Miracle Mayo Trip

So while we were in Rochester I stopped by the Mayo Clinic for a fantastic visit with my Doctors.

I'M TUMOR FREE!!

In fact, I've healed so well that I don't have to come back for five years!! FIVE YEARS!! When I left this time last year I was told that I would need annual check-ups for five years. Finding out that I don't have to go back until Addison is eight years old was so unexpected. Walking out of the office I think I was just as excited about my 5 years news as I was about being tumor free.

A highlight of the visit, was walking out of my appointment room and meeting up with my redhead buddy who helped me tremendously last Summer. He took one look at me (for the first time in a year) and remembered who I was. He asked, "SO?" It was so awesome to throw my arms up in the air and say, " No tumors!!!!" He jumped up off his seat and said, "Get outta here!!"

The calls back home were so much better than those I had to make last Summer. Pure joy!

I received instructions on what to watch for and if nothing comes up before then(which I KNOW it won't) , I'll see you in five years Rochester!!!

Ultrasounds and X-Rays

The day after the Kids Christmas Party, Clint flew down and drove up to Anchorage with Addison and I. Addison had appointments for Ultrasounds, a X-Ray and an appointment with a Pediatric Specialist. We've been to the doctors here locally, and to Addison's Peditrician to find out what was causing her severe pain.

Now here is where I get to brag: Addison was such a good girl during her exams, ultrasounds and tests. She did so good. Never cried never had a terrified moment. I am just so proud. NOW that is not to say she enjoyed it - she really could have done without the X-Ray. We had to take three and right as the last one was finished she looked up at me and said, "All done. No more please." Thankfully, I was able to tell her that we were done. Whew! But really, I could not have dreamt of her dealing with it any better than she did. Whatta girl!


So far they've narrowed it down to bladder spasms - which are apparently incredibly painful. It is something she should be able to grow out of; but if it happens again they want to see her again to do an internal exam. The thought of this scares me so bad. They'd actually have to put her under anesthesia and admit her into the Children's Hospital. I'm praying for that and many other reasons that this little nightmare is OVER!

Ahh, doesn't she look adorable in her little hospital gown? She was thrilled to have a mirror to entertain herself with while we waited . . .


On the upside, spending most of December in Anchorage has allowed us to spend lots of time with Nana & Grandpapadopolis.


Everytime we went to Anchorage we got stuck there. The roads home ended up closing due to bad weather - including a record-breaking 6.5 foot snowfall in less than three days! What a great place to get stuck - good company, good food and just a relaxing time (which was appreciated beyond belief - especially considering the reason we were there)!

Passing The Time

Some of the ways that Addison (and Monka) passed the time in Rochester, Minnesota:

Mooses Tooth with Uncle Clint (and later Miss Gina) during our layover in Anchorage


Meeting The Stars Are Dancing With Addison Champion


Snuggles . . . .


. . . And a nap with Mommy before surgery


Lambchop became the mascot of this trip


Happy just to be happy


Running to Mommy for hugs!


Addison fell in love with the "Biiig Castle!"


The Biiiig Castle was quite ornate


Monka and Addison even got to go exploring on the inside


Read to Grover


Horsey rides


Lily Tomlin impersonations


You just had to have been there:


Played Dress Up


Twirled her very first baton


Admired the local wildlife


Playing with boxes was very popular!


Time was well spent making funny faces in the mirror


Shopping!


Lots of good food was enjoyed




Sniffed all of the pretty flowers that bloomed during our stay


And even a few weeds


Loved the "Biiig Clock" and the local church bells that rang everyday at 5pm


Lots and LOTS of water fountains!


And they always found a reason for a good laugh!

Miracle Whip Clinic

Last month Sean, Addison, My Mom (Monka) and I packed up and headed to Rochester, Minnesota for a month. When we got there I had two days to settle Addison in, meet with my doctors and to get used to our new temporary home: a little two bedroom, two bath suite with a tiny kitchen.

The day of my surgery Sean went with me to the Mayo Clinic's Rochester Methodist Hospital. Sean got to stay with me for the first twenty minutes of my two hour wait for surgery. After the nurse & I dropped Sean off in the Family Waiting Room I went off and met with the surgical teams: My Orthopedic Surgeon (My Hip Doc), the Orthopedic Oncologist (Tumor Doc), and the Anesthesiologists (I had FOUR!). Each Doc had their own nurses and staff - so needless to say the OR was packed!

