Thursday, September 1, 2011

Leg day




We have been waiting for this day for so long--Steven got his leg. I wish I could say that it all went super smoothly and we all did a dance of joy, but unfortunately, the day has come with some sad realizations as well.

I'll back up. We started off the day by stopping into the hospital to get Steven's labs done. Usually, this is done by a home health nurse, but she doesn't come until the afternoon, and I wanted results earlier, so we stopped in on our way to Shriners. It went well, but we cut the appointment close and were a little late and rushed. I suppose it didn't matter much, Shriners was busier than I'd ever seen.

By the time we finally got into our room, we were well on our way to missing the PT appointment altogether. I called up to PT and told them the situation, and the therapist was nice enough to come down to our room and work with Steven while the prosthetist made adjustments on the leg. They were working together to make it just right for Steven.

This sounds so ideal, and really it was, but unfortunately, Steven was so tired and hungry by this time, that he couldn't deal with all the poking and prodding. They were trying to get him to explain what bothered him and he just cried even harder. In the meantime, I got a call with Steven's lab results which confirmed that his hematocrit is low--25.4, almost low enough for a transfusion. (On the bright side, his ANC is up.)

At one point they were talking about the leg needing one more modification and deciding if should keep it a little longer to work on it. Steven had been so looking forward to this day, that they let him take it for the weekend and then I will bring it back on Tuesday when we are up for chemo.

The whole thing was frustrating, especially for Steven. I know there were physiological things going on, but also the psychological stuff was pretty heavy. He couldn't even articulate where his foot was bothering him, let alone why he couldn't stop the tears. As I was thinking about it as we drove home, I think that maybe it has to do with just how much work is still ahead. It isn't the sort of thing where he can magically walk now that he has a leg--in fact, he walks much slower with his leg on and he still needs crutches. It is going to take so much patience and hard work.

I am confident that he is strong enough to do it. And as far as patience goes--well, you may remember my story of the first time he learned to walk. This time it is more than balance that he has to gain before he will walk again. And this will require time and diligence--there is no way around that. Maybe patience is one of the life lessons that cancer will teach him.

As we were waiting for the prosthetist to make adjustments to the leg, I was reading a magazine and I showed Steven an article about cakes. He was starving and he thought it was the most beautiful picture in the world. I had Rob pick a cake up for him on his way home from work. He loved the cake and our little party (we even sang "Happy leg day to you!") cheered him up. Like every other aspect of this journey, we will take this walking thing one day and one step at a time--somehow we'll get through it.




13 comments:

  1. Good luck Steven!!! We know you can do this. I love that you got a cake, what a great way to celebrate!

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  2. What sweet sweet parents you are!!! I am amazed at your patience and ability to just keep swimming:) He will not only remember this journey and all that he endured, but he will also remember the amazing ways you brought normalcy and even celebration to these circumstances which are anything but normal. You inspire me!!!

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  3. What a big day. Sorry that it turned out the way it did. Hopefully, things will go smoothly for you guys now that he has a leg-maybe it will motivate him:) Hang in there!

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  4. It's hard to even imagine what it would feel like to be Steven. I am sure he was flooded with all sorts of emotions. You guys have packed a ton of life changing things into this year! I can't wait for chemo to end for you guys!

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  5. We were so excited all day about Steven's leg. The kids kept asking at dinner if they could see a picture, I will show them when they get home from school today. It is such an emotional time. I wonder if some of it is also the "post-long-anticipated-day" blues. It's been a long road already. We are cheering for all of you and praying for you on this physical and spiritual marathon. We love you guys.

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  6. I'm crying now too. I'm so proud of Steven (and all of you). This is such a challenging thing, but you doing it. Thanks, all of you, for your example of strength and perseverance. Happy leg day Steven! Eventually you'll be running the bases like a pro!

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  7. Good luck!!! How exciting, I am sure that sooner than you think he will be running and jumping- steven is one determined kid and we are so inspired by him. Happy Leg Day!!!

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  8. Congratulations on the leg! The cake is such a fun idea! Hang in there. . . I think you've got the right idea. One step at a time :-)

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  9. Yesterday I saw a man wearing shorts in the airport. I never would have guessed he had a prosthetic leg if he had not been wearing shorts. He walked as well as anyone in the entire airport. In not so long I suspect Steven will be walking like him.

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  10. Sonja - Wow. What a day for all of you. I'm so glad Steven could cry out all those feelings. I can't even imagine what a shock this whole experience has been for his body and emotions. But at the end of a painful and difficult day, he could smile that incredible smile of his, once again, at the sight of a cake that welcomed his new leg. You and Rob never cease to amaze me. Love, Chris

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  11. We are all cheering and praying so hard for you Steven and for your brave family who we love so much! Congratulations on your new leg and we believe that in no time at all you will be leaving us in the dust in a foot race!

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  12. I just watched a show where a man with 2 prosthetic legs climbed Mount Everest! There is nothing that he can't do now... watch out world Steven is coming! :)

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  13. He is a tough kid! Love the cake and song idea! So cute! It looks like it helped! You are a great mom!

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