Well, it’s been two weeks since we arrived in New York. Charlotte was admitted to the hospital late Thursday, early Friday for a neutropenic fever. She had finished 2 days of chemo. Because her fever lingered, they postponed chemo for a day. Her fever has since gone away and her chemo is now finished. We are expecting her counts (which are already extremely low) to drop even more. She has already had multiple blood and platelet transfusions in just 5 days.
Today they did a stem cell rescue, the doctor informed us we will be in the hospital for 10 days after rescue!!! We definitely did NOT expect to be inpatient this long! If her ANC goes over 500 she will be released sooner but they believe it is highly unlikely.
Charlotte has been doing well. She has energy, jokes, and loves the mail she is receiving! Thank you all for the smiles you put on her face! Her newest thing is dancing and singing wherever she goes. She turns the lights off and says “light please” I turn on my flashlight and she dances away.
She has had minimal vomiting this round and so far has avoided mucositis. Days become longer when there isn’t very far to go. Tyler has taken the brunt of this stay as of now. Unfortunately, he had head home to get back to work today. We are looking forward to Charlotte’s aunt helping and shortly after her grandma! We are so grateful for the help and support we see daily.
The Ronald Mcdonald House has been nice with a few kinks, haha. Our first room was on a lower level, very busy with lots of checking in and checking out families. Unfortunately we discovered a leak after a ruined suitcase and a pile of soaked laundry and had to change rooms. We are on a higher, quieter, less busy floor now. We have met many families and Neuroblastoma kids, as well as children going through other cancers. People from all over the world! One family from India thought they would be here for a month or two, six months later and they won’t be able to go home for a year!! It’s heartbreaking to know what they are going through but at the same time I find it amazing that these precious children have so much life. They give us a reason to be thankful. I think of the many adults I have known that go through cancer and it’s obvious. You can only tell these children are sick from their sweet bald heads to the bandages on the chest or the tumors you can see. They are so resilient and show what it means to LIVE each day for what it’s worth. It’s another day!
Once Charlotte is able to rebound, they will scan the tumor near her spine again. We are hoping this chemo has done some damage to it. They will then decide if surgery is a possibility.(For those who don’t know, Charlotte has not been able to have any sort of resection surgery. Her cancer has been too active to safely operate.) If it is not, she will have a full work up of scans before starting the new NK Trial.
We have some new prayers and some old, but please continue. He hears us all!
- Her counts to shock everyone and shoot up
- This round of chemo, that one new medicine, to do some damage
- Minimal side effects
- A quick hospital stay
- Safe trips for those coming and going
- Peace for all of us
- Charlotte’s miracle
Praising God for:
- Minimal side effects
- Knowledgable doctors
- New friends
Something that weighs heavy on my heart is the lack of awareness:
In my life, I have seen a lot of cancer in friends and family some very close and some distant. It ALWAYS affects us. I have been around so many adults that suffer and yet it seems to be so much harder for me to see all the children. Their sweet bald heads, their ports or broviacs hanging from their chests, watching them learn how to ride bikes with their IV pole in tow. Their innocence completely ripped away by this awful disease, is truly heartbreaking. I LOVE that no matter what, all of the procedures, the needles, the miserable feelings, the foreign lifestyle, they find joy in small things. It rips my heart out EVERYTIME I hear a child screaming or vomiting, even when it’s not Charlotte, it hurts so bad and I wonder why them?!
We may be far from a cure, but it takes EACH one of us to stand up for these children. For their innocence. Our children deserve so more than 3.4% of federal funding for ALL of childhood cancers. Be a voice don’t let these kids fight alone!
“The Spirit himself bears witness with our spirit that we are children of God, and if children, then heirs—heirs of God and fellow heirs with Christ, provided we suffer with him in order that we may also be glorified with him.” Romans 8:16-17
Sara Johnson says
Can you email me the address where Charlotte can receive letters or gifts?
Much love and many prayers.
Sara Mooney Johnson
Amanda Pistor says
Such a beautifully-written post Jacqueline! You never cease to amaze me. God has blessed you with a lot of courage and a huge heart! Claire and I are working on a care package. Let me know if there is anything in particular you think Char would like. We miss you ladies.
Amanda and Claire
Nana Caudill says
Can I have an address to write to Charlotte?
Jacqueline York says
405 E 73rd
New York NY 10021
nana caudill says
Veronica Russell says
Thank You, Thank You for the update!! I think and pray for you often. We will continue to pray for all of your prayer requests and especially Charlotte’s Miracle <3 Hugs from Oregon friends, The Russell's
Andrea Palladino says
Praying for Charlotte and your family, always.
Katalina Russell says
Amen my darling.. All the sweet hearted families all suffering will someday see our strong Lord in heaven where there are no more tears or pain. I love each one of you and I see the Lord’s strength rise up inside you all going through all these horrific moments, steps, processes, fights and battles, sufferings, lengthy pains and angsts. God be with you all. I pray the Lord SHINES through the darkness like He is proving through these beautiful innocent babes. God bless you in every way.
Jeannie Hignell says
You amaze me, Jacqueline … I am so very impressed by the depths of your faith!! Thank you for continuing to so eloquently write updates so we know how to pray. I am praying, my friend. Please know that you and Tyler and Eleanor and sweet Charlotte are held up in prayers many times daily by this grandma in Oregon. I will also pray for all those traveling to help you. I love you, girl.
Rod Stollery says
Your latest blog is encouraging, and I enjoy the updates. I continue to pray for Charlotte each and every day and love seeing her smiling face. Praise God!!!
Priscilla Velasquez says
Keep the positivity flowing it really does do magic. Your daughter is lovely and her smile keeps me going with my recovery. I will continue praying and hoping all will go according to plan. Lots of love for Charlotte.
Rick Hale says
Thank you for your update. We will continue to pray for you and all your family. God bless you.
Prayers for all of you! You are such a lovely family, we look forward to Charlotte ‘s good health so we can grant you that wish!
Hugs from Toni & Meghan
Your Make-A-Wish Wish Granters
Barbara Garcia says
Your grandma emailed me and shared with me how you dance in the hospital. Wow! Charlotte, beauty like dance originate from the heart. It’s like breathing! I believe you dance because you are in the presence of angles and you respond in the most beautiful of worship. Everything you do is a reflection of Jesus inside you. I can feel your heart beat and it’s in perfect rhythm the His. You feel His presence and you respond only as you know how – DANCE. Little one it is as though poetry is being poured out to Him through you. I know, because it also pours out of me. Worship God in the dance; your feet sing and this brings Him joy. We are one, and I dance right along side of you. (ohhhhh, I can see Jesus smiling) You make Him happy as only a child can, in purity. I love you and look forward to the day when we can dance together. Dance on, darlin’, dance on!