Throughout the two hour wait the Mayo Staff kept me busy with plenty of preparations. Everyone was so wonderful and made me feel at ease. The only part that concerned me was participating in the decision of which anesthesia to use. I just laid on my comfy hospital bed and let them wheel me to and from several rooms and never once got scared or stressed. They are so good! And that fancy pill cocktail they gave me during the last half hour probably didn't hurt either!

The surgery itself lasted about 1 hour and 45 minutes - and it went great! The doctors are fairly certain all of the PVNS has been removed. I will have many follow up appointments in the future to check on my recovery and to ensure that the PVNS has not returned.

Now, if medical stuff gets you queasy skip the nex paragraph. :)

They cut an eight inch incision down the side of my hip. From there the Hip Doc cut my greater trochanter which gave the access into my hip joint without cutting major muscles. The Hip Doc dislocated my hip and then the Tumor Doc did his magic. The Tumor Doc was "aggressive" in the tumor removal. He removed a golf ball sized tumor from the (ball and socket) joint and more tumors from the surrounding muscle, ligaments and other tissue. Once the Tumor Doc was through the Hip Doc came back and repaired as much of the damage he could with my cartilage, a labral tear and reshaped the ball and socket. The Hip Doc used three screws to put my greater trochanter back together.

I was in recovery for two hours before they wheeled me up to my room where, Sean, my Mom and a sleeping Addison were waiting for me. I spent the first twenty four hours after surgery taking pain killers and sleeping and Sean and my Mom each took turns visiting. I could hardly sit up, I basically I just used the bed controls to lift and lower my shoulders. The second day I gave up my painkillers as my beloved Nerve Block was doing it's job. The third day I finally got to eat!! That's three and a half days without food (just clear liquids) - I was SOOO hungry! The forth day I got the clearance from my Hip Doc and the Physical Therapist to go back to the hotel.

I was so excited to leave and be back with Addison, Sean & my Mom; but I was also very nervous about leaving the security of the hospital. My confidence was a bit shaken as my first experience out of bed was a rough one and also because all of the people on my wing (who all had surgery the same day I did) went home at least one day earlier than I.

The return to the hotel went relatively well. Addison had a bit of adjustment my first night back and that had to be the roughest part up to that point. Overall, my recovery seemed to go slow but I was steadily regaining my strength. The lack of mobility was (and still is) the hardest part to deal with. Even on the rough days my wonderful support system was there lifting my spirits. The phone calls, gifts, emails, texts and flowers were and are more appreciated than you can imagine.

After our long stay in the hotel we finally got cleared to head home. It was a LONG trip: an hour and a half drive to Minneapolis, a 6 hour flight to Anchorage, overnight in Anchorage (which involved two car rides) and another flight home. I list all of these details out because it's probably important to note since I only had started sitting up three days before - and not in a real up-right position. BUT we all survived and lucked out with smooth flights.

I've been home for a bit now and I think it's actually harder to be home. Being home I'm constantly faced with all of the things I feel need to be done and the things I want to do. For Addison, coming home has been difficult. Her entire routine is off and it's affecting her. She doesn't understand why I can't get down on the floor and play with her, or why I can't pick her up (oh, it just kills me to tell her that I can't lift her up when she asks) - but I keep telling myself that I'll be back to normal soon. I have to because it's KILLING me not to be there for her in the way I want. Okay, enough of that because I could write about this for days.

I've started Physical Therapy and now spend part of the day on one crutch. Most of my time is still spent laying around with my ice pack. My hip is still swollen enough that I can't even wear my jeans; but I'm seeing improvement in the healing and in my mobility with each passing day. I just need a little extra patience to get me through the next few weeks so I can get back to normal. I love normal.

Later Hair!

In preparation for my surgery, I had to cut off my hair. It was so long that the end of my hair met up with the waistband of my pants . . . . my, how I miss it . . . but having my hair short made life a lot easier after the surgery.



I donated the ponytail to Locks of 1ove in hopes that they can use it to help make a wig for a child battling cancer.

