Update on my son's bone tumor part 2

Wednesday, April 2, 2014
We went down to Primary Children's Hospital in SLC, Utah yesterday to see a pediatric, orthopedic oncologist for my son's noncancerous bone tumor. We found out a little more about my son's prognosis and his condition. You can read the entire history of his condition here and here and here.

Dr. Lor Randall believes that the compound the first doctor used to fill the cavity in my son's leg actually hampered the bone's ability to regrow. He also believes that this complicated the issue, so what started out as a nonossifying fibroma (a noncancerous tumor that causes a cavity in the bone) has now moved onto a bone cyst-which is bigger, harder to treat, and less likely to heal than a fibroma.

My son's cyst is also in a really bad spot, as the femur bears the biggest load. It is also in a bad spot within the femur (lucky us). Meaning the chances of a bone refracture are high.

The Dr. wasn't able to give us a firm prognosis. Rather, we have a best case/worse case scenario. Best case, when go in at 3 weeks for a x-ray, the bone will have shown measurable healing. We would continue with restrictions on his activity and wait for the bone to heal to the point where he can fully function again (once again, he wouldn't give us a firm time line but best case is around 3 months).

Worst case, the bone will not have shown any measurable healing. At which point, we're looking at an additional surgery to drill out the center of the bone and scrape out the cavity again. They may have to do this multiple times. It may take years for him to heal. The doctor thinks we have a 25% chance of this happening.

The only good news in all of this is that the Dr. has eased the restrictions back a little, so my son can put 50% of his weight on his leg instead of 0 weight. He also has a brace now to protect his leg. He's still stuck in indoor recess and not allowed to do anything besides walk  with crutches (crazy hard for my extremely active 8 YO son).

I do not like this doctor. He was explaining what had happened, using terms I didn't understand and being hard to pin down as to the timeline and chances of healing. I kept stopping him to ask for clarification. He was impatient to the point of being snappish before flat out telling me not to interrupt him again.

Because apparently it doesn't matter if I understand what's going on with my son. He knows best and we should just fall into line.

I was already feeling overwhelmed and upset and confused. Now I felt stupid and hurt and angry.

When the doctor finally finished talking, I stayed silent for a beat and then asked if I could talk now. At that point, he did apologize, saying that he was upset with my son's first doctor and took it out on me.

That didn't make me feel better.

Normally, I'd just go to another doctor, but there are only two orthopedic pediatric oncologists in Utah, and our insurance won't cover the other doctor. Humana is also giving us the run around--denying that things are covered. When we research it, we find out those things actually are covered and complain. Humana won't answer my emails and it's pointless to call because whoever you talk to is obviously trained to hedge and won't call you back. The only way to get them to listen is to go through my husband's company and our insurance agent--getting them to complain.

I firmly believe Humana does this on purpose. They don't pay for services they actually cover in hopes their patients won't ask questions. If the patient throws a bit enough fit, they'll give in. This saves them money because the majority of patients don't know what's actually covered and what isn't, or that they can even fight.

I would like to take this moment to thank Humana for taking an already extremely stressful situation and making it much worse. *sarcasm*
Emotionally, my son is about the same-I don't think he understood what the doctor was saying, and he's excited for his brace and the chance to put some weight on his leg. I'm back to being very stressed and emotional again (and just when I was starting to feel like myself after the first batch of bad news).

Adding to that stress is the fact that our home is a four level multilevel--you can't take more than ten steps in my house without going up and down stairs, and the two bathrooms are only on the topmost and bottom-most floors, rendering the wheelchair/crutches/walker useless (he hops one legged rather than having to wait for us to haul equipment after him everywhere).

I really want to sell our house and find one that fits our situation better, but we have some personal issues going on that make that difficult. And I don't know if I can deal with the stress of selling our house, finding a new house, moving, and building a new support system somewhere else (our nearest family is 1.5 hours away, so we rely a lot on our neighbors and friends).

Anyway, I could go on, but this post is already depressing enough as it is. So to end on a good note: I bought a new outfit! A new shirt, leggings, bag, and sparkly gold ballet flats! I love them!

5 comments:

  1. Oh my goodness, Amber, I wish I could give you a great big hug :-( It's just so much to have to deal with more and more bad news. And that doctor!! How dare he tell you to stop interrupting him?! I've been to a doctor before who wouldn't shut up long enough for me to get a question in, but at least I wasn't dealing with the serious situation you've got. Just keep trusting that God will take care of it all in the end ... somehow.

    PS - Yay for the new outfit! You look fab!

  1. My I think its time to call a lawyer!!!

  1. Sorry for all your stress and your poor son. That scene from The Incredibles is perfect for your situation. Hope things get better and love the outfit Amber.

  1. I am so sorry to hear about this stress you are enduring. There is nothing harder than the stress parents go through with sick or hurt children. My son had a bad break last summer, followed by surgeries....it felt like a hardship then, but your story makes it seem like a walk in the park. I pray you are in the best possible care now and that you get good news soon.

  1. This is terrible. It's too bad that you had to go through this. Having your son in that condition is stressful enough – but you had to dea with an arrogant doctor to boot. Anyway, I hope things are lot better now for you guys, especially for your son, and that insurance company got their act together. Take care!


    Sabrina Craig @ Medical Attorney NY

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