This blog is not for the light-hearted or easily offended. If either one of those descriptions applies to you, i would suggest you start drinking before you read this blog. A sense of humor is suggested. If you don't have one that sucks for you … find one and get a life!

In which keely has a medical condition

DISCLAIMER:

I want to give you fair warning that this is a fairly long and serious blog entry so if you’re looking for HUMOR, my humor blog isn’t so damn funny today. Having said that, I approach even the most difficult situations with humor, so it’s not depressing either. In fact, I view the entire situation as a learning opportunity and perhaps you will too.






As I sit here at my computer I realize that I am constantly alluding to a medical situation that Keely had but have never actually explained it. Although Keely will kill me, I’m going to go ahead and talk about the situation since it hugely affected our year last year, caused me to take her to London for her birthday, and to be honest, could well be a major factor in her (and my) life going forward. So here goes.






First I need to give you a little background on the aches and breaks of Keely MacDonald. On my five page list of stories that resides next to my computer, this post will combine many of them. This might mean that I’ll run out of stories some time in 2011 but so be it.






Keely has broken her arms 8 times. You heard me right, 8 times. I believe I mentioned the first time that she broke her arm in “I’m not even worried about it” but unfortunately, that was just the beginning. In that calendar year alone, Keely broke her arms 3 times. Left, right, I’m not sure which, but it happened. Honestly, if I hadn’t had a multitude of “pet” orthopedic doctors on call, I would certainly have been hauled into court for child abuse. But they all occurred just by happenstance. One was falling off her bike, one was getting tripped during gym, and of course, the first one was playing tag across the street. These things just seemed to happen, especially to Keely MacDonald. She had a file a mile thick at the doctor’s office. At one point, I had a multitude of doctors’ numbers on speed dial. I once called a friend of mine on his cell phone and he answered and immediately said “Lynn, I’m in the mountains and nowhere near home; call so and so (his partner)”. I felt that he should have christened his house after “The MacDonald family” since we contributed so much money towards it.






At any rate, Keely had quite a few broken arms and that doesn’t include pulls, strains, sprains and stress fractures. That’s the set up for this post. Are you with me folks? Fast forward a few years and Keely is off to college at Duke University to start her freshman year where she proceeded to party, have fun, eat and occasionally attend class (my opinion, not hers). In January of 2009, she called to tell us that her hip is hurting and she’s having a hard time walking. She’d already had a stress fracture in her foot the previous fall so I, of course, ignored her and told her it’s probably due to the partying and the “freshman 15.” I felt confident that it would go away as time goes on.






She kept complaining, and complaining and by the summer she said her hip was really, really killing her. I was still not too concerned as she was out of school, working out really hard and losing weight. I figured it would all go away eventually but finally in June I relented and took her to see the doctor. They took X-rays and didn’t really see anything horrible so they told us it’s probably a hip pointer. What is a hip pointer injury? Basically it is an extremely painful, acute injury to the iliac crest of the pelvis. (Yeah, yeah, yeah … stick with me here) It causes bruising in the muscles and the pain can be intense, even felt when walking, laughing, coughing or even breathing deeply. (I found this explanation on Google). Apparently, you can get it from a direct hit or a hard fall.






Of course, I know that Keely drinks and when Keely drinks Keely falls (actually, the child falls even when not drinking so you can imagine my complete and total lack of surprise) and Keely had hurt herself in January so we were happy that at last we had a diagnosis. We knew it wasn’t serious but the doctors told Keely she needed physical therapy to recover from the injury. It was all good. Keely was living at home, lifeguarding as her summer job, and undergoing physical therapy for her hip.






Soon enough it’s August and it’s time for Keely to go back to school so we transfer her physical therapy to Duke Sports Medicine at the Finch-Yeager Center on the Duke campus. This is a great place to be because all the physicians for the Duke Sports teams are located there and they are used to dealing with injuries like this. Keely continued therapy but alas, her hip kept getting worse and worse. She was in agony 24/7 but she continued to work out like crazy so I was still not particularly concerned because I figured, “how bad could the pain be if she’s working out so much?” (I feel a little bad about this in retrospect but hey, I’m a mom. Ignoring my kids bitching is what I do).






Finally, in early October I talked to our doctor here in Greensboro and we agreed that Keely should have a CT Scan when she came home for Thanksgiving break (November for you non-Yanks out there!) I told Keely to hang on for another 5 weeks and we would check it out. Meanwhile, her physical therapist wasn’t thrilled with how Keely was doing but she was glad we were going to check it all out soon.






