Charlotte recently had a full work up of scans. Her scans came back as stable or unchanged! Definitely grateful for no new growth! Scans and blood work were the determining factors of whether or not she would be eligible for the NK trial.
On Thursday, Charlotte’s platelets were at 64, the doctor said they would need to be at least 75.
While I have been anxiously awaiting this trial, in hopes that THIS is what she would need, I began to pray. All along we have asked God for strength, wisdom, and the right decision. This whole game of cancer and the course of treatment is tough to decide. It’s a gamble. What works for one child, may not for another.
All weekend I prayed God would be clear, crystal clear. We were told because of the MIBG therapy she had in January, her platelets would go up and down on their own. I knew that bumping her up 11 platelets would be an easy feat, IF that was the route we should be going.
We arrived at 8 am on Monday for a blood draw. It wasn’t until 10:45 that I was given the results. Charlotte’s platelets were only at 68. An hour later, I met with the Doctor doing the NK trial. He shared with me that because of Charlotte’s history with high dose chemo (this would be the first part of the trial) he didn’t feel comfortable with her doing it. That because her counts were already low, she would be neutropenic and hospitalized for a longer than normal time. He told me that she would be more at risk than benefit. He believes that a lot of her cancer is mature and chemo will do nothing for it.
The other option is their hu3f8 antibody. He knew I was really anxious and wanting to do the NK trial so he told me he would let me decide. That I could have some time to consider. Little did he know, my decision was made. I asked someone much higher to give me a crystal clear answer. NK would not be the route we would take.
On Monday, we will start antibody. Charlotte has started to receive the shots for it and will continue through Friday of next week. These shots are supposed to help mark the cancer cells for the antibody to destroy. This treatment goes for about 30 minutes and is very painful. Luckily, by evening she should be back to normal. I pray this treatment works. If so, we will be able to go home in between rounds. Charlotte’s hair will grow back, she won’t lose her appetite or vomit, she will be able to enjoy some of the summer and have a little normalcy in her life l!
Oh how I pray, wish, and hope that soon, the day will come that Charlotte can feel “normal.” I have moments where I look at her, and cry. She isn’t eating right now. I’m not sure why, but her spine is beginning to stick out a lot again due to weight loss. She says that everything hurts her tummy. She constantly cries out in pain.
- This treatment to work
- Minimal pain
- Comfort through treatment
- Charlotte’s appetite to come back and her stomach pains to go away
- Karma, Charlotte’s friend, who is having surgery on her lungs to remove 20+ tumors that were called inoperable in January
Praising God for
- Time off of treatment
- Stable scans
- Options in treatment
- Days with smiles
- My family
- His plan
“Trust in the Lord with all thine heart; and lean not unto thine own understanding. In all thy ways acknowledge him, and he shall direct thy paths.”
Proverbs 3:5-6 KJV