Sunday, October 2, 2016

6 Months

It's hard to believe, but it's been six months since Ellie received the hard diagnosis of Leukemia.

The past six months have been a blur. They have gone a normal pace. I suppose. Honestly, looking back they kind of feel like an eternity, especially because I cannot really remember what our life was like before April 2, 2016. 

You often hear that cancer so many different ways. It's true. Even though Ellie's prognosis is great, and I realize what a huge blessing that is, I still feel robbed. Robbed of time, robbed of fun, joy, health (duh), blissful ignorance. So many things. 

A couple of weeks ago, one of Ellie's nurses asked me a very pointed question. "What has been the hardest part about all of this?" Two things have been far more difficult than we anticipated. 

1. Explaining and educating to ourselves and to others. This is one of the main reasons why I continue to write this blog. Before Ellie's diagnosis, I was ignorant about all cancers, but specifically the world of pediatric cancer and Leukemia. Everyone knows that October is Breast Cancer Awareness Month, but I had no idea that September is Childhood Cancer Awareness Month. I had no clue how common childhood cancer is, nor that it could arrive in so many different ways. I did not know how far "cure" advances had come, but even though the cancer may be gone, that is just the beginning of the battle. Ellie's nurse immediately got it. "Getting rid of the cancer is only 10% of the battle. Making sure it never comes back is the other 90%." (Please note, this is only specific to Ellie's cancer, ALL. There are a myriad of other pediatric cancers that have completely different courses and outcomes.)  Yes! That was it! She immediately put into words what I had been trying to formulate for so long. When Ellie was deemed cancer free in the beginning of May, that was great news! But, it was also expected news. We were, and still are, so grateful that the cancer was gone, but we also knew that there was still a very long road ahead of Ellie and our family. That brings me to...

2. Eva and Nora. Ellie's diagnosis has been so much harder on them than I could have ever anticipated. Cancer really does affect the entire family. I would guess that it has hit them the hardest, because they are the closest to it, but yet do not have a firm understanding of it. 

Eva lives in her mind where everything is black and white. Yet, for the past six months, everything concerning Ellie has been gray. 
"Ellie is sick and in the hospital.
Ellie has cancer. Leukemia is when your blood is really sick.
You can't "catch" anything from Ellie. You cannot get sick the way she is.
Ellis is home from the hospital. But, we have to be very careful around Ellie.
The cancer is gone! But, you still have to be careful around Ellie.
Ellie is getting stronger, but she is still at the hospital. Constantly.
She has to get more chemo. It is going to make her fragile.
Ellie got really sick again. She is in the hospital. The cancer is not back. 
She has to get a lot more blood. Her body is not working properly on its own.
The chemo is making her sick, but it is keeping the cancer from coming back."

Writing that is exhausting. I cannot imagine what it's like for Eva to try and process it.

All Nora really knows is that Ellie has been really sick and is slowly getting better. Also, that the chemo and steroids make her crabby. We have explained everything above to her too, and I am sure that it is extremely confusing for her to try to grasp. 

But through all of this, I am gone. A lot. They both have had a very difficult time with the separation and lack of schedule. And, when I'm gone, I am with Ellie. The balance of time is severely in Ellie's favor, and it has not gone unnoticed. 

There have been so many other difficult aspects to this process, but they were, for the most part, expected. These two issues were the biggest surprise.

 So, where does that leave us? Six months into this, how are we? 

We are ok. This sounds like such a bland, simple answer, but it seems the most appropriate. We are not doing great, but neither are we terrible. There are days where things seem normal, and others where we want to wallow. Most days, we are tired and we are overwhelmed. 

This too shall pass. That has been our mantra. We know that there is an end to all of this, even if right now it seems very far away. We are not alone. We have been so incredibly blessed to have so many people help us along the way. Family, friends, strangers...SO MANY of you have risen to the challenge. If you have said a prayer, sent an encouraging text, brought a meal, donated money, watched our children, visited in the hospital, or done one of many other creative things to help our family, THANK YOU! In spite of this difficult time, there have been so many cool things that have happened to our family. It is so easy to focus on the negatives, and honestly, some days we do. But, we are increasingly trying to focus on the positives. It seems to be balancing out, and hopefully one day, all of the blessings will outshine everything else. 

In the meantime, if you ask us how we are doing? We're ok. And I am ok with that answer for now. 

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