I have spent this Christmas season really trying to savor every moment and reflect on our lives and my faith. I am seeing first hand many of the works of God over this past year. Billy gave me the most amazing Christmas gift. He had all of my blog posts from Julia's cancer battle bound into four volumes. It took me several sessions, but I read through the whole thing that day. At times it was like hearing it for the first time. I read some entries hanging on every word, like I didn't know the outcome. I realized just how many times God has carried us this past year and shielded us with His Mighty hand. And with fresh tears and gratitude I could do nothing but give Him all the glory and praise. There are days I am so thankful and full of joy I want to shout it from the rooftops! God has been so good to us.
I have seen the changes in myself. Some were subtly happening along the way and others are just coming to the surface. I am reading Angels Thomas' book, Tender Mercy for a Mother's Soul, right now (another awesome gift). It's taking me forever because her words resonate so pure and true with my heart. She writes,
"When you run toward God and draw near to Him, an amazing thing happens in your soul. God begins to heal and mend. He starts to fill up and restore.The car blows up, the dishwasher leaks, the children are screaming; and right in the middle of it all- God comes and gives you His peace. It is a supernatural experience." (Angela Thomas)
This has become my life. I have experienced that supernatural countless times this year. I felt it in treatment, in surgery, in decision making, etc. Most recently, I felt it on our adventurous trip up to PA. I could actually feel God's presence. I did not feel stress. I enjoyed the quiet time with Him and trusted His outcomes. What should have been an annoyance, stress, and inconvenience was in every way a blessing. The situation is what it is, I am the one that has been changed.
"Our God really does come and find us. He uses broken hearts and godly friends to make us look more like Him. He graciously interrupts the perfect to restore the passion. He is faithful to seek out His own and to do whatever it takes to make us into His likeness. He calls us His beloved and mercifully saves us from our sin and ourselves." (Angela Thomas)
Our experience with cancer has been a blessing to all of us. I know that sounds crazy and there are moments I wrestle with feeling that way. I still believe it, but I don't always feel it. We have been witnesses to some of the amazing things God is doing. He has used us in many ways to touch the lives and hearts of others and He has shown us evidence of the impact of our testimony. He doesn't owe us any of this, but He loves us so much He gives it to us. It is a gift we will be unwrapping for the rest of our lives. I still sit in awe and anticipation of the plans He has for us and the doors He is opening.
Some moments I am just angry at cancer- not often- but it does surface. At the end of the year we like to look back at pictures from the past year, relive memories, and reflect. As I look at pictures from the early months of 2009, I am drawn in by the sweet, innocent face of our two year old with blond ringlets, deep brown eyes, and a captivating smile. Our life has changed so much in less than a year. This picture is from last Christmas (2008)
I can't help but feel like cancer stole that little girl from us. Going through this experience is like having your child taken from you, their organs surgically removed, poisons injected, body radiated, and head shaved. And then we are left to pick up the pieces. I'm sorry that sounds so harsh, but fighting cancer is harsh. Nothing about it is easy and it's an all or nothing type process designed to kill cells while causing the least amount of damage. I know God is right beside us through all of this. Don't get me wrong, I am overwhelmed with thankfulness that she is here with us today and healthy. I know He has ordained this path as part of His perfect plan and I trust that. I am so thankful to God that she is here with us today and He has saved her life, but there is still a loss. Mostly a loss of innocence and simple childhood joys that we can never give back to her. I know God has a plan and I am so confident to be walking with Him, but I mourn for that sweet girl and all she has had to go through.
The tears still flow very easily. I find myself crying often. Sometimes it catches me completely off guard. If I'm alone in the car or at night when the house is quiet the tears come easily- usually brought on by a song, a memory, or a concern for the future. I also cry over simple things too- generosity, compassion, empathy, commercials. I feel like it is always just under the surface. Not always tears of sadness, but also tears of joy, compassion, and HOPE.
My emotions have become somewhat unpredictable, but I am learning to see it as a blessing. God is working and putting the broken back together and healing the hurts in His own way and time. I don't want to intervene and try to fix it myself or turn off parts of my heart and pretending it's not there. I'm not looking for a quick fix to happiness. God is not in the business of making us happy, He wants us to be holy. I've learned to live with my cracks and nor try and hide them. They are glimpses of God's work and I wear them with pride.
Julia has been feeling good. She still struggles with bowel issues. The medicine regimens work, but the problems remain. She has done remarkably well the past two weeks being in PA. She has had limited endurance for being away from home and in social situations. She has thoroughly enjoyed being here and is finding her social side again.. She still tires easily and has a had a few meltdowns, but overall it was more than we ever imagined. She has talked more about her treatment and feelings about the hospital. She is still feeling the limbo of being out of treatment but still under care. She asks regularly when her next appointment is, what will happen, and tells us she just wants to go see Ms. Karen, but not flush her port. We go back for labs, checkup, and flush on Jan 7th and she has her next round of scans at the end of January. The week before Christmas she was having regular pain under her right side ribs. It was enough that she had to stop what she was doing and lay down from the pain. It is so hard not to let your mind go to the cancer. On this side it will always be a consideration.
My uncle's nephew (through marriage) is a Wilm's with anaplasia survivor, now in college. (Amazing how God works that out!) I had a chance to talk to his mom and asked her when the cancer concerns go away. She said they don't. I kind of thought so. They still worry about secondary cancers, side effects from surgery, chemo, and radiation, etc. There are so many late term side effects possible and no time table. It becomes a regular question- Is this something normal or is this related to the cancer? On this side of cancer it is always a part of the equation. We have to live with it, we can't leave it behind.
Julia's next milestone marker is October 2011- two years post treatment. Most Wilms' with anaplasia recurrences occur within that time frame. This is why she is scanned every 3 months at this point and the port remains. Statistically, of the 40 cases like hers each year, 16 will have recurrences. It is hard to wrap my mind around. Once you've been 'one in a million', it is hard to find comfort in statistics. And it's not just about the numbers. Those aren't numbers on a page to us. Those 40 cases are children, just like ours, and the thought that 16 of them still have a battle ahead brings me to tears. It is a painful reminder that cancer is a part of this world and is cruel to our children.
Vinny is back in for round two of chemo this week. They received a Christmas miracle on Monday. His chest x-rays revealed that the lung tumors are shrinking after only one chemo round!!! God is clearly in control and has His own plan. We will faithfully wait and pray in HOPEful anticipation. As he begins this next round of heavier chemo his body is feeling the effects. please pray for his strength, endurance, healing, comfort, and protection as these drugs do their thing. I have also cried many tears in prayer for sweet Ellie this week. Her battle against relapse continues and her body is in such pain. Her mother recently posted the following...
I asked God to make my sick child whole.
God said, No.
Her spirit is whole, her body is only temporary.
I asked God to grant me patience.
God said, No.
Patience is a byproduct of tribulation
I asked God to give me happiness.
God said, No.
I give you blessings; Happiness is up to you.
I asked God to spare me pain.
God said, No.
Suffering draws you apart from worldly cares and brings you closer to me.
I asked God to make my spirit grow.
God said, No.
You must grow on your own, but I will prune you to make you fruitful.
I asked God for all things that I might enjoy life.
God said, No.
I will give you life, so that you may enjoy all things.
I asked God to help me LOVE others, as much as He loves me.
God said... Ahhhh, finally you have the idea.
In the world you might be one person, But to one person you just might be the world'
'May the Lord Bless you and keep you" May the Lord Make his face shine upon you, And give you Peace......
