Today

I haven’t written in forever.  Part of me just wants to grab hold of the life we’ve been given back and go with it as if the reason for this blog was never a part of our world.  I never used to blog when life happened.  It’s strange when you are constantly balancing on the line between a personal, private life and knowing people need to know details because they genuinely care and want to pray.  I’m not going to lie though, each time I sit down to blog it serves as a therapy for me to stop the words from being trapped in my head swirling around and around.  One thing that hasn’t changed since the very beginning is the fact that I have many, many more words than my husband.

Today was a hard day so blog therapy is a necessity. I got a  phone call from Mason’s school while I was on the phone with the oncology team at KU.  Both phone calls were bad news.  We’ve had much worse news in the past, so I’m trying to keep it in perspective.  But, today kind of kicked my butt.

dont-have-a-bad-day

I need to backtrack a little so that this all makes sense because it’s been so long since I updated.  The pathology report finally came back from NYC, inconclusive but “favoring” Fibrous Dysplasia, meaning they believe Mason never had cancer.  We have since learned that Low Grade Osteosarcoma and Fibrous Dysplasia look very similar in pathology and misdiagnosing one for the other is a  very easy thing to do.  In the end, we have two different opinions and our doctors at KU do not agree with our doctors at Memorial Sloan Kettering.  Besides the fact that all of these surgeries and chemo would have been completely unnecessary if it was Fibrous Dysplasia (a whole can of worms that is emotionally hard to process), the treatment for these two diseases are drastically different.  Because we have to know how to proceed and make the best decisions moving forward for Mason, we opted to move forward with seeking a third opinion over a month ago.  We signed  consent for Mason’s  tumor slides to be sent to Mayo Clinic in Minnesota and have been waiting yet again.

Today’s phone call with oncology was a return phone call because I had finally decided to check in to see if there was any update at all.  This phone call revealed that not only does Mayo not have Mason’s slides over a month later, but they are still sitting in NYC.  Our nurse practitioner vowed to call them every single day until they mail the slides back so that they can then turn around and send them back out again.  While I’m grateful for the diligence, it should have happened a month ago.  So, we wait longer and become more frustrated.  While I had them on the phone I decided to ask about vaccinations for Mason because he’s overdue on one that couldn’t be introduced during chemo.  I found out that every single vaccination Mason has ever gotten since BIRTH is void.  The chemo (which we now know was unnecessary) killed all of it making him no longer immune.  Once he is 6 months off of chemo, he gets to start all over with every single shot he’s had in 10 years.  Again, there has been much worse news and I hate that I am complaining and so frustrated by this.  But, he’s been through SO MUCH already!

I hung up with oncology to answer a phone call from Mason’s school.  He fell at school again today.  He was loudly crying in the background.  My heart skipped a beat and all I could say was, “Oh.  Shit.  Oh.  Shit.”  So mature, right?  I may never handle emergencies with grace.  I think each emergency now brings up all of the trauma from the previous emergencies and I see bits and pieces of the past as I’m trying to process.  It’s  a horrible state of mind.

Just recently Mason was released to full weight bearing.  This meant that he didn’t need crutches, but he should use them for balance until he got used to balancing without.  It also meant that he was able to graduate to one crutch and just yesterday, his physical therapist mentioned that a cane would actually be the perfect next step in helping him gain a normal walking pattern.  I put out a plea on Facebook just yesterday asking if anyone had a cane we could borrow – temporarily.  And do you know that so many people came through?  One of Mason’s friends brought a cane to school today and a  friend of  mine just so happens to have a father who is so talented and giving that he carves creations to be used as canes and gifts them to people who need them.  I didn’t even know that a cane could be a piece of themed art like a birthday cake, but so much more useful!  And, again I was reminded of God placing people around us that happily help in times of need.