Keely turned 20 on October 17, 2009. She proceeded to go out, get sloshed, go dancing and last, but not least, ride and fall off a mechanical bull. She had a fantastic time but by the time she rolled into therapy on Tuesday the 20th, she was walking with a major limp. The therapist took one look at her and said, “you’re seeing a doctor TOMORROW.” Keely told me about the appointment and I said, “I’m not coming down there tomorrow. Let’s see what the doctor has to say”.






Next day Keely showed up at the Sports Med center and they did an Xray. Before she knew it, she had 8 doctors standing around her making her walk up and down the hall, balance on one foot and other assorted things. They were all mumbling and talking to each other while they bossed her around. They scheduled her for a CT Scan and MRI the next day but Keely told them she had a test and would have to put it off until Friday. They agreed, and she went back to the dorm and called me. I, of course, was not happy when I heard that 8 doctors had watched her. If you can get one damn doctor to pay attention to you then you’re lucky so 8 is unheard of, and from a parental point of view, more than a little unsettling. The fact that they wanted a CT Scan and MRI as soon as possible wasn’t too thrilling either but the kicker was the “discoloration” in her pelvis that had she had slipped into the conversation. “Discoloration? What the hell does that mean?” I ask. She, of course, has no idea and tells me to just chill.






Keely goes and gets the two tests, all the while complaining that this was cutting into valuable study time, and an appointment was set up for the following Wednesday to meet with her doctor. I was definitely going down to this appointment because I wanted to know what was up. I wasn’t terribly concerned YET but having been through so many medical disasters (I’ll explain at a later date) the uncertainty of the situation was unsettling. The next Tuesday Keely gets an email from Duke Oncology confirming an appointment had been set up. She forwards me the email and I immediately have a massive heart attack. Talking about a WTF moment; WHY is Duke Oncology seeing my child? I had no idea but IT COULDN’T BE GOOD! Thank god we had a doctor’s appointment the next day at the Sports Med place and you can be damn sure that I was going to get to the bottom of all this!






We showed up at the appointment and the doctor was very serious and told us that Keely had a mass the size of her fist in her left pelvis as well as a stress fracture in her right pelvis. Very frankly, they couldn’t believe she’d been walking around, working out and living a normal life at all. “What kind of mass?” I ask. They weren’t sure yet but the odds of it being “cancer” were small. Of course, the odds of having the damn thing in the first place were about one in ten million so excuse me if I didn’t find a lot of comfort in that statement. At any rate, they didn’t deal with “masses” so we were immediately sent over to the Oncology department where of course, they did. One thing I’ll say about Duke University Medical Center, they move fast if they need to. Our appointment was in two days time and this time both Kevin and myself accompanied Keely to the doctor.






By now, they thought that possibly the thing is an Aneurysmal Bone Cyst, hereby referred to as an ABC. Knowing as many doctors as I do, many of them orthopedic guys, I was on the phone trying to find out everything about ABC’s that have ever been written. Being the Google queen that I am, no stone was left unturned. The problem is that ABC’s, the most likely scenario, are almost identical to several types of bone cancer so the fact that they didn’t think cancer was likely was not particularly soothing. As a matter of fact, the more I read, the more concerned I was getting. After all, we were talking about Keely MacDonald, the biggest trouble magnet on Earth!






We went to the appointment and met our doctor, Dr. Shalini Ramasunder. If I had searched a million years, I could not have found a more perfect fit for us and Keely than Dr. Ramasunder. She was young, fun, knowledgeable with an incredible bed side manner. More importantly, she watched Lost and had the exact same birthday as Keely, October 17th, which gave us some common ground to discuss. She explained that there was a very large mass in Keely’s pelvis and that she was amazed that Keely had withstood the pain. (I got a very dirty look here as I had been ignoring her pain for months). Not only that, but Keely needed to go on crutches immediately so that she wouldn’t have “catastrophic hip failure.” “What did that even mean” I asked? The femur would accidentally burst through the pelvis and Keely’s life would be essentially ruined. Well that sucked!






But unfortunately, there was a dilemma. The location of the tumor was in such a bad spot that they didn’t know how they could actually biopsy it without contaminating the entire area. This is apparently a big deal because if it is cancer, then not only would the tumor have to come out but anything that either the needle or the tumor had touched would need to come out. So, because the spot where Keely’s ABC was located was so rare, she would need to discuss the situation in “committee.”






