This week has been a long one! Wednesday, we started scans, meds, and injections. Charlotte needed a red blood and a platelet transfusion. The doctor came in Wednesday, before transfusions to say hello and that she was glad we made it safely. Transfusions went great with no problems, thank you for your prayers.
Thursday Charlotte had a 90 minute MIBG scan. This scan would let us know if the therapy worked. Our doctor is always pretty good at letting me know right away, even before getting the “official” reading. Well, I got that call. The CT showed growth in a few places and her MIBG scans were still lighting up. The treatment had no effect on her cancer. So many things ran through my head, but mostly my thoughts were “Now what?!” I knew there was a good chance the MIBG therapy wouldn’t work, but I NEVER expected to hear there was growth. I felt crushed, like someone was squeezing me and it was impossible to breathe.
The doctor and I spoke for a while. What we could do, what I did not want to do, and what would be ahead. Because of the growth of the tumors near her spine, she ordered a spinal MRI. The soonest they could get Charlotte in was the 29th! I told them to schedule it without anesthesia and we would figure it out. I was worried because this MRI was an hour long. I can’t even hold still that long! Miraculously, I got a call that there was a last minute cancellation and to be at the hospital at 7 am.
Bright and early we were there. Charlotte went back and I sat in the waiting room. Praying, researching, and noting on what to do next. I sent multiple emails out and reached for other opinions. Knowing the chemo they wanted to do and Charlotte’s history with with one that is similar to Cisplatin (the poison that damaged her kidneys before) I was hesitant, VERY hesitant. After speaking with the doctor and other parents who have done the same combination, we have decided to do a lower dose of a combination known as ICE (Ifosfamide, Carboplatin, and Etoposide) this will go over 5 days and then they will do a stem cell rescue.
Because of the growth, they are wanting to be aggressive. After recovering from the rescue (giving her stem cells back that were previously collected) we will know the next plan.
- Surgery, which was not possible before
- Proton radiation to the tumor they are concerned about
- NK cell trial
The tumor board will meet on Tuesday to discuss what should be done. Chemo will also start Tuesday morning and will run over 7-8 hours.
As of now we will be here through March, possibly until April. EVERY TIME we have come to New York I have over packed, except this time of course! I even forgot sneakers, seriously!!
This trip has not been a complete let down. We have met some amazing people that are going through the same thing. Charlotte has made friends and loves going to the playroom. Sunday we made a trip to the Bronx Zoo with one of our new friends, even though it was cold we saw many animals and had a great time!
Please Pray:
- Charlotte responds well to this chemo with minimal nausea
- Her kidneys are protected and feel zero effects
- The doctors reviewing her case and the decisions made
- Peace for our family
- Safe trip for Tyler and Eleanor on Thursday (we miss them soooo much)
- Ultimately Charlotte’s Miracle
Praising God For:
- New Friends
- Charlottes good spirits
- Charlotte’s health getting to New York (she was neutropenic and I was so nervous flying across the country)
- God’s hand on all of us
Even though this trip has been a hard one with the news received, our hope lives on! At this point we still have multiple options and with God we have unlimited.
I have my moments of weakness, my moments where the tears don’t stop, but God has me, and He has our daughter. I have to rest in that. Without it, I know I wouldn’t survive. I am grateful for your prayers and I beg you not to stop.
God’s not done with Charlotte yet, so don’t give up!!
“Wait on the Lord: be of good courage, and he shall strengthen thine heart: wait, I say, on the Lord.” Psalm 27:14
You can send her cards or letters at:
Charlotte York
405 E 73rd
New York NY 10021
Big hugs and well wishes from your Make-A-Wish family
Oh Jacqueline,I can’t even imagine what u thought when u heard that there were more tumors. I took a HUGE breath when I read that. That’s wonderful she’s making new friends😃😊😄😁!!! God has control of this & doesn’t want Miss Charlotte to go!
This breaks my heart to learn that there was growth. We are praying for you all every day for strength, love and hope.
Brian and I will continue to pray for a miracle of healing for your courageous Charlotte. We went to a Mr. Thunder event last night for Sparrow and the outpouring of love and prayers is high. Keep strong.
Continued prayers for you and sweet Charlotte..stay strong and feel comfort that there are so many people praying so hard everyday!!
