Friday, April 11, 2014

Favorite Fridays~Our Journey through Oz with UW Hospitals, Clinics, andthe American Family Children's Hospital

Ironic, isn't it, that the place I wanted to flee from so desperately this past Tuesday is the place that I write about today as one of my favorite things that I'll miss about Madison when we move?  But it the Wizard of Oz, Dorothy wanted to get home from Oz too, but she made some amazing friends there, learned a lot about herself, and did some MAJOR growing up.

When our house first landed in Oz, it was because Evie was diagnosed with WAGR...and the first friend we made was Glinda and the Munchkins...all the doctors, nurses, and staff at our own little UW clinic here in town have been amazing.  Following up on ear infections, UTIs, and wanting to ensure that, not just Evie, was comfortable, but also Jeff and I.  We have been blessed with doctors who want to learn, and want to be a part of this journey of discovery with us.
So, they showed us the yellow brick road...a path toward satisfaction in this life...a path of hope, with a promise of a future.
We met our "Eye Team" at Dr. S's office.  I was still a frightened new mom, with a rare syndrome clogging up my brain.  I just knew I wanted to get back to that innocence BEFORE WAGR.  
We not only took our first scary steps with Dr. S~ countless exams under anesthesia when Evie was just a few weeks old...surgeries beginning around 3 months; but he taught us how to "think" in those early days and encouraged us to keep our positive outlook on things to come.
We went to the Waisman Center next to meet with a geneticist.  For some reason, being at the Waisman Center, and seeing all the services they had to offer families made me feel better.  I never felt like I was stuck in that place between wanting to accept the diagnosis and wanting to just be "normal".  
At the Waisman Center, being DIFFERENT was being NORMAL.
Dr. W made lots of recommendations, accepted the advice of the International WAGR Syndrome Association (like by referring us to a pediatric endocrinologist just so we could get to know one), and helped us feel free to FEEL.  
We may have been broken-hearted, but we were reminded that even broken-hearts can heal.
When we entered the forest; dark and foreboding, we heard that Evie had Wilms Tumor.  She would have to undergo chemotherapy and have her kidney "re-sectioned"; have part of it removed.  The doctors, nurses and staff of the Hematology-Oncology department, as well as our urologist, gave us courage to persevere.  

Again, I think it's very rare to find doctors who will gladly look at "mom" or "dad" and say, "You know many more people with WAGR than we do...what do they say?"  It's not like we mapped out our treatment, but when Evie's ptosis was so bad, our doctors listened when I said that people with WAGR responded much more dramatically to vincristine, just as those with Down Syndrome, they held the vincristine a couple of different points in Evie's treatment.  
They gave us the courage to be advocates, while also allowing us to mourn and experience the grief of cancer.
We made it out of the forest and into the sunny Poppyfield of having a child who survived cancer.  While there, you like to catch up on some long over-due sleep, but you also still have some scary moments like all of the follow up scans and some much needed re-building of the immune system after having been wiped out by chemo.  We had to rely on our local clinic, (who we first met when our house landed in Oz) to rescue us on several occasions:  UTIs, pneumonia, and sinus infections abounded those first few years post-chemo.

Once we reached the Emerald City, probably around age 6 years for Evie, we were really in a good place medically.  Not so many appointments, a lot of "Six Month" follow-ups.  It was a fabulous place, a that medical utopia.  Our newest team of docs and nurses with the endocrinology department showed us that Evie was still a "horse of a different color" and she was celebrated for it.  Suddenly it was a "Jolly Old Land of Oz " and the daily "fear" that we seemed to have looming over us was dissipating.  
Our work was not done yet, though...we still had more that the Wizard wanted us to do.  Our broken-hearts had more they would need to endure.
The Wizard told us that, if we wanted to return to a "safe" place, we would need to kill the Wicked Witch by filling the hold in her heart.  The hole wasn't an immediate threat, but was looming where ever we went; taunting us and letting us know that it WOULD need to be dealt with eventually.  In spite of our fear, we knew that before we got to our knew home in Kansas (ummm....Reno)...we would need to take care of the Wicked Witch. 

Our friends from along the way came with us to the Witch's castle...Our favorite sedation nurse, Judy, who we hadn't seen in about 6 years was the nurse taking care of us from 6:30 am check-in until her shift ended at 2:30 pm.  We chatted all day long, (Evie was sedated, so that made chatting EASY!).  And even Dr. P,  our oncologist, stopped in on Monday night after Evie's surgery to say "hello" as she had seen that Evie was in-patient that night.  Having friends like these who travel this journey with us makes life so much more enjoyable.  They don't just care about us when we are on THEIR schedule; but they seek us out whenever we are in Oz.

The Wicked Witch is gone, and we wait for the Wizard to clear us for our return to Kansas...(um...Reno...).  And, although I wanted to flee from the hospital whenever I could...the smells, the sounds, the sights...I also knew that some of the most life-changing days of our lives were spent right Oz.  We learned, we loved, and we fought courageously.

No, Aunt Em -- this was a real, truly live place. 
And I remember that some of it wasn't very nice....
but most of it was beautiful.
But just the same, all I kept saying to everybody was, I want to go home. And they sent me home.
Dorothy ~ The Wizard of Oz


  1. Best Ever blog post. I always wonder how you're gonna top the last one...but somehow you always do. I hope you'll share this with all the people in OZ - I think it would be a wonderful way to thank them, and I'll bet they will each treasure it forever....



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