Overdue Update

I know an update is overdue when I find myself saying the same things repeatedly. I last wrote the day after surgery which has now been over 3 weeks ago. Each day since surgery has gotten increasingly easier. But, not before reaching a whole new level of exhaustion. For the first time ever, I didn’t want to leave the hospital because even just going to the bathroom required 3 adults. I actually asked if a nurse could come home with us. They thought I was joking. Thankfully, my mom was willing and able to come and help. It didn’t hurt that she’s a great cook and recently retired RN of 35 years. And, she knows how to handle me when exhaustion and worry have brought me to tears. 24-hour care and pain management is just plain exhausting. Seeing Mason in pain and frustrated was heart breaking. But, we’ve come so far. He no longer needs pain medicine and really only hurts during physical therapy (which is mom or dad doing specific exercises with him twice a day). At first it was all he could do to wiggle his toes. Now he can flex his ankle and lift his leg on his own. One set of stitches is supposed to come out in the morning and the other set will dissolve. He has two scars from his knee to his ankle. He has at least 3 more weeks of bearing no weight on his right leg. He uses crutches for short distances – like across a room – and a wheelchair for everything else. It will take a while for his bone to fuse together and get thicker.

Here is the X-ray of his new leg. It’s pretty easy to see where the tibia has been removed.  If you look closely at the top and bottom, you can see the cut ends of the fibula.  He only has the very top and bottom still in place for the muscles to attach.  In the middle, there are 3 stripes. The first one from left to right is the carbon fiber plate and the next two are his fibula, folded in half, then cut and stuffed into the inside of the remaining ends of his tibia.  This surgery was a long 5 hours, but so far both surgeons are happy with the results.

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We’ve been in the hospital for most of the past 7 weeks with 1-3 day breaks here and there. We are supposed to get to come home for TWO WHOLE WEEKS tomorrow so that’s exciting. Now that summer is here, Matt is able to share nights at the hospital with me and I’ve been able to work a couple of days a week. It’s been good for all of us. I’m more refreshed after a day or two away. We each get to spend one on one time with both of the kids. But, it’s hard too. The first time I left Matt and Mason at the hospital and came home, I bawled. Mason and I have become so close that it just killed me to leave him. One positive outcome of cancer is that I know my son so much better than I ever did before. We definitely have a stronger bond now. It’s nice spending time with each of the kids separately. But, it totally stinks that Matt and I end up only seeing each other on the trade-offs. I’m grateful we can be a great team, but there is nothing more special right now than all four of us being under the same roof.

Besides exhaustion, the other reason I have not wanted to write is that we have continued to get bad news. It’s so hard for me to put bad news into words. When written they always become more true.

Chemo is not working as his doctors had hoped. At the time of surgery, 90% necrosis was expected and pathology only showed 20-30%. In 2 months, his primary tumor (tibia) had almost tripled in size. All of his tumors have become more aggressive. Even though biologically they still test out as low grade, they are, by all accounts, performing as high grade. He has stage 4 osteosarcoma. His oncologist said it’s more reasonable to say “when” the cancer metastasizes to his lungs than “if” because 90% of osteosarcoma patients end up with lung mets. He also told us that some people end up having to do 3 or 4 consecutive years of chemo before being in full remission. I honestly can’t even go there. We’ve been doing chemo for 14 weeks and it feels like an eternity.

The next surgery on his femur needs to happen as soon as possible because the tumors are so aggressive. But, we have to wait until his prosthetic is completed and shipped from the UK. We don’t know all of the details of this surgery yet. Today we had to complete another hour of X-rays because his surgeon has changed his mind on what would be best for Mason.

There are so many unknowns still. But, I can honestly say that I feel at peace with the decisions we’ve made so far as well as trusting that God’s plan is far greater than ours. We have to stay the course, continue advocating for our son, and remain positive.

Distractions, great people, and Legos have gotten us through a lot. THANK YOU to all of the people who have sent Legos and visited. Mason is so grateful and so are we.

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We actually got to be home on Memorial Day and enjoyed some family time.

imageKeep praying.

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5 thoughts on “Overdue Update

  1. Can’t even begin to imagine what a difficult exhausting time the last few months have been for Amy & Matt. I feel like you must be the strongest amazing parents on the planet and to continue to trust God with what the future will be for Mason.

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  2. Psalm 34:17-18 “The righteous cry out, and the Lord hears them; he delivers them from all their troubles. The Lord is close to the brokenhearted and saves those who are crushed in spirit.”

    Praying that God continues to hold you all in His loving arms, that you feel His presence and His strength when you have none and that His peace will wash over you in times of distress. My words fail and I am sorry, my friend, but know that you are all in my prayers and my thoughts.

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  3. Still praying for you all. It’s unreal how much you guys have gone through already & to see God’s light shining through you more powerful than ever is such an amazing testimony. Lots of love sent through the miles💞

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  4. Wow, I’m tired just reading what all you have been through. I’m glad to hear that first surgery went well & recovery is coming along. How cute are you guys in your Memorial outfits! Hope you get to enjoy two weeks at home all 4 of you under the same roof. I’m glad you have the peace of God to sustain you & waiting on Him to surprise us all with His plan! Keep the Faith girl. Still praying.

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  5. Thank you for sharing all of this information. Just know that you all are loved and prayed for. Keep me on “speed dial ” for ANYTHING, OK? (Now that we are neighbors I can be available really fast and anytime!). I love the Memorial Day picture! Too cute!
    With love and prayers, Becky

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