But, today he fell.  Today Matt and I rushed Mason to KU yet again for X-rays praying it would be nothing even though he cried off and on all the way there.  Today Mason fractured his tibia near his ankle.  Of all the bones he could fracture, his tibia.  He barely has any tibia left, just a top and a bottom and he fractured it.  So much for being ready for that cane.  He is back to no weight bearing, ice, and elevation to prevent massive swelling.  We are so careful.  He is so careful.  But, he’s also 10.  And, he’s  also related to his parents.  We do everything we can to prevent setbacks like this and they still happen.  It sounds silly, but when I close my eyes and picture him running in my head, I always cry.  I miss it that much and I’m just his mom.   I can’t even imagine how much he misses it.

All of this being said, it could be so much worse.  I was connected with another cancer parent last week and it was just heart-breaking.  This dad has a daughter who has the same diagnosis (osteosarcoma -diagnosis #1) as Mason.  She is being treated in the same hospital by the same doctors and yet her story is very different.  Her cancer keeps spreading throughout her body and they recently found out it is now in her spinal cord.  She is 14 and has been living in a hospital most of her time for over a year.  The pain and sorrow in this man’s voice was so heavy and the love he has for his daughter is so deep.  And he’s starting to believe he should hope that God will take his little girl so that she doesn’t have to suffer.  I cried with this man over the phone and I ended the conversation feeling so very grateful for what I thought was a difficult journey we have been on.  I was reminded how lucky we are and how hard it would be if we were still taking turns living in a hospital.  I sat down today and composed an email to this man giving him every single resource I’ve learned about along the way and vowed to pray for his family as they make difficult decisions with cancer parent brains that make it very hard to focus.  Please join me in praying for this family too, my reminder to be grateful.  Someone else’s today can always be harder than yours.

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7 thoughts on “Today

  1. Hang in there. We are all praying for him and your family. I know there is little comfort in those words, but just know that you are not alone. There are over 600 people following this blog and that alone tells you that you are not alone. There is power in prayer. I know they’ll find an answer and you’ll get your life back. It may be a different life but it will be one worth celebrating. ❤️🙏🏻 I cannot imagine having a sick child, I don’t know how to help except to encourage you ❤️

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  2. sitting here with tears running down my face. Praying for Mason. Praying for you. Praying for the 14 year old girl. All my little problems are nothing. Thanks for the kick in the rear! Love you!

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  3. Oh Sweet Mama. My heart breaks for you. And for that poor daddy and his little girl. Yes, perspective says that at least you aren’t facing the same harrowing decisions that he is but the fact remains that someone else’s pain does not lessen yours. It is also a true that “little things” (although your description of “not nearly as bad as the things we’ve faced” is an incredibly bad day for those of us with the luxury of not having a sick child) but while we access deep, deep strength to face the “major things”, we are exhausted, depleted and unprepared for the smaller emergencies and crisis that arise. Don’t beat yourself up for being “immature”, sometimes “Oh, shit” is the only appropriate response. I’m so sorry that life is so very hard. We are praying for you. Much love and grace to each of you.

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  4. Amy, you and your family will continue to remain in our prayers and our thoughts. My heart breaks for you and for the dad and his little girl. I can’t even imagine the pain you guys are going through. Mason is a special boy and he is lucky to have the wonderful parents and sister that he has. God loves you and will continue to bless each one of you. We love you all!

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  5. Continuing to pray for your family and praying today for this new family, too. Today I’m asking him to fill each of you with courage and strength and boldness in the midst of this storm. God is greater than even this. Tell Mason we send greetings from Atlanta. ❤

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  6. Amy, I don’t know you, but I’m cheering for your family.

    My heart hurts for you, cheers for Mason and winces with each new bit of news you’ve gotten regarding his journey. When we meet in Heaven, I want to hug you so tight, sister.

    I wept when you shared the story of that sweet girl and her heartbroken daddy. You have such a unique perspective of grace and frustration to share.

    Thank you for being so raw and open with so many strangers and friends alike.

    Keep being your little boy’s fiercest advocate. Your tenacity is amazing. Whatever encouragement we can give you, please let us know.

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