Monday, April 29, 2013

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!

Thursday, April 25, 2013

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 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.

Friday, April 12, 2013


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.

Wednesday, April 10, 2013

We're Afraid to Blink

It seems every time we blink lately our world is taking a 180 degree turn. We received the results from Justin's MRI and the findings are consistent with Neurofibromatosis Type 2.

Neurofibromatosis Type 2 (NF2) is a rare genetic disorder that is primarily characterized by benign tumors of the nerves in the ears and spine. Basically if you have NF2 your body doesn't produce Merlin (a protein that functions as a tumor suppressor). In some individuals NF2 is caused by new mutations of the gene that occur for unknown reasons and in others NF2 is inherited as an autosomal dominant trait. We think Justin has a new mutation as Jason and I don't have NF2...or at least we don't think we do. I'm sure we will be doing some genetic testing in the coming months that will help answer some of the questions regarding how Justin acquired NF2.

The MRI report shows a large multilobulated meningioma growing in many areas. The report also lists some other schwannomas/meningiomas and some tiny vestibular Schwannomas. We aren't sure about the number of tumors at this point.

Good News: The MRI of the spine was clear. Dr. Sifontes seems optimistic as far as treatment goes and has referred us to a Neurosurgeon (Dr. Lemole) at UMC whom we are seeing Friday. I was reading on the NF website and they recommended an NF Specialist/Clinic in Phoenix which I am working on getting an appt with as well. We will meet with both and decide from there whom we want to treat Justin.

The report also showed Justin has sinus disease. The CT Scan report stated Justin's left frontal sinus and his ethmoid sinus were enlarged...I wonder if this is the cause/effect of the sinus disease or something caused by NF2?!?!?!?!

We still have a lot of questions/concerns. We know Heavenly Father has a plan for Justin and this is part of it. I know Justin is capable of dealing with this while keeping his happy go lucky personality in tact. When Justin was 3 years old Jason and I visited the Temple with hopes of gaining knowledge and insight on how to raise him...he was a typical 3 year old...throwing tantrums, wanting his independance. Jason and I both felt impressed that all we needed to do was Love him and everything would work out...and so we have been doing just that and have faith things will work out.

Tuesday, April 9, 2013

MRI Complete

Justin had his MRI today. I told him right before they took him back for the procedure that he would have to have a shot for the anesthesia...he started crying. I felt bad when the nurse announced he wasn't getting a shot (at least he wouldn't be awake when they gave it to him...oopsie). So he stopped crying and was relaxed...scowling at me.

Tucson Medical Center has someone come and talk to Justin on his level about what is going to happen. The two times we have been at the hospital it has been a girls in her 20's who is very nice and really great with kids. She helped Justin relax and laugh.

Justin was given laughing gas then when he fell asleep they put in the IV. The procedure only took two opposed to the three hours we thought it would take. We knew they were finished when we heard Justin screaming. (It was good we were in the waiting room.) We were told that he woke up too fast and all his brain hadn't woken up yet so he was really confused and scared. The dr. gave his some narcotics to knock him out again and then he woke up slowly. We were at his side the second time he woke up and it was much better. The narcotics effect everyone differently and they made Justin sad. He soon snapped out of his sadness when we got fluids in him and a Happy Meal.

He was back to his happy self by the time we got home;) Thank you to my friends Autumn and Sabrina for watching Logan and Kali for arranging everything and for bringing dinner. We are spoiled. Thank you for those who fasted and for those of you who have put Justin's name in the Temples and for all the means so much to us. We love you all.

We were told it would take 3-5 days to get the report and then our tech said it would be 2-3 days then the lady that gave me a CD of the images told me she would fax the report to me tomorrow. Since I do have the images on a CD I tried to view the images hard could it be!?!?!? I couldn't even figure out how to open the images, doh! It's probably for the best.

On another note...Logan started soccer today. He wouldn't listen to his coach, he just wanted to kick the ball around the entire time. He is a sporty little guy, very coordinated. We then went to my city league volleyball game where we were freezing and the sand on the court feels like sandpaper on your feet. I was miserable, but we won, YAY! I couldn't wait to get home and relax in a nice hot tub. I got the kids bathed and got Justin to bed and had run the water for my bath and was finishing up some stuff on the computer before jumping in when I hear Logan peeing. I run into the bathroom to see what is going on and he is standing in my tub of steaming hot, (relaxing and well deserved) water PEEING. Why is my life so awesome?!?!?!?! Let's just say Logan is completely done for the night...possibly longer! As mad as I was when it happened, I'm already starting to grin about it. That kid is a character. So lucky to have both Justin and Logan!