Ever Wonder . . .

. . . . How they just know??



One morning, while in Rochester, I came back to the hotel from a very scary/invasive procedure. When I got to our room I listened through the door and couldn't hear a thing. I decided to wait out in the hall for Addison & Sean to get up before going in. Plus, anyone who has a one year old knows that there is nothing more beautiful than a one-year old who is SLEEPING IN!!

Anyhow, I used those 15-20 minutes to sit in the hall, sip on my Dr Pepper (ahh, sweet, sweet Dr Pepper . . .) and pulled myself together. As soon as I heard Addison and Sean get up I went into the room.

Expecting the normal morning request, "MOMMY!! Yoda Yo" (Addison Speak for Yogurt). . . I instead got a sweet little girl in pink pajamas to reach out for me and wrap her little arms around my neck. She rested her head on my shoulder and just whispered, "Mommy." Ahh, my sweet girl . . . she snuggled with me for about 10 minutes giving me exactly the peace, love and comfort I needed. How'd she know??!!

Extra Mayo

So we made it to Rochester, Minnesota took the tests and they WIPED. ME. OUT.


The three-hour time change actually worked in our favor . . . I was at the Mayo at 3:00am Alaska time and back at the hotel by 11:00am Minnesota time. Which means Addison slept the entire time I was gone and never knew I was away. The only bummer was that meant I had to keep up with her after 4-5 (and less depending on what I had to face the next day) hours of sleep. But with Sean's help and motivation we made it with no meltdowns (on Addison's or my part).



Addison really seemed to enjoy being at the hotel. She slept like a champ, got quite accustomed to eating out (she'll never eat my 'cooking' again) and loved the attention she received from strangers (hotel employees and guests).


Rochester and Minnesota in general may be home to the friendliest people in the world. I loved it! The hotel employees did their very best to make the hotel feel like home and help us in anyway they could. The Guests at the hotel were also great. The atmosphere was more like dorm-living. Most everyone who was there was there for the same reason as I and you immediately formed a bond with those people. That said please include a super special couple, Yvonne and Tom in your prayers. I'm not going to go into any detail, but they sure could use a little extra help these days.

As far as my tests go I also don't want to bore or even gross anyone out with them - but they were NOT pleasant. I did find out that I do have PVNS, along with three other issues with my hip. The Doctor said I have "massive amounts of PVNS" and I just like to throw that in to make me sound tough!

Best News: My Main Doc is not concerned about cancer. He explained that they'll still do a biopsy - but at this time he is not worried. YEA!!

Next step: One month to six weeks in Minnesota and a pretty crazy surgery. One doctor to remove the tumors and my "Main Doc" to fix the other stuff and rebuild my hip. There is also a chance that a second surgery will be done one month after the main surgery. I'll be down and out for quite awhile with a year for recovery. Not sure how I'm going to handle being laid up. I'm used to being with Addison ALL. OF. THE. TIME. So I'm not sure how I'm going to handle a few days in the hospital and weeks of laying around. That part scares me way more than any of the actual surgery and procedures.

On the bright side, the Mayo Clinic was amazing!! It is HUGE, yet you feel like you're the only patient they're taking care of. There were hundreds of patients at the clinic and probably 30 people behind the scenes working for each one. It was just unreal. They've got the system down, which of course, only increases my confidence in them and in my surgeons. I know that they'll do everything they can to get me back on my feet and playing with my favorite little girl!

A Side of Mayo Please!!

The past two weeks have been bizarre, scary, fun and just plain exhausting.

In a way those two weeks began about 14 years ago . . . I was told when I was in high school that I had juvenile arthritis in my left hip. Every so often my hip would ‘lock-up’ and hurt BAD! I never had much for range of motion, but it didn’t slow me down too often. So I learned to deal with it and remained pretty dang active.

Since then my hip has locked up so many times and I just ignored the pain and kept moving. But after so many years it wasn’t a big deal – just a painful one. Sean had been asking me for years to get it checked on - but I just told him it would pass and to quit worrying .

Well, fast forward to last October when my hip locked up the same way it always does. It bugged me for days and at night I would cry when I had to roll over. It wasn’t a big deal at the time – I had literally dealt with this hundreds of times over the past decade. The final straw was one morning during this October episode and I could barely get myself out of bed to retrieve Addison from her crib.

