Charlotte had a wonderful Christmas and New Years. We were able to go to my family’s house in New Mexico to celebrate and had quite the journey!
Before leaving town, Eleanor felt very warm and was lethargic. We were tempted to leave her behind but powered through and took her. We went to Dallas first, I was so excited to finally get some Tex Mex. Even with Tylenol, Eleanor’s fever didn’t break. She began coughing a dry bark. Throughout the night she kept waking, coughing and struggling to breathe. I took her into the ER and she was diagnosed with Croup. They gave her a steroid and a breathing treatment. I expressed my concern for Charlotte catching it and what the best route to prevent that would be. In the midst of it all, the PA told me she has been praying for Charlotte and keeps up with her journey. Wow! Of all the emergency rooms in Dallas, we chose one that had someone praying for our girl! Such a blessing!!
Later that day we flew to Roswell to get the Christmas festivities started. Charlotte was able to see all of her cousins, they played, laughed and ran around. They also built gingerbread houses and decorated them!
Christmas Eve came and our tradition of opening matching pjs was a pretty exciting time for Charlotte! She received a movie and blanket with her name on it!! Another Christmas Eve tradition is watching Santa leave presents under the tree. The kiddos have to be VERY quiet so Santa doesn’t know they are still awake. They get to watch him walk in, leave presents, eat their cookies and milk, and then leave. This is the first year Charlotte really understood it all.
Christmas morning was so exciting for all!! There was lots of joy, laughter, and happiness.
A couple of days after, the snow started. We are used to snow, but the wind and drifts were something new! In 24 hours more than 18 inches fell, there were 4′-10′ drifts all around. While it was a beautiful sight, it kept us stranded. There was a state of emergency called and all of the highways in and out of Roswell were closed. We ended up sticking around until Friday, 5 days later then planned.
We made it home, unpacked and were able to spend a few days enjoying each other and our space. But we quickly packed up to head out Tuesday morning to New York.
Through all of the holiday madness, after a lot of pushing and preserving, we were informed the insurance agreed to MIBG therapy!! What a PRAISE!! We already had another insurance lined up to start January 1st but there was no guarantee we wouldn’t run into similar problems. Because of the approval, we were able to schedule all of her scans and treatment coming up!
Wednesday through Friday of last week, Charlotte had multiple scans. PET, CT, MIBG, brain MRI, and an echocardiogram. The results of these scans were similar to the ones in October. Even though they aren’t as I had hoped (clear), we are still praising God there is no progression.
On Friday, I was informed before starting treatment, they wanted to do a stem cell harvest. As you all know, we have tried twice and failed. I was uneasy about agreeing to this. Mainly because Charlotte has to receive triple dose shots everyday. I feel as if we have done this so many times with no luck. After speaking with the doctor, talking it over, thinking, and praying the decision became very clear. With how much disease is in Charlotte’s body, there is a chance she will need multiple stem cell rescues. Right now she has enough for 2.5. Starting Thursday the 7th she began her shots. We had to go in every day this past weekend and Sunday night, as well as tonight, for another shot that is supposed to help purge her stem cells.
They hooked her up for the collection this morning and her Hickman catheter wasn’t working. The amazing nurses Charlotte had tried for over 2 hours to make it work. The alternative would be surgery to replace her lines. I started praying, as this was going on, multiple people randomly messaged me letting me know they were praying for Charlotte. The nurse had one more thing to try, a medicine to unclot the line in case there was buildup. As she tried again, it wasn’t working. I began to panic, dreading having to put this 3 year old through ANOTHER thing. They walked away, when they came back I asked, “So now what?” Their response was, “Hopefully it doesn’t stop” I looked down and realized it was going!!!
Tonight, they called me with her results of collection. They pulled half a million, they wanted 10 million :-/ We will try again tomorrow afternoon. If more are harvested than today, we will collect again on Wednesday.
I apologize for the lack of updates! I kept trying to write and something would come up or I wouldn’t have my computer. I hope to keep ALL of you updated more often. Sometimes I am able to post small quick updates on the Graced by Charlotte Facebook page. I know you all love our girl and we appreciate all of your words, prayers, and support (mentally, physically, financially, and spiritually)
“Give and it will be given to you. A good measure, pressed down, shaken together and running over, will be poured into your lap. For with the measure you use, it will be measured to you.” Luke 6:38
- The amazing amount of financial support! Thank you so much! It has been such an unexpected blessing! It is a definite example that God WILL provide.
- The people we know and don’t know who want to do what they can
- Charlotte’s health: over Christmas everyone who got sick had a fever, she never got one!
