Wednesday, May 11, 2016

Radiation begins

Today is the day I have dreaded most since we formulated a plan with the team of Oncologists. Today is the day that Hank begins 5 weeks, and three days of radiation. Today is the day that the Radiologists must slowly begin killing the cells in Hanks nasal area... the day that his bones slowly become dead in this region of his body. It is what doctors might call a necessary evil. If we want to kill the cancer, we must also kill Hank's nose and surrounding structure.
It won't turn strange colors and fall off his face, it will simply remain there. The same size, same shape, as the rest of his face and head grows with his body. New soft tissue will grow in this region, but the bone will remain just as it is today. 
It breaks my heart. Not just the radiation, but the Chemo, and the thought of necessary future reconstructive surgeries. All of it. The loss of freedom in where, how, and who Hank can play with. Watching Hank slowly lose interest in many foods he used to enjoy... whether from loss of appetite or  a change in his palette. His fuzzy little head, sparsely flecked with fair hairs. His once bright eyes, now look constantly swollen and tired. His uncharacteristic moods and naps. Our once sturdy, Hank the Tank, is no longer bearing that hearty frame. 
As Hank begins radiation today, I fear his small body shrinking... from loss of appetite, from being sedated each morning, from potential blisters in his mouth, from the combination of radiation and chemo... it is heart wrenching having to take him to a "therapy" that seems wholy untherapeutic from the outside. 
Today, Hank receives two of these "therapies." He goes in for radiation around 10am in Irving, then back to Dallas for 8 hours of chemo at Children's... then back to Irving in the morning for radiation. Please pray for minimal side effect for Hank as he has to be sedated with every radiation treatment. I fear all the chemicals and medicines building up in his system the next couple of days. Please pray for rest for Hank and Taylor as they will likely have to stay over-night for Hank's chemo and then go directly to Irving in the morning upon release. Pray that the radiation center can get Hank's appointment time earlier in the morning than 9:15, since he is unable to eat or drink anything prior to the procedure... which means he begs for cereal (his obsession right now) from the time he wakes up to the time he is sedated. Please pray for Taylor and I, as we are constantly mourning during this long process of trying to heal Hank. But mostly... please just pray for complete healing for Hank. 

Tuesday, May 3, 2016

Oh, it's may?!

The past couple of weeks have been a whirlwind. I will start with saying that Hank did FABULOUS after his last heavy "V.A.C" chemo. It was a long day though... Taylor took Hank to Children's Medical City in Dallas around 8:30am that day. After waiting for a couple hours, they gave Taylor the choice to head to the Plano campus for chemo, or to go home and come back on Thursday. After letting Hank choose, Taylor and the tank headed to Plano. Hank was slightly dehydrated when they checked his levels, so before chemo could start, they pumped some fluids in that little guy. Chemo started later in the afternoon, which meant he would need to stay overnight. Hank only vomited once before they were able to manage his symptoms with meds. Yay!
Fast forward to the next Tuesday, when Taylor takes Hank to the hospital at 6am for an MRI, then  Wednesday morning went in for an outpatient injection. His counts were low, specifically his red blood counts, so the doctors told us to closely monitor Hank for fever... which is the first sign of something lurking in his immune compromised body. Low and behold, that very night Hank spiked a fever just before bedtime. So off I went with the little guy to the ER. We were admitted around 11pm, and in our own room by 2:30am. Hank was given antibiotics and we crashed. After an early wake up time we met with doctors... who wanted to see Hank's counts go up and him fever free for 24 hours before he could head home. So we got right on that. Hank's fever had broken during the night and tried to get him to eat and drink all day... gotta create that blood! After a day in bed, lots of movies, video games, legos and grandma time... plus a Ruby coming to join us... we spent another night in the hospital. The next morning, Hank's 4am labs came back and his counts were UP up and we were away! We took it easy the rest of the weekend and tried to lay low, for fear of having to go back to the hospital.
While we were in the hospital, we missed an appointment with the Proton Radiation center, where Hank was supposed to go in for his simulation day and final imaging prior to the start of radiation therapy. That appointment was rescheduled for today, Monday, and so the week begins. whew.
My head is reeling from all that has been happening. Taylor is in crunch mode for the end of semester with school, crunch mode for building the new ropes course he works for, and all when we are about to begin radiation treatments every day of the week for about 6 weeks (roughly 2 hour treatment window since he has to be sedated every time)... and in the early morning in Irving (about 45 minute drive). These six weeks will also include chemo, two of the weeks being Irintotecan weeks. (everyday, 90 minute treatments.)
Radiation starts next Wednesday.