What is “committee” you ask? It’s when the many different departments of doctors at Duke get together to discuss “complicated” cases and try to figure out the best way to handle the situation. Kevin and I weren’t thrilled that her case was so complicated and the fact that it made it to “committee” wasn’t as exciting as you would think. At any rate, a decision was rendered that they would attempt a needle biopsy which would require an anesthesiologist, a surgeon, a pathologist and a cardio thoracic surgeon on stand by since the tumor was located directly next to the femoral artery. Well, this was just getting better and better. I was actually starting to feel a little proud of Keely by just how fucked up this situation was!






The biggest problem with the test was that the only way to stop testing was if it was cancer. If it was cancer, they would stop all surgery and begin cancer treatments. They wouldn’t do any surgery until the cancer was dead (or you are, I suppose). Even if the biopsy was clear, it didn’t mean you don’t have cancer. It just meant they had to go in and do major surgery and take out even more of the mass. If it was still clear they would remove the entire thing and hopefully, plug the hole with a bone graft. So, we had a game plan. Biopsy (hopefully no cancer), surgery (hopefully still no cancer), removal of stupid irritating tumor, bone graft to fix the tumor and then 3 months on crutches while the bone graft filled in.






Ok, that’s not so, so terrible I was thinking. We can handle this. We make a billion arrangements with the school (and shout out to Duke Special Services, you were awesome here). Meanwhile, Keely’s roommate had decided that Keely was making up the entire situation up for “attention” so as you can imagine, things were tense there. Her room was also on the 3rd floor and that was never going to work as Keely was already on crutches and navigating the campus alone was no picnic but stairs? Forget about it. Therefore Keely would need to change rooms for her second semester. Two girls, Kinsley and Ronnie, offered to have Keely move into a triple with them and they offered to help take care of her. This magnanimous offer would turn out to be a lifesaver so a little shout out to them as well. THANKS KINSLEY AND RONNIE!!






We also had to figure out handicapped parking, bathrooms, how to get to classes and therapy, basically the works. Her biopsy was scheduled for November 16th and arrangements had to be made for Keely to receive incompletes in her courses as we didn’t think she would be returning again before January. As you can imagine, it was a very fun time in the MacDonald household. It’s amazing how the domino effect comes into play with a situation like this. Keely has a sister at Duke and the sheer stress and worry about Keely was affecting her as well.






We went down for the biopsy where Keely promptly passed out after seeing the IV needle. This was going to be loads of fun! Kevin and I were talking to the radiologist who was going to be doing the needle biopsy. “Are you aware of Keely’s situation” we asked him? His reply: “I don’t think there’s a doctor at this hospital who’s not aware of your daughter’s situation.” And this was supposed to make me feel better HOW?






At any rate, they did the biopsy and the news was good: no cancer yet. We scheduled the surgery for November 23rd so we could yet again have a screwed up Thanksgiving break and take Keely home to recover. She was sore from the biopsy, the crutches were killing her, and she was under orders to get as much school work done as possible before the surgery. She had the end of the semester and her finals coming up.






We had our last pre-op appointment and we met some of the many doctors who would be involved in the surgery. Other than our orthopedic oncologist, Dr. Ramasunder, we meet Dr. Brigman, the senior orthopedic oncologist at Duke. This was a two person operation so they were going to be working as a team. They explained the procedure and told Keely that because of the large incision, she might lose all feeling down her left leg. Keely asked Dr. Brigman “does that mean if I get a mosquito bite on that leg, that it won’t itch?” He was speechless. It was so funny that he was completely stymied. Apparently, this is not the typical question asked about this condition. At any rate, we were all psyched to get this thing done and the tumor out of there. Keely had already been on crutches for three weeks and she was none too happy about the situation.






Day of the surgery. November 23, 2009, we showed up at Duke at an ungodly hour to sit around and wait. We live about an hour from Duke and we had to be there around 6:30 a.m. so we started the day out tired. We waited and waited and finally they called Keely back. They put in her IV, she didn’t pass out this time and then we waited. And waited some more. Apparently the first surgery of the day was running longer than anticipated so they were behind schedule. Finally they took Keely back there.






