Our week..

Oh Chunkers... We just love you.

I am having a hard time finding  a baby gate for our stairs. It has to be spindle to spindle. Isaac is obsessed with the stairs, I put two heavy bins in front of them hoping to keep him away. It worked for the first little bit, then he just figured out how to get around them...

Squeeze in on the side...

Climb on top...

 And tadaa!!! Mission accomplished.

It's hard to stay away when your best bud is headin' up!

"Reach Chunk! Reach!"

 Buddies

Isaac LOVES that bath and hauls booty when he hears the water turn on!

Seriously, this kids is out of control. Way to brave. And way to willing to sacrifice his body and well being to get where he wants!! HE cannot be left alone. 

Happy baby!

Cute little bum!

Isaac is such a good baby. We just love him. His teeth are starting to feel better so he is willing to eat big boy food again. He seriously ate nothing but squeezies and gogurts for almost a week. He is such a little flirt and no matter where we go he gives people his squishy nose smile and waves. He is my snuggle buddy and loooves to cuddle. He has learned "no" and says it with quite an attitude turning his head dramatically to the side when he says it-- little stink. He loves to dance and is very good at "raisin' the roof." Loves to sing. Loves wagon rides. Loves his mommy daddy and brother! He LOVE LOVE LOVES having shoes on and will bring them to me to put them on, and likes to have food in each hand. Not to eat but to hold until its totally disgusting!!

According to Atticus..

1. "Mom, if you want to waste food, we could throw it outside and let the bugs eat it!"

2. (it was super early, maybe 4 or 5 am) He turns to me out of the dead of sleep and says, "Mom! When I smelled my teachers sanitizer at church, I said, "Whoo! It burns my nose!'" Then he went right back to bed!

WEDNESDAY

My cute friend/ neighbor Chrissy works for and advertising company. They did some work for the Children's Cancer Fund and offered us tickets to go to the "Luncheon and Fashion show." It was a really cool experience. I have never been to anything like it before. It was as circus theme with clown, acrobats, and awesome table settings. It was so fun to meet her co-workers and to be an in uplifting environment raising fund for pediatric cancer research. Thanks Chrissy. Thanks Belmont!

 

Two of my handsome boys!

 

A mousse filled chocolate elephant.
 


Me and my fighter!

 

THURSDAY

Bahama Bucks! Our most favorite cold treat. The best flavors: Jamaican Punch and Blue Raspberry coconut. Atticus got too cold so we decided to eat the rest in the car while rocking out to his favorite itunes. He was so cute to watch him in shotgun, eating his bahama-rama-mama tapping his foot to Disney's! Isaac was cracking himself up by whacking himself in the head. He seriously was busting up.

 

Isn't funny how with the first child (or at least with my first child), your so careful to do everything the books say your supposed to. Only feed the child healthy food, never give them sweets, stick to a strict schedule... then baby #2 comes and you say, "Oh to heck with it! You want some icee buddy? Here ya go!" Life's too short. Pizza for breakfast? Yes please!!

 

FRIDAY

Atticus has been begging me and Eric to go to Chuck E Cheese. We told him that as soon as he started to feel better we would go. Well, Thursday was the day! We had a really fun time.



This cucumber on chunks finger kept him very entertained!!

Blasting the bad guys! Such a boy.

 

 

Doesn't he look so big! And skinny?! He is the same weight 26.5 lbs but has dropped to the 92%. He's going skinny on us :)  Traitor!! 

This was by far the boys favorite ride and both their cheeks jiggles when it moved!

 

FRIDAY MAY 4TH
..MRI..

Friday was a doozy of a day. We all woke up on edge with emotions close to the surface. Too close. I was an absolute anxious mess. Each day Atticus has woken up with a different symptom. Monday night, after the baseball game, it was his irregular breathing. Tuesday the left side of his mouth started to droop. Wednesday it got worse. Thursday, his right eye started blinking slower than his left eye and his right eye started looking "different." Friday he woke up with a slight slur in his speech and was walking very carefully, each step thought out. 

I dropped Isaac off to Jene at 11:30am. Atticus and I met daddy at the hospital at 12. We checked in, got him accessed and waited. And waited and waited. Two hours be be exact. Mama bear came out and I had to "gently" remind them that "He is FOUR" and "Has not eaten since 7pm YESTERDAY." Funny, they came and got him about 10 minutes later. 

While we were waiting for Atticus to go back I stepped out of the room and called Tiff. Tiff is an AMAZING woman whom I have never met, but hope to this summer. I know without a doubt in my mind that Heavenly Father put her in my life. I don't even remember how we came in to contact with one another. It must have been FB or something. Anyway, she is a DIPG mom whose sweet angel Sadie fought a very courageous battle and earned her wings about two years ago. The Huish family is a huge support to us. 

They did an experimental drug that Eric and I have been looking in to so I had a list of questions for her. Questions that of course bring tears. She is so good to lift me up and encourage me. It's refreshing in a way, to talk to another who truly knows the pains of never knowing, the frustration of being in the dark so much of the time. She said so many wonderful things but one thing in particular I am SO grateful for was, "Be prepared for the MRI to show no new growth. Now is when you will really become Atticus' advocate. Only YOU will know and recognize the subtle changes. The MRI may show that it's not growing, but you will know different." Dr. Lenarsky kind of prepared us for this too. Saying, "The MRI shows this much but the tumor and swelling may be effecting an area the MRI doesn't pick up."

