I kinda feel like the energizer bunny, but without the energy.
The past 3 months have been quite exhausting to say the least. Between all the parties, get- togethers, school programs,
surgeries (I'll get to that), holiday gatherings, and general child rearing, Corey and I have been nearly out of our minds a time or two with delirium. Unfortunately, delirium in this household is not uncommon, and though it is not welcome, we understand it well and can accommodate it's invasion, however long it may be. But we were blessed during the holidays to be able to spend time together, as a family, enjoying our children's experiences, excitement and LOVE for all things Christmas. I went a little overboard this year with our indoor decorations, and even began singing them carols in October. But, when Christmas came, they were prepared! And following a very scary couple of months with Katie, by Christmas Day there was a sparkle in the air, a thrill, a light that was brighter than we could have ever hoped that made every second of our holidays so special this year.
And this is how the nightmare began......
Katie returned from her trip to California in mid August, and right around the time school started I noticed a bump just above her left temple. It looked similar to a calcium deposit she had as an infant, which was in close proximity to the location of the one we noticed now. I was told when she was a baby that the deposit would disappear as it grew with her skull. I thought it had, as I hadn't seen it in nearly 14 years...so I called to make an appointment for Katie to see the doctor. In my attempts to find out how long the bump was present, because all Katie could tell me was that it showed up one day, I called her step-mom who is a beautician and did Katie's hair just a day before she left California. She didn't see it when she did Katie's hair. Kinda made me worry at this point.
We finally got into the doctor for the exam in mid - October. She told us that it was probably another calcium deposit, much like the one she had as a baby, but probably unrelated to the one she had as a baby. Because she wasn't 100% sure of this, she referred us to an ENT to consult on it and possibly have it removed. That was scheduled for Mid November. To make all matters worse, after Katie arrived home from California she began having these horrible headaches. Over the weeks her headaches became so bad that they were making her sick in the morning to the point that she couldn't function. She had now missed 4 days of school in two weeks. I couldn't let her suffer like this anymore, so we went back to the doctor. Because of the headaches, and the appearance of the bump, the doc decided to send her in for a CT. We saw the doc on Friday, November 4 and went for the CT on Monday. This was still nearly two weeks bef
ore we were scheduled to see the surgeon. The CT was done that early Monday morning. But, since Katie's doctor was not in that day we were told that her nurse would call us the next day sometime with the results. At 7:20 the next morning, I saw the doctor's office number on the caller ID...Got a little nervous at this early morning call. It was the doctor herself. She called to say that The bump on Katie head was not a tumor (which, because of the headaches became a concern), but that she has tumorous lesions on her skull. The Radiologist diagnosed Katie with Eosinophillic Granulomas. It was good that we still had that appointment scheduled with the surgeon. But, by the next day, the surgeon's office had called us to say that that Katie's case, according to the results of her scan and diagnosis by the Radiologist, was too advanced for them and that she needed to go to Portland for her care at this point. Naturally, freak out set in at maximum levels.
After telling Corey the results of the call from the doctor, and sharing it with his mother as well, we were like a research team, working together investigating every avenue of this disease. We found that it is a fairly rare disease, and though most of the time it occurs in the lungs, having it on the bone could be disastrous if it made it to the bone marrow. This disease, which just a few years ago was automatically diagnosed as bone cancer, could turn into a cancer of sorts, if not treated appropriately. What?!? How do you tell your child that she might have cancer? How do you prepare her for the possibility of the things she might have to endure? I'll tell you how, because we had to.
We sat her down and explained to her the disease that she was diagnosed with. We told her that some people get cancer from it, and some don't. Nearly everyone would
have to be treated for this, but some longer than others. She might lose her hair. She might miss some school. She might have to have Chemotherapy. We PREPARED her for the worst, but armed her with knowledge so that she could work for and hope for the best. That's what parents do. We inform, reassure, support and we love.
Our appointment with the surgeon at OHSU finally came on December 1st. Corey, Katie and I went in prepared for a long day of tests and exams. We got there and they had no idea why we were there. That's right...no paperwork whatsoever. In fact, when the doctor came in the room, he said "So, can you tell me why you're here, Katie?" ARE YOU KIDDING ME?? I suffer from high blood pressure, and the surge of the blood to my face had to be painfully obvious. After catching my breath, I told him. He ordered immediate films from the hospital here in Hood River and all notes from her doctor's office. It took a while, but they got there. Before they got there, though, he still went on with the exam. He poked, prodded and said "It feels like a dermoid cyst." Naturally, I though "huh?" Since we had not seen the CT, he looked it over with us and pointed it out again. "Looks like that on here, too." "And, as far as the Eosinophillic Granulomas goes, I don't see that anywhere. I don't know what the radiologist was looking at, except maybe the area around the cyst...but still, it isn't an obvious tell. It's something that we'll have to determine during surgery." And that's where the surgery stuff comes in. He informed us that, the cyst was in fact the same thing she had as a child...it was not a calcium deposit as I was told. But, though we couldn't see it on the surface, that's because it had actually grown inward and dented in her skull. An illness, or compromise in her immune system in August or September is likely was caused the outward push of the cyst, making it's appearance on the outer surface of her skull. It was the size of a marble. Because it had appeared so fast, the concern now was that it would continue to grow and do real damage to her already damaged skull. It had to be removed.
Her surgery was December 9th at Doernbecher Children's Hospital. It was the scariest thing she's ever been through, but, she did so well. Of all things to worry about it was about the hospital gown she had to wear, and whether the doctors and nurses were going to see her butt. My worry was a little different than hers. I can't begin to express the
fear and the helplessness of seeing my child in a hospital bed gearing up for her surgery, then afterwards in pain, attempting to regain consciousness from a surgery. As we sat by her, for hours after her surgery, it seemed like forever. And, being in a recovery area full of children and babies was not easy to endure, either. The only reassuring thing was that every parent there was feeling the same thing we were at that very moment, and they were, just like us, trying to ease the pain and fear that their child was experiencing. In the end, I have to say, that was the best care I could have asked for for my child. Every staff member, down to receptionist, was as accommodating and friendly as we could have ever asked. That helped to shape her memories, too....and make it not so nightmarish.In late December, just 2 days before Christmas, we went back in to the surgeon for the post op appointment. He commended Katie on her wound care, and informed us that the biopsy done on the cyst, as well as an exam of her skull during surgery, showed NO signs of Eosinophillic Granulomas. NONE. Katie was misdiagnosed. As much as I want to be angry for having to deal with the emotional trauma of thinking my child could die, and having to tell her so, I find myself more happy with the outcome that is. There is something to be said about not wanting to pursue legal action for the emotional distress we suffered. Mostly so, because the emotional distress we'd suffer had her results been different, would have been greatly multiplied. I am thankful that we were spared such an experience.....and that much more thankful that Katie gets to go on living a normal teenage life...Hair and all!! What a fantastic Christmas present for all of us!
Regarding the headaches - She has migraines. She is now being treated for them, and so far things have been better since she's been on medication. Unfortunately the on set of these horrible migraines coincided with the bump, which is why it wasn't diagnosed as this from the beginning. My sighs of relief about this whole ordeal always include a growl, if you can imagine that. So, as a lesson to myself, ask more questions early on. I trusted that first diagnosis, and maybe next time, I'll get a second opinion.
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