It’s Christmastime?
You could have fooled me! We’re going on week 5 in the hospital and I haven’t been able to find the joy I usually feel this time of year. I’ve been a bad blogger and kept y’all hanging for 4 weeks….unless you read Twitter, then you know exactly what’s been going on. Truth is, I just didn’t feel like re-living this ordeal. Writing it down makes it seem so…real.
Layla had her stem cells infused the day before her 2nd birthday. The day after her 2nd birthday, the mucositis was in full swing. To say it was awful would be an understatement. I won’t go into all the gory details (again, re-living it isn’t something I’d care to do), but her mouth resembled ground beef and blood was constantly running out of it. On top of all that, it took days to get her pain meds sorted out. She had a reaction with Morphine and Dilauded – which had never bothered her before. That only left Fentanyl. She had been on a Fentanyl drip before (in the PICU) and it did nothing for her pain. But that was all we had left to try. They put her on a pump of Fentanyl, raised the dosage to that of a grown man and she was finally able to get some relief and rest.
This lasted about 8 days.
- 1st day of mucositis. Her face got more swollen each day.
Day 9 we saw her counts start to come up and she had some white blood cells. Yeah!! A few days later she had an ANC. Please don’t make me explain an ANC. You can read about it here. Her mouth started slowly healing and she was on the upswing. Her ANC continued to do it’s thing and grow until it reached 1200. Her Dr’s were thrilled!!
But then…
She spiked a fever. 104.5 to be exact. She held that fever for 36 hours.
The next day, her ANC was gone and her liver enzymes had quadrupled from 1000 to 4400. Normal is about 500. They thought she was in the beginning stages of liver failure. Liver failure, by the way, is the one thing (besides infection) we were warned about that could happen, and if it did it would be fatal. She was lethargic and extremely pale. She had platelet and blood transfusions daily, often twice a day. She couldn’t close her mouth, couldn’t swallow, could hardly even move. She had a CT Scan to try to determine of there was a fungal infection growing, causing her counts to plummet and liver enzymes to go through the roof. They found nothing. Praise God! On that same CT Scan, they saw that her liver looked good and not under any stress. Another Praise God!!
- Feeling like crap and still playing
But then, what’s going on? She was tested for every possible virus, bacteria and fungal infection. They found nothing. Her Dr’s had never seen this before. A transplant takes or it doesn’t. You get the ANC’s and they continue to grow, or they just never come back. They don’t come in strong then disappear unless there is some sort of infection. If you’ve been following Layla for any amount of time, you are aware of her ability to stump the Dr’s…often.
On Friday, December 11th, she was put on the schedule for bone marrow aspirations the following Monday. The Dr’s wanted to give her the weekend to start producing the proper cells, and if she did, she’s wouldn’t have to go through the procedure the following Monday. The weekend came and went. Still no neutrophils.
- Yes, that’s a puke bowl
On Monday the 14th she went into the operating room for bone marrow aspirations and biopsy. Basically they went into both sides of her pelvic bone with a needle and took out bone marrow fluid. They then went in again and took out a small piece of bone marrow. A few days later we got the results that we had prayed for. All the players were in the marrow, they were just very very immature and not detectable in the blood yet. Her high fever killed them all and they are just taking a long time to re-create and grow. Today her ANC is 200. They like to see it around 3000. She has a long way to go, but is on the right track!
She is now able to sit up and play. She has started drinking again and took 3 bites of jello today. Considering she hasn’t eaten or drank anything in 5 weeks, this is VERY exciting for us!!
EATING for the 1st time in 5 weeks!!
We are pretty hopeful we’ll have her home for Christmas. That should help me find more joy!!
The only reason I check twitter most days is to check on you and Layla! I will pray with all my might that she is home for Christmas. I can only imagine what that would do for your soul, not to mention you husband’s and for Jenna and Claire! I am sure those girls are wishing with their whole hearts for Mommy & Layla to come home. You are an amazing warrior mom! A role model for the rest of us that cannot imagine what you and your family has been through but can only hope we would handle it so fiercely and so gracefully! xoxo Merry Christmas!
Thanks so much for the update. Can’t even imagine everything that’s gone on there….
Know that the Lord is always with you, wrapping His loving arms around you and holding on tight!
Psalms 18:2-6 The LORD is my rock, and my fortress, and my deliverer; my God, my strength, in whom I will trust; my buckler, and the horn of my salvation, and my high tower. I will call upon the LORD, who is worthy to be praised: so shall I be saved from mine enemies. The sorrows of death compassed me, and the floods of ungodly men made me afraid. The sorrows of hell compassed me about: the snares of death prevented me. In my distress I called upon the LORD, and cried unto my God: he heard my voice out of his temple, and my cry came before him, even into his ears.
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I hope with all my might that you are all out of there for Christmas. I am so excited that she is eating & will hopefully gain some strength back.
Yippee for food!! Keep your head up Shanna & try to stay strong..although it is good to have a few melt downs now & then & I’m sure EVERYONE around you would be completely supportive of it….you are definately the dictionary definition of “supermom”. Happy holidays to you & yours 
My wife is not only a massage therapist but she is always looking for more holistic and natural ways to make our life more “natural. What we have been really seeing great results for us in our normal life is the use of a “Juicer”.
We make different kinds of drinks for the day, we combine lemons, ginger, apples , kale, romaine lettuce and a wide variety of different fruits and greens.
these all natural juice drinks leave nothing to waste and they taste great, the best benefit is you get all your daily vitamins and from both fruits and greens in one 12 ounce serving. they are natural antioxidantes and help in preventing free radicals. Vitimans in pill form can be difficult to swallow and break down in the body of a healthy human being. So for your beautiful little girl really might benefit and enjoy these drinks. If you would like a juicer let me know and give me an address and I will ship you one. I know this idea is not a miracle cure for the tough battles your daughter is fighting but I feel strongly it will aid in her daily intake of her much needed vitamins. Also check into the natural green allgys “Spirulina” and also “Astragalus” both of these are natural immune support boosters and all natural. you can get them at Whole foods store.
I hope this is helpful my son is 2 1/2 and really enjoys these drinks and we have seen a huge change in his over all heath. I know you have a totally different scenario but this will only help.
such a special little girl who has reach the hearts of so many people around the world who’s love and thoughts are with you..xx
Layla’s courage and your families has touch me and I will pray for a miracle. But rest assure that she has definetly touch many lifes your story has made me realize that I need to stop and enjoy life and my children and be happy when they are awake and healthy. Not show my happiness when they are out of my hair playing quietly or going to bed early. Thank you for reminding me that our moments with them are precious and a gift from God!
Godbless you Layla