Saturday, April 6, 2013

The Humbling River

I was watching Justin play his Transformer game this morning and I had him pause the game so I could talk to him about what was going on with his eye and hearing. After the game had been paused for a few minutes it started playing 'The Humbling River' which is the theme song for Tranformers: Fall of Cybertron. Justin said 'I love this song! I heard it on Youtube' he had tried to sing it the other day but couldn't remember the words. Justin  and Logan started watching Youtube so we could get tips to get through the PSP games. Now it has become a form of entertainment...they will watch the Youtube tutorials non-stop and just keep clicking on the links which lead to more Transformer clips and more clips and more clips...on and on.

Anyways, I felt this song was very fitting for our blog.

The Humbling River by Puscifer
Nature nurture heaven and home
Sum of all and by them driven
To conquer every mountain shown
But I've never crossed the river

Brave the forest, brave the stone
Brave the icy winds and fire
Braved and beat them on my own
Yet I'm helpless by the river

Angel, angel what have I done
I face the quakes, the wind, the fire
I've conquered country,crown, and throne
Why can't I cross this river

Angel, angel what have I done
I face the quakes, the wind, the fire
I've conquered country,crown, and throne
Why can't I cross this river

Pay no mind to the battles you've won
It'll take a lot more than rage and muscle
Open your heart and hands my son
Or you'll never make it over the river

It'll take a lot more than words and guns
A whole lot more than riches and muscle
The hands of many must join as one
And together we'll cross the river

It'll take a lot more than words and guns
A whole lot more than riches and muscle
The hands of many must join as one
And together we'll cross the river

Wednesday, April 3, 2013

...and the Results are in!

Dr. Sifontes called to let us know Justin's blood tests came back beautiful (her words). This means that things are pointing even more toward a chronic bone disease and not a cancer/histio. Relief...

When you hear chronic this means slow growing, long lasting, persistent or recurring. Most chronic diseases can't be cured completely and mean a lifetime of medications, dr. visits, discomfort, medical tests, therapies and sometimes surgery.

I have been looking up chronic bone diseases online and haven't found any that we want Justin to have...doh! We are just happy the blood results are good and look forward to getting the MRIs out of the way.

Justin is unaffected by all of this. He is his happy go lucky self. Just imagine him skipping around with a transformer in his hand...constantly.

Tuesday, April 2, 2013

Abnormal Hearing Test...the Beginning

So...things never get dull around here. Believe dat! First of all...thank you everyone for the prayers, fasting, texts, kind words, phone calls, thoughts, hugs and emails. We have felt your prayers and love through the Spirit and know that Heavenly Father is mindful of what we are dealing with and that He loves Justin completely.

Justin had a hearing test at school that showed he had loss of hearing in his left ear. We were encouraged to see an Ear Nose and Throat (ENT) doctor ASAP. So, long story short the ENT ordered a CT scan due to hearing loss and the visible bulge of his left eye. Next business day after the CT scan we get a call that Justin has a mass growing that is causing his eye to bulge. The ENT can't say if the mass is affecting his hearing or not but he did say that he and the Radiologist agree that the growth looks benign. I really don't remember much about the conversation after he said benign.

Long story short...when Justin had his CT scan I asked that our Primary Care Physcian (Dr. Sifontes) receive a copy of the report. Dr. Sifontes called me last night and asked that we come in to her office today. She used to be an Oncologist and felt Justin had Histiocytosis which is a disease that eats away organs/bones. Let's just say we had a very emotional night last night.

This morning Dr. Sifontes calls after speaking with a pediatric oncologist (oncologist diagnose and treat cancer) and an orthopedic (bone) specialist. She now believes he doesn't have histiocytosis...but has a bone disease instead. The oncologist requested blood tests and the bone dr. wants an additional MRI ran of Justin's spine. What we know at this point is that Justin may have a chronic bone disease that causes his bones to calcify (harden) and thicken and has a side effect of growing lesions/tumors. The dr. checked Justin over to see if he had any other bone growths on his body and everything was fine except on the left side of Justin's back was shaped different then the it stuck out more on the left side?!!?!?!?hard to explain. So, still we don't know exactly what is going on but Dr. Sifontes feels optimistic that whatever Justin has is treatable and maintainable. 

Dr. Sifontes should be calling within 1-2 days with the blood results. We also have the 3 MRI's scheduled for Tuesday, April 9. The MRI will give the doctors more info about the growth and size of whatever is growing and where they are growing.

We are grateful to have dr. Sifontes working with us and spending so much of her time with Justin. She talked with us for an hour today with an office full of people waiting for her...she really cares about Justin and wants to assist in anyway she can.

We received some good news yesterday that Jason's pay won't be cut 42%. We appreciate all the prayers!

We will update the Blog as we get info. Thank you again for all the support. I appreciate all of you listening to me talk about this...I am usually not as open and have felt relieved in talking about what is happening. I think if I kept things inside I would have a massive explosion or meltdown. So thank you for being there for me and us.