All is Well

As they say, no news is good news!

Hope is doing great. Got straight A’s again this quarter (even with missing numerous weeks of school,) spent this past weekend with her bestie/cousin, Paige and is getting back in the swing of things with soccer practice every night. 

We’re excited and nervous (well, I’m the only one who’s nervous) for her first game back this Saturday. She hasn’t played in a game since the first week of December when she broke her nose. 

She is still taking a break from her medicine but we will discuss restarting it at her oncology appointment this Friday. It’s been nice giving her body a break this past week. Her poor skin is covered in rashes. 

As always, putting all our trust in the Lord. We are so so thankful for all the blessings He’s given us. 

 

MRI looks GREAT

This girl is nothing short of amazing. She had her first MRI (since starting her treatment) with and without contrast. She didn’t even flinch when they started her IV or while laying in the MRI for 45 minutes. While waiting to go back, she saw one of her teammates getting an MRI too.  What are the odds that both girls would be getting MRI's at PCH on the same day and in the same room (back to back.)  

We’ve been praying to see changes in the size and shape of her tumor. I told Hope that I was praying for a miracle and the tumor would be gone. She reminded me…"Mom, God’s already given us a miracle, I am alive."  She's the best and always reminds us of God's faithfulness.

Her oncologist emailed us late last night with the results…..and it looks GREAT!!!  The tumor is significantly smaller🙏🏼

We stopped the medicine again because the rash is pretty severe on her neck and back. Thankfully we can give her body a little break again and discuss dosage at her next appointment on April 1st.

We are praising Jesus over and over again!!!

 

Homecoming

I can’t let this day pass without giving a shout out to my favorite boy!!!  March 20th is one of my favorite days of the year.  On this day (16 years ago) we were finally able to bring our baby boy home from the hospital…110 days after his birth.  What a glorious day it was.

Three Months Today

Three months ago today I wasn’t sure if my baby girl was going to wake up here on earth or wake up in Heaven. I don’t know what it’s like to lose a child but I’ve come close (two times) and the pain is like nothing I have ever felt before. 

So so thankful for a loving God. No matter what we face He has never left our side.  

 

Weened!!!!

And this girl is officially weened off her seizure meds. No more Keppra!!!!!!

Enjoying some family time up north away from all the doctor appointments but getting anxious for her MRI on Monday. 

As always…we’ve got this!  We have HOPE!

 

12 Weeks

This girl amazes us daily.  I know I have said it before but she is seriously all the good things in this world wrapped up in one.  I wish more of us had an attitude like her....she's so positive.  Definitely takes after her Grams.

Let's see...

*She will be completely weened off her Keppra this Thursday!!!!  She's been on it due to the seizures she had in the emergency room and because of all the manipulation in her brain during both surgeries.

*She has now been on Trametinib (tumor shrinking med) for 26 consecutive days. While this medicine is no joke, she's trying her hardest to power through.  The rash is intense and quite painful but between the weekly red/blue light therapy and a topical steroid cream her oncologist just called in, we are hoping to get a little more relief.  These side-effects are tough for anyone but especially hard for a 12 year old girl.  We are 1/8 of our way through treatment.

*We are excited and anxious for her MRI next Monday.  Praying to see change in the tumor size but also being realistic as we know it takes 8 months for the medicine to start doing its job.

We are forever grateful for God's mercies and so blessed to have an army of prayer warriors lifting our girl up in prayer.  Always relying on God's strength (Isaiah 41:10)

We've got this.  We have HOPE!

 

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.