The Map

We are back in the hospital for another round of chemo. For those of you who have asked how many rounds/how often, I’ll try to explain. Or, you can just decode this map. 😉image

Ironically, the chemotherapy Mason is getting is actually called MAP therapy, an acronym for the drugs used for osteosarcoma.  Each Thursday starts a new week. Today started week 5 and is the 2nd week of 3 in a row. So, we are in the hospital for 4-5 days, home for 2-3, repeat, repeat.  Each cycle is 5 weeks and in that time, he has chemo on weeks 1, 4, and 5. The drugs he gets on week one are the hardest on him. This is why he needs 2 weeks of recovery in between. This is also the round that makes his white blood count dangerously low. There is constant nausea, vomiting, and fatigue with all of it. He generally either feels hungry, but doesn’t feel like eating anything or the thought of food makes him want to vomit. There have probably been 5 or 6 good days since chemo started. Today was actually one of them, until the high dose methotrexate was pumped into him. He and I spent a couple of hours in the pediatric craft room using all kinds of fun duct tape to make a Star Wars worthy satchel and light sabers. We also played hangman, talked Legos, giggled through a funny movie, and shared some chicken tenders for lunch. His favorite nurse was here today and their banter was hilarious. She actually cheered as he walked into the unit this morning because it has been so long since their schedules have meshed. Today almost felt like a normal day, minus the living in the hospital part. But, in the blink of an eye, my healthy, hilarious boy turned into a weak, pale, sick boy. His hair is almost completely gone and he’s taking more pills in a day than most elderly people. It’s so hard to put him through this. I want so badly to know if it’s working and worth the misery, but we won’t have new scans for roughly another month.

Today, he had another echocardiogram to make sure that the drugs haven’t decreased his heart function.  It still looks good. Thank God.  His oncologist also came in to take another look at his birthmark. From the beginning, there was question of his birthmark being a bone tumor indicator. It was initially ruled out, but now the birthmark seems to be changing, causing some new questions – as if there aren’t enough questions with his case. He’s literally had this mark since birth. It’s hard to think that we have missed something so crucial for over 9 years. It’s like God gave us a sign at birth and we totally missed it, so He threw some roofing tin in his path and said, “Maybe that’ll wake them up!” I NEVER wanted to be a nurse or do anything in the medical field. Now I feel like I am a nurse and wish I had the education to go along with the daily tasks. Maybe then I would have known enough to take my baby with the brown birthmark on his leg to specialist after specialist until I got some answers. But, that wasn’t in our plan. And, if I had known then that this path was in our plan, I’m not sure I could’ve made it to today.  This is definitely harder than the hard that I imagined. Never in a million years did I think this would be our struggle.

Pray for more good days than bad. Pray that the chemo is working. Pray for the unity of our family as it is so hard to live in separate places.

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5 thoughts on “The Map

  1. Praying you are not overcome or overwhelmed with Mason’s care, but overcome by hope, overwhelmed with the depth of Christ’s love for you and for your family, amazed at the strength and the power of the Holy Spirit, and thankful that our Heavenly Father is holding you all in His mighty hands.

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  2. Oh Amy!! I definitely am praying for Mason continually!! Catch myself thinking about you all so often. Wishing I could bear some of your pain and ease your minds.
    Sending positive vibes your way. I know God is with you on this and Mason will have better days ahead. 😊

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  3. Amy, we’ve never met and probably never will. I’ve walked a similar journey with a little boy I love. Please know I am praying for Mason (and for each of you!) as you walk this hard road. I’m so glad you’ve chosen to share your heart in this blog. It helps me know how to pray. Exodus 14:14 — “The Lord will fight for you; you need only to be still.”

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