As I write this, we are flying home from New York. The past few days have been a whirlwind. We arrived Monday at 3:00 and rushed to a 4:15 appointment. Within 15 minutes of sitting down and talking to the doctor, we were informed that coverage for surgery and treatment was DENIED!! My heart sank, my face got hot, and I was sweating. How was this possible?? I followed what they asked and had MULTIPLE referrals from doctors and our oncologist. We explained to many people in insurance and finance that Oregon could no longer offer us treatment and our daughters case was time sensitive. We were still told it didn’t matter and that we were still denied. Then we were told we were needed to be seen at St Charles in Redmond!! Redmond doesn’t have an oncology department and definitely doesn’t have a peds oncology. This response seemed so absurd to me!!! So many thoughts and feelings ran through me, then out of nowhere, “God is faithful” popped into my head. After that, I was okay. We asked to pay cash for
Charlotte’s scan and blood draw so we could see the cancer activity.
The rest of the day Monday and all day Tuesday, Tyler was on the phone. We have involved the government, since federal government is the cause of this dilemma. From congressmen in multiple states, to Oregon Senate and governor.
Charlotte had her PET scan Tuesday afternoon. Wednesday we went in to meet with the doctor and discuss the plan. The results of the scan were as we had feared. She has too much active cancer in her little body for surgery. Through all of this, was a hidden blessing. If they would’ve operated without a scan, they would’ve discovered the activity and it could’ve put Charlotte at more risk.
We now have a new plan. We are headed home and will start a low dose chemo on Monday in Portland. This will be for 5 days. Once her counts come back up, we will do another stem cell harvest, and then move on to MIBG therapy. Our NY doctor will be working with the doctor in Portland and we are hoping and praying insurance will be straightened out or we will figure out an alternative.
This was the first time we have ever been shown Charlotte’s scans and it was heartbreaking to see how much cancer is in her sweet body.
Your continued prayers are needed and greatly appreciated. We will have a couple of days at home before we head to Portland.
-Approval through the insurance or another door to be opened
-Strength for our family
-For this new plan to make some head way on her cancer
-A clear view for all of those following Charlotte, to know that ultimately God is in control and he won’t fail us
Regardless of the disappointment on our trip, there was joy too. We were able to have a tea party at The Plaza and Experience the crazy busy city as a family. We were able to spend time together and enjoy our children.
“The Lord is my rock, and my fortress, and my deliverer; my God, my strength, in whom I will trust; my buckler, and the horn of my salvation, and my high tower.
In my distress I called upon the Lord, and cried unto my God: he heard my voice out of his temple, and my cry came before him, even into his ears.”
Psalms 18:2, 6 KJV
Angie Jeppsen says
Our prayers are still flooding for your sweet family. I can feel my blood rising as I read this post as I know the helpless feeling. I can’t believe they told you to be seen at St. Charles!!! That literally stopped me in my tracks for a moment.
I remember the feeling of, “Okay, enough talking, let’s just save her.” I am praying for helplessness to subside and for you to feel God’s strength and divinity.
We are so touched through your posts and the constant reminder that God is in control, gives everything a new light.
Your sweet children are so blessed to have you as parents. My prayers will not cease.
God be with you in every thought and location.
Brenda Straley says
When you are fighting for your child you work so hard at just keeping your thoughts calm. I am amazed by the grace in your writing. When my daughter relapsed in 1999 ~ it was the same week when they came out with the news that they cloned a sheep, Dolly. My question to our pediatric oncologist was “if they can clone a sheep, why can’t they clone my childs good cells to fight her bad cells.” I pray for you all to keep your peace in your heart, your faith, to find strength & to strongly rely on Jesus. I pray this issue with insurance is resolved. May God hold you all in His loving arms.
Mary Finkbeiner says
Your family is in my prayers daily. Your expressions of pain, hope and frustration are felt but your relying on God shows through so vividly.
Teri Stamos says
As if it isn’t enough to deal with your Charlotte, you have to confront obstacles that make no sense. I am sorry for all you are going through. Your faith and love for your children will continue to give you strength. We will pray for Charlotte’s recovery.
Teri and Blake Stamos (The Bend Trolley)
Joseph peake says
I pray for victory over Charlottes cancer And your family. I pray for the Doctors and nurses that treat her. I know death and illness is an enemy of God. One day these horrible things will come to pass. Praying for comfort and rest in our Savior Jesus Christ.🙏🏻🙏🏿🙏✝
Blessings to you all. Prayers for healing and wisdom over you! I’ve been watching The Truth About Cancer, so fascinating, I would contact Ty Bollinger, he might have some great advice for you.
