Today Levy came to visit....

Today was a fun day. Today was normal. Today I watched a ‘cancer kid’ and a ‘cancer sibling’ enjoying life. Today Levy came to visit.

We have not gotten to see Levy since Millie passed away. With us never being at the hospital together and us living over an hour from each other, it is not easy to get together. Today was fun to see Little Man playing with a younger ‘sister’. He was able to do most everything with Levy that he used to do with Millie. He has missed that so much! They played kitchen, had a tea party eating chips and drinking lemonade, and they played pet shops together. The played outside on Millie’s playground. At lunch they even ran and chased each other shrieking around the table. All the things that have been absent from our home the last 7 weeks. Things were normal.

And just as it was normal in some regards, each child recognized it is just not the same with our Millie here. This morning Levy packed an extra ‘Stuffie’ (stuffed animal) to share with Millie. Her mama had to explain that Millie wasn’t here, she now lives in heaven. Little man told me after they left how much he enjoyed playing with them. He said, “The only thing Levy couldn’t do was play woofie with me mom. She didn’t understand that game.”

This is another aspect of Childhood Cancer. It’s knowing your friends die from it. It’s wondering if you will die from it. It’s seeing your sister die from it. It’s knowing that other mamas are your soul sisters, simply because they are other cancer moms. They understand your fears, they cheer on your achievements, they weep with your losses. They are part of a club that they hope no other mother will ever have to join.

There are so many types of childhood cancer. The one I’m most familiar with is Neuroblastoma. As I shared yesterday, I was introduced to it by name years ago when family friends in our church had a sweet son be diagnosed with it. I never dreamed that 12+ years later I would learn firsthand the devastating effects this cancer has on a child’s life.

Neuroblastoma is a tumor-based cancer that forms on the adrenal gland. It is usually present before birth but doesn’t start to grow until sometime later in life. If you get it under the age of 2 your body will often heal itself if I understand correctly. From 2 years and up, this highly aggressive cancer must be fought with every weapon known to the doctors. Chemotherapy, radiation, stem cell transplants, immunotherapy, vaccine therapies, and more. These kids go through so much! If you make it to NED (No Evidence of Disease), you silently hold your breath. You wonder IF, but more so WHEN the relapse will happen. For most NB kids it does happen. Many of the kids I see on the NB Facebook groups have relapsed many times over. Their families continue to rally around them, praying this time they will finally beat this BEAST. The statistics say 2/3 of Neuroblastoma kids will live to 5 years post diagnosis. They will have hearing aids most likely. They will have other organ damage from the harsh treatments. They will have a higher chance of developing another type of cancer caused by all the treatments. I’ve seen another statistic that says ½ of the children survive this disease. Either way those odds are NOT great. This is NOT a cancer you ever want to be diagnosed with.

My momma’s heart says if my child had to be the 1/3 that didn’t survive, then my prayer is “PLEASE GOD heal our friends with this disease. Heal Ady and Ruby, giving them long and healthy lives. Please protect them from the side effects this disease will attack them with.” Please pray over these two girls as they too battle this BEAST. Throw Levy in there too… she is battling Leukemia and we beg for her total healing.

I’m going to share a graphic of a statistic about Neuroblastoma. In this graphic the children that do not survive are grayed out. Let that sink in…. Millie’s life is grayed out. It gut punched me when I came across it awhile back. My girl is now a statistic. She is now the one who ‘didn’t make it’. That’s a hard thing for a mama to say, write, but especially live. Some of you wonder how we live through this? How are we still moving? How do we go on? Two words:

Faith and Gratitude

We have FAITH that God’s word it true. We have FAITH that Millie is with Jesus. We have FAITH that we will see her again. We have FATIH that God has a plan. We have FAITH that God is good even when life is bad. We have FAITH that nothing can separate us from the love of God.**

And

We have GRATITUDE that God gave Millie to us. We have GRATITUDE that he allowed her time to be with us for over 3 years. We have GRATITUDE that we had so much time getting to know her. ***We have GRATITUDE that even in her death, she is still remembered and loved. We have GRATITUDE that through her death we have become aware how fragile life is, how short our time on earth is, and how we want to share JESUS with everyone we know. ****We WANT others to know eternal salvation…

**Romans 8:38-39 “For I am persuaded, that neither death, nor life, nor angels, nor principalities, nor powers, nor things present, nor things to come,39 Nor height, nor depth, nor any other creature, shall be able to separate us from the love of God, which is in Christ Jesus our Lord.”

***Thessalonians 5:18 “In everything give thanks: for this is the will of God in Christ Jesus concerning you.”

****1 Timothy 2:3-6 “This is good and pleasing in the sight of God our Savior, 4 who wants everyone to be saved and to come to the knowledge of the truth. 5 For there is one God, and there is one mediator between God and men, the man Christ Jesus, 6 who gave Himself as a ransom for all—the testimony that was given at just the right time.”