Let's play catch up! 

Got home from hospital and he was doing better. We had some bumps gettting medicine regimen figured out, liquid was not the best plan when it tasted so bad!  He got a bolus of fluids at home. The next day he got a second one and then the nurse came to deaccess him so he could be needle free for prom. Things were looking up. He was keeping steroids and morphine down and ate some ice cream and a little mac n cheese and was feeling well enough to be back at his gaming chair 😉

June 1st he went to ball. I got to be his driver so that I could be near by if he needed to check out early. He was still fatigued and had not eaten enough to fuel his body. He lasted almost a few hours and even though he was spent, he did say it was fun and that he had a good time. 

The next day, 6/2, the nurse visited for labs. His temp was elevated and his heart rate was high. After a call to oncology they requested an ED visit. Labs were drawn and an antibiotic along with fluids started. BP was hovering around 98/63, still low and HR was 105  which was better than what our home nurse got. Not sure if these stats are infection related, dehydration related, morphine and steroid related???? Also need to mention that Dyl has been having body aches and pains. Random and puzzling, but one consistent area was his left shoulder. On the way up to strong it was "burning" and very painful. So they wanted a ct of his shoulder. At this point we are thinking no Zac Brown. We would never make it home in time. Labs came back looking good. No Infection, bp stabled and hr was normal. So we were able to leave to make it home for the concert and would get the CT in the next day or 2. Dyl was beyond exhausted but still enjoyed the concert.

On 6/4 he had a ct of his shoulder and we met with GI. Ct did show some areas that may have been causing the pain. Plan was to get radiation ready to go asap. 

On 6/6 radiation started on his eye socket. Plan was 5 sessions. 

On 6/10  even though he was tired and kept having break through pain he still walked the primary and elementary school halls with his graduating class. He only went because Emi was so excited she was going to see him walking through. Grabbed lunch and went home to rest before radiation that day.

On the next day Dyl did not go to radiation. The night before we stopped zyprexa, anti-nausea med, per our conversation with oncology. He was sick that next morning. We ended up needing 2 anti-nausea pills and ativan to catch up. Also noticed his temp was elevated, but within a few hours it leveled out. We also had decreased his steroid to see if that was what was causing all these random body aches. 

By the 13th the break through pain had increased in number and intensity. We ended up increasing his morphine and got his steroid back to the dose it was earlier. He seemed to do better Thursday and Friday. Finished radiation for his eye socket and everything was scheduled to begin radiation to the left shoulder the 17th. Due to his consistant pain in both shoulders and his neck we tried to get imaging Thursday of the right shoulder but the appointment fell through so we have one for Monday the 17th. So Monday he will be getting an MRI in the morning, radiation to left shoulder and mapping for the right shoulder for radiation.

6/14 we had home nurse come to give fluids at home. Dyl's bp was low again, oxygen was 93 but got up to 96 and his temp was 95. Kept rechecking and temp was not going higher than 96. We called the office and they wanted repeat labs. When the home nurse came back after fluids were done, he seemed better. Temp was still 96/97 but everything was headed in the right direction. Decision then was to keep eye on him. He was able to make it to see Emi's class sing at the flag day ceremony, but could not last long in the sun and standing, so we stayed long enough to see her perform and then left. The increase in meds still seemed to be helping he was not needing immediate release morphine for any break through pain. 

6/15 Emi and I were out shopping when Dyl called. He was experiencing tingling in his legs and felt like his bladder was full but he was unable to go. I scooped him up, left kids with dad and headed to strong ED. Urine test looks ok, labs look ok. The worry is that there is a mass compressing his spinal cord causing these sensations. Nuero surgeon checked him and ordered CT of spine. Results came back inconclusive. Images are not picking anything up that would be causing this. It does pick up the "known disease" that was there before and they are stable. Now we need an mri of his spine to see more detail in his soft tissue. I asked for full body, they said it may be more beneficial to do the spine mr first and go from there. Full body mris are not as detailed as part specific mris. Since they could not get us in for mri right away, they admitted us so we could go as soon as machine was free. 

2am we headed for mri. His tingling is up in his back side/hips now and he is weak and shaky on his feet. Walking is not happening as hard as he tries. Going to the bathroom has its challenges as well and he is so very very tired. He's not getting the sleep he needs with everything going on. All the meds he's taken can affect mood and make you sleepy too, add that to the frustration of not being able to do things independently because your body won't let you....he is frusterated and sad and just wants to feel better.

Please surround us with healing, hopeful vibes and prayers. We need answers and now along with a quick, effective treatment plan! Not today cancer! Back off please! We just need a break. It's been a long month of getting rid of one ailment in exchange for another without any real relief. Somethings got to work! If anyone can beat this, Dylan can. Even if its a million to 1, he's gonna be that 1. 💪