Wednesday, June 29, 2011

Random thoughts

Here I sit in the hospital. I have to wake Jackson up every two hours to go pee. It sounds simpler than it is- he is a very deep sleeper.

As I lay awake I have lots if random thoughts going through my head. I think about cancer, and our family, and our amazing support system. But I also think about silly things like punctuation and how I don't even know the definition of a verb.

I think about laundry and dishes. I think about Relief Society and my sister. I think about my fears and my hopes and plans for the future; not just the distant future but also the future that will happen on a few hours, days, and weeks. I think about how we used to take our good health for granted; we used to take so much for granted.

I have so many random thoughts going through my mind. If only I could sleep- but what's the point, the nurse is coming back in our room in 16 minutes for more meds and to make Jack pee again.

Last night was easy compared to the first night. Brian was here for the first night, and it sounds like it was complete torture for both Brian and Jackson.

Cancer sucks. Chemotherapy sucks. Bio Hazard urine and vomit definitely suck.

Monday, June 27, 2011


Leaving for the hospital this morning was difficult. We know we are making the right choice to fight this cancer- but even knowing that it's the right thing, we still question our decision. Today we admitted our 5 year old to the hospital for chemotherapy. Today we took a visibly healthy child to the hospital so that the doctors can pump his little body full of poison. Poison that we are hoping will kill the cancer that is growing inside of his little body.

Cancer. Every time I hear that word it is like a slap in the face. A slap in the face that takes my breath away every time. I am learning how to cope. Perhaps being slapped so many times helps you get used to it, yet again, maybe I'll never get used to it.

Today was technically day 0 of chemotherapy. We had no idea what to expect- we still don't know what to expect. We sat in the hospital room for 8 hours today while Jackson was given IV fluids. His urine has to have a certain pH balance before they can start the chemo drugs. Eight hours of waiting to get started.

We spent some time together at the hospital as a family- thanks to my mom for bringing little sis up. It is surreal to think that hospital visits will become our new normal.

Jackson is starting chemo with two different drugs today. One is yellow- called methotrexate- it's side effects are so many I can't remember them, but Kidney damage, hair loss, nausea, mouth sores and dizziness are all some of them. Because of the possibility of kidney damage Jackson will have to go to the bathroom to pee every two hours so that the drug doesn't sit in his bladder or kidneys too long. Being on this drug makes Jackson "bio hazardous".

Driving home tonight I kept wondering if this could somehow be a horrible dream that I will wake up from. I keep wondering if this is real, but I know that it absolutely is real. This pain and heartache is real. The effect it is already having on our family is real, and the impact is devastating at times.

Tomorrow is officially day 1 of chemotherapy.

Wednesday, June 22, 2011

Moving Forward

Most of you who know us have probably already heard Jackson's diagnosis. But for those of you who don't know, Jackson has cancer. It's a very rare form of cancer found mainly in infants and toddlers. The fact that Jackson is 5 and has this cancer is pretty uncommon.

I could go on and on about the things we have learned about his specific type of tumor/cancer, but instead, I'm going to move forward- just like the title of this blog.

It's insane the speed at which things are moving. It hasn't even been a week since his diagnosis, and we've already been on a roller coaster of sorts.

Monday he had an echo cardiogram to check to make sure his heart is strong. Tuesday was a blessedly normal day. Today he had an ultrasound on his kidneys to see if the cancer has spread there (this type of cancer usually attacks the brain and the kidneys first). Today he also went in for surgery to place his double lumen broviac line or a Central Line that will be used to administer his Chemotherapy drugs.

Tomorrow we'll be at the hospital again for a hearing test, and a GFR test to check the function of his kidneys. 6 doctor appointments and 1 surgery in three days.

It has been a lot, and we've only just begun. The wonderful news is that Jackson is surprisingly doing great. I am genuinely amazed at his positive attitude, and his sassy attitude. I had to ask myself tonight if he really had surgery again today because he was sassing me. He seems to understand more than any 5 year old should. He listens and absorbs information. He asks intelligent questions, and has valid concerns. He is resilient and seems to be taking all of this into his stride. I hope to be as courageous as he has been.

More good news is that there are no visible signs of tumors on his kidneys! We have been so lucky that we caught this cancer so early. What started as an "eye issue" in January- double vision, and his eye starting to turn in- was actually a blessing. Without his eye turning in, we still wouldn't know that he had a tumor. He is so incredibly healthy, and you'd never know that he is walking around with cancer.