- The insurance approving MIBG Therapy
- Her braveness: She did a 30 minute brain MRI WITHOUT sedation! 1-2 shots every day is not a fun thing
- The support of family and being able to have both of our girls together through this
- Her lines clearing so surgery wasn’t necessary
- Retrieving SOME stem cells when we knew zero was a HUGE possibility
- MORE stem cells!! Pray we get what we need
- That NOTHING will delay treatment
- Tyler arrives in New York safely
- Charlotte is able to see the good through all of this
- Her miracle
It feels so wonderful to be able to share with you, I could go on and on but I won’t! Thank you again for everything and please keep our little fighter in your prayers.
“But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run and not be weary; and they shall walk, and not faint.” Isaiah 40:31
Molly Milby says
SOOO happy that she had a WONDERFUL Christmas Eve & Christmas day with family. Praise God that she didn’t get sick when Elenor was. Praise God also for all the good results. I love that she is getting hair ! Hope that u can come back to bible study.
Beth Skaug says
Thank you for sharing! God is so so good! I’m impressed and so proud that Charlotte was able to do a 30 minute brain MRI without sedation. That’s extremely difficult for me (as an adult to do) without getting super anxious. God is definitely with you guys and I’ll continue to pray for peace & his presence throughout your journey in NY. We’ll continue to pray for guidance and HIS miracle for Charlotte & your family. Love you guys! Skaug Family
Lena Norton says
So good to hear some many good things happening. We are diligently praying for your request and fervantly asking for His miracle for precious Charlotte!!
Love to all of you,
Lena and ML Norton
Lily Rico says
Praying for your little princess and your family. Thanks God, God bless you all!
Praying for all of you!!!
Patty Johnson says
Praise Jesus! So excited to know you were able to come to Roswell and it was such a blessed time! Praise Jesus for all the miracles you are experiencing with that precious baby. We continue to lift all of your family in our prayers constantly. Praying for complete healing for Charlotte !
We are so thankful this post is filled with many praises! Even with all that Charlotte has been through and she is going to endure — we are so glad she was approved for this treatment. We pray this is the miracle she needs. The photos show such a sweet little girl with her little sister and her happiness radiates from them. We will continue to pray for her and all the specific items you’ve listed. You continue to be such a witness, Jacqueline and Tyler, in this dark world.
Robyn Brown says
To God be the glory! There is not a day that I do not pray for her. Charolette, God, has his hand on you sweet girl. Your testimony that you will get to share someday is gonna be BIG. My husband finally got the words remission and I’m praying for your miracle. As far as I can see, he putting several miracles in place right now. Stay strong and we are praying your sweet family right on through. God Bless this precious family.
As I read your post, so much emotion comes over me, God is truly in all of this. He is the healer and He is doing great things !!! You and your heart are such an example of Trusting Him through it all. I believe that is what He wants for all of us is to just Trust .. What a testimony to me and so many others.. I continue to pray for your needs !!!
Lori Kroh says
Praise God!!!! I read every update!!
Never give up hope!!!!!
You are a brave momma!
Believing for miracles and wholeness!! Amen!
Lauren Atkinson says
Praying for you guys!
Jeann Whittaker says
So happy all of your Christmas vacation was wonderful, you got the insurance and are getting the help she needs. God is listening to our prayers. Praying 2016 will be a turn around and you can go back to being a regular family again with two healthy little girls. God be with you all.
Patti Burgess says
Thanks so much for the update! My niece is an ER nurse at one of the hospitals in Dallas. My heart and prayers are with you!
Love, Patti Burgess
monique and martin says
Praying for her
Rick Hale says
The Grace Family will continue to pray for you!
Pastor Rick Hale
Sally Green says
Thank you for the up date on Charlotte Grace…I love hearing about all she has been doing and how your family is doing. Never feel pressured to get these updates out. I love them when they come but I know you are very, very busy to say the least. I continue to pray for Charlotte and your family.
May all the Doctors be given great wisdom from our MIGHTY God as to the perfect treatments for Charlotte. God bless you all.
So glad your family have a wonderful Christmas with your family!
Linda Mooney Graham says
I just love this little warrior–praying!
Barbara Garcia says
Charlotte, you are truly a blessing from the Lord to all of us. We laugh and we cry through your Mama’s beautiful word pictures. Thank you little angel for teaching us to praise God and be thankful in all things. You have touched all of our live, mended our spirits and encouraged us to grow in the situations presented us. We love you and will continue praying for you.
Donna Amelio says
Love you all!! Thankful for answered prayers and for you and restoring my own faith in me! Love you cousin! Will continue to pray for her miracle! 😘