Elena's appointment went very well today.
Her counts have dropped, but that was expected after starting the antiviral medication. Her magnesium and calcium levels were also low. Cyclosporine, the anti-rejection drug causes this to happen. So, Elena had to have an hour long infusion of magnesium while at the clinic today and will be taking calcium and magnesium supplements now.
Her next appointment at the clinic is on Monday.
It's hard to believe that by Monday, September will be gone.
September 1st was a Saturday - it was the 38th day after Elena's bone marrow transplant. We shared with you that our family was once again participating in CURE's Kids Conquer Cancer One Day at a Time fundraising campaign and that it was the first day of National Childhood Cancer Awareness Month.
This week, we were reminded by a friend that when you have a child who has been diagnosed with cancer - every month is childhood cancer awareness month, every day there is a reminder. It is a reality we can't change. What we can do is continue to raise awareness and choose joy.
Regardless of the statistics that are published, there has been very little advancement when it comes to pediatric cancer. Every day, two full classrooms of kids are diagnosed with cancer. And still, only 2% of federal funding for cancer research is directed at solving cancers that impact our children. While doctors and researchers have made strides in the battle against so many other types of cancer, the lack of funding and awareness for our children has led to an insignificant improvement in survival rates for pediatric cancer over the past decade. For every five children diagnosed with cancer, one will die.
You can continue to pray and share our story with others. Most of you know our story and know all about our family's ups and downs. We think we have a simple story. We think we have a story of trials and triumphs. We still have our children to hold, to tuck in at night, and to wake up to each morning.
Others do not.
Below is a blog post from a beautiful young woman who seems to be at the end of her journey here on earth. She is another face for you to put with childhood cancer. But she is more than that. We have had the pleasure of meeting Laura more than once. There are no simple words to describe her. She is amazingly wise, thoughtful, and strong. She speaks the truth. We pray that when Elena and Liv are 20 years old - they will have Laura's strength and steadfast faith in God.
Six days ago:
There are not a lot of words coming to mind right now about how to say what I am about to say. It is not anything I have ever been prepared for, and not something I think anyone is ever prepared for. I hate long and suspenseful intro’s- “beating around the bush”…so here it goes. The last three weeks- the hospital stays, the feeling horrible, etc.- has accumulated to us finding out that my cancer is still spreading. The last treatment, the samarium that I was given in Texas about 6 weeks ago, did not do what we were hoping it would do. My doctor out there called me one morning about a week ago while I was faking being asleep, leaving me a message to urgently call him back- and when I spoke with him, he gave me the bad news that they no longer have any options for me. The samarium was our last shot- because of my poor kidney function, I am not eligible for any other trials (trials require that your kidneys be in good condition for liability issues and blah blah). 5 years of chemo didn’t work, radiation didn’t work (to the extent we needed it to), angiogenesis didn’t work, internal radiation didn’t work… so here we are. We are having to make the devastating decision to stop treatment. The cancer is too aggressive and science is at a loss as to what to do. My body is so, so exhausted- and I am so, so exhausted.
It has been the hardest past few weeks of my entire life- harder than the month I was on high-dose ifosomide, when I was having seizures and laying basically unconscious for weeks at a time- even harder than when I was first diagnosed. I haven’t really distinguished whether or not knowing that my life is limited is a blessing or a curse… I am thankful that I have an opportunity to be able to tell people I love them and to reflect upon my life, but at the same time, I am crippled with anguish and fear. My emotions are shot, and my body is so fragile and weak- I hardly even recognize myself anymore. The tumors in my lungs are making it really hard to breath normally and fully, so I had to be put on at-home oxygen, and am basically on bed-rest all the time. I was officially admitted into hospice care on Wednesday. Basically being on hospice means I won’t have to go to the hospital at all anymore- the company we are using (ironically but divinely called “Journey Hospice”) can do everything a hospital can do at my house- even x-rays and CT’s and things ER’s can do. The only thing they can’t do is operate. So, I will be staying at home until… well, let’s not go there right now. But anyways, I’ve been really reluctant to post anything about any of this because quite frankly, thinking about it is extremely heart-wrenching for me. Prior to this post, only a select few knew what was going on…but for the sake of all those who have loved and cared for me over the years, I wanted to let you know what was going on.
There is nothing that I need or want. I know people want to help me somehow, but honestly I do not wish to receive any presents or money or anything like that (other than flowers if you are so inclined). My deepest wish is for people to pray for my friends and family… the thing that rips my heart up the most is knowing that my friends and family are in so much pain over losing me. If there is one thing I would ask for them, it would be that they have peace and that they would find joy. Everything that surrounds me emanates with the love from the people in my life- from the pictures on my wall to the clothes in my closet, and the little gifts and knick-knacks around my room from different experiences I have had. I am so incredibly blessed, and most of my tears come from basking in that realization. I have always known of these blessings, but I have never felt them so intimately until now.
All of this being said, I still believe that God has the power to heal me- even now. But, my heart is pretty sure that His healing is not going to be in a physical form. Even though this is not my ideal circumstance by any means, I have full confidence that I will be in Heaven, fully healed, fully restored, and fully new. The cancer WILL BE GONE. It may seem like cancer won, but it hasn’t and never will. God still has the victory, and I am humbled that He has chosen me to come be with Him. I am still filled with grief and fear over what is to come- but who wouldn’t be. That’s what makes me human I suppose. Thank you to all who have been there for me and who have followed my story- it is a story I know I was supposed to tell. I am not sure if I will be writing in here again- I only write when I feel led. But just know that my heart holds deep appreciation and love for all of you, and that my journey is not and will not ever be over.
Our hearts ache, we are praying for Laura and her family. We are also praying for our other friends who are fighting cancer. We hope you will too. We hope you are grateful for each new day you are given. We are.
We are humbled and overwhelmed by your donations to CURE in honor of the girls. So far, over $4,600 has been given in honor of Elena and Liv. Thank you for caring and for continuing to support us in so many ways! Thank you for making a difference in our lives every day! Even though September and National Childhood Awareness Month is coming to an end, we hope that like us, you will remember these children, their families, and the struggles they face everyday.
"Because of the Lord's great love we are not consumed, for His compassions never fail. They are new every morning, great is your faithfulness."