From here on out it's going to be busy busy busy. Lots of doctors visits. Lots of long hospital stays during the Chemotherapy. Lots of sleepless nights.

He should start Chemotherapy sometime next week. He will be in the hospital for about 3 weeks while he goes through each round of Chemotherapy. The plan is 5 rounds of Chemo, and 2 rounds of Radiation Therapy. The next 6-9 months of our lives are already planned out for us.

Our lives have been drastically changed in the last 6 days. It almost feels like our world stopped turning when the doctor said the words "Malignant Tumor". But I am still surprised that things are moving forward- moving forward at lightning speed.

So, like I said in our family blog. We don't feel strong, we don't know why this is happening to our sweet boy. We just know that we are here for him no matter what. We will help him through every step of this process, no matter how difficult. We will fight this fight, and God willing, we will win.

Tuesday, June 14, 2011

Going Dim

The surgery for Jackson was a success. They got what they needed for the Pathology Report and Jackson is recovering better than any of us- or the doctors expected.

I don't plan on updating this blog for a while, but I'm not sure how long.

We are still not sure where this road is going to take us, we are waiting for results and to hear the doctors treatment plan. Somethings I am not ready and not willing to share, and when we do get results I am not sure I am ready to put them out here for the world to read.

We cannot tell you all how much your support means to us. Jackson is so lucky to have so many on his team, cheering for him. Thank you.

Monday, June 13, 2011

Mean Mom

Jackson has been pouting most of the morning. He keeps jumping on the bed and running head first into a pile of blankets and pillows. I keep telling him to stop and to calm down, but then he pouts and tells me I am a mean mom.

He told me "Running is fun. Walking is boring." I have also heard him say "I am a little boy, and boys need to be crazy." I agree, he is a boy, and boys should be crazy- just not days after brain surgery.

Leaving the hospital we were given some restrictions and guidelines. No straws, no swimming, no diving (sky diving or pool diving), no sneezing and no picking his nose. All of these restrictions are in place for a month. Jackson has been great, and so far the hardest restriction to follow is the "no straws" one. Luckily he's not a nose picker.

It's a Monday. We're back at home and pretty much everything feels like normal. Changing sheets, making beds, eating breakfast, watching cartoons. How is it that everything can feel so normal already?

Saturday, June 11, 2011


We are home now. I can't get This kid to sit down for more than two seconds. You would never know that only 2 days ago he had brain surgery.

He can't wait to ride bikes again. But we are going to make him wait until Monday or Tuesday.

He has so much energy. I just hope he is not over doing it.

Out for a walk

This little guy is out for a walk.

He should be home today sometime after lunch.

Hooray Hooray Hooray

He gets to come home anytime today!!! I just talked to Brian on the phone, and the doctor signed discharge papers so he gets to come home whenever he is ready!!

Jackson is more than welcome to hang out as long as he wants, but as soon as he is ready he can leave the hospital.

That being said, if you want to visit, please wait until tonight, because Jackson will be HOME!!

Brian said they took out the rhino rockets and it was not a pleasant experience. He said that Jackson is pretty upset. Jackson wouldn't even talk to me on the phone- which I totally understand.

I am so anxious to get back up to the hospital. I can't wait for Hailey to wake up so that we can go.


Jackson would love to have visitors tomorrow, but we want to make sure he is able to rest lots. We don't get ANY cell phone reception in the hospital. ZERO. ZILCH. NADA. However, the hospital does have WiFi, so feel free to comment here or email me or Facebook me and we can figure out a time for a good visit. It is a long drive, and I'd hate for Jack to be feeling to bad to have visitors come.

Also, like I said in the last post, There is a small possibility that Jackson may be coming home tomorrow so visitors may need to wait until we get home.

We are requesting that visits are short (10 minutes max), and have a limited number of guests.

I will blog tomorrow on times we feel like we can have visitors.

Thanks for your understanding and your support.

Friday, June 10, 2011

NTU Update

So much has happened over the last 7 hours since I posted last. I didn't realize that so much time has gone by. Time in the hospital seems to go so slowly, then something happens and time flies so fast.

As I pushed "publish post" on the last post we were talking to our new nurse in the NTU (Neuro Trauma Unit). She required our attention, so I published and things got pretty busy from there. We got him all signed in and got more pain meds in him. He took a little nap and Brian and I got the tour of the NTU so that we know where things are like the the parent showers, bathrooms, ice and water machines, toys, books, movies and video games.

