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