that way it is a permanent thing?!?!?!

While visiting with Dr. Chiu, we were able to meet Dr. Jacobs who specializes in NF2 and who just received a large grant for NF research. Dr. Jacobs will be assisting us with treating the bilateral vestibular schwannomas. Dr. Jacobs said there are some treatments available and he will explain the options and we would need to make a decision on which treatment option we wanted. Geesse...Louise...wishing they would make those choices based on best possible outcome but I that would just be toooo easy.

Yesterday we met with Dr. Lemole to schedule Justin's surgery. It was a very hard visit. Dr. Lemole explained the surgery would be scheduled for 8 hours and Justin would be in ICU for 3-4 days and then in the hospital for another 2-3 days. We love Justin so much...we are so sad that he has to go through this. He is still such a happy little guy. He is enjoying the attention he is receiving from all the doctors...thank goodness. We have a busy week to get him ready for surgery. Surgery will be May 6 or May 13.

Thank you again for all the prayers and concern. We love you all.

Marshmallows....Yumm-0!

Just roastin' marshmallows in our back yard. Good Times!

Today we met with Dr. Lemole a neurosurgeon at University Medicare Center here in Tucson. Dr. Lemole has the reputation of being the best skull base neurosurgeon in Arizona. I was grateful he was willing to meet with us on such short notice not only because he is so good at what he does but also because he doesn't specialize in pediatrics...he assured us he could do the surgery without a question. Dr. Lemole saw 3 tumors, one large meningioma which is on top of the left optic nerve and two small Schwannoma's (acoustic neuromas). If we wait too long for the surgery Justin could go blind so if we decide to have Dr. Lemole treat Justin we could do the surgery in May.

We have an appt in a week with a Neurologist (Dr. Narayahan) and a Neurosurgeon @ Phoenix Children's Hospital. Once we meet with them we will decide which route we are going to take. Dr. Narayahan specializes in Pediatric Neurofibromatosis and I found his name on the NF website so I am anxious to see how we feel after meeting with him.

Dr. Lemole explained his treatment plan for Justin would be to get a biopsy then remove as much of the tumor as possible and then if there was anything he couldn't remove we could do radiation or take a wait & watch approach. Not sure how to determine whether to do radiation or leave the tumor and hope it doesn't cause difficulties down the road which could possibly lead to more surgery and radiation anyways?!?!? I'm hoping there will be a pyschic on staff that will inform us which option has the best outcome for Justin's future?!?!?!?

After Justin has recovered from the removal of the large tumor we will have to face the other issues of the two schwannoma's and his hearing loss. Dr. Lemole said we could  do radiosurgery which would stop the growth of the tumors and prevent any more hearing loss. Then there is the issue of the Sinus Disease...we have Justin on an antibiotic but he may need surgery if there is damage to his sinus's. Then we wait and watch.

Determining if you have Neurofibromatosis Type 2 can be done with genetic testing but in Justin's case it is almost a given that he has NF2 because he has bilateral Schwannomas. Dr. Lemole explained that the probability of having one Schwannoma is very rare so having  bilateral Schwannomas you almost positively have an underlying gene disorder...NF2. We plan on getting genetic testing for Justin, Logan, myself and Jason.

Thank you all for your prayers...we couldn't do without.