He was pretty groggy all day falling in and out of sleep. When he wasn't sleeping, he was in a zombie like state staring at the TV or just staring out into space. He would cry out in pain about every 2 hours when the morphine would wear off, and his biggest complaint was the sites of his IV's. We tried to get him to eat, but he didn't have any sort of an appetite. It was a struggle to even get him to have a drink of water at some points.

We finally talked him into ordering some chicken noodle soup and a strawberry smoothie. We really wanted him to eat solid foods so that he could get some Loritab which would last longer and help manage his pain better. We got the food and he ate 3 bites of chicken broth then refused to eat any more.

At about 4:15 I remember him asking me when Grandma and Grandpa were coming and bringing Hailey. He missed his little sister and was looking forward to her visit. My parents brought Hailey and showed up around 5:00. Hailey was so happy to see all of us. She was especially excited to see Jackson, but she had to wait patiently for him to wake up from a nap. When he woke up he was happy to see people visiting but was still pretty lethargic.

We were going to keep the visit short, but anytime we would say that they were leaving he would say "no, stay." Aunt Becky came to visit too and she and I took Hailey on a walk to explore a bit. We went to the 3rd floor where they have a kids zone or play room. Hailey colored Jackson a picture then we went back to the room to give it to Jackson.

Jackson laid in bed pretty much all day except when he had to go to the bathroom. Brian would help him walk, or he would carry Jack to the bathroom and Jackson would whimper on the way there and on the way back. Jackson also started having a fever of around 101 degrees which made him clammy and even more groggy.

Jill, Tayler and Ashton came to visit Jackson too. I honestly have no idea what time they came. Like I said time in hospitals goes either really fast, or really slow. They brought with them lots of treasures for Jackson. My Activity Day Girls did a service project for Jackson today at their activity (a complete surprise to me). They made him a card a blanket and a coloring book. They also made Hailey a blanket and a coloring book and made Brian and I some great Thank You notes. Jill also brought Jackson a super cute gift pack from Fire Station 107. I am constantly amazed at the thoughtfulness of people.

I think Tayler was kind of freaked out to see Jackson in the state he was in. Honestly he was doing better at that point than he had all day, but he was still mostly a zombie. He did get excited to show Tayler the button he gets to push to call the nurse. But just in case some of you come see Jackson in the next little while, be prepared because it may not be a pretty sight.

I walked our visitors out to their cars, and had to get Hailey's car seat from my mom's car. When I came back I was shocked at what I heard.

We had been begging Jackson all day to eat something, and all day he refused. When I got back from the car, I found a more alert Jackson. It sounds like as soon as I left Jackson told Brian that he was hungry and wanted some food. Brian tried to call for room service, but missed the window by 15 minutes. Jackson had eaten a cracker and half a pudding cup by the time I had gotten back from the car.

I am not sure what did the trick but somehow he turned a corner while I was outside at the car. He was more alert and his speech wasn't as slurred. He was watching America's Funniest Videos when I got back and was even laughing a little here and there. I don't know where this boy came from, but I sure am glad he's here. It is such a relief to know that he is doing better, and finally starting to feel like himself.

He ended up eating half a grilled ham and cheese sandwich and some honeydew melon. He drank some apple juice and tapped his little bandaged hand a bit with the music on the television. I am so glad he was able to turn this corner. I literally can breathe a little easier tonight.

I am home tonight with Hailey. We are trying to get some sleep, but plan on heading to the hospital tomorrow morning. Just as I got settled in here at home a bit, I got a phone call from my little Jackson. He sounded like he has a severe cold (due to the nasal packing) but he also sounded triumphant. He told me that he walked down the hall all the way to the movie room and back with out holding Daddy's hand. Hearing about his accomplishment brought me tears of joy.

The doctor and the nurses say that if Jackson can continue healing so well, he may be able to come home as soon as tomorrow. Brain surgery yesterday, Intensive Care Unit today and the possibility that he may be coming home tomorrow.

Tomorrow the plan will be to have his "rhino rockets" removed by the Neurosurgeon. Dr. Riva-Cambrin said that it can be pretty traumatic and that he has the parents step out of the room because it is so messy and nasty. I think I don't want to be there for that part. I think it will cause lots of hysterical crying. We will be there for Jackson though, we want to do anything and everything for him.

I am amazed at the love, support, and prayers that are being sent our way. Thank you all for being here for our family.

Today had a very happy ending to a rough rough beginning. We are praying for more happy endings.

Out of the PICU

Hooray!! We are out of the PICU and into a room in the NTU or Neuroscience Trauma Unit. We are so happy that he is doing well enough now to leave the PICU. We are also excited that Jackson is in his own room.

