It has been so long since I updated. I apologize for that! This post will be a little bit longer than most, to catch you up on not only treatment but the fun times we have had!
Charlotte has finished her 3rd round of hu3f8 antibody. The first day was rough, as it usually is. Charlotte hit low blood pressure with a high heart rate. They had to reverse her pain meds to get her to a stable position. Because Monday, the 4th, was a holiday, she received two consecutive days of treatment, making the pain pretty unbearable on the second day. I felt completely helpless as she screamed and cried for hours after the infusion. We gave her every medication possible with no relief. Friday was an easier day with a quicker rebound for our little Charlotte.

The Monday after was her simulation for radiation. They made her mold, did a CT, and measured the exact radiation spots. They had to “tattoo” these spots so it would be exact every time; The spots are tiny, like pen marks. My awesome 4 year old did ALL of this without sedation! She amazes me everyday with her patience and bravery.

Charlotte also received a PET scan to determine her cancers activity. She was not able to eat or drink until after the scan to prevent false positivity. This scan was used to decide the radiation dose necessary. The results came back as stable!! Praise God!

She began radiation, 2 times a day on July 18th. This is to three spots, her abdomen where the main tumor was and to two of her ribs that showed growth in the previous CT. She has done all of these sessions without sedation! The techs and doctors have all been impressed with how well she just lays there. Radiation to the abdomen will end tomorrow after a morning and afternoon session. She will continue radiation twice a day to the ribs until next Thursday.

August 1st will be her first day of round 4 of hu3f8 antibody. This treatment will be on Monday, Wednesday, and Friday.

The following week she will have a brain and orbital MRI, a CT scan, a MIBG scan, and a 4 point bone marrow biopsy.

Through this much longer than anticipated trip, we have had some fun, memorable experiences. It started with an unforgettable 4th of July. We rode from the Ronald Mcdonald house in NYPD buses to a front row view of the famous Macy’s firework show. Our girls will NEVER look at fireworks the same! It was truly amazing!!

We celebrated Eleanor’s 2nd birthday here. I always feel like she is left out. She doesn’t experience playdates or other things Charlotte did at her age. This year I planned on doing something she would remember, until I learned we would be in NYC without family. Well, any plans I may have been making were topped by Candlelighters NYC. Barbara Zobian went above and beyond for my precious girl. It was definitely one for the books, a day full of candy and celebration!

 

 

 

 

 

 

 

 

Candlelighters NYC also set up a sunset cruise with the NYFD. We went out on one of their big boats and came right up to Lady Liberty, we were also able to see the Freedom tower, the Brooklyn bridge, and the views of Manhattan. It was a beautiful sight. The firemen also barbequed for us after the boat ride.

 

Praising God for:

• Our good times together
• The blessing of friends, people, and organizations to make this easier
• Stable PET scan
• Calm nerves for Charlotte as she undergoes so much time laying still in radiation
• Our NYC friends

 

Please pray for:

• Minimal pain with affective treatment
• Clear scans
• Minimal side effects with the radiation to come
• Our friends fighting, all of them but at the moment, specifically for RJ, Karma, and Emily
• Charlotte’s Miracle

“Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.” Joshua 1:9

“Rejoice evermore. Pray without ceasing. In everything give thanks: for this is the will of God in Christ Jesus concerning you.” 1 Thessalonians 5:16-18