Jacqueline and Tyler, God sure knew what He was doing when He blessed Charlotte with such amazing parents. He knew she’d need your unwavering faith, your never ending love, and your incredible strength. You are all in our prayers and we rejoice in the glimpses of glory you are seeing along this journey. Thank you for the update and for Charlotte’s address. ❣The Knutz Family
My family and I continue to lift Charlotte and your entire family up in our prayers! We serve an awesome God, whose ways are higher than ours, I trust that He has each if you in His mighty, capable, and loving hands.
Jacqueline,
You are an amazing young lady and mom. I pray so hard for your baby girl. I’ve never met either of you but love you both dearly. My husband and I pray through you list so thank you for sharing!! I will not give up hope for you and Sweetpea! God is in control and we will continue to plead with Him for you!
Love you!
Lena Norton
So very sorry it wasn’t the news we all wanted to hear but God is faithful and I know He has His arms wrapped around you all. Prayer will continue to come your way always. God never grows weary so neither will we! We praise Him for all the good He is doing in Charlotte’s life!
Prayers continue daily for you ALL! You guys are such an inspiration…Completely an Amazing little Family. I will be sending a little surprise along with a check for our shirts which we love and will be posting a pic soon. . Love and Big hugs to you ALL! 😘
Continuing to pray for sweet Charlotte and your
entire family. You are all so strong ,truly amazing. We love you and are wishing you the best always! Team Charlotte Strong!
O dear jaq, we WILL NOT stop praying!!!! You are joined in spirit and faith in HIS power, love and peace. May you be absolutely saturated every single moment by His perfect presence. You all are ever on our hearts and in our prayers
I have been following Charlotte’s story after hearing about her from Clayton. We believe that we serve a God who is the God of miracles and are praying for your sweet daughter!!! I have started a song for Charlotte that is still in the most basic form but I’d love to get you the file before it is complete! I know that God has plans and a purpose!!
Thanks so much for the update. Its so good to know how to best pray for you all.
We are sending a little card and story to Charlotte today – her positivity and strength, with your faith will carry her xxx
Praying for your family, Charlotte weighs heavy on my heart. Please know that we are all praying for that miracle. A little something I found for Charlotte.
I hear no voice, I feel no touch,
I see no glory bright;
But yet I know that God is near,
In darkness as in light.
God watches ever by my side,
And hears my whispered prayer:
A God of love for a little child
Both night and day does care.
— Anonymous
Well my heart sunk a bit when I saw the news but then I realized God does not always give us what we want but he is faithful to our needs. He has given you that precious gift Charolette. He is faithful and he loves Charolette as well as he loves you. My faith has not wavered and I will continue to pray for Charolette and her miracle. I will pray over that list daily. Even though you don’t know me, I will stand in the gap praying you through. Each time I look at her sweet smile it reminds me to be faithful in prayer and enjoy today!
Praying still – it’s okay to be weak, and fall apart – it is allowed – when we are weak, He is strong…and how many times does it day that He is very near the broken? I think our weakness draws Him. Speaking Life and health to your girlie-speaking…speaking broken wholeness to you – blessing to your own broken heart — weeping with you – not tears of sorrow, but of vulnerability, and thankfulness to God for all He is to you and your family in these days…sending love – His!
Please let Charlotte know that her friends in Roswell love her and will continue to pray for her. God bless you.
Praying for all of you!
I don’t know you and Charlotte personally, but I could feel the amazing spirit and energy supporting you at the Summit High live auction. While some of this might feel like a “setback”, maybe it is a just a longer step down the path to recovery. Our family is sending you a boatload of strength & healing vibes. xx
Jacqueline,
Praying and won’t stop. My thoughts have not drifted far from you and Charlotte since I read this update. God tells us to pray without ceasing, and I have been. You continue to exude trust in our Creator and undoubtly are showing others that it is only in the Lord we find our strength, healing,and ultimately our Salvation. We love you all.
Hi guys, I’d love to share Charlotte’s story and encourage others to donate. Is there a GoFundMe or other account they can contribute to? I am a friend of the Pistor’s and it breaks my hear to see what your sweet girl is going through, her spirit is so awe-inspiring.
thank you for sharing her/your story –
xx
Sarah