Things are much quieter here and although it isn't the ICU we still feel very well watched out for. In fact I feel a little more watched out for here.

A little walk

This morning the surgeon said he wants to have Jackson up and walking a bit more today. Jackson seemed like he wanted to get up and go on a walk. In fact at one point he asked if he could "get some fresh air". We got him out of bed and he walked to the nurses desk which is maybe 20 feet but then he was done. When he got back into bed he was exhausted.

Since then he has been sleeping off and on here and there.

We have also made a couple of trips to the bathroom.

He is still in a lot of pain but not as bad when he gets the morphine. The morphine makes him very sleepy. He is starting to fall asleep now and I think Brian and I are going to try to sneak downstairs for some lunch.

Mustache Bandage

Jackson has what they call "rhino rockets" up his nose to help with the clotting and drainage. On top of the rhino rockets he has a gauze mustache which catches the excess blood and drainage from his nose.

We just got back from his CT scan and had to Change his mustache bandage again. This is his third Mustache bandage.

Before he went down for his CT scan he was in an incredible amount of pain after a trip to the bathroom. His morphine ran out and the nurse didn't get him more soon enough. It was a very rough 45 minutes. I wish I could take away his pain. I wish I could be in his place.

He is finally relaxing enough that he is almost asleep again. The more he sleeps the faster he will heal and the sooner we can go home.

There is construction noise outside of our room. They are putting on baseboards in the hallway. The noise keeps Jackson awake. Anytime I talk to the nurse he tells us to be quiet. He is mellow but irritable because of the pain. Hopefully the drugs will kick in soon.

Grey's Anatomy

Have you ever watched Grey's Anatomy and the residents present the patient to the attending? Well that just happened. They let us listen in and I heard all sorts of numbers and statistics about sodium and other levels they tested in his labs this morning. I didn't understand most of it.

Sounds like he will get to move to the floor later today after another CT scan.

He is very sleepy still but the Neurologist wants him to get up and walk around later today. Hopefully that goes well.

Little Champ

What an ordeal this has been.

He peed this morning around 3- I think. And they took out his arterial line.

He is thirsty and his lips are dry.

We made it through Thursday. A day we dreaded is over. Now we have to make it down the rest of this road, I just wish we knew what direction this road is taking us.

One night

One night, that is all we have to spend here in the PICU. One night sounds short but it feels like an eternity for us.

We were lucky and were given a sleep room. We are taking turns sleeping. It was my turn first and I was away from Jackson from about 10 o'clock until almost 2 o'clock this morning. I tried to sleep but rest and sleep seem to be difficult.

Now I am back at Jacksons bedside listening to him snore. His little snores are music to my ears.

It sounds like while I was away things were a little crazy. Jackson's pain is pretty intense and he needs morphine every 2 hours on the dot. He was complaining of a stomach ache and then he threw up lots of blood. Now after he threw up he has been able to drink more water. Brian said he thinks the blood in his stomach was making him upset. After he threw up he had lots of bleeding from his right nostril but it seems to have slowed down now.

Brian is such a wonderful father and husband. I had to pretty much shove Brian out of the room and force him to go rest. He is so concerned about both of our kids He is such a strength to me and I feel so lucky to be able to rely on him for any and everything.

I feel so much guilt about not being here when my little guy was sick. I know it isn't possible to be with him all of the time, but I feel like I should have been here.

We are on our third nurse for tonight. And I just talked with her. She said right now our goal is for Jackson to pee. He hasn't peed since this afternoon and they want to make sure his kidneys are working.

One night is all we have to spend here, but it seems surreal to walk through the halls and see the many other children that will be here longer. This is a place I hope to never see or visit again.

Thursday, June 9, 2011

Slushies, sleeping, and CT scans

Becky here, blogging from Janet's account on behalf of Connie and Brian. We're all on Team Jack.

Jackson is recovering well in the PICU. His cute little nose is swollen and he's tired and groggy. He's already drinking a slushy, though, so things seem to be going well. The nursing staff is taking good care of him. They'll move him to another recovery area of the hospital tomorrow.

The surgeons are pleased with how the surgery went and they're sure they got enough for clear biopsy results (which we expect to get in a week or less). Jack will have another CT scan in the morning to check everything out. They said there will already be a visible difference in the tumor because of what they took for the biopsy.