Some of the rest of this is heresay since Kevin and I weren’t actually in the operating room and we got the information second hand. Apparently, after giving Keely several loopy drugs, she proceeded to entertain the entire operating room telling them all about how her Thanksgiving was going to suck because she would be stuck in the hospital so wouldn’t it be great if they could all come and hang out with her. She told them about the shows she watched on TV, joked around with them, you get the picture. I was informed later that the entire OR was in stitches and that Dr. Ramasunder had never seen anything like it. No wonder they finally put her to sleep.






Finally, around 5:00 pm we were paged to the phone to talk to the doctor in the OR. The good news was that it wasn’t cancer, the bad news was that the damage was way, way more extensive than they thought. You see, they had told us that if the tumor had gone through her acetabulum (the cartilage that protects the pelvis from the femur), she would have been in tremendous pain and wouldn’t have been able to cope. As it turns out, not only had it burned through the acetabulum but it had created a hole the size of a half dollar. As a result, they couldn’t do the bone graft and couldn’t fill in the massive hole in her pelvis. The only option left was a “complete pelvic reconstruction”. Now that is a horrible situation because once you start down that road, there’s only so many years left before you can no longer fix the pelvis. Doing something like this to a 20 year old is a nightmare situation that nobody wanted to consider, and consider it they had – for hours. Finally, they decided to close her up and wait and see what her body did to handle the situation. After all, she was only 20. Of course, Kevin and I didn’t know all this at the time. We were busy celebrating the “no cancer” news with Andie over dinner.






When we heard the news we were pretty decimated, I’m not going to lie. They told us she would never run again, never do anything high impact, she would have to be careful for the rest of her life. Her pelvis was already beyond a hip replacement and no bone graft could be attempted at the time. She would be on crutches for 4-6 months (it turned into 6) and the long term outcome was uncertain. Not only that, but ABC’s have a 20% recurrence rate and considering we were talking about KEELY MacDONALD, we weren’t feeling so optomistic. So yeah, not a great day.






I’m going to gloss over how shitty this period was. I will say that it was an extremely painful operation for Keely and the little nerve-cutting thing on her leg was a painfully huge deal. We did get through the period with the child begging me to “kill her if I loved her.” It wasn’t a stellar month and to be honest, we’ve had better Christmas’. However, having said that there were moments of incredible humor even during her hospital stay. If I went into all the details, this post would be about 10 pages long and I’m not going to do that to you but I will say that Keely + Narcotics = some very funny moments. At any rate, she finished her incompletes in school (with A’s), went back to school in January for second semester and soldiered on although she will be forever known as “the girl who was on crutches all year.”






Looking back one year later, it’s all a little hazy. I think the brain does that to protect us so we can get on with our lives. We have an appointment on Thursday and we’re still not sure what to do with Keely. She is doing terrific right now; no pain, getting in shape, finally enjoying her life again. She will eventually have to have surgery because at a minimum she will have terrible arthritis. She’s also still at risk of “catastrophic pelvic failure” because of the massive hole in her pelvis. But she’s happy, optimistic, warm and loving and I wouldn’t trade her for the world.






When this started happening I told her “Keely, in the long run this will be the best thing to ever happen to you. Once you get through this, you will have the knowledge that you can do anything, be anything you want. It will be the benchmark that you compare everything to in your life. Life isn’t about what happens to you, it’s about how you deal with what happens to you. This problem, and how you react to it, will define you as a human being”.






Well, I know that this was long, serious and wordy but to understand me, my life, my kids, and very possibly this blog, it needed to be written. And by the way, if you get a mosquito bite on an area where you have no nerve endings YOU DO NOT FEEL THE BITE. Now you know!







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4 Comments

  1. Nicki
    October 21, 2010

    Hi Lynn,

    Newly following you from MBC. I can't wait to read up on your blog and I promise I will as soon as I am done with the crap I have to do here! Visit my blog if you are interested! Take care!

    http://non-trad-diaries.blogspot.com

  2. Nicki
    October 21, 2010

    Okay, so I decided to read it before doing my work. Wow!!! You have all been through so much that it makes all our family has been through seem minor! You seem like an amazing family and Keely is an extraordinary girl! What a terrificly poetic way you worded this life lesson in the end. I hope if something like this happens to my babies, I can be as strong and gracious as you!!!!

  3. Heather
    October 22, 2010

    Wow, what an ordeal, she must be an incredibly strong woman, I'm not at all surprised you are so proud of her.

  4. Larcy
    October 24, 2010

    Incredible Lynn! What an ordeal! Thank God it is over with! How is Keely now? I hope she is healing and no complications. THis Christmas season will be a better one than last years! =)

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