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Even though my heart was set on school this semester. Life sometimes throws us the unexpected. I recently was in the ER and had to have surgery. This forced me to pivot and in doing so I have chosen to put my education on hold. My mental health, recovery, and preparing myself for a full jaw reconstruction are my focus. I will have surgery in 6 months. Treatment is going well. No pressure. Open to the new possibilities... Gorham-Stout Disease patient receiving Zometa infusion via port.

I wanted to take a moment to thank everyone for the support you have shown. Thank you deeply for your contribution. From ordering my handmade gifts, to sharing my story and blog site. I wanted to give a quick update. I have begun my spring semester. This week I picked up my lab kit, books, and other school supplies. All my scans went well, and my arteries are healthy for reconstructive surgery. I am anxiously anticipating my ENT appointment next month to hear the plan and see the strategy he has for my upcoming surgery. Hopefully, it will be scheduled shortly after this meeting. Your generosity has given me the confidence to share my campaign at the Queen Creek Farmer’s Market. I will be speaking to Arizona’s Legislature next week about my experiences and the impact of not having speech therapy accessible has impacted my quality of life. Swallowing, speaking, and eating is essential and when you are limited it alters one’s livelihood. I also submitted this photo to a photo contest for people who have rare diseases that are trying to live their best lives. It was with the local legend "Michelin Man"at Cave Creek Regional Park. He is unique and truly special. I love to seek out the saguaros with rare mutations. Your compassion has meant the world to me, and I am beyond grateful for your love and encouragement. I cannot thank you enough for being part of this journey with me. Your kindness is a light in this tough season.  https://gofund.me/ce3f09d8

I had been feeling anxious and impatient. The medication I’m taking has awful side effects. My mental health had been impacted. I decided to see a psychologist and joined a support group. My homework was to listen to this podcast/audible. Mel Robbins “The Let Them Theory” has let me focus on the important things in my life without feeding into negative energy. I encourage everyone to learn this method to deal with anything in life. It is also backed with neuroscience which I love! The Let Them Theory https://www.melrobbins.com/letthemtheory

Valentine's Gift $25 Gift   2oz. Disinfectant Spray   2oz. Sugar Scrub  2oz. Vapor Rub  $30 Holly’s Favorite*     $40 Valentine’s Box   Heart Key Chain  2oz. Disinfectant Spray   4oz. Sugar Scrub  4oz. Vapor Rub  $50 Holly’s Favorite*   Disinfectant Spray : 91% Isopropyl Alcohol, Olive Oil (organic extra virgin, NON-GMO)/Grape Seed Oil , Essential Oil (organic). Sugar Scrub : Sugar in the Raw- Turbinado Cane Sugar, Organic Cane Sugar (granulated), Essential Oil (organic), Sweet Almond Oil/Grape Seed Oil. Vapor Rub : Bees wax, Coconut Oil (organic virgin, cold pressed, unrefined), Olive Oil (organic extra virgin, NON-GMO), Peppermint Oil (organic, essential), Eucalyptus Oil (organic, essential). Available in Eucalyptus, Lavender, Peppermint, Sweet Orange, & Tea Tree. Holly's Favorite : Sweet Orange, Lavender, Eucalyptus & Grape Seed Oil. Email me for orders: hollysgsdjourney@gmail.com Available for pick up at the Queen Creek Farmer's Market on Jan. 25th & Feb. 8th . Schnepf Farms 24810 S Rittenhouse Rd, Queen Creek, AZ, between 9am-2pm. S&H add $15-25 Standard mail. Priority mail add $40-50. Prices vary depending on distance.

I am taking custom orders for Holly's handmade sugar scrubs. All made with only 3 ingredients. All natural & pure. 100% raw cane turbinado sugar, sweet almond oil, and essential oil. Your choice of peppermint, lavender, eucalyptus, tea tree, or orange peel. You will love the way it makes your skin feel! Exfoliating, locks in moisture, while leaving your skin smooth to touch. Not only will you be benefiting your skin, but all the proceeds go to my recovery. This will make you feel great to help a noble cause. All scrubs will be $10 in a 4oz jar. S&H additional. Email me to place your order: hollysgsdjourney@gmail.com I also make an all natural vapor rub $15 in a 4oz. jar. Made with organic beeswax, coconut oil, eucalyptus, and peppermint oil. If you want to share or bless my GoFundMe: https://gofund.me/feb8a2d1

Happy Sunday! I will be visiting Washington, D.C. to attend this event hosted by EveryLife Foundation for Rare Diseases to advocate for policy changes to their Members of Congress on Capitol Hill. I am super excited!   I was able to grab a flight with credits, but the hotels are expensive. I am going to reach out to a few hotels directly to ask for a discount to afford this trip. In reading this if anyone has a friends & family rate or travel agent code that I may use that would be amazing! It never hurts to ask.  Just putting it out in the universe... More details about the event:  https://everylifefoundation.org/rare-advocates/rare-disease-week/

After being diagnosed with Gorham-Stout Disease I have done extensive research. My research has led me too many medical reports and terms that I do not comprehend. I simply try to define the terms and understand these reports as best as possible. I recently discovered this video for expert precision surgical tools while searching for information on jaw reconstruction. Although this is not a full jaw reconstruction this gives an example of what has been done to me and will be done again soon. I currently have my left fibula cut into 6 pieces held together by titanium plates and staples. My next surgery will be on my right fibula. This is advanced technology and I'm truly grateful for my team of specialists. This video is an example and created by AI. https://www.youtube.com/watch?v=wcWXuS_AptM

Fortunate to make it another year. Celebrating my growth and beginning 2025 outdoors in nature. In this new year do more of what makes you happy, it's your life. Make time for yourself, you are important. My soul shines and this brings me peace. Happy New year!! Camping by the lake.

These are images of my CT Soft Tissue Neck with contrast. A CT is a computed tomography scan. The top image is the machine that takes the x-rays. The first bottom photo to the left was taken last December when my neck was severely swollen. The next photo was taken last week, and they are specifically looking at my cervical lymph nodes for reconstruction. You can see a tremendous difference. What you can not see... It is the resection of the anterior floor of my mouth and partial glossectomy or the degenerative disc disease of the cervical spine. I am grateful for this journey and all the people I have met along the way. My energy has been low lately, but I will continue to update my blog.

Feeling blessed to see another day. Yesterday I had my labs and another CT scan. This one I did feet first. This is for arteries to use for reconstruction. Very exciting!! I was able to get in and out early then went to hand out care packages to the homeless. I almost forgot the most important thing to contribute was a positive message. It's easy to relate to a person having a tough time. I met a pretty young lady named Chelsea who had no teeth. I had to double back to give her a blanket and box of protein shakes. She was pleased and it made me happy to give her hope and see her smile. It's always the little things.

Last night I went to my first support group. I was welcomed, laughed, and cried. It was long overdue to participate with other people at the cancer center that can relate and understand what I'm going through. My dad came with me, and we both felt comfortable to share and listen. It was great! I need people that inspire me to keep fighting every day. Thanks for supporting me on my journey. I love you dad.

Under treatment our bodies are wiped out. It is important to rest. A full day of labs, CT's, follow-up, infusions, and pharmacist. I am having trouble maintaining my Sirolimus levels, adjusting dosage again. Taking the time to clear my mind and focus on my game plan. It helps to keep me sane.  Happy Friday!!