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. 

HOME🙏🏼

Good Evening Team,

AMAZING NEWS... After a few rough nights. Hope was finally able to get her drains out. They were waiting for the doctors to move her to a "regular" room (because they cannot discharge from the pediatric ICU) but in true Hope fashion... she proved them wrong was released from the PICU and headed home finally at about 8PM last night!!!

As you can imagine this is a huge relief. No more being woken up EVERY hour. She was finally able to shower and I am sure her own bed is going to be a big comfort. 

She arrived home to a full walkway lined with handmade signs... and decorated for Christmas still. 

While she may have delayed Christmas a bit, what a great way to ring in the New Year. 

This year is going to be a lot of adapting but with this army around her I have no doubt she will succeed. 

Again, thank you all for the last 2 weeks of support and for the support to come through the rest of the season!

WE HAVE HOPE!

Thank you,

Coach 

Then Jesus said, "Did I not tell you that if you believe, you will see the glory of God?"

John 11:40

Drain Free

It’s been a rough few days but today was MUCH better. Hope finally got the last drain in her head removed so she’s able to sit up and move a little bit more. They also removed one IV and her central line🙏🏼

If we can keep her pain under control then we will be moved out of the PICU tomorrow and onto a regular floor.  One step closer to coming home. 

She wants to come home so badly and John has repeatedly said, “I miss my family.” 

I’ve been feeling defeated and helpless lately. I wish more than anything that I could take her place. We know that God will carry us through this storm and we will continue to put our trust in Him…..some days are just harder than others though.

 

Final Results

Today was a good day🙏🏼

We got the final pathology report back today and it verified the initial findings that the tumor is a pilocytic astrocytoma grade 1 (if you’re going to have a tumor this is the one you want). The plan remains the same to start an oral targeted therapy drug in January, which will last approximately 2 years.  The goal would be to reduce the size of the tumor over that period of time. Trusting Jesus and His plans. 

MRI is scheduled for 6am tomorrow morning. Pray that her ventricles have shrunk and her spinal fluid is being absorbed normally by her body. If all goes well the drain will be removed from her head and we’ll be able to move out of the PICU and onto a regular floor. One step closer to home. 

Christmas in the PICU

Christmas looked a little different this year but we made the best of it and made sure both kids enjoyed the day. Hope and I FaceTimed Jamie and John at home and opened up gifts together. Then Jamie and I switched so we could both spend time with each of them. The grandparents loaded us up with Christmas Eve and Christmas dinner and they made sure we didn’t miss out on any of the yummy holiday treats either. 

We are so thankful that Hope had a good day. She hasn’t needed much pain medicine and her beautiful smile is finally coming back. I think it helps that she just got her first phone for Christmas😉

My parents brought John and Macy up and we waved to them from her window. Hope misses them both so much. 

Our Neurosurgeon’s daughter baked her gluten free donuts and made her trail mix. He came in on Christmas…on his day off to check on her. Her bestie also delivered gluten free coffee cake and cinnamon rolls to the hospital and to our house so the four of us could enjoy the same Christmas morning breakfast. God has surrounded us with so much goodness. 

We love you all and are so grateful for Christ and His mercies.

WE HAVE HOPE🙏🏼

MRI

We took a few steps back and the MRI results were very disappointing.  We had hoped they would be able to remove all of the tumor, but it turns out there’s a large section of the tumor still in her brain. As long as the spinal fluid begins to drain and be absorbed by the body the way it’s supposed to, the plan is to start an oral drug in January that is similar to chemotherapy.  The drug’s purpose would be to shrink the tumor over time with the hope that she won’t have to have any additional surgeries.  The oncologist is still confident the pathology will likely come back as a pilocytic astrocytoma grade 1 (benign tumor). It was a tough day yesterday but today was much more encouraging. Praising Jesus in this storm.