I could hear the little gal babbling away over the baby monitor and occasionally asking “Mommy?” Thank goodness, she wasn’t in a hurry to get out of bed that morning. But the whole time I struggled to get up, I thought to myself, “Wonder if there was a fire or some sort of emergency that I need to get her quick?” I wouldn’t have been able to do it. It took me about five minutes to get from the bed to my bedroom door. In an emergency I would have most likely been too late. THIS WAS MY WAKE-UP CALL. I needed to get this fixed.

So a few days later I was at our local clinic in hopes to meet with a doctor to see if I could be referred to someone who specialized in hips or arthritis. The doctor checked on my range of motion and discussed my pain with me, but he wasn’t convinced that there was too much wrong. I told him that I wasn’t looking for surgery or anything invasive . . . maybe just a magic little pill that would help my joint work a bit better. He kind of laughed and said that most hip problems are repaired with hip replacement surgery and that he wasn’t aware of that kind of pill.

By now, I got the feeling that he wasn’t willing to give me a referral. He sent me off for x-rays and when reading them he didn’t see too much wrong. Maybe a little irregularity in my joint, but nothing to be concerned about. We talked more about the size and shape of my pelvis than we did about my hip, because he was impressed that I was able to deliver such a big baby – which, let me tell you, made me feel like one tough Mama!! ☺

But back to the hip . . . The Doc said he had to send the X-Rays off to another location where they would be read – it was just their standard procedure. And he wasn’t convinced that I needed a referral to a hip specialist since I wasn’t interested in surgery. So, I left the clinic a bit less than impressed.

Two days later I get a phone call from the clinic asking me to come in the next day to meet with the doctor. I went in not expecting much. Afterall I hadn’t gotten anything I had expected during the last visit. The Doc explains to me that the Imaging Lab did see some issues and a few days later I was in Anchorage having a MR.

Halloween morning I received a phone call from our local clinic asking if I could come in and see the doctor. It was his day off and he was willing to meet me there whenever I could make it over. WHAT??!! I had never been so accommodated by a doctor before. . . It was weird.

I dropped Addison off at my Mom’s a few hours later and met the Doc at the clinic. He read the results (which were done by the Docs in Anchorage) saying that I had pigmented villonodular synovitis (PVNS). The Doc was fantastic. He had looked up as much information as he could find on this disease for me and was straightforward with me. He didn’t know much about this disease and he had already contacted a few doctors about my condition and was waiting to hear from them. I am just going to say it: I don’t like it when a Doctor claims to know EVERYTHING. And I appreciate the fact that he was candid and laid it out there. I also appreciate that he gave up part of his day off to talk to me. He eplained PVNS to me as best as he could.

PVNS: Basically tumors growing in the joint which can impact and sometimes invade your bone. The synovial lining in my hip has somehow decided that it wants to make tumors rather than lining. Rarely are these tumors cancerous. It’s not genetic but they do not know what causes it. 1.8 per million people have PVNS and there doesn’t seem to be anyone who claims to know much about it.

The local Doc told me that he hadn’t heard or thought of PVNS since medical school – so I was kind of a refresher for him. And I am pretty sure that he likes the idea that he’s in on something weird . . . which is great because he was helpful through this process – even though I never got that dang referral to a hip specialist like I had originally wanted!! Hehehe

Halloween night, a few hours after my last visit with the doctor I came home to a message on my voicmail from the doctor saying that the only doctor in AK that he’d recommend to me, wouldn’t take my case. Apparently he hasn’t had any experience with PVNS either. The other docs (University of Washington and a Boston Doc) wouldn’t touch it either. BUT the Mayo Clinic has the guy for me and he has actually had enough experience with PVNS that he’s written several articles about it for medical journals and is high in the food chain in the Orthopedics department of the Mayo Clinic The local doc also continued on that I could call anytime with questions and he’d do what he could to help. WOW – never had these services offered up from our local clinic before. Pretty nice!

Ad that brings us to the beginning of the crazy past two weeks . . . Which began on February 28th when Addison, Sean & I boarded a plane headed for the Mayo Clinic in Rochester, Minnesota to meet PVNS’ National Expert.