Looking back on this past year for our Lilli/family, I am actually sad to say goodbye to 2019. We have so many wonderful memories. Watching Lilli enjoy her best life after battling Cancer in 2018. It was a year that truly brought so much JOY to our lives. She was cancer FREE and we definitely celebrated it every moment we could.
Looking back on our last month, instead of enjoying everyday toddler life and slumber parties, she’s here battling for her life once again. Since the return of cancer, Lilli has endured; surgery for placement of her double Lumen Hickman line in her chest chest, 10 days of chemo therapy, every 6-8 hours IV meds: antibiotics to help fight infection, 6 platelets transfusion, 2 red blood transfusions, cap changes every 3 days, Hickman dressing changes every 7 days (she cry’s through the whole thing as she has sensitive skin and the cleaning product/tap burns) and gosh many other things I just can’t think of or begin to understand.
We have sat by her side and cried, while watching her go through some of her worst moments knowing there was nothing we could do to help her. However, when I look at where we are today, I find some peace within my worried soul. This little girl fights everyday and is still finding joy in her life no matter where she is! Lilli is pure sunshine and a Rae of Light. Watching her smile, dance, sing, love and be her darling little self, helps US get through the worst days. She runs the hallways, plays hide & seek, colors, sings dances, giggles, gives hugs & kisses, loves her iPad, gives knuckles to her awesome care team, rides little tyke cars down the “Strip” (hallways) and when she sees another child with IV “owies” she wants to give them a kiss to make it better. Lilli loves NO matter where this girl is and SHE SURE fights like a SUPER HERO and LIVES her best life!! I sometimes forget she sick. She is teaching us everyday to be strong, courageous, humble and embrace every minute. Because that is what it’s going to take to battle the ugliness of CANCER and WIN!! With that said, going forward we know we have bigger battles to fight. We know it’s nothing we have ever fought before. AND We know, we are going to need everything in us to help get us through this STORM.
A few Friday's ago, we met with the U of M, Children’s Masonic Bone Marrow Transplant Team and have a multitude of intense treatment to come, plus, the worries of infection. Recovery time is roughly 60-100 days in hospital. During that time, Lilli will be pretty isolated. Along with us. We will need to do everything we can to keep her from getting any infections. Depending on how she does and when her counts rise, we will then need to stay at Ronald McDonald House off campus for a few weeks. Going forward from that point, we are still unsure. We know she will have well over 11 different medications she will need to take on a daily basis, she has high risk of organ failures, low immune systems and may possibly have to have an NG tube as her nutrition and body may be compromised from well everything!! Apparently the U of M is known for their transplants as they were the first to ever do a transplant, however, they have only done 5 transplants on kids with Down Syndrome in the last 5 years. We also know, and there is no easy way to say this... Lilli’s risk of relapsing after Transplant is high 30-40% and her survival rate is 70-80%.
It breaks my heart knowing she has a year long battle ahead of her and there is nothing we can do to stop it or make it go away. Except give our little girl to our Heavenly Father and let him take care of her. We leave her in his hands and to all of you. We continue to ask for nothing but prayers and love to help us all through this difficult time. We know we are not the only ones battling. So many other warriors need you too. Please never give up on them either. Pray for our families, our friends who know our Lilli/others as they are in this fight with us all. Hug them, send them a message, pray for them too please. They are hurting and they are scared. And they need to know they are not alone either.
WE serve a mighty God and “together” WE FIGHT and Together we can WIN!!
You are all such a gift to us and our Princess Warrior.
Stay safe, stay humbled and stay kind! ~ Krista G.