Wow, 4 years ago, it’s time to update the blog. Geez where did the time go. Let me update our lives.
We lived out our lives in Jeremy World during Covid in our happy, safe, mortgage free home, trusting in GOD. I worked from home for a while, went back to the office, and then worked from home some more. It was a crazy time, but God was so merciful.
Jeremy news. We did get some genetic results; Jeremy has a mutation on his L1Cam gene and Genetics feel that he is presents with a severe form of L1cam- X-lined Hydrocephalus which affects the nervous system. Then the other gene in question is the DDl1 which is also affects the nervous system and it has similar patterns of the L1Cam. Genetics think that we are going to find that Jeremy’s 2 genes are the reason why he is so severe and complex because he got hit with these 2 that affect the nervous system. Jeremy overall has been doing very well, he gets about 1 UTI a year, but we catch them early and treat them. Jeremy did get RSV, then then he caught COVID and we landed one night in the ER, but he came home the next day and did great. His shunt tubing came lose again, so we were admitted on a Friday, surgery on Saturday and discharged to come home on Monday. I must admit Jeremy being out of school has been a blessing, so much less stressful, although he’s a social person but if he’s tired, he can rest. We’ve been blessed with 3 amazing full-time nurses and one that fills in part time, and a friend who still helps when needed.
I was blessed to cross a few places off my bucket list these last years. A visit to Grand Canyon with my sister and niece was breathtaking and amazing. A yearly vacation with my best friend to the Smokey Mountains, Gatlinburg, Grand Tetons, Charleston, SC, Boston, MA, and this past fall we went to Vermont and New Hampshire. These were all amazing places, so many beautiful handiworks of GOD, good time away to refresh and relax. Jeremy went to Make Promises Happen camp one summer, but we learned camp life just isn’t his thing. I took him on vacation for two years and went to stay with friends in Phoenix, AZ, about 4 days. Jeremy had fun, did great flying and we enjoyed lazy days, playing in the pool, and visiting with friends. This December I went to New York City with my sister and niece, the sights were breathtaking, crazy busy with people and we even got to go across the Hudson River to New Jersey to Weehawken to see the famous dueling grounds of Aaron Burr and Alexandar Hamilton.
I was sad that one of my best friends, Denise Bruch passed away. We talked in August to catch up and how much fun our Savannah trip was, and she passed away in September. I was blessed to be able to travel to Jacksonville in October to attend her memorial. I got a motel on the beach and was able to sit in solitude and reflect on the wonderful memories I have of her and our time we sit on the beach and solved the world’s problems.
3 years ago, I started to get sick, fatigue that I can’t even describe, shortness of breath, coughing so hard and constantly, breathing harder, bumps along my clavicle. I was basically surviving. July 7, visit to the ER with a compassionate physician who was concerned did a CT with contrast revealed multiple swollen lymph nodes, in my mediastinum cavity, encroaching my aorta and trachea. A visit with my surgeon on a Tuesday, surgery the next Friday to remove a lymph node revealed I had Follicular Lymphoma. A referral made to a Hematologist, Dr. Scott Cole, bone marrow biopsy, PET scan, port placement and by September 20, I was officially diagnosed with Stage III Bulky Follicular Lymphoma with no organ or bone marrow involvement my PET scan lit up like a Christmas tree. I was set up for 6 rounds of B&R (Bendamustine & Rituxan) starting in October. I felt so much better after the 1st treatment, I quit coughing and then dealt with the effects of the medicine. I completed my 6 treatments, did well, had minor interruptions to life. I am in remission for 2 years and in May I got my port removed.
We still have Marley the cat and I’m still her best friend ever. I guess we got bored or needed some more excitement or I’m just crazy, so we added a boy cat, Beasley Roy… aka the Beazer or the beast cat, Beas is crazy on all levels of crazy, but we have tons of fun with him. I often find him late at night sleeping on the edge of Jeremy’s bed all curled up.
I was excited my church started doing a ladies Tuesday night bible study, so we have gone through Ephesians, 1 Peter and we are currently going through the Pilgrims Progress. I’m grateful for my church family, Sapulpa Bible Church, for the teaching of God’s word. I’m growing and learning more of God’s word and he’s stretching me.
I continue to teach Children’s Sunday school. I have gone back to visiting families at the hospital weekly, my passion and heart, serving and supporting families who have children with special needs. I continue with Tulsa Sibshops. Jeremy enjoys his days at home with his nurses, attending Sunday school and church and the occasional outing.
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