Good Riddance Chemo!
Chemo is DONE hopefully to never be mentioned again in our family! Layla’s chemo finished Sunday night. She is pretty sick, but still in good spirits. She has been complaining quite a bit of lower back pain in the area where her original tumor was. Dr. B thinks that is good news because it means the chemo is attacking the cancer cells there and killing them, which unfortunately causes pain. Her lab results show her uric acid levels being high, which happens as the calls are “exploding” and giving off chemicals.
She was put on a Morphine pump to control the pain, but within about 5 hours started having an allergic reaction to the Morphine – a lot of skin redness and uncontrollable itching. She has had massive doses of morphine in the past and it has never bothered her. So odd that she is having a reaction now. I wonder what will happen 5 years from now when she has built up a tolerance or reaction to tons of different meds. As it stands now, she’s hard as heck to sedate. They have to give her 3x a normal dose just to get her to sleep, then more throughout the procedure to keep her asleep. Crazy!
Now she’s on Dilaudid, aka Hydromorphone. I had never heard of this before but it’s in the same family as Morphine. It works just as well and she hasn’t had a reaction to it so far. Yeah!
She is still pretty sick and this morning started throwing up blood and stomach/esophagus lining. This is very normal and expected. The chemo causes severe mucositis, which is ulcers in the mouth and throat. The lining of the throat and mouth slough off and the mouth resembles ground beef. She’s in quite a bit of pain, and obviously vomiting is excruciating. The goal now is to keep her pain under control with the pain meds, and nausea under control with the Phenergan and Zofran. The Dilaudid also makes her very sleepy so maybe she will just sleep through the nausea. Her mouth will start to heal on it’s own once her white blood cells come back up, in about 2-3 weeks.
She gets her stem cells tomorrow. It is a VERY big day for her!! The actual transplant lasts about 2 hours and is very similar to a blood transfusion. They will give her the cells through her central line. They have been cryogenically frozen in Dimethyl sulfoxide (DMSO) and the cells along with the DMSO will be given to her. Many kids have a reaction to the DMSO so she will be pre-meded with Tylenol, Benadryl and Demerol. After she gets the stem cells, it’s just a waiting game and lots of praying that she doesn’t get an infection.
I will do my best to update every few days and you can follow Layla on twitter as well. I give short updates several times a day.
Thank you to everyone who has been praying! She needs those prayers now more than ever!!
Shanna,
Sending all our love and prayers.
I admire how brave and strong person you are.
Thinking of you and Layla this special Thanksgiving day.
Miracles happen and we will pray for the Lord’s healing for Layla.
COLE Prayer Team
Praying for you sweet Layla as she takes the next step of being forever cancer free with her stem cell transplant tomorrow. Prayers for her pain to be eased and for her to remain infection free.
A fellow cancer mommy
I found your story on twitter.My daughter also has stage 4 neuroblastoma.She is 2 1/2.She is fixing to have surgery,then the transplant.I just wanted to let you know that if your little girl gets the mouth sores,they will go away.My little girl has had them twice from chemotherapy.I was so upset when she was going through it and she had the bloody drool,she wouldn’t talk or eat.It was the worst thing i have been through so far.But it gets better I promise.As soon as those white counts come up,they start to disappear fast.Just stay strong and know there are others out there going through this too.Keep the faith and you’ll get through. Best wishes Beth Garrison
Hope all goes well tomorrow!!!!!!!!!!!!!!!!!!!!!
Praying right now!
Psalm 31:5-8: Into thine hand I commit my spirit: thou hast redeemed me, O LORD God of truth…but I trust in the LORD. I will be glad and rejoice in thy mercy: for thou hast considered my trouble; thou hast known my soul in adversities; And hast not shut me up into the hand of the enemy: thou hast set my feet in a large room.
Prayer Bears
My email address
Am here praying!
Proverbs 3:5-6 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.
Prayer Bears
My email address
Psalm 30:5 says “weeping may remain for a night, but rejoicing comes in the morning.” Here’s praying that your long “night” of struggle is nearing an end, and that the “morning” of rejoicing will soon begin.
This is heartbreaking. My mum died from breast cancer and my best friend has it now too, but I cannot imagine if one of my nieces had to suffer through it. Your daughter will be in my thoughts and I hope the bad news turns good. I’m on twitter – saraholeila
I’m stunned. I just read about this today. Didn’t have a clue till now. I’m declaring that no weapon formed against Lyla will prosper.And her defense is GOD who saves.
I’ll pass this on to everyone I can think of. We will stand in the gap for you.
Much love,
Mary Ann