Connie and Brian will be staying at the hospital tonight, trading off in a hospital provided sleeper-room. Hailey misses her family but is happy to spend the night with Grandma, Grandpa, and Aunt Becky. She's cheering on the team; this message is typed by Hailey with love:
263Klgf./ ddvf 01110211002003ya vd

Translated that means GO TEAM JACK! We love you buddy!

He is good!!!

We still can't see him for another 20 minutes or so. But we talked to the doctor and everything went great!!

They were able to go through his sinus via his nostrils. The biopsy came out in tiny little pieces but they got enough for the pathology report.

Now we help our boy heal and we wait for the results.

One more hour

One more hour down and another one to go. Just got another update from the nurse.

Three hours under sedation. Two hours of active surgery already done and another hour until we can see our baby again.

Blood Pressure is good. Heart beat is strong. Temperature is normal.

They have a small piece for biopsy but are going to get some more. Then they will close up.

One more hour and we get to see our boy


Got a call from Des the nurse. They got started about an hour ago. Jack has another IV in his foot and an arterial line in his right hand.

He cried at first when they took him but it sounded like he calmed down a bit when they played with the toys.

We met Dr. Cauldwell. He said he will take care of Jackson like he was a member of his own family. He promised to take good care of our boy.

Still waiting patiently for any more information.

CT Scan and Surgery

After the MRI we were surprised that Jackson had a CT scan. Because the tumor is in the bone the surgeon wanted to be able to see more so he ordered the CT scan. We could do CT scans every day. A CT scan is easy peasy compared to an MRI.

Jackson did great in the MRI. He watched Charlie Brown. The technician had to stop his movie to do a few extra scans and while he was waiting for the scans he fell asleep in the MRI machine.

After we were done with the scans we were surprised to meet up with Brian's dad in the hallway if the hospital. Jackson seemed excited to see him.

They just took Jackson back into surgery. That sentence makes me hyperventilate a bit. He was afraid. He cried. We cried. They gave him versed to help him calm down but even with that he freaked out.

Dr. Cauldwell was running late so even though Jack is back in surgery they won't start until Dr. Cauldwell gets here.

Our first update will probably he in an hour and a half. At that point they will just be getting started.

This is going to be the longest hour and a half.

IV Troubles

Jackson is in the MRI machine right now. Brian and I cannot go in with him this time because the magnet is stronger than at the Riverton Hospital. Before he was able to go into the MRI he had to get his IV.

The IV was a horrible experience for Jackson. He hates blood work and needles, they cause him a great deal of anxiety.

He was crying hysterically. He kept screaming things like "I want to be done" and "this is the worst day of my life".

They had to poke him twice. By the time the IV was in the three of us were all in tears.

This road is a difficult one.

Surgery is scheduled to start around 2:00 today.

Here we go

On our way to the hospital. Figured out how to blog from my phone.

MRI first then surgery after.

Lots of tears shed already today by our whole family.

Wednesday, June 8, 2011

Class, Blood Work and Plans

Today was a busy day. We spent the day at the Zoo with our cousins, then followed the visit to the Zoo with some blood work at the hospital and then a Pre-Surgery class. We had so many other things that we could have done- laundry, dishes, cleaning- but we decided that for today playing was more important.

The pre-surgery class was amazing. We were the only ones in the class so Jackson go a whole bunch of individualized attention and we got a great tour of the areas we will be spending lots of time in the next few days.

We got to see an operating room, then tour the ICU and the Neuro Trauma Center (NTU) where Jackson will be staying. I think the tour was good for Jackson, but also it was good for me. I learned a little bit more of what to expect. How is it that I am hysterical, but that my little guy is so composed?

I went to Relief Society tonight. I wanted to be normal. I don't think normal exists for me anymore. No matter the outcome of this situation, I am forever changed.

Tomorrow is a big day. We are headed to the hospital for another MRI and then Jackson will be going in for his biopsy- brain surgery. The surgery should last anywhere from 45 minutes to 3 hours. I will keep this as up to date as possible. Hopefully the next post will be a happy one.

If you are the type that prays, we would appreciate it if you would add our family to your prayers.

Jackson's Story

On the day after Christmas we were helping Jackson's cousin move, and he was accidentally bonked in the eye with a 2x4. Jackson only cried for about 20 seconds, then rubbed his eye and was off playing again. Later that day Jackson started complaining about seeing double. I wasn't too concerned at first, but as the week went on he still complained about seeing double so I called the eye doctor and made an appointment for Jackson to be seen.

