Not the “Vacation” We Wanted

August 15, 2018 my family and I were packing the truck, waiting for my husband to come home from work so we could start our vacation. We were headed to Florida, Universal Studios Orlando.

My 9 y/o daughter came into my room limping. She had two big red knots on her leg. She said she bumped it, but mother’s intuition overcame me and I took her to the doc. Long story short, we were rushed from urgent care to the ER and then an hour and a half north to a children’s hospital.

Why has this happened to my child?

The knots were severely painful and evolved over the next few days. Three days into our stay, ironically the one year anniversary of my mother’s death, my 9 y/o child was diagnosed with AML leukemia! “WHAT, I screamed” as tears flooded my face. She just had two knots on her leg. I wanted to go back home and forget I ever took her anywhere except to Universal. One week later her knots were diagnosed as Sweets Syndrome.

The next few weeks were the worst. She got really sick (and it wasn’t even from the chemo) and moved to the PICU 3 times in 2 months.

To top things off she has two abnormalities in her leukemia cells, 6/9 gene flip and flt3 mutation. AML is mainly an adult leukemia, it’s rare in kids. Flt and 6/9 flip happens in less than 2% of pediatric patients and it has all happened to MY CHILD! In order to have a better fighting chance to beat cancer FOREVER, the docs decided a bone marrow transplant would be best. After three rounds of chemo, radiation, 3 spinal taps, and 3 surgical procedures, we left one unit for another to begin the transplant road.

Our faith is our rock

Today is the last day of January. We have been in-patient since that fateful day. We had to leave our home, family, pets, and friends to be here. But she is still here and the donor cells engrafted. We have made it through so much, but still, have so much more to get through. She is suffering from Graft v Host Disease (GVHD) in the gut. As soon as this is under control she can be discharged, but she must stay at an apartment we have in the city and come to the clinic on a daily basis until the Dr. clears us to go home. What a sweet day that will be…

All-in-all, we trust in the Lord that she has been completely healed. We thank God for her and thank him for our journey as there is a reason she has suffered so. We keep our heads up and take it one day at a time.

We are blessed and know God is our healer!
Know he is yours too

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