We have been home for a week now and are adjusting to our new normal. Family and friends have been helping with errands and keeping the kids busy. The home nurse visits every few days. Simon has an abdominal catheter for fluid build up that I’ve been trained to drain as needed and the nurse commended my thumb control skills for consistent flow. My expectations for anything have gotten so low in the last month that I was embarrassingly proud of the compliment.
Simon spends about half the day sleeping and the other half visiting with friends or using the iPad. He needs to get up more but he is still battling swelling in his lower legs and feet. The pain is very well managed now so mobility is one of our next projects to tackle. But before that, it’s diet. Simon has lost about 15 lbs. in the last few months. He was already so slender, so he has been put on a high, dense calorie diet. That’s why we keep declining meal offers. I’m trying to slim down yet we’re trying to fatten Simon up. I wish I could transfer some of my reserves to the poor guy. For lunch today, I had half of a Trader Joe’s Asian Slaw Salad. He had nuts and a milkshake made with whole milk, Ensure, eggs, and ice cream.
He also began the one FDA approved drug that can slow tumor growth today. His oncologist will be monitoring him weekly to make sure his body is tolerating it. It can take months for positive, noticeable results, but the adverse effects could happen quickly. His lab results from this week were very solid. The doctor called me and we chatted for about 10 minutes. Simon is young and his body wants to compensate for this disease. His kidney function is strong, his hemoglobin is improving, and his remaining good liver function keeps surprising the doctor, considering the liver is riddled with tumors.
So we wait. We watch. We monitor. We laugh. We fold laundry. We eat – some of us less, some of us more. We pray. We chat.
Annnnnndddddd, I take pictures. He slept a lot today, so that’s all you’re gettin’. And burglars, take note of his splintery baseball bat in the corner. You do not want to mess with this house.
Not ashamed to admit I’m a blog stalker. Happy to hear that everyone seems to be adjusting to the new normal. Keep on keeping on. Love & prayers…..
Im a closet blog stalker… a concern’d friend .. need my daily fix of goldenlonestar
Let me know when you do want a meal. I’ll put Nammy to the task! By the way, she is always, always asking about y’all, and you know she would love to feed you! And we all pray, the most important task we have right now!
I’ll be happy to come eat ice cream with him and take one for the team. Ha ha
You are such a fundamental instrument to this whole picture Kristy!! You are an incredibly strong women, someone God knew Simon and your family would need someday. Prayers are always with you and your sweet enduring family! Much Love
Keep us updated on how this new medication is working…and keep that thumb working! Love to all of y’all.
The more he moves around the faster the swelling may go down. If he walks the calf muscles will move that fluid out 🙂 Love you all.
Glad I got some time with you today! Always praying! Love u all!
Thanks for the update my lovely friend. Looks like Simon is the new “sleeping beauty” huh?
So glad things done during hospital stay are making quality of life better for simon. All of us who care about y’all appreciate the updates you post Kristy. I’m so glad he has you and his parents there. Daily prayers for all of you.
hi Kristy. I have a large supply of BIOFreeze that is topical pain relieving gel (menthol) that might help temporary relief for simon’s legs and feet. it is mostly used for sports recovery but may help reduce swelling temporarily and provide a bit of comfort. If you think it would help, I would be happy drop some off for him?
Always praying for y’all. When Chris’ legs were so swollen, those speciality diabetic leggings/socks helped and provided some relief on and off. The drawback was it forced the fluid from his legs up into the abdominal area more, but with the drain at home might be worth the trade off. Such a blessing you are able to have such great home care. The Lord is providing and will continue to. So many praying for you (so much for you to carry) and for Simon. Also praying for that trip to Texas! Love to you and your family!
I get on here and get my daily fix of goldenlonestar also. Always paying for good news. Glad to hear he’s doing better. I will continue to pray for him and family.
*Praying —- not paying
I have been following you and Simon. I wish the very best. I would be more than happy the help in anyway I can in assisting with mobility. I’m a PT with experience working in all kinds of medically acute and delicate situations. Mobility is important, but it’s not everything. The less dependent a person can feel with their mobility issues however does correlate in increase quality of life. If I can help in any way, which I would very much like to, let me know. 5626868813
Simon , it seems like just yesterday U entered my classroom with your sweet Mom bringing all your needed school supplies. For you see U were one of the three from this precious family being entrusted to me to learn everything needed that would ensure
Your educational journey be successful❤️ Simon, I want U to know that U taught me much more that school year than I taught U. Your mom made sure I knew all the updated medical concerns and then she and U made sure I knew to not BABY U! U were very good at knowing how to communicate your wants & needs even at an early age. U made it loud & clear U didn’t need or want anything but to be that boy that God had created and had a plan for. U had a smile and happy attitude every single day just as U knew God’s plan was not going to include a paddling from Mrs. Whatley for talking a bit much. U had the personality & wit that never required the need for corporal punishment! U were the heartbeat of out classroom & all the others knew that Simon looked out not only for his teacher but for all his friends. Simon , S I said U taught me so much that scho year and U made me a better teacher !
U have always had a specially place in my heart as your brother Sam and sister Callie. Your mom & dad have been so blessed to raise the three of you kids to become such wonderful adults. Simon , I love U and always have! Thank U for touching my life and making me a better teacher❤️