Julie Hodges says
Love and Big Hugs to you all! Always remember… HOPE shines brightest in the darkest moments! Your Strength and Hope shines through this baby girl… You Two are Amazing Parents! Prayers are and will be heard…For He is listening! Peace and Blessings
Wendi Blake says
Prayers for your family for peace and understanding and guidance approval from the insurance The Lord will open the doors and protect your sweet baby and provide for your family and lead the drs in the directions that you would have them go. I pray that others see the Lords works through your family and that they will cling to you with their own struggles and choices and that others will come to know you LORD. I feel The Lord leading me to offer you my services I am a direct sales representative and I don’t have much money I don’t even own a car I can drive but I am a consultant and would love to do a fundraiser for your daughter and your family. I can’t imagine the strain that all this has had on your family financially I don’t know your finances or your employment or anything other than what your story states in this post but it touched my heart and I want to offer what I have to give. Please contact me if you see fit. Have a blessed day and will keep these things in prayer.
My email address is email@example.com
My website if you would like to see what we offer
Please please make a donation at any Wells fargo branch to the graced by Charlotte fund. Now more than ever we need the support of everyone to insure that the best possible treatment is available regardless of cost. Insurance companies should not have the power to dictate who gets treatment and who doesn’t, but they do. We all have the choice to help. Together we can share this with everyone we know to get Charlotte well.
Aunt Mona says
Dear Children , how disheartening this must be! But how great God is! Words cannot describe! I can’t say that I understand all you are experiencing because only God and others that have walked the same path can say that. I have not. But I do know that GOD is love. That He is good. That He is true. And He is faithful! And it’s His love that causes you to go to the limit to save your darling little Charlotte. How great is your love for her! To go to the limit! To reach for the impossible and then be willing to surrender all into the hands of the Almighty God!
You are doing that for her and HE did that for the world! What Love! What Grace! What Surrender!
As you hold His hand and let His strength supply your weakness may He give you peace. Continued love and prayers for all of you.
I am so very sorry to hear about this!! Praying. PLEASE LOOK UP DR LORRAINE DAY AND HALLELUJAH ACRES!!! She can be healed through diet and its no joke. People on their death bed have been healed. Chemo will ruin her immune system which is what she needs to get well. Im not being rude but truly care for what your going through
Lena Norton says
Oh my, this will be one of those things I will want to talk to Jesus about when I get to heaven and ask why, why, why???? I know that doesn’t help, I just want you to know I am weeping with you and continuing to beg and plead with our Heavenly Father to miraculously heal this baby girl. Please Jesus, hear our prayers and give us the desire of our hearts. “For where two or three (in this case, two or three hundred) have gathered in my name, there I am in their midst!” I’m claiming this Father!!!
Jenni Van Winkle says
I am so angry at this situation as I am sure you are as well. I just want to encourage you to not give up…dig down deep and keep fighting. Use that righteous anger and flip over the tables in the temple, make your voice HEARD, call them on this absurdity, and stay after them. It breaks my heart that you have to deal with this nonsense on top of fighting for your precious girl. We are praying for angels with BIG swords go before you and clear a path for little Charlotte. Lots of love, and fists and sticks!!!
In 2007 my son was diagnosed with Hodgkins Lymphoma. Went through 6 chemo and getting ready to do stem cell transplant and things became worse. His oncologist told us nothing else could be done. We contacted Mayo clinic in Arizona and within a day we had an appt for him in 2 weeks. We had no problems at that time with our insurance which was Blue Cross of Texas..I was amazed. I am so sorry you are having to go through this experience and for her especially. Breaks my heart when another child is have to go through this.
Prayers and thoughts to you all!!
Dee Mason says
Prayers for you all.
Beth Skaug says
We will continue to pray for a miracle in Charlotte’s little body and a hedge of protection around your family. God will provide exactly what you need when you need it and will continue to guide you through this. We love you guys!
Lily Rico says
No words to describe the non sense of the insurance. Only admiration for the dignified way of your words. God is with all of you. I’ll keep praying for your miracle. Keep the faith and keep fighting! Much love…
Denise graves says
Our continued prayers are with you all and your sweet little Charlotte .
Shirley Kitchell says
God, we pray for Your healing and glory to be revealed. We are filled with hope that Your Spirit intercedes for Charlotte and will prevail. Please strengthen her body for surgery and to fight the physical battle against the cancer cells and the mental battle against hope.
Lacie Loy says
Charlotte and all of you have been on my heart and in my prayers. God is the great physician and is a loving God. Her beauty and smile are a true inspiration when you realize the hand she has been dealt right now, fight little Charlotte and all of us prayer warriors will be by your side!
Sharon Nicholson says
I have been following little Charlotte’s reports which brings much sadness; however, at the same time I am encouraged in the Lord to believe for a miracle. There isn’t much hope in what man or medical science can do, but with God nothing is impossible!! I am praying for that miracle and strength and peace for the family. God bless all of you! Sharon Nicholson
Kirby Vanderyt says
May the strength of love and family surround, and sustain you all.
Continued best wishes and blessings.
Danielle Chilcote says
My heart goes out to you and your family!
I can’t imagine the pain you must be feeling daily…