Clear Scans Again! ... But Another Bump In The Road

Over the past 2 weeks Edward has had his regular follow-up appointments with both his oncologist in New Brunswick and his orthopedic surgeon in Philadelphia.  The good news is that, once again, there is no evidence of disease...Edward remains NEDward!!!!  Hooray!!!

Other good news is that the osteopenia that I wrote about back in January also seems to have improved. Edward saw an endocrinologist in February and we increased the calcium and vitamin D supplements and based upon his latest x-rays that seems to have helped.

So, what's the "bump in the road"???  Well, it appears that there is a problem with the growth of the tibia in his right leg...yes, the tibia...the bone below the knee!  It is not keeping up with the left leg.  Compounding that is the fact that the fibula in his right leg (the smaller bone along side the tibia) appears to be growing normally.  So the lower part of his right leg is now beginning to bow, putting pressure on both his knee and ankle.  Also, the right tibia now appears to be considerably shorter than the left tibia.   This disparity in the growth was noticed back in September when he last saw Dr. Dormans (I even wrote about it then). However, at that time it was within acceptable limits and our expectation was that growth would continue and they would even out. Now we are not so sure.

What makes this particularly frustrating and worrisome is that nothing was supposed to happen in his lower legs.  All of the focus has been on the femurs because Edward lost one of the growth plates in his right femur when he had his surgery.  Growth issues with the tibia weren't even considered.

So, what now?  Well, Edward had an MRI this morning and we have another appointment with Dr. Dormans on the 28th to review the results and determine if the growth in the right tibia has just slowed for some reason, or if the growth has stopped completely due to damage to the growth plate(s).  Either way, it appears that Edward may need to have more surgery.  This time it would be on his lower legs to slow or stop the growth of the right fibula (to prevent it from bowing more) and the left tibia and fibula (to prevent dramatically different leg lengths).

It just doesn't ever seem to end, but I'm finding that this is true for most children who have had cancer. They endure the brutal chemotherapy and radiation treatments, the sickness and the multitude of side effects caused by them.  Then those that survive and beat the disease are very often left with a lifetime of medical problems, known as late effects, due to the toxicity of the treatments.  Edward's bone issues may be due to the chemotherapy or they may be a result of damage from the osteopenia or it may be something else entirely.  We may never know.  I'll update again once we know more.

Just please keep Edward in your prayers.

With love and hope for a cure (that doesn't result in more damage),
The Migliores

P.S. We also have another Hugs for Brady event coming up soon...the Twilight 5K and Kids Fun Run at South Brunswick High School on Saturday, May 3rd from 3pm-8pm.  Please help us raise money for pediatric cancer research to find more effective treatments that do less harm.  The Smiles for Edward Team is registered and looking for members.  To register or donate please visit: http://www.crowdrise.com/SmilesForEdward

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Comments

5 Replies

Amir Gilani
By The Gilani Family
We will continue to keep Edward in our prayers.
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Ourania Gargalidis and Family
By The Gargalidis Family
We continue to pray for you all~
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Claire Butera
By Claire Butera
Included Edward in my prayers this Easter Sunday. We hope the MRI shows growth in the tibia. Please let me know if we can help in any way.
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MiMi Olsson
By MiMi Olsson
Carol, you might find similar cases in the ped-onc-surv group in ACOR. Please keep us posted,,,hate that the Incredible Edward is facing more surgery but thrilled his is still Ed the NED! With Hope, MiMi
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Eileen Doran
By
Praising God for the good news that Edward remains No Evidence of Disease. Wonderful news! Grieving with you that Edward must continue to suffer the consequence of the cancer and treatment. I understand. Praying for FULL healing for Edward and my Grace and all our warriors. Sending all our love!
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