More tests

Today we spent the morning at PCH getting her peripheral vision checked. The testing was a piece of cake. She passed with flying colors and we’re grateful to check this off  our list….for the next 6 months at least.  

Her vision is a concern because of the size and location of the tumor….but so far so good🙏🏼  Another answered prayer. 

On another note, today is day 13 of the restart of her medicine. Last time it was on day nine when the horrendous side effects started. We’re thankful for our dermatologist who prescribed oral and topical steroids and great neighbors/friends who own a medspa and have been doing facials and red/blue light therapy weekly. Praying we can keep the rash under control and the next two years will be smooth sailing. 

 

Two Months

Today is Tuesday, 2/22/22 and it’s Hope’s two month post op!  I love it. 

She restarted her medicine, Trametinib last Thursday. Praying we can manage the side effects and her body will adjust quickly…more importantly praying the drug does it’s job and shrinks the tumor🙏🏼

Our first MRI post PICU stay is March 21st at 1:00pm. While we know the medicine takes about 8 months to kick in, we also know we serve a God that makes the impossible, possible and we hope and pray to see some changes in the tumor.  

Best Friends

Find yourself some friends that will laugh with you, cry with you, pray for you and lift you up when you are down.  Beyond thankful that Hope has these girls as her best friends.  They are such a gift to each other and I am so grateful that she has them by her side during this journey.

As mentioned, Hope is in and out of school and every single school day she misses, she gets texts from these girls checking on her and letting her know they are praying for her.  They don't come any better than this.

And to top it off, they all waited to have their bestie Christmas exchange until Hope was home and well.

God is so good!

 

It’s Been Rough

I am not going to lie, this part of the journey is rough. The side effects from her medicine came on fast. Her poor little body is covered in sores/rashes/blisters/pimples…a mixture of all of those and they itch and are painful. 

Her oncologist had us stop her medicine (Trametinib) last Thursday the 3rd to give her body a break. She’s now on a strong antibiotic 2x per day, Keppra (for seizures) 2x per day and lots and lots of vitamins to keep her body healthy. 

She stayed home from school for a week, did her work online and took lots of naps. She’s also on Benadryl around the clock to help with the discomfort..but it makes her very sleepy. 

Thankfully she started feeling more like herself again yesterday so she went back to school and by this morning she was feeling great.

We will restart the medicine this Tuesday and pray that the antibiotics we now have on board will help with the side effects.  

Continuing to praise Jesus through this storm. We know He’s not done writing her story. We will get through this….just a bump in the road.  

 

6 Weeks Post-op

She’s come a long way in the past six weeks🙏🏼

She’s feeling well, back to school full time and doing pilates videos every night. Her determination is inspiring. 

However the side effects of her medicine came on quickly and they’re quit uncomfortable for her. She has a severe rash (acne) all over her face, neck, check and back. It’s painful and itchy. Thankfully our dermatologist squeezed us in this Friday. Praying he can bring her some relief. Our Oncologist said if we can’t get it under control we may have to half her dose or take a few days off of it and see if that helps. It’s going to be a long two years but we know the alternative it’s 100% worse.

The Birtch’s were made to do hard things. We’ve got this!

 

Day Full of Appointments

 Both kids happily played hooky from school today so we could go to a few doctor appointments.  

First up was Hope’s appointment with the ophthalmologist. With the size and location of her tumor we have to monitor her vision. I am happy to report she can see perfectly with 20/20 vision and there is no pressure behind her eyes. Next appointment is in four weeks and they will check her peripheral vision. 

She came home and napped while Johnboy went to his orthodontic appointment. 

Today was a good day!

Five Weeks

Today marks five weeks!

It seems like a lifetime ago yet I can remember every single detail of that day. I remember Jamie calling 911, the firemen in her bedroom, my parents rushing over to be with John and my mother-n-law rushing to the hospital to sit with Jamie in the parking lot (because only one parent was aloud in at this hospital.) I remember screaming at the top of my lungs for someone to help us because she started seizing. I remember the old lady in the next room yelling at me because I was crying too loud. I remember the tears in the social workers eyes and the sadness in the ER doctors voice when he read the CT scan and told us our daughter had a large mass in her brain.  I remember my nurse manager at work calling my chief neo (who called PCH and had everyone at Phoenix Children’s prepared for Hope’s arrival.) I remember the kindness of the airvac nurse and I remember him telling us he had a daughter the same age and he was going to treat Hope like his own (because I was not aloud to fly with her.) I remember hugging the pajamas she had been wearing because I wanted to be close to her. I remember watching her helicopter in the sky as we raced down the freeway to get to PCH. I remember crying so hard I couldn’t catch my breath. I remember begging everyone to get on their knees and pray. I remember her best friends sitting outside of the hospital on the bench for hours because they wanted to be close to her even though they weren’t aloud in. I remember my brother driving up from Tucson and sitting in the hospital parking garage all day long because he needed to be close to us and he didn’t know what else to do. I remember my best friends dropping stuff off at the hospital for us and bringing Christmas decorations for Hope’s room. I remember my mom being so strong and positive for us and I remember the tears in my dads eyes when I fell into his arms. I remember Jamie comforting me even though I know he was hurting just as much as I was. I remember everything and I’ll be forever grateful that Hope doesn’t remember one single thing about that day….except, 

“Who were those four Dudes in my bedroom?”🤣🤣🤣

With all that being said….five weeks later and by the grace of God, Hope competed in her school Greek Olympics and her team took home the gold. 

God is good all the time!