April 14, 2014 - Waiting for news....stinks!

Yesterday, a bed opened up for Chase on the Aflac floor, so we are now back into our more "normal" habitat. Yay! He did manage to talk the doctors into letting him keep the catheter, which is still in place this afternoon. I'm kind of glad they did, because right now it's a huge effort for him to move his body into a different position.

 

Chase's Dad (David) got him moved into his room while I was able to briefly escape the hospital for a few hours with Rick. It was my first time leaving the building (the garden doesn't count) since late Thursday afternoon. I can't begin to explain how nice it is to leave, even if just for a little while. It helps to restore some sense of normalcy. We ate dinner at a local Mexican restaurant and then headed to Target to pick up a few things I needed...and didn't need, like the $1 bunny ears I couldn't resist. They didn't stay on his head long, about 20 - 30 seconds I think. Oh well. At least they stayed on long enough for a picture!

 

Today, Monday April 14, started off pretty slow. Chase has slept most of the day with the exception of a few interruptions for oral medications, IV beeps, and to change out IV bags. The important thing is that he's been able to sleep without much pain! Amen!

 

The neurosurgeon stopped by to check on his incision and his progress. He was very pleased to see that Chase's right arm has greater mobility today than it did yesterday. I was thrilled, too! He can now fully bend the lower part of his arm and raise the elbow off the bed. He can also flex and rotate his wrist and move his arm, albeit slowly, to touch his left shoulder. Such small movements that we take for granted every day, but to see him go from barely able to move that right arm to this?? Amazing!

 

A physical therapist and an occupational therapist stopped by today as promised. They helped Chase sit up in bed, stand up and move to a wheel chair so he could sit up. It was a struggle for him and I could see twinges of pain in his face, but I was relieved when they told me that he did most of the work himself. They wanted him to stay in the chair for about 30 minutes and he ended up staying there for close to 2 hours. The chair itself is pretty cool because the back can recline for a more comfortable position. When she came back to help him back to bed, he was able to do the majority of the work himself. He still can't use either arm to really support himself all that well and he's kind of unsteady on his legs, but just to see him moving around makes me SO happy.

 

The visitor who we REALLY wanted to see all day was Dr.Cooper, his primary oncologist. Every time someone knocked on the door, we were hoping it would be him. I think everyone who came by, whether it was other doctors or nurses, knew who it was we really wanted to see. The big question that has been weighing on all of us is WHAT is Chase's treatment going to consist of? Are we looking at more full-body chemotherapy like the last three times, another transplant, radiation? Inquiring minds want to know!!

 

Finally, another oncologist who stopped by received a text message from "DTC" (Doctor Todd Cooper) while she was in the room. He told her he would be by around 2ish - it was already 3pm. Not too long after they left, he showed up at last and my shoulders felt a little lighter even though he had yet to say a word. I think just knowing that we were about to get some answers helped. It's been over three years since we've seen or spoken to Dr.Cooper because Chase has been under the care of the BMT (Bone Marrow Transplant) Team, but it didn't feel like it. We have so much trust in him and he's always been a "plain speaker" to Chase, even when he was younger. Like he said when he was here today, "I'm not going to blow sunshine...". You get the idea!

 

So what did he have to say? He's made some phone calls to other doctors around the country and in this case, because Chase does not have signs of leukemia cells in his bone marrow, they are not going to do full body chemotherapy!!! Praise God! He was quick to tell us that there is a probable likelihood that leukemia cells could show up in Chase's bone marrow in the future. However, there is no sense in treating him for what isn't here. The important thing is to focus on getting rid of the remaining tumor and treating any evidence of leukemia that is present as of right now.

 

Chase will end up receiving targeted radiation to eradicate what is left of the tumor, coupled with chemotherapy that is delivered directly into his spinal fluid. Dr.Cooper has ordered an MRI for early tomorrow morning to verify that there are no other tumors that may be lurking in his brain or in other areas of his spine. Once we know that he's clean otherwise, the radiation team, who we've yet to meet, can start formulating a plan.

 

Dr.Cooper also wants to have another spinal tap to to verify the presence of leukemia cells in his spinal fluid. If they took spinal fluid from the area near the tumor instead of his lower back, then that may be giving us an inaccurate picture of the saturation of cells in this central nervous system. I don't know when that might occur, but he did say that he wants Chase to be far more recovered from his surgery before he has him go through another procedure. He will need to be sedated for that and he will also be sedated for the MRI tomorrow because it will be a long scan.

 

Overall, I'm relieved. Chase is relieved. I'm fully aware that this despicable disease could rear its ugly head in his marrow in the future, but right now I'm going to give thanks that he isn't needing to face the chemotherapy he so dreaded. Let him fight the battle that's before him now. Let's take this one day at a time.

 

So, waiting stinks! Yes, we waited a while to learn what the plan would be, but we're still waiting. Waiting to verify that there aren't any other tumors lurking around. Waiting to see when he'll start radiation. Waiting to learn what kind of radiation schedule he'll be on and for how long. But, I take heart in the fact that we know more today than we did yesterday and that he's got that answer to what was literally causing a pain in his neck!!

 

As always, thank you SO much for your prayers. Please keep them coming! God is good!