More Prayer, More Praise, and More Pineoblastoma

We talk about staying in today, but it only seems appropriate and necessary to take a look back at when this journey began. The following is our post shortly after we found out Ellie's diagnosis with Pineoblastoma.

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Jeremiah 29:11 "For I know the thoughts that I think toward you, say The Lord, thoughts of peace and not of evil, to give you a future and a hope

Matthew 6:34 "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own."

Philippians 4:11 "not that I speak in respect of want: for I have learned, in whatsoever state I am, therewith to be content."

1 Corinthians 10:31 "Whether therefore ye eat, or drink, or whatsoever ye do, do all to the glory of God."

We know that Ellie was chosen by God a long time ago to go through this.

As her parents we were also chosen, we have been given a privilege, and it is a true blessing. We want God to get everything he deserves out of this. While we would certainly love a miracle and for doctors to be baffled by a tumor that just disappeared, but if that's not God's will, if that not what is going to bring Him the most glory, we're o.k. with that. All we can do is focus on today, the blessings we have been given today, the smiles we have today.
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Back to the now...

When Ellie started acting funny last Friday I did start to panic. She had woken up in the middle of the night very shaky and unable to walk on her own.  I hadn't been warned of this side effect so the radiation docs took a look at her Friday. By then she was able to walk on her own again but not with the same confidence.  They weren't sure what was going on and no one seemed to think it was because of her cancer, but they ordered an MRI for Monday anyway. We went ahead with radiation Friday and by that evening her tremors were back. She just wanted to sleep on the couch. She improved over the weekend, I started to gain my confidence back that this was all just some crazy radiation reaction and she'd be okay. She started moving much better, still a little unsure and wobbly, but super happy.

We learned Monday, after her MRI, that in three short weeks Ellie's cancer has taken over her brain. Her spots have grown, her cancer had begun to spread, and new spots were showing...in 3 short weeks. For a minute I wanted to think, what if we had acted sooner...done chemo instead. But the what ifs get lost when you know you have done everything to follow God's path. I don't think we did anything wrong, this is just our journey. We were chosen for this. And I can't really say I don't know why anymore, I know why. God gave us this beautiful child to share his love with the world. He knew her sweet cheeks would draw people in, they would care about her, they would see how her parents love The Lord. They would see the ups and the downs and they would always see God's love.  I know why, but it doesn't make this hurt any less. My head has swirled with what we do now....I don't want to do this, I don't want to make these plans, I don't want to have these talks. I don't want to lose my daughter.  But I guess that part isn't really up to me. I know He's completely capable of healing her, I just don't know that's His will. It all still feels like a dream. She's been in such a good mood, smiling and laughing.

It was decided to discontinue radiation. Radiation causes the brain to swell and Ellie already has swelling and irritation from these new growths. Continuing radiation would cause more harm to her.  Because of how the tumor has spread surgery isn't an option and more high dose chemo involves hospitals, side effects, and in the end the same outlook. I held Ellie as I took all this info in, with Mom behind me. We always knew what the prognosis of this cancer could be, but never went there in our thinking, because it wasn't happening today...but today it's happening and we are now faced with the reality of this cancer.

She is now home on oral chemo and steroids to help with the swelling. We are home with a team that is being organized as we speak to help us. I am home with peace in my heart for today. The choice to go home was by far the easiest one we've made.  She is not mine.  She belongs to someone who loves her more than I do, even though I can't imagine how much that is. Trying to find other ways to heal her at this moment isn't going to happen....he told me "I will heal her" and he's right, only He has the healing power needed for this one. Trying new things and searching out other opinions is only going to take away the short time we have left. Some how I find comfort in knowing that if I won't be taking care of her that Jesus will be...doesn't make it hurt any less, just has a little extra comfort.

We now have to adjust to this new life, and maybe I'm clueless about what we are about to encounter, but it's not happening today. Today my girl is happy to be home...she couldn't wait to get there to see Noah, SG, Daddy...and Miss Kelly ( since Ellie thinks she lives there). She is in a great mood, has a good appetite and a bright smile. Saying goodbye to our friends at St. Jude wasn't easy, they were such a huge part of our lives and I hope to think we left an impact on them. I know we left a lot of glitter on them...Ellie wore her new sparkly jeans :).

 

Many are starting to ask what they can do to help or what we need or what our plans are...we don't know.  This is still all very new to us and we are trying to figure out what this new life looks like.  As many of you know I love a solid plan as much as the next girl, but our life is truly lived in the "now".  Richard and I are on leave from work and we are trying to enjoy the now as much as possible.  Noah knows what he needs to know for the now, and we just ask that if you are close with us that you speak carefully around him.  He's got a big heart, big ears, and a big brain. He can't possibly comprehend all of this is in our near future.

 

 

Prayers, Praise and Pink

Carly and Richard