January 3, 2011 was the first time Jackson was seen by a doctor for his double vision. The doctor did a complete eye exam, but saw nothing wrong with Jackson's eyes, and told me that ifs it didn't get better by Valentines Day that I should come back into the office for another visit. Within 2 weeks Jackson's double vision got worse, and his eye started to move in towards his nose so we went back to the doctor. One doctor referred us to another doctor and that doctor sent us in for Jackson's first MRI.

January 28th Jackson's first MRI scan showed nothing significant to worry about, so we did what the doctor recommended and took the "wait and see" approach to treating Jackson's sixth nerve palsy. We waited for 5 months. We patched Jackson's good eye to help with his vision. We got him glasses, and we got a prism to help even more with his vision. Still, nothing seemed to help his sixth nerve palsy, and instead of staying the same, it got worse. It was finally in May that the doctor recommended we get a 2nd MRI for Jackson.

The 2nd MRI showed that Jackson had a tumor on his clivus bone which is right at his brain stem. The tumor was pushing on his sixth optic nerve causing the palsy. At the word "tumor" our world stopped turning.

Jackson went in for a Transphenoidal Biopsy (brain surgery through his nose) and they took a biopsy sample of Jackson's tumor. Eight long days later we heard the pathology report of Jackson's tumor. He had cancer.

June 17, 2011 we found out that Jackson has an extremely aggressive form of cancer called AT/RT or Atypical Teratoid Rhabdoid Tumor. This tumor is found mostly in infants and children, and the fact that Jackson has it at the age of 5 is extremely rare. Also, the location that Jackson's tumor is in, is also extremely rare and a very difficult spot to treat.

Jackson just finished his 2nd round of chemo in the "Butt Kicker Protocol" as his Oncologist calls it. He is currently going through radiation treatments, and after he finishes 30 treatments he will endure 3 rounds of Bone Marrow Transplant- where he will receive his own bone marrow back. This road has been far more difficult than any of us could have ever imagined, but along the road we have been able to find beauty in simple things.

We now know that getting hit in the eye with a 2x4 had absolutely nothing to do with having a tumor, but because of that event, we were able to see Jackson's symptoms much earlier than we would have otherwise.

We hope and pray for the best. We are doing everything we can possibly do to help Jackson beat this cancer, and now we have to leave the rest up to a higher power. We have great faith the our prayers have already been answered, and that the Lord is helping us through this trial.

Thank you for your love and support, and for reading all about Jackson's journey.

Monday, June 6, 2011

In the beginning...

I am starting this blog as a secondary blog to our family blog. This blog will be public, and because of that I am hesitant to share too many details. Knowing that I am going to hold back lots of private information, I still want to share updates on Jackson. I want to be able to have a place to update our family and friends on Jackson's progress over the next few days/weeks/and months.

Jackson is an incredibly bright, happy, energetic boy who has a magnetic personality. Jackson has many family and friends who love and look up to him. Jackson also has a brain tumor.

We have been on this treatment road for about 6 months. Originally we started seeing they eye doctor because Jackson was seeing double after getting hit in the eye with a 2x4. His eye started to slowly turn in towards his nose and the eye doctors diagnosed him with Sixth Nerve Palsy.

After the first MRI, we waited to see if the Sixth Nerve Palsy would heal on it's own, and the nerve would repair itself. The time frame when you are waiting for a Sixth Nerve Palsy to heal itself is 6 months. So we waited, and we would go back to the Pediatric Ophthalmologist every 4 to 6 weeks to track Jackson's progress. Through tracking Jackson's progress, we found that his palsy was getting worse, which is not common for a Sixth Nerve Palsy. So, we got a second MRI.

After the second MRI, and a second opinion we got two devastating phone calls from two different eye doctors that there was a growth in Jackson's brain.

From that point it has been a whirl wind of action. We have met with an Oncologist, and a Neurosurgeon. They stopped calling the growth a growth, and started calling it a tumor. We have had blood work done, a third MRI, more blood work and now we are scheduled for a biopsy on Thursday.

Our son has a brain tumor. No matter how many times I say it, it still takes my breath away.

The biopsy is more than just a normal biopsy. Because of the location of the tumor, the biopsy is major brain surgery.

We have been blessed with such a great support system of family and friends around us. We are amazed at the love we have felt.

This is an incredible trial that we are going through as a little family. And it is far from over. After the biopsy/ brain surgery we will wait patiently for 7 days for the pathology report. From there we will work with the doctors to find out the best possible treatment plan for Jackson. This is a long road that we are on, but we find comfort knowing that we are not on the road alone. We are so grateful that there are so many out there that are on Team Jackson.