Tiff is right. We know Atticus'. I know his breathing pattern, how he walks, eats, sleeps, how he likes is food cut up, they face he makes when he excited but too embarrassed to admit it. The face he makes when he's scared but to brave to say anything.  We know him and I think that's why Friday was so hard for us. Eric and I both felt that regardless of what the MRI says, we know that things are changing. Something is going on and whether the MRI picks it up or not doesn't matter. Atticus' symptoms are coming back. And it's breaking us. Eric and couldn't look to closely at each other for fear we would break down and start crying. So we resorted to texting. Asking each other how we were doing and what we were thinking, as to not let Atticus know we were scared. Really really scared. We thought we would have more "symptom free" time.

While Atticus was getting his MRI, Eric went upstairs to talk with the Doctors about Atticus symptoms getting worse and what our options might be. He spoke with Dr. Ghrisoli and what he said was that in the beginning (his vomiting and fatigue) they were hopeful it was Post Radiation Syndrome, but from what Eric described, it sounds like tumor growth. They talked about doing chemotherapy IV (which would mean going to the hospital for a few hours 5 days out of the month). The hope with IV chemo is that he won't have as hard a time tolerating it. They also talked about the experimental drug Avastin (sp?). Our Oncology office prefers Temodar because it is that typically tolerated better and has less intense side effects. Avastin can cause chronic diarrhea (which Atticus struggled with in the beginning... not good) and brain bleeds. But as with every medication, there are risks. The 4 Oncologists get together every Friday and talk about each patient and Dr. Ghrisoli said they would discuss these changes and hopefully will have MRI results to look at to help get an idea of whats going on. That if they did get the results, they would call us. 

Eric came back to the waiting room and we cried. I'm not going to sugar coat it. We are very concerned and are preparing ourselves for the worst. I remember crying to Eric saying, "I guess we're not going to meet the 2 yr mark then huh?" Obviously tumor growth or tumor changes don't mean its going to happen in 2 wks but it's not a good sign that things are changing already. BUT we don't have results yet. We are simply going off Atticus, how he's feeling and the symptoms he is showing. All symptoms he showed in the beginning. I know it sounds like we are being pessimistic but we just want to prepare ourselves. Obviously we want good news. 

Atticus woke up from sedation VERY upset. In fact the most upset he has ever woken up and was crying for a good twenty minutes before he finally relaxed and conked out. It's so hard to stay strong when all you really want to do is cry along with him. Heavenly Father is so good to give us strength when we feel we've just about run out. 

Eric stayed with Atticus while he woke up and I left to get Isaac. I bawled the entire way home. Jene was at the pool with a bunch of our friends and their kiddo's and I knew as soon as I got out of the car, and saw Jene and Tori walk towards me, it wasn't going to be pretty. My heart started racing and I got  really shaky. I lost it. I totally and completely lost it. Right there at the pool in front of everyone. I started hyperventilating and my body shook. I remember Tori holding me up with her knees, arms wrapped around me, Jene grabbing Isaac, then both of them helping me sit down. My hands locked up. Like I couldn't open them or move them. I couldn't stop crying. I couldn't breath. I have not flipped out this bad since we were given Atticus' diagnosis and life expectancy. I was really embarrassed. Not that it was happening, I'm fine with letting my emotions go from time to time, but embarrassed that it was happening in front of so many people. I'm sure it was quite a sight.

They helped my to my car, Jene drove, and Tori followed. They helped me and Isaac inside, got Chunk down for a nap, then sat next to me and we cried.

Eric and Atticus got home shortly after so it was game face time. Wipe your tears, say "Hey buddy!" and race some cars. So that's what we did. My sweet friend Kaity brought us dinner, again, then we all went to bed. Completely exhausted. Drained of everything. 

SATURDAY May 5th

Poor Eric. I woke up ornery. Big time. Ornery and depressed and emotional. Thankfully as they day went on I snapped out of it. Sorry boys! I love you all! 

It's baseball time! Atticus gets a sticker for each med he takes and when he uses all the stickers on the sheet he gets to pick out a special prize. His prize was a 'real' baseball bat!

chunk trying it out for him!

 

Batter up....


Swing...

 

I LOVE this picture

 

Dr. Lenarsky called Saturday afternoon (I told you he's an awesome Doctor, he said he didn't want us to be on nerves all weekend long). The MRI showed NO new tumor growth but DID show enhancements and swelling on the brainstem. That it would be easier to explain in person when we have the picture to look at. He is going to have Dr. Munoz read it and then we will discuss options on Monday.... Monday can't come soon enough.

SUNDAY May 6th

Isaac woke up with a 100.4 fever and Atticus wasn't feeling so hot either so I stayed home with the boys and Eric went to church. We played all day and loved it. Its really  nice having a day where you don't run errands, work on the to-do list, or do laundry. I really enjoyed the down time with my boys.

Atticus is on a Lego kick

Racing cars! I was the "sender" they were the "receivers."

Atticus: "Listen mom, I'm Darth Vader... Luke, I am your father!"
Isaac was very impressed with his impersonation!!

HE WALKS!!!! He walked about 8ft all on his on and has been testing it out all morning! We are so proud of our big boy! Go Isaac Go!! 

Seriously, how could you not be happy when you have this face comin' at ya!

Towers upon towers...

 

You can see the facial paralysis in the picture below. Today's new symptoms: he is having a hard time puckering his lips to drink from a straw, struggling with hand-mouth coordination- so eating takes more of an effort, and he talks like he has been at the dentist and has a numb mouth. This morning he told me, "Mom sometimes I see crazy, like circles."

Hang in there buddy, Daddy and I are going to figure this thing out and get you feeling better!

 

Our appointment is for tomorrow, Monday May 7th at 10am. We are both pretty anxious and have so many "possibilities" floating around in our heads. I don't think either of us will get much sleep tonight.
Thank you for those that participated in our family fast. It means a lot to us!
xoxoxo