Ella has multiple osteochondromis. It is the same bone disorder that her daddy, Darrell has. A disorder that he was told would never be able to be passed on to his kids. A year ago this past August we thought this might be a possibility because she wasn't walking at daycare well and when taken to the ER we found one tumor. We were told it is quite common to have one tumor but it wasn't worrisome and come back if it seems to bother her. Fast forward to her 5 year check up. She only grew a 1/4 of an inch. They like to see at least 2 inches of growth a year. So her dr ordered an age scan on her and a referral to shriners. The age scan showed that she is fine in that respect but she had what we were told was 'an old injury'. Today at Shriners we told all this to them and they decided to do some X-rays including of her wrist. They x-rayed both of her legs and her left wrist. She has a total of 5 tumors on her legs when a little over a year ago she only had 1. There is no doubt in this drs mind that she has the same bone disorder as her dr. This is similar to cancer. They are tumors but they will never spread altho the tumors can and most likely will grow they will never spread and will never be a concern like that for her and although there is a small chance that the tumors will turn into cancer the risk is small.
The concern for her at this point is pain. How much pain will this put her in? Well those that know Ella know that she doesn't feel pain. A year ago she had an EMG. When they put the probes on her to shock her muscles she didn't flinch. When they put the needle in to shock her, again she did not feel pain. When they took the needle out she freaked out about the pin drop of blood on her leg. We always thought this was a curse. Today after getting this diagnosis I think her not feeling pain is a blessing! This bone disorder causes her dad insurmountable pain. Perhaps we can spare her that much! She will need surgery. When we do not know. We just know that with this disorder comes surgery. A lot of surgery. Usually when they get to be bothersome. The tricky party with her is we are unsure how we will know when she is at the point that she cannot handle it any longer. This is something we need to address.
In addition to all this when they did the X-rays the tumors look like shadows next to the bone. This is what was looking like an old injury. The dr at shriners said it is absolutely not an old injury. The X-ray of her wrist is white and looks to be actual cancer not a tumor.
The next step is a second opinion from Darrell's ortho dr who we trust with our life on January 3. After that we will determine what the next step will be. If it is cancer on her wrist the next step will most likely be Pittsburgh to talk to their oncology department. If it is not cancer we will just try to figure out a game plan for knowing when these tumors should be removed.
She's litte, she's cute. She's strong....she is a fighter!!! Here's to hoping she can pull her resources to fight this with everything she has!!! Please pray if thats your thing, or positive thoughts...whatever it is that you do so we can figure out a game plan and do whats best for her!
The concern for her at this point is pain. How much pain will this put her in? Well those that know Ella know that she doesn't feel pain. A year ago she had an EMG. When they put the probes on her to shock her muscles she didn't flinch. When they put the needle in to shock her, again she did not feel pain. When they took the needle out she freaked out about the pin drop of blood on her leg. We always thought this was a curse. Today after getting this diagnosis I think her not feeling pain is a blessing! This bone disorder causes her dad insurmountable pain. Perhaps we can spare her that much! She will need surgery. When we do not know. We just know that with this disorder comes surgery. A lot of surgery. Usually when they get to be bothersome. The tricky party with her is we are unsure how we will know when she is at the point that she cannot handle it any longer. This is something we need to address.
In addition to all this when they did the X-rays the tumors look like shadows next to the bone. This is what was looking like an old injury. The dr at shriners said it is absolutely not an old injury. The X-ray of her wrist is white and looks to be actual cancer not a tumor.
The next step is a second opinion from Darrell's ortho dr who we trust with our life on January 3. After that we will determine what the next step will be. If it is cancer on her wrist the next step will most likely be Pittsburgh to talk to their oncology department. If it is not cancer we will just try to figure out a game plan for knowing when these tumors should be removed.
She's litte, she's cute. She's strong....she is a fighter!!! Here's to hoping she can pull her resources to fight this with everything she has!!! Please pray if thats your thing, or positive thoughts...whatever it is that you do so we can figure out a game plan and do whats best for her!
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