Madeline went back to school in May and finished out her sophomore year with her friends. She took her finals and her AP tests and used the scary-it-is-going-to-break-any-minute elevator every day. She is feeling good and had her port removed on Monday. She is officially NED (no evidence of disease) but will continue to be monitored closely by her oncologists and the orthopedic surgeon that did her limb-salvage surgery. Her leg and knee are doing well. She has a great range of motion with her knee, continues to work with a physical therapist, and her incision is finally starting to heal up now that her blood counts are back in a normal range.
The issue is that there was a complication with her surgery that is affecting her foot. Immediately after the surgery, she could wiggle her toes but then her foot and ankle started to swell up and she lost feeling and movement in her ankle and foot. Her team of doctors and nurses were well aware of the issue but said that they weren't too worried due to the nature of the surgery. However, the feeling and movement have not come back, and her Achilles tendon has contracted to a point where she can't put her foot down at all, not even to "walk" on her tiptoe because her ankle is so contorted.
We met with a team (picture 8 doctors in a VERY small room) at Scottish Rite a couple of weeks ago and they laid out three options. They feel the issue will not be able to be corrected with physical therapy although the neurologist feels strongly that we need to wait at least three more months to see if she regains any feeling or movement in her ankle because periphery nerves DO regenerate but at a very, very slow rate. There are two surgical options (dependent on if she regains feeling or not) that they discussed both with some serious mobility and life implications, and also an above-knee amputation.
We will go back and meet with the Scottish Rite team in early September to discuss the options and make a decision. In the meantime, they will do a nerve study at the end of August and a vascular study in July. Both should provide some more information about which option would be best. The hardest part is waiting - especially as a teacher who is "off" in the summer and thinking about how no one wants her missing more school next year. The doctors were happy to send us off saying, "Go enjoy your summer" which is a great thing but "Go enjoy your summer on crutches" doesn't really have the same ring to it! Especially when you have been on crutches since February and no matter the choice you make, you will be on crutches until at least December!
I have to be honest and say I am really struggling with all of this and I am sure she is too. Ultimately it is Madeline's decision but it really feels unfair after all that she has been through. She is tough and I admire her strength so much but really - what choice does she have? She has been able to enjoy swimming in our pool this summer (one good thing about not having surgery now) and at least it is her left leg, so she can continue to practice driving - she will turn 16 in August. We appreciate all of the people who continue to pray for our family and check in with us. I had a friend apologize for asking about Madeline and I have to say the opposite is true - thank you for asking about her!!
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