Even though much of this will feel like a big downer, we have had some good times since the last entry too! Dyl played drums with his jazz band for night club night, Maddie started working at the creamery and started driving, kids are heavy in sports with basketball, soccer and lax camps/programs, Dyl has been staying caught up with tutoring and expected to graduate in June! We were recently surrounded by so much love and support at a benefit put on by my sister and brother in laws. We shared that love and support with CURE at their annual walk, Maddie went to prom, we all got to meet up with our buddy Hyde at his charity event, Dyl got to take a weekend trip to Tenessee with his girlfriend to meet Chavez Young, a AAA player and Dylan Defender! He has his senior ball this Saturday and tickets to see Zac Brown on Sunday, but there have been bumps through out.

Dyl had to take an extra week break from chemo because his mouth and throat filled with sores. Unfortunatly doxil can cause mouth sores and adding radiation to the jaw intensified that side effect. While waiting to recoup to get chemo Dyl complained of back pain. We brought him to the ED in hopes of expediting an MRI, which  showed spots throughout his spine. By Monday we were in radiation office for consultation. Simulation was the next day setting up to target what they thought was contributing to the pain, a mass on L4 vertebra and TH10. So low back and mid to low back. We were back up for chemo on the 10th and radiation started again on the 15th for 5 sessions. 

Doxil is not recommended to be done with radiation simultaneously. It intensifies the side effects, hence the extreme mouth sores and now the extreme stomach pain. He has been so uncomfortable he has not eaten solid food since Friday, it even pains him to swallow his own spit. Which also made it difficult to get meds down over the weekend. It hurt his stomach too much to swallow anything. So now he's stopping steroids cold turkey, which does not do your body any favors and pain meds. Sunday he threw up blood when he got home from his weekend trip to Nashville. Monday the nurse came for labs and she was concerned he was showing signs of dehydration. We switched his meds to liquid and dissolvable meds to try and get him back on schedule. He said he felt better Monday but still was only able to get down sips of gatorade/water/popsicles. Monday night he puked blood again once. Tuesday he puked once still with blood but less. So thinking stomach/esophogus issues are on the mend. Plan was to do iv fluids at home Wednesday but Tuesday night dyl pointed out a potential new tumor above his left eyebrow. We talked with Dr. K and we had a plan to get home fluids wednesday and then see him in clinic on Thursday. Wednesday morning Dyl was having body aches, which could be dehydration and sudden stopping of steroids/withdrawl. His left eye was swollen and he was seeing double. So we changed plans again and headed in to clinic for eval and fluids. Decision was made to admit us to expedite scans, get meds and hydration and to get swelling/pain under control and optomology to look at his eye. 

During admission he had 2 eye exams, one at bedside and a more indepth one in the eye care center. All tests were normal and his optic nerve is not at risk so vision is good. Double vision went away when the swelling went down with the steroids  He had consult with radiation oncologist and simulation (fitted for another mask). Radiation is scheduled for next week for 5 sessions. 

We were able to discharge with home nurse coming tomorrow to give more fluids and we have liquid or dissolvable meds for nausea, antacids and pain. Trying to keep him on a schedule so he can enjoy the weekend. Then next week we will meet with oncology, start radiation and consult with GI. Hoping that him not puking today is a good sign he's on the up and up but he has lost almost 10lbs from not eating this past week. 😞

Dyl also had pain in his left shoulder blade. The PET in April did have uptake signal in the left proximal humerus, which is shoulder socket area and the left sternoclavicular joint, which is in the middle below his throat. The humerus could be potential concern and what is causing the pain he is having even though it's being felt in the back. 

Just so much going on and so many things that are helping him with one issue but causing another. We are just trying to get each thing under control. Prayers and wishes are needed! He's a tough kid and I just know he'll get through it, but it has been overwhelming this past week.🤞🙏💪🫶