Thank you for visiting Rosie's Caring Bridge Site! She is an amazing 11-year-old that loves fishing, birdwatching, agate hunting and drawing. In January of 2022 Rosie started complaining about her right rib cage feeling "weird". After a trip to the chiropractor, we learned that she had mild scoliosis (her spine had a curve to the right side) and her right ribs would go out of joint sometimes. Within a few months, we noticed that Rosies upper spine was starting to bulge outwards. After more chiropractor and doctor visits she was diagnosed with severe thoracic kyphosis (curvature of the upper spine causing a "hunchback" appearance) and her spinal cord was pinched. After reviewing some of Rosie's X-rays, her doctor noticed that she had opaque oval "spots" in her ribs on her right side and in both femurs. At this point, she was not in any pain (thank goodness!) and her kyphosis and these strange "spots" in her bones did not interrupt her day-to-day life. Her doctor suspected that the spots were caused by something called Langerhans Cell Histiocytosis. This disease is known to show these odd spots within bones and can be managed with a medication. On Halloween of 2022 Rosie started to lose function of her right foot and leg. A week later, she underwent a sedated MRI, CT and bone biopsy of one of the "spots" in her femurs. In recovery that night, her right leg and foot reflexes were so poor that she could not stand or walk. She was admitted to St. Mary's Hospital in Rochester, Minnesota and the next day, underwent urgent surgery to decompress her spinal cord. During the surgery, the surgeons noticed that her bone quality in her thoracic vertebrae was poor. The most affected vertebra was T7 and this bone was removed and sent for analysis. Rosie's spinal cord was successfully decompressed, a cage was put around her spinal cord where T7 used to be, and the doctors performed a fusion with rods and screws from T5 to T11. Rosie's recovery was incredible! She regained full function of her right leg and foot and her back was much straighter! In the weeks after her surgery, the results from her femur spot biopsy came back as negative for Langerhans. This was great but it left us with a mystery! In January 2023, the test results from her T7 vertebra came in and Rosie was diagnosed with Gorham-Stout disease. This disease is extremely rare (approximately 300 cases are known world-wide) and causes her lymphatic system to eat away at her bone marrow and replace it with lymphatic vessels. It is not curable but is treatable. This answered a lot of questions about her soft vertebrae, her right ribs feeling "weird", and what was causing the spots in her bones. Rosie takes a medication to stop/slow the progression of the disease and there hasn't been any detectable advancement of the disease since she started on her medication. During this time, we noticed that Rosie's back had started to round out again and her kyphosis was returning. MRIs and CT scans showed that her thoracic vertebrae never fused due to the Gorham-Stout disease. Her surgery had failed. Rosie still wasn't in any pain and was able to function normally. In May 2023, we noticed that Rosie was walking differently, and she was experiencing numbness in her right leg. After examining her, the doctor suspected that her spinal cord was pinched again. This was later confirmed with CT and MRI and the doctors scheduled her surgery for August 2nd, 2023. In June, Rosie received an infusion of a medication to build and strengthen her bones. On the 26th of July, Rosie had pre-surgery tests and surgeon consultation where we received some pretty sobering news. We have to proceed with surgery or Rosie will end up paralyzed at some point in the future as her spine continues to collapse and increase the pressure on her spinal cord. However, this surgical procedure is high risk for paralysis. The plan is to remove all the rods, screws and cage around her spinal cord, remove two additional vertebrae, place a new longer cage around her spinal cord where the three vertebrae used to be and replace the rods with longer and thicker ones. All of this requires the use of drills, mallets, chisels, scalpels, etc. These instruments are being utilized right next to her spinal cord. After surgery, Rosie will be on bed rest for a length of time to give her spine an opportunity to heal and fuse. With Gorham-Stout disease, this is a challenge. Her bones do not want to heal. Rosie just wants to be a normal kid. She has had to deal with more medically in the last 1 1/2 years than some do in their entire life. This has taken quite a toll on her mentally and emotionally and has been seeing a therapist and is on medications for depression and anxiety. This has helped immensely. We are bracing ourselves for whatever comes next. We are hoping and praying for miracles. Please hope and pray with us.
Hey everyone! I hope you are all well and getting ready for the holidays. I am WAY behind this year but am trying to give myself some grace. Thankfully, Rob and Ruby have been helping decorate for Christmas this year and it has saved me from still having Halloween and Thanksgiving decorations out in December. HAHA! For all you last minute holiday shopping and prepping folks out there...please give yourself some grace as well! Life can be absolutely CRAZY!
I have some AWEWOME news to share! Rosie got her halo and torso cast off today! She is FREEEEEEEE! She is doing great and is figuring out her new center of gravity without 20-30lbs of extra weight on her top half. She has no pain so that is amazing!
We got to Mayo really early this morning for a CT, blood draws and other miscellaneous appointments. The big appointment today was with the doctors where they reviewed her CT scan and determined if her back had healed enough to transition from the halo/cast to a brace. The Mayo doctors were exceptionally busy today so we waited for about 3 extra hours until we could see her doctors/surgeons and the verdict was positive. Her spine is fusing and they felt comfortable removing her gear. She has a spiffy new brace now and it fits her pretty darn well.
As her mom, I am elated and am also terrified. I was able to give her a real hug today for the first time since the beginning of August. That was one of the best hugs of my life! Rosie is getting better, and I want to celebrate that. At the same time, she was super safe in her cast and halo and that is gone. I certainly didn't want the halo/cast forever but leaving that behind and having a brace gives me some anxiety. I feel like she is fragile as tissue paper and do not want her to break. It is the new normal for a while and this will become old-hat, just like her brace/halo install.
Anyways, I wish you all a Merry Christmas, Happy Holidays and a Happy New Year. I sure hope 2024 is a wonderful year for you all!
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