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! 

 

Here We Go

Let’s get er done…

Her blood work, EKG and ECHO looked great!  The meds arrived on Friday morning and she started her first dose at 3:30pm. She will take two pills every day for the next two years. Next MRI is in 3 months and I’m praying for a miracle…and asking God to remove the tumor already.

We know He has big plans for our girl and all our trust is in Him. 

 

Update from Coach

Four weeks ago today I wasn’t sure if my baby girl was going to wake up here or in heaven. Forever grateful that we serve a mighty God.

Update sent out by her Coach…

As you all know, Hope made it out of the ICU and straight home on New Years Eve. She finally had her first full night of sleep in weeks. This can only help her to recover. From everyone who has been able to see her…the consensus has been,  " She is herself, funny, smart, tough, the only difference is she gets tired quickly". THIS IS HUGE! After an invasive brain manipulation some changes are to be expected but to have no visible change in heart, attitude and personality is amazing. The tiredness is to be expected. 

Doctors are still in disbelief that she was doing well in soccer and school with no signs (aside from headaches) of what was to come this past holiday. However, this team knows first hand Hope doesn't complain. By the way, the headaches have disappeared!!!

In the past 2 weeks she has had some visitors…including her entire 6th grade from school. I can only imagine she would be overwhelmed by the attention since she is not the kid who tends to ask for attention. She is good for about 30 mins at a time and working her way back. The strength will come with time. 

Yesterday was a big day. HOPE MADE IT TO SCHOOL FOR A HALF DAY!!! Ummm this was not supposed to happen for a month or more (but did we expect any less?) She received an award at school for straight A's, came home and ate then managed a 30 minute walk. As if that is not enough she then ran up and down the hallway trying to build up her strength. I mean seriously…strong mind and body!

While the surgery is over for now there is still a bit of recovery and follow up. Which means prayers are still needed. 

This is what the next few years will entail: From Jill…

Insurance approved the medicine she'll be on for the next two years. They denied it at first but our oncologist appealed it🙌🏼🙌🏼🙌🏼. She'll go in for lab work, an EKG, an ECHO and an eye exam in a couple weeks before starting it. Then we have to go every three months for those same tests. 

It's a lot, but way better than chemo. Dr. Shafron said she could be back to playing on the soccer field in 3 months but when she starts feeling better she can get out there at practice and at least kick the ball around.....just have to be careful with her head. Let’s not forget, she's still out right now for her nose surgery a few weeks ago too. 

For now we are all missing Hope and the Birtch Family. However, this team continues to be a huge source of support for the family as well as each other. 

Look forward to getting the girls back on Saturday. Thank you all for everything you have done this season. We still have a lot more soccer and team time to go!

WE HAVE HOPE

-Coach Watson 

Hope went to her game today to cheer her team on. 

Reunited and it feels so good!

Love these girls. 

Teammate and Bestie!

So thankful for this team and our amazing Coach. 

 

All is Well

They say…no news is good news, right?

My girl has been feeling great. Her energy is coming back!  She’s been taking two long walks around the neighborhood every single day, doing her daily stretching routine for soccer (this girl is dedicated), lots of golf cart rides up to school to see her friends on their lunch break and the two of us have been watching numerous hours a day of, Heartland (and now we want a ranch and horses.) Ohhh and Jamie has been spoiling us with a fire every morning and night. We’ve declared this time our winter break do over!

Today is our first of many appointments at PCH. She’ll have blood work, an ECHO, an EKG, eye exam and then a meeting with the oncologist. We will do this every 3 months.

We are continuing to remain positive and praising God again and again.  

 

Walk for Hope

There are truly no words to express how grateful we are for all the love and prayers. There is still so much goodness in this world and this is just one example. Hope’s teacher planned and organized a surprise, Walk for Hope!  She gathered all her current teachers, former teachers, her principal, parents and the entire 6th grade class and they walked over to our house after school to show their support and wish our girl well. My heart was so full and the smile it put on Hope’s face meant the world to us. We will never be able to thank everyone for everything they’ve done for us.  

New Med

We’ve been doing a lot of napping….and sitting by the fire❤️  Healing and recovery at home is soooooo much better than at the hospital. 

Last week we met with our neuro oncologist (who is an absolute angel on earth) to discuss our plans moving forward. We were given two options….chemotherapy for a year….which would wreck havoc on her immune system and she’d lose her hair or a trial that we could enroll in. Two kids get the new oral medicine which is taken twice a day for two years (side effects are a severe rash/acne) and the other one gets the placebo (which in this case is chemo.) I asked Dr. Hoffman, if this was your daughter what route would you choose?  Hands down she’d go the oral medicine route. That’s the route we choose however we were not comfortable with the trial….we did not want to be the 1 in 3 that got chemo. With that being said, she did all the work and got the medicine approved by our insurance (since we won’t be doing it as part of the trail.)

We got word last night that our insurance approved the medicine she'll be on for the next two years. They denied it at first but our oncologist appealed it🙌🏼🙌🏼🙌🏼. She'll go in for lab work, an EKG, an ECHO and an eye exam in a couple weeks before starting it. Then we have to go every three months for those same tests for at the least the next two years. 

While we don’t know God’s plans, we continue to trust them. 

My Girl

She’s beauty and grace….and all the good things in the world wrapped into one. Not once has she questioned, “Why me” or “This isn’t fair.”  Not one single time has she complained. She’s stronger and tougher than anyone I know and I thank God every day she’s mine. 

Continuing to take things slow and let her body heal. She’s really tired and naps frequently but each day she feels a little better. 

Christmas Round 2

Yesterday we celebrated Christmas as a family. All four of us together at home….just as it should be. I loved seeing the smiles on their faces but it wiped Hope out. She took a good two hour nap afterwards. Praying her strength and energy return soon…..and her poor tailbone is killing her from laying in a hospital bed for almost two weeks.