I have so many words I need to get out. As always, I have no desire to publish negativity or bad news. And, I’m sorry.  But, it’s harder to see the good each day. Anger is consuming me as hard as I try to escape it. And so much sadness.

It’s a holiday weekend and we are stuck. We can’t enjoy time with friends or family. We aren’t allowed to travel for fear of getting too far from the only place who knows how to care for Mason. It’s sobering to realize that any old hospital won’t due if our nine-year-old runs even the slightest fever. And, his little body is low on every imaginable nutrient and blood component, so being around people is a danger to him. We’ve found ourselves weighing his emotional well-being with his physical well-being. We know that being around loved ones would be so, so good for his spirit. But, we also know that making a decision that puts him at risk would be one we could never forgive ourselves for. We had so hoped to be able to spend a couple of days in Nebraska and it just isn’t going to be possible.

This is our time “off” – no chemo, no hospital stays. And, yet we spent the entire day at the cancer center yesterday getting blood and nutrients. There hasn’t been even a half day that has gone by that we haven’t had to have medical advice or care from either home health or oncology. It completely wears you out. So many things to remember and worry about. So many decisions that have to be made with no hope of a positive outcome, just hope for a lesser of two evils. I’ve pretty much lost all desire to take care of our home, if it wasn’t necessary health-wise for Mason, I might not. Just monitoring all of the medicine is a chore on its own.

A couple of days ago, Mason mentioned that his ears have been ringing off and on. His oncologist told us yesterday that this was a sign of hearing loss from the Cisplatin (chemo) he’s been getting. She confirmed that all hearing loss that happens during chemo will be permanent. Today, he was taking his temperature for what must be the millionth time since January, the thermometer beeped as it finished and he just sat there watching TV. Matt and I were in another room and could both hear it. We tried again and nothing. He can’t hear the beeps. I cried as I watched him completely clueless the second time. That moment will forever be etched into my brain.

Hearing loss is just one of an entire list of permanent side effects to chemo. But, it’s our only choice. And, even worse, many cancer patients end up with another cancer from the chemo. Chemo is given to a child to kill cancer and ends up causing it. It’s just horrifying to comprehend. Several moms in my online support group posted just this week about their child being in remission from osteosarcoma and just finding out they now have a second cancer. How do you even handle news like that?

I never appreciated what we had before cancer crashed into our family. I mourn what our lives used to be. I get angry when people complain about almost everything. I get jealous when I see a little boy with dirt and grass stains on his baseball pants. I get jealous when I see kids with sun-kissed skin. I am tired of being looked at with sad eyes. I’m terrified of losing friendships because I can no longer participate in life and do all of the taking and no giving back. I’m terrified that we’ve become “that family” that no one knows how to talk to anymore. I’m all out of things to do to make it better.  All I know to do is pray.


13 thoughts on “Stuck

  1. I do not know your family. I grew up in the same town of Cindy Stedman and saw her post so I read your story. I am so sorry for this journey you are on but I pray that God will give you the strength to go through each day and encourage you to just focus on each day. Look for the blessings that God still has for your family inspite of the cancer. Strength for the day; may you feel the power and presence of the Holy Spirit all around you. Sharon Carman


  2. Amy please know that so many people are praying for you. Very few of us know exactly how difficult it is to care for someone with so many needs. Many people really do want to help so don’t be afraid to ask. Thank for continuing to post, so that we know what prayers you need and are reminded to be thankful for all the craziness of normal days.


  3. Never apologize for expressing what you are going through my friend. My heart aches for all of you. Prayers and petitions going up for you all. There has been a time or two that I’ve actually internally shook my fist up to God wondering why, Father, why. We have to trust Him in all things. He can handle our frustration, anger, disappointment. He knows the anguish and hurt you are going through. Know there is love and many, many prayers for you all. Our hearts hurt for your family and you are always in our thoughts and our prayers.


  4. I am so sorry for the hell that is all of your lives right now. I know we are not terribly close, but always consider me a friend. I continue to pray that a huge fat miracle happens. Mason needs one. You all need one.


  5. I so deeply appreciate your honesty and my heart aches for your family. You are amazing and the love your family shares in life’s most difficult circumstances is beautiful. Much love to you all.


  6. AGAIN!!! Amy, I am so sorry for what you all are going through!! I will NEVER get tired of your posts. Good or bad, I pray with all my heart that God heals Mason and relieves you all of the worry and pain you are going through. If, there is one thing I can do to make your life a lil easier right now, please tell me what it is. I won’t hesitate a minute in doing it. God Bless Mason and his family for they are at your Mercy!!


  7. Amy…I saw your post thru Cindy Stedman and want you to know that your are not alone. Praying for your family, with the assurance that God does answer prayer. Cancer effects not just the person but the lives of all involved. My heart goes out to you.


  8. My thoughts and prayers are with you and your family. I pray that God brings healing and comfort to Mason and to your family.


  9. Amy, I had Matt as a teacher and 9th grade basketball coach. I want to express to you both how entirely sorry I am that you are living this nightmare. Please know that I am praying for Mason and your family that healing can take place. My daughter and I will say a bedtime prayer of strength and comfort for you all.

    Keep on keeping on. It sounds like you have a great support system.

    Mackenzie (Schwartz) Smith


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