Yesterday was a tough day. Charlotte received her first antibody treatment, hu3f8. I knew it would be tough. I’ve been told a multitude of things by children and parents. Ultimately, every child is different. Different side effects, different points of pain, different times during the infusion that the pain hits, different lengths of pain, and different results.
We went into this, with no idea what to expect. No clue where Charlotte would fall.
Before the infusion began, child life sent the music therapy lady in. She wanted to find ways to relax Charlotte. With multiple soothing noise makers, songs, and games. She had a rainbow scarf that Charlotte really enjoyed playing with.
The nurse gave her every pre med I could think of as well as a dose of dilaudid. The infusion began and I didn’t even realize it! Seven minutes in I asked if she had started, at the ninth minute Charlotte started to cry out and scream. She wanted me to hold her, then pushed me away. She squirmed and said “I can’t do this!” I tried my best to encourage and remind her that she was brave and strong. They gave her a pain rescue and she closed her eyes. Her oxygen levels began to drop and they gave her oxygen. Her blood pressure was low and they gave her a saline bolus each time. I thought she had fallen asleep, but anytime we would ask a question, she would respond. Her tummy was rock hard and her legs wouldn’t stop squirming, even 5 hours after the infusion. Charlotte eventually had 2 more pain rescues. With time, we learned she was having neuropathy and she was given a dose of gabapentin to help the pain.
Charlotte is very swollen, even 12 hours later. I believe it’s a combination of the antibody and all of the fluids she received.
The doctors and nurses were very pleased with how “well” she did. And although I know it could have been WAY WORSE, it was still hard for me to see. It was hard to hear her cries, her helplessness and confusion.
Today we will go to clinic to do a blood draw. She will also get a double dose shot of GM-CSF. Wednesday will be the second day of round one, Friday will be the last. She will have blood draws Tuesday, Thursday, Saturday, Monday, Wednesday, and Friday.
10 hours of hospital time and I’m EXHAUSTED! I can only imagine how Charlotte feels!!
Please pray for:
- minimal pain and side effects
- peace, for all of us
- that this treatment is working
- Charlotte’s miracle
Praising God
- zero allergic reactions
- getting us through day one
- our precious baby girl
- the wonderful antibody nurses
“And let the peace of God rule in your hearts, to the which also ye are called in one body; and be ye thankful.”
Colossians 3:15 KJV
“Trust in the Lord with all your heart and lean not on your own understanding;”
Proverbs 3:5 NIV
You precious souls, I’m praying every day for God”s peace, grace, love, light, healing power, and most of all that you feel his physical presence. I don’t know why this is the road you have to travel, but I know our God is big enough to carry you through it.
gosh Jacquline. What you all have been through. I am sitting here crying for you all. i’ll be praying extra hard for her to have minimum pain and GOOD results. God be with you all.
I am so sorry you had such a rough day. We love you and will continue to pray for positive results from this treatment.
Ok that brought tears to my eyes. Not big ones though. I can’t imagine seeing ur daughter go through this. Jacqueline u r a STRONG mama.
Praying for you all. Nothing is more painful than seeing your child suffer and not being able to take the pain away. May you feel God’s arms around you.
Oh I wish Charlotte didn’t have to endure this pain! I remember Noah’s first 3f8…when he was finally knocked out I totally lost it…hugs and prayers my friend! One day down!
No one can go through what you have been through without God carrying you. It is beyond my understanding why this is happening to our precious Charlotte but I continue to pray for pain free treatment and that all of you feel God’s special love for you. Sending love and hugs!!
Prayers sweet family 🙏🏻
Your in my prayers every day and I’m praying for a huge healthy positive change. Xoxo
Prayers for Charlotte and the family.
This just makes me cry for her and you. Prayers for the pain to be minimal, for comfort, for perfect results. Dealing with my own disease and pain I still can’t imagine the pain she is enduring. What a strong little girl she is. Blessings and hugs.
Charlotte, may God give you and your loving family strength to overcome. We love you.
Praying constantly for Charlotte and your family. I can’t imagine how difficult this is for all of you and I am thankful you take the time to write and update. Those of us at home are praying and lifting you up!
I’m praying for you all. You’re such a great mom – hang in there. 💙
Bless your little angel and you. I’m so sorry for all the suffering.
I can’t imagine how hard it must be to see your sweet little girl go through all that she has. You are so strong and I admire you so much for going through this. I pray for Charlotte all the time and that God will heal her. Thank you for always taking time too to update us on her so we can keep praying for her and your family.
Praying for you all, especially your sweet Charlotte!
Oh man I just cannot imagine how difficult this is to see. You seem so strong and resilient as a mother watching her child in pain! My heart goes out to you and I will continue to pray for Charlotte and your family. I don’t understand why she has to go through this! You are handling it so much better than I would, that’s all I can say. Much love.
Praying for your pain and dear Charlottes.
Will be starting every day, this week, w/ a prayer for Charlotte and you all. And the day will end the same.
Susie (Krista Dowding’s MIL)
Praying for Princess Chatlotte and Family…. The Lord is your Strenght… He will give you peace in the middle of the storm!!! 🙏🏼
Big hugs for all of you, so heartbreaking!
Praying for your precious little girl. So sorry you have to walk this road, bit know that you are bot alone and that God is by your side. This made me cry. I pray that God would be with Charlottle and ease her pain and heal her little body.