Charlotte finished her 10th round of hu3f8 antibody/immunotherapy on Friday. Our sweet girl always amazes me with her pain tolerance. Monday and Wednesday, she received one pain rescue. Even though she was still hurting she didn’t want anymore pain meds. Because of this she rebounded much quicker and was back to herself much earlier than usual.
Friday, was a tougher day. She had 4 pain rescues and still was uncomfortable. Her blood pressure was high as well as her heart rate. During this treatment, Charlotte gets her blood pressure and temperature checked Saturday, Sunday, and Monday. Saturday her blood pressure was higher than normal and it took some time for it to go down. Sunday, it was very high. Although it is a common side effect, Charlotte NEVER has high blood pressure. The doctors wanted to admit her overnight to observe her. I pleaded that we give her some time and see if it would go down. After 4 hours, it did and we were able to go back to the Ronald Mcdonald house as long as we came to the hospital first thing Monday morning.
Monday morning came and I thought for sure her BP would be back to normal, it was not. We spent the day at clinic waiting for numbers to drop. Unfortunately, they never came down to where we expected and we had to extend our stay. It was uncertain how many days it may take for Charlotte to get to a safe condition to fly. Tuesday we headed back with lots of prayers and hope that she would be good to go. They checked, and she was good to go! The doctors cleared her for travel and we were able to plan our trip home!
Through all of this, we were able to have some fun, thanks to Candlelighters NYC. Saturday we went to see the Pinkalicious show. It was a cute show that the girls and other children thoroughly enjoyed! After, we had dinner with our friends we hadn’t seen in a while. On Sunday we had tickets for a magic show, unfortunately those plans got cancelled because of our hospital trip.
Because of the unexpected hypertension, Charlotte will not be getting an 11th round of treatment. She will scan and (God willing) move onto the vaccine trial.
This was not MY plan. I felt that because we were finally getting good results in scans, more treatment could clear her. Charlotte has never had the side effects many people worry about with antibody. It made perfect sense, to ME, that more treatment was the smart thing to do.
My:Me, I do not know.
I was reminded that HIS plan is perfect and that maybe this was a subtle slap in the face that our baby girl is okay. That HE knows what I do not.
Many have asked if I am okay with this new plan, I am. I am trusting that this is Gods plan for Charlotte.
Our posts have been spaced out due to the lack of hospital time. Our last break was 6 weeks and oh how wonderful it was to feel somewhat normal. When we are home, we just enjoy being home.
Please pray for
- continuous joy for Charlotte and our family
- a strong immune system
- continued health
- good vitals
- the cancer to be completely matured
- Charlotte’s miracle
Praising God for
- safe travels
- protection from sickness through our travel
- happy girls
- answered prayers
- minimal complications
- a plan moving forward
- Charlottes miracle
“Trust in the LORD forever, for the LORD, the LORD himself, is the Rock eternal.”
Isaiah 26:4 NIV
“rejoicing in hope, patient in tribulation, continuing steadfastly in prayer;”
Romans 12:12 NKJV
“I will say of the Lord, He is my refuge and my fortress: my God; in him will I trust.”
Psalms 91:2 KJV
Natasha Flora says
Your constant strength and continued faith is admirable. Always always praying for all of you.
AnnaMae and Charlie Johnson says
Much love an prayers continue for Charlotte,and family..Always😇🙏🙏🙏
Debbie Pantenburg says
Jacqueline, please feel free to contact me to catch up and see how Pediatric Foundation can help you with travel expenses. We are so grateful for Charlotte’s journey toward health.
Sweet Charlotte and dear Charlotte’s Mama
Thank you for allowing strangers to share your struggle and your victories. We’ll visit face to face one of these days but until then may you have many, many reminders of God’s constant presence and guidance. “Do not fear, for I am with you; Do not anxiously look about you, for I am your God. I will strengthen you, surely I will help you, Surely I will uphold you with My righteous right hand.” Isaiah 41:10
Denise graves says
Our continued prayers for your sweet Charlotte.
Oh my goodness, you guys have been through so much. Hugs to all of you! I can’t wait for Charlotte to be well enough so we can grant her magical wish!
Love from all of us at Make-A-Wish
Standing in agreement with your prayer requests and Praising God for His continued Strength and Peace enveloping your entire family. Believing for His Covering and total Healing for Charlotte. May God continue to Bless you all.
Kristy Cross says
Constant prayers, constant prayers, constant prayers. Your strong faith is a light to all of us. Your family is such a blessing to so many
Amanda and Claire says
It is a wonderful thing to let go and let HIS plan be…..although not always easy. Good for you! We miss you!!!
Veronica Russell says
Thank you for sharing your journey with us…though I wish we could already see Charlotte’s Miracle, I believe it is in the works…in God’s perfect timing. We will continue to pray for all things good for your sweet girl, your family and the Drs. Hugs ooox
Ray & Jackie Marsh(great grand patents) says
I believe that great grand parents prayers avalith much, we will continue to ask for God’s healing for Charlotte Grace.
Suzanne Mickel says
Thanks for your update. Believing with you.
Rudy & Sharon Catania says
Thank you for your update on Charlotte. The sweet baby girl hasn’t had enough time of being a baby girl and has suffered trying times, along with her parents. I believe God does not give you too much to struggle through, but it can reach a plateau with feeling so helpless. Our prayers continue for all of you. God is love. Praise God for all he has done and continues to do. Never give up!